NDIA Accountability Project

Daughter's genetic condition resulting in brain injury, global delay, epilepsy and cerebral palsy

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, 19 January 2013 11:06:35 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 current disability system is unable to meet our families needs. My daughter was born with a genetic condition that resulted in a brain injury, leading to global delay, epilepsy and cerebal palsy. We have been offered sporadic physiotherapy, OT and Speech therapy under the current system, which have had little benefit. Given the current understanding of brain plasticity, and the need for regular intensive treatment, it is no wonder that this treatment has had little effect.

We have pursued private options for initiating a home-based therapy system, which has taken my daughter from being unable to walk and talk to walking indepedently and conversing well over a two year period. We have had to fundraise in order to pursue the treatments that have been beneficial for her as none of these therapies individualised to her needs (FastForword computer program, Intergrated Listening System, Therasuit, and Assessment & program establishment by The Australian Institute for the Achievement of Human Potential) have been funded by any available disability support services. Even respite from having to sleep in with her because of night seizures has been something we have not been able to access.

In our experience, the current system does not promote the best possible independence and function for people with special challenges. It has not allowed our family to access the services that are specific to our daughters needs.

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

  • People with a disability can choose the types of support to use,
  • People with a disability can plan their lives and pursue their goals and dreams,
  • 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,
  • Life-skills,
  • Support for families and carers

I support the introduction of the NDIS. The NDIS will allow our family to make decisions based on what is going to make all of our lives more livable. I will also lift the burden of trying to fundraise in order to balance financial requirements for the best possible solutions for independence. It will allow us to choose the support that is relevant to us at specific times.

I agree for my submission to be made public

Regards, Mrs Kirsty Scott