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Legislative Council - Fifty-First Parliament, Third Session (51-3)
2009-03-25 Daily Xml
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DISABILITY ADVOCACY

The Hon. D.G.E. HOOD (15:52): I rise today to address an issue of great concern to Family First, which I am sure all parties and Independents represented in this place share. I will highlight one service shortly, and I am talking specifically about the disability service sector in this state. There is a lot of information that I could put forward, but I really want to focus on one particular issue, which has been brought to my attention in recent times, that is, that there are only two metrics in the State Strategic Plan on disability, namely, doubling housing for people with disabilities by 2014 and an increase of 400 people in day options programs by 2014. It is encouraging that the government states that it is on target with both targets, and, on the face of it, that appears to be the case.

However, submissions that I have received from people who suffer from disabilities, their families and those affected by these terrible conditions in order to improve their lives and seek assistance through the appropriate channels present a very different story. Of course, whilst individual cases do not always represent the overall situation, some of these stories are very tragic indeed. I suggest that, because of that, two metrics in the State Strategic Plan are possibly not enough, and I urge the government to consider what other areas could be measured in terms of improving the lot of those people in our state who are suffering with a disability.

Against this background, I will explain the care sector's difficulties by referring to the case study of one advocate in particular who I think deserves specific mention. I am referring to a lady by the name of Jayne Lehmann, who is the mother of three daughters. One of Jayne's children has Dravet syndrome, a genetic disorder that has left her 14 year old daughter with significant intellectual, medical, physical and behavioural disabilities. Jayne's struggles in caring for her daughter have brought her to the point of speaking out in public in order to both educate and challenge us to improve the system.

As health professionals, Jayne and her husband John have a great deal of knowledge about both the health system and the care required for their daughter. Unfortunately, they have found that competency insufficient and, sadly, they have found that our health, disability, transport and education systems often come up short when they have tried to meet their daughter's needs.

Jayne's advocacy focuses on giving people with a disability the same life opportunities as those without a disability. If a system works for someone with a disability, it invariably works really well for everyone else. We need to include people with disabilities in our society in a way that values, respects and challenges them and allows them to participate in the rich tapestry of community life that, of course, can be so difficult for them to participate in—even the simplest of activities.

The steps taken years ago for deinstitutionalisation in this sector were significant but, of course, the job is far from done. Many of the services and organisations that the care sector have to use remain institutionalised. Successive governments forgot to plan—or perhaps neglected to plan—for the care sector after deinstitutionalisation. Jayne and John have been forced to work at a high level, lobbying departments, MPs and various arms of government, and the like, putting into disability policy and service delivery the sort of resources that are required to help not only their family but, indeed, the sector as a whole.

Jayne's advocacy has seen her previously appointed to the Ministerial Disability Advisory Council and as a current member of the Council for the Care of Children here in South Australia. She was one of the founding parents of Dignity for Disabled, and she works proactively with government organisations and service providers to evolve their services in practical and useful ways. Her advice is, indeed, valuable.

The care sector continually experiences stress, lack of practical assistance and understanding and, in particular, long-term uncertainty regarding the care of children of all ages. Jayne has produced resources for parents to help them care for their disabled children. She initiated and helped write a booklet on child protection for parents of children with disabilities. She has also set up and maintained an email network to share information with service providers and other parents of children with disabilities.

Family First congratulates Jayne and John for their work with the disabled, and encourages them—and others in the care sector—to keep up their campaign for equality, their fight for appropriate levels of funding, and justice for not only their own children, of course, but for all the children who might suffer a disability in South Australia.

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