Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Wednesday, 23 January 2013 7:55:36 PM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

I’ve been a GP for 26 years and I’ve seen seen disabled parents and their carers struggle with the current system, with one or both parents needing to take time off or stop working completely to care for sufferers. Two years ago, our son was born with a chromosomal abnormality called ring 14. This is characterised by, epilepsy, severe global developmental delay, blindness, deafness, an ASD, feeding difficulties (he is tube fed), and severe scoliosis. He requires around the clock supervision as well as well a the constant juggling of appointments with many medical specialities and allied health services. For this reason, my wife no longer works and I only work part-time. As his condition is so rare, he does not fall into any recognised category and as a result, he is not eligible for many services even though he is much sicker than a child with say Down’s. just as importantly, we receive no help domestically.

The main features of the NDIS that will make a difference to the community are:

• Ensure support and equipment is available when needed, People with a disability can choose the types of support to use, Older parents and families will not worry what happens when they can no longer provide support

The most important services for the NDIS to provide are:

• Therapy and allied health services, Support for families and carers, In-home care and domestic assistance

I support the introduction of the NDIS.

This is a difficult question to answer as we do not yet fully understand what the NDIS will do. However, the current system is not working for many people including us and people with disabilities are continuing to suffer. From what I understand the NDIS will assess how disabled our child is and then allocate funds which we can distribute accordingly. This will help us as our child is very disabled indeed and the help we are getting now is only a tiny proportion of what he needs. If we were able to get domestic care for example, we could both go back to work.

I agree for my submission to be made public

Regards,

Dr Ramsay Sallis