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Understanding disability service organisations

Social Role Valorisation
Deinstitutionalisation
Disability services
Disability and community

Disability services role models
Disability services - three models of service delivery
The role of the service provider in the community
How does the community care?


Understanding disability service organisations
Disability service organisations and the hidden agenda
The future of the service provicer
Saturation point
Full circle
Lennox Castle Hospital



A disability service organisation refers to any service that is provided by a service group or organisation that specialises in looking after the needs of people with disability. The organisation may specialise in a particular area of care (accommodation, recreation, education or employment), or provide services that include all aspects of a person’s life. Organisations are generally funded by the Disability Services Commission (DSC) and contracted to provide the service within the policies of the DSC. Various government policies also legatimise the roles of these organisations within society. The disability service sector is also an industry in it's own right.

Disability services provide a valued role in society today. They provide the skills and resources that are not available within the wider community, that support a group of people with high support needs. The service is a community in its own right in providing the staff, volunteers, living, employment, educational or recreational activities within society. The networks, relationships and shared experiences of the members provide the community of the service with a sense of purpose and direction within society. The service also provides the knowledge base that supports a particular group in society.

The service evolved according to a set of standards and principles designed to support people with disability.
The service’s role:
… to actively promote the needs of people with disability through the principles of normalisation, social integration, empowerment and social role valorisation,
to actively support, through direct intervention (accommodation, recreation, education or employment), people with disability in a community.

Disability services also provide other valued roles in society ...
... provides employment within the sector.
... promotes the growth of other support services, such as transport, catering, laundry, specalised equipment etc.
... raises awareness of the situation of the group that is supported by the service.

By fulfilling an active role above, the organisation also takes on a certain amount of ownership (in providing for the needs of people with disability), and as a consequence, the community sees its role as a passive and supportive. The higher the profile of the organisation, the higher the expectations of the community in the organisation in fulfilling its role. The community has not had an opportunity to develop the necessary skills for an active role, and as a result a co-dependent relationship is unintentionally created between the people with disability <> organisation <> community.

Organisation

Living Recreation Education Work Volunteer Staff
Transport
TCCP
Activ
Id entity WA
Nulsen Haven

Stepping Stones
VIP
Riding for the disabled

CLAN Mirrabooka
Blue Skies ?

AAA agency
Swan taxies
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Organisations (not inclusive) and the services that are provided.



Organisations that provide services for people with disability can be seen as communities within the broader community.
These organisations sometimes provide duplicate services etc.



Disability service organisations and the hidden agenda:  (Top)

Disability service organisations generaly specialise in a particular area of disability:
... provide an area of knowledge within that area
... provide skills and resources within that area
... provide a service within that area
... provide employment

The organisation has two broad functions:
1) Supporting and maintaining the needs of the clients
2) Supporting and maintaining the needs of the organisation

Sometimes the needs of the organisation become greater that the need of the clients supported by the organisation:
… income, The organisation cannot function with out donations, Gov funding, etc.
… qualified staff, Lack of competent staff means that the clients are not getting the proper support, etc.
… maintenance, The organisation needs to maintain the facilities, equipment to a standard that is required by the service uses (staff and clients) to maintain service delivery.
… management, the management hierarchy increases to cope with its own needs.
Etc.

Other factors also impact on the organisation’s ability to provide for the needs of its clients.
… current workforce: the organisation is limited to the available workforce to draw on.
… costs of goods and services (electricity, petrol, external labour costs etc) all impact on the organisation’s ability to function.
… reliance on the community to support the organisation through Gov funding, donations etc.
… increasing community demand for services also put a strain on the ability of the organisation to provide the proper support.
services are designed to target specific groups that fulfil the criteria of the service (specialised). This means that where there are no services available for the person, that person does not get the support needed.
… organisations also have a limited capacity, which means that people that qualify for the service cannot receive the service if there is no room. People who share a characteristic that is rare in the community often become marginalised because of a lack of services or resources to support their needs. This is a problem in country areas where resources are limited.
Etc.
 
As the organisation grows, the demands of the organisation increase and put an increasing strain on existing internal and external resources to the point where the organisation cannot provide the care needed in supporting its client base.

It is in the interests of the organisation to raise awareness of it's activities within the community. Organisations actively engage in supporting and promoting the needs of people with disability in the wider community. Generally, the community is approached by the organisation to support the activities of the organisation through:
… advertising their various development programs and promoting people with disability generally.
… volunteer programs.
… sponsorship programs through business and company support.
… community events organised by the organisation.

The higher the profile of the organisation:
the more likely it is to receive funds:
has an advantage where there may be two or three organisations providing similar services (accommodation, work, recreation etc).
has an advantage in a competitive market with other organisations for staff, donations, sponsorships, research etc
… the more dependant the community is, in the organisation fulfilling it's role.
… the less likely the community is, in becoming more actively involved in direct intervention in supporting people with high support needs.

The future of the service provicer:  (Top)
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:  (Top)
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:  (Top)

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  (Top)
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 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.


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