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Crisis point

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

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 New equipment and technology replaces old and outdated equipment and technology.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

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

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

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

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

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

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

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

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

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

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

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

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

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