NDIA Accountability Project

Cerebral palsy and epilepsy: challenges in accessing therapies

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, 21 December 2012 4:51:11 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.

The costs of physiotherapy and other essential therapies for Connor are enormous. The cost of wheelchair and assorted other items necessary to even be able to teach Connor to stand and talk are out of the question. Connor will never be completely independent and the cost of caring for him on a daily basis outweigh the small amount of support currently provided by the Government.

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

  • Ensure support and equipment is available when needed,
  • Increased ability to coordinate services to suit the “whole” person/family,
  • 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,
  • Support for families and carers

I support the introduction of the NDIS.

Connor was born with severe cerebral palsy and epilepsy. He cannot walk, talk or communicate. He is wheelchair bound and will probably never walk. At this stage after 18 operations, he may finally be able to stand with the help of a standing frame. My daughter who is Connor’s mother works hard to keep off the single parents payment and as a result Connor spends a lot of time with me as I can work from home. We have 2 hours of respite a week, however the respite worker is not allowed to feed Connor (who is peg fed) nor lift him, so I need to be here at all times. Next year, Connor will start at special school and hopefully will have access to more physio and other therapies which currently we cannot afford.

I agree for my submission to be made public

Regards, Mrs Linda Montgomery