Our community - changing attitudes, empowering communities

Our community - changing attitudes, empowering communities
The concept of deinstitutionalisation as applied to today

Introduction

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. Each area or discipline within the human services has evolved into a science that looks for truths, rather than based in folklore or religious doctrine. These days, societies have become more accepting and provide a better standard of care. However, while we may accept a person in the social sense and there may be some sense of social responsibility, we generally leave that responsibility to someone else. In our own personal lives, we are more interested in our own needs, rather than the needs of others. Its only where a person has a personal interest or investment in the needs of others he/she may become more actively engaged in that person or group. While I may respect the person in a social sense, the way I treat the person in the personal sense may be quite different. The expressions "society", "social" and "community" have often been used to mean the same things. A social group describes the common characteristicts 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 socity to another. As a result we see lots of communities that are a part of the same social group. If someone wants to build a nuclear reactor in a suburb, I would be more inclined to protest if it was planned to be built in my suburb. If the nuclear reactor became a social issue, there would be a great deal of discussion about the project.

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

We see Disability being supported by the disability sectior, 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 disability, it is certinally 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 probally 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.

Current policy within the disability 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, events etc. are accessible to all members of 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 disability services is to fit people with disability into a community.
This strategy is effective in providing local community supports for people with low to medium support needs.

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

The above shows that people with high support needs 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.

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

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

The above is based on my own experience. A person I know ("A") was living in his own unit in a retiremnent 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 ferinds 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 meical care. Instead of providing fulltime medical care within the unit he was living in, "A" was placed in a nursing home in a restricted section where the outside doors are locked.

"A" was presenting multiple conditions ...

... has a lifetime lease at a retirement village.
... has engaged a person with Power Of Atterney to manage his fincancial affairs.

... he is elderliy >80 years old.
... he has the beginnings of deminta.
... his wife had passed away a few years ago.
... he had a stroke.
... needs 24 hr care.

The nursing home ...

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

The outcomes ,,,

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

Generally, people with a mental illness, or have a severe physical, disability or condition (high support needs) are well looked after today. The times have changed mainly through the principles SRV. These people (as a social group) are probably better looked after than other groups such as the aged. the poor etc. (this is speculation based on empirical observations). Although there are still some communities, groups etc. that may treat people with disability as 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. If fact, these groups were much better off in the "institutional care" as described by Goffman, Narje, Wolfsnsberger and others, than they would have been on the streets without these building and institutions. The problems were more to do with the setting (available resources), management, culture, and the expectations, that they lived in, rather than the fact that they were institutionalised. Institutions are a part of our everyday lives: in the family, cultural and ethnic groups, religion, sport and education etc.

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

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

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

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

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

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