Mike Freelander (Macarthur, Australian Labor Party) Share this | Hansard source

I rise today to address serious concerns I have about the bureaucracy of the National Disability Insurance Scheme. Whilst it's no surprise that I recognise the NDIS as the most significant policy reform since Medicare, feedback from patients and constituents is that administrative barriers continue to act as the greatest hurdles to accessing the benefits and aims of the scheme.

I'm prompted once again to raise concerns about the shortage of assessors and case managers within the agency who have experience with paediatric care. As a paediatrician of nearly four decades who continues to deal very closely with severely disabled children, it's apparent that often the children who are missing out on care are those who come from families that struggle to advocate for the needs of their children, and these children are often the most disadvantaged in our community. Too often, advocates need to be assertive, well-versed in medical terminology and treatments, and have a thorough understanding of how to deal with red tape. Whilst families have the best intentions of their children at heart, it's unconscionable that many severely disabled children miss out on necessary care due to no fault of their own.

The same is true for some severely disabled adults. Recently I met an adult who was a patient of mine as a child. He has cerebral palsy. Now, as an adult, he is denied access to botulinum toxin injections for his severe spasticity. That is an absolute tragedy. It will decrease his mobility, it is much more likely he will end up in a wheelchair, and it will make his life much more difficult.

To meet the organisational goals of the NDIS more emphasis needs to be placed on training staff who understand disabilities, particularly in regard to paediatric care and those with severe neurological disabilities. A common criticism that patients and families espouse to me is that, too often, constructive criticism regarding the NDIS falls upon deaf ears. When I set out to run for the seat of Macarthur, I vowed to my patients that, whilst my involvement as a paediatrician would be limited, I would represent them, their stories and experiences, and advocate for a better system. Certainly with the NDIS we need to do this, and I need to continue, because it is not working.

Naturally, I took up the cause of representing the families of Macarthur who fell through the NDIS's gaps. That includes families who themselves might have disabilities, those from a non-English speaking background and those whose children require constant care and attention. Too often these families share with me their experiences of systematic failure and systematic delays. Recently I had contact with a family who needed their home modified for their child with severe cerebral palsy. They have spent three years trying to get the system put in place and still have nothing done. This needs to change and we need to act urgently to improve the NDIS for all these families.

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