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: Wednesday, 23 January 2013 3:57:10 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.
Having had a child with disabilities in not something most people are prepared for. Having a child with a rare medical condition and multiple disabilities is daunting for the parents as well as medicos and healthcare providers.
, our 2 year old son, was diagnosed at 3 months with Ring 14 Chromosome.
Diagnosis is very different from the presentation of symptoms as we have had to learn. A diagnosis is words on a page where presentations of symptoms are the ways the disorder presents for the individual and this is usually gradually and follows no set format. has epilepsy, scoliosis, microcephally, hypotonia, mental & physical delay, a gastrostomy, vision impairment, an ASD, and the list goes on. Caring for is a 24 hour job due to his health and physical issues.
The learning curve has been monumental and the time taken just for appointments and hospitalisations mind blowing. I do not have time to access a lot of the resources out there. Information is distributed in a bitty fashion that people like me cannot and will not access. I am told constantly, just fill in this or that form or make this or that phone call, but it is not just a form or just a call it is tens of forms and tens of calls and at the end was my effort useful? Sometimes yes, and sometimes no. I do NOT have the luxury of time to play around kowtowing to societal bureaucracy because we do not trust the disabled and those that care for them. It is time we began to understand that life for many disabled people and their carers is different from life for able bodied people and adjust the system to reflect this understanding and not expect the most marginalised to keep jumping through hoops that are too high.
The system does not work because there is no system.
The main features of the NDIS that will make a difference to the community are:
- More rights for people with a disability,
- Minimising the number of times people have to tell their story in order to get support,
- Access to reliable information about support options
The most important services for the NDIS to provide are:
- Support for families and carers,
- In-home care and domestic assistance,
- Flexible in-home/outside home respite
I support the introduction of the NDIS.
I support the NDIS because it must, on the face of it, be fundamentally supported. For a society not to have competent and complete support for its disabled members in this day and age is frankly quite arcane. We live in the 21st century and the way we treat our disabled is shameful. Australia, as with any other country, cannot stand up and count itself as a country that is unified if it
The reality is that life is harder, more time consuming and more expensive for most disabled people and their carers. We must set up a system that makes life easier for these people. A life that enables inclusiveness, acceptance, tolerance and understanding. A life that offers hope and fulfilment, not despair and drudgery, for all those involved. At the moment life is full of what-ifs and uncertainty, something that life with a severely disabled person offers up all on its own without the help of a broken , fragmented system adding to the mix. Please offer up a scheme that removes the unnecessary what- ifs and uncertainties and provides simplicity, continuity and security.
I agree for my submission to be made public
Regards,
Ms Anna van den Broek