Our community ! Understanding communities ! Dysfunctional communities ! Building better communities
  Understanding disability service organisations ! An alternative model ! Community research ! Community survey


Our community : changing attitudes, empowering communities
The concept of Deinstitutionalisation as applied to today


Explanation of terms
Notes
References

Abbreviations
LRP: The Least Restrictive Principle
N: Normalisation
PCP:  Person Centred Planning
SRV: Social Role Valorisation
TP: Transitional planning




Introduction




Part 1 .......................
Discussion about disadvantaged people in society.

People with disability (inclusive definition)
A disability or a disadvantage
Personal needs and community needs
Community ignorance and social stigma
A functional or dysfunctional community
The disability community
The social labels of disability

What is society?
What is a social consciousness?

What is community?
Characteristics of a community
The community, the social construction and the institutions of the community
The social systems within the community
Communities within Communities
Minority community groups
Characteristics of minority groups
The social stereotype of the community
Community needs Vs Personal needs
Community needs
Personal needs
Community needs and Personal needs

The role of the community
Community valued roles
The roles of the members in the community
Community participation and inclusion
Building values and relationships
Building community networks and relationships
Building community support networks
A community service and a community network
The network
The role of the network
The role of the network in the club, group or organisation
The community support network
Building the community support network
Barriers to community participation and inclusion
The role of the gatekeeper in the community
The gate-crasher
A community group or a community service
A local community group (LCG)
An empowered community
Community rights and responsibilities

The role of the buildings in the community
The community of the building
The building and the community
The building and the institution
The reality in supporting people with high support needs

The role of institutions in the community

An institution could be describes as
Characteristics of institutions
Institutions and institutional care
Institutions can be thought of within two main groups
Formal institutions
Short term care
Long term care
Informal institutions
Negative outcomes (devalued)
Positive outcomes (valued)
The institution, the asylum and the nursing home
Institutionalisation, deinstitutionalisation, what's the difference
Historical perspectives of institutionalisation and deinstitutionalisation
Social perspectives of institutionalisation and deinstitutionalisation
Technological perspectives of institutionalisation and deinstitutionalisation
Professional perspectives of institutionalisation and deinstitutionalisation
The institutionalisation of deinstitutionalisation
The institutionalisation of community care

The role of the service provider in the community
The service provider
Characteristics of the service provider
Service role models
Models of service
The role of the service provider
Models of service delivery
The service setting
The role of the service setting
Types of service models
Full integration
Partial integration
Enclaves (separated)
Segregated (isolated)
The roles of the stakeholders
The communities of the service provider
The future of the service provider
Saturation point
Full circle
Lennox Castle Hospital

The role of Social Role Valorisation in the community
labelling as a social phenomenon
Social
Role
Valorisation
Social Role Valorisation
Normalisation, Social Role Valorisation, the Least Restrictive Principle and Person Centered Planning
Society, Roles, Values and Social Role Valorisation
Social roles Vs Community roles Vs identity
Social Role Valorisation and institutionalisation

Social Role Valorisation and empowerment
The role of  Social Role Valorisation
Social Role Valorisation and the community
A valued community role
Social Role Valorisation and Marxian Valorisation theory
Is it Social Role Valorisation?


Part 2 .......................
Discussion about each community, how each community fulfils a particular need in society and its impact on people with high support needs.

Crisis point


The role of the family in the community
The decline of the family and reliance on government support

The role of the living community
New generations, new communities.
Changing values, institutions and cultures, and how they change the way we relate to each other in a community.


The role of the recreational community
The merging and separation of different cultures, and their impact on the way we define recreation.

The role of the education community
The ability/disability of education community to provide the necessary skills and resources to communities in providing for their own needs, as well as the needs of
their members.


The role of the employment community
The ability/disability of employment community to provide the necessary skills and resources to communities in providing for their own needs, as well as the needs of
their members.


The role of the health community
The way innovations in social services, health and medicine are redefining communities.

The role of the internet community

The role of technology in the community

The way new technology is redefining our understanding of communities.

The role of government policy and practice in the community
Government policy and practice (the institutions of government, and how these institutions determine the decision making process towards interventions in community practice).

The role of the Local Community Group in the community
A community group that helps people help themselves.





Personal reflections

The good life
A question of values
A new approach to service delivery
Review of literature



Footnotes










Introduction  (Top)

A community is not "My Community". It is "Our Community". It's not just a place that we live in. It's a place where we have valued relationships and experiences with the others around us.

The discussion about the treatment of people with high support needs has been around for a long time. Throughout history different societies have had different attitudes towards different groups. These attitudes determine the policies that provide the models of care within that society. The policies that were used are considered as degrading and dehumanising by most societies today. Through a better understanding of human physiology, psychology and psychiatry each area or discipline within the human services has evolved into a science that looks for truths, rather than based in folklore or religious doctrine. These days, societies have become more accepting and provide a better standard of care. However, while we may accept a person in the social sense and there may be some sense of social responsibility, we generally leave that responsibility to someone else. In our own personal lives, we are more interested in our own needs, rather than the needs of others. Its only where a person has a personal interest or investment in the needs of others he/she may become more actively engaged in that person or group. While I may respect the person in a social sense, the way I treat the person in the personal sense may be quite different. The expressions "society", "social" and "community" have often been used to mean the same things. A social group describes the common characteristics of a group, but not the personal relationships within the group. A community group is the shared interests, networks and relationships we have with each other within society. While a person can move from one community to another easily according to his/her needs at a particular time, it is more difficult to move from one society to another. As a result we see lots of communities that are a part of the same social group. If someone wants to build a nuclear reactor in a suburb, I would be more inclined to protest if it was planned to be built in my suburb. If the nuclear reactor became a social issue, there would be a great deal of discussion about the project.

Any change in social attitudes or policy can only come about through some form of
action that draws attention to the circumstances of a particular group within society.


We see Disability being provided by the disability sector, Aged care being provided by Health Care and Ageing, Family support being provided Health care and Community services being provided by Department of Community Services. Each service has its own niche in government bureaucracy. While each area of service has different objectives, they are all designed to achieve the same outcomes; to enable members to be able to participate in and become valued as a part of their respective communities. While the focus of this writing is about people with high support needs, it is certainly not limited to this group. These days, people have such a multiple of conditions, situations and needs that do not fit into the traditional service frameworks that there are probably at least 2 or 3 government agencies, departments or services that are involved. We see Social Security, Funding and various services that become involved in providing support to a person. Tobacco, alcohol and drug abuse have become major issues in society that impact on all parts of our daily lives.

Current policy within the various Gov. departments, organisations and services has been to draw attention to the needs of various groups on a social level. SRV has been a major contribution in providing a social awareness to the needs of people with high support needs. This has worked to some extent in that these groups have more opportunities to live a better life in society. Existing service delivery has been focused on the person. We look at the person and how support can be provided that most suits the person's needs. The policies, strategies and interventions used are structured within or around the person. Services supporting the aged, people with a mental illness, people with a disability etc., are about strengthening existing networks and relationships as well as building new networks and relationships. However, I feel that there has been a lack of understanding of the roles of Government policy, institutions, services and communities in this process. Where people with high support needs have specialised needs are relocated into another setting (location, building or suburb) there is an impression that the person is automatically a part of a community. There is a great deal of discussion about "community access" these days, but what do we actually mean? Government policy is to provide regulations that facilitate access to various activities that are available to others in society. Various laws, rules and regulations are put in place so that all government departments, business, buildings, parks, community events etc, are accessible to all members of society. Service provision has also been designed to facilitate access to various social activities within society.

Various disability groups and organisations promote themselves as promoting "community participation" or "community living", but what do they actually mean?
The goal of the current paradigm in the various Gov. departments, organisations and services is to include people with disability within a community.
This strategy is effective in providing local community supports for people with low to medium support needs.

People with low to medium support needs       ------> living community
                                                  ------> education community
                                                  ------> employment community
                                                  ------> recreation/social community

What generally happens is that if the person does not have the skills and resources, or each community does not have the skills and resources ...
... The person keeps the existing communities that he/she was a part of.
... The existing communities that the person is a part of are relocated with the person into the new setting.
... New communities are created that have the skills and resources to provide for the person's needs. These new communities may be a part of a service or organisation within the wider community, or within the wider disability community.

People with high support needs   <------ living community
                                                  <------ education community
                                                  <------ employment community
                                                  <------ recreation/social community


Shows the relationship between the skills and resources of the community,
 and the amount of support that can be provided within the community.
(See Community care Vs Institutional care)

The above shows that community support is dependent on a community having the skills and resources in supporting a person or group. Just because a person may wish to be a part of a community does not mean that the person can be supported within that community. People with high support needs also have the opportunity to participate in, develop relationships and share experiences within each community that most suits their needs, as well as the needs of other communities that they are a part of. New technology, drugs and changing community values and behaviours facilitate the inclusion of people with high support needs within the wider community. New electric wheel chairs, for example, are smaller, lighter and travel further, and allow people to access other communities that were unavailable a few years ago. Wider community awareness of the needs of people with high support needs (SRV) is also increasing. Communities are also evolving. They are being redefined by each new generation. New technologies allow people to develop relationships and share experiences in ways we could never imagine 100 years ago. Support services are also evolving, that build relationships and networks, and, the skills and resources within the various communities that a person may wish to be a part of. New government policy also provides regulations and codes within all services to provide access for all members within society.

Various services and organisations are designed to support people with high support needs. They provide a valued social role in providing for the needs of people that cannot be supported within the wider community. However, the service or organisation can only function according to government policy and practice, and in this respect, is just like any other business that provides a service to the wider community. There are expenses and budgets that allow the business to operate. There also needs to be some form of income to support the activities of the business. The business is also represented by various government departments, agencies, interest groups and institutions. They provide the rules and regulations, the skills and resources, the values and behaviours that allow a business to participate in wider community. There is also a co-dependant relationship between the business, the employment community, and the wider community that it is a part of. The business needs a customer base to support its own needs and the needs of the stake holders within the business. The success or failure of the business is dependent on the business having the skills and resources to provide for the needs of its members as well as the needs of the wider community that it is a part of. In this respect, the disability sector is no different to any other service sector. The education sector (for example) also has its own institutions that define its role in society. The value of each school, college or university within the wider community is determined by the success or failure of each school, college or university in providing for the needs of its members as well as the needs of each community that it is a part of.

Unfortunately, in the process of supporting the person, the particular government department, organisation, profession or service may become more important than the community that the person is a part of or would like to be a part of. We see aged care, mental care, health care, disability and other sectors all treating different groups of society within a particular paradigm or policy that is unique to that sector. Because each sector has evolved a set of specialties, cultures, and treatments that is unique to that sector, it can be difficult to find the best solutions in providing the best support for the person. A doctor, for example, has a goal of treating an ailment or disease or condition that impacts on a person's health. What the doctor is trying to achieve is to enable the person to live as much as possible a life where the person is able to fulfill his/her needs and participate as much as possible in the life style that most suits the person. There is the assumption that the person already has the community networks and relationships, and the doctor is not skilled in developing those skills within the person. The person may be referred to other services if there are problems in other areas of the person's life.  We see aged care sector supporting the aged, people with a mental illness or condition treated within the health sector, people with an intellectual or physical disability treated within the disability sector, people with cancer, aids being treated within the medical sector. Each sector is a separate identity and generally operates within its own arena. A person that is admitted into a particular sector often becomes a part of that system. The cultures, practices, behaviours and expectations of that sector often define the way the person participates in society. This is evident within the disability sector, where support is provided within that sector rather than each social sector that provides the various social functions and roles within society. Issues such as vulnerability, ownership, accountability, funding, and, legal issues, human rights issues, moral issues, cultural issues and medical issues etc., all play a part in the way people with a disability are supported within society. These issues are managed by government policy and practice which determines service delivery.

As a result, we see groups of people that have an intellectual disability, groups of people with cerebral palsy, groups of people with a particular medical condition etc. Because each group has specific needs, each service has evolved to meet those needs that are not available within the wider community. New communities are created that provide the networks and relationships between the services and the service users. The institutitions of the service provider become the institutions of the community that is a part of the service. This is no different to any other community that is a part of a service provider. Educational institutions, sporting institutions, business institutions etc, all have communities that are built around the agendas, cultures, values, behaviours and expectations of the service provider.

While this philosophy is effective in treating and supporting each group, some problems appear when a person or group of people present with conditions within more than one sector. Or, what do we do where a person, or group of people do not fit into a service? How do we deal with the person. Funding for services and equipment is a good example of a bureaucratic management in providing for the person's needs. Just because a person may be entitled to a service or equipment does not mean that the person will get the support. There is a maze of paperwork, and each funding application has to fulfill certain criteria that are laid out by each government department, organisation, profession or service. There may be 2 or 3 different services involved with a particular issue, which requires 2 or 3 different bureaucracies and 2 or 3 different funding applications. Often there are wider issues in a person's life that are out of the control of the service and the service can not deal with. Sometimes this is unavoidable where a person or group of people need to be protected from the community, or the community needs protection from the person or group of people. People with an incurable disease or are a danger to to themselves or others obviously need to be isolated until their condition changes.

The above is based on my own experience. A person I know ("A") was living in his own unit in a retirement village, where that he has a lifetime lease. In 2009, he had a stroke and was lucky that there was a friend there to provide assistance. "A" had his friends next door, as well as other friends that used to visit him. There were facilities there that he could use. He was a part of that community. When he had the stroke the doctor said he needed full time medical care. Instead of providing fulltime medical care within the unit he was living in, "A" was placed in a nursing home in a restricted section where the outside doors are locked.

"A" was presenting multiple conditions ...
... has a lifetime lease at a retirement village.
... has engaged a person with Power Of Attorney to manage his financial affairs.
... he is elderly >80 years old.
... he has the beginnings of dementia.
... his wife had passed away a few years ago.
... he had a stroke.
... needs 24 hr care.

The nursing home ...
... "A" became a part of the institution of the nursing home.
... he had to comply with the routine of the nursing home.
... he was locked up.

The outcomes ,,,
... a lack of informed decision making in the process.
... because "A" has a lifetime lease at the retirement village, "A" has to pay expenses at the village, as well as the nursing home where he is now living.
... is using skills and resources that could be more productively used by someone with greater needs.
... "A" has lost the networks, skills and the resources he had in the retirement village.
... has lost control over his own life.
... is seen as a sick person.
... can not make his own decisions.
... treated as an idiot.

Generally, people with a mental illness, or have a severe physical, disability or condition (high support needs) are well looked after today. The times have changed mainly through the principles SRV. These people (as a social group) are probably better looked after than other groups such as the aged. the poor etc. (this is speculation based on empirical observations). Although there are still some communities, groups etc. that may treat disadvantaged people as sick, deviant etc., these attitudes are on longer reflected in the society in which we live. While the debate rages over the best policies and practices to use in providing the best outcomes, I think that we are all agreed that they are no longer "devalued" in our society today.

The goal of the human services is to make a positive difference in a person's life. There are things we can change (values, attitudes, behaviours, cultures etc.) and things we can't change (available resources etc.). By enabling people to fulfill their needs, develop community networks, participate in activities and share experiences within their community, they have the opportunity to become valued members of their community. Conversely, by enabling each community to fulfill the needs of its members, to foster and develop personal networks within that community, to facilitate strategies, solutions and activities so that all members have the opportunity to participate in those activities, and connect with other members through shared experiences and valued relationships, the community has the opportunity to become valued by its members as well as other communities that it is a part of.

Institutions and institutionalisation has been used to describe the buildings, social structure, conditions, and expectations (The Origin and Nature of Our Institutional Models - SRV) that people who have an intellectual or physical disability lived in. Most of the literature describes their circumstance as dehumanising and devaluing. While it is true that conditions were miserable for people with a disability, conditions were also miserable for other groups of people such as the sick, aged, the poor and destitute, criminals etc. Even educational institutions were also fairly brutal places those days. It is also true to say that people with an intellectual or physical disability have not been treated the same in all cultures and societies throughout history. There are some examples where this group has been well cared for by the society in which they live. (See 1856.org: Social History of the State Hospital System in Massachusetts - THE FORGOTTEN HISTORY: THE DEINSTITUTIONALIZATION MOVEMENT IN THE MENTAL HEALTH CARE SYSTEM IN THE UNITED SATES)

We may see these conditions as primitive and barbaric these days, but it is important to remember that they did the best they could with what they had. They had none of the conveniences that we take for granted these days. These days we have technology that they could only dream of one hundred years ago. Just as the horse and buggy, oil lamps for lighting and gas for heating was considered state-of-the-art in technology then is considered old fashioned, outdated and archaic now. Drugs and other technological advances and innovations that have improved their lives and enabled them to participate more in society were non existent then. While conditions in the past may have been bad for people with a mental or physical disability, they were also bad for all members of society. Hygiene, shelter, and general living conditions were poor as compared to today, and while we see the treatment of these disadvantaged groups as uncivilised, we need to remember that they did the best with what they had. In fact, these groups were much better off in the "institutional care" as described by Goffman, Narje, Wolfsnsberger and others, than they would have been on the streets without these building and institutions. The problems were more to do with the setting (available resources), management, culture, and the expectations, that they lived in, rather than the fact that they were institutionalised. Institutions are a part of our everyday lives: in the family, cultural and ethnic groups, religion, sport and education etc.

People with high support needs will always need a highly structured, and to a certain extent supervised, environment that accommodates their special needs.
Imagine you were on a package holiday tour that you purchased through a travel agent (service provider), in a country that you do not speak the language (China, for example). You are in a strange community, you can not communicate with the members of the community, you do not know the customs or the laws and are dependent on your guide and the service provider for your needs. You are given an itinerary of the places you are going to visit, a list of the places you are going to stay and the times you are expected to be at each place. Your tour guide makes sure you are where you are supposed to be, and is responsible for your welfare. Your every move is recorded, you are restricted in what you can and can't do. You are dependent on the service provider for your accommodation, meals, recreation, transport etc. You are living with, and sharing the same experiences with the same people for the entire holiday. Your individual needs become less important than the needs of the group. You stay at the best hotels, eat the best food, travel in the best style and participate in local activities that are co-ordinated by the service provider. You may meet some of the locals who treat you with dignity and respect. You may develop some valued networks and relationships, however the fact remains that your life is supervised and you have little choice in what you can and can't do. While the holiday may be an enjoyable break from your normal routine, you are fortunate in the knowledge that the holiday is for a short amount of time and that you have your own community to return to.

Unfortunately, people with high support needs have little choice about their situation. They need specialised support and structured environments (just as the packaged tour is a structured environment), and while we can make things more comfortable for them (good accommodation, food, specialised equipment, access to activities etc.), they will always have these support structures as a part of their lives. For example, a person who is restricted to a wheel chair for any reason, would need various modifications to his/her home to suit the person's needs, is restricted in what he/she can do and the places he/she can go. The person may need some assistance in transferring, washing or general home chores. The person may not be able to drive a vehicle and need specialised transport services. A person in this situation would be dependent to a greater or lesser extent (depending on the needs of the person) on a family member, hired help, a service provider or a volunteer. As in the above example, the person has to fit in with the people that provide the support or service, and any other service users. A person with a severe intellectual or physical disability may be supported by a service provider, and is a part of that community. The person may be valued, and have valued roles within the service provider, and the other communities that he/she is a part of. The service provider may have a similar role as the tour guide above, where the clients are supported in the activities of the wider community, but the community that they are a part of is the community of the service provider. The amount of support that each community can provide for the person depends on the skills and resources available within each community that the person participates in.

Institutional care has always been thought of as an asylum that supports large numbers of people. This is certainly not the case. Institutions are just as much a part of society as communities. We see religious institutions, educational institutions, business institutions, sporting institutions, and the list goes on and on. These institutions define the way we participate within society as well as each community that we are a part of.

By understanding the roles of Government, the community, institutions, organisations and service providers, the buildings and finally SRV, strategies and solutions can be found so the person has the opportunity to participate in activities and share experiences, develop permanent connections and relationships, and have valued roles within each community that he/she participates in.

When providing the most appropriate care for people with high support needs ...
1) The community is not where the person is living, but where the person participates, shares experiences and has valued relationships with others.
2) People with high support needs (severe disability, aged etc.) will always need support structures as a part of their lives.
3) The amount of participation in a community (living, education, employment or recreation) is directly related to the skills and resources of the person, and, the skills and resources of the community that the person wishes to participate in.
4) Institutions are going to be around in one form or another whether we like it or not, It is the way that they are used that is the problem.
5) The institutions of a society towards a particular group determine the way the group participates in society.
6) The institutions of a particular government department, organisation, profession or service define the way the person is supported within that society.
7) Facilities that support people with high support needs do not need to be the nursing homes or prisons in the sense that they are today, but can become warm inviting community places that offer a range of services to the community, as well as be a part of the wider community within that society.
8) People with high support needs are a minority group in our society, and will have the same problems as other minority groups in being a part of society.



The concept of Deinstitutionalisation as applied to today


Part 1 .......................

Discussion about disadvantaged people in society.




People with disability (inclusive definition)  (Top)
A needs based model of disability.

Disability is generally defined by some bureaucratic process as ...

"Disability is lack of ability relative to a personal or group standard or spectrum. Disability may involve physical impairment, sensory impairment, cognitive or intellectual impairment, mental disorder (also known as psychiatric disability), or various types of chronic disease. A disability may occur during a person's lifetime or may be present from birth." (Wikipedia: Disability)

 A disability is any continuing condition that restricts everyday activities. The Disability Services Act (1993) defines “disability” as meaning a disability:
which is attributable to an intellectual, psychiatric , cognitive, neurological, sensory or physical impairment or a combination of those impairments;
which is permanent or likely to be permanent;
which may or may not be of a chronic or episodic nature; and
which results in substantially reduced capacity of the person for communication, social interaction, learning or mobility and a need for continuing support services.
Disabilities can result in a person having a substantially reduced capacity for communication, social interaction, learning or mobility and a need for continuing support services in daily life. (http://www.disability.wa.gov.au/aboutdisability/disabilitydefined.html)

The above definitions are based on a medical model, and while appropriate for medical and legal purposes, only highlights (reinforces community perceptions) the fact that people that have a physical or intellectual disability are different from others and therefore maybe treated as sick or deviant (The Origin and Nature of Our Institutional Models) (The Individual and Social Models of Disability) (Psychological and social impact of illness and disability). Deborah Kaplan (The Definition of Disability) has written an interesting paper on the vagaries and various ways disability is used in society. The problem is that most definitions treat the group, rather than the individual.

The social definition refers to society and all things within society. The social definition also has problems in blaming society in not providing the infrastructure etc. in supporting these groups.

"The social model of disability proposes that systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a particular society. It recognizes that while some people have physical, sensory, intellectual, or psychological variations, which may sometimes cause individual functional limitation or impairments, these do not have to lead to disability, unless society fails to take account of and include people regardless of their individual differences. The model does not deny that some individual differences lead to individual limitations or impairments, but rather that these are not the cause of individuals being excluded. The origins of the approach can be traced to the 1960s and the disabled people's Civil Rights Movement/human rights movements; the specific term itself emerged from the United Kingdom in the 1980s." (Social model of disability, Wikipedia)

The main purpose of a definition it to explain the meaning so that it can be understood within the context of the structure. An individual/medical definition therefore refers to the person and the science of medicine. A social definition refers to to the person and society, and the relationships between the person and society. A brief search on the WWW will show hundreds of definitions both generalised and more specific. Each definition is used in a specific context which relates to a medical or social setting or situation. A person, for example, may be disadvantaged in one situation, and not disadvantaged in another situation because of the different needs within each situation. One person may be disadvantaged, while another person with a similar disability may not be disadvantaged. It seems to me that there is enough evidence to suggest that both definitions do not work properly in the process of enabling these people to live more normal lives in each community that they wish to be a part of (Disability 10 facts or fallacies?), (Toward an Inclusive Definition of Disability).

There is much discussion about an individual identity, a social identity, a collective identity, a group identity, racial-cultural identity etc., etc., etc., that is seems that we have lost the plot. By defining people with disability as different, WE ARE TREATING THEM AS DIFFERENT. Have you ever asked a Canadian "What part of America do you come from"? What has been the reply? Chances are that it cannot be repeated here. What about the person? Does it really matter if the person is Canadian, American, African, black, white or orange with blue dots? What about the person's needs? How is the person going to fulfill his/her needs? How is the person disadvantaged in not being able to fulfill those needs? What roles does the community have in fulfilling the needs of its members?

Rather than looking at the disability, we should be looking at the needs of the person. The above definitions focus on the disability within the person or society, rather than the person's needs within each community that the person participates in. In most cases the disability may have a small impact on a person's life and the person may not be disadvantaged in other areas. The disability may also have huge implications in all areas of the person's life. If I say to you "This person has a disability", you will need to know what the disability is and how much support the person needs. Does the person have high or low support needs? What can the person do? What can't the person do? You need to know more about the person than his disability so that you can support the person in fulfilling his/her needs. You also need to know about the community and the setting that you are supporting the person in. Are you supporting the person in a home by himself or with others, or in a school, work place or in a recreational setting? What skill and resources does the person need? What skills and resources does the community need?

Disability is also a personal thing. How a person copes with the condition mostly depends on the support from family, friends, neighbors, at the shops, at school or any other community that they are a part of. Whatever Gov. policies, laws etc. are put in place, or the social obligations of the wider community has in accepting people with high support needs, this does not automatically mean that the person becomes a part of that community. In a shopping center, for example, I am temporarily a part of that community and may not have any permanent connections or relationships. If I cannot communicate to the shop assistant, or I cannot read the shop signs, I then become dependent on others to fulfill my needs (to buy some food etc.). If there is no one to help me, or maybe steals my money, or thinks that I am different, I become disadvantaged in not being able to fulfill this need. I may try to get someone to help me or try to get some attention to my situation, but the chances of being seen as a nuisance are great. My own experience in supporting a person with an intellectual disability is testimony to this outcome. He has a limited understanding of money and the value of things that we take for granted. He has no sense of time, and can be very friendly to strangers (and gets aggressive if they do not take time to talk to him). I think of him as being "Streetwise" in the sense of having the some basic skills (strategies) in surviving in the wider community, but lacks the knowledge behind those skills.

I propose to use a more inclusive (community) definition.

Any person that has a particular characteristic that disadvantages their ability
to fulfill their needs within their community, actively partake in the normal
activities of their community, or devalues their identity within their community.


The above shows that the disability is not the problem. We all are disabled to some extent in our normal lives, for example, if the power suddenly went out in my home and I can not do anything to fix the problem, I am disadvantaged in that I do not have the skills or resources to fix the power. I may be able to call the neighbor or a service provider to fix the problem, which means that I am no longer disadvantaged. However, I still have that characteristic (that I do not have the skill to fix the power), but I am not disadvantaged by it. If there were no support available to fulfill this need, then I will be disadvantaged in that other needs, preparing meals, washing etc. may not be fulfilled. This may lead to other needs not being met that may result in all sorts of other problems. Even a simple thing as not having a mobile phone is considered as a disability these days. Alternatively, if I wanted to drive in my car to an appointment and can not because the car has broken down, then I am disadvantaged in that I can not get to the appointment, if there is no community service that supports this need. How many times have you sat in front of a blank computer screen? You are helpless. You need to get to your e-mail. You need to get to your bank account, or the latest stock prices. What do you do? The computer and the internet are so much a part of the lives of young people these days, and anyone that does not know even how to turn one on is seen as different and misses out on those communities that seem to be a major part of their lives (becomes marginalised). The implication is that people that do not have the skills or resources to fulfill a need, and can not get the support may be seen as different to others (devalued) because those needs are not being filled. A person with a severe intellectual or physical characteristic that disadvantages him/her in their normal activities will need more support in fulfilling those needs. If the person can not get any support within that community to meet a particular need, then that person is disadvantaged in not being able to fulfill the need.

Any dialogue in the discourse of people with high support needs and the community, needs to be positioned in the context of the person and the community. What are the needs of the person? What are the needs of the community? How can the needs of the person be balanced with the needs of the community?

By looking at disability as needs based, rather than located in the person or society,
we can find strategies to fulfill those needs within each community that the person participates in.


Shows the relationships between, 1) the person, 2) the disability, 3) the community.

The above suggests that it is possible for any person to be disadvantaged (devalued) for any reason in any community. Some studies were done with school children a few years ago where the class was divided into groups (Blue eyes Brown eyes). The results clearly showed that people become disadvantaged quite easily. Just as Muslims were targeted a few years ago because they may be terrorists, all Muslims became disadvantaged. The same thing happened to the Jews and any number of other groups of people. The same thing can happen in any community. If I wear my P.J's to work (which has happened in America) I am seen as someone who is different. In some communities a particular characteristic can be an advantage. While I was traveling around the Northern Territory I certainly felt like a second class person in the shops. I spent some time living in an Aboriginal community and it took a while to become accepted as a part of their community.

The above also suggests that new communities are created that are designed around particular needs that are not supported within the wider community. These new communities have the skills and resources necessary to provide for the needs of its members. Disability services, organisations and support groups are communities that provide for the needs of disadvantaged people in society. These communities provide valued roles in society in supporting these groups. Unfortunatily, because some of these groups have high complex needs, a community becomes specalised in, and focused on a particular characteristic, rather that the person as a whole, and as a result a person may not recieve the support that is most appropriate to his/her needs.

A disability or a disadvantage:  (Top)
Any definition that describes a persons ability or disability to fulfill his or her needs is centered around the person. "Disability" is a social label that is used to describe a persons circumstances within society. This label describes a characteristic of the person, Unfortunatily a social label can not describe how the person is disadvantaged in filfulling those needs. Within society we see all sorts of disadvantaged groups. They all have their own niche within government bureaucracy. The unemployed, elderly, children, drug rehabilitation, people with disability, just to name a few, all have their own policies, procedures, criteria for assistance etc. etc. etc. We need special services just to assess the person's eligibility for a service and to sort out the maze of paper work. It can be quite daunting for a person to even know where to begin. Just because I may have a condition that is defined under the Disability Services Act does not automatically mean that I will receive support. I may be disadvantaged in that I do not fit into the criteria (age, weight, income, personal supports, gender, type of disability etc.) of any suitable service, or that the service does not have room and I am put on a waiting list. All groups are disadvantaged to some extent with regard to health care. Do I have private health insurance? Is my condition classified as elective treatment? How long do I have to wait for treatment? What are the legal implications if I am over weight or have a some other pre-existing condition or am allergic to some medications etc.

A person or group may also be disadvantaged in that there is no service (skills or resources) that supports their needs.
In remote areas where there are no services,
or where they do not fit the criteria of a service,
or where a service does not have the skills and resources,
they have to rely on their own networks and support mechanisms or others in the community for support.

If the person or group does not have any support:
may become isolated
may become a burden on their own community
may be placed in other services that are not appropriate to their needs
may be grouped together
may be labeled with the same characteristics
may have their rights taken away from them
may be seen as a minority group and therefore may be treated as a minority group
may be denied the good things in life that are available to others in the community

A lack of skills and resources in the community also means that the person may be seen as:
a sick person : the person is treated differently to others
a nuisance : takes up resources that are needed elsewhere
a troublemaker : is always trying to standup for their basic rights
an object of pity : the person can not look after themselves
subhuman or retarded : is not capable of making their own decisions

In fact some members of these groups are often placed in the same settings today (both literally and figuratively) that Goffman, Wolfensberger and others wrote about in the past.
Asylum seekers
Aboriginals
Aged
People with drug and alcohol problems
People with mental illnesses
People with high support needs
Etc.

Sometimes people are separated for their own good and in the best interests of their community ...
they are a harm to themselves
they are a harm to others in their community

The above can happen in any place at any time where the community does not have the skills and resources to look after their needs.

Alternatively, having a disability does not necessarily mean that the person is disadvantaged, sick or even deviant. The Blind and Deaf are examples of communities do not see themselves as disadvantaged. There are also people that are amputees that have their own communities that support each other and are able to live independent and fulfilled lives.

It could be then argued that the concept of "disability" is fundamentally an objective value that is positioned within the social contexts of the social constructions that determine the policy and decision making processes that are a part of the society in which we live. Blindness, for example, in an objective definition based on a measurement determined by some bureaucratic process to assess a person's eligibility or access within that definition. We see people being grouped into various classifications that allow or disallow entry into a service. Barbara M, A, (in Gary L. Albrecht, Katherine D. Seelman, Michael Bury, 2003, Handbook of Disability Studies, P.97) describe the various contexts that the term is used. These may be useful within the various legal, medical, social, intellectual or health arenas within society, but unfortunately, these paradigms cannot measure how the person is disadvantaged in fulfilling his/her needs. For example, I ring an electrician to fix the power and am told that I am not eligible for a subsidy for the service because I do not have a disability, even though I cannot pay? Whether I have a disability (as defined by a government department) or no disability, the fact is that I am disadvantaged in that I may not have enough to pay for the service.

Personal needs and community needs:  (Top)
What happens when the needs of the community outweigh the needs of the person?

Communities have certain needs (access, communication, presence, participation etc.) in order to function as a community. When looking at the needs of the person within a community, there is an expectation that the person fits into the social stereotype of the community that he/she wishes to participate in. If I wanted to drive an aeroplane on the freeway, I wouldn't last long. A particular characteristic may be the way the person dresses or behaves that does not fit into the normal patterns and cultures (institutions) of that community. If I want to be a part of a sport community (or any other community), there is an expectation that I would dress and behave appropriate to my particular role in that community. In a business community (for example) I am expected to wear a suit and tie. If I wear a T-shirt and thongs I may not be accepted unless I have other positively valued characteristics that are more important than the way I dress. A person with an intellectual disability would not be expected to be a part of a business community, unless the person and the community have the skills and resources required for the person to be a part of that community. Sometimes there is a real challenge to find the right community that has the skills and resources to support the person. As a result, new communities are created that accommodate the needs of the person.

Community ignorance and social stigma:  (Top)
Any person or group of people that do not share the same characteristics as the majority of the members of a community will be seen as different. A lack of community awareness about the condition, characteristic or circumstance of the person contributes to misplaced assumptions or attitudes about the person. Society has a habit of labelling groups of perple who share some common characteristic as being the same, regardless of any differences that there may be. This happens mainly through ignorance of that characteristic. Just as AIDS sufferers have been marginalised because of a lack of understanding about the condition, people with a memtal illness, dementia or an intellectual disability are all treated and expected to behave a way that devalues their identity. Sometimes these myths are perpetuated by institutional policy and practice, where community values and cultures do not support these gropus.

... communities are generally very protective,
... communities can become conditioned to behave a certain way,
... they are generally outside the experiences of the other members of the community,
... communities generally cater for the community as a whole, rather than meeting individual needs,
... the community does not have the skills and resources to support these groups,
... there is generally some form of harm, friction or conflict of interests between the members,
... they are seen as a threat to the community,
... its too hard. (See Understanding communities)

A functional or dysfunctional community:  (Top)
The current rhetoric regarding a person's ability or disability to function effectively in society completely ignores the functions or roles of the various communities that are a part of the process. There is very little written about the health of each community that a person wishes to participate in. There is some discussion about how a community or society can be modified to accommodate the needs of people with disability. But what about the needs of the community? Just as a person may need to be supported in a community, a community also needs to be ale to function properly in order to support the person. There are any number of things that can happen within a community that results in a community being unable to function property (see Dysfunctional communities). Supporting a person in a community usually involves a government agency, social service or organisation, and the way the agency service or organisation interacts within that community can have a positive or a negative impact on that community. How is the community modified, what stake holders are involved in the process and do they feel a part of the process? What other issues and agendas of the community have an impact on the process and the community? What other communities are involved in the process?

The current social policy has been to close the institutions (the buildings and social constructions of the buildings), and relocate the people that where supported in those institutions into community settings. What has actually been achieved by this process? I would argue "very little". There is only a small group of people with disability that are able to be supported within each community that they wish to be a part of. People with low to medium support needs have a greater chance of participating in and being a part of that community. People with high support needs are less likely to have those opportunities. As the populations of these groups increase within a community, more community resources are needed, which means that there are less resources to provide for the other needs of the community. It can be seen that whatever the government policy or practice is, in defining the disability and the processes that are put in place to support a person in a new setting, that person does not automatically become a part of that community.

I remember a saying ... "You can lead a horse to water, but you can't make it drink". Ultimately, it is up to the community to decide if a person is or is not accepted into that community. SRV is an important strategy in any program designed to develop valued experiences and relationships within a community. The greatest challenge is to find the most appropriate community that suits the needs of the person as well as the needs of the community.

The disability community:  (Top)
The disability community is no different to any other minority group in society. They heve to fight for their rights to participate in society. Just as the Muslams, the aged, the unemployed and other groups that do not share the same characteristicts as the majority group, people with disability have to lobby for recognition of their status within socity. They may have a legatimate role as defined by government policy and process within society, however the way these groups are treated by society may be quite different.

Within the disability community we see groups or communities of people that have a specific charasteristic or disability. We see people with an intellectual disability or illness, people with a physical disability (Cerebral Palsy, Blind, Deaf, Spina Bifida etc) that all have different needs. These communities can not support themselves and look to the wider community (society) for funding, donations, volunteers, as well as acceptance in the opportunity to live and participate in normal community activities within society.

The social labels of disability:  (Top)
Spastic was a legitimate medical term that described a condition that a person suffered from. Other terms that were used within the medical professional to describe a characteristic of a person or group were largely used within the medical profession as a shorthand way to describe the group. Over a period of time these expressions became accepted and widely used within society. Various accounts of the way various groups are labelled have often been misinterpreted or skewed to support a particular idea or agenda of the person writing the account (see Conceptions of idiocy in colonial Massachusetts, Journal of Social History, Summer, 2002 by Parnel Wickham). Other accounts focus on a particular theme or situation without putting the account into the proper context. We are all guilty in this respect and there has been a great deal of discussion about the relevance and accuracy of historical research and documentation. The expression "The eye sees what it wants to see" (unknown) is as true now as it was then (See also Social constructionism - Wikipedia, the free encyclopedia)




What is society?  (Top)

"A society or a human society is (1) a group of people related to each other through persistent relations. (2) A large social grouping that shares the same geographical territory, subject to the same political authority and dominant cultural expectations.

The term society came from the Latin word societas, which in turn was derived from the noun socius ("comrade, friend, ally"; adjectival form socialis) thus used to describe a bond or interaction among parties that are friendly, or at least civil. Human societies are characterized by patterns of relationships (social relations) between individuals sharing a distinctive culture and institutions; a given society may be described as the sum total of such relationships among its constituent members. Without an article, the term refers either to the entirety of humanity or a contextually specific subset of people. In social sciences, a society invariably entails social stratification and/or dominance hierarchy." (http://en.wikipedia.org/wiki/Society)

Societies are more than a bunch of people stuck together in the same space and time. They are organised into groups that have various functions within society. These functions are organised into various roles that fit together like a clock or a play. These groups can be described in any number of ways according to the relationship of a group with other groups in society.

These groups provide a way to understand our relationships with each other and the others around us:
... Society: probably the most inclusive or generalised
... Community: defines our relationships within society
... Clubs: defines our relationships within the community
... Teams: defines our relationships within clubs
... Groups: defines our relationships within teams
(These groups can be reorganised any way according to the perspective of the user)

Other generic or eclectic groups are
... Communities
... Societies
... Associations
... Institutions
... Organisations
... Families
... Personal
... Private
... Public
... Social
... Cultural
... Ethnic
etc.

More specific descriptions of these groups describe the particular function of the group within a group or society.
... RSPCA
... Institute of Charted Accountants
... Roman Catholic Church
... activ

What is a social consciousness?  (Top)

"Social consciousness is consciousness shared within a society. It can also be defined as social awareness; to be aware of the problems that different societies and communities face on a day-to-day basis; to be conscious of the difficulties and hardships of society." (http://en.wikipedia.org/wiki/Social_consciousness)

An awareness of the various social relationships within a community, as well as other communities that it is a part of, and the wider social relationships that they are a part of, is crucial in how the community succeeds of fails in providing for the needs of its members. Just as people interact with each other, communities interact with each other, and it is up to the community to determine how it works towards achieving its desired goals and objectives. Communities need to be able to react to events outside their control and have an impact on the community. They need to be able to balance their own needs and resources with the needs and resources of the wider community that they are a part of.

What is community?  (Top)

What Is Community

 
What is Community?



Community

The origin of “community” is from the Latin word …

"The word "community" is derived from the Old French communité which is derived from the Latin communitas (cum, "with/together" + munus, "gift"), a broad term for fellowship or organized society." (http://en.wikipedia.org/wiki/Community)

"Community: The origin of the word "community" comes from the Latin munus, which means the gift, and cum, which means together, among each other. So community literally means to give among each other." (http://www.seek2know.net/word.html)

Generally, most people define themselves as a part of a community, in the most generalised form, within society, i.e. the group, team or club is a part of the community, or, the community is a part of the group, team or club. The expression "Community", like family, is also more personal in that there is a greater sense of permanency than a group, team or club. I'm sure you could list 4 or 5 communities that you are a part of: your family, where you work and socialise, you may go to school or be a part of a community group. Expressions such as "The world community", "The environmental community", "The economic community", "The European community" etc. are common in society today.

Communities are generally groups of people that have something in common. They may live in the same area, share common interests or characteristics,
work or play together or just enjoy each others company. They provide something worthwhile to the members in as much as there is a value in being a part of the community.


Communities are about sharing and caring. There is this sense of supporting each other as well being a part of something that is greater than ourselves.
 We all have particular needs and look to the community to meet those needs. The community provides us with the skills and resources to meet those needs.
 
In a sporting community, for example, we learn the skills and contribute to the facilities that are associated with the sport, and support other members within the community. Within the sporting community we see clubs that are communities within the sporting community. Each club has teams and groups that have different functions or roles. These provide each club with a sense of direction and purpose. The management is responsible for the coordination of activities and behaviours that strengthen the community. The players are trained and supported in the providing the best outcomes for the club. The supporters are valued for their support etc.

Within society, we see all sorts of communities. There are ethnic communities, religious, living, sporting, educational, employment and even disability communities. These communities have all evolved to fulfill a social need and have valued roles within society. People generally belong to more than one community, and each is designed to fulfill a particular need. These communities are generally open to all members of society. However, some may have some sort of right of entry, or, are secret or exclusive. These are rare and are specific to a particular group. Communities built around services tend to have some sort of right of entry. Disability communities, educational communities, business communities etc, are all about some sort of characteristic, skill, induction, or a price to pay, that allows the person entry into that community.

Characteristics of a community:  (Top)
While communities are as individual as their members, they are usually organised or built around a set of principles that allows the members to participate in the community
... Access: the members must be able to access the community
... Communication: the members must be able to communicate with each other
... Presence: the members must have some sort of relationship with the other members (see themselves, and are seen, as a part of the community)
... Participation: the members must have some sort of involvement within the community

The community also needs ...
... A way of defining itself as a community
:.. An agreement between the members about what the community does and how it is to be done

These principles could be described as the characteristcits of the community.
Characteristics of a community:
... Has one or more roles that define its identity within society.
... Has a set of goals - provides a sense of direction.
... Is organised within a set of formal/informal hierarchies, beliefs, values, expectations and behaviours (institutions) that defines the boundary of the community.
... The boundary may be explicit (physical) or implicit (defined by the shared characteristics of its members).
... Has ownership of it's members.
... There is some form of communication between members.
... Has skills and resources that are shared between the members.
... Balance the needs of the community with the needs of its members.
... Often has clubs, teams, groups etc. within the community.

The community, the social construction and the institutions of the community:  (Top)
While different communities have different roles in society, they all share the same characteristcits. These characteristics could also be described as its social construction. They provide the building blocks that the community is built on. While it is preferable for communities to have all these characteristics, communities that do not have all, or where a characteristic is severly lacking, could be considered as a Dysfunctional community.


The social construction of a community (see Social construction of the community, Understanding communities)

An institution is an improtant part of the social construction of the community. The institution describes the means of cooperation, order and stability within the community.
Without a form of order and stability (See also Characteristics of an institution).
... the community can not fulfill its role,
... there are no boundaries that define the community,
... the members do not see themselves as a part of the community,
... communication brakes down, or is nonexistent
... the commnity looses its skills and reources,
... the community can not fulfill its needs,
... clubs, teams, groups etc are no longer are a part of the community,

Characteristics of a Community of Learning, Ernest L. Boyer

The social systems within the community:  (Top)
These social systems could also be described as the Informal insitiutions of a community (See also Characteristics of an institution).
These institutions are informal because they are more about the way these members and groups interact with each other, rather any formal policies, rules or regulations of the community. There can be any number of layers in the community, The bigger the community, the more layers there may be. The institutions of each layer also determines the way the group functions within community.

Communities within Communities:  (Top)
Within most communities there are communities (sub groups) that share certain characteristics.
People generally socialise with others that have the same
… Shared characteristics such as culture, age or gender: people identify more with others their own age etc.
… Roles: teachers generally socialise with teachers and students generally socialise with students.
… Goals / Interests / Behaviours: people identify more with others that have shared goals, interests or behaviours.
… Religion or culture.

Within a suburb we see all sorts of communities that share and compete for various resources. There are sporting, elderly, professional, administrative, service comunities etc, that generally work together to provide for the needs of its members. When looking at the characteristics of a community, any other communities that are a part of the community need to be considered. How do the characteristics of each community enhance, or conflict with the other communities of which they are a part. A football ground is going to be built in a suburb. Which communities will benefit and which communities will suffer? Would the resources be better used in providing another type of facility for the community? Would the football ground be better located in another community?

With the introduction of new technologies and population growth, communities are becomming less isolated and more dependant on other communities. The expression "World Community" is becomming more relevant today where the actions on one community has greater effects on other communities. Climate change, free trede, oil prices etc are examples of how comunities need to find sollutions to issues on a global scale. Even in Australia, we see events such as the drying up of the Murry river having an impact on how the respective communities see themselves and interact with the other affected communities.

Companies and businesses are also having to redefine their roles within the wider community. Mining and industrial companies are required to operate in a more socially responsible way in supporting there own employees as well as the other communities that may be involved. Just as in Japan, where companies provide a whole of life approach to supporting their employees, Australian companies are creating whole communities where the members are a part of the community as well as the wider community.

Minority community groups:  (Top)
Within the community we see all sorts of factions, sub groups, splinter groups that do not share some of the characteristics of the wider community that they are a part of. These groups are at the extreme ends of the community that they are a part of. These members may have different values, a different agenda, a particular need, are of a particular age group or disability, or have some other characteristic that distinguishes themselves from the rest of the community.

In the Muslim community we see different groups that have different agendas that are not representative of the Muslim community. In the disability community we see different groups that have different needs. The same thing happens in any community where the members find that they have no real connections within the wider community (marginalised).



Community services and organisations sometimes unintentionally marginalise their members by:
... Providing facilities and services (buildings, transport, staff etc.) that are separate from the community.
... Providing living, recreational, educational programs that are within the organisation.

Over time, these activities become the social norm, where the community learns new values, expectations, and patterns of behavior. The community becomes dependent on the community services and organisations in fulfilling their role in providing for the needs of it's members. The community service or organisation that supports its members, may become a community in it's own right.

The members:
... Develop the social networks and participate in the activities of the community service or organisation.
... Are valued within the community service or organisation.
... Feel connected to each other and are interdependent on each other for various reasons.
... Communicate with each other.
... Share resources etc.
... Become identified as a part of the community service or organisation.

The individual members within the minority group may be further marginalised by the community service or organisation in the fact that they need to fill a set of criteria or characteristics before they can receive support. Members that do not have a support group (or can not get to one) have no real way ot get out of their situation.

Characteristics of minority groups:  (Top)
"Sociologist Louis Wirth defined a minority group as "a group of people who, because of their physical or cultural characteristics, are singled out from the others in the society in which they live for differential and unequal treatment, and who therefore regard themselves as objects of collective discrimination."[3] This definition includes both objective and subjective criteria: membership of a minority group is objectively ascribed by society, based on an individual's physical or behavioural characteristics; it is also subjectively applied by its members, who may use their status as the basis of group identity or solidarity. In any case, minority group status is categorical in nature: an individual who exhibits the physical or behavioural characteristics of a given minority group will be accorded the status of that group and be subject to the same treatment as other members of that group." (Sociology of minority groups)

Minority groups are about groups of people that see them selves, or are seen, as having a particular characteristic that is different from what is considered as the social norm. Minority groups are not about size, but more about the characteristic of the group being at the extreme ends of the social scale of the community in which they participate (marginalised).

Individuals that are at the ends of the social scale tend to be marginalised because:
... Communities can become conditioned to behave a certain way
... They are generally outside the experiences of the other members of the community
... Communities generally cater for the community as a whole, rather than meeting individual needs
... There is generally some form of harm, friction or conflict of interests or cultures between the members
... Its too hard. People that do not have the support networks necessary for participating in the activities of the community, or may not be able to cope with other members of the community become marginalised.

Characteristics of a Minority Group : (Based on Richard T. Schaefer, Racial and Ethnic Groups 5 - 10 (1993))
"Distinguishing physical or cultural traits, e.g. skin color or language
Unequal Treatment and Less Power over their lives
Involuntary membership in the group (no personal choice)
Awareness of subordination and strong sense of group solidarity
High In-group Marriage"

Other characteristics of a Minority Group:
... Have a particular characteristic that is not shared with other members in the community.
... Located at the extreme ends of the social scale of the community in which they participate.
... There are generally a conflict of interests between the members of the minority group and others in the community.
... Are marginalised or even disenfranchised.

The social stereotype of the community:  (Top)
Social stereotypes (or social labels) are more about some characteristic or set of characteristics that stand out and can be identified as belonging to a community. They provide a useful image or mental picture of what we may expect. Social stereotypes can be either positive or negative depending on how the community is portrayed in society. These social stereotypes are not about the members of the community, however a label applied to a person may be the same as the social stereotype applied to community that the person is a part of, or, the other way around. So, what is the difference? Well, the best way to describe this difference is to think of a religious community. We all have different ideas about what a religious community is, but there are a number of characteristics that are common within the various religions that are useful when we think of a religious community. If I say to you that that person is very religious (a label), you associate that social stereotype with the person and may have a completely different picture of the person to someone else. The person could be pictured as a person who follows the religious guidelines of a creed or religion (a Jewish person would have a different idea or picture of the person as compaired to a Born again Christion or Muslem), or, who's whole life revolves around a particular idea or practice (football, soccer etc). A priest, or, religious fanatic (labels) gives us another picture of the person. These labels are more personal than the social stereotypes we use to describe the community that they are a part of. A bikie community is an example where the labels of a person or group of people are applied to a social stereotype. When we refer to the disability community, we try to convey the idea of all things related to disability. If I say to you that this person has a disability, chances are, you will picture a person with an intellectual disability, or a person in a wheel chair. When we refer to the aged, we generally have a picture of a nursing home, and the idea that the aged have the same needs and rights as a person with an intellectual disability may not make the connections.

Community needs Vs Personal needs:  (Top)


Community needs Vs Personal needs

Community needs:  (Top)
Communities are just like families in the sense that just because we may want something does not necessarily mean that we are going to get it. Communities are a one size fits all approach where the needs of the community come before the needs of the person. There are rules of engagement, and behaviours and expectations, rights and responsibilities that require us to fit into the community that we participate in. A community may also have a different agenda to the communities that it is a part of as well as the various communities that make up that community. As a result the outcomes of the policies of the community may be positive and beneficial to that community, and in the process, disadvantage other communities that are a part of that community. We see this in all parts of society, where the needs of one community come before the needs of other communities that are a part of the community. Within WA there are different communities that have different needs. The health community has different needs to the disability community, the mining community has different needs to the farming community and the business community has different needs to the recreation community. How do we balance the needs of the different communities that make up the society in which we live?

Communities (clubs, businesses, services and organisations etc) also have internal needs as well as external needs. This distinction has often been misunderstood, and as a result, communities often treat these needs the same way. Internal needs are essential to the community fulfilling its role in society, external needs allow the community to participate in society. While external needs are essential to the survival of the community, they are not essential to the role of the community. External needs are needs that do not need to be sourced within the community, While communication is an internal need, the type of communication used is an external need. While transportation may seem to be an internal need (to get from one place to another), it is an external need, unless the role of the community is to provide transportation. Communities that do not prioritise these needs often find that their role becomes blurred, unfocused or to generalised. This also creates a state of imbalance within its own role in society, and the roles of the other communities that it associates with in society. We see communities taking on roles that are already provided by other communities. Societies are probably responsible for this blurring of community roles. Social values, attitudes and expectations dictate government policy and practice in determining what a community can and can't do.

... Internal:
The community needs to function as a community. The principles described above allow the members to participate with each other as a community.
... presence and participation - the community must see itself as a community by its members and others within the wider community.
... space (physical or virtual) - defines the arena of the community.
... leadership - leadership defines institutions of the community.
... goals - provide a sense of direction.
... boundaries - allows the community to define itself as a community.
... safety needs - members feel that they can call on other members in times of need or when threatened.
... belongingness and love needs - ownership, shareing, affection, relationships, etc.
... esteem needs - self-esteem, values, expectations and behaviours, etc.
... self-actualization needs - empowernment, realising potential, self-fulfillment.
(Adapted from Abraham Maslow's Hierarchy of Needs)

...External:
What factors influence the way the community fulfills its internal needs?
... government policy and practice - rules, regulations.
... available skills and resources within the wider community.
... relationships with other communities - how do other communities advantage or disadvantage the community?

Personal needs:  (Top)
There has been a great deal written about needs.
Frederick Herzberg's motivation theory
David Mcclelland achievment motivation needs theory
Abraham Maslow's Hierarchy of Needs

... Hierarchical:
Marslow describes needs as being hierarchical. There has been much discussion about the relationship of one need to the other needs, however, I don't think that anyone will disagree that these needs are real. A person may, or may not, have to satisfy one or more needs in order to achieve another need.

... Motivational:
Needs are often prioritised according to what we are doing, and the amount of motiviation we have in achieving that need.

Motivations can be ...
Internal: where need is more important than the activity that we are participating in.
External: where the need comes from, or is related to, the activity that we are participating in. External motivations also come from our family, where we work, our peer group, the radio and TV.

An example of the above is where I, and my family are hungry. My internal need is to eat, however the external need is to feed my family. I may choose to prioritise the needs of my family over my own needs. I may also satisfy my own need in order to have the strength etc., to satisfy the needs of my family. Whatever the motivations are, they are all designed to fulfill a particular need. Whether the need is physical or psychological, or there is a choice between fulfilling one or more needs, the reality is that nothing much happens until that particular need is fulfilled.

... Rights:
Rights are not something we should take for granted, they are not given to us on a platter. Throughout history we see that rights are fought for and the battle is ongoing to keep those rights. These so call rights can be taken away from us at any time (and often are) by the society/community in which we live. There is a Universal Declaration of Human Rights, for example, that is put in place to protect a person's basic needs. But how often do we see these rights ignored or circumnavigated when a particular agenda of a country, community or government is propagated. Australia is just as guilty as anyone else in this respect. This happens all the time with groups of people such as the "Boat People", some ethnic groups, people that have alcohol or drug dependency problems etc. These people are generally assigned a devalued label, role or status that serves as justification for their treatment. Only by fighting for their rights can a person achieve anything. Even within hospitals, nursing homes, hostels, service organisations etc., we see these basic rights (needs) are not being met because of funding issues, staff issues, lack of skills and resources etc.

People with disability (intellectual, physical etc.) are disadvantaged in that they often need professional support in fulfilling their personal needs that are not available in the wider community. This professional support can come in any number of forms, shapes and sizes.

The Disability Services Commission (Disability WA) is in the process of developing a Disability Access and Inclusion Plan that is designed to provide a standard of service delivery, where service users receive the most appropriate care in providing the best outcomes for the person. Schedule 1 (below) is a set of principles (rights of the service user) that guide service delivery

Schedule 1 — Principles applicable to people with disabilities
1.) People with disabilities have the inherent right to respect for their human worth and dignity.
2.) People with disabilities, whatever the origin, nature, type or degree of disability, have the same basic human rights as other members of society and should be enabled to exercise those basic human rights.
3.) People with disabilities have the same rights as other members of society to realise their individual capacities for physical, social, emotional, intellectual and spiritual development.
4.) People with disabilities have the same right as other members of society to services which will support their attaining a reasonable quality of life in a way that also recognises the role and needs of their families and carers.
5.) People with disabilities have the same right as other members of society to participate in, direct and implement the decisions which affect their lives.
6.) People with disabilities have the same right as other members of society to receive services in a manner that results in the least restriction of their rights and opportunities.
7.) People with disabilities have the same right as other members of society to pursue any grievance concerning services.
8.) People with disabilities have the right to access the type of services and supports that they believe are most appropriate to meet their needs.
9.) People with disabilities who reside in rural and regional areas have a right, as far as is reasonable to expect, to have access to similar services provided to people with disabilities who reside in the metropolitan area.
10.) People with disabilities have a right to an environment free from neglect, abuse, intimidation and exploitation.
(Disability Services Commission's Disability Access and Inclusion Plan 2006-2011 [DOC 639 kB])

As mentioned earlier, these service providers are communities in their own right (Characteristics of the service provider), and have their own needs in providing for the needs of its members. How the needs of the members are met, depends on how the service meets it's own needs.

... Responsibilities:
With any set of rights there is usually a set of associated responsibilities. Just because a person may have the right to decision making, for example, does not give them the right to take illegal drugs, abuse others or jump of a cliff. Just as any other member of any other community is restricted in what they can and can't do, people who live, work or participate in social activities in a community of a service provider are restricted in what they and and can't do.

Community needs and personal needs:  (Top)
From the above it can be seen that there is very little difference between the needs of a community and the needs of the members of the community. Personal needs often conflict with each other in our lives. Sometimes we need to make some hard decisions about which needs come first. Communities are just the same in this respect. Which needs come first? The needs of the members or the needs of the community? Are the skills and resources more important to the needs of the members or the needs of the community? What skills and resources can be provided within the wider community? How does government policy and practice impact on the community filfilling those needs?

Communities within Communities:  (Top)
Within most communities there are communities (sub groups) that share certain characteristics.
People generally socialise with others that have the same
… Shared characteristics such as culture, age or gender: people identify more with others their own age etc.
… Roles: teachers generally socialise with teachers and students generally socialise with students.
… Goals / Interests / Behaviours: people identify more with others that have shared goals, interests or behaviours.
… Religion or culture.

Within a suburb we see all sorts of communities that share and compete for various resources. There are sporting, elderly, professional, administrative, service comunities etc, that generally work together to provide for the needs of its members. When looking at the characteristics of a community, any other communities that are a part of the community need to be considered. How do the characteristics of each community enhance, or conflict with the other communities of which they are a part. A football ground is going to be built in a suburb. Which communities will benefit and which communities will suffer? Would the resources be better used in providing another type of facility for the community? Would the football ground be better located in another community?

With the introduction of new technologies and population growth, communities are becomming less isolated and more dependant on other communities. The expression "World Community" is becomming more relevant today where the actions on one community has greater effects on other communities. Climate change, free trede, oil prices etc are examples of how comunities need to find sollutions to issues on a global scale. Even in Australia, we see events such as the drying up of the Murry river having an impact on how the respective communities see themselves and interact with the other affected communities.

Companies and businesses are also having to redefine their roles within the wider community. Mining and industrial companies are required to operate in a more socially responsible way in supporting there own employees as well as the other communities that may be involved. Just as in Japan, where companies provide a whole of life approach to supporting their employees, Australian companies are creating whole communities where the members are a part of the community as well as the wider community.




The role of the community  (Top)

Communities are as varied and individual as its members. The role of the community provides the members with a sense of belonging and purpose. Community roles can be active in providing a service, supportive, where the members support the activities of another community, or a mixture where the members share experiences, resources, skills and knowledge with each other. Communities can be recreational, and provide a social role in enabling its members to participate in various activities, or provide an educational role in providing its members with knowledge, skills and resources. A community could also be a service provider, an organisation, a local community group or any service that supports people with high support needs (Characteristics of the service provider), or fulfill any other role that is valued in society as well as other communities that it is a part of.

Valued roles provide a common cause or focus for the community. The members develop a sense of pride and purpose in being a part of the community that bond and strengthen the community. The role is valued in a sense that it brings something to the wider community that it is a part of, as well as the members of the community. Valued roles are also about community leadership that is intouch with the community and can create a feeling of importance within the members.

... Community members that support disadvantaged people in their community are valued by those people, as well as the community that they are a part of, Meals on Wheels etc. Members offer support and provide a service in helping others in their community. I remember the LIONS club was involved in supporting people in the community. It is possible for any community to institute this culture. We often see this happening spontaneously in communities where a member is sick etc.
... Recreation communities are valued within the wider community in providing a means for its members to participate in activities, develop skills, share experiences and and friendships within the activity.
... Supporters that support a sporting club are valued by the club and have a valued role in the club. The club also has a valued role in the wider community.
... Volunteers that work for and support organisations are valued by the organisation and have a valued role within the organisation.
... Events such as 'Clean up Australia' provide a valued role for communities and groups to clean up Australia.

There are lots of other examples of communities and groups that have a valued role.
This can happen in any community where disadvantaged people can be included in activities through various strategies.
By providing a valued role for a community (living, recreation, education or employment) through some form of participation where a person is included in the community (active role), rather than the current model (supportive role), the community learns new values and skills in supporting people people with high support needs.

Minority communities generally have devalued roles in society. These communities have a charecteristic, agenda or function that is not representive of the society in which the community participates.

The value of those roles are influenced by a number of factors:
External:
... Government policy and Government roles within the community
... the function of the community within the community that it is a part of
... how the community sees itself
... how other communities see the community

Internal:
... cultural factors
... learned behaviours
... available skills and resources

By providing valued roles for the community,
Where the community has:
... ownership of its members, where all members are a part of the community and connect with each other
... a sense of purpose, where all members have a common cause that is valued by the community
... a sense of self determination, empowered
... valued social roles for its members (SRV)
... the skills and resources to provide for the needs of its members
... the ability to share skills and resources with other communities that it is a part of
The community has the opportunity to grow and prosper.

Community valued roles:  (Top)
Each community has a particular role that fulfils a particular need.
Valued community roles provide a common cause or focus for the community, as well as other communities that are a part of it.
Valued communities provide valued roles for their members.
Social role valorisation provides valued roles for ALL members of the community.

Communities that have valued roles in society …
... The spiritual community
... The family community
... The living community
... The recreational community
... The learning community
... The employment community
... The health community
... The internet community
... The blind community
... The disability community
etc
The values of community start in the home where children have valued roles in supporting others at school, sport or any other community that they participate in.

Communities that have de-valued roles in society …
... The AIDS community
... The drugs / rave communities
... The criminal community
... The gay / lesbian communities
... The Muslim community
... The bikie community
... The street community
... The unemployment / homeless communities
... The aged community
... The single parent community
etc

The roles of the members of the community:  (Top)
Just as a community has valued/devalued roles in society, the members also have valued/devalued roles within the community. These roles provide the members with a sense of purpose in achieving the goals of the community. Members with low valued roles are generally marginalised in the community.

Valued roles:
Teacher - student, doctor - patient, painter - art lover, friend - friend all suggest there is a positive co-relationship between the roles. Other roles such as policeman, politician, professor, accountant, fisherman, businessman, banker all suggest a value in providing a service within the community. How these roles are practiced depends on the person in the role. A policeman or banker for example have valued roles, but may use the role to their own advantage in abusing his/her power or stealing money.

Devalued roles:
Devalued roles are usually assigned to people that do not fit into the community (marginalised). These roles describe a negative characteristic of a person that sticks out. Others may also be assigned the same role (labelling) in order to legitimise or justify the person or group being treated differently to others in the community. Deviant, sick, druggie, dole bludger etc. are some labels that are used to devalue a person or group.

We all play a role in each community we are a part of. A father in one community may be a teacher, worker or a painter in another community. The value of the person's role is determined by the expectations of the community in the person fulfilling that role. Sometimes other roles are assigned to members where they do not come up to those expectations of the others in a community. They may have a particular characteristic that is different to the others, or need special support that is not available within a community. If the person does not have something of signifance to contribute to the community, that person will be treated as different (asigned a devalued social role).

SRV (which itself evolved from the concept of Normalisation) is probably the most influential social paradigm used to provide a better life for people with disability. The idea of Normalisation (where all members of society have the same right to a the same way of life as others within that society) has been around for a long time. It has only been in the last 10 to 20 years that we have had the incentives, skills and resources to provide for a more humanistic approach to meeting needs of disadvantaged people in society. SRV is about social roles. Society tends to group people into different classifications or groups according to a particular characteristic of a person that stands out. Regardless of the persons individual differences. society generally assigns a particular role to all people that share that characteristic. This role describes the persons behaviours, and how we should associate with the person. Roles are also a way to visualise the person and what we may expect from the person. Some social roles are positive. Hero, friend, supporter, defender of the faith, aussie battler, statesman etc all create a positive image of the person. Accordingly they are treated with respect and considerstion as valued members of society. Whether they are good people or not, is not as important as their social role. Other social roles are negative. Druggie, criminal, nigger, deviant, sick, dole bludger, alcoholic etc all create a negative picture or impression of the person, and as a result, the person will be negitavely valued, and treated differently to others, regardless of any other positive characteristicts the person may have. SRV shows us that disadvantaged people were devalued by society, and that by changing the way they are seen (their role), we change our behaviours and expectations, and add value to their lives by giving them the opportunity to participate in valued relationships and activities. Person Centered Planning, the Least Restrictive Principle and Transitional planning have all evolved from the principles of SRV. Each model is designed to allow (or facilitate) positive behaviours and attitudes within society, where the person to be able to participate, as much as possible, within each community that most suits the person's needs. These models of care could be thought of as the vechicle, SRV is the engine that drives each model of care, and government policy and practice serves as the highways and byways.

Community participation and inclusion:  (Top)
Community participation is about the community participating in the activities of its members.

A football club, for example, has a strong supporter base. The community of the football club is not only the facilities, players and members, but also the supporters. The football club has a valued role in the wider community and the players and members feel a strong sense of purpose and connection with each other, the club, as well as the wider community. Now imagine that a person with a severe disability was a part of that community, and was supported (through various strategies) by that community in the activities of the community. The person may live in a community of a service provider, or the wider community (a community home, facility, hostel, special home etc.) with other disabled and able people. Through the development of a valued role as well as having the skills and resources, within the football club community, the person then has the opportunity to become connected with that community.

Alternatively, if I go to a football match with some valued friends, I am temporarily a part of the football community. I may know some of the others there and have conversations with them. The community that I feel a part of may be my friends and I have no real connection with the others participating in the activity (the players or the others watching the game). I could also be a strong supporter of one of the teams and feel a part of that community. The value I place on the others participating in the activity would depend on which side they supported (friend or foe) and their role in the activity (may be an umpire etc.). Through the principles of SRV the person may be treated with respect and consideration and valued as a spectator or supporter at the game (his/her role), however, the community that he/she is a part of is determined by his/her connections (shared experiences and valued relationships), rather than the physical presence within the community.

"The idea of community is a powerful one, but there is more than one model of community and for this reason and others, many ways to help develop community spirit. At the end of the day, it is a question of how we choose to identify ourselves and whether, as groups and individuals, we feel we belong. Not all communities are constructed around places, but many of them are, although sometimes the place in question is the one we have left behind. But the notion of community spirit within urban places is still important, for the places we inhabit us. For this reason, the final conclusion here is that the Department for Victorian Communities might consider extending its activities to work with other agencies on place-making, on understanding the links between local economies and local identity, and in promoting public forms of social life in the urban public realm."
(COMMUNITY, PLACE AND BUILDINGS - The Role of Community Facilities in Developing Community Spirit - End note)

By providing valued community roles (active role, ownership, SRV etc.) at each level of participation, the person then has the opportunity to become a valued member of each respective community that the person participates in, i.e.: the community of the service provider, recreational community, educational community or employment community etc.

Moreover The CLP Recognises "Community Participation and Inclusion” is much more thansimply living in the community. This doesn’t ensure that you will be included in it, or that you will automatically have a participatory life.  The CLP understands that people who have a disability can live very isolated and segregated lives.  Many of the 'special services' that have historically been put in place to assist people with a disability often have the impact of promoting their isolation and exclusion by congregating people in groups with other people who have disabilities and segregating people away from community members.  A true indication of someone’s real inclusion is when they are welcomed as being a highly valued member of their local community.
(Community Living Project (CLP) - SA)

Empowering Communities in Disadvantaged Urban Areas: towards greater community participation in Irish Urban Planning? Part II – summary 2007
Guidelines for Supported Community Inclusion, the HealthRight Project

Think of any community that you may be a part of (shopping, your family, down at the pub, at work etc.)
What is your relationship to the community?
What are your roles within the community?
What are the roles of the other members within the community?
What are your connections (shared experiences and valued relationships) within that community?
What are your expectations?
What are the expectations of the community?
What your skills and resources?
What are the skills and resources of the community?
What are the values of the community?
Do you value your community?
Does your community value you?
How does the community value your participation within the community?

Building values and relationships:  (Top)
Values and relationships are more than the skills or resources that we have. They are about caring and sharing. They are about feelings and experiences with each other. They are about understanding each other and looking past any differences we may have.

Nigel Brooks (Building Strong Relationships - Four Stages of Development, Four Phases of Connection) suggests there are 4 stages in a business relationship:
* Formation - getting to know each other
* Divergence - differing opinions, disagreement, and doubt
* Convergence - reconcilement, acceptance, and agreement
* Association - performing collaboratively or cooperatively
However the relationship can migrate to back to the divergence phase at any time.

Building blocks towards building values and relationships
... Trust
... Communication
... Respect for the other person
... Understanding the other person's point of view
... Sharing experiences
... Patience
... Acceptance
... Willingness
... Genuineness
... Assertive
... Diplomatic

Building community networks and relationships:  (Top)
There is no magic formula, things do not mysteriously happen. Community participation and inclusion is about the person and the community and building networks and relationships, and supporting those networks and relationships, where the person participates in and is a part of that community.

Community access
Its no good being a part of a community when you can't access the community.
Communication between members
Its no good being a part of a community when you can't communicate with others, or they can't communicate with you.
Community presence
Build a profile of yourself within the community so that others know you and have the opportunity to find some common interests.
Community participation
Understand the community. What are the activities, values etc. of the community. Find some ways where your involvement contributes to the community.

Above all else
Be yourself. Be genuine, honest. If your are not accepted in the community, then that community is not for you.
Be careful. By understanding the community and its members, we have the opportunity to avoid communities and situations that are not desirable.

People who do not have the skills and resources to build and maintain their networks are disadvantaged in that they no not have the opportunity to become a part of any community.

SRV is an important strategy in developing networks and relationships.
Often the person needs some training in some skills (life skills etc.) so the person can participate.
Community development. By encouraging the community through various strategies (ownership, providing the skills and resources, providing a valued role for the members in supporting the person etc.)

A good place to start is with a Local Community Group that has connections with various local clubs and social groups. Strategies can be found where a person can be introduced into the particular activity that most suits his/her needs.

Building community support networks:  (Top)
A community service and a community network:  (Top)
A community service could be described as:
... Hierarchical structure
... Shared formal/informal cultures, objectives, goals, policies, constitutions, unwritten laws or codes of behavior etc.
... Organised within a set agenda
... Set roles, behaviours and expectations
... Contains teams, groups etc.

A community service can be a government agency or department, a private organisation (NGO) or a business that provides a service to a community. The service can be professional or semi professional. Volunteer groups, church groups, service clubs, community groups are considered as semi professional because, 1) there is some sort of training, experience or criteria required to be a part of the group, 2) there is some sort of organisational structure involved in the group, and, 3) there is an agenda or purpose in the activities of the group. The primary role of the community service is to fulfill a need in a community. There may be other secondary roles that are specific to the service.

A community network could be described as:
... Lists of contacts, connections, associations or relationships within a community that a person is a part of
... Lists of community services in a community that a person can contact

The above shows that there is a vast difference in a community service and a community network.
... A community service is about the relationships of the service with a community
These relations are generally of a professional rather than a personal nature.
A person is generally employed to provide a service that is not available within the community.
... A community network is about the relationships of the members of a community with each other

The network:  (Top)
Networks are lines of connections, associations or relationships that we use in our normal daily activities (Charles Kadushin, 2004). We develop these networks by talking to others, asking questions and building a list of contacts. Networks are also about finding solutions, administrating policies and procedures, or lines of command or authority. They can be loose, adaptable and informal, or highly structured and formal, or both.

We generally have lists of
... Personal networks
... Social networks
... Recreational networks
... Educational networks
... Work networks
... Professional networks

Relationships with another person may be in one or more of these networks. These are generally used for a mutual advantage where there is something to share or gain from the relationship. One sided relationships usually do not last very long. Information that does not pass backward and forward in a network is not much good to anyone. When we move or get older, we lose some relationships and gain new ones. They are dynamic, always in a state of flux. These relationships can also be described as Primary (direct links) and Secondary, intermediate or Weak Ties (as described in Charles Kadushin, 2004 P.32), depending on our particular need and the needs of others at the time, within the network. These secondary relationships are just as important as the primary relationships. They define the arena (or playing field) in which a system of networks operate. This arena can include any number of communities that we participate in. At work, for example, we have the immediate community of people we associate with and the other communities that are a part of our work. There may be other offices in other suburbs or states that we have no associations with, however these secondary relationships define the arena of the network. The arena of the FIFA (International Football Association) includes all football clubs in all countries.

The role of the network:  (Top)
Just as our communities can be Personal, Social and Public, these lists can also be Personal, Social and Public. We have our work communities and the networks within that community, we have our recreation networks within the recreation community etc. If I wanted to have a game of golf, for example, I would most likely ring my golfing mate, unless I was after a promotion at work, or was making a deal with a client. If I were having trouble with my TV I would probably call a TV repair man rather than my golfing mate, unless he fixes TV's for a living. These lists are usually built up over a period of time. They change according to our experiences with the members on the list, or our needs.

The expression "Social network" or "Social networking" is used in the business world in describing a list of contacts of clients that is used to generate new business. There is a great deal of literature on this subject. The term "Social networks" is also used with regard to the new generations of communities that have evolved on the internet (Schuler, D., 1996,). Social networks within the disability arena are mostly concerned with creating professional/semi professional networks between services and consumers. This method is not useful in the context of this literature, as it implies an institutional approach to the relationships within the network (Antti Teittinen). These networks are mostly lists of contacts of government departments (Disability Services, Social Security etc.) service providers, professionals or volunteers that can be contacted when in need. These government services have their own networks, and rarely is there any overlap in these networks. These networks could be described as communities of specialty, where the Disability Services has a specialty, and the Social Security has another specialty etc. Other professionals may be a social worker, doctor, physio, social trainer, community support worker or any other that is a part of the disability service arena.

A service provider may have primary networks with Disability Services, Social Security etc., as well as its clients and families. Clients and families often become dependent on these networks in finding support for the person. People with high support needs often socialise with others within the service, or within the service setting. What interconnections exist between these primary and secondary networks probably determines the effectiveness of the service in providing for the needs of its clients. These primary networks are the mechanisms and relationships that provide direct intervention in the care. Secondary networks may be others that a person associates with within the service, the service setting or the wider community.

Because of the nature of the disability, they (people with high support needs) often have no choice in these networks, that are mostly of a professional/semi professional nature. The service setting may be a part of the service provider, another disability service for recreation, employment or education, or a setting within a business or company, within the wider community. A person that is supported in a work environment, for example, may have the primary relationship as a social trainer/aid, and the others who the person works with may be secondary relationship. Any other relationships may be of a secondary nature or intermediate. A volunteer that supports a person in a recreation service community may have no connection with the doctor who treats the person, however this does not mean that both are not in the arena of the disability service. Both settings may quite separate and distinct from each other, however there is a secondary (or intermediate) relationship between the volunteer and the doctor.


A network of support within the disability arena.

The role of the network in the club, group or organisation:  (Top)
The role of the club, group or organisation is to provide a setting that accommodates the members. Its no good joining a football group if we want to play golf, although we may meet someone else at the football group that wants to play golf. In this case the person may become a part of our golfing network instead of the football network, or maybe both. The primary role of a network is to provide us with a group of people that can be called upon when needed. There may be other secondary roles of the network that are specific the type of network. A social network will have different secondary roles to a professional network.

Networking is about meeting others that we share interests with or have some professional relationship with. The networks can be described as communities of interest, communities of practice etc., where there is some benefit from being a part of the network. It can then be seen that the principles and characteristics of a network are similar to the characteristics of a community: Network theory looks at the nodes and links that are created between the members, however, while these networks share the same principles and characteristics, they behave differently within different communities.

Principles of a network:
... Access: the members must be able to access the network
... Communication: the members must be able to communicate with the network
... Presence: the members must have some sort of relationship with the other members (see themselves, and are seen, as a part of the network)
... Participation: the members must have some sort of involvement within the network

Characteristics of a network:
... There is a common interest
... Are organised within a set of formal/informal beliefs, values, roles, expectations and behaviours that defines the boundary of the network.
... The boundary may be explicit (physical) or implicit (defined by the shared characteristics of its members)
... Hierarchical Structure
... Members have one or more roles
... There is some form of communication between members
... Have resources that are shared between the members
... Share and draw on skills/resources where needed
... May be a part of a wider network or contain mini networks

Networking is also about breaking the rules and finding shortcuts within the system, and creating new lines of communication and relationships within the current structure. When one line does not work in solving an issue, the network needs to adapt and find other links to achieve the desired outcome. Networking is also about strengthening old links (Gilchrist, A., The well-connected community, 2009).

The community support network:  (Top)
The best description of a community support network could probably be described as a "Community of Support", that includes all stake holders that have an interest in supporting a person with high support needs. A person with high support needs may have a number of groups, services or organisations that provide for the person's needs in different arenas of the person's life:

... A disability service or organisation
... A volunteer club or group
... A transport service
... A medical service
... A disability recreational group
... A business or community service that supports the person
... A school or university support service

The above would constitute the community support network for the person. From the above, it can be seen that this community support network contains a number of arenas that contains a number of networks. This develops naturally in our lives, and is taken for granted in our normal day to day activities. We often develop these communities of support without thinking about what we are doing.

Building the community support network:  (Top)
As mentioned earlier, people with high support needs do not have the opportunity to build these networks. A community support network could be described as:

A community group that enables all stake holders (through the development of skills and resources)
the opportunity to find solutions to meeting the person's needs in each community
the person wishes to participate in, and is appropriate for the person.


As mentioned previousley, a network is about relationships, and the connections between those relationships. A community support network or community of support is about a group of people within a community that support a person or a group of people within that community. Most of us already have these communities of support. Our family at home, the next door nieghbour, a group of work mates at work that we rely on, and even the local phone book are all places that we can find support or assistance. However, If the person had to solely rely on the phone book everytime they needed assistance, the chances of their needs being met are small, especially if they do not have access to a phone.

A person with a severe disability will have problems in accessing their own networks, and may need to rely on a community of support to provide the skills and resources the person needs. The various skills and resources may be available within the wider community, or provided by a specalised service or organisation that meets that need. If I need a lift to the shops, for example, I may be able to call a friend or a service that specialises in transportation (a bus or a taxi). If I can not get the appropriate transport, I can contact my community support network for help.

Gilchrist, A., 2009 provides a useful theoretical reference point in building a community support network.
"Community development is distinguished from social work an allied professions through its commitment to collective ways of addressing problems. Community development helps community members to identify unmet needs, to undertake research on the problem and present possible solutions." (Gilchrist, 2004, P.34).

Community development: a critical approach  Margaret Ledwith, Jo Campling 2005

Lee J. C., 1983, is a useful background reference in theory and construction of communities.

Schuler, D., 1996, has written a paper on building communication networks within an internet community. I feel that the theory is particularly relevant to building a support network for the person within the community.

The Queensland Government has an excellent resource on community engagement, which can be applied to the project.

Collaborative Thinking: Understanding Communities of Practice

Local Government Community Services Association of Western Australia
COMMUNITY DEVELOPMENT CONFERENCE, 4th – 6th December 2002
What’s Wrong With Community Building, John Murphy (Mornington Peninsula Community Connections), Joe Cauchi (Mornington Peninsula Shire)


Barriers to community participation and inclusion: (See Removing the barriers to community participation and inclusion)  (Top)
Sometimes this is easy, where the community is responsive and there are no major issues to be resolved. Sometimes this is hard, where there is more than one community that is involved, or there are government bureaucracy issues, legal issues, funding issues, medical issues, available skills and resources etc. Sometimes the community has issues, hidden agendas that need to be resolved before we can look at including the person. Sometimes it is just to hard.

Community sensitivity
A community may be unfamiliar with a particular characteristic of a person or a group. There may me some doubt or caution in accepting the person as a part of their community. Placing a group home with 3 or 4 residents in a suburb, gives the neighbors, others at the shops etc. an opportunity to become familiar with this group. Yes, they are still supported by a service, however they have a greater opportunity to participate in the normal activities of the living community.

Over a period of time the community that they live in may become desensitised to their particular characteristics and they may become more accepted in the community.

Skills and resources in the community
The main reason that disadvantaged people end up back in institutions (the buildings) is a lack of support and services in the community.
This can be for a number of reasons:
... A lack of community interest (values, attitudes etc.)
... A lack of community skills and resources (professional support, facilities, funding etc.)
... Government policy and practice (bureaucracy, lack of coordination between departments etc.)
... Community dependence on institutional care
... No other alternatives

Where do I start?
Plan the process: What are we trying to achieve in the process? What sort of participation are we looking for? If a person is looking for a social community do we place him/her in a sporting community? What support mechanisms are necessary and how do these mechanisms impact on the community?

Identify the target community: In many cases this is straightforward, however there may be other communities within that community. At school, for example, there is the community of the school, the community of the classroom, various social and sporting communities that all interrelate to each other on different levels. A person may be placed in a work community and be a part of that community, but not be a part of the social community and not develop any permanent networks within the social community.

Identify the stake holders: Who are the significant others? Who are the others that are in the reference group (others that are not directly involved, but are a part of the community).

The best place to start is at the beginning.
Introduce the person to the community leader, coordinator or the organiser.
Arrange for the community leader, coordinator or the organiser to introduce the person to others at a function or a social gathering that has been prearranged.
Plan the process with the community members where they take control.

Its to hard
I have heard this argument to often. A lack of understanding in, and planing the process means that the project is doomed to failure before it begins. High expectations are also to blame when we see things crumbling down around us. By taking one step at a time and involving all members in the process, where they take control (ownership), means that the project has a greater chance of succeeding..

It did not work
Its OK to fail. Only by learning from our mistakes can we have a better understanding of what we are doing right.
Some things to keep in mind :
... Does the community have the skills and resources?
... Does the person have the skills and resources?
... Is the community receptive?
... Is the community appropriate for the person?
... Is the person appropriate for the community?

The culture and institutions of the community
Probably the greatest challenge to the project. By understanding the community and how it works is the first step in the process.
... What are the formal and informal values, cultures and institutions that are a part of the community?
... What other communities are a part of the target community?
... How do the members interact with each other?
... What are the hidden agendas?

Community leadership
Probably the most important. Strong leadership that supports the community gives the community a clear direction and will often facilitate solutions.
Communities that:
... Are motivated.
... Have a clear, positive outcome: outcomes that are clear, attainable, and worthwhile to all members.
... Have committed members: all members feel a part of the process.
... Have effective communication: all members communicate to, and respect each other.
... Have coordination of activity: all members have clear valued roles.
are more likely to succeed.

Community leaders come and go for various reasons. We may think that a person is valued as a member of a community only to find that the person has lost those networks and has no support. This can be for a number of reasons for this, but the most common is that there has been a change of leadership. The person that was coordinating the activities has left and there is no one else motivated to continue on. The values, cultures and institutions of the community change. 

The way in which the process was managed
Communities are generally very protective of their values, cultures and institutions. Anything that does not fit in will generally fail.
When a group of people are introduced into a community
All members and stake holders may not feel a part of the process
They may be seen as a threat to the community.
They do not fit into the customs or institutions of the community.
The community may not have the skills or resources to provide for their needs.

Minority group
Scheerenberger, Narje, Wolfsnsberger and others have written extensively about devalued people. Only by letting the community find their own solutions can the project succeed. Failure to find valued relationships for a person with high support needs within the target community is not defeat.

Guidelines for Supported Community Inclusion, the HealthRight Project

The role of the gatekeeper in the community:  (Top)
The gatekeeper: (http://www.answers.com/topic/gatekeeper)
"1.  One that is in charge of passage through a gate.
2. One who monitors or oversees the actions of others.
3. A primary-care provider, often in the setting of a managed-care organization, who coordinates patient care and provides referrals to specialists, hospitals, laboratories, and other medical services."

In all communities there is some form of leadership, hierarchical structure or mechanism that:
... Provides the structure of the community
... Provides direction for the community
... Is designed to protect the members
... Is accountable to the community

The local police are invested by an act of government to protect the members of the community. A bouncer or security guard is invested by a social group or organisation to protect the social group or organisation. A community may have some sort of mechanism (a leader or group decision making process) that decides who is entitled to gain admittance and who is not eligible. The police, bouncer or security guard, or any other mechanism is also responsible for the welfare of the members of the group (the community). Anybody that does not behave according to the rules of the group may get removed.

The gate-crasher:  (Top)
Gate-crasher: (http://www.yourdictionary.com/gate-crasher)
"Informal: a person who attends a social affair without an invitation or attends a performance, etc. without paying admission"

Any person or group that tries to gain admittance without an invitation, approval or sanction risks being removed. Communities are no different in this respect. Any person that tries to force their presence in a community risks eviction.

The definition also states that there is a price to pay:
... Some form of currency or value needs to be offered in exchange for admission.
... Often people bring skills and resources that are valued within the community.
... There is a value in the person becoming a part of the community
... There is some form of negotiation between the gate-crasher and the community
... There may be some form of rite of passage or pass that entitles the holder to free admission

Where a person does not have any skills or resources to bring to the community:
... An organisation or service provider acts as a negotiator or a link in introducing the person to the community
... SRV is an important strategy in creating a valued role for the person
... The community may accept the person through familiarity, understanding and accepting the person.
... The community may accept the person by providing a valued role for its members in supporting the person.

A group of cyclists, for example may be riding along a road in a park. Along comes a person on a motorcycle and wants to join the group. The group may allow the person entry if known to others or there is some value in the motorcyclist being a part of the group, or may call (mobile phone) the police or security to have the person removed.

Communities are no different. If a person is known to others, has something of value for the members, or is able to negotiate entry, the person will be accepted into the community and become a part of the community. If the person is not accepted, he/she will be ignored, asked to leave or forcefully removed.

A community group or a community service?:  (Top)
A community group is where a number of people get together for a common purpose of interest. The group may provide support for each other, or support others that need some help in providing for their own needs. They share skills and resources to achive the goals of the group. There is a sense of purpose and achievement in the project, All members benifit in participating in the activity. There is a value in being a part of the group. While the group may provide a valued role, it is limited by the skills and resources that can be shared within the group. As a result the members may look to a business or service to provide a skill or resource that is not available within the group. A service is a business or organisation that provides specalised skills and resources to a community that are are not available within that community. The service is structured or organised around a need. This need can be transportation, home maintenance or anything that is not available to a person or a group of people. Services such as electricty, water, gas, telephone etc were originally (and still are in some areas) the responsibility of the person (they were not provided as a community service). The trend today is to encourage individuals (through subsidies or bonuses) to provide for their own needs as much as possible rather that relying on the service. This strategy reduces excessive demand on existing services that are unable, through various reasons, to keep up with population growths.

Originally human services were the providence of a family or group. They managed as best as they could. Over a period of time human services became so specialised within each area of care that they have become service industries within their own right. These services now provide important roles within society. They have the specialised skills and resources that are not available within the wider community. These days the trend is to shift the support mechanisims from congreate care to indivualised care. While the settings may have changed, these mechanisams are still there, where the support is provided by a service that is specialised within a particular area of care. As a result we see a multitude of services that support people in a vartety of settings that most suits the persons needs, as well as the needs of the wider communities that these services are a part of. People with high support needs that can not be supported within their community are still supported by a service that specialises in a paticular area of care.

I feel that a time where people with high support needs are are supported within their own communities will never return. We can change the settings and provide more appropriate supports where these groups have more opportunity to be more involved in local community activities, however, these groups will always have the support structures and mechanisms as a part of their lives. The way the support is provided is determined by the society in wich we live, as well as government policy and practice. This does not mean that a community can not be a part of the process. Who knows what will happen in the future. Will societies be the same as they are now in 100 years time? Will communities as we know them today still exist? Somehow I feel that the answers to both questions will be NO.

Whatever the future is, the reality is that we are living in the present and it is up to us to determine the future. Communities are changing in the sense that they are no longer bound by geographical locations. However, the idea of community is probally more important than at any other time. Communities provide the way we socialise with each other. They provide a way to share experiences, and relationships.

Having a local community support network can be the first step towards independence.

Rather than building new communities around people with disability, we should be building existing communities that have the skills, resources and valued roles, where people with disability are a part of their community.

A local community group (LCG):  (Top)
A better description of a group of stake holders that get together would probably be "local area group" or "a community network of support".
Representatives of the local businesses, recreational groups, youth groups, educational institutions and government departments get together to find the best solutions to enable people with high support needs to participate within each community that they wish to participate in. The community may be a local community or a part of a service provider who specialises in a particular area of care. The idea is to involve other local community services as much as possible in the support.

This has the advantages of ...
... all stake holders are a part of the process
... various issues can be discussed and solutions can be found within each community
... communities have the opportunity to become more familiar with these groups
... new patterns of behaviours are introduced into the community
... the community learns new skills
... existing community resources are used more effectively
... can create networks within each community
... is flexible in providing for the individual needs of each person, as well as each community that is most appropriate for the person
... provides the tools that help each community help themselves: policies, funding, training can be coordinated through a local group.
... services that specialise in a particular area of care can be employed to suit the needs of the person and the community.

CLAN WA is a community support group that provides skills, resources and networks to disadvantaged people in the wider community so they have the opportunity to develop valued relationships and shared experiences.

... Management committee: comprising of professional, and non-professional (family, volunteers and other community) members.
... Social worker: manages and coordinates day-to-day tasks.
... Roles
... Links with volunteer groups, support services and businesses in finding the appropriate community activities for the person
... Liaisons with other community groups (schools, churches. youth etc.) where possible.
... Acts as a link in developing community networks (morning teas, social outings etc.)
... Provides training and skills for families, in coping with and overcoming their situation
... Provides referrals to other professional resources where appropriate
... Negotiates between other community services and families according to their needs
... Provides workshops etc. for stake holders in the community

A LCG is a community support group that helps people help themselves.
The model below provides support for all stake holders in supporting people with high support needs. This model includes representatives of each community (educational, recreational, employment etc.). By including these groups, a more comprehensive approach can be made to finding the best solutions within each community that a person wishes to participate in.


Note: model is based on CLAN WA (Click on image to view detail)

The Local Area Coordinator (LAC) ...
... acts as a government representive within a number of groups within an area.
... act as a link between the various local, state and fedral government departments: housing, business, employment, aged care, child care, community services etc.
... acts as an advocate/lobbyist on behalf of the groups about issues in government policy and processes.
... coordinates the activities of the group with other community groups within an area.
... acts as an arbitrator/mediator where issues arise within the group.
... provides direction for the group.

An empowered community:  (Top)
"Community empowerment refers to the process of enabling communities to increase control over their lives." Community empowerment : World Health Organisation, 2010

An empowered community has the ability to effectively respond to the needs of its members.
This is NOT ...
... a sense of independence or dependence on other communities that it is a part of, or are a part of it - communities complement each other and need to work together in fulfilling the needs of their members.
... dictating to community members what they should or should not be doing - there needs to be a sense of shared ownership and responsibility within the community.
... dictating to other communities what they should or should not be doing - there needs to be a sense of shared ownership and responsibility within society.
... using skills and resources to the detriment of other communities - skills and resources don't get used responsibly or effectively.
... growing or expanding - is not an end, but a means to an end.

Empowered communities ...
... have shared goals, beliefs, values, cultures, institutions etc
... have ownership of their members
... provide valued roles for their members
... communicate effectively with their members
... can depend on their own resources
... balance their own needs
... can share and draw on skills/resources where needed
(See Understanding communities, Dysfunctional communities)

Having said that, communities are not perfect places. They are arrogant, dynamic, protective, stubborn, irrational, ungainly, bureaucratic, self centred, hypercritical, subjective ,,, and the list goes on and on. While communities may have some of these features, you can't really blame the community. Just as a chain is as strong as the weakest link, communities are only as strong as its leadership.

Strong leadership
... determines the direction of the community
... provides a valued role for the community and its members
... provides a set of outcomes which are measurable

Community rights and responsibilities:  (Top)
Communities also have rights and responsibilities, both to the members of the community and other communities that they are a part of. An empowered community understands these relationships and how these relationships impact on the community, and other communities that are a part of it.

Rights:
... the right to its own identity
... the right to set its own agenda, constitution and institutions
... the right to participate within the wider community
... the right to access skills and resources within the wider community
... the right to support its members within the wider community
... the right to protect its members from influences that disadvantage its members
... the right to refuse entry to members that do not fit into the community
... the right to evict members that do not accept the agenda, constitution and institutions of the community
... the right to refuse skills and resources to the wider community, where its members are disadvantaged
... the right to determine its own destiny

Responsibilities:
... to ensure the agenda, constitution and institutions of the community, protect and support its members, as well as other communities and their members
... to provide a safe, secure environment for its members, as well as other communities and their members
... to facilitate the development of valued roles and relationships for the community, its members, as well as other communities and their members
... to ensure that the community communicates with its members as well as other communities and their members
... to ensure the community does not disadvantage other communities or their members
... to responsibility use, and share, skills and resources to the advantage of its members, as well as other communities and their members
... to respect, protect and promote the rights, cultures and institutions of other communities and their members
... to engage with other communities in an interdependent relationship

We know from our own experience that the above rarely, if ever, happens. Most communities are reactive, rather than proactive. Its only when something happens that has an impact on all members of the community that anyone is inclined to do anything. Small issues can go on for years without being a threat to the community. It is only through some form of social activity that draws the attention of the community to the issue, that solutions can be found. There is also the problem that any solution is generally not representative of the community as a whole.

Issues such as ...
... poor leadership - lack of direction, lack of focus, power plays within different groups, lack of communication and negotiation
.... the institutions of the community - while important to the stability of the community, they often act as the breaks, where the community is not accepting new ideas or innovations that allow the community to effectively respond to the needs of its members. Cultures, class divisions, set ways of thinking, patterns of behaviours and expectations all determine the way the community treats its members.
... ineffective management of skills and resources - lack on coordination, uneven distribution, shortages, trying to do to much, or doing to little, competition of existing skills and resources
... ineffective planning - growing to big to fast
... competition with other communities - communities generally view other communities and groups with suspicion, or as threats, rather than allies and assets.
All impact on the ability of the community to provide for its own needs, the needs of its members, as well as the needs of other communities and their members.

Growth and expansion:
Is not a goal or ideal that a community should aspire towards, but as a way to provide for the needs of a community. Growth and expansion is not an end, but a means to an end. As the member’s needs increase, the community needs to find new ways to meet those needs. It may need more space, skills and resources. Often growth and expansion works to the disadvantage of a community, where its existing resources are stretched to the limit. The community becomes unfocused and uncoordinated. Community growth and expansion is dependent on existing skills and resources that are within the community as well as the communities that it is a part of. As a result programs are substandard, or do not get finished. Communication breaks down. The community may become fractured where needs are not being met. Different groups compete for leadership which creates social unrest, and even the social dislocation of some groups within the community.

Community relationships:
Community roles determine the relationships with other communities, and the way we interact with others within those communties. Interdependent relationships are mutually inclusive, where we share skills and resources to benefit all members. Rather than interdependent relationships with other communities, we see codependent, independent and dependent relationships evolving. Communities that are codependent, independent or dependent are often inefficient and ineffective in providing for their own needs. You may say that independence and empowerment are the same things, Nothing could be further from the truth. No one is truly independent. Independent relationships are mutually exclusive, where we do not share with others. Codependent and dependent relationships are about being dependent on each other or one person in a relationship. Communities are no different.

Competition:
Competition encourages people and communities to aspire to greater things. Competition also unites members toward a goal. It inspires members to achieve things that they would not do normally. Communities also have the opportunity to learn from the achievements, and also the failures. How could things have been done better? There is also a sense of frustration in the community not achieving its goal. How the community deals with the frustration is determined by its social construction. Competition can also destroy communities. Where the goal becomes more important than the means of the community to achieve the goal, the community can fall apart very easily.



The role of the buildings in the community  (Top)

The community of the building:  (Top)
A building is not just a building (unless it is empty). It is a community. People socalise with each other and build temporary and permanent relationships. A culture (1) of cooperation and participation evolves that allows the members to function as a group within the building. People with intellectual disabilities were historically (and to some extent still are today), housed in hospitals, refuges, nursing homes (and in some cases prisons) etc. that were referred to as institutions. These buildings were horrible places, many were crowded, unsanitary places that were highly ordered and structured along medical/military lines. To cope with the large numbers of people, the culture allowed a small number of staff look after the residents basic needs. There was no room for other needs such as privacy and dignity that we take for granted these days.

Today, we see that hospitals, refuges, nursing homes and prisons etc. are generally different places (although there are still some examples of nursing homes and prisons that are not desirable places) and they fulfill an important role in our community. Even today these buildings share the some of the characteristics as described by Wolfensberger in his paper "The Origin and Nature of Our Institutional Models". This does not mean that we have to pull down these buildings for the sake of progress. It does mean that institutions and the buildings are an important part of our community. We see refuges for the poor and destitute, hospitals for the sick and injured, schools for education, large boarding houses for students, nursing homes and retirement villages for the frail and aged, even churches for worship, factories for workers, and prisons for criminals etc. These buildings are designed to support large numbers of people in the most efficient and cost effective way, and therefore by their very nature will involve some sort of process of institutionalisation.

Within the community (cities, towns, suburbs etc.) we see a variety of types of buildings and settings that are used for accommodation. We see large high-rises, apartment blocks, villages, estates, units etc. that are mini communities within the wider community. These are all designed for specific purposes and fulfill specific needs within the wider community. To a certain degree people choose the setting that most suits their life style, and sometimes there is no choice in the matter. Each style of living has its own advantages and disadvantages.

Most of us only spend a short amount of time in institutional care (school, or hospital etc.), and we have our own families and lives to return to. The needs of  people that have a physical or intellectual disability are as varied as the people themselves. There will always be people with disability that need part/full time care, respite, specialised services etc. Some need only a small amount of care, and others need full time support, and spend their whole lives in institutionalised care. Lets be realistic in providing the most appropriate care, in supporting people that have a physical or intellectual disability. Of course there will always be facilities that support groups of people (group homes, nursing homes, respite centers, boarding houses etc.), but that does not mean that these facilities are not a part of a community.

"As the discussion developed, interesting questions emerged, for example:
… Are community facilities valued locally?
… Do they serve a broader community benefit?
… Do multi-purpose facilities or the co-location of services contribute to positive community outcomes more so than individual facilities?
… Is the building of community facilities the only or best way to promote stronger communities?
… Is it possible to identify an approach to the building, design and management of community facilities such that community outcomes are not only delivered but become self-sustaining?
(COMMUNITY, PLACE AND BUILDINGS - The Role of Community Facilities in Developing Community Spirit - Introduction)

The building and the community:  (Top)
Just as a carpenter may blame the tools for the poor workmanship, societies may blame the tools that are used in supporting disadvantaged members in the community. The building is an inanimate object, what we do with it is up to us. Just because a building is designed a certain way, and there are all sorts of support mechanisms in place, does it mean that the building is any better than some other form of reasonable accommodation (The reference is to normal living spaces that accommodate groups of people, large dormitories of 20 people or more are rare these days but may exist - probably a youth hostel), or that members of the community of the building are automatically members of, and supported within, the wider community?

I think not ! In some circumstances a person may be worse off, where the person has lost the connections, networks and valued relationships within the community of the facility that he/she was once a part of.

A person that is living in a single person dwelling, for example, would need some basic skills in maintaining the dwelling as well as personal living skills. The person would also need to be able to access various facilities (shopping, work, recreational, education etc.) in the local community in which he/she in living. Any assistance would need to be provided by family, volunteer or professional help. Either way, the person has to arrange the assistance (depending on the person's needs) with others that are providing the service. If the service is provided by a service provider, the person also has to fit into the service provider. The staff of the service provider provide the service, which means that the various formal/informal cultures, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behavior etc., become a part of the normal routine of the dwelling. There are reports, care plans, medical charts, drug sheets, time sheets etc. Staff may provide 24 hour support which means that there may not be a consistency of care. Alternatively, the person may be only supported a few hours a day which means that the person may be left by him/her self with no company for the rest of the day (which does happen).

People with high support needs (aged, severe disability, drug rehabilitation etc.) will need more intensive care and more structured settings. They are restricted in what they can and cant do and are dependent on others. Whatever the building is that they live in, because of their condition, they will never be able to live independently.

Rather than build better individual housing, supported accommodation etc., maybe we need to build better communities that are more able to fulfill the needs and provide valued roles to its members. By promoting institutions as an important part of the community, we can develop a more appropriate (and holistic) approach to balancing the needs of people that have a physical or intellectual disability with the needs of the community that they live in, i.e. people are placed in accommodation that is most appropriate for their needs, as well as the needs of the community in which they live.

"On the one hand, some critics have argued that deinstitutionalisation has resulted in at best reformist housing models and at worst exclusionary housing processes that have ‘transposed the same structures, routines and cultures of institutions out into community settings’ (Chenoweth 2000: 85). By contrast, other groups feel that deinstitutionalisation has been too transformative. In particular, some relative/advocate associations have sought to counter community care debates with an alternative construction of ‘reform’ that centers on the ‘re-creation, not closure, of institutions through systematic improvements to infrastructure and services’ (Gleeson & Kearns 2001: 66). As we have noted, such countercurrents have successfully (re)conditioned the course of human service reform and, in some states, reopened a policy-political ‘space’ for congregate care.
In summary, Australia’s future phases of deinstitutionalisation are certain to be contested by different socio-political interests. As a consequence, the housing futures of current institutional residents are likely to be contested and – for some service users – may not involve significant change to the place and form of their care. Moreover, the rehousing of some institutional residents may be delayed by the multiplicity of interests and support claims that will confront policy makers and service agencies in the future. Whilst we do not support the continuation of orthodox forms of institutional care, the contest over housing futures that is increasingly apparent in Australian policy realms may not in itself be a bad thing for service users.
Indeed, promoting participation by all stake holders in decision-making is a cornerstone of social inclusion and essential to ensure that everyone can gain access to the housing and support services they need to achieve their own potential in life. This means that a contested rehousing process will be constructive if it produces reflective rather than conflictual service reform. Much will depend on how service agencies manage discussions and consultations about policy development (see Gleeson & Kearns 2001 on this). A more reflective mode of reform is, in our opinion, more likely to produce heterogeneous not formulaic housing and support options for people in care. A diverse and flexible community care housing landscape will be better equipped to meet the individual accommodation needs and desires of service users and thereby enhance social inclusion." (Contested Housing Landscapes? Social Inclusion, Deinstitutionalisation and Housing Policy in Australia)

Think of the facility you are living in:
Is it a single dwelling, shared accommodation, a town house, a boarding house, an apartment or in a block of flats?
Where is the facility located?
Do you enjoy living in the facility?
What networks and valued relationships do you have within the facility?
What networks and valued relationships do you have in the wider community?

The building and the institution:  (Top)
An institution is generally referred to as a large building where people lived in groups (50 or more). These were divided into large areas where all members of the group participated in the same activities, were dressed the same, were expected to behave the same and were all treated the same. There was no room for individual needs as staff ratios were 1/20 or more.

People with low support needs were grouped with high support needs and were all treated the same. They were treated in terms of dollars and cents, rather than individuals. There was very little contact with the outside world. They lived most of their lives in isolation. Government policy contributed to this, where people to be deemed as not able to look after themselves where placed in these facilities, they were institutionalised.

While institutions (the buildings) are often thought of as horrible, evil places that disadvantaged people are locked up in, these buildings had particular roles:
1) to provide for the needs of its members
2) to protect it's members from society
3) to protect society from it's members.

Through the influence of N and SRV we see that the buildings are generally different places and the members have different roles within these buildings. However these buildings essentially fulfill the same roles within society. People with high support needs will always need more support than people with low support needs.

While the wider community and the institution (the building) may be separate from each other, this does not invalidate the fact that the members of the institution communicate with each other, participate in activities within the institution, and generally share the same characteristics as a community. In fact, these institutions that Goffman and others wrote about are communities in there own right, just as any other community, in that the members are inter-dependent on each other, have a hierarchical structure, are organised within a set of formal/informal beliefs, values, roles, expectations and behaviours etc.

The reality in supporting people with high support needs:  (Top)

Medicine, technology and standards of living have increased dramatically over the last 20 years.

People are getting older, living longer and generally healthier these days (whether our quality of life is any better these days is still debatable) and our social and moral standards and responsibilities are intended to protect the sanctity of human life (also debatable depending on a person's ideology or rationalisition). The number of people with high support needs grows daily. The burden on existing resources is also growing. The poor are getting poorer, The divisions between different groups is increasing.

The trend in some societies is to provide a standard of life style to people with disability, where they are respected and treated the same as others in that society. This is evident in providing accommodation that is normal for the majority of the population in the society in which they live, where, by providing individualised accommodation, the person is supported in the most appropriate way (N, SRV, PCP, the LRP, TP etc.). Groups such as low income, pensioners and the unemployed are forced to compete with the aged and people with a mental illness or disability for limited resources. Housing is becoming more unaffordable for these groups each year. Where are they going to live? Do we really care? As long as people with an intellectual or physical disability have a place to live.

The goal of disability policy is to allow the person to be able to participate, as much as possible, within each community that most suits the person's needs. Expressions such as  "Community Living" and "Living in the Community" have become popularised as trendy slogans that legitimise and validate the various the roles of the organisations and services, that have replaced the buildings, in providing for the needs of people with high support needs in society. But what do we actually mean by these slogans? Communities are an essential part of the way we live, they provide the skills, networks and relationships we need in satisfying our other needs, and it could be argued that the more communities that a person is a part of, the richer and more diverse his/her life will be. Most people have at least three or four communities that they are a part of (family, social, recreation, employment, spiritual etc.). These communities allow us to participate in activities, share experiences and have the opportunity to become valued as members of each community that we are a part of. The reality is that People with high support needs need specialised support structures that are able to provide for their needs. While these supports may be available in the social sense (the society that they live in), they are rarely available in each community that the person wishes to participate in. Technological developments and innovations (drugs, equipment, social programs) allow the person to become more involved with these communities, however it is the community that ultimately decides if the person is a part of that community. While different communities may be able to draw on skills and resources in the wider community to provide for the needs of their members, people with high support needs may need more specalised skills and resources that may not be available in the community that the person wishes to participate in. As a result they may be placed in communities that are not appropriate for their needs, or, we see new communities being created that can accommodate the person's needs. We see this in aged care, brain injured, people with a rare or contagious diseases etc.

The more people with high support needs that are supported in individualised accommodation, the more resources are needed to support this group. Unfortunately, if there are other social needs or issues that are more important than supporting the individual needs of dependent people, those resources are diverted elsewhere. Other groups such as poor, elderly, drug rehabilitation, cancer. aids victims or asylum seekers may have a higher profile than people with an intellectual disability and those resources will be redirected. Even within the disability community we see different groups competing for the same resources. People with intellectual disability or CP may get preference to resources over other disability groups. Even within a particular disability there are different individuals and groups that compete for the same resources. "on Census night 2001, there were 99,900 homeless people in Australia and 11.7% (11,697) lived in Western Australia" . "Aged care in crisis" . "The Future of Aged Care in Australia".

Just as calculators and computers and mobile phones were introduced into the classrooms and communities, and acclaimed as technological advancements and achievements. Everybody got caught up in the moment and these tools became a normal part of everyday living (institutionalised into the culture of the community). We are finding out now that the new generation has lost the basic skills of maths and english, just as 3rd and 4th generations of unemployed had lost the basic skills in productive employment. I believe that the same thing has happened with this wave of Deinstitutionalisation. In the rush to jump on the band wagon (so to speak) we may have lost the real reason of what we are trying to achieve. The goal of Deinstitutionalisation is to regain personal identity within society (to treat the person as an individual and as a part of society and the community in which the person participates). In some circumstances, providing individualised support can be more damaging to the person than helpful, where the person looses the community networks and relationships (the social connections) within that community that the person has left. I remember an expression "Don't throw the baby out with the bath water". Institutions and institutionalised care are seen as the dirty bath water that some want to throw out. But there is a real danger (and this does happen), that when a person or group of people (the baby) lose that support (the bath water) they create all sorts of problems within the community that they end up in. As a result we see these people often end up in a worse situation that the one that they left. Even now, where people with high support needs are supported in a residential setting, they need a specalised and structured environment that accommodates their special needs that is provided by an organisation or a community service group. Without the institutionalised support that provides for their needs, they would not have the quality of life that they now enjoy.

Over the last few years the trend has been to close the buildings that supported large numbers of people with high support needs for very good reasons. The conditions for the staff and residents have been very bad in these buildings as compared to living standards elsewhere in the community. Because of a lack of resources (staff, technology, funding etc.) the basic needs of the residents were met with no consideration of other needs. The culture of this institutional care was to treat this group as a group rather than individuals. There has been a great deal written about the living conditions of the residents that lived in these buildings, the expectations of the staff that looked after them, and the resources that were used in providing for the needs of the residents as well as the staff that looked after them. Just like anyone else, a person with high support needs, needs the social connections, networks and valued relationships to live a fulfilled and productive life. Just because we change the settings that the support is provided in does not automatically mean that we change the culture and practices within the wider community in which they are placed. Communities are as varied and individual as its members. All communities have formal/informal objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behavior etc. Communities are generally very protective of their beliefs, values, cultures, institutions etc. People that do not fit into what is perceived as the social norm (socially acceptable) by the community are disenfranchised. While people with high support needs may participate in a community, whether they are a part of the community is determined by their social networks and valued relationships within that community. In the rush to provide a better standard of life for people with high support needs I feel that there has really been no thought into the alternative accommodation and support for this group. I am not advocating returning to the past, but I am offering an alternative that is active in the wider community and is a part of the wider community.

I'm sure you have visited a hotel at least once. The hotel supports a small to large number of people, the residents are treated with respect and dignity, the hotel provides a secure environment for the residents, the hotel provides the skills and resources in providing for the needs of the residents, the hotel is open to the wider community and provides various services and activities which support the wider community. In essence, the hotel is a part of the wider community, and in small communities the hotel is the life of the community. The hotel is a warm and welcoming environment where all members of the wider community have the opportunity to participate in and become involved in the activities of the hotel. Now imagine that some of the residents (maybe four or five) of the hotel had high support needs. Their individual needs would be attended to within the hotel, they would have the socialization and community networks within the hotel, they would be treated with value respect. Others in the community of the hotel would also have the opportunity to become more familiar with the needs of the residents which helps to break down the personal and social barriers that there may be.

Although there may be a number of people with different needs being supported within the hotel, the institutions and culture of the hotel are designed to provide positive outcomes for all stake holders within the community of the hotel and in the wider community that the hotel is a part of. Just as "normal" people are able to access a particular service to fulfill a need, a person with a particular disability would have access to each service that is most suitable for the person. A person with a particular need may have access to two or three organisations that specialise in a particular area. A person (for example) may have an intellectual disability as well as spina bifida or cerebral palsy, and needs specalised support for each condition. Having access to each discipline within the community of the hotel allows the person to participate within that community.

Other services such as transport, recreation, employment, education, spiritual etc. would be provided by each company, service provider or institution that specialises in that support, and is available to all members of the community of the hotel. The hotel may also have a hairdresser, post office, deli, various restaurants, coffee shops and a function center that provides social activities for the residents of the hotel and the community that the hotel is a part of. Other communities (recreation, education, employment etc.) that the person is a part of has the support and resources to support the person within that community. By including the wider community in the activities of the residents of the hotel, there is a greater opportunity for the residents to be included in the normal activities of others in the wider community through association and familiarity. This behaviour eventually becomes normalised and embedded into the community (institutionalised) where it becomes a normal part of community life.



The facility provides valued community services, and is more accessable to the wider community.


There are inherent problems in this form of support. There are local and state government policies and practices to work through, issues of accountability and funding etc. Communities are not perfect places either. Politics, different agendas and groups that jostle and compete for the same resources with each other can disrupt the strongest community. Communities can be resistant to change, they can also be dynamic places that can sometimes be a hostile place for someone without a strong voice. There will be lots of barriers along the way and will probably not happen in all communities, but, if there is a genuine desire to include people with high support needs in normal community activities, develop community networks, build relationships, and participate as valued members in their community, solutions can be found to problems along the way. This will not be an easy journey. However, it is a start, where future generations grow up in a different society and have the opportunity to build on the foundations that are put in place today. Just as you or I have the opportunity to move from one setting to another according to our particular needs at a particular time as well as the needs of each community in which we live work and play, people with high support needs should also have the opportunity to move from setting to another according to their particular needs as well as the needs of their community. New technology or changing personal circumstances means that the person has the opportunity to find the best setting and support that is appropriate to the person's needs as well as the community that the person is a part of.

The responsible use of existing resources is important in any community in effectively managing the needs of the community as well as its members. The community needs to identify and assess which resources are important and fundamental to its role (living, recreation, education or employment), and, outside the scope of the community and available within the wider community. Hospitals (for example) provide treatments to various ailments and conditions that prevent people from living a normal healthy lifestyle. The hospital is specialised in providing a particular service in society and draws on other specialty services, disciplines and resources in the wider community, in order to fulfill its social role. The institutions and cultures of the hospital are based on a medical model of care, and depending on the needs of the person, this care can be short term or long term. While the hospital can be considered as a community in its own right, it is also a part of (and supports) the wider community in which it is placed.  A football club has a role in providing a recreation activity for the community that it is a part of. There are particular cultures, values and codes of behaviour that are particular to the sport and the club. The institutions of the club are based on a social/professional model of care. The club provides core services and, skills and resources for its members, and other services not within the scope of the club are sourced within the wider community that the club is a part of. This is the same for any other community (a university, church or even a business).

Institutionalised care for people with disability is alive and well in Western Australia. We see organisations and services that are considered "Icons" in the wider community. These organisations or services represent a particular disability, they provide the knowledge base (the skills and resources etc.) designed to provide the best outcomes for its clients. They may provide accommodation, recreation and employment (whole of life support) for their clients. We see communities of people with an intellectual disability, communities of people with CP, communities of blind and deaf etc. There is nothing inherently wrong with these organisations or services (institutions) providing active support and interventions, in fact, for some, the only community that they have is the community of the organisation or service that they are a part of (whether the outcomes of each model of support are positive or negative depends on the expectations of the stake holders), however there is a strong premise that the organisation or service can get the funding, staff and other resources in providing for its own needs as well as the needs of its clients. We see services and resources being duplicated within each organisation or service that are available within the wider community. The organisation or service is dependent on government policy, community attitudes, and support through donations and other activities within the wider community. The wider community becomes dependent on the organisation or service in fulfilling its role within the wider community, in providing for the needs of people with high support needs.

What happens if there are no available resources, or there are more people that need support than the organisation or service can manage?

I was really interested in your article and wholeheartedly agree with
what you are saying. My only reservation is comparing a "nursing home" to a
'hotel' because I spend my days reminding residents families that this
isn't a hotel!  With such a comparison comes certain expectations which
are often unrealistic due to the financial and resource constraints
imposed on aged care organisations. For example, expectations of menu
selections, extra services, 5* ratings and extra services for those
paying a large bond etc. You will be surprised what some people expect
for their dollar.

I had a vision of "nursing home" having a community centre with a coffee
shop, a GP room, even a chemist perhaps. However, now I am getting to
know the neighbours who are definitely not community minded, I could see
that this wouldn't happen without a fight. The local residents don't
want our cars coming and going, they don't want people parking on verges
and killing the grass and ruining the aesthetics of the street; I
believe they think we are a blight in their otherwise prestigious
neighbourhood which is a sad inditement of our society. One day it will
be them looking for a nursing home for their parents or themselves and
perhaps then their attitudes will change.

It is also really hard to get volunteers too which is another indication
of the lack of community interest. Add to this the expectation that the
"nursing home" becomes responsible for everything once the resident is in the
door. This includes their families rush to relinquish responsibility to
take their resident out of the building on an outing or to a medical
appointment. All of a sudden it is our job to organise transport,
escorts, buses and staff and outings. Yet sadly 107 of our 110 residents
all have families and/or loved ones that would be more than capable of
taking them out for a few hours. We get pestered all the time about when
are we going to arrange an outing for them. The logistics are incredible
yet it would be far easier for each family to take out their resident
once per month or even every couple of months.

These are just a few of the problems we face. Sorry if it sounds like a
gripe but they are sad realities.

Regards
"anonymous"
Manager nursing home




The role of institutions in the community  (Top)

Institutions define the way we interact with each other within society. They are determined by the formal and informal cultures and values of that society, and provide order and stability within a community.
"Institutions are structures and mechanisms of social order and cooperation governing the behaviour of a set of individuals. Institutions are identified with a social purpose and permanence, transcending individual human lives and intentions, and with the making and enforcing of rules governing cooperative human behaviour. The term, institution, is commonly applied to customs and behaviour patterns important to a society, as well as to particular formal organizations of government and public service. As structures and mechanisms of social order among humans, institutions are one of the principal objects of study in the social sciences, including sociology, political science and economics. Institutions are a central concern for law, the formal regime for political rule-making and enforcement. The creation and evolution of institutions is a primary topic for history." (Wikipedia: Institutions)

Pasquale De Muro and Pasquale Tridico argue that institutions are necessary in any human endeavor towards social and economic prosperity. That only by a system of social cooperation, participation and order can any progress towards fulfilling our needs can be achieved.
"... Human development is defined as a process enlarging people's choices, achieved by expanding human capabilities and functionings (UNDP, 1990). Human development is strongly linked with institutions, first of all because in order to expand human capabilities institutions are needed. Moreover, institutions need to be rightly oriented, providing opportunities to poor and to people in general. Values and social norms such as equality, solidarity and co-operation shape formal institutions and choices. In turn, capabilities are enlarged by institutions (Sen, 1985)." (The role of institutions for human development 2008.P5)

Each community has its particular institutions that bond the members of the community. They serve as a foundation for the formal/informal cultures, values, expectations, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behaviour etc. ("social construction"). Whether the community is a family, a school, sporting or social group, a cultural or religious group, a community home, hostel or nursing home they all need a structure that defines the group.

An institution could be describes as:  (Top)
... any club, facility, organisation or activity that:
... has more than one member that actively participates in the club, facility, organisation or activity
... is organised within a set of formal/informal hierarchies, beliefs, values, expectations and behaviours
... may be highly structured within these formal/informal hierarchies, beliefs, values, expectations and behaviours
... shares a set of objectives
(What Are Institutions)

An institution therefore refers to:
... the setting of the activity: the design, location and anything that is removed from or added to, that may influence, aid or protect the members,
... the structure of the activity: the various restrictions that are added to, or removed from the activity, or the way the activity is organised,
... the formal/informal behaviours and attitudes of the members: the various policies, rules, roles, hierarchies of the members.

With regard to people with intellectual disabilities, the aged etc., the terms institution and institutionalisation has been used to describe:
... A small staff/client ratio
... the building: separate from the community, large, crowed dormitories etc., originally a Psychiatric hospital or an Asylum
... the model of care: usually medical model that is highly structured etc.,
... the structure of activities: group activities, must conform etc.,
... the policies, values, expectations and behaviours of the administration and staff towards the residents.
(The Origin and Nature of Our Institutional Models) (Goffman's concept of total institutions)

The problem is not the institution, but the way in which it is used.
Think of any good examples of institutionalised care: living, education, health, recreation etc.
Think of any bad examples of institutionalised care: living, education, health, recreation etc.
(Wikipedia: Deinstitutionalisation)

It can then be seen that the institution (the building) and the institution (the "social construction") are three different things.
The building : large, lots of people, separate areas etc.
The "social construction" : the roles, values, behaviours and expectations of its members
The outcomes : of 1) the building, and, 2) it's "social construction"

At a bank, for example, we open an account and get an account number. We become a part of that system (institutionalised). The account number is our identity, and we are treated as a number rather than a person. The bank is only interested in our financial affairs and other parts of our lives become less important. The bank has a certain amount of control in our financial affairs, and we become dependent on the bank in other areas of our lives.

Banks also have valued roles in society.
They provide the mechanisms that facilitate commercial investment and economic development. While some groups may see banks as evil, predatory and self serving, they have a responsibility to their members (shareholders, employees and customers) as well as the wider business community.

The bank ...
... provides a service to the wider community
... provides for it's own needs
... provides for the needs of it's members
... has to operate within government policy and practice in fulfilling its role in society.

This happens in all parts of society. We have an employment number, a tax number, a drivers license number, a social security number, a passport number etc. that all designed to group people into classifications and categories that allow a business or service to function. The terms "Institutionalisation" and "deinstitutionalisation" are used to describe the situation that people with high support needs live in, and the process of enabling these people to live more normal lives in the community.

Institutionalisation could be described as a loss of identity within the system.
This can happen anywhere, where a person becomes a part of an organisation, group or "the system" that treats the members as a single unit rather than individuals. This can happen to a greater or lesser extent according to the institutions of the organisation, group or "the system".

Deinstitutionalisation could be described as a gaining of identity within the system.
The institutions of the organisation, group or "the system" change to accommodate differences and individual needs of the members of the organisation, group or "the system". By changing the setting, roles, values, behaviours, expectations of the members where they have the opportunity to participate in normal activities that others take for granted.

Characteristics of institutions:  (Top)
While the characteristics of different institutions may be similar, the value that is placed on the institution is mostly determined by the society or community in which it is used. The Institutions of one community may be acceptable in providing a valued outcome, but be unacceptable in another community because the outcomes may be seen to disadvantage the members (devalued outcome).



Characteristics of an institution.

These 6 broad characteristics can be further broken down to describe a particular insitution.
Culture :
"The set of shared attitudes, values, goals, and practices that characterizes an institution, organization or group"
The culture of the institution is the way the institution is organised. This is generally determined by its role in society. For example, while the institutions of a hospital, nursing home or prison are simular, the culture of each is quite different.
Values:
Institutional values (or social values) are different to our personal values in that they allow the members to function within the institution.
Hierarchy :
Institutions are all about a means of coordination and cooperation. The hierarchy defines the agenda and purpose, and the way things get done.
Roles :
Leadership is probally the most important role, and provides the identity and purpose within the institution. Other roles are determined by the hierarchy and the members in fulfilling the agenda and purpose of the institution.
Expectations :
The members are expected to fulfill their assigned role within the institution.
Behaviours :
The way the members treat each other or interact with each other is determined by the culture, values, hierarchy, roles and expectations of the members within the institution.

Institutions and institutional care:  (Top)
Any business, service or organisation that provides a service to a group of people is organised around a set of values, cultures, behaviours and expectations. Whether the service is a day care for toddlers, a video hire, a school or hospital, nursing home or prison, they all have the same characteristics.

Charmaine Spencer (Chapter 4 The Institutional Environment (Characteristics of Institutions)) describes 11 characteristics of institutional care as:
"... Group Living (the setting)
... Standardization of Services
... Treating Residents as a Homogeneous Population
... Formalized Standards of Care Quality
... Accountability
... Hierarchical Structure
... Power Structure
... Professional or Work Relationship
... Medical/Custodial Model
... Dual Nature of Facilities as Personal Residence and Care Facility
... Separateness from Community"


Other characteristics:
... A bureaucratic form of management
... Has a set of formal/informal beliefs, values, roles, cultures, expectations and behaviours
... Formal/informal induction, initiation or rite of passage
... Have ownership of their members
... Walls, barriers etc. that separate the members from the wider community (physical and/or psychological)
... Symbols of authority, keys and locks, badges, uniforms, restricted areas
... Division of the setting/facility into different areas
... Division of the members into different groups
... Members have particular functions or roles
... These roles describe the formal/informal behaviours and expectations of the members
... The routine of the members is organised
... The institution is organised around a particular agenda
... The setting and the activities are designed around the particular role/agenda of the institution
etc.

Think of the internet (WWW).
Think of the various communities that make up the internet
How do the above characteristics fit into these communities?

Institutions can be thought of within two main groups:  (Top)
1) Institutional care (formal) : provides the mechanisms for providing support for a group in society.
... Short term care
... Long term care
2) Social institutions (informal) : provides the mechanisms for social interaction and participation.

Formal institutions:  (Top)
Are defined by the agenda, mission statement, objectives, values and behaviours of the business, service or organisation. These are generally set out by a code of ethics and behaviours that can be used to measure the outcomes of the institution. These can be voluntary, where the servise, organisation or busness sets its own standards, or mandatory, where they are built into government regulations that allows the institution to function.

Short term care:  (Top)
Any service that happens in an acceptable period of time, and does not have much impact on our lives. I may get a plumber to fix the tap or go to the doctor for a checkup. I can get on with my normal lives without to much irritation. If for some reason the plumber has to replace all the pipes in the house, or I have to go the hospital for a few days, my normal routine is disrupted for an appreciable amount of time, and may create some stress for me and the others around me. I may enroll in a course at school or uni and have to change my whole lifestyle to accomodiate the different patterns and routines. I have books to buy, lectures to attend, exams to pass, and various other social functions associated with the school or uni. There are behavoiurs and expectations required of me and this can be a very stressful period. However I know that I am working toward a goal, and am prepared to adjust my normal way of living for the period required. Even changing a job or moving house can involve a stressful period until I adjust to the new situation. What ever happens, I know that I still have some control over my life and still have the choice to opt out of the system if I choose to.

Goffman also makes the distinction between long term and short term stay. When the stay is short time and the outcomes are positively valued, the person may be able to adjust to their normal living patterns quickly. Short term stay can also result in negative valued outcomes that last a persons lifetime.

Long term care:  (Top)
It could be argued that the process of institutionalisation starts within our family, in the day care centre or kindergarten or with friends and peer groups. We learn the values and cultures from significant others in our lives. Whatever happens, there is a sense of control over our life. We can plan and work toward a future, and those institutions are a part of the backround, just as a canvas is the background that a picture is painted on. Its only when these institutions become more promonent in our life, that problems occur.

The longer the time in istitutional care, the more disruption occures in a person's life.
There is a period of adjustment, and maybe rebellion, to the new situation.
There is a learning curve involved in finding out how things work (learning the ropes).
The amount of loss of independence depends on
the reason for the long term care
the amount of skill and resources the person has
the amount of skills and resources the service has
the amount of control the person has over his/her own life

A person may have to give up a significant amount of his/her previous life
belongings
friends
lifestyle
may be realocated to another setting that is more able to provide for his/her needs.


Shows the relationship between the length of care and the amount of institutionalised care provided.

A person may spend a few years in a hospital or in a university. The amount of restrictions in the person's life depends on the institution, as well as the skills and resources of the service. The longer the person spends in institutional care, the more institutionalised the person becomes. For some, this can be a gradual process, and others, this process can be sudden and abrupt. For others, it is the only way of life that they have known. Goffman acknowledges that the concept of a "Total institution" is a concept only, that institutions can never be total, but can be positioned on a continuum from open to closed (Total Institutions: K. Joans & A.J. Fowles - In Understanding health and social care By Margaret Allott, Martin Robb, 1998, Open University P.70). Goffman uses the term "institution" to describe the building and the institution of the building (the social construction). An interesting observation about the concept of a "Total institution" is that there is an assumption is that the staff of the institution are just as institutionalised as the residents, This may be the case where the staff treat others outside the institution the same as the residents of the institution, however, the term "institutionalised" refers to the residents of the institution and not the staff, visitors or any outside contact that staff may have with the outside world, Therefore, any institution, where the residents have no contact with others, (staff, family, friends etc.) or the outside world, can be considered as a total institution in the truest sense of the word. Institutionalisation has been used to describe the negative experiences and outcomes associated with long term care. It is also interesting that a person is not considered institutionalised, where, the experiences and outcomes are positevely valued.

Informal institutions:  (Top)
Informal institutions allow the members or groups to function within the servise, organisation or busness. These institutions may vary according to what the members do within the business, service or organisation. Different members or groups have different functions or roles that allow these groups to coordinate their activities within the organisation. These institutions are informal because they are more about the way these members and groups interact with each other, rather any formal policies, rules or regulations of the servise, organisation or busness. There can be any number of layers in the business, service or organisation, The bigger the business, service or organisation, the more layers there may be.

These institutions...
... provides the role of the group within business, service or organisation - what is its role?
... define the way the members or groups functions within business, service or organisation - how does it do it?
... set the scope and boundaries of the members or groups within business, service or organisation - when does it do it?
... define the roles of the members of the members or groups within business, service or organisation - who does what?


The relationship between the formal and informal institutions
 within the business,
service. organisation or community

While the community (business, service or organisation) or has a role in society, each group has another role within the community, and each member has a different role within the group, within the community. The institutions of each layer also determines the way the community functions within society. Disability services (for example) have different areas that support people. Homes have different cultures. One home may be supported along a medical model and another may be supported along a social model. While each home supports the formal institutions of the organisation, the informal institutions of each home are different.

While the home may promote the cultures, values and institutions of the organisation, the cultures, values and institutions of the home are dependent on ...
the staff
the residents
The skills and resources of the staff and the residents

Two homes that are supported by an organisation may share the cultures, values and institutions of the organisation, however the cultures, values and institutions of the organisation of each home become more important. Each home has its own identity. The needs of the residents are different, the staff are different and are organised along different routines that suit the needs within the home. Even within each home the informal institutions change according to the staff that are on duty. One shift may be highly organised and structured along a medical model. Another shift bay be relaxed and casual along a social model. The shift may have strong leadership and is run along along organisational policies and proceedures

Institutional care, then, is an ordered and specalised intervention that requires an appropriate setting, skills and resources that are not available within the wider community. The way the care is provided and the outomes of this care are directly related to the service that provides the support. A prision, for example, has the same institutions as a hospital, however it is immediately obvious that the outcomes of the prision and the hospital are different. Even within different prisions and hospitals we see different outcomes.

From the above, it can be seen that the institutions of the buildings and communities that disadvantaged people were placed in, are the same as the institutions of the different buildings and communities that we all participate in, but have different outcomes. At he bank, we have to suffer all sorts of indignities to get a loan or see a teller. There is no compensation when something happens to our money because it is not their fault. Even when it is there fault, there is no one that takes responsibility.

Within the banking institution ...
... There is a sense of loss of self within the systen.
... A small staff/client ratio
... Are treated as objects (numbers, interns, defectives ect)
... Settings and activities are structured around staff --> clients
... Strict separation of staff and clients
While there are these negative outcomes, the value of the institution is positively valued bysociety. The institution may also be negatively valued by different communities within society.

Negative outcomes (devalued):  (Top)
Collins 1993 (from Mental health care for elderly people By Ian J. Norman, Sally J. Redfern, P 501) describes institutional characteristics that are negatively valued as:
"... denial of humanity and individuality
... no personal space
... no privacy
... little choice
... little comfort
... little personal safety
... few possessions
... no dignity
... pauperized
... dependent
... no control, participation or decision making
... cannot function as ordinary human beings"


Other negative outcomes:
... A small staff/client ratio
... Low value (Sick Person, Subhuman, Organism, Menace, Object of Pity, Burden of Charity, Holy Innocent, Deviant etc. The Origin and Nature of Our Institutional Models)
... Low expectations
... Are treated as objects (numbers, interns, defectives ect)
... Settings and activities are structured around staff --> residents
... Strict separation of staff and residents
... Separation of residents into groups
... All residents are all treated and dressed the same
... All residents follow the same daily patterns of communal living
... There is no variety in the routine
... Activities are confined to the facility and separated from the community
etc.

The above outcomes can be changed from negative to positive,
within the institution that provides the care.


Positive outcomes (valued):  (Top)
Ramon, 1991 (from Mental health care for elderly people By Ian J. Norman, Sally J. Redfern, P 503) describes institutional characteristics that are positively valued as:
"... people first
... respect for the person's
... right to self-determination
... right to be independent
... empowerment"

Other positive outcomes:
... A large staff/client ratio
... High value
... High expectations
... Settings and activities are structured around residents --> staff
... Residents are treated as individuals
... Less structured daily patterns of communal living
... Variety of activities and different patterns in the routine to suite the residents
... Mixed activities where residents are included in the normal activities of the community (living, recreational, education and employment)
etc.

Goffman describes four main characteristics of institutional care as:
Batch living
Binary management
The inmate role
The institutional perspective

Rather than describing a characteristic of institutional (the building and the "social construction") life, Goffman is actually describing a set of outcomes that are characterised by the "social construction"of the institution. These outcomes are described as negatively valued outcomes. When used in the context of the corrective services or similar institutions, or in another culture, these outcomes may be seen as positive outcomes.

Batch living, for example, describes the conditions of living, the activities and the attitudes of the management and staff towards the residents.
"Batch living – where people are treated as a homogeneous group without the opportunity for personal choice. Activity is undertaken en masse. Rules and regulations dominate and residents are watched over by staff." (Lennox Castle Hospital: a twentieth century institution)

Batch living is used to describe negatively valued outcomes:
The members are separated into groups - authoritarian - subservient
The members of the subservient groups are all treated the same - as a group (group living, group activities etc.), rather than as individuals (no personal choice, no variety etc.) by the authoritarian group. "It is characterised by a bureaucratic form of management .... 24 hours a day without variety or respite." (Goffman, 1961 : 5-6, in, K. Joans & A.J. Fowles : P.71)

Within the wider community, we see these same outcomes, and although they may be less extreme, they are still there in all forms. Sometimes these outcomes, described as batch living, are a necessary part of the activity and the setting and are positively valued in providing positive outcomes for its members. A package tour, for example, the members are all living together and participating in the same activities. They are restricted in what they can and can't do, they have a set timetable that has to be followed, the service provider is responsible for their welfare etc. The value that is placed on the packaged tour is determined by the experiences of the members of the tour. I'm sure you have read or heard about a tour where the members were poorly treated, were placed in lousy accommodation, left on a ship or in a hotel for the whole time (these things have happened) etc. Boarding schools, the army, a prison are other examples of batch living.

We also see these outcomes (in varying degrees) in living, recreation, employment and education services that support disadvantaged people in the community. Does this mean that we need to remove all organisations, community groups or services that support disadvantaged people?

NO! There will always be a need for institutions and institutionalised care in the community.


Goffman states that no institution is all open or all closed. That they all share similar characteristics.
An institution is either positively or negatively valued, according to the values
of  the community or society that the institution is a part of.

It is the total value of the outcomes of the institution that determine whether the institution is
positively or negatively valued, rather than the characteristics of the institution.
The value of these outcomes are determined by the values of the community and it's members.

At school, for example, the students may negatively value school; they have to study, do homework, are not allowed to do what they want, are expected to be at a certain place at a certain time, are put on report if they don't do what they are told, can not go out at night during the week, have to wear a uniform, respect the teachers, have to participate in activities that they don't like (they may also be bullied and victimised) etc. etc. etc., while the parents and the wider community positively values the school in that the students develop knowledge, learn life skills, social skills etc. towards being productive members of the community.

In a religious convent, for example, the institutions may be positively valued and provide positive outcomes in one community, while the same institutions may be negatively valued and have negative outcomes in another community. Prisons may have a positive outcome for some, and have a negative outcome for others. Nursing homes can also have a positive outcome where the institutions of the nursing home provide positive outcomes for the residents (SRV).

From the above it can be seen that the values (high order, middle order or low order) of the community and the person determine whether the values of the institution are positive or negative. Do we, as a community, value liberty or security as a high order value? Do we value order and structure, or freedom and individuality, as a high order value? Do we value the sanctity of human life as a high order or a low order value? Do we value a physical life, or a spiritual life as a high order value? Do we value individual wealth, or shared wealth, as a high order value? Do we believe that all people should be treated equally, but some more than others?

Institutions and institutionalisation can then be seen to have two definitions within society.
1) the community definition is concerned with normal community activities such as education, religion, the legal system, or any body of knowledge or behaviour that is a part of the community and is organised within a set of formal and informal settings, beliefs, values, roles, expectations and behaviours. These are usually positevely valued outcomes.
2) within the human services (social definition), the terms institutions and institutionalisation have been used to describe the social conditions that people with an intellectual disability lived in, in society. These are usually negatively valued outcomes.


While the term Institutionalisation can be seen to have
two definitions, they are describing the same things.
Community definition: the model of care is positively valued.
Social definition: the model of care is negatively valued.

"The term institutionalisation is widely used in social theory to denote the process of making something (for example a concept, a social role, particular values and norms, or modes of behaviour) become embedded within an organization, social system, or society as an established custom or norm within that system. See the entries on structure and agency and social construction  for theoretical perspectives on the process of institutionalisation and the associated construction of institutions.

The term 'institutionalisation' may also be used to refer to the committing by a society of an individual to a particular institution such as a mental institution. The term institutionalisation is therefore sometimes used as a term to describe both the treatment of, and damage caused to, vulnerable human beings by the oppressive or corrupt application of inflexible systems of social, medical, or legal controls by publicly owned, private or not-for-profit organisations or to describe the process of becoming accustomed to life in an institution so that it is difficult to resume normal life after leaving." (Wikipedia: Institutionalisation)

Types of institutions:
... Community
... Cultural
... Religious
... Health
... Sporting
... Educational
... Recreational
... Professional

The local museum (The Museum's Community Role) is an example of an institution in the community, and how the institution relates to the community.
While museum's are not disability service providers, they share some characteristics:
... Provide a service to the community
... Rely on government and community support
etc.:

The above shows that the term "institutionalisation" both describes the 1) process, and 2) the outcomes of the process that are negatevily valued by a person. When referring to an institution, there needs to be a new perspective in the way we approch service delivery. Institutions are neither open or closed, they just are. The way we use these institutions within the service determines the outcomes of the service.

The institution, the asylum and the nursing home:  (Top)
Asylum may refer to: (http://en.wikipedia.org/wiki/Asylum)
An asylum can also be defined as a place of refuge, support or protection. Originally these places provided a safe place where disadvantaged people were looked after. They often had a better life that they would have had in the wider community. Over a period ot time these places became larger and larger, and of course the particular institutions of the asylum changed to accommodate more and more people.

There are lots of historical examples where disadvantaged people had been well looked after, and while these people were institutionalised by the system, they were generally better off in the asylum rather than in the wider community. With the development of new technology, etc. as well as changing attitudes, these people have the opportunity to become included in normal community activities (the good things and the bad things) that we all take for granted today.

Just as there are lots of examples of good nursing homes for the aged, does it mean that we have to pull down all nursing homes because of the bad examples? Are the institutions of the nursing homes any different to the institutions of the asylums? While some conditions are not the best for the aged (although there is some progress in improving these conditions) and facilities are old and out of date, there has been no real overall concerted effort to change, as we have seen with regard to the conditions of people with an intellectual disability.

Institutionalisation, deinstitutionalisation, what's the difference :  (Top)
Deinstitutionalisation has been described as ... "the process of re-establishing people with intellectual disability in a community through community based services".
Another way to describe the process is ... "the relocation of people that are supported by an organisation or service into another setting, where they have a greater opportunity to experience the same activities as others within that setting".

In the above descriptions, the person still uses the support systems that are provided by an organisation or service, or within the disability arena. Issues of funding, responsibility, accountability, staffing and personal care, transport and medical are the responsibility of the organisation or service. The values, behaviours and expectations (institutions) of the organisation or service provide the institutions of the support used in supporting the person. The goal is to facilitate the development of valued relationships and networks within a community, where a person is valued as a part of that community.

When moving to another setting, the particular institutions of the setting may become more important than the institutions of the organisation or service that provides the service.
Any setting where people live, work or play has its own particular institutions. They can't be avoided.
Think of any activity you are involved with.
Think of the various institutions that may be involved with the activity.
What are the various outcomes that may be associated with the activity? 

To deinstitutionalise can then be then thought of as a process of consciously or unconsciously adapting or modifying a person or people, their values, behaviours, the social structure, and the environment in which they participate. What is actually happening is a process of reinstitutionalisation, where, the outcomes change from negatively valued to positively valued. While institutionalisation is often referred to the situation of people with disability (especially people with a mental condition), it is certainly not limited to this group.

Any person or group of people become institutionalised to a greater or lesser degree by the community,
organisation, culture or ethnic group of which they are a part of.

When moving from one community to another, we take on the values, behaviours, responsibilities and expectations (institutions) according to our particular role within the new community. A father in one community may be a teacher, or a student in another.

The armed forces are a good example, where the members are conditioned to behave according to a strict regime. A bikie gang epitomises the antisocial culture, where the establishment is seen as the enemy. Drugs, violence and antisocial behaviour characterise the members. However, they have a code of values, ethics, conduct, as well as a strict hierarchy. Prisons, for example, are designed to provide positive outcomes for their members, but how often do we see these people learn the cultures and values of the others around them? This process of institutionalisation also happens within ethnic communities, hospitals, nursing homes, universities and other places of learning, religious communities, sporting communities, organisations etc. This does not mean that we should do away with these groups or services, or that they are bad, evil places (although some may be - a value judgment?), on the contrary, these groups and services have valued roles and are valued within the wider community (debatable).

The Australian Institute of Sport is an example of an accepted institution that people aspire to becoming a part of, yet the institute shares most of the characteristics that are ascribed to people that were placed in asylums etc.

The athletes:
... are separated from others in the wider community
... are poked, prodded and their every move is monitored and recorded
... are restricted in what they can eat and drink
... have to get up and go to bed at certain times
... training routine is rigorous
... are told what they can and cant do
... are confined to the facility
... whole life within the institute is structured around training to be the best

We also see this happening within the football community where the players lives are institutionalised by the formal/informal cultures, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behaviour etc. of the Association.

The players:
... symbols of authority
... are professionals that are bound by the code of the club
... follow a strict regime of the club
... may have a high profile within the football community
... their every move is recorded, dissected, analysed and discussed
... they aspire to play in the national AFL comp, win player of the year etc.
etc.

The characteristics of a university (learning institution):
... authoritarian hierarchy
... symbols of authority
... restricted areas
... strict code of behaviour
... division of members into groups
... set roles, behaviours and expectations
... group activities
etc.

The same thing happens within extreme religious communities, and to a lesser extent in other communities that are organised around a particular agenda. Just because devalued people may spend their whole lives in institutionalised care does not mean that they are any more or less institutionalised than the athletes/players/students in the examples above. It does mean that the institutions of the athletes/players/students have positively valued outcomes, and the institutions of devalued people living in the asylum have negatively valued outcomes.

Quite often we see ex-members of a community are still institutionalised in the institutions of the community that they were a part of. Members of the armed forces, for example, can not adjust to living in a "civilian community". This also happens when people move from one ethnic community to another ethnic community. They may be so institutionalised in the old culture that they can not adjust to the institutions of the new culture. Students that are institutionalised within the education system may also find it hard to adjust to the "real world" and find security within the education community (perpetual students etc.). Anyone that moves from one community to another has to find all the local facilities, build new networks and relationships within the new community, understand the local language, the customs, values, behaviours, attitudes and expectations, the culture (institutions) of the community.

We also see a merging of cultures and institutions within a community where different groups live together and share resources. Where these new cultures and institutions are not seen as threatening or divisive they are often used to the advantage of both groups. When these new cultures and institutions are seen as threatening or divisive, there may be some conflict, violence or discrimination between the groups. The members of one group may be devalued as a group, separated, marginalised or disenfranchised. There is usually some characteristic of the group that is used to justify there treatment (assigned devaluing labels etc.) that allows the community to treat the members of the devalued community as different. They may be attacked, discriminated against, or just ignored. Fundamental differences between cultures and communities has resulted in riots, civil conflicts and deaths, where members cannot resolve their differences. These differences may become so institutionalised into the culture of the society in which these communities live, that generations pass down these attitudes to new generations so they become a normal part of life. This can happen to any person or group, where they are seen as different, or are a threat to the community as a whole.

Think of a setting/activity, and the members of the community within the setting/activity. Think of the institutions of the setting/activity as the paint that covers the setting/activity. We can choose to paint the setting/activity black (outcomes are negatively valued) or white (outcomes are positively valued), or even grey, where the outcomes are a mix of negative and positive values that are specific to the needs of the setting/activity.

"Social Role Valorisation  is intended to address the social and psychological wounds that are inflicted on vulnerable people because they are devalued, that so often come to define their lives and that in some instances wreak life-long havoc on those who are close to them.
SRV does not in itself propose a 'goal'. However a person who has a goal of improving the lives of devalued people may choose to use insights gained from SRV to cause change. They may do so by attempting to create or support socially valued roles for people in their society, because if a person holds valued social roles, a person is highly likely to receive from society those good things in life that are available or at least the opportunities for obtaining them. In other words, all sorts of good things that other people are able to convey are almost automatically apt to be accorded to a person who holds societally valued roles, at least within the resources and norms of his/her society".
(Wikipedia: Social role valorisation)

"The major goal of SRV is to create or support socially valued roles for people in their society, because if a person holds valued social roles, that person is highly likely to receive from society those good things in life that are available to that society, and that can be conveyed by it, or at least the opportunities for obtaining these. In other words, all sorts of good things that other people are able to convey are almost automatically apt to be accorded to a person who holds societally valued roles, at least within the resources and norms of his/her society." (P.1) ... "For example, while SRV brings out the high importance of valued social roles, whether one decides to actually provide positive roles to people, or even believes that a specific person or group deserves valued social roles, depends on one's personal value system, which (as noted above) has to come from somewhere other than SRV." (P.4) (Joe Osburn: An Overview of Social Role Valorization Theory)

It could then be argued that by applying the principles of SRV to the particular setting that is supporting people with disability, there is a conscious process of changing our values, behaviours, the social structure, and the environment in which we participate, and that all participants are being institutionalised, in behaving within a defined set of goals, values, roles and behaviours that promote valued roles for disadvantaged people.

Institutionalisation is all about "building in" these new participatory decision-making processes so that they become, for all stake holders, the normal "way of doing things". (Tools to Support Participatory Urban Decision Making Process)

From the above, it can be seen that deinstitutionalisation is the process of changing the outcomes of a setting from a negative value (black) to a positive value (white).


Negatively valued outcomes  :  low expectations, conform, structured around the needs of the staff etc.
Positively valued outcomes  :   high expectations, individual, structured around the needs of the residents etc.

It could then be argued that disability service providers today provide the same, or a similar model of care as the institutions of old, and the only difference is that the outcomes of the service provider today are positively valued (or at least by the supporters of the current model of care).

From the above it can be seen that institutions themselves are never good or bad. While they all contain the same or similar characteristics, it is the values of the outcomes that determine whether the institution is good or bad.

For the athletes who live in institutional care the goal is to represent Australia.
The players of the football club have a goal of playing in the finals.
Members of religious institutions have a goal of becoming closer to God.
Education institutions have a goal of providing skills and knowledge to its members.
Corrective services have a goal of rehabilitating its members.
The goals of nursing homes and other facilities that support people with high support needs is to provide the best care that is appropriate to the person.

The outcomes of these institutions are seen as positively valued.

The goal of nursing homes, Asylums (a safe place) Psychiatric hospitals etc. were originally intended to provide a better quality of life for the residents, however over time these communities became larger and larger. The outcome was that the residents of these communities lost a lot of their rights and normal living conditions. The wider community also contributed to the conditions that these people lived in by promoting them as deviant etc. (Bethlem Royal Hospital etc.). The outcomes of these institutions are now seen as negatively valued. By changing the outcomes of these institutions within these buildings from a negative value to a positive value, we change the conditions within the buildings, where the residents have a better quality of life.

Alternatively we can place people with high support needs (severe disability, aged etc.) in other community based services that are designed to provide a better quality of life (deinstitutionalise). People with high support needs may find it difficult to develop these new networks and relationships and become isolated. The aged may lose the support networks that they had (their families have moved, their friends have passed away etc.). Depending on the person's needs, the person may be dependent on one or more services (transport, home help, personal help, financial help, medical needs, skills development, special equipment etc.) that are not available in the wider community. The person then has to rely on an organisation or service provided that has the resources to support the person, The organisation or service provider has its own formal/informal cultures, values, expectations, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behaviour etc. (institutions) that the person has to fit into. Whether the person is advantaged or disadvantaged by these institutions depends on whether these institutions have positively or negatively valued outcomes.

Think of any activity you are involved in:
what are the objectives of the activity?
what is the structure of the activity?
what are your relationships within the activity?
what are the formal and informal beliefs, values, roles, expectations and behaviours within the activity?
are the institutions of the setting and the activity positively, negatively valued or a mixture?

Historical perspectives of institutionalisation and deinstitutionalisation:  (Top)
The role of the state in society.
The role of the church in society.
The evolutions of the state and church in society
The role of technology in society

The educational institutions ...
History of Educational Institutions
Characteristics of a Community of Learning, Ernest L. Boyer

Educational institutions were terreble places.
Where only for some groups

The medical institutions ...
Medical institutions were terreble places.
No drugs or medical equipment

The employment institutions ...
Slavery, poor conditions.
Work houses

The disability institutions ...
Conceptions of idiocy in colonial Massachusetts, Journal of Social History, Summer, 2002 by Parnel Wickham
1856.org: Social History of the State Hospital System in Massachusetts
Poorhouse to Warehouse: Institutional Long-Term Care in the United States
THE FORGOTTEN HISTORY: THE DEINSTITUTIONALIZATION MOVEMENT IN THE MENTAL HEALTH CARE SYSTEM IN THE UNITED SATES
History of disability services in Westen Australia
History of disability services in South Australia
Timeline results for history of disability policy in western australia


Social perspectives of institutionalisation and deinstitutionalisation:  (Top)
Ageing population
Limited resources in prviding for disadventaged people (aged, sick, disability etc).
Increasing strain on existing skills and resources in society.

Institutional care (the building and the institution) has been around for a long time. There are religious institutions, educational institutions, medical institutions, business/employment institutions, benevolent institutions and even sport and recreation institutions. Historically, these were all horrible places when compared to what we are accostumed to today. Institutional care was about social order, rather than social care. The social construction (or model of care) of the institution reflected social construction of the society in which the institution was a part of. Each model of care (religious, educational, medical etc) has had its own story of debate, struggle and even voilence within that society. We see the same thing happening today in China, where a new generation of workers are rebelling against the social institutions that provided the vechicle of change within that society. Today, China is is giong through an identity crisis. Two cultures, the political/traditional culture and the financial/indrustral culture are moving China in all sorts of directions. It could be argued that China is going through a cultural revolution, as well as an industrial revolution similar to England and Europe a few hundred years ago. China went through a political revolution a 20 or so years ago, and it has been only in the last few years that China has really opened itself to other cultures and practices.

The literature on the origins of what we refer to as the process of institutionalisation and deinstitutionalisation seem to be both limited and biased. Throughout history there are references to the conditions that disadvantaged people (the sick, the poor, people with intellectual disabilities, criminals etc.) lived in, however, it was only recently that the development of drugs and other technologies allowed certain groups of people to live a more normal life. This shift in the culture of institutional care has happened at different rates within different institutions, within different societies.

Disadvantaged people were actually well looked after and had a better quality of life than they might otherwise have had, in the wider community.
A brief look at the history of medicine would show that all sorts of people suffered all sorts of indignities in the name of science. The Roman Catholic church and other religions did horrible things to people in the name of God. Does this mean that we should do away with medicine and religion (although there are plenty of people who would like to get rid of both)? During World War 2 people with disability were not the only group that were targeted by Hitler. Jews and other groups faced the same, or a worse fate than disadvantaged people.

As the population of disadvantaged people grew, the society in which they lived did not have the skills and resources to provide for their needs. The facilities became bigger and bigger to cope. They became the social norm. Any negative outcomes from the model of care were tolerated because there were no other solutions (just as nursing homes, mental hospitals, rehabilitation hospitals, prisons etc. are tolerated today).

Political agendas put the conditions of people with disability in the spotlight.

Technological perspectives of institutionalisation and deinstitutionalisation:  (Top)
They were experimented on as guinea pigs. They were inspected, dissected, bisected, tested, analysed.
The emergence of the psychology profession used these groups as a way to gain more credence as a professional body in society.
Medical/psychology profession developed drugs and techniques to allow disadvantaged people to live more normal lives.

Professional perspectives of institutionalisation and deinstitutionalisation:  (Top)
Each discipline of human knowledge operates within its own arena (or reality) of knowledge. Each has its own perspective on life as we know it. Just as an artist or conservationist has a different perspective of a tree to an economist or a business person. They all see different values within the tree. While there may be differences of opinions and conflicts about the value of the tree, they are all valid.

Disability has been based in folklore, myths, legends and religious doctrine because of a lack of knowledge, skills and resources to provide for their needs. These days we have a better understanding of humanity, and while each discipline has a different perspective, thay are all valid.

... the medical profession looks at the human body and all things associaled with the body: the mind, the skeliton etc
... the psychology profession looks at the mind and all things associated with the mind: the body, society etc
... the social work profession looks at the person's relationship with society and all related things
... the disability profession looks at society's relationship with the person and all related things
... the aged profession looks at the aged and all related things
... the human development profession looks at human development and all related things
... the community development profession looks at a community and all related things
... the business profession links at bussinesses and all related things

The institutionalisation of deinstitutionalisation:  (Top)
"Institutionalised care for people with disability is alive and well in Western Australia"

We see institutions such as Activ, Identity, TCCP, Rocky bay etc take over the role of the institutions that they replaced in society.
While the outcomes are different to the services that were provided 100 yeqrs ago, they still provide the support, the skills and resources that are not available in the wider community.

The various policies, practices and institutions of government, disability services and organisations provide the community behaviours towards these groups, and expectations of the way these groups are treated within the community.

The shift from community care to social care
The dependence on social structures in providing the care

Institutional practices ...
Profiling as a social policy
Actively supporting people with high needs in the community: the community provides a supportive role
Service industries become dependent on these institutions
New communities are built that have the skills and resources to provide for the needs of people with high support needs.
Legatimises the roles of institutionalised care in the community.

Chapter 5, Reinstitutionalising Disability,
In Gerard Goggin, Christopher Newell, Disability in Australia: exposing a social apartheid,
University of New South Wales Press LTD Sydney, First published 2005

The institutionalisation of community care:  (Top)
The roles of the carer
Provides personal care for a person that can not look after him/her self
Privides for the physical and social needs of the person
Has limited skills and resources in providing for the person
Is often helped by family, friends,
or a community support network/group,
or institutional support that is provided by a government or community service,
that has the skills and resources to help.
Is the best person to provide the support;
Knows the person.
Is often trained by a medical service that has some knowledge about the condition that the person sufferes from.
May support the person in a setting that most suits the persons needs
The care is provided in a non-institutional way, in a non-institutional setting.
The carer may have other roles such as mother, father, son or daughter, brother or sister, or worker, student etc.
The carer may also recieve financial support: child support, carers support or pension.
The amount of financial or social support provided by government or community service is dependent on some criteria that allows access to that financial or social support.

The roles of the volunteer
Provides a service that is not available in the wider community.
Usually not paid for services, but compensated for expenses.
Provides a non-professional approach to service delivery within a service or organisation.
Is bound by the policies, proceedures and other mechanisms of the service or organisation.
Is bound by the institutions of the service or organisation.
Acts as an aid or support to the service or organisation in providing non essential services that supplement or assist service delivery.

The roles of the support worker
Provides a service that is not available in the wider community.
Paid for services provided.
Provides a professional approach to service delivery within a service or organisation.
Is bound by the policies, proceedures and other mechanisms of the service or organisation.
Is bound by the institutions of the service or organisation.
Provides the essential services of the service or organisation

The above shows that while individuals are looking for a local service to provide the skills and resources, so they can better fulfil their own needs, these supports are less likely to be found in the community. There is a growth in the human service industry that is taking over from the traditional roles of the community in providing these supports. Local Rotary, Lions, Apex groups are getting smaller. Church and school groups have less participation as we knew it in the community.

In many ways I see this as the community opting out in providing these roles ...
A lack of community skills and resources.
Communities are more diverse and fragmented these days. They are different places to what they were 100 years ago;
New generations have more things to think about these days. They expect everything to be given to them.
Everything is reduced to a personal cost. My time is more valuable in doing something else.
Permissions, insurance and liability issues, legal implications, and council regulations all make it more difficult for community groups to get together.

The idea of "placing a person in institutional care" is so institutionalised and normalised into the culture of the society through government policy and practice, the medical arena, schools and universities, as well as the media, that there really is no choice these days. A person that can not be supported in the community is placed in institutional care that has the skills and resources that can provide for his/her needs.



The role of the service provider in the community  (Top)

The service provider:  (Top)
Any service that is provided by an agency, service group or organisation that specialises in looking after the needs of people who can not be supported in a community. The service provider may specialise in a particular area of care (accommodation, recreation, education or employment), or provide services that include all aspects of a person's life.

Characteristics of the service provider:  (Top)
... Has formal/informal shared goals, beliefs, values, cultures, institutions etc.
... Is organised within a set of formal/informal beliefs, values, roles, expectations and behaviours
... Hierarchical Structure
... Has ownership of their members
... Members have one or more roles
... There is some form of communication between members
... Has resources that are shared between the members
... Balances the needs of the service provider with the needs of its members
... Shares and draws on skills/resources where needed
... Often has communities, clubs, teams, groups etc. within the community

You may say that these are the same characteristics as a community, and I agree. Service providers are communities that are organised around more formalised structures that are accountable to a governing body (See also Characteristics of a community, Understanding communities).

Other characteristics:
... Is accountable to a governing body, committee or government agency
... Operates within a professional capacity in providing a service that is not available in the wider community
... The service is structured around a particular model of care
... The activities of the service in supporting its clients is usually coordinated by the service
... The activities of the members are usually highly organised and structured around the service (set routines, set activities etc.)
... The larger the service the more resources the service needs in supporting its own needs
... The wider community generally supports the activities of the service
... Members are:
1) Staff employed and trained to fulfill the needs of the service provider
2) Clients that receive the service
3) Volunteers that support the staff in service delivery
etc.

Models of service:  (Top)
Service delivery has five main finctions:
… To provide a service to the users,
… To provide the rescources (staff, volunteers, facilities, equipment, skills, knowledge etc.) necessary for the service,
… To maintain the service to a standard that can be used by all members.
… To balance the needs of the service users with the needs of the service, and the needs of the community,
… To share and draw on skills / resources where needed.

While a service provider operates within it's own model of care, each community of the service is based on a model that loosley describes it's function or role within society.
Three broad (and simplistic) models could be described as, but not limited to:

… Social (holistic): is concerned with who we are, and how we socialise with each other. Human interaction with each other and the environment play an important part. Settings are all about how the members interact with each other and how the environment affects the members as a group. Members also have the opportunity to change their own environment to their own needs without affecting the community as a whole. The purpose (objectives, goals, policies etc.) of the community are less formal with less defined roles.

… Professional (holistic/specialised): is concerned with providing an environment that accommodates the particular profession or the activity of the profession (educational / medical / business). The members have to fit in to structured environments that are less accommodating to the needs of individual members and how they interact with each other. Settings are about groups of people, and how the person fits into the environment rather than how the environment fits into the person. The purpose (objectives, goals, policies etc.) of the community is formal with clearly defined roles for its members. Community services are often built around the professional model, where staff or volunteers are employed by the service to support the service users within the goals, values etc. of the service provider. Records are kept on budgets, expenses, care plans, progress notes, medical histories etc.

… Scientific (specialised): is concerned with research, facts and figures. The setting is highly structured around a set of standards, procedures and principles that do not allow for individuals. Focus is on objective systematic enquiry of objects, patterns of behaviour and interactions, time and resources, balance sheets and budgets, efficiencies of scale, opportunity cost etc. Research communities need to have a consistent approach to inquiry so results can be analysed and compared. Sporting communities are about finding the best performance of the players to achieve a desired outcome - to win the game.


The three models and how they relate to the community of the service provider.

Service communities are generally a mixture of the three types (Social, Professional and Scientific). Social groups need to have the freedom to socialise, but also need some order and structure to coordinate activities and work within budgets etc. Work places etc. need formal structures and environments to achieve the desired goals, but there also needs to be some flexibility to allow for individual needs. Scientific communities study, measure and analyse the behaviour, performance and the environment of the individual and the group, but they also need to have some flexibility to allow for individual needs.

The least restrictive environment often refers to adapting the environment to suit all members, so that they have an opportunity to participate in activities, share experiences and be a part of their community. How the environment is adapted will depend on it's particular construct (social, professional or scientific), the amount of adaptation that is needed to suite all members and how the members are advantaged or disadvantaged through the adaption.An example of this is in a classroom environment, where a person has a intellectual or physical disability. The adaption is the inclusion of an aide to assist the person has a intellectual or physical disability. How the adaption advantages or disadvantages the others depends on the overall type and the quality of the activities, the opportunity to participate in the activities, share experiences and be a part of their community.

The role of the service provider:  (Top)
Within the current social structure, service providers (organisations and service agencies) take on an active role (provide direct intervention) in providing for the needs of people with high support needs. These service providers often become communities in their own right by providing a service to a specific group, providing whole of life approach to service delivery (take ownership of their members). The wider community's role is to support the service provider, any community engagement and participation has generally been from the perspective of the person with the disability <> service provider, rather than the person with the disability <> community.
... the community supports the activities of the service provider through funding, donations, sponsorships, promotions etc.
... the community supports the activities of the members through volunteers etc.
... the community becomes dependent on the service provider in providing the service,
... the activities of the service provider become the social norm (institutionalised) in the community,

The service provider may have a number of broad roles:
… to provide for its own needs in supporting a person or group of people in society.
to suppor and maintain the needs of the clients in society.
… to actively promote the needs of disadvantaged people through the principles of normalisation, social integration, empowerment and social role valorisation in society.
… to actively support, through direct intervention (accommodation, recreation, education or employment), disadvantaged people in society.
… to provide support within each community that the person is a part of.
… to support other communities (family, living, employment, recreation etc) in providing for the needs of their members.

While the primary role of the service provider is to support disadvantaged people, there may be other secondary roles that are associated with that role.
... Provides a knowledge base of theory and practice that can be used within the service as well as other services that support people with the same characteristics.
... To provide a knowledge base and research into a specific area if interest.
... Provides employment within the industry. The service provider employes staff, equipment, facilities, and other services within the wider community.
... To act as an agent or broker in finding the most appropriate community that fulfils the needs of the person.
... To develop skills and resources (theory, technology, equipment etc.).
... To provide a safe and secure environment that supports all members.
... To communicate with other communities that the community is a part of.
... To provide other services that are not available in the community such as transport, health services and other specialise services designed for the needs of the target group.
... To comply with various Government, Local Government and Council funding agreements, policies, regulations, Bylaws etc.

Other less obvious or hidden roles may be:
... To provide direct intervention in a person's life, where the person in not capable of making their own decisions.
... To protect it's members from society.
... To protect society from it's members.
... To provide a cost effective way to support a group with high support needs.

Service providers are generally designed (and funded) to target a particular group (community role):
... a particular disability
... a particular age group
... a particular income group
... a particular activity
... a whole of life approach
This process can be described as 'Profiling', where, there is a set of criteria that service users must fulfill in order to receive the service. Profiling disadvantages people that have a rare condition or disability, do not fit the funding criteria of the organisation or there is no service in their area.

The value that is placed on the service provider by its members, as well as the community that is is a part of, is determined by its success in fulfilling its role.
The amount of success is determined by:
... the policy, mission statement, institutions (values, cultures, expectations etc.) of the service provider
... government policy and practice (the institutions of government, and how these institutions determine the decision making process towards interventions in community practice).
... funding : through government funding, private and community donations.
... available resources : staff, facilities, equipment.
... ability to provide for the needs of its members.
... ability to balance the needs of the service provider with the needs of its members.

In theory, applying the principles of SRV to people with high support needs may provide a more positive social role and lead to valued relationships within a community. However, the reality is that the skills and resources needed to support the person may not be available within each community that the person wishes to be a part of, and there is a risk that the person does not connect with any community in any permanent or "participatory" sense.


Shows the relationship between the needs and the support required in providing for those needs.

When providing support for disadvantaged people, the environment in which the support is provided is directly related to the needs of the person. The higher the support needs of the person, the higher the intervention, which means that the environment will be more structured and institutionalised. The service provider may have a valued role and is valued within the community that it is a part of. The problem is that while the goal of most service providers is to promote their members within each community that they participate in (community options, access and employment) through the principles of SRV, the result may be that these communities may become a part of the service provider because of the nature of the disability and a lack of skills and resources in the community.

This is not a bad thing in as much as the members of the community of the service provider still have the opportunity to develop shared experiences and valued relationships within that community, as well as the other communities that the service provider is a part of, as long as the principles (formal and informal beliefs, values, roles, expectations and behaviours) of the service provider are consistent with the principles of SRV (PASS, PASSING). It does not mean that the support is devaluing or dehumanising. It does mean that the support provided is most appropriate to the needs of the person as well as the needs of each community (living, recreational, educational or employment).

This is not to say that people with high support needs will always be in a more structured and institutionalised environment. With the development of medical knowledge, practice, treatments, drugs, technological innovations, as well as informed social policy and decision making, and community involvement at all levels, people with high support needs will have the opportunity to move from one community to another according to their own needs as well as the needs of their community.

Just as people sometimes need the specialised care of a nursing home or hospital (they get old or have a debilitating disease or condition), disadvantaged people should be accorded the same right as any other member in the community in being able to access the appropriate care if it is not available within their own community. The Royal Perth Rehabilitation Hospital and Graylands Hospital Mount Claremont are examples of institutions in the community that provide institutionalised care in the community. While there is considerable debate about the desirability (value) of these types of facilities, my response is that the problem is not because of the institution and the building, but rather to do with the design, location, culture and organisation of the institution and the building.

Service role models:  (Top)
Service role models are services that:
... Are successful in providing for the needs of its members
... Have been tested in providing the best outcomes for the members
... Have a valued role within the community that it is a part of, and the wider community
... Act as a model for other similar services

Services that look after people with high support needs are often modelled around service models that are successful in providing for the needs of its members.

Models of service delivery:  (Top)
Least Restrictive Principle (LRP):
Person Centred Planning (PCP):
Transitional (T):

Normalisation and Social Role Valorisation provide the underlying foundation that each model is built on.
What is the service that we are providing?
Are we providing medical care?
Are we supporting a person in the work place?
Are we helping the person with their daily home chores, finance or teaching them life skills?
What skills and resources does the service need to provide the service?
What facilities does the service need?
What internal support mechanisms does the service need to provide the service?
What support mechanisms are a part of the service?
What support mechanisms are a part of the wider community?
(See Normalisation, Social Role Valorisation, the Least Restrictive Principle and Person Centred Planning)

How are we going to provide the service?
Any activity that we participate in usually involves some rules or restrictions that define the activity (can you imagine a game of footy where the players made up the rules as they went along? Or a living facility was used as a night club?). These define the activity and to a certain extent its members. There is also a code of behaviour (culture) associated with the activity that defines the community that is a part of the activity. At a Roman Catholic church, for example, the members are generally Roman Catholics and follow the traditions of the church. At a school there are the roles of the teacher and the students.

When planing a service model (PCP, LRP, TP etc.), the needs of the person need to be built around 1) the activity, 2) the community. A person in a social or recreational setting, for example, may need a different model of care (PCP) to a person who is supported in a home (LRP).
The model of service delivery (social, accommodation, medical, educational, employment etc.) depends on the type of service provided. The person in a social or recreational setting may need a volunteer or an aid that is employed by an agency (Social model), while the person at home would need a career or nurse (professional model).

Social model (holistic)  Service delivery is concerned with the person and how the service fits into the person. Services are designed around the person in order to enable the person to fulfill his/her needs in the best possible way. Any restrictions are due to the activity and the setting of the activity rather than the person. Accommodation, recreation, social groups etc. are activities that involve some sort restrictions as a normal part of the activity.

Professional model (specialise): Service delivery is concerned with a particular aspect of a person's life, e.g. :accommodation, medical, educational, employment, etc. The person has a particular characteristic that needs to be supported. The service is designed around that characteristic rather than the person as a whole. Professional intervention is required (nursing, social worker, career, taxi, etc.) that means that the person will be restricted in other areas. Through the development of new technology (medical, equipment etc.) it is possible for the person to be less restricted in other areas of his/her life, however the person may always need some sort of intervention in fulfilling his/her needs and be dependent on others.

The way the service is provided depends on the person's needs:
... people with low support needs will require only a small amount of support and the service will be less structured (behavioural, medical, specialised equipment etc.)
... people with high support needs will need a high amount of support and the service will be more structured around those needs (behavioural, medical, specialised equipment etc.).

Services that support people with high support needs may be separate from other community based employment and recreation groups because:
… the needs of the members may require specialised support that is not available within other employment or recreation groups,
… the networks for people with high support needs are generally within the service setting.

The service provider may actively support, through direct intervention, disadvantaged people in the community.
Any service that supports people with high needs will require:
... a facility that is structured to the needs of the person,
... a model of care that includes the social, medical etc. needs of the person,
... the structure of activities are determined by the needs of the person as well as the needs of the staff and others,
... the cultures, values, policies and behaviours of the administration and staff of the service provider.

When people that have a physical or intellectual disability are relocated to individual housing, supported accommodation etc., the service provider usually provides the support, or it is provided within the service setting.
... the goals, beliefs, values, cultures, roles and behaviours of the service provider provide the framework for identity and purpose,
... the facility generally functions within (but not limited to) three broad models of service delivery; social, medical and business,
... the service provider may specialise in a particular disability, activity or area of care,
... the service provider provides the buildings, staff and other services (transport, volunteers etc.),
... the service provider supports and maintains the needs of the clients,
... the service provider supports and maintains the needs of the service provider,
... the service provider takes on a certain amount of ownership in providing for their clients needs,
... people that have a physical or intellectual disability mostly socialise with staff and others who share the same characteristics.

Other activities such as recreation education and employment are generally provided in the service setting. Any community activity is usually co-ordinated by the service provider.
... the principles of SRV become a part of the activity,
... the environment and the activity may be structured in the least restrictive way for the person,
... the service provider provides the direct intervention in the needs of the person.

The service setting:  (Top)
Refers to the environment that the support is provided in. Can be accommodation, recreation, education or employment. The setting is usually adapted or modified to enhance social image and personal competence, e.g., allows the person to participate in the activity in the least restrictive way (as normal as possible for the person). How the environment is adapted will depend on it's particular construct to suit the needs of the person (low support needs Vs high support needs), the amount of adaptation that is needed to suite all members and how the members are advantaged or disadvantaged through the adaptation.

Types of settings :
Full integration
These are activities that are held in the same venue at the same time by groups/teams that have mixed characteristics (age, gender, height, ability etc.). These are social activities where people of any ability can mix or form teams (Able/Disabled Vs Able/Disabled etc.).

Partial integration
These are activities that are held in the same venue at the same time by groups that participate in the same activity (compete against each other etc.), but the groups are separated because of a particular characteristic of each group (age, gender, height, ability etc.). Again, there are lots of examples of these types of activities in the community. Abled and disabled who compete in their own groups at the same time at the same venue would have the opportunity to socialise before during and after the event.

Enclaves (separated)
These are activities that are held in the community by a group, but are separated from other groups that participate in the same or similar activity because of a particular characteristic of the group (age, gender, height, ability etc.). There are lots of examples of these types of activities in the community. Competitions etc. are generally held separately from other social activities.

Segregated (isolated) :
The activities are removed from the society and have no interaction with other communities.
Very rare these day to find examples of these types of activities, however, they do exist. People in prisons, in high security or solitary confinement are isolated from the wider community. The armed forces often have activities that are isolated and restricted to service personnel only. Some activities that people with high support needs participate in are sometimes isolated (restricted to the particular group and have no interaction with other communities - debatable and open to conjecture). You may be able to think of some other examples.

And finally : Fund raising/supporting activities
These are activities that are held in the community as an event that is designed to raise community awareness/profile or promote a particular illness, condition or situation, or support a particular charity, organisation or research group. The primary goal is to include as many participants as possible that are not a part of the group, in the activity, although it is not uncommon for representatives of the group to participate. May also be sponsored by a company or organisation that has an interest in the particular group.

Just because the service setting may be in a school, the work place, recreation center, special needs center or nursing home, does not mean that the activity is not a part of a community. There are many examples of activities today that are separated into able and disabled communities. To a large extent these are accepted as the social norm. The most prominent example is the Olympic games, where able athletes compete in one competition and the disabled athletes compete in another.

Ten pin bowling is another activity where we see examples of separated (competitions etc.), partial integration (school activities, bowling classes, special needs groups etc.) and full integration (social etc.). Education communities (schools, universities etc.) are other examples where these types of activities occur.

The Riding for the Disabled Association of Australia is an example of a community activity that is specialised (separated) in providing for people with high support needs. The association is a part of a world wide community that is not a part of any service provider and includes both able (as volunteers) and disabled members (and may include people with high support needs that are supported by a service provider or organisation). Whether the person with a disability feels a part of the Riding community would depend on his/her associations (connectedness) with the other members of the community.

The Riding community:
... has a role that is valued by its members and the wider community that it is a part of.
... there is a sense of purpose and direction within the community
... has ownership of its members
... has the skills and resources to provide for the needs of its members

The role of the service setting:  (Top)
Each of the types of settings described above is designed to fulfill a particular need of a group at a particular time. Participants have the opportunity to move from one type of setting to another (isolated, separated, partial integration and full integration etc.) according to their particular need at the time as well as the needs of the group or community that they are a part of.



Shows the relationship between the needs and the type of setting in which the activity is placed.
Participants have the opportunity to move from one setting to another according to their own needs as well as the needs of the community.

At a school, for example, we see all the above settings for different activities. We see different classes for different subjects, special classes for students that need help in maths or writing a thesis, one on one tutors that provide specialise support for a need etc. We see various recreational groups designed around an activity that requires a specific setting. Can you imagine trying to play squash on a footy oval, or a game of footy in a squash court? The members of the school community have the opportunity to move from one activity and setting to another according to their own needs as well as the needs of the school. Within the school we also have different communities, the photographic community, the chess community, the pub community etc. Members often participate in one or more communities, and have the opportunity to move from one to another according to their own needs, as well as the needs of others within the school community. Within the school we look for something that interests us or we are good at, as a way to meet others and share experiences and develop valued relationships. People with high support needs may have some difficulty in developing these relationships, but by finding the most appropriate community for the person, and introducing the person to others in the community is a start.

Think of any activity, can be shopping, going to the pictures, riding a bicycle, a game of chess, attending a lecture in nuclear physics etc.
What is the setting of the activity - isolated, separated, partial integration, full integration or a mixture?
What is the role of the setting within the activity?
What is the role of the activity within the setting?
What is your role in the activity, within the setting?
What are the roles of the other members in the activity, within the setting?

Types of service models:  (Top)
Four broad types of service models that support people with high support needs could be described as:
... Full integration
... Partial integration
... Enclaves
... Segregated (isolated)

Full integration:
The person is a part of and supported within each community that is most suitable for his/her needs. The service provider supports the community, where the community has the skills and resources in providing direct intervention (takes ownership).



(Click on image to view detail)


Partial integration:
People with high support needs may not be able to be a part of all communities because of the nature of the disability, or a lack of skills and resources within each community. Just because a person is a part of the community of a service provider does not mean that the person does not have the opportunity to participate in the activities of other communities.



It can be seen that while the person may have various interactions within other communities, the person is still a part of the service provider. This is not a bad thing, in as much as the person still has the opportunity to participate in other community activities. Whether the person feels a part of each community (Living, recreational, educational or employment) would depend on his/her associations (connectedness) with the other members of each community.

Enclaves (separated):
Where people that have a severe disability, or for some other reason may not be able to participate in any community activity, the service provider creates new communities (recreation, employment or education) within the wider community, or it is provided in another service setting that is a part of another service provider.



It can be seen that while the communities are separated from the service provider, they are still a part of the service provider or within the service setting.
The advantages over segregated services are:
... They are treated as individuals
... Have more variety in their life and daily living patterns
... More choices and decision making
... Able to socialise with others in different settings
... The opportunity to experience other experiences that are not available within the setting of the service provider

Segregated (isolated):
People that may have a condition or characteristic that needs full time intensive care, or may be a harm to themselves or others in the wider community are generally isolated from the rest of the community. Some hospitals (psychiatric, paraplegic etc.), nursing homes (aged care, dementia etc.), prisons etc. are examples of communities that are removed from society. While these communities are separated, there is still some interaction with the wider community by the staff, other professionals, family, friends, volunteers etc.





In all of the above, the person has the opportunity to develop relationships with family, friends, volunteers and others that are not a part of their community, and therefore has a greater opportunity to become accepted as valued members of each community that he/she participate in. People with high support needs may have more difficulty in being able to access the wider community, or a particular community that they wish to be a part of. Through the development of skills and resources within each community, as well as technological innovations, the person may have a greater opportunity in the future to become a part of each community.

Whether a person is in a integrated, partially integrated, an enclave or segregated community, he/she still has the opportunity to move from one to another according to their own needs as well as the needs of the wider community that he/she is a part of.

Services can also be a mixture of integrated, partially integrated, an enclave or segregated. A service may support people in their own community, as well as providing full time support in it's own facility (nursing home, respite or a group home etc.). The members also have the opportunity to move from one community to another within the service according to their own needs as well as the needs of the service.

The roles of the stakeholders:  (Top)
Three broad roles within the service provides ...
The roles of the management, staff and volunteers.
The roles of the clients.
The roles of the families, significant others.

The communities of the service provider:  (Top)
A service provider generally containes a number of communities (parts, teams or groups of people) that specialise in a particular skill or role. While these communities are a part of the service, they act independently of the other parts in providing a particular area of speciality that is not available within the other parts.

Just as communities have different power groups, a service provider may have different groups that jostle with each other in asserting their own agenda within the organisation. There may be "Turf wars" where one department may be seen to encroach on another's territory, or important information or a resource is not distributed to a department because of some internal dispute or power struggle. Personal conflicts can also contribute to a lack of coordination in service provision where there is more effort used in counterproductive behaviour than proving for the needs of the clients.

Where a service provider supports groups of people in different settings (nursing home, hostel, group home, recreation, employment or education), these groups are communities in their own right i.e., they share the same facilities, the members interact with each other etc.

While they share the institutions (the "social construction") of the service provider, they have their own "social constructions" that are particular to the group or facility and the activity. This is most noticeable in group homes that are supported by a service provider. Each home has its own unique characteristics that require different policies, routines etc., that are designed around the needs of the members of the group. Staff also play an important role in promoting or supporting particular institutions within the community that sometimes take precedence over the institutions of the service provider that the home is a part of.

The future of the service provicer:  (Top)
Services providers have become specalised in providing for a specific group within the disability arena. They provide the knowledge base, the skills and resources in supporting a particular group. As a result the wider community supports these activities.

Saturation point:  (Top)
Any service or organisation that grows above a certain size (saturation point : that the organisation can no longer function as an organisation, but rather as a collection of mini organisations) is dependent on it's departments in fulfilling their own roles within the organisation. These departments become specialised in providing a specific function within the organisation. Just as a person becomes specialised in a specific task, and the person looses the skills in other related tasks, the departments within the organisation may become so specialised within a role, that other skills that are important to the needs (overall health) of the organisation, become less important than the needs of the department. Each department may have budgets, performance criteria, targets, assessment programs etc. that determine the efficiency of the department, which means that the department becomes more concerned with it's own performance rather than the overall health of the organisation. Communication, cooperation etc. between departments becomes slow, uncoordinated and sometimes nonexistent (have you ever experienced the frustration of trying to deal with the government, a large bank, internet service provider or any large multi national organisation).

Full circle:  (Top)

Is this the future of services that support people with high support needs (aged, severe disability etc.) ????



While asyulms were origionally a place of safety or retreat from society, they became places of hardship, deprivation and depravation. What started as small hospital facilities soon became large buildings that supported hundreds of people. Built around a medical model of care, a culture evolved that enabled a small number of people to support a large number of people. Social policy was to hide these groups behind walls, where society was protected from the activities that happened within those walls. There has been a great deal written about the values, behaviours and attitudes of the system that supported the residents of these buildings within society. Because they were in long term institutional care, the term "Institution" referred to the building, the culture and the outcomes of the building and the culture. While the charasteristicts of this institutional care was similar to other institutions, the outcomes were different. Today, we see small services evolve into organisations that support different groups within society. Organisations are getting larger to cope with increased demand for services. As an organisation gets larger, more resources are needed to support the organisation. Things wear out and need replacing. New equipment and technology replaces old and outdated equipment and technology. Direct care staff need to be increased to meet the needs of its clients, which means more support staff are needed to meet the needs of the direct care staff.


The organisation also has its own needs in fulfilling its role in providing for the needs of people with disability.

If the service provider can not provide for its own needs or the needs of its clients, the culture and institutions of the service provider change,
so that the basic needs of its clients can be met, and other needs that are considered as not important are not met.


For example the normal staff ratio may be 1 staff to 4 clients. As the service grows, and the service can not get the extra staff because of a lack of funding, skills or available workforce, then the service has to prioritise needs as well as ration resources. Because the service provides direct intervention in supporting its clients there may be no other service that can provide support. The result is that the service may become the Asylum that Goffman, Wolfensberger and others wrote about in the past.

This is most noticeable in nursing homes where costs increase and suitable staff are scarce. The nursing home tries to cut costs and ration resources and as a result the clients are not getting all their needs met. Hospitals are also suffering from a lack of skills and resources. People are not getting the proper care, patients are left in corridors because of a lack of space, etc. etc. This also happens within disability service organisations where the needs of the organisation become more important than the needs of the clients. Administration, OHS, payroll, maintain, staff training, policy development, volunteer coordination, area coordination, medical staff, transport, recreational, employment, direct support staff, relief management, relief staff - just to name a few roles that the organisation may have - may mean that there are 200+ people supporting 100 clients.

The Community Living Project (CLP) - SA for example has approx 40 staff employed to support more than 20 and up to 30 clients, of which approx 20% need 24 hr support. Suppose this group was supporting 100 clients. It is not unreasonable to suppose that the group would need a minimum of 80 to 150 staff to provide the same quality of service. Imagine what the service would look like if it was supporting 200 or more clients. What would the service look like if it was supporting 600 clients, which could easily happen in the future.

Activ:
Activ employs more than 900 people (management, staff support and direct support).
Provides direct support:
homes to 250 people, assist another 82 in their own homes and deliver respite care to 268.
jobs to 1045 people with disability
= 1645 who receive direct support (source: http://www.activ.asn.au/)
= 1/1.83 staff/clients ratio

Would the service become the Asylum that Goffman, Wolfensberger and others wrote about in the past (both literally and figuratively) if the community did not have the skills and resources to look after their needs?

Lennox Castle Hospital  (Top)
Lennox Castle Hospital was designed as a twentieth century service provider that provided for the needs for 1200+ men and women.

Origionally a hospital
Was ahead of its time
Supported a large number of people with an intellectual disability

Roles:
To provide for the needs of people with an intellectual disability
Provide a secure setting.
To protect society from this group.

Characteristics:
Self contained
Strict rules and regulations
Division of groups ... staff/residents, male/female

Positive outcomes:
Residents basic needs are looked after.
Residents have the opportunuty to socialise with each other.

Negative outcomes:
Low expectations of the residents.
Large group of people seperated from the wider community.

Shift in public and Gov. oppinions, values and policy towards this group has ment that the residents of the hospital were moved to other places.
The life of institutional living is described through the experiences of a former resident (Howard Mitchell) as well as others that were living there.
"How do we make sense of what we saw? The video tells the story of the hospital in dramatic tones: we hear about a riot, escapes, punishment and drug treatment regimes. But we also hear about football matches, dances and friendships. Even so, they are only part of the story of 60 years and many hundreds of people's lives. We saw several volumes of detailed records. What can be learnt from so much information? How can Howard Mitchell begin to organise all these facts and accounts?" (Lennox Castle Hospital)

In order to support 1200+ men and women today the facility would need:
Assuming a direct support staff/client ratio of 1/4, there would need to be 300 primary support staff.
Management and other support staff would probably be 50-100.
Which means that the facility would need to support 1600-1800 people minimum, which is a lot of people.
Assuming a total staff/client ratio of 1/1.83, there would need to be app 660 total staff + 1200 residents = app 1860 staff & clients.

If you feel inclined to watch the videos that are at the site (highly recommended) some other interesting questions may come to mind:
... What are the values, attitudes and expectations of the community towards people with an intellectual disability as described in the video?
... What are the values, attitudes and expectations of your community towards people with an intellectual disability today?
... What are the characteristics of institutional life as described in the video?
... What are the similarities and differences between the characteristics of institutional life as described in the video and the characteristics of life in a service today?
... What are the outcomes of institutional life as described in the video?
... What are the similarities and differences between the outcomes of institutional life as described in the video and the outcomes of life in a service today?

The real tragedy in all this was a lack of skills and resources available within society, and of a set of activities, values, attitudes and expectations embedded into that society (institutionalised) meant that people with an intellectual disability were not fit to live a normal family live and share normal loving relationships that we all take for granted.



The role of Social Role Valorisation in the community  (Top)

labelling as a social phenomenon:  (Top)
People with the same characteristics, needs or interests generally socialise with each other. They share experienses, skills and resources, and support each other.

Society also groups people together .......
where they are classified as a part of a group by a bureaucratic process where individuals apply for support such as welfare, pension etc.
where they are placed in temparory or permanent care because they can not look after themselves, are a danger to themselves, or are a danger to others in society
where they are grouped together by government policy, organisations and services, and the media to promote their own agendas and raise their own profile in society
to rase awareness of a particular condition or situation that has an impact on their lives within society.

These groups become communities within society, and identify themselves as a community that is different from other communities within society. Society attaches a label that describes the main characteristics of that community. While a bikie community is different to a football community there may be some activities and behaviours of both communities that are simular.

Social labels (or social stereotypes) are a way to convey to others our standing within society. If I proclaim myself as a hippy, for example, I am telling society that I reject all things that society stands for. The way I dress, talk and treat others all characterise the social label that identifies a "hippy" from other groups in society. These social characterists also allow me to identify others in society that are "hippys". The expressions "Pommie", "Negro", "Spastic" etc were all legitimate lables that were used to described a characteristic of the person. Over a period of time, these lables took on a different meaning within society. Just as the expression "Gay" was used to describe an emotional state, that expression has a whole new meaning today. There are lots of other expressions that meant one thing origionally, and have taken on new meanings today. This evolution of language is propally due to new generations trying to find their own identity in society (speculation only).

While the phenomenon of social labelling is neither positive or negatitive, it can be manipulated by various social groups to promote a particular agenda or support a particular idea or paradigm. This happens all the time where different political groups try to sway social opinion to their way of thinking. The asyulm seekers from oversees are labled as "boat people". Some groups would attach a negative value and promote then as terrorists, job takers, bludgers and a burden on society. Others paint them as despreate people that have nowhere else to go and have suffered enough already. They tell us that these people are happy to be a part of our society and have a great deal to contribute.

Labelling is also a way to justify a particular social policy or practice. This is evedint in the way "Greenies" are portrayed as against commercial development and destroying peoples lives. Various governments (local, state and federal) have various programs in place to provide for the needs of the community, and where there is a protest about a particular development, their treatment is justified by showing that their actions will disadvantage us all. The label "Greenie" takes on a negative value.

A lack of understanding, skills and resources also contribute to labels taking on a negative value. People with high support needs, the aged, mentally ill and people with intellectual disabilities, even people with aids, cancer and dementia are viewed negatively because of a lack of understanding, skills and resources in society. Because society cannot support these groups, they are assigned a devalued status.

Just as labelling can be valued or devalued, the roles that are attributed to the label can be modified or changed to reinforce a particular characteristic, to support, justify or legitimise our treatment of a particular person or group. In all the above examples it can be seen that if society wants to portray (label) a patricular person or group positively, then the positive charasteristicts are reinforced, and as a result a positive role is assigned to the person or group. Alternatively, if society wants to devalue a person or group, the negative charasticts of the person or group are reinforced, which means that the role is devalued. This happens in all parts of society, both on a conscious and unconscious level.  People with high support needs that do not have the support structures to provide for their needs are often seen as a burden on society and as a result are assigned lables and roles that describe their circumstances. A person that has a mental illness, for example, may be accomodated in a hospital because that is the setting that is most able to accommodate the person's needs. Society unconsciously associates the picture of a hospital with all people with a mental illness and, as a result, that label and the associated roles are assigned to the person or group.

SRV (which itself evolved from the concept of N) is probably the most influential social paradigm used to provide a better life for people with disability. The idea of N (where all members of society have the same right to a the same way of life as others within that society) has been around for a long time. It has only been in the last 10 to 20 years that we have had the incentives, skills and resources to provide for a more humanistic approach to meeting needs of disadvantaged people in society. SRV is about social roles. Society tends to group people into different classifications or groups according to a particular characteristic of a person that stands out. Regardless of the person's individual differences, society generally assigns a particular role to all people that share that characteristic. This role describes the person's behaviours, and how we should associate with the person. Roles are also a way to visualise the person and what we may expect from the person. Some social roles are positive. Hero, friend, supporter, defender of the faith, aussie battler, statesman etc. all create a positive image of the person. Accordingly they are treated with respect and considerstion as valued members of society. Whether they are good people or not, is not as important as their social role. Other social roles are negative. Druggie, criminal, nigger, deviant, sick, dole bludger, alcoholic etc. all create a negative picture or impression of the person, and as a result, the person will be negitavely valued, and treated differently to others, regardless of any other positive characteristics the person may have. SRV shows us that disadvantaged people were devalued by society, and that by changing the way they are seen (their role), we change our behaviours and expectations, and add value to their lives by giving them the opportunity to participate in valued relationships and activities. Social training, PCP, the LRP and TP have all evolved from the principles of SRV. Each model is designed to allow (or facilitate) positive behaviours and attitudes within society, where the person to be able to participate, as much as possible, within each community that most suits the person's needs. These models of care could be thought of as the vechicle, SRV is the engine that drives each model of care, and government policy and practice serves as the highways and byways.

Some may say that by providing a valued social role for the person (to Enhance Social Images and Personal Competencies), we are actually changing the values of society, and by this process society is more accepting of the person, and the person will be included in the activities of the community that the person wishes to be a part of. I feel that while this may be true within a social context, it is an over generalisation in that members bring more to a community than their roles (Social Images and Personal Competencies).

Social:  (Top)
The term "Social" can also be thought of as two distinct concepts:
Implicit:
Social is used as a collective or a generalisation and conveys the idea of oneness or a united approach where everyone is included. "Society", "Social Role", "Social behaviour", "Social conscience", "Social responsibility", "Social Capital", "Social Change", "Social Security", "Social Inclusion" etc. all communicate a sense of something that we are all a part of. Interestingly the term can also convey an idea of remoteness, that although we may be a part of it, we are not directly involved or affected. "Social Inclusion", "Social disease", "Social reform" etc. "Social justice", for example may exist, but where is it when you need it.
Explicit:
"Social Democracy", "Social Club", "Social sciences", "Social work", "RSPCA" etc. are more specific in referring to an activity or group that specialises in things concerning society, descriptive in describing the activity or the group.

The term "Social" can also be both Implicit and Explicit and could be described as the person's "Status": a symbolic reference to the person's standing within society that describes his/her position or authority within society. The term "Highbrow" for example describes a person of high position or authority within a specific society. "White collar", "Blue collar", "Aussie battler" and "Underdog" etc., are also terms that describes or generalises a person or group within society and their respective position or authority. The aforementioned terms all have a positive value.

Role:  (Top)
There are many definitions of "Role" depending on the context in which it is used. Some would say that these roles are but layers (learned behaviours) that make up our inner person and we move from one to another according to the situation (interactionist perspective). Others would say that a role describes a behaviour that is characterised by the person (structural perspective). Others would say that roles are accumulating and changing (role transitions). Position theory is concerned mostly with story lines, that b follows a.

Roles can be divided into two sets:
Implicit:
Roles are generalised so that all members of the group share the same characteristics, behaviours and expectations as the individuals within the group rather than in the activity and setting. These are generally social roles, where the history of SRV comes form. Teacher, politician, deviant, lawyer etc. all convey an idea or picture of the role in society.
Explicit:
Roles that describe the person's characteristics, behaviours and expectations within the activity and setting rather than the group. These roles are descriptive in that they describe the person's relationships to the others within the activity and setting. A teacher could be a lecturer or professor in one activity and setting, and a father or a drunk in another activity and setting. A deviant could be a person with an intellectual disability in one activity and setting, and a son in another activity and setting.

Roles can also be both Implicit and Explicit, and are generally referred to as labels, that are attached to a person in describing a particular characteristic of a person within society, that is also ascribed to others that share similar characteristics. This particular characteristic is often used to describe a person's value within society. Wolfensberger goes into great detail in describing these labels. These labels are used as a means to identify the group and all members within the group, rather than the individual within the group. Bikie, druggie, dole bludger, alcoholic, gambler etc. are all negatively or valued. Friend, painter, gardener, gifted, father etc. are all positively valued.

Labels are also applied to buildings. The term "Institution" can be used to describe a hospital, nursing home or an asylum where a large number of people with high support needs are housed. Institution can also refer of a university, a center of learning etc. The term "Brothel" is sometimes used to describe a setting or facility that is so filthy or messy that no decent person would want to enter.

Valorisation:  (Top)
Valorisation ("to valorise", "to validate") is generally used to describe the process of giving or adding value to something, or to validate, recognise, legitimise something that is otherwise of no value, invalid, not recognised or illegitimate.

Social Role Valorisation:  (Top)
It can then be seen that the role of SRV is to - recognise, legitimise or add value to a person by recognising, legitimising or adding value to the person's role within the society in which the person lives.

Social roles are how we see ourselves and others in society. They are often about a particular characteristic (age, gender, race, ethnicity, culture, occupation, disability or even ability) rather than the person. A Muslim, for example, is often treated different because of his/her religion and culture. If the Muslim also had a particular disability or disadvantage, that person would have less chance of becoming a valued member in society. The same can be said for an aboriginal, a bikie or drugie, or possibily even a bank manager or used car salesman.

Yes the person may have a valued role in society, however, whether the person participates in their community is another thing altogether. Does the person have the skills and resources? Does the community have the skills and resources etc? Does the community value the person - as a person (and not the label or role of the person)? For instance a person may have a valued role as a policeman etc., but how the person is valued by others in the community is determined by the relationships and how the person relates to others in the community.

Organisations and service providers (active roles) indirectly provide these valued community roles through advertising, donations, volunteers, community activities etc. Media events such as Telethon and Appealathon, fund raising/supporting activities are designed to raise public awareness into the plight of disadvantaged people, raise the profile of the organisation or service and raise donations, volunteers etc. in supporting these groups (supportive roles).

This has the advantage of:
showing that these people are just like you and me
providing a better quality of life for the person
allowing the person to be more accepted in the wider community (but not necessarily a part of the wider community)

A person with a severe disability that cannot have a role assigned to them, or be placed in an existing role, still has the opportunity to be treated and valued the same as you or me.

They also act as a link between the person and the community. Employment services, for example, support disadvantaged people in the workplace. Other members of the workplace community become familiar with the person and this may lead to valued relationships within the workplace. The same thing can happen within a social, recreational or educational community, where the members become conditioned to the characteristics of the person.

Often an organisation or service provider may try to relocate a number of people into the same community. History has shown that this is not a good idea. When trying to introduce to many disadvantaged people into the same community, they may be seen as a threat to the community, and the outcomes of this have been well documented.

Normalisation, Social Role Valorisation, the Least Restrictive Principle and Person Centred Planning:  (Top)
Normalisation:
The principle of N can be described as:
“The N principle means making available to all people with disabilities people patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society.” (Bengt Nirje, The basis and logic of the N principle, Sixth International Congress of IASSMD, Toronto, 1982).

N then, is the process of providing disadvantaged people the opportunity to experience the same normal patterns of life and normal experiences as others in the society.

Social Role Valorisation:
SRV has evolved from N. The idea is that people are treated according to their social role. People with a high social role will have a better life style to people with a low social role. The conditions that people with high support needs live in is directly related to their low social role in society. Wolfensberger argues that these people are devalued, and that by providing valued roles – to Enhance Social Images and to Enhance Personal Competencies – people with disability will more likely be afforded the things that others take for granted.

Wolfensberger talks about how people with high support needs are devalued, and various strategies that can be used, where they can be included in the normal activities of society and are a part of society, through the development of valued roles, social images and personal competencies.

The Least Restrictive Principle:
Also referred to as the "Least Restrictive Alternative" usually refers to changing or modifying an environment or setting, that allows the person to participate as much as possible with the least restrictions, so that the person has the same opportunity as others to participate in normal community activities such as living, education, employment and recreation.

While SRV looks at the social values that these people were assigned by society (enhancing social images and personal competencies) and N looks at the activities and social settings that these people lived in, both paradigms contain elements of LRP, and are an attempt to normalise (or institutionalise) a particular behaviour, activity, expectation and policy within society that provides a better lifestyle for people with high support needs. Unfortunately, people with high support needs need various support mechanisms as a part of their life, and will always need a structured environment to meet their needs.

The LRP could also describe the least restrictive intervention, where, there is a choice of more than one intervention within a personalised support programme for a person. Just because the intervention is the least restrictive does not mean that there are no restrictions in the intervention. Mostly it means that there are different restrictions in the intervention.

Person Centred Planning:
PCP (http://en.wikipedia.org/wiki/Person_Centred_Planning) follows on from the ideas of N, SRV and LRP in providing a way of planning for the future.
The focus is on the person and his/her needs and finding the best ways the person can realise those plans. Supports are designed around the person, rarther that the person having to fit into the service. The goal is for the person to be able to live as normal live as possible, to have valued relationships, share experiences, and participate in normal social activities the same as others in society.

PCP is based on the assumption that the skills and resources are available in each community that the person wishes to participate in.

Transitional Planning:
Simular to PCP, TP is about planning a move from one setting to another setting. When moving house to another location, for example, there are a lot of things to consider in the move. Moving is not only about moving our posessions, it is also contacting any services (water, elect etc.), planning the move, scouting the new locating and finding the services and getting involved in the local activities. It is also about finding local communities and building relationships within those communities. This is a difficult transition for any normal person, but for a person with high support needs, it can be almost impossible and requires a specialised service that can facilitate the move.



When using the N, SRV, LRP, PCP or TP in relocating a person to another setting or environment, we need to ask:
Are we really acting in the best interests of the person?
Are we really acting in the best interests of the community in which the person is being placed?

The goals of N and SRV are designed to improve the lives of people with high support needs. Relocating a person may disadvantage the person in any number of ways.
Access to proper medical care
Access to social activities
The opportunity to develop valued relationships and experiences etc.
If the community (living, education, employment or recreation) that the person is being placed in does not have the proper skills or resources to provide for the person's needs that person will be disadvantaged.

Society, Roles, Values and Social Role Valorisation:  (Top)
Society :
While we are all members of the society in which we participate, people generally identify themselves as a member of a particular club, group or community within society (they may define themselves as a student, sandgroper, an Ausie, Muslim, Greek, Subi supporter, bike etc.).

I prefer to use the term "Community" as it implies a sense of belonging and connectedness between the members. Using the term "Community" forces us to ask; which community are we referring to, how does the person relate to others in the community, how does the community relate to the person. When the expression "Community Living" is used we may think of an estate or village, a suburb, a town or city. When someone says "I work in the community", the response may likely be "Ok, but where do you work and what do you do? Do you enjoy your work?". If I said "I live in society", I would be thought as strange.

The phrases "Community spirit", "Community living", "Community support", "Community well-being", "Community center", "Community of interests", "Community service", "Home and Community Care", "Community ownership" etc. all convey an idea and feeling of being a part of something, even when we are not a part if it, E.g. "Community Football Club". Using the term "Community" also gives us a better understanding of the relationships the person has in the activity, within the setting. By adopting a community approach, rather than a social approach towards service delivery and outcomes, we may have a better understanding of what we are trying to achieve and how we can achieve it. What do you think of when you see or hear the expression "Valued Community Role"?

When "Social" is used in the context of people and their relationships (roles etc.) with each other, it is applied in a generalised sense to include all members of all clubs, groups and communities. Therefor, the term "SRV" is used to describe the principles in providing a valued role for "devalued" people within all clubs, groups and communities, within society. While this is true in the Implicit (social) sense, I don't think that we can use the same generalisation in the Explicit (community) sense. We should look at the role in the context of the activity and setting, and fit the person into the role, or find the appropriate activity and setting that matches the valued role that has been created for the person within each community that the person participates in.

Roles :
Roles are objective in the sense that they can be measured, they have a function which is determined by the person, or others that the person associates with, within society (a community, activity or setting etc.). The example of actors in a play has been used extensively to illustrate this concept.

Values :
Values are subjective, they are determined by a number of factors. The values that we assign ourselves, others and objects are determined by our feelings, the activity, who are we doing it with, the setting, our expectations and the others in the activity etc. Wolfensberger describes values as being of three types; Idealised, Norm-linked and Operational (high order, medium order and low order) (Diligio: Social Role Valorization - Understanding SRV P.36). When participating in any activity, our values are directly related to the activity and others within the activity. We often see a conflict of these high order values that SRV refers to when trying to implement them in our normal activities. We may value freedom and the preservation of human life, but how often do we kill others in the quest for freedom. One person may value happiness as a high order value and wealth as a low order value, while another may value wealth as a high order value and happiness as a low order value. We may value/devalue the person in their role (teacher, artist, politician, policeman etc.) and devalue/value the person as a person.

Values in the objective (community) sense are determined by our relationships with others within the community:
what are the preconceptions that we may have of the other person
what are the expectations that we may have of the other person
how do we relate to the person
how do they relate to us
what are the similarities and differences in the relationship
how we see our own role
how we see the roles of others and how we relate to those roles
how others see our role and how they relate to the role

The value that is placed on the role could be positive or negative depending on:
the activity within the community
the setting within the community
our relationships to the other members of the community

Disability service organisations (in fact all organisations) have a set of principles, charter, purpose, mission or vision (high order values) that are a part of their constitution/objectives. These provide the ogranisation with a focus or direction for the members of the organisation and the community of which it is a part of. How often do we see these high order values being modified or compromised because of a lack of skills, resources or internal politics.

Social roles Vs Community roles Vs identity:  (Top)
SRV says (loose interpretation), that by arranging (changing or adapting) physical and social conditions of society at any level, so that devalued people are included, in such a way that their role is positively valued by all members of society, devalued people have a greater opportunity to receive the good things in life. (Joe Osburn: An Overview of Social Role Valorization Theory, P.1- 4)

The implications of the above has meant that:
institutions are bad evil places
people with disability are institutionalised and our goal is to de-institutionalise them
the principles of SRV can be automatically applied to any activity or setting so that disadvantaged people are positively valued
people who have a valued role in society automatically become members of the community in which they are placed
people with disability are automatically empowered

Another way to think of the above is: "By arranging (changing or adapting) physical and social conditions of all groups, clubs, organisations and communities within society, so that devalued people are included, in such a way that their role is positively valued by all members of the groups, clubs, organisations and communities within society, devalued people have a greater opportunity to receive the good things in life.

While the term Role is useful in describing our relationships with each other, I feel that there has been some confusion in the practical application of the term in service delivery and outcomes. Are we applying an Implicit role to a specific activity and setting? Are we applying an Explicit role to a social setting?

Our role in a particular activity is often predetermined by the type of activity, the setting and the other members of the activity. In a classroom, for example, (1): the type of activity is structured towards learning and the gaining of skills and knowledge in applying the learning, (2): the setting is separated (restricted to members that fulfill a set of criteria etc.) and (3): the roles of the members are Teacher (imparts the knowledge) - Students (learns the knowledge). In order for a person to have a valued role within the activity and setting, the person must be able to satisfy the criteria associated with the activity and setting. Introducing other roles into the classroom (social system) may create some problems.

The value of a person's role is purely subjective when applied to different settings and activities in different communities. We all have different roles depending on what we are doing, where we are doing it and who we are doing it with, and therefore the person's role takes on different meanings within each community that the person is participating in. Roles are like the clothes we wear. Each activity requires a different outfit (both literally and figuratively) The example of actors in a play also shows us that roles are learned behaviours. We all are conditioned to behave a certain way (we learn our lines from the moment of birth) according to the activity, setting and the expectations of others within the activity and setting i.e.: we don't wear our bathers to a formal dinner etc. It could also be argued that communities have become conditioned in behaving a certain way when looking after devalued people (in the historical sense, as well as in society today). All members are expected to behave according to their role within the setting. If a person's role is to be submissive, then, when the person takes on a more active role, the person may be punished.

Using the term "Identity" enables us to understand the person, as well as the various roles the person has within each community that he/she is participating in. It is immediately obvious what we are referring to i.e.: the person and not the role of the person. The concept of identity (as apposed to social identity or role identity - MASK, ROLE, AND IDENTITY; THE SEARCH FOR THE INNER PERSON) describes who they are, their feelings, their hopes and desires, their interests, the essence of the person as well as the characteristics of the person. By looking at a person in terms of his/her identity, we can see that the person's role is only a part of the person. If a person's identity is positively valued (by the mother, brother, school mates etc.) then sometimes, the role of the person is of little importance.

I remember a saying "You cant judge a book by it's cover. You have to read it.". We all have preconceptions about others and often we never really know the person, no matter how often we read the book. These preconceptions come from others, a characteristic that the person may have, our own feelings at the time, first impressions or any number of other reasons. Sometimes there is a negative chemistry that means that we may never feel comfortable in the others company. But at least, by looking past the person's role or particular characteristic we have a better chance of understanding the person for who he/she is.

Social Role Valorisation and institutionalisation  (Top)
SRV uses the concept of roles in the Implicit sense in that roles are used to generalise the values, behaviours and expectations (the institutions) that define the person or people within a particular group, the activity and the setting, as a normal part of society. While this generalisation is true in the most part, I think that it is unwise to assume that the institutions of all activities and settings share the same roles.

For example, Wolfensberger describes in his paper "The Origin and Nature of Our Institutional Models" the buildings that devalued people (intellectually or physically disadvantaged, sick, poor and destitute, criminals etc.) were institutionalised in. They are characterised by the values, behaviours and expectations within the building. Rather than being institutionalised in these buildings, they were placed in these buildings because of a lack of skills and resources (community, medical, technological etc.), or that they were a nuisance or different, or could not look after themselves. A culture evolved that allowed a small number of people to look after a large number of people. Once this transition happened, it became a normal part of community life (normalised in the community). The outcome was that people who were seen as different, can not look after themselves and need a structured life, were placed in large buildings that could provide their basic needs i.e.: they were institutionalised.

In our community, we see all sorts of activities that are carried out in buildings of a similar design that have similar institutions (universities, hospitals, hotels, office buildings, factories etc.). We also see examples of people being assigned a devalued status outside these buildings in communities.

Wolfensberger uses imagery (Semiotics- Signs and Symbols, Image Juxtaposition, Image Transference etc.) with great effect so that the reader has an idea of what it may have been like to live in one of those facilities as well as society in general, and how he/she can avoid the same thing in the future. Maybe he has done his work to well, in as much as the points that he is trying to make and concepts he is trying to explain have been absorbed into almost every corner of our culture with gay abandon.

Just because a person has a valued role and is living in a home by himself or with others does not mean that his life is any less institutionalised (in the context of SRV) than he would be when living with 20 or even 200 others.

Whether the person with a disability is institutionalised (in the context of SRV) would depend on the:
... the model of care
... the amount of support the person has
... amount of restrictions the person has
... the setting of activities
... the structure of activities
... the person's relationships with others
... the formal/informal cultures, values, policies, practices and, the behaviours and expectations (institutions) of the administration and staff of the service provider.

When moving from one community (living, recreation, employment or education) to another, for example, we take on the policies and practices, cultures, behaviours, rules and regulations - the normal rhythms - of the community. We have to fit into the particular institutions of the community that we are joining.
Sometimes when the goal is the de-institutionalise a person, all we end up doing is re-institutionalising the person.

By changing the cultures, values, policies, practices and, the behaviours and expectations of the community, where people with high support needs have a better quality of life, we change the institutions of the community.

To Re-institutionalise then, is to bring about, or normalise, a behaviour, activity or policy that supports disadvantaged people within a setting, where that behaviour, activity or policy becomes a part of the setting (institutionalised).

Social Role Valorisation and empowerment:  (Top)
Wolfensberger states that SRV has to come from somewhere else (Joe Osburn: An Overview of Social Role Valorization Theory, P.4) in providing valued roles for people with disability. Empowerment comes from the social structure (knowledge, skills, facilities, resources etc.) of the community and the social organisation (Policy process, hierarchy, roles, goals, beliefs, values, cultures etc.) of its members. While the two concepts may seem related, they are actually quite different.

The goal of SRV is to provide meaningful relationships and experiences (the good things) in a person's life through valued roles (Social Images and Personal Competencies) within their community.

Empowerment could be described as the process of enabling a person or group of people through
knowledge and skills
resources
experience
opportunity
self determination
SRV

Empowerment, has two perspectives which need to be understood within the context of participating in a community:
Empowerment in the objective sense i.e. that we are empowered to drive a vehicle
We have the knowledge and skills: a drivers license
We have the resources: a vehicle
We have the experience: debatable
We have the opportunity: we are physically able and able to drive the vehicle
We have the self determination: we need to get from A to B
We have the SRV: debatable, depends on our associations with others using the road

Empowerment in the subjective sense i.e. do we feel empowered
What is the difference between being valued and being empowered?
Do we feel empowered by being valued?
Do we feel valued by being empowered?
Is being a passenger in a taxi or on a bus a form of empowerment when we can't drive?
Is being a passenger in a taxi or on a bus a form of dis-empowerment when we can drive?
Can we do what we want on the road, do we want a bigger, faster car, do we care about the others using the road. While we are empowered in a sense that we can drive the car, we are dis-empowered in that we have to obey the law and respect the other road users. We may also become dis-empowered in that we become dependent on the car and lose our independence in living without the car.

While empowerment means different things to different people, there is usually a set of rights and responsibilities attached. Empowerment gives us the right to the goal, but there is usually something that we give up in the process (usually independence).

You may say that empowerment is the ability to have control over our own lives. Yes, that is true in the subjective sense, a person may feel empowered in one aspect of his/her life. The argument is an over generalisation in that no one really has total control over their own life.

Just like the fisherman who gave some fish to a friend in need. The fisherman values the person's friendship, and the person has a valued role in the community. After several days of the friend asking for fish, the fisherman had had enough and gave him a fishing rod and showed him how to catch fish. The person became empowered through knowledge and resources (gaining the skill and the tool to catch fish).

People with high support needs may have valued roles within the community and be valued by the community, however, because of the nature of the disability they may be dependent on others for their whole lives. The reality is that they may never be able to catch fish them selves. This does not mean that they are any less valued. They still have the opportunity to participate in the activity and share the experience of catching the fish, even though someone else caught it.

Alternatively, just because the person is empowered does not mean that the person is valued, or has a valued role in the community. Values come from our relationships and shared experiences with others in the activity within the community.

Community empowerment also means that there are rights and responsibilities attached. Communities can not always get what they want (there are lots of examples where they have not).

The role of Social Role Valorisation:  (Top)
When used properly, SRV is an effective strategy in proving disadvantaged people a better quality of life. However, the above shows that needs to be some caution in applying it's principles in any situation. Are we trying to empower a person through SRV? Are we trying to provide a valued role through empowerment? What is the person's role in the process? Does the person have the necessary skills and resources? What is the community's role in the process? Does the community have the necessary skills and resources?

What happens when the nature of a person's disability means that a positively valued role cannot be created for the person? People with severe CP etc. are not able to fulfill a role means that the value must come from somewhere else, rather than the role. We need to provide the community with a valued role (through various strategies) in supporting the person. A person with a severe disability that cannot have a role assigned to them, or be placed in an existing role, still has the opportunity to be treated and valued the same as you or me.

By using SRV in a supportive role that provides the foundation for the model of service delivery, rather than the model itself, we can see that values are more than a person's role (person centred), they are the way we share our experiences and relationships with others within an activity, within a setting (person <-> community).

Respect:
We need to respect the wishes of the community (school, person, family and relatives, and other members of the community) in their decision that the support or activity may not suitable, or that they want the support or activity provided in a certain way, even when it is against the principles of SRV. (as opposed to legal issues, human rights issues, moral issues, cultural issues, medical issues etc., which are beyond the scope of this paper). We can explain our reasons and the benefits for doing something a particular way, but we need to keep in mind that the customer is always right. We need to respect their institutions (values, customs and cultures etc.). Only by gaining their trust and confidence can we make any difference in their lives. Having the opportunity to learn from experience and make informed decisions about their lives is the first step towards empowerment. Also, by understanding their perspective, there is the possibility that we may learn something new through the experience.

Patronising:
It is too easy to patronise people that have high support needs. We may unconsciously behave in a way that may do more harm than good. An example is where a person has a painting or pottery that has the person's name on it, and it is obvious that the person could not have created the work him/her self. By rewarding the person for the work (e.g.: that's a great painting you did, and you got a prize for it, you are very creative) can be demeaning to the person. We need to focus on what the person can do and the positive aspects of the person. In doing this we are less likely to set the person up for ridicule or failure.

Communication:
Effective communication between members is vital to organisational planing. Communication is not a one way exchange. The community needs to be able to communicate with its members in order to achieve its goals. The members communicate with each other to share thoughts, feelings, experiences, skills and knowledge. Clear thinking and expression of thoughts is essential to effective communication. The community also needs to communicate with others outside the community. To function effectively as a community, the community needs to be able to respond to events that are outside the community and have an impact on the community. Communication allows the members to understand their role and the roles of others in the community.

Effective communication ..
all members feel a part of the process
all members are valued for their input
the community runs smoothly, efficiently and effectively

Over protective:
In the goal to provide "the good things in life" to disadvantaged people, there is a risk that we may shelter them from the perceived bad things. We may deny the person the experience of something we feel that may or may not be in the best interests of the person. We place our own values and experiences on the activity and make decisions, based on those values and experiences, on what the person can or can not participate in. The person is denied the opportunity to learn from the experience and make an informed decision about the experience. Instead of encouraging people to do things themselves,  we may do it for them because it is easier that taking the time to assist them. In time the person looses the skills that they once had because those things are done for them.

Placed in unrealistic settings:
People are sometimes put into settings that are often counter productive to the person and the others that are participating in the activity. While the intention is to provide a person with the experiences of everyday life, we may forget that others in the setting are also participating in the activity. We have a responsibility to the person and the others that the person fits into the setting as much as possible. In a train, for example, a person with an intellectual disability is walking up and down the aisle with the aide. The aide is familiar with the person's behaviour and assumes that the behaviour is acceptable. The behaviour is unsettling to the other passengers who are not familiar with the person and only reinforces their negative perceptions and expectations of people that have an intellectual disability in general. When traveling in a train the accepted behaviour (custom) is to sit down or stand stationary. Anyone (white, black, green or has a disability) that walks up and down a train will be seen as strange.

Place unrealistic expectations on others participating in the activity:
By including a person with high support needs (with an aide) in a classroom with other "normal" people, the person may be a distraction to the class, and the others are disadvantaged. If not done properly, it is possible that the others in the classroom may feel some resentment towards the person with high support needs being included in the activity.

Conflict of interests/policies:
Often, a person with high support needs has a number of characteristics that need specialist care. The person may have a medical condition that requires regular attention. Do we allow the person to participate in the activity with appropriate medical care, or do we deny the person the opportunity to participate in the activity because of the particular condition? Or do we deny the person the opportunity to participate because of a particular policy or rule of the service provider? Do we refer to the residents by their name (respect) or as a room number (confidentiality - this does actually happen).

Conflict in models of care:
Conflict between the values of the medical approach Vs the values of the social approach towards service delivery in providing the most appropriate care (providing medical care Vs providing a home like environment). People with high support needs often need special attention to their personal needs (feeding, medications at special times, toileting etc.). Do we take them out of their setting to give them their lunch in another more private setting? Do we wake them up three or four times at night to give their medications or check their pads, when the medications can be given and the pads can be checked, at other times. Do we insist that a person goes out for an activity when the person is sick, has a runny nose or a cold.

Balancing the needs of the person, with the needs of the others in the setting, with the needs of the staff, with the needs of the service provider:
In any setting there is always going to be a conflict in meeting the needs of all members. Staff can not be at two places at once, equipment etc. can only be used by one person at a time. Residents in an accommodation setting often have their independence taken away from them because staff have other things to do and can not spend time with the resident, or there is a lack of communication between staff and the resident, or the activity or behaviour of a resident does not fit into the routine of the residence. Staff are also often undervalued and taken for granted in providing support. Staff also need to be respected and valued in their role in supporting people with disability.

May be seen as a nuisance or a troublemaker:
Where a person with a disability is trying to standup for his/her basic rights, they may be punished for upsetting the normal routine of the facility. If a resident wants to stay up late, for example, they may be disciplined in some way or just ignored because the resident has always gone to bed at a certain time.
The immediate family of a people with high support needs may see something that they feel in not in the best interests of the person. They may try to step in to a work place and start telling the staff how to do their job.
They are seen as
:
Interfering in the workplace
Snooping into other peoples business
Interrupting the normal rhythm and routine of the workplace

Symbols of authority:
Within the service setting, we see symbols of authority:
Residents are often referred to as clients, patients or even room numbers.
Staff office.
Staff name tags.
Report books and charts.
Ownership of individuals through direct intervention in the provision of care.

Association to a service provider:
The service provider may promote itself in the wider community as supporting a particular group to raise awareness and support through advertising, signs, labels, brochures and various community activities The individual may be seen as an object of charity. Just as a group of school children become associated with a particular school, or people that wear leather jackets and chains are associated with bike groups, people with an intellectual or physical disability may become associated with a particular service provider.

Profiling:
Profiling is the practice of targeting a specific group according to a set of criteria (disability, age, income or activity). This practice may disadvantage some groups is as much as they may not be eligible, or the service may not be available in a certain area, or they are grouped together with others of the same characteristics.

Normalisation of practice
Over a period of time, a particular activity or behaviour may become embedded into the culture of the community (institutionalised). What may be appropriate at a particular time in a particular situation may become generalised (as a learned behaviour) and accepted a part of the normal routine of the community. Societies also absorb cultures and institutions from other societies where members of both live together. Sometimes members try to revive the cultures and institutions that have been lost. A resident used to stay up late, for example, and dance to music. The person always had a good sleep and was happy. With the change of staff, the person no longer stays up. The normal practice now is for the person to go to bed early. The person becomes cranky and difficult because 1) the activity has been removed, and 2) the resident spends an excessive amount of time in bed. All of a sudden the resident has a behavioural problem and as a result has a management plan as well as medications to control the behaviour.

Leadership:
Any formal/informal cultures, policies, values, behaviours, expectations within a community or workplace are generally determined by the community leaders, managers, or influential people within the community or work place. Strong leadership influences the behaviours of the members by the "style" of leadership. This is most noticeable in the workplace where the manager has a medical background as apposed to a public service background. While the values of the organisation are supported by both styles, the way in which they are carried out may be quite different. We also see the same thing in politics, where each party upholds the Australian constitution, they all have different policies, objectives and agendas. Weak leadership also means that the community can become unfocused on the goals of the community. Different power groups struggle for control, or the community tries to do to much, or not enough (uncoordinated).

The above examples show that SRV is like anything else that we use, it can be used for good or bad. Whatever the intentions are of the user it is important to understand it's limitations. Hopefully, common sense would prevail in a situation where there is a conflict between SRV and what seems the best for the person. Communities are not perfect places either. There will always be some sort of restriction on what we can and can't do within a community, and there will always be a conflict between possible choices and outcomes (what I would do and what someone else would do in the same situation). The most important thing is to learn from our experience and maybe have a better understanding of why we act in a given way in a given situation.

Think of your roles (1) within society, (2) within your community (Family, where you work etc.)
what are the similarities and differences in these roles?
what are your relationships with others in these groups?
what are the roles of others in these groups?
how do you value others within each group?
how do others value you within each group?
what are your expectations of others in each group?
what are others expectations of you in each group?
what are the institutions that may be a part of the activity or setting?

Social Role Valorisation and the community:  (Top)
SRV states that it is harder to change things at the top, and that by changing the person's roles (at a personal level, the immediate social system around that person (family, friends, colleagues, workers in institutions etc.), the intermediate social system that the person interacts with (people in shops, banks, organisations etc. plus those institutions themselves.) and the larger society- the socio-political-economic structures of society) may be just as effective (Diligio: Social Role Valorization - Understanding SRV (April 2004). P.79-80).

While people with high support needs are not locked up any more (in the context of SRV), there is still the separation of these groups in communities (and there will probably always be this separation). We also see organisations fulfill the same roles as the buildings that used to house them.

Rather that adapting an existing community setting to the needs of disadvantaged people, service providers often create new settings that fit into the needs of their clients. As a result, we see some service providers creating communities within the wider community. We often see the principles of SRV (integration and participation) being applied within the service setting (active role) where the wider community has a supportive role. Group homes are a good example of this where people are supported by a service provider. The clients are living in residences that are staffed by the service provider and often picked up by staff and taken to activities run by the service provider and socialise with others that are supported by the service provider. Yes they are living in the wider community and may have valued roles in society, but they are still a part of the community of the service provider. Just as in the opening example, people with disability may interact with other communities that the service provider is a part of, but are they a part of those communities? By using a Top Down as well as a Bottom Up approach, where each community (living, recreation, employment and education) has valued roles, and actively participate (take ownership), disadvantaged people are more likely to be valued as a part of their community.

"Social role valorization theory, originating in the study of developmental disabilities, pinpoints ways in which people with disabilities have been devalued by society, and it advocates, in response, greater access to valued social roles. Social role valorization theory is principally concerned with improving the experience of individuals who are disabled. The social model of disability, in contrast, emphasizes analysis of society. Grounded in the social sciences, this way of thinking locates disability not in the individual but in the barriers to individual accomplishment that disabling social structures, policies, and practices present. Social change, rather than valued roles, is what social model analysis calls for." (Connectedness and Citizenship: Redefining Social Integration)

I am not saying that SRV is a bad thing, on the contrary, people with disability would still be in the same situation as they were 100 years ago if it was not for SRV. What I am saying is that SRV needs to be put into the context of the community (rather than the community being put into the context of SRV), where the community has the skills, resources and valued roles in providing for the needs of its members (takes ownership). There are no perfect solutions, and communities will make mistakes, but hopefully they can learn from those mistakes and work towards building better communities for all their members, where the needs of people with disability are balanced with the needs of their community (takes ownership), rather than the current model, where the needs of people with disability are balanced with the needs of the service provider. By providing a supportive role, service providers can promote a more active engagement of the community in supporting the needs of disadvantaged people in the community.

There will always be a need for a service model that supports disadvantaged people, but, by involving normal community services and activities such as transport, medical support, recreation, employment and education etc. that are community based rather than service based as much as possible, the wider community learns new skills in providing for their needs.

The community learns new values, roles, behaviours, and skills, that eventually become embedded (institutionalised) into the culture.


Rather than building new communities around people with disability, maybe we should be building existing communities
that have the skills and resources and valued roles, where people with disability are a part of their respective community.

SRV is designed to enhance Social Images and Personal Competencies where disadvantaged people are more likely to be included in society (at a personal level, the immediate social system around that person (family, friends, colleagues, workers in institutions etc.), the intermediate social system that the person interacts with (people in shops, banks, organisations etc. plus those institutions themselves.) and the larger society- the socio-political-economic structures of society. (Diligio: Social Role Valorization - Understanding SRV (April 2004). P.79-80).

The paradigm focuses on creating valued roles for the person within the community. There is nothing about creating a valued role for the community, or the roles of the members of the community in supporting people with high support needs.

I feel that the SRV needs to be reformulated to include:

All members of all communities, clubs and groups within society.
Where they are all valued, and have a valued role in participating in each community (club, group or organisation) within society,
that is most appropriate to their own needs, as well as the needs of each community in which they participate,
where the outcomes are positively valued by ALL members of the community, as well as other communities that it is a part of.

The above has more relevance in today's society. Generally, the conditions that people with disability live in today have changed. They are more likely to have a valued role in society. Whether they are any better of today, as compared to the conditions that they lived in and the conditions of the society that they lived in, is open to conjecture and is being debated by the various stake holders in society. We see that the current formulation of SRV can not deal with the changing needs of the communities that people with high support needs are placed in.

A community approach to SRV, on the other hand, is more inclusive and more descriptive (explicit) in the sense that the term "community" can be used to describe our roles, relationships, behaviours and expectations with each other. A school community, for example, is different to a living community, which is different to a recreational community. While each community is different and has different outcomes, they share similar characteristics and institutions.

A valued community role :  (Top)
When we change the perspective from Society to Community we have a better idea of what we are trying to achieve. Community is all about valued relationships, about careing and shareing, about being with others we love (Understanding communities). SRV is all about providing those valued relationships and support networks to disadvantaged people who have been disenfranchised by society for various reasons. Valued relationships transcend roles. Without others to share our feelings with, life becomes meaningless. It does not matter how much money or possessions we have, if we have no one to share it with, life becomes meaningless. SRV is all about Building values and relationships in communities. These communities may be a part of an organisation or service provider, a family or club, or work, or school. By providing valued roles for ALL members of each community that the person wishes to participate in and is most appropriate for the person (Disability services role models), the person is more likely to have valued relationships within those communities.

The above also means that the community (living, recreational, education or employment) is more directly involved in the process. By understanding the roles of communities, and how they relate to their members, and the role of the various institutions (their
"social construction") of these communities, all members are valued and have a valued role within the community that is most appropriate for their needs.

We (that do not have a disability) have the choice to participate in the community that most suits our needs. We have the choice to go to a hospital when we are sick. We find the recreation community that most suits our interests. We have, or find, something of value that we can bring to the community. Even in a school or university, we bring some skills and experiences and use those as steps in a ladder to gain more skills and experiences. We develop relationships, acquaintances and friendships, and form groups (mini communities) where we support each other. Each community is valued by it's members as well as the communities that it a part of.

Of course this is only in theoretical realm. In reality things do not happen this way. Communities are not perfect places and the members are not perfect. In all communities there are good things and bad things and we can never get everything we may want. We may never always get the community we want, and have to compromise our values or ideals or expectations in being a part of a community. We see this all the time where people find the security of the community more important than the way they are treated or that the institutions of the community are against their own principles. We also see hidden agendas, internal politics, power plays, where members try to change the community for any number of reasons.

Communities are the very essence of how we see ourselves; see others, our roles, behaviours and expectations of others and ourselves. They are the means by which we fulfill all other needs. Without a purpose or reason for living, other needs such as food or shelter may become meaningless. Sometimes the needs of food and shelter come before our choice of community that we want to be a part of. To some extent communities are determined by our own deeds. We may choose one community over another to satisfy those needs, however, it is the community that we have committed to that ultimately fulfils the particular need.

A successful actor/singer may choose the community of his/her profession (the glitz and glamour, the fans etc.) in order to fulfill his/her needs of food and shelter rather that the community of a family. Alternatively, we may want to work as a lawyer, for example, to feed and shelter our self and our family, but can only find work as a gardener or something else that we would prefer not to do. In this case it is the community of the family that keeps us going. Community provides the motivation, the support, the strength to carry on. It is this internal bond with others that we love and care about that bring a sense of reality to our lives. Where a person has lost the will to live because of a severe injury, illness or disability. They may become disillusioned, isolated, may be angry or have some hatred for the system that put them there. They need the care and support (valued) just as the other members of the community need the care and support (valued) in looking after the person. Even people with severe mental illnesses need the care and support within their own community where they are valued as a part of their community.

Whether the community is a part of another community, an organisation or service provider, a nursing home or an asylum, a home or a group home, a company or sheltered workshop, a community recreation group or a disability recreation group, the principles are all the same. The members need to have valued roles and be valued within their community, where the community is valued by its members as well as the other communities that it is a part of.

Even a prison, we see communities within communities. We see various groups that support each other and the members are valued within each group. There are rival groups that compete with each other for power within the prison. There are particular cultures (institutions) within these groups within the culture (institution) of the prison. The prison is also a community within the wider community where the members of the wider community are protected (valued role) from the members of the prison. The prison also has a valued role in re-institutionalising (corrective services) its members where they are able to participate in and contribute to the wider community in a positive way.

Within a disability service provider we also see various groups that compete with each other for power. We see the members of each group support each other and the members are valued within each group. These groups have various cultures (institutions) within the culture (institution) of the disability service provider. The value of the disability service provider is determined by the value of it's outcomes for the members of the disability service provider, as well as the members of the wider community that it is a part of.

From the above it can be seen that the values of the outcomes of the community and its members
within the wider community determine the value of the community within the wider community.

Social Role Valorisation and Marxian Valorisation theory :  (Top)
The value of something is determined by the society, community or group and the members of the society, community or group.
Is the value of the person determined by the value of his/her skills and resources?
Or is the value of a person determined by the value of the relationships and shared experiences?
Each of the above is valid.

The value of each is determined by the setting, expectations and values of the members of the society, community or group. A person may be positively valued for their skills and resources, but negatively valued for their relationships and shared experiences. Alternatively a person may be negatively valued for their skills and resources, but positively valued for their relationships and shared experiences.

SRV loosely says or implies that the value of the person is determined by the value of his/her personal and social characteristics and competencies (roles), and that by enhancing these roles (through the development of personal and social characteristics and competencies), a person's role is enhanced.

Marxian valorisation theory loosely says or implies that the value of the person is determined by the value of his/her productivity rather than his/her personal worth, and that by enhancing the person's selfworth (through the development of personal and social characteristics and competencies), a person's productivity is enhanced.

I remember watching a video about a study done in the Hawthorne Works of the General Electric Company in Chicago (
The Hawthorne Effect). In one test, the workers were asked for their input in how things could be made better to improve their working conditions. The response was that the lighting could be brighter. So the management made the lighting a bit brighter and the work improved in quality and quantity. The management then asked if workers how they felt about the lighting and asked them if they would like it brighter and the response was: yes. The management then did nothing, but gave the impression that they were interested in the welfare of the workers. The outcome was that the quality and quantity improved even though nothing had happened.

There has been much debate over the outcomes and value of the
study, however whatever the criticisms are, the fact that the output improved through having more participation in the decision making process (real or imagined) is still valid. The project also showed that while the conditions may not have improved, the fact that an observer was present and interested in their performance may have been enough to improve productivity.

"The original research was revelationary, extensive and complex, and an enormous number of secondary sub-commentaries, partial reinterpretations and re-reinterpretations were spawned. These discussions and criticisms continued heatedly until about the mid 1980's, when all of the discussion around Hawthorne was scrutinised under the light of the original work in a series of comprehensive reviews and articles (for example, by Jeffrey Sonnenfeld). It was found that the original report remained untainted." (Hawthorne-academy)

The focus of SRV is Social Image Enhancement and Competency Enhancement, where disadvantaged people are able to be accepted as valued members of society and live a more normal life. The focus of the Hawthorne Effect was to engage the workers (real or imaginary) in the decision making process.

It could be argued that SRV contains elements of the
Hawthorne Effect:
... The institutions of the clients (in the institution) and workers (in the factory) are negatively valued
... The settings, behaviours, expectations, values and roles of the clients/workers change
... The clients/workers are enabled through these strategies in becoming more productive members of their community
... Both strategies are designed to increase clients/workers value, in their community

Whether the outcomes of these approaches are positively valued really depends on the values of the stake holders. In a factory, for example, the outcomes may be positively valued by the management, where productivity has increased, and the workers, where they believe that they have a more valued role in the factory. In a facility that supports people with high support needs, outcomes are measured by a tool (PASSING, Wolfensberger, W. & Thomas, S. (1983)) to gauge the effectiveness (value) of SRV. Whether the value of the outcomes of PASSING are consistent with the goals of the service and SRV is dependent on a number of factors (2).

As far as I am aware there has been no study on using the principles of SRV and the PASSING instruments in a normal setting, where the principles of SRV are applied to workers in a factory or students in a classroom. You may say "Whats the point of that
?" and my reply would be "If the principles of SRV are effective strategies in providing Social Image Enhancement and Competency Enhancement for people with disability, why can't they be effective strategies in the work place, the classroom or any setting where people may be devalued or their self image is poor. By enhancing Social Images and Personal Competencies of the members of a community (accommodation, workplace, school etc.) I would assume that the members would benefit. However this is all theory until someone decides it is a worthwhile project.

Any way, the point I am trying to make is that it could be argued that: the goal of SRV is to enhance Social Images and Personal Competencies, where devalued people are able to lead a more meaningful and productive life (receive the good things), where they have the skills and resources and valued roles in being a part of society. The implication is that the person is valued as a friend, worker, painter, writer etc., and through this process the person may by valued as a person. A person with a severe disability that cannot have a role assigned to them, or be placed in an existing role, still has the opportunity to be treated and valued the same as you or me.

In both paradigms, it is the outcomes of the approach within the accommodation, workplace, school etc. that are either positively or negatively valued. Marxian valorisation has criticised the values of the management in their treatment of the workers in a factory, and SRV criticises the treatment of devalued people within society. However, is it possible to change the outcomes through various strategies (negotiation, valued roles etc.) where the workers/devalued people are positively valued in the workplace, facility or the community

SRV: Looks at the person and the ways the person can be more included (
Social Image Enhancement and Competency Enhancement) in the normal activities of everyday living. Marxian valorisation : looks at the value of the person and how the person can be valued as a person and not a commodity.

So, it could be argued that SRV is consistent with the Marxian valorisation theory in that both paradigms place an important value on what the person contributes to the community (workplace, school etc.). Marxian valorisation theory has a top down approach and SRV has a bottom up approach.
SRV and Marxian valorisation try to change the institutions, (values, roles, behaviours, expectations and settings etc.) where the person has a valued role within the setting.

Is it Social Role Valorisation?  (Top)
At primary school, for example, you are a teacher, and are introducing a new person into the class.
You may say to the class "Class, This is Johnny, he is new here and looking for some friends. He likes to play footy, etc., etc. Who wants to show him around the school and help him meet some friends?". "Who wants to help him with his homework?" etc., etc. ,,,,

In doing this, you are creating a positive environment where the class has a valued role in supporting Johnny as a group, as well as providing valued roles for the members in the class.

This does not mean that Johnny has a valued social role yet. That is determined by his relationships with the other members. If Johnny connects with the other members through shared experiences and valued relationships, then Johnny has a valued social role. If Johnny is in the class with another person (introducing another role), the others in the class may resent his inclusion. If it is not done properly Johnny may not develop any meaningful relationships. The other children in the class also learn that this is a normal part of the community of the classroom where their role is not inclusive in supporting the person.

Johnny may also have the opportunity to connect with the other members of the school (rather than the class) that he is a part of, through shared experiences and valued relationships.

The implications of this are:
... the community of the classroom has a valued role in supporting new members
... the children may learn a behaviour that is inclusive (welcoming the new person)
... the children may learn some tolerance and acceptance of others who are not the same as themselves (accepting the new person)
... the behaviour may be transferred to other areas of the child's life
... the behaviour may be normalised (institutionalised) as a part of the culture of the classroom.
... Johnny may become valued as a member of the classroom (SRV)

This can happen in any group at any level. At church or a sports or social club, new members are introduced to other remembers in formal or informal ceremonies as way to welcome the new person.




Part 2 .......................

Discussion about each community, how each community fulfils a particular need in society and its impact on people with high support needs.



Crisis point (Top)

Communities (recreation, employment etc.) are not the same as there were 20 or 30 years ago. The telephone, radio, TV, motorcar, and now the Internet has changed our world forever. Advances in medicine, technology, health and knowledge in various conditions has meant that people with high support needs are living longer and healthier today. This group is becoming larger each year. Of course these groups should have the same opportunities and rights as anyone else in the community. I am not advocating that we should lock them up or anything like that, however, we should provide the most appropriate care for the person as well as each community that the person is a part of, where the community has the knowledge, skills and resources to look after their needs. Whether a person is a part of the community of a service, or a number of communities, the person should have the same opportunities as others within society.

"The Western Australian population will increase by about 22 per cent to more than 2.55
million people between 2008 and 2023 with most increase in the over 65 age group.
The total number of person's who identify themselves as having a disability will increase
by about 38 per cent to around 632,600 by 2023." (DSC : Disability Future Directions, 03/2010 : P.37)

We talk about the new generation and what they may do with their inherence.
... What will families be like in the future?
... How will they look after the needs of you and me in 30 or 40 years time?
... Will communities have the knowledge, skills and resources to look after our needs?
... What will be the role of a community in supporting people with high support needs?
... What will be the role of Gov. policy and practice in supporting people with high support needs?
... What will the current service organisations (ACTIV, TCCP etc.) be like in 30 or 40 years time?
... Will we depend on these organisations in the future?

Families have lost their knowledge, skills and resources in providing for the elderly. The socially accepted thing these days is to place them in a nursing home while we carry on with more important things. Other communities
also have lost the knowledge, skills and resources to look after the needs of disadvantaged people and rely on organisations instead. Today we see a rising population, which is getting older, resources are being stretched, pressure in existing services is increasing etc. etc. I would not be surprised to see these current service organisations (ACTIV, TCCP etc.) become the institutions that Wolfensberger and others wrote about in the past (full circle). In fact I really think that it is already happening today and it's to late.

Maybe it's the society that we live in, that we need to deinstitutionalise, rather that the disadvantaged people that we are trying to deinstitutionalise. We need to provide valued roles to families and communities in looking after the elderly, people with disability and other disadvantaged (poor and destitute, and other medical conditions) so they have a future.



The role of the family in the community  (Top)

Families are groups of people that have strong bonds with each other.
They are connected with each other through bloodlines (brothers, sisters, nephews, cousins etc.) or some rite of passage or ritual that recognises the person as a part of the family (marriage, adoption, initiation into a family etc.). A
group of people with criminal activities is also refered to as a family.

Have a defined set of roles, values, cultures, behaviours, expectations etc.
Ownership: The members feel a part of the family
Support
Trust
Share resources
Security

The traditional idea of a family unit, where the members spend time together, where the elderly are respected and looked after as a part of the family, where a person with high support needs would be looked after by the family, where the members are dependent on there own (or friends) resources are almost gone. When a family could not cope, they could ask for help from their friends or a local community group such as a church, school or community service group (Rotary, YMCA, Lions, Salvos etc.) or the local hospital. The community managed to support itself. There were no government agencies as we know them today around then.

Marginalised groups (aged, people with disability, poor and destitute, ethnic groups etc.) were devalued and still are today, and will probably always be. However while some practices were seen as cruel, these families and communities did the best they could with the knowledge, skills and resources that were available at the time. The aboriginal culture for example was also regarded as primitive, barbaric and uncivilised, but we are just beginning to appreciate their way of life. If you have an honest look at our own society today and what we do to each other, the aboriginal culture may seem tame in comparison.

The decline of the family and reliance on government support.



The role of the living community  (Top)

The right to accommodation that most suits the person's needs, and access to other community activities and facilities.

Just because the person with high support needs is living in a single dwelling, a group home, an enclave or an estate etc. that is managed by an organisation, service or a local community group (LCG), does not mean that that the person does not have the opportunity to develop valued relationships and shared experiences within the community of the facility and in the wider community. The person also has the opportunity to meet with others in the wider community (neighbors, at the shops etc.).

By the inclusion of representatives
of other community groups in the LCG (LAC - Local Area Co-ordinator -, local club, local school, church etc.), strategies and solutions can be found where people with high support needs are valued and have valued roles within that community, as well as other communities that the community is a part of.

Through the development of community links and networks, solutions can be found to issues such as:
transportation
medical needs
specialised equipment
personal needs
etc.
within the wider community

The person still has the opportunity to access an organisation or service (LAC and other Gov. dept's, TCCP, Activ, Swan taxies, IDEntity, HACC etc.) that specialise in a particular area of care for the person, within the facility that is co-ordinated by the LCG.

The living community gains the skills, knowledge and resources to provide for the needs of its members.

New generations, new communities.
Changing values, institutions and cultures, and how they change the way we relate to each other in a community.



The role of the recreation community  (Top)

The right to participate in those activities that are most appropriate for the person towards developing valued relationships and shared experiences within that community and the wider community.

The club, group or organisation's role is to provide activities designed to fulfill the needs of its members.
With the help of the LCG solutions can be found where people with high support needs are a part of that community.

Depending on the person's needs, the recreation can be within a community facility, the wider community or a mixture.
People with high support needs still have the opportunity to develop valued relationships and shared experiences in a non participatory sense:
Bowling: teams of abled/disabled Vs abled/disabled can compete against each other.
Painting: can participate in social outings etc.
Stamp club: the person has an opportunity to learn about stamps
Photo club: the person can not take photos, but still has input into the process and discussions on photography

Fishing: the person still has the opportunity to participate in the activity and share the experience of catching the fish, even though someone else caught it.
Horse riding: the riding community may have a buggy etc. where the person has the opportunity to go riding with the other members.
Etc.

Each recreation community that the person is involved with gains the skills, knowledge and resources to provide valued relationships and shared experiences.

The merging and separation of different cultures, and their impact on the way we define recreation.



The role of the education community  (Top)

The right to the development of skills and knowledge towards a more active and productive engagement with others within the wider community (valued roles).

The role of education is to provide
of skills and knowledge to it's members.
In a classroom, for example, (1): the type of activity is structured towards learning and the gaining of skills and knowledge in applying the learning, (2): the setting is separated (restricted to members that fulfill a set of criteria etc.) and (3): the roles of the members are Teacher (imparts the knowledge)- Students (learn the knowledge). Introducing other roles into this community (social system) may create some problems.

This does not mean that people with high support needs are disadvantaged. On the contrary these people will be advantaged in that
(1): the education is designed to suit their needs and, (2): may encourage the development of valued roles within the community if done properly.

Through the co-ordination of the LCG, solutions can be found to issues such as:
transportation
medical needs
specialised equipment
personal needs
etc.
within education community

Just because the person is in another class, does not mean that the
person does not gave the opportunity to develop valued relationships and shared experiences within the facility.

The ability/disability of education community to provide the necessary skills and resources to communities in providing for their own needs, as well as the needs of
their members.




The role of the employment community  (Top)

The right to a more meaningful and productive life.

Gainful employment means: being able to fulfill our needs, provides us with a sense of value and worth in ourselves and others, as well as an achievement an satisfaction in what we do.

By being a part of a LCG representatives of the employment community can be more actively involved in developing strategies that support people with high needs.
Through the co-ordination of the LCG, solutions can be found to issues such as:
transportation
medical needs
specialised equipment
personal needs
etc.
within the employment community

Local community services are a start to people becoming a valued resource in the community.
Bob's gardening
Paul's painting

The employment community would have the support of the LCG in providing the skills and knowledge in providing for people with high support needs.
The facility may be a home, work place, office or factory. The setting may be separated,
partially integrated or fully integrated. The most important thing is that the person has the opportunity to participate in a gainful activity, and be valued as a part of that community.

The ability/disability of employment community to provide the necessary skills and resources to communities in providing for their own needs, as well as the needs of
their members.




The role of the health community  (Top)

The way innovations in social services, health and medicine are redefining communities.



The role of the internet community  (Top)



The role of technology in the community  (Top)

The way new technology is redefining our understanding of communities.



The role of government policy and practice in the community  (Top)
Government policy and practice (the institutions of government, and how these institutions determine the decision making process towards interventions in community practice).

The various programs or strategies designed to support disadvantaged people in society have evolved through a process that could be best describes as "trial and error" in response to various social issues within society. Government resopnds to an issue by creating a department to deal with the issue.

Universities and institutions use historical and evedance based research related to the issue within that arena.
People with an intellectual disability are supported within the psychiatric/developmental arena
People with a physical disability are supported within the physical/occupational arena
The aged are supported within the gerontology arena

Each Government, state, department or locality has a different approach to supporting disadvantaged people in society..
There are a number of reasons for this
... Historical development of government policy: Each government has a different economic and social structure and a different politicial framework that fulfills the needs of the state.
... Political
agenda: While a particular political party sets the agenda in policy and practice within a state, it is the social institutions of the various departments that determine how the policy and practice is used in wider community.
... Community needs: Each policy has evolved to suite the needs of the state. Because each has different needs, these policies will be different.


(Leutz (1999: 83-87), from Michael Fine1, Kuru Pancharatnam and Cathy Thomson, Social Policy Research Centre,
Coordinated and Integrated Human Service Delivery Models, Final Report, March 2000,
http://www.sprc.unsw.edu.au/media/File/Report1_05_CoordinatedHuman_Service_Delivery_Models.pdf)

GOVERNMENT INSTITUTION
Community disability services: an evidence-based approach to practice : 2006 : Ian James Dempsey, Karen Nankervis
Supporting the housing of people with complex needs : September 2007, AHURI Final Report No. 104



The role of the Local Community Group in the community  (Top)

A community group that helps people help themselves.

What is a local community group
?

What is a local support group
?

What is a local community service
?



Personal reflections  (Top)

The good life  (Top)
Today disabled people generally have more opportunities to access social activities (shopping, movies, functions etc) that most of us take fore granted. Various government policies are designed to allow entrance to buildings, parks and other venues so that disabled people could participate in and share the same experiences as others in society.

The goal of the human services is to make a positive difference in a person's life. There are things we can change (values, attitudes, behaviours, cultures etc.) and things we can't change (available resources etc.). By enabling people to fulfill their needs, develop community networks, participate in activities and share experiences within their community, they have the opportunity to become valued members of their community. Conversely, by enabling each community to fulfill the needs of its members, to foster and develop personal networks within that community, to facilitate strategies, solutions and activities so that all members have the opportunity to participate in those activities, and connect with other members through shared experiences and valued relationships, the community has the opportunity to become valued by its members as well as other communities that it is a part of. By providing each community with the skills and resources and valued roles that include people with high support needs, these people have an opportunity to participate in activities, share experiences with others and become valued members of each community.

"The good life" means different things to different people. Only by developing the necessary skills, networks and valued relationships within his/her community (living, recreation, education or employment) can a person participate in, and become a valued part of their community. The needs of the person also needs to be balanced with the needs of the community in providing the most appropriate outcome for the person (people with high support needs will need a more structured setting than people with low support needs).

"The good life" could be described as: having the opportunity to participate in activities and share experiences etc (whatever the setting, structured or unstructured), in a positive way, where all the participants have valued roles. Although the settings are more structured and therefore more restrictive, it is possible for people with high support needs to have as good a life as possible that is most appropriate to their needs. (See also Disability services role models).

A question of values  (Top)
One key element in the discourse of disability is the idea of values. Values form the basic premise and motivation in any human endeavour. We do something because we find value in, or attach a positive value on the activity or the outcome of the activity. Conversely, we do not do something because there is no value in the activity, or the outcome of the activity is negatively valued. The idea of values is purely personal in their conception and execution. However, these values come from somewhere. They may come from our parents, family, peer group, the community or the society that we live in. They also come from our experiences. Values are also based in knowledge and understanding of the world around us. They are also based in ignorance, myths and legends. They are also based in culture and history. Values determine how we interact with others and the world around us. We consciously and unconsciously make value judgements about ourselves and others around us.

Often there are a set of values that we use in these associations ...
... Do we value one thing or another?
... What is the value placed on something over something else?
... What happens when something happens that does not fit into our set of values?

I would argue that the idea of value is neither positive nor negative, but rather determined by our own needs at the time. In fact, the idea of values is such a nebulous concept that it would be better if the idea does not exist at all. Values are no more than an attempt to rationalise what we do and the way we do it. If I choose to starve, rather that steal food, I may be making a decision based on my respect of someone else's property, or that the food is not fit to eat. You may say that it is a positively based value. You may also say that it is a negative based value. The idea of a positive or negative value is meaningless, and that the value (positive or negative) we put on the value is determined by our needs at the time, the family and culture we live in and the society that we participate in. Gold, for example, is highly valued in society today. But how much value is it if a person is in the desert with no food or water.

Some may say that values are based in some form of truth or reality. But what is truth and what is reality? But wait a minute, you may say, and then quote some meaningful passage from some great philosopher. This is true and I do not disagree with your argument, however any philosophical idea or concept is only an attempt to rationalise a particular point of view. While this point of view is based in the real world and the observation of human behaviour within the real world, it can only describe the truth of the reality as the observer sees it. Others would say that values (or even a lack of values) are part of a journey towards discovery and enlightenment. Others would say that values also come from ignorance and misunderstanding. That values come, not from our own experiences, but from a perceived or imangined positive or negative outcome of an activity. Again, I would not disagree with you. I am not going to critique every philosophical point of view, there are already volumes written about the advantages or disadvantages of any theory. There are a lot of different perspectives on human behaviours and interactions, and it could be argued that they are all right according to the particular perspective of the author at the time of writing.

Any way, the point that I am trying to make is that unfortunately, values are an important part of the way we see ourselves and interact with each other. This happens at all levels. At the personal level they allow us to live with each other where everyone has the same attitudes and expectations in how we treat each other. At the family level these vales determine how the family succeeds or fails in being a family. At the community level we generally have different sets of values that are learned or experienced through participating in the community. Communities require a different set of values that are often forced on us by others in the community. The way I treat others in the community is often quite different to the way I treat others in the family. If I go outside the normal expectations of what is acceptable in the community I am disciplined by the community. These community expectations determine the community values or value systems of the community. These values (positive or negative) are often defined by the culture, history or conventions accepted within the community. Each community has its own value systems, just as each family has its own value systems. While there may be some common elements in the value systems of each community or family, they are unique to that community or family. Just as families and communities use values as a means of conforming to a standard or social morm, societies also have a system of values that are used to provide some form of stability, as well rationalise it's activities within society. These social values are also determined by the collective members within society.

Values are also an important part of the institutions that define our families, communities, and the society that we participate in. Institutions are a part of the social construction of the community, and the society that we live in. Without the institutions and the values that are a part of those institutions, communities and societies can not function properly (see Dysfunctional communities).

I would also argue that ethics, morals and honour are based on a set of values that defines our relationship with ourselves and the others that we associate with.

Ethics:
I prefer to think of ethics as a principle or set of principles of cause and effect. While ethics are based in social values (the sanctity of human life, the respect of others property etc), the underlying principle is that by acting in a way that deprives another person of something that is valued by the person, I am creating a situation that is distressful to the person, which deprives the person of fulfilling his or her needs and living a fulfilled life. Another society may value the collective rather than the individual members. Property may be seen as being owned by the group rather that the individual. The principle then is that in order for the group or community to survive, all property belongs to the group or community. These ethics can not be rationalised or changed according to our mood, or the situation in which we find ourselves in. Who is to say which principle is right or wrong? It is the values that we live by, through our experiences and understanding of the world around us that determine which principle is right or wrong. Communities are generally a mixture of both principles, where we bring something to the community that is valued by the community. We share skills and resources and find value in being a part of the community. We also have our own skills and resources that we use to fulfill our own needs.

Morals:
I think that morals are a rationalisation of a set of values that can be reordered or prioritised according to the situation i.e.: I believe in the sanctity of human life except where my life is being threatened. Morals are used to set the agenda of the community or society. Society may say that it is not ok to do something at a personal level, but it is ok to do it on a social level. Societies legitimise a behaviour that may be against a person’s value by rationalising the new behaviour in a way that it is acceptable

Honour:
Honour is about a set of social values, rather those personal values. We talk about what is the honourable thing to do in a situation, or, worthy of honour, or dishonourable. Honour is all about what society would expect a person to do in a situation rather than what the person would do. The expressions "the honour of the family", or "in my ancestors honour" all declare something that is greater than the person, and whatever values the person has are less important than the honour of the family or society that the person is a part of. Honour is also a form of submission to the values of institutions that we live in. We may honour the diseased, elderly or some senior person as a sign of respect for the person and what the person represents. Honour is also a role model that is used to inspire others to achieve greater things that they may not even dream of.

The above shows thar there are actually two different sets of values that drive personal endeavours. There is a personal set which we use in our personal lives, and a social set that allow us to participate in society. The accepted social values that were used 40 to 50 years ago, are considered inappropriate and devaluing these days and reflect the changing social landscape that we live in today. The same thing happens in any social setting, where the use of terminology to describe a social group becomes outdated. Just as fashion reflects the era in which it was fashionable. Language also reflects the society in which it was used. Each new generation creates its own vocabulary. Think about the words that are used to describe "Disability". What meanings do we attach to these words today? What words were used 40 to 50 years ago to describe the same things? How will people in 40 to 50 years time describe the terminology we use today in describing people with high support needs? Will "disability" be a dirty word?

I like to think of social values as the glue that holds everything together. This glue may be strong (in the sense that everybody shares the same social values) in some areas and patchy in other areas. It is the common values of the community that provide the motivation for the members to see themselves as a part of that community. There is a value in being a part of the community. While new communities may have different roles, institutions and values to the communities 100 years ago, those values still provide the roles and institutions of the members of the community, and the roles and institutions of the community within society.



The relationships between Roles, Institutions, Values and members in the community.




A new approach to service delivery  (Top)
Scheerenberger, Goffman, Narje, Wolfsnsberger and others have written about the plight of people with intellectual disabilities. SRV was intended as a vehicle for social change, not the social change itself (Joe Osburn: An Overview of Social Role Valorization Theory). We are shown that these people have the same feelings and needs as ourselves, and therefore have the same rights in participating in valued relationships and activities i.e.: that they are just like you and me. While theory has been effective in providing a better quality of life for people with disability, institutions and institutionalisation is still here today in all parts of society (and will always be). Whether these are used for good or bad depends on the values of the culture of the society in which they are being used.

People with high support needs are also a minority group, and as a consequence, will have the same problems as other minority groups in respect to being assigned a devalued status.
We actually see exactly the same thing has happened today where a group of people (Muslims) are devalued as a group because of the behaviours of some extremists within the group. The same thing happened with the Germans, the Chinese, the Japanese, people that smoke, are over weight  etc. etc. etc. The same thing can happen to any group at any time.

While the intentions are good in as much as people with disability have the opportunity for a better life, there has also been some damage along the way. in as much as it has created a split within the human service profession as to the best approach to service delivery.
While theory was appropriate for the 60's - 90's, I feel that there needs to be some reassessment in the policy making process towards service delivery and outcomes (especially in the current economic climate).

The traditional methods of service delivery of social work and disability services seem to be opposed to each other:
… Social work looks at the community and the social barriers that people have in participating in a community.
… On the other hand, disability services looks at the personal barriers (their social roles) that people have in participating in a community.
(Connectedness and Citizenship: Redefining Social Integration)

There is a great deal written about N, social integration, empowerment, SRV etc. from the perspective of people that have a physical or intellectual disability (how the community should do this and that) and very little (if any) about providing a valued role for communities towards becoming empowered in providing for the needs of people that have a physical or intellectual disability. There is a huge resource out there about empowering communities, but for some reason best known to themselves, this resource has generally been ignored.

My feeling is that the current theory can not cope within the current social climate, A new approach is needed to meet the changing needs of communities within the current social framework. New technology means that the members are healthier and live longer today. The members are also getting older which means that pressures on existing services are increasing from year to year. Communities are also being redefined as each new technological innovation redefines our relationships with each other. I think we need a new perspective on our role in supporting people with disability in today's society. I also believe that the future of the human services lies in a balanced approach, where both paradigms complement and support each other in service delivery.

We should use the past as a reminder and a guide in the future towards building better communities. By redefining its role as a service to humanity, the service provider has a different perspective on its own role in promoting and supporting people that have a physical or intellectual disability and the role of communities in being a part of the process.

Just as communities of 2nd and 3rd generation unemployed in England and Europe have lost the skills to actively engage in a productive work culture (Their parents and others have not provided the necessary roles - getting up to go to work etc.), and therefore depend (are dependent) on social welfare, so too, communities have lost the skills (or never had them) in providing for the needs of people that have a physical or intellectual disability.

Originally families of people that have a physical or intellectual disability got together to support each other and develop social networks. Even though this was a small start, the parents still had ownership. Over a period of time the group evolved into a service provider. The parents lost ownership in providing for their needs. The current generation is growing up in a society where service providers provide direct intervention in the care of people with disability and the community supports these activities. They see the ads, read the literature. Their families and peers strengthen this culture and so it becomes the social norm.

Today we see all sorts of charities, benevolent societies, fundraising organisations, associations etc that support disadvantaged people in society. These support groups have a valued role in providing services to the wider community, or supporting people that do not have any personal support structures. These support groups also need wider community support in order to provide the services to their members. I know this because I get numerous phone calls and letters asking for support and donations. TV and the radio also remind me of the valuable services these groups provide in society. Unfortunately, I have limited resources, and there is no way that I can support all these groups. I have to make some decisions in who I can support. These decisions are generally based on the profile of the service. The higher the profile, the more likely I am inclined to support the service. There is always the problem that if there is to much exposure to the promotions of a service I may become desensitised to the service, or that there are others that support the service and I don't need to contribute. Another problem is that a person or group of people that most need support are the least likely to receive the support if the service does not have a high profile. While I may choose to support a service with a low profile, the chances of others supporting the service are less than if the service had a high profile.

As new technology and scientific understanding of various human conditions and ailements increases, new support groups are created to provide for the specalised needs of these groups. Today these services are specialised in and designed around a specific characteristic or need. These services generally have a scientific knowledge base as well as a set of interventions that are designed to provide the best outcomes for their members. These programs are built on the idea of evidence based practice. The more specialised the service is, the less involvement the wider community has in the activities of the service.

We as a human service need to build better communities, within the wider community, that actively support people that have a physical or intellectual disability, within the current social structure and government hierarchy (Law, policies etc.).

… Communities that have clearly defined roles/goals
… Communities that have shared beliefs, values, cultures (institutions).
… Communities that have clearly defined boundaries
… Communities that have ownership of their members
… Communities that provide valued roles for their members
… Communities that communicate effectively with their members
… Communities that can depend on their own skills/resources
… Communities that balance their own needs
… Communities that can share and draw on skills/resources where needed

A community that supports itself is an empowered community.

There are issues such as who is going to pay for wages and services, how are the resources going to be distributed, medical issues, legal issues etc.
This will not happen next year, or the year after, but it is something we need to work towards.



Review of literature:  (Top)

The literature that was reviewed was mainly that which was available on the internet in 2000.
While there is a huge resource, most of the material I was interested in was published in various journals that I was unable to access.

Topics of interest were:
SRV
Disability service groups and organisations
Community
Society
Roles
Institutions
People with disability/history
The service provider
Theory and service delivery
Government policy and practice

The literature was reviewed within a set of criteria:
1) What is the intention or perspective of the literature?

2) The setting/s:
What setting/s are described and how are they relevant?
What is the role of the setting/s?

3) The stakeholder/s:
What stakeholder/s are described and how are they relevant?
What is the role of the stakeholder/s?

4) How do the stakeholder/s relate to the setting/s?

I used Google as the search tool to find the relevant literature.
Of the material that I was able to access I found that the literature covered three broad categories:

1) Information about a particular service provided by a service provider:
A school or university has a service that is designed to help the user access some service or funding etc.
A description of the services provided by a disability service organisation or group.
Information on how the service user has benefited from the service.
Guidelines on gov policies and regulations and how to access gov funding
A list of available services and resources and how to access these services and resources.
Various strategies and useful information in developing/providing a service.

2) Information on research and findings that have been carried out:
Statistical information
Conclusions
Recommendations

3) Theory
Describing the observations or behaviours within a context in order to explain and predict outcomes that are consistent within the context.
To gain an understanding of what is happening.

Most of the literature was Information about a particular service provided by a service provider (1): there was some information on research and findings, but this was out of date. There was some information on theory, but this was very little and mostly out of date.

The conclusions below are based on literature accessed on the internet as well as my own experiences and does not take into account any material that is unpublished or more up to date.


1) Very little has been written about the role of the community in SRV

2) There has been very little written about the role of service organisations in SRV

3) I feel that there is a lack of understanding in the concept of roles, institutions and community, and how they relate to providing a better quality of life for people with high support needs and being a part of their community. Yes, the situation has improved dramatically in the last 20 years or so where people with high support needs have valued roles in their community, but I feel that this is more accidental than by design - that most successes are due to the person's own resources. There is very little literature available about the problems and failures when applying SRV or placing a person in a community setting. There may be literature available regarding this, but I was not able to find it.

4) There is little or no literature describing societies and communities that looked after people with high support needs.

5) The literature describing people with an intellectual disability historically has been biased in describing their situation as different to other groups in the community. When seen in the context of the available resources, skills and knowledge at the time, these people were treated the same as other groups (poor and destitute, sick, elderly, criminals etc.).

6) When developing strategies and programs towards inclusion in community activities for people with high support needs, the focus has been from the person with the disability and there seems to be very little community involvement in the process.

7) I feel that there is very little written about people with disability and significant others that manage to develop community networks and relationships through their own resources.

8) While there has been a great deal written about the institutions, buildings etc. within the context of people with disability, there is little written within the context of the community.



Footnotes:

(1) : The term "Culture" is used as a generalisation to include the way they were seen and treated by the society in which they lived, as well as the behaviours, attitudes, expectations, and values of the institution that looked after them (The Origin and Nature of Our Institutional Models).

(2) : "The literature on the relationship between size of residence and quality suggests that size is not a sufficient condition in itself and other variables must also be considered including staffing characteristics and patterns, and service processes such as supports for residents' development. PASSING takes these into account. A more extensive paper providing more detailed analysis on these issues and this evaluation is being prepared for publication by the author." (Cocks, E.  1998, Evaluating the Quality of Residential Services for People with Disabilities Using Program Analysis of Service Systems' Implementation of Normalization Goals (PASSING). (http://www.dinf.ne.jp/doc/english/asia/resource/z00ap/002/s00ap00207.html)"





(Peter Anderson 01 July 2008)
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