SUBMISSION TO PRODUCTIVITY COMMISSION

DISABILITY CARE AND SUPPORT

I am the mother of a 26 year old young man who has Down Syndrome, visual impairment and autism. When he was born we were told to take him home and care for him until he was 18 years old and then it would be possible for him to move into appropriate residential care. In 1984 we all believed that institutions were closing and that there were going to be better housing options for disabled people. This is not the case. Our son was very well educated in both the private school sector (at our expense including meeting 50% of the cost of a teacher’s aide) and the State Special School sector. He would be classified as being severely disabled and yet in many ways he is very able.

As a parent struggling in every day life to provide the best for our son I am not in a position to address the questions raised by the Productivity Commission Discussion Paper other than to say whatever system is suggested by the Commission, must be better than what we currently have in Victoria.

The current system results in my feeling guilty for having had a disabled child as I carry my begging bowl from organization to organization seeking support for my son. The system also treats my son as a second class citizen. Whatever is put in place needs to be a long term sustainable system.

The Victorian Disability Act 2006 contains a fine statement of “Objectives and Principles”, however more funding is required to carry out those “Objectives and Principles”. I particularly draw attention to Section 5 (e) : services for persons with an intellectual disability should be designed and provided in a manner that ensures developmental opportunities exist to enable the realization of their individual capacities.

What my son needs now is meaningful work and shared supported accommodation.

There needs to be more acceptance in the community of all sorts of disability – not just those with visual impairment and those with paraplegia, but those with intellectual impairment and mental illness. In an “all about me” society there will be enormous resistance to an insurance scheme as each wage earner’s contribution will need to be very high to provide the financial support required for such a scheme.

In relation to the question “How long would be needed to start a new scheme, and what should happen in the interim?” my concern is that if a levy is charged on incomes it will be some time before sufficient money is raised and that in the interim the provision of services will stall as everyone waits for the new system to start. Whatever options are recommended I can only stress that effective action needs to be taken immediately.

What I have learnt in 26 years is that everyone who has a disabled child has a different idea of what is best for their child and what they would like in a perfect world and to satisfy every individual need would be very costly. So we need to make compromises and perhaps only provide a limited number of options.

Krystyna Croft