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. It's 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.


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.

Group/Organisation ------> living community
Group/Organisation ------> education community
Group/Organisation ------> employment community
Group/Organisation ------> 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.

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 institutions 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 cannot 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 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 full time 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.


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 cannot 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 ...

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)

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 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 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, neighbours, 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 centre, 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.

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 cannot 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 cannot because the car has broken down, then I am disadvantaged in that I cannot 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 cannot 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 cannot 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?

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. Unfortunately , because some of these groups have high complex needs, a community becomes specialised in, and focused on a particular characteristic, rather that the person as a whole, and as a result a person may not receive the support that is most appropriate to his/her needs.


A disability or a disadvantage  (Top)

Any definition that describes a person's 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 person's circumstances within society. This label describes a characteristic of the person. Unfortunately  a social label cannot 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,
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:

A lack of skills and resources in the community also means that the person may be seen as:

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.

Sometimes people are separated for their own good and in the best interests of 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 purple 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 metal 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 groups.




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 able 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 have to fight for their rights to participate in society. Just as the Muslims, the aged, the unemployed and other groups that do not share the same characteristics as the majority group, people with disability have to lobby for recognition of their status within society. They may have a legitimate 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 characteristic 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 cannot 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)


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:
(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.

What is a social consciousness?  (Top)

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?

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



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.

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

These principles could be described as the characteristics of 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 characteristics. 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 severely lacking, could be considered as a Dysfunctional community.


An institution is an important 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).

Characteristics of a Community of Learning, Ernest L. Boyer


The social systems within the community  (Top)

• Peer groups
• Cliques
• Networks
• Departments
• Hierarchies
• Factions
• Divisions
• Politics

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

Within a suburb we see all sorts of communities that share and compete for various resources. There are sporting, elderly, professional, administrative, service communities 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 becoming less isolated and more dependant on other communities. The expression "World Community" is becoming more relevant today where the actions on one community has greater effects on other communities. Climate change, free trade, oil prices etc. are examples of how communities need to find solutions 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 their 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.

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 cannot get to one) have no real way of get out of their situation.

Characteristics of minority groups  (Top)


Minority groups are about groups of people that see themselves, 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:

Characteristics of a Minority Group (Based on Richard T. Schaefer, Racial and Ethnic Groups 5 - 10 (1993))

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 compared to a Born again Christion or Muslim), 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  (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:

... 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, sharing, affection, relationships, etc...
... esteem needs - self-esteem, values, expectations and behaviours, etc...
... self-actualization needs - empowerment, realising potential, self-fulfillment.
(Adapted from Abraham Maslow's Hierarchy of Needs)

...External:

Personal needs  (Top)

There has been a great deal written about needs.

... Hierarchical:

... Motivational:

... Rights:

... 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 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 fulfilling 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

Within a suburb we see all sorts of communities that share and compete for various resources. There are sporting, elderly, professional, administrative, service communities 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 becoming less isolated and more dependant on other communities. The expression "World Community" is becoming more relevant today where the actions on one community has greater effects on other communities. Climate change, free trade, oil prices etc. are examples of how communities need to find solutions 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 their 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 in touch with the community and can create a feeling of importance within the members.


By providing valued roles for the community,
Where the community has:
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 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 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:

Devalued roles:

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 significance to contribute to the community, that person will be treated as different (assigned 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 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 consideration 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 negatively 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. 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 vehicle, 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.

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...

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...)

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:

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.


Above all else

People who do not have the skills and resources to build and maintain their networks are disadvantaged in that they do 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

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:

The above shows that there is a vast difference in a community service and a community network.


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

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.

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. It's 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:

Characteristics of a network:

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:


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:


As mentioned previously, 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 neighbour, 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 every time 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 specialised 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 cannot 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: 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

Skills and resources in the community

Where do I start?

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.

It's to hard

It did not work

The culture and institutions of the community

Community leadership

... 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.

The way in which the process was managed

Minority group

Guidelines for Supported Community Inclusion, the HealthRight Project

The role of the gatekeeper in the community  (Top)

The gatekeeper:


In all communities there is some form of leadership, hierarchical structure or mechanism that:

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:

"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:

Where a person does not have any skills or resources to bring to the community:

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 achieve the goals of the group. There is a sense of purpose and achievement in the project, All members benefit 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 specialised skills and resources to a community that 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 electricity, 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 than 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 mechanisms from congregate care to individualised care. While the settings may have changed, these mechanisms 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 variety of settings that most suits the person's needs, as well as the needs of the wider communities that these services are a part of. People with high support needs that cannot be supported within their community are still supported by a service that specialises in a particular area of care.

I feel that a time where people with high support needs 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 which we live, as well as government policy and practice. This does not mean that a community cannot be a part of the process. Who knows what will happen in the future. Will societies be the same as they are now in 100years’ 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 probably 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 ...

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.


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.


The Local Area Coordinator (LAC) ...


An empowered community  (Top)


An empowered community has the ability to effectively respond to the needs of its members.
This is NOT ...

Empowered communities ...
(See Understanding communities, Dysfunctional communities)

Having said that, communities are not perfect places. They are arrogant, dynamic, protective, stubborn, irrational, ungainly, bureaucratic, self-centered, 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


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:

Responsibilities:

We know from our own experience that the above rarely, if ever, happens. Most communities are reactive, rather than proactive. It's 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 ...
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:

Community relationships:

Competition:

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 socialise 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. Let's 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 centres, boarding houses etc...), but that does not mean that these facilities are not a part of a community.



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 behaviour 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 can't 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.


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:

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 their 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 rationalisation). 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 specialised 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 loses 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 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 specialised 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 behaviour 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 specialised in a particular area. A person (for example) may have an intellectual disability as well as Spina Bifida or cerebral palsy, and needs specialised 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 centre 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 accessible 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 indictment 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.

Pasquale De Muro and Pasquale Tridico argue that institutions are necessary in any human endeavour 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.

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)

An institution therefore refers to:

With regard to people with intellectual disabilities, the aged etc..., the terms institution and institutionalisation has been used to describe:

The problem is not the institution, but the way in which it is used.

It can then be seen that the institution (the building) and the institution (the "social construction") are three different things.

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 ...

This happens in all parts of society. We have an employment number, a tax number, a driver's 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.

Deinstitutionalisation could be described as a gaining of identity within the system.


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).


These 6 broad characteristics can be further broken down to describe a particular 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:

Other characteristics:

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)

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 service, organisation or business 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 check-up. 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 enrol in a course at school or uni and have to change my whole lifestyle to accomodate 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 behaviours 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. Whatever 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 person's 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 background, just as a canvas is the background that a picture is painted on. It's only when these institutions become more prominent in our life that problems occur.

The longer the time in institutional care, the more disruption occurs 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

A person may have to give up a significant amount of his/her previous life

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

Informal Institutions  (Top)

Informal Institutions allow the members or groups to function within the service, organisation or business. 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 service, organisation or business. 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...


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 ...

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 organisational policies and procedures.

Institutional care, then, is an ordered and specialised 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 outcomes of this care directly related to the service that provides the support. A prison, for example, has the same Institutions as a hospital, however it is immediately obvious that the outcomes of the prison and the hospital are different. Even within different prisons 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 ...

While there are these negative outcomes, the value of the Institution is positively valued by society. 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:

Other negative outcomes:

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:

Other positive outcomes:

Goffman describes four main characteristics of Institutional care as:

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.

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, cannot 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.



Types of institutions:

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

The above shows that the term "institutionalisation" both describes the 1) process, and 2) the outcomes of the process that are negatively valued by a person. When referring to an institution, there needs to be a new perspective in the way we approach 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)

• Right of asylum or political asylum
• Insane asylum or psychiatric hospital, a hospital specialising in the treatment of person's with mental illness- such as insanity
• Orphan asylum or orphanage, a building dedicated to caring for orphans
• Benevolent Asylum, 19th-century Australian building for housing the destitute
• Asylum seeker or refugee, a person seeking a safe place for protection and security

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 of 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.

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 epitomizes 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:

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:

The characteristics of a university (learning institution):

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, cannot 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 cannot 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 their 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.

"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 Osbourn: 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.


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).


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.


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 educational Institutions ...

The medical Institutions ...

The employment Institutions ...

The disability Institutions ...


Social perspectives of institutionalisation and deinstitutionalisation  (Top)

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 accustomed 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 violence 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 vehicle of change within that society. Today, China is is going through an identity crisis. Two cultures, the political/traditional culture and the financial/industrial 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 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, they are all valid.



The institutionalisation of deinstitutionalisation  (Top)

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 years 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 ...



The institutionalisation of community care (Top)

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 ...

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 cannot 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 cannot be supported in a community. The service provider may specialised 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)


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:
... Members are:


Service role models (Top)

Service role models are services that:

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  (Top)

Service delivery has five main functions:

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

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 its particular construct (social, professional or scientific), the amount of adaptation that is needed to suit 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 service provider may have a number of broad roles:

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.

Other less obvious or hidden roles may be:

Service providers are generally designed (and funded) to target a particular group (community role):

... 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:

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.


Models of service delivery  (Top)


Normalisation and Social Role Valorisation provide the underlying foundation that each model is built on.
(See Normalisation, Social Role Valorisation, the Least Restrictive Principle and Person Centered Planning)

How are we going to provide the service?

The way the service is provided depends on the person's needs:


The service provider may actively support, through direct intervention, disadvantaged people in the community.
Any service that supports people with high needs will require:

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.

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 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 its particular construct to suit the needs of the person (low support needs Vs high support needs), the amount of adaptation that is needed to suit all members and how the members are advantaged or disadvantaged through the adaptation.

Types of settings :

Just because the service setting may be in a school, the work place, recreation centre, special needs centre 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:

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.

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 specialised 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...


Types of service models  (Top)

Four broad types of service models that support people with high support needs could be described as:

(Click on image to view detail)

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 its 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 communities of the service provider  (Top)

A service provider generally contains a number of communities (parts, teams or groups of people) that specialised 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 specialty 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 provider  (Top)

Services providers have become specialised 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.

If the service provider cannot 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.

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 experiences, skills and resources, and support each other.

Society also groups people together .......

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 similar.

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 characteristics also allow me to identify others in society that are "hippys". The expressions "Pommie", "Negro", "Spastic" etc. were all legitimate labels that were used to describe a characteristic of the person. Over a period of time, these labels 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 originally, and have taken on new meanings today. This evolution of language is probably due to new generations trying to find their own identity in society (speculation only).

While the phenomenon of social labelling is neither positive or negative, 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 asylum seekers from oversees are labelled 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 desperate 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 evident 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 particular person or group positively, then the positive characteristics 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 characteristics 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 labels and roles that describe their circumstances. A person that has a mental illness, for example, may be accommodated 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 consideration 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 negatively 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 vehicle, 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).

Valorisation  (Top)

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 druggie, or possibly 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:

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 Centered Planning  (Top)

Normalisation:

Social Role Valorisation:

The Least Restrictive Principle:

Person Centered Planning:

Transitional Planning:


When using the N, SRV, LRP, PCP or TP in relocating a person to another setting or environment, we need to ask:

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 :

Roles :

Values :

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 organisation 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 Osbourn: An Overview of Social Role Valorization Theory, P.1- 4)

The implications of the above has meant that:

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 opposed 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 can't judge a book by its 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, cannot 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:

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-institutionalisation of 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 Osbourn: 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:

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 themselves. 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 cannot 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 its 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 centered), 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 planinng. 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 ..

Over protective:

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:

Conflict in models of care:

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:

May be seen as a nuisance or a troublemaker:
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:

Profiling:

Normalisation of practice

Leadership:

Bureaucracy:

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 its 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...)

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.


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.
 
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 cannot 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 caring and sharing, 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 its 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 glamor, 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 its outcomes for the members of the disability service provider, as well as the members of the wider community that it is a part of.

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.
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 self-worth (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 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:
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 "What's 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.

Anyway, 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 criticise the values of the management in their treatment of the workers in a factory, and SRV criticise 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:

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.

We talk about the new generation and what they may do with their inheritance.

... What will families be like in the future?

... How will they look after the needs of you and me in 30 or 40years’ 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 40years’ 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 its to late.

Maybe its 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 referred to as a family.

Have a defined set of roles, values, cultures, behaviours, expectations etc...
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 their 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 (neighbours, 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: within the wider community The person still has the opportunity to access an organisation or service (LAC and other Gov. depot's, TCCP, Activ, Swan taxies, IDEntity, HACC etc...) that specialised 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 anon-participatory sense: 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 its 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: 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 and 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: within the employment community

Local community services are a start to people becoming a valued resource in the community.
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 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 responds to an issue by creating a department to deal with the issue.

Universities and Institutions use historical and evidence based research related to the issue within that 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
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?


A home of my own  (Top)

Dreams are goals that we work towards. They give us a sense of direction and fulfillment. There is a feeling of satisfaction at having achieved our desires. Having control over one's life is a fundamental part of fulfilling those dreams. Having others to share those dreams with is also important. Unfortunately, the world rarely behaves the way we would like it to. Sometimes things happen that are out of our control and we just have to face the reality that some dreams will never happen. However, with the right support and skills anything is possible. The important thing is to keep an open mind and consider your options carefully. What may look good and inviting at first glance may have issues or problems that are not readily apparent.

The current "buzz" word around today is the idea of "Community Living". That we aspire to have our own place to live. Close to friends and amenities that are accessible. Other issues such as income, transport, medical or other special needs need to be taken into account. We need to look at our own needs and how those needs are going to be satisfied. We need to look at our own skills and resources as well as the skills and resources of each community we wish to be a part of.

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

Group/Organisation ------> education community
Group/Organisation ------> employment community
Group/Organisation ------> 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 ...

People with high support needs

A person or group may be disadvantaged in that there is no service (skills or resources) that supports their needs.
In remote areas where there are no services,
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:
A lack of skills and resources in the community also means that the person may be seen as:

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.

Sometimes people are separated for their own good and in the best interests of 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.

Click on image to view more

When providing the most appropriate care for people with high support needs ...


Personal reflections  (Top)

… 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:

The literature was reviewed within a set of criteria:

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:

2) Information on research and findings that have been carried out:

3) Theory

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:

(Top)