From: Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 11:56:25 AM
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.
It is very difficult when there is a severely disabled child without a comprehensive diagnosis. Funding was obtained through Autism Qld, however all that money was spent on speech therapy, occupational therapy, physiotherapy and a psychologist. My granddaughter has since deteriorated badly and her neurologist has advised to stop all those therapies as they will not now benefit her. My daughter has had to undertake an enormous amount of research in the middle of the night regarding what best would benefit her daughter. If there had been adequate consultation between all the doctors and specialists and then a co-ordinated approach to her ongoing therapies and needs and advice and help on how to obtain these, the disability system would have made a very positive impact on the whole family.
The main features of the NDIS that will make a difference to the community are:
Ensure support and equipment is available when needed, The ability to receive services when needed and in the way that suits the person, Minimising the number of times people have to tell their story in order to get support
The most important services for the NDIS to provide are:
Equipment and home/vehicle modifications, Support for families and carers, Case management, planning and coordination
I support the introduction of the NDIS.
I have a severely disabled granddaughter. She has numerous disabilities including mental retardation, severe epilepsy, autism, metabolic issues and low muscle tone. She is almost six years of age and has lost all speech. Communication is very difficult as we don’t know how much she understands. Medication time is an absolute nightmare each time it has to be given each day. I know my daughter and son in law are living on the edge and I fear my daughter will have a complete breakdown soon. My granddaughter requires one on one care twenty-four hours a day but they have two other children who miss out considerably. My daughter has psoriatic arthritis and is often in pain trying to cope with her disabled daughter who can’t be left alone for a minute. My daughter could really benefit from lots of home help, aids for her daughter (eg she mentioned a special chair which would cost over $600.00). Through the assistance of the Special School my granddaughter now receives nappy supplies and her parents are grateful for this, however she hadn’t even been told she was entitled to that by Disability Services.
I agree for my submission to be made public