NDIA Accountability Project

Living with Hereditory Spastic Parapalegia and accessing disability services

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: Saturday, 22 December 2012 12:21:22 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 rare disability that effects only about 1700 people Australia wide. My disability is called Hereditory Spastic Parapalegia (HSP). I am very mobility impaired. At the moment I require a walking stick and a motorised scooter to get around, I believe I will be needing a wheelchair in the near future. I was only diagnosed with this illness 5 years ago. Finding any information regarding this particular illness, what I should and shouldn’t do, what is available to me now and in the future has been very frustrating for me and my family. At the moment my sole access to any disability service has been Centrlink. Even though I am paid a disability pension because I have a problem with my legs, I had to stand in line with the able bodied people untill [sic] I got to the service desk, sometimes waiting for more than half an hour. The alternative for me is to use the Centrelink self help phone service with call waiting times more often than not being in excess of 30 minutes.

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

  • Better access to mainstream support and services
  • Increased ability to coordinate services to suit the “whole” person/family
  • Access to reliable information about support options

The most important services for the NDIS to provide are:

  • Therapy and allied health services
  • Employment support
  • Case management, planning and coordination

I support the introduction of the NDIS.

If there is any plus to becoming disabled later in life (50+) it would be that I have now experienced life as an able bodied person and a disabled person.

The quality of life for most disabled people, their family and carers is extremely poor! A National Disability Insurance Scheme will help improve that quality.

I agree for my submission to be made public

Regards, Mr Peter Macpherson