Rare genetic disorder and specialist care access challenges

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: Monday, 21 January 2013 8:00:41 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.

We are not receiving the type of support we need at the time we need it. Expecting people to fit into tight boxes does not give them the quality or quantity that is required to assist them. Our youngest has been diagnosed with a rare genetic disorder that involves the heart. He is almost 18 and will be in the adult system with us doing all the work of finding specialists and taking him to appointments.

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, 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:

  • Employment support,
  • Support for families and carers,
  • In-home care and domestic assistance

I support the introduction of the NDIS.

Because I believe it will strive to ensure that the current inequalities will be addressed and finally people will be able to live without the stress of not knowing if the life of the person you care for and your life will be worth living in the future.

I agree for my submission to be made public

Regards, mrs Wendy Maller