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: Friday, 21 December 2012 10:59:31 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.

Our son is 27 years old and severely multiply disabled (CP, profound ID, epilepsy, visual impairment, wheelchair dependent). He has always been at the mercy of wait lists for services, including funding availability for equipment and attendant carers (he needs 2 due to his high support needs). He relies on a Disability Support Pension for all his needs and 75% of this goes to residential fees for a CRU and the rest to day program fees and CRU costs. He comes home to us (his parents) 3 days per week and we manage all his high care needs without support during this time - we are not eligible for services as he is in a CRU. He is in a CRU because the system could not assist us to adapt our home and provide funding for the 2 attendant carers able to manage his unpredictable behaviours and physical needs. Prior to our son accessing a CRU, DHS provided funding and OT support to set it up to meet his needs ie with ceiling tracks, a safe area, adapted bathroom and hi-low bed with safe high mesh sides. These things were never approved for us while we had him at home. If they had been he would still be with us today. We are not in a financial position to be able to pay for all our son’s needs forever. Currently we pay his chemist bills, clothing costs, medical costs, additional travel and specialised vehicle costs.

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, People with disability/family will influence the types of support and services offered

The most important services for the NDIS to provide are:

• Equipment and home/vehicle modifications, Recreation and community access, Flexible in-home/outside home respite

I support the introduction of the NDIS.

It’s the only answer for people like our son to get the support and services needed to live life without waiting forever for aides and equipment, communication supports and timely access to services when needed.

I agree for my submission to be made public

Regards,

Mrs Heather Liesis