Support for son with undiagnosed genetic disorder

From:

To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Wednesday, 23 January 2013 10:43:16 AM

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.

With an undiagnosed genetic disorder, there is no funding pool for us in the leftover bucket. While I have been fortunate with obtaining aides for my son to date, I feel in his later years it will be more difficult.

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

  • Ensure support and equipment is available when needed,
  • The ability to receive services when needed and in the way that suits the person,
  • Increased ability to coordinate services to suit the “whole” person/family

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.

To ensure my son & family will continue to receive the support that is required throught his and our lives.

I agree for my submission to be made public

Regards,

Mrs Amanda Kokolis