NDIA Accountability Project

Grandson diagnosed with Angelman Syndrome requires comprehensive treatment

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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: Friday, 25 January 2013 4:08:38 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 have a severely disabled three year old grandson. He was diagnosed at one year old with Angelman Syndrome. Our family, but particularly my daughter and son in law, have been frustrated by the fragmented, complicated, underfunded and in some ways secretive assistance for disabled that operates in Queensland. In short the system is broken!

Much of the funding for treatment has come from the family creating severe financial pressure. In fact my daughter and son in law had to sell their house and relocate to a lesser suburb to create funding for treatment.

With comprehensive treatment there is a good chance that we can get my grandson to walk and to communicate. Access to and funding for the full range of treatment is crucial.

As his grandfather I am also concerned about his well being down the track. He is darling boy but who will care for him after we and his parents have gone? The NDIS is crucial to give people like my grandson the treatment they deserve and a quality of life going forward.

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

  • Ensure support and equipment is available when needed,
  • Access to reliable information about support options,
  • 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,
  • Equipment and home/vehicle modifications,
  • Education support (technology/services/equipment)

I support the introduction of the NDIS.

The current system, particularly in Queensland, is broken. As I understand it the NDIS will be appropriately funded and provide disabled people and their families/carers with the appropriate support.

Being a national scheme it is my belief that the confusion between Federal and State responsiblity will be eliminated.

An NDIS will allow disabled people to have the quality of life they deserve as Australian citizens.

I agree for my submission to be made public

Regards, Mr Greg Blair