NDIA Accountability Project

Limiting choices for people with severe sensory, intellectual and health disorders

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: Wednesday, 26 December 2012 9:26:42 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.

Too many NGOs all with separate rules and guidelines and objectives. Whilst each organisation would believe they have the interests of the client (probably not the family) at the core of their hearts, unfortunately the delivery of their own service is diluted by their own ability to fund their guiding principles. I am not saying that any of them are “crooked” but they are all too small to deliver their own “grand design” this leaves the leader of the charge or “supreme advocate” with a huge task. The co-ordinator of all the dribs and drabs of services and “encourager to keep going” is me. I am the “supreme advocate”. All of my friends are “supreme advocates” -why are we all inventing the same wheel? I work full time to support us and I advocate full time and I care/nurse full time. I need some sleep please.

Main features of the NDIS that will make a difference to the community:

  • People with a disability can plan their lives and pursue their goals and dreams,
  • Minimising the number of times people have to tell their story in order to get support,
  • Older parents and families will not worry what happens when they can no longer provide support

Most important services for the NDIS to provide:

  • Therapy and allied health services,
  • Flexible in-home/outside home respite,
  • Positive behaviour support and psychological services

I support the introduction of the NDIS.

I must say that limiting the above to 3 choices for a person with severe sensory, inTELLECTUAL AND HEALTH DISORDERS was unfair and forced me to leave off very necessary options which are currently met and I hope will continue to get the minimal support that they presently receive.

In answer to this question I am tired of running a service and doing all the thinking for everyone else because we all walk such a fully stretched tightrope that I cannot afford to let go myself or let any of the support slacken their grip even momentarily. I used to have a life - I know what I have lost. My daughter has never known a good life - she deserves to experience what life can offer and share what she has to offer.

I agree for my submission to be made public

Regards, Mrs Joan Jenkins