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: Saturday, 22 December 2012 1:01:25 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.
Disability equipment is expensive, but essential, and currently only partially funded. It means - Correct body position which in turn means: -Longer term physical comfort for my son
- less surgical intervention
- safer positioning for eating and less risk of aspiration, again:
- fewer hospital admissions and better health
Currently, pinned to my fridge is a list of fifteen pieces of equipment my son needs. He’s due to start school in 2014, which means the equipment borrowed from his early intervention provider needs to be returned and replaced. SWEP will only provide funding for one of each item though. An example: Flamingo toileting chair cost $1995.00 X 2 $3990.00 (1@ home, 1@ school) Less SWEP contribution $1000.00 (only fund 1 of each item) Shortfall = $2990.00 This is just one of the items on our list. Others include a support garment which costs in excess of three thousand dollars, but SWEP no funding towards, standing frames, seating for the class room… It’s overwhelming. Chasing ‘top up’ funding is humiliating. It’s become my full time, unpaid job. This means - I’m unable to work full time.
- I’m unable to contribute taxes.
- I’m unable to contribute to my own superannuation.
Our financial future is bleake to say the least. Our family tried not to burden the public purse or the charities that provide the gap between government funding and the actual cost of items (often thousands of dollars). We spent the money we’d saved for a house deposit to buy essential equipment. This turned out to be a stupid, idealistic decision. We now have no financial back up, we’re caught in the rent trap, (so have no prospect of modifying a bathroom for our long term back health, and my sons dignity), and are struggling on one income. This stress compounds the already significant concern of who will look after my child when we’re unable to. As parents and carers of children with disabilities, we battle and sacrifice to support our children on so many levels. From true inclusion and support in schooling (so that they may be educated and contribute to society), to their often significant medical needs, to something as ‘simple’ as access to events. This all pales into insignificance when compared with the effort my son expends every day just to hold his head up. He deserves support, and to be recognised as a valued individual, not a pile of paperwork to be sifted through with a furrowed brow.
The main features of the NDIS that will make a difference to the community are:
Ensure support and equipment is available when needed
People with a disability can choose the types of support to use, People with a disability can plan their lives and pursue their goals and dreams, Older parents and families will not worry what happens when they can no longer provide support
The most important services for the NDS to provide are:
- Therapy and allied health services
- Equipment and home/vehicle modifications
- Support for families and carers
I support the introduction of the NDLS.
It will give my son dignity as he grows. It will allow me to mother him rather than manage him.
I agree for my submission to be made public
Regards,
Ms Nicky McDonald