Impact of degenerative disease on family support

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: Monday, 7 January 2013 9:57:59 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.

There are not enough resources to go round. We are coping at the moment but a change in our youngest’s health , which will happen as he has a progressive, degenerative disease will change all that. Help is often not available until months after it is needed. Friends are getting no help at all, have more than one child with a disability and often have health issues themselves. Those that get help often get less than they need. Some support workers and their organisations are old fashioned in practice and do not seem to know or understand the disability service standards. There is a huge gap in high schools where kids do not get the funding or support they need. The system needs to see and help families as a whole, assist them in staying together.

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, People with a disability can plan their lives and pursue their goals and dreams

The most important services for the NDIS to provide are:

  • Therapy and allied health services, Equipment and home/vehicle modifications, Flexible in-home/outside home respite

I support the introduction of the NDIS.

We need more integration and support for people with a disability and their families. Parents are being pushed to breaking point. It will be comforting to think our children will still be looked after when we have died.

I agree for my submission to be made public

Regards,

Mrs Rebecca Heeschen