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General Purpose Standing Committee No. 2

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About this Item
Subjects -  Handicapped and Disabled; Parliamentary Committees: New South Wales: General Purpose
Speakers - Forsythe The Hon Patricia; Chesterfield-Evans The Hon Dr Arthur
Business - Committee, Report


    GENERAL PURPOSE STANDING COMMITTEE NO. 2
Page: 22858


    Report: Post School Programs for Young Adults with a Disability

    Debate resumed from 13 September 2005.

    The Hon. PATRICIA FORSYTHE [3.17 p.m.]: I am pleased to make some comments, as Chairman of General Purpose Standing Committee No. 2, on the report of the committee's Inquiry into Post School Programs for Young Adults with a Disability. This was a most significant inquiry. It afforded a very good opportunity for parents, carers and people with a disability to express in clear and open terms the impact of the Government's then proposed changes to post-school disability programs. Those changes would have meant real and significant cuts, principally in funding but I suspect as well in the choice of programs that were to be available as a result of those funding cuts. The consequence of the committee's inquiry was, first, that it enabled people to articulate a position far more clearly than maybe the Government had heard to that point. The bureaucrats may have heard such articulations, but I believe the committee's work pricked the conscious of the Minister and others in the Government.

    Evidence give by people with a disability and their carers really brought into focus the problems experienced by families of people with a disability—a disability that is unlikely to change, a disability that will not just go away and has to be managed by families and carers and, ultimately, sometimes by the Government. I really am so grateful to those who appeared before the committee. The committee undertook a number of site visits, including visits to a number of places that offer programs. We sat down with people with a disability and conducted public forums at which people not sworn in as witnesses, as is sometimes the case, were able to express to the committee in an open and frank way what was involved in providing the level of support that they needed to provide for their adult children, their adult siblings or someone in respect of whom they were in a caring role. The committee was also able to hear from people with a disability.

    Post-school programs have been in existence for approximately a decade, as we heard earlier today during the debate on the Appropriation (Budget Variations) Bill. The programs are designed to support mostly people with an intellectual disability when they leave school—to help them to face the future. It is hoped that some of these people will be able to make a transition to work, and a program for that purpose was put in place, initially for a period of two years. The problem with that arrangement, however, was those in the program who could not make the transition in the required time were out.

    Then, at a different level, there was to be an ongoing program. Under the changes that were proposed by the Government, in respect of which the committee was undertaking its inquiry, the programs were to be available for most of these people, some of whom have profound disabilities. The circumstances for these people will not necessarily change, they will not necessarily be able to move forward and make the transition to work. They require a level of program that provides for their care and maintains their interest and also provides an opportunity for day respite for their carers. It is not an easy situation; it is one of the most complex areas of government.

    I thank the members of the committee who participated in the inquiry—the Hon. Tony Catanzariti as deputy chair, the Hon. Dr Arthur Chesterfield-Evans, the Hon. Jon Jenkins, the Hon. Christine Robertson, the Hon. John Ryan and the Hon. Henry Tsang. We worked together in a strong and co-operative manner and were well supported, as always, by the committee secretariat. I am grateful that the Government's response to this report, which was dated 15 March, acknowledges that some things had to change. I give due credit to the Government for recognising that the situation as it existed was not good enough, certainly not for people with a disability and their carers, or indeed for the program providers in the many centres who were trying to do so much with so few resources.

    The Government has responded appropriately and has taken on board many of the 17 recommendations of the committee. That is not to say that the outcome at this stage will be a giant leap forward for people with a disability. The jury is still out on whether the Government will implement all the recommendations, but I can say that at least there is acknowledgement by the Government that the situation was quite simply not adequate. I pay due regard to the Minister for listening to what the committee had to say. Those in the media and elsewhere who think the role of the Legislative Council is that of a useless appendage to the role of government, might take the opportunity to read some of the reports produced by the committees of the Legislative Council—and this report is a good example. They might just change their minds.

    The committee's program took us to centres as diverse as Wagga Wagga and Armidale. We received a total of 154 submissions from people who were just immersed in the issue, and we devoted hours of committee time to the task—more time, I suspect, than any level of government, even the bureaucrats specifically charged with the oversight of the program. We were able to step back and examine the issues dispassionately, and then move forward together. Members of the committee were privileged to hear from some of the parents and carers of people with a disability, who opened up their hearts to us about what it meant to care for people with a profound disability. The committee made a genuine effort to understand the situation that was presented to it, and it found that what was being offered to these people was just not good enough.

    I congratulate the Government on its announcement today of a $5 million enhancement of the post-school program. But, that will not be enough. It is never enough when you are dealing with people with this level of disability, but it is recognition of the fact, as identified by the committee, that the problems for families of people with a disability are unsustainable. I will continue to monitor the situation. As I said, people opened up their hearts to us at the forums we conducted. The committee took the very bold step of providing a summary in plain English at the beginning of our report so that the people with a disability who participated could see that we had taken on board many of their issues.

    I am absolutely passionate, as is my colleague the Hon. John Ryan, about moving beyond seeing everything in terms of delivering a program for, as it were, a class of people. We are dealing with people with very different needs—the needs of families, carers and individuals, as well as the specific needs of people with very complex problems arising out of their disability. I urge the Government to look in particular at the Western Australian model, in which funding programs have been tailored on the basis of specific needs of people with a disability, and people are able to come forward and make specific requests about the nature of funding.

    The Government's response noted the Western Australian model. Indeed the Government has indicated it is prepared to look at—and I am sure by now it is looking at—that model of individual funding packages. That would be a huge step forward for people with a disability in New South Wales, because it would be recognition that, although we are dealing with a class of people, each is as individual as the members of this Chamber and others in the community. It should not be a case of trying to put round pegs into square holes, yet so often that is the effect of block funding for people with a disability. By being flexible and creative people with a disability are often able to devise their own solutions or to work with their carers to come up with solutions. We documented in our report a couple of examples from Western Australia, which has developed a flexible model of program delivery. And that I am sure, at the end of the day, would be the best outcome for everybody concerned.

    This most interesting inquiry showed that people can make a difference. We, as parliamentary members of that committee, and those with whom we became involved, made a difference. In my view we required the Government to stop and look at this most complex issue—and I do not resile for one moment from the fact that it is complex. I believe the outcome of the committee's deliberations will be a more flexible delivery of programs in a very complex area. However, as I said, the jury is still out on whether the Government will deliver on all that has been promised, but there has been a recognition by the Government that not only more money needs to be found but also an examination of how the programs are delivered has to be undertaken.

    As always, the committee was well supported by its secretariat. The committee would not have been able to do what it did, if it did not have the support of its secretariat and the advice that it took on board from consultants with special training in disabilities. It is my privilege to commend to the House this report into changes in post-school programs of young people with a disability. I was my privilege to chair the committee.

    I look forward to hearing the contributions of my committee colleagues because I am sure they all, as I did, learned much from interacting with carers and people with the most profound disabilities, 24 hours a day, seven days a week. In some cases we were able to see beyond their school days—to the future, where many will make very strong contributions to their communities while others, because of the nature of their disabilities, will have to be given a level of support that the Government finds difficulty in funding on all occasions.

    The Hon. Dr ARTHUR CHESTERFIELD-EVANS [3.31 p.m.]: This was a very interesting inquiry and the committee's report is extremely valuable. The words "Getting a Fair Go" were included in the title to indicate that we were examining the deal that people with disabilities in our society receive as opposed to the deal that they ought to receive. It is important to put these inquiries into context because people with disabilities are demanding an increasing share of the budget, and that obviously has to be justified. Historically, the really significant change is in the paradigm of medicine and people who have disabilities.

    Prior to World War II people with disabilities often died as a result of bladder infections or bedsores. John Grant, who is one of the great men I have met in my life, set up a spinal unit because he said that people were looking for miracle cures instead of acknowledging that patients were dying of bedsores and bladder infections. He maintained that better hygiene and better beds would drastically reduce the number of deaths. Similarly, the development of neonatal intensive care units resulted in the survival of an increasing number of children with disabilities. Parents either placed their disabled children in institutions and raised money to keep the institutions going, or kept their children at home. Those parents are now in their eighties, and their sons and daughters with disabilities are now in their fifties, and that has created a crisis.

    A few years ago this Parliament conducted an inquiry into respite care and the availability of group homes. The inquiry found that, effectively, parents were able to entrust their children to someone else in a group home arrangement. We had deinstitutionalisation accompanied by an expectation that people would not simply move into a minimal stimulation hostel but would try to forge a life for themselves. During the sixties there was a movement that espoused that everyone had rights and that, irrespective of what sort of person one is, one has a right to a decent life. The disability movement was part of the recognition of those rights, and group homes were part of the institutionalisation.

    The objective recently has been to give people with disabilities as normal a life as possible within the limits of their capacity. Technology has made that far easier than would otherwise have been the case because it has resolved many problems associated with aspects of movement and transportation. As these developments occur, of course the sky is the limit with regard to costs, and the Government is trying to limit that cost. It is difficult to believe that changes in the Adult Training and Learning After School [ATLAS] and the Post-School Options Program, which the committee was set up to inquire into, were not based on a Treasury realisation that, with the number of people receiving support increasing greatly and a continually increasing number of disabled children leaving school, the costs will increase tremendously. The result has been that an increasing number of people are receiving support.

    Funding organisations rather than individuals meant that organisations at a certain level of funding could be squeezed to take more and more individuals for the same level of funding, and that meant that less financial support per head was available. The parents who had fought for the rights of their disabled children for many years were not fooled by such nonsense. Understandably, they kicked up a fuss. That was the starting point for this inquiry. The ATLAS program was designed for developmentally delayed school leavers who, with a little more training, would be able to take up some work options and function adequately to look after themselves.

    The Hon. John Ryan: And also be employed.

    The Hon. Dr ARTHUR CHESTERFIELD-EVANS: They would also be employed in an ongoing earning capacity. The people participating in the Post-School Options Program were assumed to be unable to do that but would maximise their level of functioning without necessarily undertaking employment that would support them financially. The two programs were made available, and all thanks go to the Government for that, but those who went into them were sooner or later discharged from them, and that meant that they either went back to watching television with their parents or into some sort of government-funded hostel or institution, and that was quite unsatisfactory. In essence that was what the committee had to grapple with.

    Pursuant to standing orders business interrupted.


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