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The institutionalisation of deinstitutionalisation


Institutional (or social) care

Full circle

"Institutionalised care for people with disability is alive and well in Western Australia"

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 include people with disability within a community.
This strategy is effective in providing local community supports for people with low to medium support needs.

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

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

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

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

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

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

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

Sometimes people are separated for their own good and in the best interests of their community ...
they are a harm to themselves
they are a harm to others in their community
The above can happen in any place at any time where a community does not have the skills and resources to look after the needs of its members.

Institutional (or social) care
Institutional (or social) care is inportant in, and integral to, the way a community functions. These institutions (Organisations and services) complement communities in allowing communities to better manage their own needs, Hospitals, schools and universities, nursing homes, churches etc all provide valued roles in society, However these institutions are used is determined by the values, cultures etc (institutions) of the society in which they are used.

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)

Full circle
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.

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