From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 4:19:00 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 have found up to now that many parts of the system are geared up for crisis situations only and if you appear to be coping ok you may be left and don’t receive the help you need.
My daughter was born with severe intellectual disability and more moderate physical disability. We have found that there is a fragmented system, little future planning, a lot of bureaucracy and red tape and a lot of hurdles for parents to jump. We are helping care for a person who does not change a lot in terms of needs. Time and time again we have had to tell our story and we don’t like being made to feel that we are asking for charity! We have felt that receiving important information about services, commonwealth funding programs etc has been ‘hit and miss’ in that the only way we knew about it was from other parents mentioning it to us in passing.
We have had to cope with the uncertainty of our daughter reaching adulthood so she wasn’t able to continue to access her respite option and we were faced with having to care full-time for her after having 50% respite from the age of 14. This uncertainty is hugely stressful on a family! We have been fortunate in that our daughter is now fully supported in a group home but that only came about through pressure from advocacy-there had been no long-term planning.
The main features of the NDIS that will make a difference to the community are:
People with a disability can plan their lives and pursue their goals and dreams, Increased ability to coordinate services to suit the “whole” person/family, Less red tape, with planning done locally by people who know their community
The most important services for the NDIS to provide are:
Equipment and home/vehicle modifications, Flexible in-home/outside home respite, Case management, planning and coordination
I support the introduction of the NDIS.
I want to see a national system where people are treated fairly across the country and hopefully the NDIS will alleviate differences across the states. I want parents and carers to feel that they are not in this alone- that they have the support they need when they need it with choice over who provides itand that if possible, the person with the disability can decide the important things about the support rather than being forced to fit in with a support agency. Hopefully the NDIS will be able to provide this support. Finally I hope the NDIS can help the people with a disability, their parents and carers feel that they are valuable members of society who can contribute without being made to feel they are less valuable charity cases.
I agree for my submission to be made public
Regards,
Ms sally shackcloth