From:
To: Community Affairs, Committee (SEN); f
Subject: sub930Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 1:57:35 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.
My child is profoundly deaf and has Down Syndrome. I had to research support services when he was young as no one told us about anything. When he was admitted into hospital repeatedly (every 1-2 months for respiratory problems for his first 4 years), we were told there were no support workers available. We had very little family support and another 2 young children to care for, so our work and income was greatly affected. We had very little sleep for many years. When I researched and organised some funding assistance, I was only permitted to use funding for certain activities or equipment. (this was much appreciated but not always my son’s most particular pressing need) Over the years (14) we have had 1 to 3 different case managers annually, who we have to retell my son’s history to (this is always distressing as they want to know all the challenges and difficulties your child presents and I prefer to live life focussing on the rewards and positives; as the difficulties can b e very great some days.I am always unsettled for a few days after these interviews as I have to “get over” thinking about negative things about my child.) Recently we had a review of support agencies, and we were told our lovely carer who had been coming for about 3 years could not continue unless she worked 16 hours with the new agency(she already had a fulltime job). Replacement carers have not been anywhere as good and we are on our 3rd carer in just over a year. My son takes ages to get used to any change and it has been hard.
The main features of the NDIS that will make a difference to the community are:
Increased ability to coordinate services to suit the “whole” person/family, Removal of age barriers to services for children, Older parents and families will not worry what happens when they can no longer provide support
The most important services for the NDIS to provide are:
Therapy and allied health services, Education support (technology/services/equipment), Flexible in-home/outside home respite
I support the introduction of the NDIS.
All of us are going to be potentially affected by Disability through having a child with a genetic condition affecting their development, to having a family member with a head injury following a car accident to having a stroke in our old age . I believe we need to look after all members of our society.
I think allowance for making support specific for each individual/ family is much more effective in getting better outcomes. Families will feel more empowered through being able to have more of a say in what happens with their support. Feeling helpless about someones disability and not having any control over support is enormously depressing and energy sapping. Particularly when your own ability to financially support has been dramatically affected and you are unable to ever get a break from caring or worrying about your family member.
If anything can be done to ensure we will not worry about our family member’s future, this would be a wonderful thing.
I agree for my submission to be made public