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Disability services - a personal experience

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.

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.

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.

Peter Anderson