SUBMISSION TO PRODUCTIVITY COMMISSION re THE NDIS

FROM: Beth Marchbank; Mother of 17 year old daughter with Down Syndrome; Consultant and Presenter in Disability Issues; Master of Social Science (Disability Studies); notice I put my carer qualification first.

I am writing in regard to the possible introduction of an NDIS to help meet the needs of people with disabilities throughout Australia.

I would definitely support such a scheme; if it resulted in:

1)	A sceme based on the principles of human rights for ALL PEOPLE including those with disabilities. 
2)	Enabling people with disabilities to have better access to education and employment; two areas where supports and access are severely lacking and in which families struggle constantly; 
3)	More funds available to meet the needs of families and individuals who experience disability every day in their lives.
4)	Support / help being available for those who care for people with high support needs who often currently get to the point where they can no longer carry on; due to the physical and emotional strains a family member with disability can bring
5)	Access to therapies which prevent further disability and allow people to have a sense of hope and progress towards more opportunity, better mobility; better employment prospects, better prospects for a fulfilling life; and would make the extra effort and care that disability perhaps less arduous;
6)	Support for people/ families to access the services and supports they need, and to choose services and supports to suit;
7)	Support for people to manage their funds and use it to the greatest benefit for their family member with a disability;
8)	Resources for all people who experience disability which inhibits their opportunities to have better access to experiences, education, recreation, social life, pursuit of interests, WORK, family and positive relationships like other non-disabled people in our community;
9)	The wider community believing that disability can happen to anyone, anytime; and that we ALL need to support each other and pitch in to assist to make the load more doable for all

And DID NOT result in
10)	 an “insurance scheme” where people had to prove their entitlement to funds repeatedly and deal repeatedly with a huge bureaucracy;
11)	The loss of existing services and supports which are already doing a great job; because some are;
12)	A scheme where families who already battle every step of the way for access to child care, home help, family support, education, recreation, social life, holidays,  and employment have to Battle even more.

I understand that for people who are compensable through the Victorian Motor Vehicle Accident Scheme people have had to take the department to court just to get the supports they need, to have access to therapies, home and personal supports to get on with their lives in a positive way; and which help prevent people from moving towards alcoholism, depression or suicide due to their situation. 
I am concerned about the assessment process for eligibility to NDIS funds.

People with disabilities are already “assessed ad infinitum, with families having to retell; what are often painful stores over and over;

We would need a scheme where assessment was done in conjunction with the person and their families to assess their real daily life needs for support and services; and for which they did not have to keep proving they had an extra chromosome in every cell of their body for instance which we have had to do in the past.

In conclusion; I feel very positive about the prospect of the Australian Community contributing towards helping their fellow Australians with disabilities have the more equitable access to opportunities of all kinds in life; but especially education, employment and supportive networks; but I have reservations if it turned out to be a big bureaucracy that gave people with their disabilities and their families and carers more grief.

Regards,

Beth Marchbank