Disability Services Commission — Ben’s Administration Company
HON ALISON XAMON (East Metropolitan) [5.39 pm]: I rise tonight to talk about Ben, a young man with serious disabilities, and the experience of his family in its attempts to have more control over the use of respite payments from the Disability Services Commission. I know this is an issue that the minister is very much aware of. It is not a happy story; there have been no winners in this, but I hope that we can learn from the experience of Ben’s family. Ben is severely disabled and he has two siblings who are also disabled. His parents are getting older—I spoke about the special challenges for older carers last night—and quite understandably want to put in place strategies to ensure that their children are taken care of when they are no longer able to care for them.
In 2009 Ben’s parents established Ben’s Administration Company and approached the Disability Services Commission with the proposal that Ben’s Administration Company manage Ben’s funds and supports. I am sure members would agree that on the face of it that proposal is very worthwhile, with the potential for all parties to win. Not only would Ben’s family get more flexibility about how and when Ben’s allowances are spent, but also, because there would be no third-party service provider administering the funds, the administration costs would be significantly lower and the funds would go substantially further to doing what they are meant to do—namely, providing services to a family that desperately needs them. Ben’s parents estimate that under this model Ben could potentially receive between 800 to 1 000 more hours of respite care than under the usual model.
Ben’s respite grant was paid directly to Ben’s Administration Company for nine months under interim arrangements, while DSC service contracting and development staff and Ben’s family tried to come to agreement on how the concept could be progressed as a formal project. They were not able to reach agreement and in March this year the trial was stopped and Ben’s family was told that Ben’s DSC-funded supports would, from now on, be funded only through an existing pre-qualified service provider. Ben’s family still has many questions about why the DSC chose not to proceed. The family does not accept the reasons provided by DSC and is unhappy with the responses to questions seeking clarification, some of which I have asked on the family’s behalf. Ben’s family is also frustrated that there is no avenue for appeal against the DSC’s decision and, as a result, is expressing its very deep concern and the feeling that it has been let down by the system.
I am sure that members are aware of what it can be like to be caught up in red tape and bureaucracy, and know that having to meet demands considered to be pointless, unreasonable or just plain incomprehensible can be extraordinarily frustrating. Ben’s family says that it has been left completely exhausted by its efforts to comply with the system. It is important the minister take on board that this family is, right now, feeling fundamentally unsupported by the government.
Hon Helen Morton: I have met the family.
Hon ALISON XAMON: I am aware that the minister has made a point of being across the issues that I am raising.
We need to be realistic when we are talking about disabilities and personalised services, because we are not talking about businesses or large service providers. We are talking about families whose capacity levels are very different and whose fundamental and sole goal is the care of their loved one. I do not believe that Ben’s family should have had to go through the distressing experience that it went through and am convinced that the matter could have been handled differently. I also recognise that it is a balancing act. We need to ensure that those who take responsibility for managing another person’s money are not able to exploit that person. Obviously, that has to be at the forefront of these arrangements. I am absolutely aware of that. However, at the same time, we need to ensure that when we impose these sorts of arrangements or try to venture into these sorts of arrangements, carers are given some level of trust to perform their role. I understand that it is very difficult to get that balance right. Expectations have to be realistic and systems, relationships and communications must be set up with this in mind.
I also want to note my concern about one of the reasons given by the Disability Services Commission for its decision not to proceed with the project. I have seen this reason in writing. It said that one of the reasons was because Ben’s family had publicly criticised the DSC. I must say that, as a reason, I think that is absolutely unacceptable. I imagine that other members of this place would certainly share that concern. I note that in answer to questions asked in Parliament about this issue, the minister acknowledged that complaints can improve services. However, I thought that there was an implication that complainants should only go through a complaint process, rather than make a complaint public. If that is the case, I find that suggestion unacceptable. Government departments should be able to receive legitimate criticism from families and any of their advocates. People should be free to provide strong independent advocacy for their needs without fear of repercussion. Again, we must remember that we are talking about a family that has been fighting hard for decades for their children. They only want what is best for their children.
Those who receive funding, whether they be individuals, families, not-for-profit organisations or even for-profit organisations, should not feel that this means they will lose their right to frank and free speech. I have already voiced my concerns that the government’s intention to increasingly outsource many community services to the not-for-profit sector runs the danger of impacting on these groups’ abilities to act as strong independent voices for marginalised and vulnerable members of our community. We really need these voices. We know that many disability services consumers are simply not getting what they want from the system. lndividualised funding models that are truly individualised and flexible could go a significant way towards helping these people. That the Disability Services Commission is actively promoting models of self-directed services for people with disabilities across WA is a positive thing, but we need to start seeing improvements on the ground. The more personalised, flexible and tailored options that families have for support and to provide care for members with a disability, the better; and they must be able to be worked by the people who are trying to manage them. I want to acknowledge that the DSC clearly had good intentions in initially supporting this concept. Its willingness to try something new is obviously a positive thing, but it appears clear that there is significant room for improvement. I would imagine that the minister would probably agree with that as well. Hopefully, some lessons have been learnt through this experience and the next family to trial a program like this—I hope there will be more—will have a significantly better experience than Ben’s family, because it has certainly left them feeling extraordinarily embittered.