The background paper

Proposal For Getting A Life Intentional Community Housing Project

(This was written in about 2008 when the website was first created. It is archival but shaped our thinking in the early days.)

“Secure housing and tenancy for most people with a disability and their families is the cornerstone to minimising the impact of the disability and maximising personal outcomes. The majority of people with a disability and their families are highly dependent on access to government provided housing. Whilst access to affordable housing is an issue for all disadvantaged groups many people with a disability are doubly burdened with additional care and support costs.” (Housing for People with a Disability, Discussion Paper for the ACT Minister’s Housing Advisory Forum, February 2006, p 8)

1. Background

Getting a Life Family Governed Project was formed in 2005 by three Canberra families who each have a son with a disability.

The families have been working to create lives for their sons since the inception of Getting a Life.

“Innovative interventions to help families of persons with disabilities offer great promise as a way to promote well-being, strengthen families and alleviate suffering.” (Singer and Powers, p 1)

Getting a Life was the first family governed project totally initiated and developed by families to be established in the ACT. As stated above, it has been a powerful and effective innovative intervention in the lives of our sons.

It is time to develop the next stage of the project which is accommodation.

2. Introduction

“ The major issues facing parents, services and governments are how to plan for transition from parental care and who or what will substitute for the roles previously fulfilled by parents.” (Bigby, C; p ix)

The transfer of care from the parents to others is inevitable. Parents age and die. Our sons will need support for the whole of their lives. We know that it is not governments, bureaucracies, policies, procedures, discrimination acts or the legal system that will ensure our sons will have a rich and safe life. These things help. But ultimately it is people who keep people safe. It is relationships that make the difference between an impoverished life on the margins of society and a life that more closely resembles the lives of our other sons.

“Adequate planning…can avert the crisis of an ill-prepared transition from parental care, ensure longer term security and stability of the people with a disability and assist in forecasting future service demands.” (Bigby, C; p14)

Getting a Life is planning now so that our sons have a quality home with security of tenure, an intentional community, the necessary paid support and the potential of unpaid supports through relationships and networks which develop through this accommodation model.

3. The Model

Our model is a rental housing co-operative in which the people with a disability have their homes first and others are invited to apply. This has been done before as documented in the paper ‘Tenants, Housing and Participation, Initial Evaluation of the Camberwell Independent Living Association’.

They describe a Rental Housing Co-operative as a form of public housing which is managed and controlled by the tenants. The tenants have access to independent, high quality, low-cost accommodation with security of tenure.

Three of the units would be designed specifically for our sons and the other twelve could be a mix of styles. The design would foster the development of ‘community capacity’ within the model.

Community Capacity builds community resilience; it is about a sense of community as our first priority, instead of a sense of self. It is about the interconnectedness, interaction and integration of people.

4. Support

“The ACT Government acknowledges that for many people with a disability the issue of housing cannot be separated from the issue of their support arrangements.” (Housing for People with a Disability, Discussion Paper, February 2006, p 8)

Ben and Jackson have high support needs. Daniel has moderate support needs. The cost of support is high and each of our sons will need paid support to a greater or lesser degree. This model will allow some sharing of formal paid support which will reduce costs.

Support will be provided in three ways:

I. Paid support

Ben, Jackson and Daniel will all need some paid support. The funding for this will be provided by the ACT Government through Individual Support Packages (ISPs).

II. Unpaid support through housemates

The families will design co-operative living arrangements with non-disabled peers. There will be individual negotiations around payment of rent, responsibilities of the housemate and other financial matters eg will the housemate live rent-free or be paid a small stipend in exchange for some guaranteed hours of presence or assistance with a small range of daily tasks?

There are many examples both in Australia and overseas where this works and has worked for many years. Sally has visited such homes in Brisbane and in Syracuse, NY.

III. Informal support and safeguarding through other residents

“Informal care provided by family, friends or neighbours is care provided on the basis of affective and particularistic ties that link particular individuals…care provided on the basis of personal ties between individuals.” (Bigby, C; p 31)

“We are beginning to discover more and more that the success of inclusion…in the long run depends on the strength of their informal networks.” (Reinders, p 23)

The intentional community created will promote the development of informal networks. These rely on people caring about each other. All too often, people with disabilities are expected to live with their “own kind” meaning with other people with a disability, but Getting a Life believes that people with disabilities need to live with their own “human kind”. Our sons are people first and so should live with other people, not with a narrowly defined group of people who are seen as disabled first.

People with disabilities are typically given little or no choice about where they live or who they live with. We want to reverse the status quo and give our sons the authority to chose their home first and then decide who will share that internal and external space with them.

The people they choose will have a strong belief in social justice and inclusion so that our sons have the best chance of being surrounded by people who will support and safeguard them informally; not because they are paid to do it but simply because they care about others and see the intrinsic dignity and worth of all humans.

Summary

The Getting a Life Family Governed Project acts for and on behalf of Ben Pattrick, Daniel Conaughton and Jackson West. These are three fine young men who have a right to the things in life that our other sons have. (We have nine sons between us). Just because they each have a disability does not mean that they cannot have a similar life to the lives of our other sons. Their families have worked, work now and will work relentlessly and forever to ensure that these young men have meaningful work, chosen leisure activities, warm and caring relationships, relevant paid and unpaid support and an inclusive, rich and interesting life in a community that is interested in them and cares about them.

A key element to this envisioned life is that each young man has a home of his own, that each of them holds the front door key and decides where they will live, who will be invited into their home and who will live with them. A supportive, caring and active nuclear community will be build around them. This does not take the place of family, some paid supports or the elements listed in the above paragraph, but rather adds an extra dimension to their rich and varied lives.

This proposal is all about them and their need for and their right to have that life and that home.

Bibliography

1. Advocacy for Inclusion Position Paper; Accommodation and People who have a Disability: Towards Approaches that are Flexible and Responsive to Individual Need

2. Bigby, C; Moving On Without Parents; MacLennon & Petty Pty Ltd, NSW, 2000

3. Building Community Capacity: removing the Barriers, Conference Proceedings, Social Options Australia, Adelaide, 2005

4. Co-operative Housing Kit, Shelter Victoria 1980

5. Evaluation of the Camberwell Independent Living Association (a Rental Housing Co-operative), 1983

6. FaCSIA, Australian Government; Planning for the Future people with disability; Commonwealth of Australia, 2006

7. Housing for People with a Disability, Discussion Paper Discussion Paper prepared for the ACT Minister’s Housing Advisory Forum, February 2006, February 2006

8. Fratangelo, P; Onley M; Lehr, S; One Person at a Time; Training Resource Network Inc, Florida, 2001

9. Klees, J; We Come Bearing Gifts, The Story of Deohaeko Support Network; PSD Consultants, Scarborough, 1996

10. Peach Housing Co-operative, Our Story, SA, 2005

11. Reinders; The Good Life for People with Intellectual Disabilities, 1999

12. Singer, G and Powers, L (Ed); Families, Disability and Empowerment; Paul H Brookes Publishing Co, USA, 1993

13. Tenants, Housing and Participation, Initial Evaluation of the Camberwell Independent Living Association (a Rental Housing Co-operative, 1983

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