Support for family of child with Rett’s syndrome

From: To: Community Affairs, Committee (SEN); Subject: Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 10:55:55 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.

My partner has a grand daughter with Retts syndrome, she is 5 with normal intelligence but a body that does not work for her. Her young parents do not have a steady income stream due to the time it takes to care for their daughter.As primary carers life is tough emotionally and physically, not to mention financially. If they did not have to worry about money life would be a lot less difficult. Some equipment can be borrowed but they have to arrange charity functions for special things such as an eye gaze sensitive computer, $25,000 so that they can communicate with their daughter locked in her body.

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

Ensure support and equipment is available when needed, Better access to mainstream support and services, The ability to receive services when needed and in the way that suits the person

The most important services for the NDIS to provide are:

Therapy and allied health services, Education support (technology/services/equipment), Support for families and carers

I support the introduction of the NDIS.

It will give a voice to the disabled, who,through no fault of their own have been side lined too long by a community that does not think about such things until they are directly affected. Here is a chance for the community to care for those less fortunate than themselves. You or I could be struck down at any moment and need medical care.Most of us are insured, why not insure those whose life is sometimes not worth living without adequate care and loving support.

I agree for my submission to be made public

Regards,

Mrs Lynda Young