Standing Committee On Social Issues

About this Item
SpeakersBurnswoods The Hon Jan; Moppett The Hon Doug
BusinessCommittee, Report

Page: 13947
    Report: A Matter of Priority—Report on Disability Services

    Debate resumed from 27 February

    The Hon. JAN BURNSWOODS [8.15 p.m.]: I am pleased to commence the debate on Report No. 23 of the Standing Committee on Social Issues entitled "A Matter of Priority—Report on Disability Services". As many honourable members will be aware, this is the second report of an inquiry that began in mid 1999. Members will recall that the first report dealing specifically with the Government's decision to seek expressions of interest for some Department of Community Services [DOCS] group homes was tabled in this House in December 1999. Under the terms of reference at that time, we were asked to examine more generally the level of unmet need for accommodation services in New South Wales for people with a disability, the adequacy of the Government's response to that unmet need, the level of need for respite care, the security of ongoing funding arrangements for the non-government sector, the desirability or otherwise of a continuing role for government in directly providing services to people with a disability, the adequacy of administrative arrangements between the Ageing and Disability Department [ADD] and DOCS in respect of those services, and the status of the implementation of the Disability Services Act 1993.

    In pursuing the second part of our inquiry, the committee has undertaken a broad-ranging examination of disability services in New South Wales, and I believe we consulted widely in the lead-up to this report. Our consultation certainly revealed that there are many areas where people with a disability can benefit from additional assistance. It quickly became clear to us that action was needed immediately in specific areas in order to assist people in greatest need and to restore confidence in the disability services system.

    Speaking directly to people—particularly those with a disability and their carers—made committee members and our invaluable staff aware of the extremely difficult circumstances in which many of them live. Having consulted as widely as we could and heard a variety of evidence—I suppose in a preliminary manner—we decided to work on an interim report to highlight the need for urgent action in three priority areas. I guess that explains why we entitled our report "A Matter of Priority".

    The three areas that everyone we talked to highlighted were: the need for more permanent supported accommodation, the need for attention to the respite care system, and the need to complete the transition of large residential centres to community-based forms of accommodation. I would like to say a little about each of those three areas and bring the House up to date on developments that have occurred since we tabled this report in December last year. Permanent supported accommodation stands out as the area of greatest need in disability services. We found that a relatively small but significant number of people with a disability are living in totally unsustainable care arrangements that place them, their carers and usually their families—often their ageing parents—at risk.

    The report notes the undersupply of permanent accommodation to enable any of these people to move from their current situation with a carer. When we spoke to families who were in a state of absolute crisis as a result of this lack of accommodation we found that some of the worst results were injury to care givers, social isolation, inability to participate in the work force or enforced early retirement from the work force, depression and poverty. It is very hard to overstate the effects of caring for someone with serious disability on families that face difficulty for whatever reason and the way in which the dignity of people with disability is undermined by the situation.

    From a systemic perspective we found that the lack of permanent supported accommodation means that families remain more or less in a state of permanent crisis. In turn this means the disability services system is focused largely on crisis management so that services intended to support a range of people and to help people cope with the demands on them of caring for someone with a disability at home, services such as respite, are continually diverted to support the very small number of individuals whose arrangements have broken down and who therefore require almost permanent access to respite. Therefore, we see the phenomenon of blocked beds, as it is known. People who require a permanent accommodation solution receive unsatisfactory temporary solutions, and this in turn prevents such services from supporting the far broader range of people who need less intensive care. Of course, all this necessary preoccupation with crisis management has impeded the development of a thoroughly planned, effective and equitable system.

    So we can note, as the committee did, that this situation is the result of a number of historical factors that goes back decades. Indeed, there has been a lack of investment over a significant period of time. Nevertheless, we were pleased to note that things have started to improve after the commencement of the inquiry. We believe our inquiry and the work of committee members have contributed to the improvement. The 2000-2001 budget was widely welcomed by people with disability and their families and advocacy groups alike because it included substantial new funding for accommodation services for people with disability. Measures were introduced to ensure an increased emphasis on preventive measures, which, overtime, will reduce the demand for permanent accommodation in the crisis atmosphere I described. I am delighted to report that further increases were announced in yesterday's budget. The Government continued the program that was started last year.

    The committee applauds this year's efforts as well as the efforts of last year, but we are conscious that demographic pressures, the aging of carers, the tendency for people with disability to live longer, and the growth in numbers of people with disability in a range of specific areas continues to make this situation that much harder to deal with. Arising out of all this the committee recommended in its report in December that each year for five years from the date the report was tabled the Ageing and Disability Department adopt a growth target of 200 additional permanent supported accommodation places for people with disability. We believe this progressive long-term expansion will be necessary to ensure that those welcomed measures of recent years will actually succeed not only to meet existing needs but also to meet the needs that are continually growing.

    Similarly, with regard to respite, we noted that adequate provision of respite services, particularly out of home respite, is an essential component of the whole services program. If there is no adequate respite, the informal family-based support services will break down and that in turn creates the need I talked about earlier. Respite is a highly cost effective way of managing demand for permanent accommodation. It is also a user-friendly and popular way of meeting that demand and of enabling families to cope with what is often a considerable burden. From our consultations probably the most consistent message we received was that families rely totally on respite services to maintain positive caring relationships. When sufficient respite is not available families simply break down, and this can have a catastrophic effect on all individuals involved. We noted the current undersupply, we noted the way in which that results, at least in part, from the blocked beds about which I talked, and we noted the interrelationship between the three areas we focused on. If there were more permanent accommodation, there would be more respite effectively available. If there were more respite effectively available, there would be less need for supported accommodation, and so on.

    We were particularly struck by the excellent series of recommendations made by the respite working group, an expert panel convened by the Government that reported last year on a number of measures to address problems in the respite care system. We considered those recommendations carefully and we believe they provide an effective way forward. We recommend that they be implemented. In particular, we support the recommendations that were directed towards establishing a separate system of respite for people in crisis so that the routine scheduled out-of-home respite needed by so many families does not get diverted to meet those crisis needs.

    The third issue that has been discussed for 20 more years relates to devolving the traditional large residential centres—the old hospitals and centres that continued to exist, sometimes accommodating a relatively small number of people, in one case over 500 people. At present approximately 2,400 people live in such centres, most of which do not conform to the Disability Services Act 1993. The report notes the Government's commitment, indeed it is a bipartisan commitment, to devolve those centres and provide alternative accommodation in the community. Although that is a longstanding bipartisan commitment, as I said approximately 2,400 people remain in large centres and continue to form a major part of the supported accommodation system. Some families with whom we consulted expressed fears about moves towards devolution.

    Some of them are cynical and some of them have reason to be cynical about promises made and not delivered. A range of views were expressed to us, not only by families but also by staff in large centres who, in some cases, have also had experience of spending months, and in some cases years, preparing transition plans only to find that nothing has happened. There is a considerable atmosphere of mistrust and fearfulness about devolution. Nevertheless, the committee came down very firmly on the side of that longstanding commitment that large institutions—I believe that is often the appropriate word, although we have normally used the word "centre" rather than "institution" because of what it implies—are not an appropriate place for people with disabilities.

    We recommended that all medium and large residential centres should be funded to complete transition to models that comply with the Disability Services Act by December 2010. The devolution program requires a considerable amount of planning and funding by government, at least in the short term, although we believe that in many cases government can eventually recoup the cost as the larger centres are closed. In the medium term we recommended that funding be identified to ensure that 80 per cent of residents be transferred to appropriate community-based accommodation by December 2005. To alleviate the fears, mistrust and cynicism to which I referred earlier we recommended that the Government provide an unconditional lifetime guarantee of service to all residents who transfer from either government or non-government large centres into community-based accommodation.

    In the majority of cases the parents of people living in large centres are ageing rapidly. They are often in their 60s, 70s, 80s and, in some cases, their 90s. They desperately need to be confident that their children or siblings, as they are in some cases, will not be faced with several moves, and that if they move into a community setting and if it is chosen in all the appropriate ways it will be secure. We have been encouraged by the initial steps taken by governments in recent times with the announcements that a number of centres will close and that all residents in those centres will be provided with full support in a community setting. We hope that the current program will be expanded significantly as soon as possible to allow us to meet the targets in 2005 and 2010.

    The list of centres that will be devolved is long. The Government centres include Grosvenor, Lachlan, the Marsden Rehabilitation Centre, Woonoona, the Pennant Hills Hostel, York Road, Gow Street, Strathallen, Woodstock and Stockton. The non-government centres include Greystanes, Mannix, Whitehall, the Cram Foundation and Jennings Lodge. The non-government centres and some of the government centres continue to house children. Unfortunately, not everyone can be devolved at once. The committee strongly endorses the commitment that priority must be given to children. It is shameful that in some cases we continue to place young children in large residential centres that were declared outmoded 10 or 20 years ago.

    The progress in moving people out of large residential centres has been slower than anyone had hoped. A great deal of planning and considerable consultation with families is necessary. There are issues about whether people who have been friends and who have lived in the same centre for many years should stay together, or whether, when devolution occurs, a resident should, for instance, move right across New South Wales to relocate nearer to other family members. A great deal needs to be done to work out a suitable funding package. Two or three years down the track a person who has moved into a more flexible and community-based setting may find that his or her needs change or it may become apparent that the needs were slightly different than first thought. That person may need more funding to access different support. We do not want a situation where an appropriate funding package and support arrangements may not be available.

    The centres I listed are holding meetings and taking part in negotiations. In some cases some people have moved from the centres I have listed and in other cases people have very specifically indicated where they want to go. Many families and residents associated with Strathallen at Goulburn have identified a wish to remain in Goulburn. Others want to go to Yass, Queenbeyan or Bega. Consideration is being given to perhaps remodelling some cottages in the Strathallen complex to set up something more akin to group homes so that at least part of the site can continue to be used. Those types of discussions are the result of the consultation process with residents and their families.

    It is a long and complex program, but one that the committee hopes will be carried out as soon as possible to finally deliver the program of devolution. We undertook extensive consultation during the second stage of the inquiry. We visited a great range of government and non-government residential centres not only in Sydney but in rural and regional New South Wales. When we visited such facilities we had the opportunity to meet and consult with staff, residents and their families. We also conducted community consultations. We visited Dubbo, Albury, Wollongong, Newcastle, Broken Hill, Tamworth, Ballina, Parkes and a couple of other places.

    A total of 351 people attended the consultations, and that was a very valuable experience for the committee as well as the people in the centres and surrounding regions who were able to speak to us. I thank all of those who took the time to participate in those consultations: the people with disability, their families, carers and staff. I thank the staff of the services we visited who often went to great trouble to make us welcome and to help us. I might come back to some of these issues when I reply at some future date. I also want to thank the staff of the committee secretariat who, on this inquiry as on others, proved their great dedication, and another student intern, Thea Brahe, who was of great assistance to us.

    The Hon. DOUG MOPPETT [8.38 p.m.]: I am very pleased to support the motion moved by the Hon. Jan Burnswoods that this House take note of the second report of the Standing Committee on Social Issues into the disability area, entitled "A Matter of Priority". This is the second of what I anticipate will be three reports on people with disability and their needs.

    I venture to say that this is the most significant volume of the three, because it deals with the most urgent—I would go so far as to say the most pitiable—needs within the disability sector. In that formal way in which we move, I hope we will concur that the House should take note of this report. A great effort was made by the committee to make this report succinct and short, and to remove from it any hint of political rhetoric, so that it is a document that could be commended not only to the House, but to everyone to read about the circumstances of people living in the State of New South Wales in the year 2000 who endure the affliction of disability.

    It is not altogether a document that will fill you with satisfaction about what has been achieved, but it will acquaint you with what needs to be done and what can be done to improve the circumstances of these people. I want to remind the House, and I have mentioned this before, that it is only 10 years since we moved from a situation where any increment of funding that government at any level provides for services to people with disabilities could be regarded as a generous and charitable act. These are people whose rights have been defined by law, but the responsibilities which devolve on government to meet those rights have not, as yet, been fulfilled.

    Although the chairman's remarks in this debate were admirable, in that 20 minutes it is very difficult to encompass all that needs to be said. She was complimentary towards the Government for some of the initiatives it has taken, particularly the financial initiatives in the last budget, and referred to their appearance again in the present budget. The general tenor of my remarks would not be as complimentary. Much more is left to be done and we should not be reluctant to offer some criticism.

    This report covers firstly the widely canvassed area of unmet need for accommodation services. It then covers the overloaded and totally inadequate system of respite care that the committee examined during the course of this report; and goes on, as the chairman pointed out, to devolution, which is bipartisan. There is no controversy left , yet progress has been glacial in implementing the acknowledged goals and aims of this Government and its predecessors. Progress has been glacial. There is no other way of saying it. There are still 2,000-odd people living in these large institutions and it is quite certain that, unless something radical happens, many of them will only leave those institutions after they die.

    That is quite unacceptable. There is no reason in this day and age for people still to be housed in what are the remnants of a mental health system rather than an accommodation service for people with disabilities. But it does go on, for a number of reasons. I do not suggest for one minute that it is some perverse or wicked indifference to these people. The other important points raised in this report deal with strategic planning and, together with the provision of further financial capacity to the various agencies, the need for administrative capacity to implement those programs.

    That is currently one of the most critical shortcomings . If a comprehensive plan were presented to the New South Wales Cabinet, funding would follow. The great difficulty is that this whole area is shrouded in misunderstandings and misleading statements, such as: "If you open the floodgates, where will it all end?" The total amount of demand is well understood, the solutions are well known and all that is needed is a bold plan that involves devolution of the old institutions. Substantial revenue would flow from the sale of the real estate involved.

    It certainly needs targets for supported accommodation for people who are at present living with parents and carers, but it is not some infinite amount. People should not be frightened that if the unmet demand is met those who do not have needs will suddenly put up their hands and say, "That looks like a good sort of situation. That is a good cop. I would like to live in a group home." You will not find any of those people having coffee in the Z Bar opposite getting together and saying, "Gee, you would be lucky to get on the group homes list." This solution may not be perfect, but at least it gives a level of decency, humanity, and quality of life to people who, for many years, have been denied it. Many people have depended for far too long on ageing carers in situations that simply cannot go on much longer.

    We need an assurance that, as those relationships mature to the point where care can no longer be provided, the provision of supported accommodation will be available. Unfortunately, that is not happening . I will come back to this issue on another occasion but I want to round off my remarks by referring to the group tendering proposal, whichwas the subject of the committee's first report and a matter of great controversy. It was announced in the 1999 budget, yet this report points out that by December 2000 not one single expression of interest had been processed; not one single one of those services that were nominated to be put out to tender had been concluded. Not one out of 41! Those who have been living in a state of terror about their future have been left in limbo as aresult of endless miles of planning and failure to decisively implement this decision . I hope to return to this issue to when we next debate this subject.

    [Time for debate expired.]