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, 22 December 2012 12:27:21 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.

We seem to fall between the cracks. No-one seems to be able to help us. My daughters’ syndrome doesn’t seem to be covered by anyone. We know of families with the same syndrome who get carers allowance and/or carers pension. Yet other families who don’t qualify? Doesn’t make sense. I can’t get full time work, because I need to take care of my daughters’ needs ( appointments, days when she cannot attend school as she is too il, emergency department visits etc ), but we have huge medical bills. So I have to work 3 casual jobs to try to make ends meet. That means that - ( apart from when I am taking care of my daughter ) I don’t see my other children or my husband. I work early morning, late night and all weekends. If we could just get a little support somewhere it would help.

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

• The ability to receive services when needed and in the way that suits the person,
• Minimising the number of times people have to tell their story in order to get support,
• Removal of age barriers to services for children

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.

I think that there needs to be support for families early on. Sometimes that early intervention could make a huge difference. If we had had help earlier on in my daughters’ life then she could have had the therapy she needed, then she wouldn’t be struggling like she is now. She is 32 months behind in her schooling, because of missed time off school. Her muscles may not be as deteriorated if she had access to physiotherapy earlier in life - so she wouldn’t need to be in the wheelchair when we walk any sort of distance ( she can’t even go shopping for a short while - it is too much for her ). It puts a strain on the family, as everything we do has to be planned around her illness. Someone has to stay home with her, while the other does the shopping ( or other errands )or outings with the rest of the family. We never spend any time together as a whole family - but if we had access to help, equipment etc then maybe that could change.

I agree for my submission to be made public

Regards,

Mrs Anita Audrain