National Disability Insurance Scheme

Mathew Dexter

Biggest Issues:

My wife and I have a son Riley who is a little over three years of age. He was diagnosed with ASD from moderate to severe when he was 18 months of age. Yet we are still on waiting lists after all of this time for him to receive early intervention. The gross lack of funding for people with ASD is apparent as in QLD there are the same number of people with disabilities yet there budget grew 62% and SA's only grew 4.5%, Mr Rann has never attended a Disibility event of any kind and this states clearly that he is not interested in Disabilities full stop (I could say much more but this is about our son). We have decided to take our superannuation out on Compassionate Medical grounds to provide our son with the Early Invervention he requires for him to have hope of one day recovering from the disorder to a point where he could be in a mainstream school. In doing this our funds becomes income considered from the ATO, this would also mean that we would lose all of our Family assistance which now is only just enough to survive let alone pay for any therapies. What do we do, we are crying out to save our son yet the hand that feeds us, bites us also not to make it possible. We are taking this on ourselves and not asking for a handout but we have the power to save the goverment many thousands of dollars in the long run but we cannot survive without our family assistance. APRA only release our super based on paying for therapies only, yet the ATO call this general Income how is this so.

How my life could be changed by an NDIS:

Its very obvious how this scheme would help but we need help to have an exemption to be able to use our super for the purpose it was intended for, for Riley's therapies and to have our super not classed as general income because in now way will it be used for anything else. At best with the amount of super we have we would only get 9 months worth of very expensive treatments yet he really needs two years worth.....please we are begging you or someone to have the general income ruling changed or exempted in our case to save our son. With Many thanks, Mathew and Renee Dexter

Anne Vetter

Biggest Issues:

Hi.We are the proud parents of 3 teenaged children. Our middle son attends Gympie Special School & graduates in 2011. We are looking for an alternative to the sheltered workshop employment. We are looking for inclusive activities for our son, post-school rather than being 'herded' into a sheltered workshop: looking to small enterprises for him; low start up costs (we have a mortgage and two other children). Planning is DIFFICULT as we don't know whether he'll be one of the LUCKY FEW to 'win' a transition from school financial package. I've been told,that he's classed by the Dept. Communities; as 'high needs'; this is a strong indicator of his chances of success for a package; however,we can't be sure. I was considering a small baking business from home; but would have to spend hundreds for our kitchen to be renovated to local Council standards. I also looked into a mobile coffee service; but start up costs for a second hand van were not far short of what we currently owe on mortgage! The bottom line: we don't know if we're going to win the Q'ld Govt Lottery and our son be supported financially; so all the dreaming makes planning almost impossible. The Govt's inclusive workshops are a source of frustration:attendees are employees of agencies;& a small, smattering of people with disabilities; & parents.why aren't these workshops held at a time(evening; or working breakfasts); when business operators; members of Chamber of Commerce; Local Govt Aldermen; etc. can attend and hear the Inclusive-Dream. These workshops are a waste of taxpayer resources. An acquaintance paid $7,000 for her wheelchair; and communication aids for the non verbal cost in the vicinity of $5,000. FREE in NSW? Our society publicly funds treatment of self inflicted diseases such as those related to alcohol/drug/obesity/diabetes; so why the delay in a no fault national insurance scheme for the vulnerable of our society.

How my life could be changed by an NDIS:

I would hope that our life would be changed in that we wouldn't have to continue paying for speech therapists; etc., our son would have a guarantee of support to lead an inclusive life style, post school (not just in the matters of sport & recreation); but a real Mon-Fri lifestyle; of earning some cash; wide variety of accommodation choices once John and I can no longer care for him in our home; or we die; or Joe chooses to have a more independent life style. (This accom could include a 'granny flat' built on any future properties owned by either sibling; or an attractive caravan; that can be towed from one parent/sibling property to the other; in other words; real options!!) Our family has forked out thousands in paediatric; paediatric neurologists'; pathology; medications; etc.. This load was made somewhat easier once our son had a health care card; but it was sometime after his first epileptic seizure that we were 'led' to a health care card. Furthermore, we had to resort to continence aids for some 12 years to assist him; & only found out about the MASS scheme a year or two before he no longer need them. Until then we were pay in the vicinity of $70 per week for them. All this on my husband's income; with 2 adults and 3 children (now teenagers) to support; and no extended family within a 3 hour radius for moral support. There's a perception amongst (reluctant) recipients of service supports that the chequebooks automatically open for those physically disabled; i.e. when the disability is really visual; but for those suffering with intellectual impairments and other not so visible disabilties; they have to beg; and waiting lists are much longer. I wish I didn't reveal so much personal detail of my son's; however, I have done so knowing that confidentially will be honoured; and also I've done so; to try and 'paint the picture'.

melissa moodie

Biggest Issues:

the biggest issue is discrimination in obtaining employment. How are people with disabilities supposed to get work with web sites such as fit2work.com.au. By the way I found this at a major public hospitals employment internet website as a link. The hospital is supposed to be an equal opportunity employer.

How my life could be changed by an NDIS:

My life would be changed by this insurence scheme as my disability is eposodic and I am working full time. This means if I get sick again I could end up on the dole if I'm lucky which is not enough money and you are harrased. It would encourage people to not be afraid of working, also it addresses the financial implacations of discrimination

Deb O\'Neill

Biggest Issues:

access to specialist services that are affordable. long waiting lists for wheelchairs & other equipment RESPITE and lack of it.

How my life could be changed by an NDIS:

Be able to afford private therapist so I don't have to wait to access services at the hospital. Purchase equipment that you need rather then put up with sub standard equipment we have to accept as we have no other choices.

joanne reeves

Biggest Issues:

My granddaughter has cererbal palsy. This disability places a great strain on the family's emotional and financial resources. Not to mention all the other areas of their lives. There are limited therapies available in the Mittagong. My daughter has to go out of area to access services.

How my life could be changed by an NDIS:

It would ease the life long burden on the family income. May be, just may be more support services would be made available in our area.

Lorraine Hansford

Biggest Issues:

I am a Carer for my husband (Bill) who has Becker Muscular Dystrophy. Since being diagnoses in Mid 1980 it has been extremely difficult in accessing vital help with Services, much needed equipment and support. Becker M.D is genetic, therefore no assistance was initially given, however if such a scheme as the NDIS that is being proposed was available,the enormous difficulties encountered could be lessened.

How my life could be changed by an NDIS:

National Disability Insurance Scheme would be a tremendous breakthrough in allowing all people with a Disability to access the essential support,care,therapy,aids, equipment and home modifications. Currently just trying to access vital help and assistance with all the different Gov't Depts and Agencys is a difficult and daunting exercise and thats on top of the Disability that is being coped with. Please support the NDIS that would provide cover to all, as believe me, people do not intentionally go out and find their disability.

Tracy Greenhill

Biggest Issues:

My dear friend, whom I have known for 25 years has a gorgeous boy named Patrick who is cheeky, fun loving , kind and just happens to have been born with downs syndrome. You could not meet a family more down to earth, so loving, supportive and dedicated to helping others in their community and it is devastating to watch them crumble under the burden of wondering what will happen to Patrick when they are no longer able to care for him. They should not have to live with the constant fear for Patricks future, but should instead be concentrating on family life and dealing with the here and now. This could be you or me. An accident could put us all in the same position as my beautiful friend. None of us have a crystal ball to predict the future. None of us know which of our loved ones will be affected by mental illness or some other disability. We need to act now and provide support for everyone in our community, now and in the future because it might just be you or me who is trying to navigate our way through these situations and fight for the rights of our loved ones in the future.

How my life could be changed by an NDIS:

Imagine the fear of finding yourself in the life of so many Australians and not knowing how you are going to care for your child, partner, parents or loved one who has acquired or was born with a disability. Money, services,support are what everyone needs. No one can take on this burden by themselves but sadly this is how it is today. We talk about looking after our community and we want Australians to look after each other but this is simply lip service if we don't put services in place that can support this idea. I am not stupid enough to believe that governments can provide a bottomless pit of money to support the growing demand for these services but by introducing a Disability Insurance Scheme we are being empowered to help ourselves. No one wants to live on handouts and no one who is caring for someone with a disability wants to beg for money, services or support. Make a change and watch how Australians become more supportive of each other. We can once again become a nation that cares for each other. Make people feel supported and understood and watch how they in turn support others. Surely this is what we want for our future.

Adam Salverson

Biggest Issues:

I have suffered from Cystic Fibrosis my whole life (38 years). 3 years ago I had to stop working, which places an enormous burden upon my wife who has to support me. I receive very little support from the government in any way. Along with Cystic Fibrosis I also have Cystic Fibrosis related Diabetes and am now going through the process for a Lung transplant at St Vincents Hospital. I can not receive a disability support pension as my is working and over the threshold, I am willing to work but find it hard, CRS Australia, a Government funded program for the permanently sick and disabled to try and get work won't even help me! As if living with a disease like this is not enough.

How my life could be changed by an NDIS:

It would first and foremost for me be recognition of my disease I didn't choose this, it chose me. I would love to have a health care card so I could get cheaper or free prescriptions, as I always fall just a few dollars short of the PBS threshold. Sick and disabled people who are looking and willing to work should have access to Government programs, it's a disgrace that such a scheme is means tested.

Mandy Barro

Biggest Issues:

Our 11 year old son Patrick has Down syndrome, my husband Lu and I constantly worry about his future, who will care for him when we no longer can? This is a huge fear amongst all our friends with children with a disability. Our precious children that we love and care for could become extremely vunerable when we are gone.

How my life could be changed by an NDIS:

It would definately give us some peace of mind, to know there would be a scheme in place to support and protect our most vunerable. I know I would sleep better believing Australia has a sense of social justice, it would change carers lives.

Allan Nash

Biggest Issues:

For the past eighteen years I have supported my daughter and son-in-law in their attempts to secure a dignified and productive life for their son who has severe intellectual & physical disabilities, limited funding has restricted their ability to quickly access many necessary support services and equipment and an inordinate amount of time has been devoted in our attempts to access these necessities via various Government agencies, sometime successful and sometimes frustratingly unsuccessful but at all times pathetically degrading due to the well established begging system that has evolved over time as overstressed parents/carers plead with Government controlled organisations for help in acquiring much needed mobility supports, therapy services etc. Involvement with many others caught up in this bureaucratic nightmare demonstrates just how prevalent the “squeaky wheel” system of administration is as overworked and frustrated agency personnel attempt to service demands that are clearly not supported by adequate financial resources.

How my life could be changed by an NDIS:

When parents are first confronted with the additional challenges of raising a child with a severe or profound disability reaction varies but there are some constants, the need for some emotional support, the need for knowledge of how to address the specific additional support needs and most often the impact of what can be perceived by the parents as some kind of failure, these issues in themselves are traumatic enough and over time most parents will adjust in some way to their specific challenges. Current disability support mechanisms only serve to burden them and add to their sense of helplessness as they try to provide for their precious child. A National Disability Insurance Support scheme would give immediate access to all supports required and as a consequence allow parents/carers to focus on the more personal aspects of care for their loved one. In my opinion, if we as a society wish to reduce the nations financial burden in the support of people with disabilities we must invest in a support system that enables each individual to achieve their full potential and become productive members of their communities, disability should not be seen as an excuse for allowing unnecessary deterioration of peoples physical capacity, I believe that with proper support many current high support needs people could have been living fulfilled and contributing lives.