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

Community research project
Disability Services, disability and community

Institutionalisation and deinstitutionalisation are used to describe the situation that people with high support needs live in, and the process of enabling these people to live more normal lives in society.
Institutionalisation could be described as a loss of identity within society.
Deinstitutionalisation could be described as a gaining of identity within society.

Scheerenberger (1), Goffman (2, 3), Narje (4), Wolfsnsberger (5) and others have written about the plight of people with intellectual disabilities. Social Role Valorisation was intended as a vehicle for social change (6). We are shown that these people have the same feelings and needs as ourselves, and therefore have the same rights in participating in valued relationships and activities i.e.: that they are just like you and I (7, 8, 9, 10, 11).


The problem:
There is a growing amount of literature available on the internet that suggests that deinstitutionaslisation is not working as well as it was intended. The trend in some countries is the reinstitutionaslisation of people with intellectual disability or mental illness because of a lack of community skills and resources. (12, 13, 15, 16, 17, 18, 19, 20, 21, 22, 23)

“There is overwhelming evidence that people in the criminal justice system
have considerably increased mental health needs and that these needs are
extensively neglected in terms of developed and unified mental health
service strategies. Comparisons with the general community reveal that a
disproportionately small amount of our existing mental health resources,
already inadequate to meet community needs, are directed at meeting the
needs of offenders and those placed on remand in the jail system.” (22)



Research question:
How can a community become empowered in providing for the needs of people with high support needs?



The Project:
The project is designed to explore the various ways a community can become more actively engaged (empowered) in providing for people that have high support needs in their community (providing valued roles for the community) (24, 25, 26, 27, 28).


Observations and assumptions:
The traditional methods of service delivery of social work and disability services seem to be opposed to each other:

… Social work looks at the community and the social barriers that people have in participating in the community.
… On the other hand, disability services looks at the personal barriers that people have in participating in the community (27).

The concept of de-institutionalisation and inclusion has achieved very little in regard to people with high support needs becoming valued as a part of their own community. Yes, some of these people do live and work in the community, and have valued roles within the community, but are they a part of their community, and more importantly … Do they feel that they are a part of their community and are they valued as a part of their community? Does the community have the skills and resources to fulfil their needs?

The growing economy. Growing population, getting older. New technology means people are living longer (29).

Lack of community resources
A smaller work force to draw on
Higher cost for goods and services
Increasing population pressures on existing services
The existing resources are being stretched to the max

The community
Participates in the activities of the organisation
Becomes dependent on the organisation in providing for the needs of people that have a severe physical or intellectual disability.
Learned helplessness etc

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.

The research has been done in information available on the internet, as well as my own experiences. There is also an assumption that community attitudes are determined by the type and severity of the disability of the person, and the impact of the person in the lives of the individuals within each community (17). There is also the assumption that there are no current studies available that support or contradict this view.

Any dialogue in the discourse of people with high support needs and the community, needs to be positioned in the context of the person and the community. What are the needs of the person ? What are the needs of the community? How can the needs of the person be balanced with the needs of the community ?

By looking at disability as needs based, rather than located in the person or society, we can find strategies to fulfil those needs within each community that the person participates in.

“The rise of the social model of disability has de-emphasised intervention to help
people gain skills and independence. Staff training emphasises anti-discriminatory
practice and the promotion of choice and opportunity for people who can express
clear intentions – not the skilled professional support required to enable people with
significant intellectual disabilities to continue to grow and develop throughout their
lives.
The implications of these broad changes in context are important.
Deinstitutionalisation and community living has very largely been sustained, in the
policy arena, through the promotion of a particular philosophy. Great changes have
been carried through on the assumption that community-based services are better
than the institutions. This is unlikely to be enough in a harsher, more sceptical policy
climate. The pursuit of more staff, smaller services, tenancy status rather than group
homes, in the absence of unequivocal evidence that these things make a difference, is
unlikely to carry sway. If community services continue to provide very variable results,
and overall if they are seen to be not much better than sanitised institutions, then they
will lose out in the policy marketplace.” (26, P.13)



Community is used to refer to each community, living, recreational, education or employment, that the person participates in, or would like the opportunity to participate in.


References:

(1) Scheerenberger R. C., 1976, Deinstitutionalization and institutional reform

(2) Goffman, sighted in Total Institutions: K. Joans & A.J. Fowles - In Understanding health and social care By Margaret Allott, Martin Robb, 1998, Open University P.70

(3) The concept of Goffman's total institution and characteristics of homes for older people

(4) Robert J. F., Raymond A. L., 1999, A quarter-century of normalization and social role valorization.

(5) Wolfsnsberger W., 1969, The Origin and Nature of Our Institutional Models

(6) Joe O., An Overview of Social Role Valorization Theory, P.1- 4

(7) The Individual and Social Models of Disability

(8) Jacques Pelletier, Social Enterprises: an employment alternative for disabled adults

(9) Cocks, E., 1998, Evaluating the Quality of Residential Services for People with Disabilities Using Program Analysis of Service Systems' Implementation of Normalization Goals (PASSING)

(10) Sharyn Pacey, 2007, Changing Hearts and Minds, Community Resource Unit Inc. SEPTEMBER ISSUE 39

(11) Lennox Castle Hospital

(12) Brian Burdekin, September 15 1993, Democracy and the Rule of Law

(13) Goggin G., Newell C., 2005, Disability in Australia: Exposing a Social Apartheid, P.120

(14) Valuing the person or valuing the role? Critique of social role valorization theory

(15) Deinstitutionalisation and community living – outcomes and costs 20 Feb 2008 ... Deinstitutionalisation and community living – outcomes and costs: report of a European Study. Volume 1: executive summary

(16) Deinstitutionalisation in Europe_2008.pdf

(17) HOW DOES THE COMMUNITY CARE? PUBLIC ATTITUDES TO COMMUNITY CARE IN SCOTLAND, 2002 > December

(18) Sheila Manning, PUBLIC ATTITUDES TOWARDS PROVIDING COMMUNITY CARE
In Reassessing community care by Nigel Malin, 1987, Chapter Fourteen

(19) Deinstitutionalisation: an unrealised desire

(20) Torn Shakespeare, Nicholas Watson, 2001, The social model of disability: an outdated ideology, Volume: 2, Page: 9 - 28

(21) Quality of Life and Quality of Service Relationships: Experiences of People with Disabilities

(22) Dale Kift, 2005, Probation and Community Corrections Officers’, Association Incorporated (PACCOA), Submission to the Senate Select Committee on Mental Health (Australia)

(23) Case Studies in Deinstitutionalisation: Implementing Supported Housing Programs in Two Australian States (August 2008)

(24) John O'Brien, One Day at a Time: Changing a System to Realize a Dream

(25) COMMUNITY, PLACE AND BUILDINGS - The Role of Community Facilities in Developing Community Spirit

(26) Deinstitutionalisation and community living: progress, problems and priorities (2006)

(27) Norma C. Ware, Ph.D., Kim Hopper, Ph.D., Toni Tugenberg, M.Ed., L.I.C.S.W., Barbara Dickey, Ph.D. and Daniel Fisher, M.D., Ph.D. Article: Connectedness and Citizenship: Redefining Social Integration, Psychiatr Serv 58:469-474, April 2007, doi: 10.1176/appi.ps.58.4.469, © 2007 American Psychiatric Association

(28) The theory and practice of community participation: engagement the first step

(29) Australian Government: (August 2008) Disability in Australia: trends in prevalence, education, employment and community living

(30) Carling P. J., 1994. Return to community: building support systems for people with psychiatric, Ch5, Strategies for Change, P.129

(31) Schuler, Douglas. 1996, New Community Networks: Wired for Change. Addison-Wesley Publishing Company, Massachusetts

(32) Lee J. Cary, 1983, Community Development As a Process

(33) Community Link And Network (CLAN WA)




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