Capability and Culture of the NDIA

Submission 67

My name is and I have a rare neurological condition called focal leg dystonia following a knee arthroscope for which there is no cure. This was diagnosed by my neurologist 18 months ago.

It affects my left leg and causes difficulty in wallking due to spasm and involuntary posturing of the leg. As previously very active it has had a huge physical and emotional impact on my life, requiring daily support.

I applied for funding through NDIS but was unsuccessful, despite a 10 page report from a neurophysiologist supported by my GP and neurologist. I felt that I was not treated on an individual basis and that the doctors and specialists who are the ones who are in the best position to know my condition were sidelined by a “ticking off the box” exercise whereby I did not fall into a category- ’‘the evidence provided does not conclude that your impairment/s result in a substantial reduction in functional capacity as defined by the NDIS access criteria.’’

It would appear that I am not ‘disabled enough’, yet I qualify for disabled parking (5years). Even with a physical and psychological component I question whether the NDIS assessors are the ones in the best position to make this decision and that the onus of proof needs to be given to the treating doctors.

Part of the decision was made based on ‘‘information does not indicate that all available and appropriate treatment options that are likely to improve the impacts of your disability have been explored’’. This was despite an extensive list of treatments that I have explored and the expense involved, yet apparently, I also do not qualify for early intervention due to the ‘longstanding nature of the disability’ which diagnosed just over a year prior to applying for NDIS!

I wholeheartedly agree that people with a disability need to be part of the NDIS qualification process and that everyone living with a disability be afforded some sort of support, particularly those with an incurable lifelong disability like mine.

Yours Sincerely