National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 114

deeply sorry about my daughter Laura who was born with major disabilities (and abilities) in 1986 and died in 2009 - aged 23 years.

I am writing to making a submission to the NDIS review.

As background my daughter Laura was born with major disabilities (and abilities) in 1986 and died in 2009 - aged 23 years. During that time I had constant experiences in managing her care. I have also undertaken research and policy work in the disability area.

To develop a sustainable, effective and efficient system of disability support, my submission is that two things are needed. Sadly, neither of these appear clearly in the recommendations of the current review.

1. Needs to be person centred -

The model developed by In Control is an excellent starting point - an annual meeting of the person with the disability, their family, loved ones and services, setting goals for a 12 month period and reviewing and then re-setting. Everyone works out at the planning meeting what their contribution is to the goals. In this approach an NDIS provider will help fund the annual plan but will not need to set a dollar amount to the family - high stakes meetings with carers where an annual amount is allocated can be dispensed with.

2. Phasing out ‘for profit’ services -

it is a disaster and will continue to be so. As has been the case in child care and aged care. A ‘for profit’ motive reduces resources put into care and service, inflates prices, reduces quality and opens itself to criminal enterprises. Making services community or government based reduces the tasks and costs of regulations as there are strong accountability measures in place.

Happy to be contacted.

Yours sincerely

Dr Tim Gilley JP