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23 January 2013 As a parent of a young adult (24 years) with a disability as the result of an acquired brain injury at the age of 3 ½ years, I have struggled and have continued to struggle to get adequate care for my son’s ongoing and complex health needs. 6 years ago I made the decision to relinquish the care of my son to the Queensland State Government Disability Services as this was the ONLY way to get the help that I and my other 2 children needed to survive. All of us have been left with chronic health conditions as the result of high levels of long term stress as a result of our caring roles. My son with a disability still does not have recurrent care – the fight continues – my own health continues to worsen. This is a common scenario –chronic health problems in carers as the result of inadequate care have a financial cost to the community and need to be considered in long-term planning of coordinating care for people with a disability in addition to the direct-care for the person with the disability. I am encouraged to see that NDIS is moving forward.

The questions I have about the NDIS include the following points:

• There is a Federal Disability Discrimination Act (1992) and each state has their own disability legislation. What will be used to guide the NDIS?
• There are clearly very inequitable and heavily bureaucratic state government systems – is the NDIS going to add another layer of costly bureaucracy to broken state systems? Or is the NDIS going to replace these clearly broken and costly state systems?
• What is the framework that the NDIS is going to be built on?
• What happens to existing funding that people have been allocated?
• The website mentions a separate funding model for those with catastrophic injuries (Brain / Spinal Injury) – how will this be different? What is the framework for this separate area of people with higher care needs?
• The $1 Billion that has been allocated appears to be a one-of – what happens after the first year? Will there be a Medicare-type levy?
• How will the various states and territories contribute to the NDIS “pool” of money?
• How will the money be allocated?
• What kind of assessments will be conducted to determine eligibility?
• How frequently and with what conditions will these be reassessed?
• What separate sub-categories will be used as part of the framework?
• Who is guiding the “construction” of the needs base for the NDIS?
• Will the money be allocated via NGOs as is currently the situation in Queensland?
• Will there be equity in terms of payment for support staff between NGOs – currently some agencies in QLD pay different hourly rates for support staff?
• How will the people who will receive the services via NGOs be allocated– current practice within NGOs is that they can choose which clients they will service and many deliberately choose less complex clients. Very real discrimination exists within these services by deliberately excluding clients with high care needs – how will this be addressed?
• What kind of quality assurances and accountabilities will exist to ensure that best outcomes for people with a disability and their families?
• Will funding be able to be made available to use within families and preserve family support as they care for their family members?
• Will the NDIS cover support services, as well as aids and equipment?

I am happy to discuss this or any other aspect of the NDIS with the Senate Committee.