NDIA Accountability Project

Lack of funding discriminating against daughter with Down Syndrome and Autism

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Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Saturday, 22 December 2012 6:54:33 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.

The lack of funding is directly discriminating against my daughter with a disability.

The funding appears to be provided to service providers who are more interested in their own agenda (ie renewal of their contracts). It is imperative that the funding reaches the housholds and is not absorbed by service provider not providing any services.

Furthermore, I find that support that is available has unhelpful criterias attached to their policies. For example, my child has Down Syndrome and therefore was not able to obtain the FACSIA funding when she was young. The frustrating thing about this exclusion is that our friend who has a child with Autism was able to access $12.000 in funding. We attended the same therapists and followed a very similar therapy plan. We had to discontinue therapy due to lack of funding. She also missed out on the Better Start Program by 6 months. My girl just turn 8 and it appears that she has the dual diagnoses of Down Syndrome and Autism. The FACSIA money would have been of great assistance. The financial assistance throught the Better Start Program is a total waste as most therapists have increased their fees to such an exent that I am more out of pocket now then with Medicare.

Schooling is another big big problem. Our children are not receiving the education they are entitled to or they are unable to attend school on a full time basis.

The NDIS has to cover access to health, education, housing and social and employment inclusion. Anything less and the system is too fragmented and we will, once more, rely on the state governments and the current system.

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 a 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,
  • 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 disability/family will influence the types of support and services offered,
  • Older parents and fam ilies will not worry what happens when they can no longer provide support

The Most Important Services for the NDIS

The most important services for the NDIS to provide are:

  • Education support (technology/services/equipment)
  • Life-skills
  • Employment support
  • Recreation and community access
  • Support for families and carers,
  • Accommodation options
  • In-home care and domestic assistance
  • Flexible in- home/outside home respite
  • Crisis and emergency support

I support the introduction of the NDIS.

If the NDIS will not go ahead, there is no future for my child. She will not receive the education that she requires for an independent life, she will not participlate in social activities, she will not gain meaningful employment and she is likely to live with us for a long time to come.

I agree for my submission to be made public

Regards,

Mrs Michelle Hannemann