Deinstitutionalisation ! Understanding communities ! Dysfunctional communities ! Building better communities
  Understanding disability service organisations ! An alternative model ! Community research ! Community survey



Full Circle: The future of services that support people with high support needs

Social Role Valorisation (SRV)
Deinstitutionalisation
Disability services
Disability and community


The future of the service provider:
Services providers have become specalised 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.

Saturation point:
Any service or organisation that grows above a certain size (saturation point : that the organisation can no longer function as an organisation, but rather as a collection of mini organisations) is dependent on it's departments in fulfilling their own roles within the organisation. These departments become specialised in providing a specific function within the organisation. Just as a person becomes specialised in a specific task, and the person looses the skills in other related tasks, the departments within the organisation may become so specialised within a role, that other skills that are important to the needs (overall health) of the organisation, become less important than the needs of the department. Each department may have budgets, performance criteria, targets, assessment programs etc. that determine the efficiency of the department, which means that the department becomes more concerned with it's own performance rather than the overall health of the organisation. Communication, cooperation etc. between departments becomes slow, uncoordinated and sometimes nonexistent (have you ever experienced the frustration of trying to deal with the government, a large bank, internet service provider or any large multi national organisation).

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.

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:
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?

Lennox Castle Hospital
Lennox Castle Hospital was designed as a twentieth century service provider that provided for the needs for 1200+ men and women.

Origionally a hospital
Was ahead of its time
Supported a large number of people with an intellectual disability

Roles:
To provide for the needs of people with an intellectual disability
Provide a secure setting.
To protect society from this group.

Characteristics:
Self contained
Strict rules and regulations
Division of groups ... staff/residents, male/female

Positive outcomes:
Residents basic needs are looked after.
Residents have the opportunuty to socialise with each other.

Negative outcomes:
Low expectations of the residents.
Large group of people seperated from the wider community.

Shift in public and Gov. oppinions, values and policy towards this group has ment that the residents of the hospital were moved to other places.
The life of institutional living is described through the experiences of a former resident (Howard Mitchell) as well as others that were living there.
"How do we make sense of what we saw? The video tells the story of the hospital in dramatic tones: we hear about a riot, escapes, punishment and drug treatment regimes. But we also hear about football matches, dances and friendships. Even so, they are only part of the story of 60 years and many hundreds of people's lives. We saw several volumes of detailed records. What can be learnt from so much information? How can Howard Mitchell begin to organise all these facts and accounts?" (Lennox Castle Hospital)

In order to support 1200+ men and women today the facility would need:
Assuming a direct support staff/client ratio of 1/4, there would need to be 300 primary support staff.
Management and other support staff would probably be 50-100.
Which means that the facility would need to support 1600-1800 people minimum, which is a lot of people.
Assuming a total staff/client ratio of 1/1.83, there would need to be app 660 total staff + 1200 residents = app 1860 staff & clients.

If you feel inclined to watch the videos that are at the site (highly recommended) some other interesting questions may come to mind:
... What are the values, attitudes and expectations of the community towards people with an intellectual disability as described in the video?
... What are the values, attitudes and expectations of your community towards people with an intellectual disability today?
... What are the characteristics of institutional life as described in the video?
... What are the similarities and differences between the characteristics of institutional life as described in the video and the characteristics of life in a service today?
... What are the outcomes of institutional life as described in the video?
... What are the similarities and differences between the outcomes of institutional life as described in the video and the outcomes of life in a service today?

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.




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.
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.