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Alert!
Backward steps in rights to community living for people with disability
This special issue of e-bulletin addresses recent regressive steps in the long campaign against the institutionalisation of people with disability. PWD is extremely concerned that the right for people with disability to live and be fully included in the community is being threatened at both the NSW and Commonwealth levels.
These recent regressive steps include:
- The derailment of devolution plans for 16 residents of the Weemala centre at the Royal Rehabilitation Centre Sydney (RRCS)
The devolution plans for Weemala enable the current 41 residents to be relocated and appropriately supported in a range of community living options of their choice. These residents either receive funding through the Department of Ageing, Disability and Home Care (DADHC) or NSW Health. While all those funded by DADHC and about half those funded by NSW Health will continue to be assisted to live in a range of community living options, 16 residents funded by NSW Health have had this opportunity removed.
The derailment of these plans first occurred at a City of Ryde Council meeting held on 7 August, where redevelopment plans for RRCS were rejected. One of the main reasons for this rejection was concerns that the redevelopment plans did not provide on-site accommodation for 16 residents of Weemala with complex, high medical support needs. These residents, it was argued, would not be able to live in the community. Following this meeting, the NSW Minister for Planning, the Hon. Frank Sartor MP, overturned the Council’s decision.
However an emotive article in the Sydney Morning Herald (13 August 2007) claimed that the ‘rights’ of residents to remain at Weemala were threatened by plans to relocate them into community living settings. There were subsequent interventions by Minister Sartor and the Prime Minister, the Hon. John Howard MP, which led to a decision on 14 August to construct a purpose built facility on the site of RRCS for residents of Weemala with complex, high medical support needs.
PWD is appalled that these 16 residents will no longer be afforded their right to live in the community as had been promised by the NSW Government in 1995, but will be kept on-site in an institutional living environment.
Full account of this derailment.
- The Commonwealth Government announcement that it would provide 1750 supported accommodation places in 175 new facilities for people with disability aged over 40 with parent carers aged 65 years or more
The supported accommodation proposal is part of a new Disability Assistance Package that was announced by the Commonwealth Government on 28 June 2007.
While the Package contains a number of components, PWD is primarily concerned with the supported accommodation proposal as 1750 new places in 175 new facilities suggests that there will be an average of ten beds in each facility.
No details of the supported accommodation program design and implementation were provided with this announcement, and the Department of Families, Community Services and Indigenous Affairs (FACSIA) is currently preparing a discussion paper to inform consultation on this issue. However, PWD is concerned that this proposal could mean a return to institutional living arrangements for people with disability.
While measures to address the crisis in the lack of supported accommodation for adults with disability living with their ageing parents are critical, PWD is opposed to regressive measures that isolate people with disability in institutions.
More details.
Our position
PWD believes that all people with disability have the same right as everyone else to live and be fully included in the community, and to be provided with the services and supports that they need to allow them to enjoy this right.
We believe that congregate care living arrangements or institutionalisation, and the redevelopment of institutions, undermines the rights of people with disability to live and be fully included in the community.
PWD has always held this position. As an organisation, we have strong roots in the deinstitutionalisation movement, as many of our founding members lived in and are fervently opposed to institutions, including Weemala. More information on PWD’s history.
We argue that institutional living arrangements, such as those now proposed for construction at the RRCS site, are contrary to the Principles and applications of principles, and the Objects of the Disability Services Act, 1993 (NSW).
We also argue that these arrangements are counter to the UN Convention on the
Rights of Persons with Disabilities (CRPD), which was signed by the Australian Government on 30 March 2007. CRPD Article 19, Living independently and being included in the community states:
States Parties to this Convention recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
Erosion of rights
PWD is extremely concerned that the recent regressive steps, outlined in this e-bulletin, signal a significant backwards philosophical shift that condones a return to institutional living arrangements for people with disability.
In 1998, the then NSW Minister for Community Services, the Hon. Faye Lo Po’, promised that there would be no people with disability living in institutional care by 2008. In the year 2000, the government re-announced its committment to close all institutions by 2010. Plans for devolution of institutions were developed, and many people with disability living in NSW institutions have now been relocated to community living settings.
However, the promise of deinstitutionalisation was broken with the May 2006 release of the NSW Government’s ten-year plan, Stronger Together - A new direction for disability services in NSW: 2006-2016. While there are many positive and welcome initiatives in Stronger Together, prior devolution plans for three institutions - Peat Island, Grosvenor and Lachlan – are now redevelopment plans. Ten-bed units for adults with complex health care needs are being developed at Grosvenor, with redevelopment plans for Peat Island and Lachlan to include purpose built facilities on-site for current residents of these institutions.
PWD has also recently become aware of a decision by DADHC to provide funding to the House With No Steps to open a 10-bed institution for people with disability, described as 'new clustered villas', on the mid-North Coast.
PWD views the latest NSW Government support for new facilities to be built for 16 residents of Weemala as further evidence that the rights of people with disability to community living in NSW are being undermined. In addition, we are concerned that there appears to be no opposition to this support from the NSW Minister for Disability Services, the Hon. Kristina Keneally. We would expect that Minister Keneally would seek to ensure that all people with disability are provided with the same opportunity to live as part of the community; while residents of Weemala funded by DADHC will have their rights to community living realised, 16 of those funded by NSW Health will have theirs diminished.
At the Commonwealth level, the supported accommodation proposal announced as part of the Disability Assistance Package, which will provide 1750 new supported accommodation places in 175 new facilities, appears to effectively mean the provision of congregate care accommodation facilities for people with disability.
The Prime Minister’s intervention into the devolution of Weemala and his support for the construction of purpose built facilities on-site for residents of Weemala adds weight to our concerns. While FACSIA intends to consult with stakeholders to inform program design and implementation, there is a significant Commonwealth Government view that institutional accommodation for people with disability is acceptable.
PWD is concerned that the Prime Minister’s support may also signal to State and Territory governments that efforts to devolve institutions in Australia and develop appropriate supported community living models are no longer necessary.
Our response
PWD continues to advocate for the right of people with disability to live and be fully included in the community.
Through meetings and letters, we have been raising our concerns about the redevelopment of institutions in NSW, and decisions to fund 'new clustered villas' with Minister Keneally and DADHC.
In collaboration with the Australian Federation of Disability Organisations (AFDO) and the Australian Council for Social Service (ACOSS), we have sent a letter to the Commonwealth Minister for Families, Community Services and Indigenous Affairs, the Hon. Mal Brough, raising our concerns about the congregate care supported accommodation proposals in the Disability Assistance Package. We have also written to the Prime Minister and raised concerns about this issue with other Commonwealth MPs.
We have been actively engaged in advocating for the rights of people with disability during the recent decisions regarding Weemala. On 7 August, a PWD representative attended the City of Ryde Council meeting, which was highly vocal and contentious, to present our views.
On 13 August, we wrote a Letter to the Editor of the Sydney Morning Herald to counteract the views expressed in that day’s article, 'Turfed out of the only home they know'. We are disappointed that our letter did not appear, while three letters supporting the Sydney Morning Herald did appear. On 15 August we issued a media release, 'Clocks turned back on accommodation reforms for people with disability'.
We have also written letters to those who have publicly opposed the Weemala devolution plans including the NSW Greens (who were vocal in their opposition during the City of Ryde Council meeting); the MP for Lane Cove, Anthony Roberts; the Australian Labor Party Candidate for Bennelong, Maxine McKew; the Shadow Minister for Disability Services, Andrew Constance; and the Prime Minister.
We have also written to Minister Keneally, urging her to intervene to ensure that all residents of Weemala are provided with the same opportunity to live as part of the community, as provided for in the original redevelopment proposal. Finally we urged the Minister to make strong public statements about the well-documented positive outcomes that result from community living.
PWD has been discussing our concerns directly with the RRCS, and offered individual advocacy support to the 16 residents affected by opposition to devolution of Weemala.
In all our advocacy efforts on this issue, we consistently raise concerns at the prevailing negative assumptions, within government and the community, that people with complex, high medical support needs cannot be supported to live in the community. We point out that some of PWD’s longstanding members are ex-residents of Weemala, and these members are strongly opposed to institutional living arrangements for all people with disability. In addition, we stress that through our advocacy activities, PWD has assisted a number of Weemala residents with complex, high medical support needs to relocate to community living situations. With appropriate support, these people lead successful and fulfilling lives as active members of their own communities. None would choose to return to institutional living.
PWD will continue to campaign on this very critical issue. For further information, contact Therese Sands or Matthew Bowden.
What you can do
PWD urges people with disability, the disability advocacy and human rights sectors and all those concerned to address these threats to the hard-won rights of people with disability.
- Write to NSW Minister for Disability Services, Kristina Keneally, about concerns regarding the redevelopment of institutions in NSW, including Weemala.
- Write to the Prime Minister about concerns regarding his support for redevelopment Weemala, and concerns about the supported accommodation proposal announced as part of the Disability Assistance Package.
- Write to the Commonwealth Minister for Families, Community Services and Indigenous Affairs, Mal Brough, about concerns regarding the supported accommodation proposal announced as part of the Disability Assistance Package.
- Write to your NSW and Commonwealth Members of Parliament and Senators with your concerns about these issues.
- Write to your local papers.
- Distribute this information to people with disabilities, their friends and families and through your networks.
Contact details for NSW members of parliament: www.parliament.nsw.gov.au
Contact details for Commonwealth politicians:www.aph.gov.au
Weemala devolution derailed
Plans for the redevelopment of the RRCS, including the devolution of Weemala, have been proposed for some time. Proceeds from the redevelopment of the site will fund the development of a world-class facility for the rehabilitation of people with acquired brain injury. Devolution of Weemala has been welcomed and supported by many people with disability and a broad range of disability advocacy organisations.
Devolution plans for Weemala include measures to assist the 41 residents to be relocated and appropriately supported in a range of community living options of their choice. Assistance is to be provided primarily through the RRCS Community Integration Program (CIP).
The CIP specialises in the provision of home-based support and access to services for people with disability to enable them to lead valued lives in the community. The RRCS believes that the CIP is increasingly considered a lead authority in community inclusion for people with disability.
The RRCS redevelopment proposal was on the agenda of the City of Ryde Council meeting held on the 7 August. At this meeting, the Council rejected the redevelopment proposal because of concerns that there were no accommodation plans on-site for residents of Weemala. This position was a strongly argued position including from Greens’ Councillors and representatives from NSW Greens.
On Monday 13 August, the Sydney Morning Herald published an article, 'Turfed from the only home they know', which argued for the continuing congregate care of 16 residents of Weemala who had complex, high medical support needs.
Weemala is situated in the federal electorate of Bennelong and the State electorate of Lane Cove. Both the Labor candidate for Bennelong, Ms Maxine McKew, and the MP for Lane Cove, Anthony Roberts, were quoted in the article as being opposed to the devolution plans.
The article paints a picture of unfortunate and helpless Weemala residents ‘turfed out’ of this institution and its community of 41 long-term residents.
‘Weemala’s Victorian-era façade and austere corridors belie a warm camaraderie inside amongst residents and nurses since its inception more than a hundred years ago as a ‘home for incurables’ bequeathed by Henry Moses, MLC,’ the Herald reports.
The article goes on to describe the tragedy that awaits these residents as they are compelled to leave this happy community and are moved out into the community.
By Tuesday 14 August, the politicians had appeared to recognise the political potential in this story, rather than the philosophical issues involved, and all were keen to defend the ‘rights’ of the Weemala residents to remain institutionalised.
The NSW Planning Minister, Frank Sartor, issued the RRCS Board with an ultimatum that Weemala redevelopment plans would be shelved unless ongoing onsite accommodation was provided for 16 Weemala residents.
The Prime Minster, the Federal MP for Bennelong, made a statement that the redevelopment plans of Weemala were ‘outrageous’. In the ABC Radio National news broadcast at 6.30am, the Prime Minister was quoted as stating that the residents of Weemala would ‘not be forced to live in the community’.
Under pressure from political opposition, RRCS agreed to the inclusion of a purpose built facility on-site to accommodate the 16 residents in the redevelopment plans for RRCS. Both Minister Sartor and the Prime Minister welcomed this agreement from RRCS.
In addition, the Prime Minister offered to provide independent assessments to the residents of Weemala, through the Commonwealth Rehabilitation Service (CRS), to determine their immediate and long-term needs. This offer was presented by the Prime Minister as a solution to what he believed was a lack of planning for residents of Weemala. However, the RRCS devolution plans already incorporate thorough needs assessments of residents using a respected tool developed by the Centre for Developmental Disabilities Studies (CCDS).
Commonwealth Government supported accommodation program – more institutions?
On the 28 June 2007, the Federal Government announced a $1.8 billion assistance package for people with disability, their families and carers. The Disability Assistance Package includes a range of measures
- additional support to people in disability business services, including 500 additional supported employment places in disability business services
- $1000 tax free payment to parents of children with disability under the age of 16, who receive the Carers Payment (Child)
- additional in-home and centre-based respite services to assist about 7,500 carers aged 60 years or more, and their children aged 25 years
- a new in-home support service for people with disability who are being cared for by parents aged 65 and over; as well as services to enable a son or daughter previously cared for by their parent to continue to live in the family home after the parent can no longer provide care
- new transition support services to assist older parents and their adult son or daughter with disability work through their options and plan their future care needs
- a new supported accommodation service, providing 1750 new places in 175 new facilities to assist parents who are aged 65 years or more, who receive a Carer Allowance, and who have provided care for a significant period of time for their son or daughter with disability aged 40 years or more.
In addition, the Commonwealth Government will provide $1.5 million to set up a high level inquiry to explore longer term options in the delivery of supported accommodation, including the potential for support from corporate and philanthropic sources to develop a market for private disability accommodation.
Under the Commonwealth State Territory Disability Agreement (CSTDA) the States and
Territories have responsibility for specialist disability services, such as respite and supported accommodation. The respite and supported accommodation components of the Disability Assistance Package are not being offered as part of the CSTDA, and this represents an emerging move by the Commonwealth to intervene in areas of State and Territory responsibilities.
PWD welcomes additional support to address the lack of respite care and supported accommodation for adults with disability living with ageing parents. We, however, have serious concerns about Commonwealth intervention in these areas, including duplication and privatisation of the service system and the potential undermining of service standards. We will continue to raise these issues with the Prime Minister, Minister Brough and FACSIA.
For more information on the Disability Assistance Package, go to the FACSIA website at: www.facsia.gov.au/internet/facsinternet.nsf/disabilities/assistance_package.htm
PWD and Weemala – a long history
PWD’s roots are embedded in the Weemala story. Some of our earliest members and most energetic activists for the rights of people with disability have been residents of Weemala.
John Roarty, author of Captives of Care, was one of the first members of the fledgling PWD organisation. Captives of Care is John’s memoir of his life at Weemala and the struggles that he and other residents faced to achieve rights as basic as having holidays away from the institution, watching colour TV and using electric wheelchairs. His book became a film that achieved international exposure and recognition.
When John, who had severe physical disability, went to live at Weemala in 1937 at the age of 14, there were 65 residents, including five young people. On his first day there, John was put to bed at 3.30pm, a routine built around nursing shifts. He voiced his objection, and so began a commitment to activism spanning the 58 years he spent at Weemala, up to his death in 1996 at the age of 74.
Les Hume, ‘a very courageous fellow’ in Roarty’s words, became a Life Member of PWD. At Weemala he fought for the right to own and use an electric wheelchair. Les wrote a regular column for the PWD newsletter, LinkUp, called, with characteristic wit, ‘Les laughs while Hume fumes’.
Another influential Weemala resident is former PWD Board member, Treasurer and now Life Member, Jan Daisley. Jan entered Weemala as a young woman after an allergic response to a routine operation left her with multiple disability. After 30 years at Weemala, Jan moved into the community in 1993. ‘One of the registered nurses at Weemala told me I would not last a week in the outside world – I told her to go to hell,’ Jan said. Jan has since studied at TAFE, worked in open employment, gained a Master’s degree and written a book on her experiences, I hear more than you see.
Over the past few years, PWD has provided advocacy and support to countless residents and their families as the institution devolves, with residents successfully moving to a range of supported community living accommodation.
PWD’s advocacy work has also included working with people with disability and their families during the devolution of other institutions including Greystanes, Woodstock, Cherrywood, Warrah, Fairholme, Inala, Mannix, Whitehall, The Hall for Children, Kanangra, Strathallen, Riverside, Rydalmere, Grosvenor, Marsden, Lachlan, Peat Island and Stockton.
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