From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 11:07:36 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.
My son is 13 years old and has Neuro migrational disorder a rare condition that is not genetic and is not well known in australia. Ever since my son started to walk at 5 years old he has not fitted into any one service provider and there is no respite services availlable to cater for children like my son as he can, is, was:
Geographically in the wrong area Can walk Is too high needs Isn’t high enough needs One on one supervision 24 hours per day for his own safety
I applied every time there was a DSQ funding round for recurrent funding and was knocked back time and time again, I had to ring the number on another reject letter and ask them what they class as high needs as my son is up there with the children that need the funding for respite etc as he is a 24 hour a day 7 day a week job. My answer was I don’t make enough noise! I don’t think I should have to make a noise when we so desperately needed funding to help stop me from burning out which ultimately did happen.
I often wonder what and wether the nameless, faceless people who sign the letters, in there big offices in Brisbane have had experience looking after a special needs person with medical needs and if not what gives them the right to say who is high needs and who isn’t. (It has something to do with the uni degrees they have and not the life lessons learned). There should be more parents like myself working with the politicians, to make sure this is a fairer system for all, not just the select few.
We as parents have enough to worry about with the health system the way it is if our children need medical intervention and there being no funding for respite, let alone is there going to be any funding. You have no idea what it’s like when you actually deserve that little bit of respite you do get. It is a chance to catch up on house work, paperwork, sleep
Hmmmmmmmmm myself as a single mum should not have to degrade myself time and time again just to get a scrap of funding to help give my son quality of life which is what we as “normal people” take for granted.
I’m told the system is a fair one but how can it be when there’s a change of government and everyone runs for the hills as there is no funding for disabilities. I sent a huge email to my local member to get his support for the NDIS and he wasn’t at all helpful!
It is all good and well to have Ds respite houses but the majority of them have older clients in them and this isn’t safe for our children, I know parents who can give you horror stories about respite providers, but when you have no choice and you need the break what can you do?
There is a lot of parents like me that have no support system because when you have a high needs child you are a leper not even family will help you not in an emergency not ever and friends disappear from your life very quickly.
We as parents keeping our children in home are saving the government millions of dollars and I think it’s time for the government to step up and help us out.
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, Removal of age barriers to services for children
The most important services for the NDIS to provide are:
Equipment and home/vehicle modifications, Flexible in-home/outside home respite, Crisis and emergency support
I support the introduction of the NDIS.
It is hoped by us as parents that as we age the funding will be there to help our children live as normal a life as we can give them.
I feel the NDIS and its principles are going to work for my family especially as he gets older and I become less able to care for him.
We will be able to choose the in and out of home respite Carers we want and not just who is available through whomever.
For the first time ever we will have a say in what happens with our children and who looks after them. Equipment is an important part of our lives and is soooooo expensive most of the time way out of my reach. So it boils down to us as parents not being able to care for our children the way they deserve to be.
I agree for my submission to be made public