National Disability Insurance Scheme

Angela Mortell

Biggest Issues:

I have been working for 32 years with children and adults with both physical and intellectual disabilities and have seen many families struggle to access equipment, services, respite care, transport and accommodation and the devastating effects this often has on the family. Sadly, many relationships do not survive the stress this places on them. I now have a seven year old grand daughter with cerebral palsy and her parents have an uphill battle to afford the equipment she and they need to be able to have a normal family life. They have just gone further into debt to buy a wheelchair accessible vehicle so that they can go on outings/holidays as a family. In spite of the fact that they have top private health cover they have ongoing out of pocket expenses for such things as AFOs, botox injections, special shoes, assistive technology devices, etc. She is a very bright child who has mobility problems which could well affect her future, if she did not have such determined and supportive parents. Their own health and relationship has suffered from the strain of caring for her and the constant battle to ensure she has the best medical and educational services.

How my life could be changed by an NDIS:

A National Disability Insurance Scheme would mean an end to the piecemeal delivery of services and funding which exists at the moment. So much depends on where you live in Australia, what contacts you have (in order to find out what IS available)and how strongly you are prepared to argue for your (or your child's) rights/needs. People who have a disability, their families and carers should NOT have to beg and plead for what they NEED to enable them to have the quality of life we take for granted. A scheme which guarantees the support and services each person needs would go long way to restoring dignity and peace of mind to people who have struggled for far too long!

Emma Preston and Terry Gordon

Biggest Issues:

my 10 month old daughter is in urgent need of many therapies and expensive equipment to help us improve her quality of life now, and in the future. i have now contacted nearly every support organisation in the latrobe vally and I am appalled that the only help I seem to be able to access is respite. the allied heath professionals at traralgon hospital are great, but are only able to offer limited therapys for my child, on a basis of once a month, wich is not enough to make a difference to her life. We are also trying to find a way of accessing a $7000 postural support chair that our daughter desperatly needs to be able to stop her spine deteriorating any further, and this chair will also enable her do develop a better range of fine motor skills and gross motor skills. but we need it now, and i am afraid with limited funding options available, and as far as i understand, long waits for supplements, i fear it will be too late, and the future costs for the care of my daughter will be increased.

How my life could be changed by an NDIS:

If we had a National Disabilty Insurance scheme, I think that it would make raising a child like my daughter Zoe a lot less frustrating, meaning that i am not likely to suffer from being over stressed. I would hope that a national disability insurance scheme would be able to cover the costs of regular physiotherapy from people with many years experience who may be the ones who make the big difference in my daughter's life - the difference between being able to walk and live independantly or be confined to a wheel chair and have limited life options. A national disability insurance scheme might mean that i can access and afford the specialist euipment my daughter needs urgently, rather than having to wait untill it is too late. A national disability insurance scheme, i would hope, also means that many of the unanswerd calls for help i have made in the last few months would be answered, because we would be able to help ourselves.

Bob Whittaker

Biggest Issues:

I work with children with disabilities and their families in South-West Queensland. Many of these people have to move to the coast, as the support they need to ensure a reasonable quality of life is not available.

How my life could be changed by an NDIS:

A National Disability Insurance Scheme would allow them to make choices about where they live, and the future lives of their children when they can no longer care for them through age and infirmity.

ToyNera Macgregor

Biggest Issues:

I have a son with autism, global developmental delay, cerebral palsy, epilepsy, is tube fed, ataxia, dyspraxia, severe expressive and receptive language delay, cerebral atrophy, incontinence.. the list goes on. I had to move here from Armidale to be close to a major hospital as he has also had 2 bleeds into his brain. I am a single mother. His father abandoned us when he was 5 weeks old. I cannot work (ironically I used to work in community welfare, with people with disabilities). I am a full time carer of my son until my or his death. We wait for almost 2 years at a time to get 8 sessions of speech therapy, then go back on the waiting list. Time periods are about the same for physiotherapy or occupational therapy. He can hardly use his hands, and has lots of mobility problems. I have no family support. The only respite I get is 3 hours a week. I don't have enough money to pay for equipment, therapies etc that he desperately needs, the earlier the better, as the older he gets, the less early intervention will be able to help. I can't pay for dentistry for myself, and the public system is so slow that they are only able to help when I've been in severe pain and the teeth are so damaged that it needs extraction. My knees dislocate and I have constant back pain that is getting worse, but I can't afford a chiropractor. I can't afford to maintain my own health, but I need to care for him properly and for as long as possible, and get him the help he so desperately needs.

How my life could be changed by an NDIS:

There is only one thing worse than watching your child go through this... Knowing that with sufficient help he could be so much better, and not being able to give him that help!!!!

Meredith Abbott

Biggest Issues:

Powerlessness is the biggest issue facing people living with a disability. The lack of funding and services is appalling and I believe a NDIS is vital for the future for this Country. I was left with a disability after being injured by a drink driver and after compensation was finally paid to me and my legal expenses paid I will not have enough money to support just my medical expenses for the rest of my life, let alone any support expenses. Remember nearly 20% of Australians are living with a direct disablity and a further 40% care for someone with a disability. There are quite a few votes there! Every Australian is just a minute away from a life changing disability, I learned that the hard way.

How my life could be changed by an NDIS:

A NDIS could change the way services are provided and dignity could finally be inserted to the lives of people with a disability by giving choice of provider.

Gina & Derek Boothroyd

Biggest Issues:

it will provide certainty for our daughter's future and peace of mind for our lives together as a family.

How my life could be changed by an NDIS:

Last week we purchased a home in Eltham North, more than doubling our current mortgage. Our home choice had to reflect our possible needs into the future, living with our daughter for the rest of our lives. Holly has an Autism Spectrum Disorder and may never be able to live independently. For her sake and ours, we are striving to achieve independent living for her in all we do. Our other consideration in providing for her future needs was to make a wise investment, (our home is on a half-acre block), that would adequately provide for her by way of inheritance, shared with her brother, (also with a moderate ASD). We have really put our necks on the line financially, but have realised the longer we wait to take this step to provide for our children, the harder it will become. A NDIS offering our child/ren a safety net would allow us to direct our finances into support they need now, instead of anticipating and prioritising their adult needs when we are gone. My heart aches for the retired parents who lament about their adult children with disabilities, as they know the cavalry may not arrive in time. My request is for you to lead the charge, please...

doug

Biggest Issues:

inclusion

How my life could be changed by an NDIS:

greater equity

Fay Stalley-Serov

Biggest Issues:

I have a 19 year old daughter with cerebral palsy (due to the cord wrapped around her neck at birth). This could have happened to anyone! She is very bright but wheelchair bound, unable to feed herself or talk without a spelling board or augamentive devise. She is currently finishing her HSC and will soon be out in the community full time, hopefully at Uni. We have spent the past 19 years struggling to make ends meet while also catering for our other two children. We have both had to work full time which has been exhausting and taken away from time we could have spent catering for her therapy needs. And I work as a special education teacher where I constantly see the struggles and family break-ups of othrs all around me. The waiting list for equipment and the constant begging and feelings of guilt associated with having to ask charities for funds to help pay for equipment has been heart breaking and embarrassing. For years we had to keep our daughter's electric wheelchair at school because we couldn't afford a van to transport it to and from home. For a long time I have advocated that disability is a COMMUNITY issue, as it can happen to anyone at anytime. Therefore I strongly believe that a National Disability Insurance Scheme to deliver fair and equitable funds to allow people self determine their needs is essential and way over due. I look forward to hearing from you Yours Sincerely Fay Stalley-Serov

How my life could be changed by an NDIS:

as above

Jean Cotchin

Biggest Issues:

it is embarrassing that Australia doesn't already have a decent support network such as this already. Too many people are suffering, and need support desperately. When I was in High School I saw the desperate struggles my best friend and her family had. She had Cystic Fybrosis. She was working from home while hooked up to an Oxygen tank, to pay for her drugs. Her mum was her full time carer. Her father worked crazy hours to support his family. Her 21 years here should have been better. My Dad committed suicide when I was 18. He couldn't work - he had a disability - a slipped lumber disc. He got depression. No-one gave him the support he needed.

How my life could be changed by an NDIS:

Now I work at a disability organisation. I see firsthand how valuable services and support are; and how difficult it is to give that support. This scheme will be revolutionary. I don't know anyone who hasn't been touched by disability, and the desperate struggles for the time and freedoms many of us take for granted. I really hope you will support this proposal. I've never written to an MP before, but this is worth sharing. Please consider your role as a powerful voice for change, and help make this happen. Thank you.

Susan Abele

Biggest Issues:

My son has paranoid schnizophrenia. He has been on medication since onset 9 years ago. He has not been through the hospital system which means I do not have access to any mental health services. We need access to services and support.

How my life could be changed by an NDIS:

Rhys has no social life at all. Bedroom to outside to smoke back to bedroom with visits to the refrigerator. Support services from someone other than family to take him \somewhere\ to meet with others. Access to psychiatric services - change mendication. Very difficult to get a 120kg man to a doctor that he feels he has absolutely no need to see.