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: Sunday, 20 January 2013 1:40:26 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.

The system does not provide helpful services or supports - Local Area Coordination visits are mostly social and irrelevant to addressing our needs; rarely if ever can LAC’s provide helpful answers to our questions regarding help to access community recreation or to access appropriate out of home respite or provision of enabling information to assist me in my caring role, or to advocate for us eg: workplaces, employment support agencies, Govt offices. Appropriate Out of Home respite services are almost impossible to find; the system does not adequately subsidise these services. The one we have been using is closing down this year due to financial difficulties - and no one in the disability sector has been able to advise me of an appropriate alternative. In Home respite involves a large number of different unknown workers who due to their inexperience of working with adults with autism most often create stressful situations that the family have to then resolve - sometimes th is can take 6 months or more. DSC previously provided $3000 annually for us to find a Community Support Worker - strict conditions were placed on what activities could be accessed. The funding paid just $16hr to workers. Due to autism, needs someone who will be regular and whose interaction will be ethical and wise to his need for trust and security and understanding particularly of his communication needs - the outcome has not always been good for - often creating stressful situations that can sometimes take 6 mths or more to resolve. Given the system has been unable to provide us with appropriately trained and reliable workers to assist to access community activities such as exercise, swimming, alternative special- interest education options, we have had to decline the funding. previously worked in open employment for 12 yrs he was then unemployed for 4 yrs and has now returned to work at Good Samaritan Industries - but he likes it. The hetoric o f ‘giving people money empowers people to choose their own services’ becomes impractical and unacheivable when there are no appropriate services to choose.

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,
• Increased ability to coordinate services to suit the “whole” person/family, Access to reliable information about support options

The most important services for the NDIS to provide are:

• Support for families and carers,
• Flexible in-home/outside home respite,
• Case management,
• Planning and coordination

I support the introduction of the NDIS.

In Western Australia the present system does not work - hugh amounts of money are spent on too few people - and it appears to me there is a lot of wastage in trying to prop up Systems programs that have become unhelpful. Some (so

called) not for profit organisations are helpful, but many have funding provisos or staffing problems that prevent access. It seems to me that people with an intellectual disability are being sidelined by the very articulate and persuasive arguments of people with other disabilities.

I am hoping the NDIS will a) bring a system that interprets equity in a more inclusive way than the current one; b) listens respectfully to family carers acknowledging their skills and experience as important to this particular individual; c) fund and otherwise ensure appropriate services and supports for people with an intellectual disability and their carers are available as needed; d) fund or otherwise support the need for an appropriately trained and skilled workforce particularly in relation to communicating with people with autism; e) take account of the Western Australian experience of defining the separation between health and disability in terms of access to disability Systems Programs f) ensure front line coordination services are local; g) provide a ‘shop front’ style of local coordination where both the person with the disability, their primary carer and other relevant familiy members can visit to discuss appropriate issues and concerns - ideally this ‘shop front’ to be like a hub where information is available in all forms and where a few carers could gather when appropriate.

Due to my age and health problems I may not be as procactive as I used to be in seeking and advocating for needs - I know the current system would fail and his broader family and I am hopeful that the NDIS may provide a more adequate alternative.

I agree for my submission to be made public