NDIA Accountability Project

Down's Syndrome diagnosis and lack of therapy funding

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 11:33:17 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. it is unfair and does not provide enough funding for a mother like myself with 5 children with the youngest been diagnosed with many health issues and Trisomy 21. I am unemployed and unable to provide funding for my daughter for private therapies and medicals and the public system has a very long waiting list.

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,
  • Better access to mainstream support and services,
  • Better access to education and work opportunities,
  • More opportunities to participate in the community,
  • More employment of people with disability and less reliance on social welfare,
  • More rights for people with a disability,
  • People with a disability can plan their lives and pursue their goals and dreams,
  • People with disability can choose who comes into their home,
  • 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,
  • Minimising the number of times people have to tell their story in order to get support,
  • Less red tape, with planning done locally by people who know their community,
  • Access to reliable information about support options,
  • Removal of age barriers to services for children,
  • People with disabilit y/family will influence the types of support and services offered,
  • 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,
  • Education support (technology/services/equipment),
  • Life-skills,
  • Employment support,
  • Support for families and carers,
  • Case management, planning and coordination

I support the introduction of the NDIS.

I have a beautiful daughter who has been diagnosed with Down’s Syndrome and who also faces many health problems.

I agree for my submission to be made public

Regards, mrs iman el-cheik hussein