National Disability Insurance Scheme

Janene Sweetnam

Biggest Issues:

I am a mother to a 22 mth old with severe disabilities. I am at this stage ill prepared for the journey ahead and as I read other peoples stories that have been fighting the system for all their life, I am scared for what is ahead for my family. I am scared that I will not be strong enough to cope. There is little respite offered, my husband and I both work to give our family the life that we wanted but now it feels as though the only option without respite is to give up a job to stay at home and look after my son. I love my son,I want to work, and want to be here for him but I do not want to be forced down the welfare line. I feel this is the way I am being forced. DSQ- have no answers, they say they have no funds to offer?If I stay in work,we support ourselves, others get employment.I want to keep paying our home off, how do I do this without a job. I do not want to be one of the families at breaking point, leaving my child on DSQ\'s doorstep because I have nothing left. Please Help us NOW. We live in a country area, no respite houses, hardly any therepies offered. We are fundraising ourselves to buy new equipment. Equipment that has huge costs- a child car seat $7000, a standing frame $4000, a bed $7000. We have to stand in front of people and ask for help, our lives are no longer private. To get funding you tell your story 100 times and I am only 22mths into this journey of having a child with a disability. God help me if this is the life my government intended to give my as a penalty for having a child with a disability. I feel sad I never knew this before and people have been fighting the good fight for 20,30,40 and more years. I am ashamed I never knew the problem was so big and that families had this huge burden with them for life.

How my life could be changed by an NDIS:

It can change it. Offer us the hope to plan for our future,offer our son the care he needs. Offers our family a chance at a everyday life, keep our home, keep our family together. We are his primary carers but we need some help to do this, let us work, have time with our other son.

Anne Ruthenberg

Biggest Issues:

I use a wheelchair and I struggle with;- * coping at home on a day to day basis as my husband works as this house isn't wheelchair friendly and we aren't in a position to do modifications * getting to a doctor when I'm sick as there is only 1 wheelchair taxi and the driver also does the school bus run {cost of taxi as they also charge for coming from another town] * Alara can't come when I'm sick as they have to protect their workers yet this is when I need help the most! * access to shops eg most thrift shops aren't accessable * access in ESk to bank; postoffice;vet; nursery and most shops.. * no access to training and development to access work to build self-esteem and reduce long term costs.

How my life could be changed by an NDIS:

I would be treated like a human being like when I was on two legs. People assume if you are in a wheelchair you are a dumbo. Imagine going to a counter to be served and be ignored - not just once but by almost everyone!

Barbara Tudic

Biggest Issues:

My son, Lachlan, aged 8 was born with Duchenne Muscular Dystrophy. This is a progressive disease which will see him lose use of every muscle in his body, with a life expectancy of 21 years of age. He will require around the clock care. I am a single mother and shortly need to start undertaking modifications to our house to make it wheelchair appropriate. A number of ramps will need to be installed, the bathroom totally renovated, door handles changed, hoists installed, etc. etc. As well, I will need to purchase a car which can accommodate the electric wheelchair he will require so the short terms costs are enormous, let alone the costs we will have to absorb in the coming years. To have a son with such a condition is absolutely heartbreaking but I want to be able to give him the best quality of life possible. He has a right to this, as does every other person, so please help me and every other carer to help the people we love. They have enough battles to live with every day and this scheme would go a huge way to giving them access to the equipment and opportunities they otherwise will not have.

How my life could be changed by an NDIS:

This scheme could change the lives of carers by providing them with help in every day care of their loved ones with disabilities. Equipment and aids which can make the lives of the disabled so much easier are very difficult and slow to access so the benefits of such a scheme are obvious. As well, to encourage people with disabilities to take part in the workforce increases their self-esteem and gives them the chance to meet and work with new people. For my son, who is physically disabled, but intellectually normal, this is essential for his wellbeing and enjoyment of life.

Nick Burke

Biggest Issues:

I have a daughter with a permanent disability, Prader Willi Syndrome, one she was born with and for which there are no cures. In all likelihood she will require care for the rest of her life and will need special help at school to manage issues with food. She also requires physiotherapy and speech therapy sessions due to her severely low muscle tone. As with many parents living with disabled children the biggest issues for my family are issues of financial means and access to support, particularly assisted living support into the future. As the system for support of people with disabilities is set up now, should anything happen to my wife or me - our daughter's primary carers we would be dependent on family and friends to support our daughter for decades to come.

How my life could be changed by an NDIS:

As with any insurance scheme, the NDIS would afford us some security for future planning and planning in the event of dramatic changes of circumstance such as loss of work or death of one or both of the primary carers. It would also afford Amelia, our daughter the best chance of a normal life. I believe that everyone is entitled to have the best chance at a normal life and the quality of a society can be measured by the way it cares and caters for those who are disadvantaged or disabled.

Catherine Thoms

Biggest Issues:

A dear friend, a sole parent of a disabled young adult struggles daily with inadequate respite care. Her son requires turning several times a night so that she never gets a night's sleep except for the infrequent occasions when she can have respite care for one night. She is highly intelligent and educated and was a highly paid professional - until her prematurely born bably contracted an infection in the hospital neonatal ward and developed cerebral palsy. Imagine being instantly reduced to poverty because who else will care for your disabled child 24 hours a day? Imagine the despair as sleep deprived year after year you see your child's disablities increase because waiting lists for publicly provided therapies can be many years long, by which time muscles have stiffened and atrophied beyong help. Imagine being severely sleep deprived for 20, 30, forty years. Imagine being a frail and elderly carer terrified of what will happen to your son or daughter when you can no longer carry on.

How my life could be changed by an NDIS:

A national disability scheme would bring respite, relief from poverty and hope for a better future to the most vulnerable Australians. It is disgraceful that it hasn't been done before this, a disgrace that carers are reduced begging bureaucrats and charitable organizations for the support that is theirs by right. It is a disgrace that politicians, who should provide leadership, have failed to champion their cause in meaningful way - not with words, words are cheap, but with action that leads to living with dignity and therapeutically, the best outcomes possible.

Chris Monteagle

Biggest Issues:

Besides the psychological burden and constant fear and pressure that you cope with on a daily basis. The financial costs of supporting a child with a disability are enormous and almost always underestimated. These include: - The absence of a second income as one partner must ALWAYS take care of the child from now on. - Therapy costs. If you rely solely on publicly funded therapy in Victoria then you are neglecting your child. Existing therapy and respite services in Victoria are critically underserviced - particularly in the western suburbs of Melbourne. Having experienced the superior services offered by the Cerebral Palsy League in Brisbane I cannot believe the gulf in service levels from Qld to Victoria. If you rely solely on publicly funded therapy then you are neglecting your child - thats the reality. You MUST seek out private therapy in order to receive adequate care in terms of both availability and quality. Equipment costs. We are on a waiting list for a walking frame that will be funded by community fundraising. We are also letter writing companies to ask for donations. Why are disabled children reliant on the kindness of the community in order to access the most basic of rehabilitation equipment? 1.2 Billion dollars of federal funding goes to purchase state of the art training equipment for privileged elite Olympic athletes while a child in Keilor goes without a walking frame. Can you explain that to me?

How my life could be changed by an NDIS:

Consistent access to therapy on a weekly basis is a mandatory level of care - not an aspirational target. Respite for the parents that deal with enormous mental pressure 7 days a week is a mandatory level of care - not an occasional luxury. Access to critical rehabilitation equipment for kids in need is a basic human right - anything less is shameful for a developed nation.

Janaki Ranmuthugala

Biggest Issues:

My daughter's family of 4 has been traumatised with the husband having Motor Neurone Disease(MND). The 2 boys are now 7 and 11 years. The father was forced to give up his job in the Dept of Defence. He gets a small pension of $500 per fortnight. My daughter has very good earning potential, but bringing up the boys and looking after a disabled husband, has had its toll on her career development. Currently they own 2 houses, one a family home and an investment property. They are now heavily mortgaged. With one income, (often part-time), additional care (all paide for), increases their debt. Unfortunately our daughter is part owner of our home as well, because in 1993 when she was working as a doctor in Meecy hospital, Devonport Tasmania, she helped us pay the mortgage on our house, since we too had just migrated to Aust. Much against her wishes we added her name too as part owner, but she does not get any income from our house, since we are retires living in that house.

How my life could be changed by an NDIS:

Now my daughter's husband needs to be in permanent nursing home care. Some nursing homes are well below hygiene standards. In order to get a decent one, she is required to pay a depost of $475,000 as well as a daily fee of $100 per day. This is unbelievable. I wish we had NDIS. But that will be too late for us. Can you help us in any way? We can sell one house, but since that is under mortgage, she will not be able to get $475,000. In addition $100 per day is about $3000 per month. My daughter is earning, but not that much and she has 2 boys of 7 and 11 to bring up. Under the circumstances what help can we get? Any help will be greatly appreciated.

Lindsey Duffield

Biggest Issues:

I am an occupational therapist with over 30 years experience in the disabilty sector. I am constantly saddened by the ineqity of service that i am able to provide based on the huge differences in funding sources available (or not available) to my clients.

How my life could be changed by an NDIS:

A National Disability Insurance Scheme will assist in providing greater equity and allow decisions to be based on need and not what funding scheme is applicable to them.

Terry N. Tebbs

Biggest Issues:

My adult Son Gary a truama inflicted partially neuro impared epileptic whom is able to live alone is disadvantaged by mainstream insurance having to pay standard premiums to insure him from accidents and income protection whilst on a basic wage primarily determined by his health condition.

How my life could be changed by an NDIS:

Gary under a NDIS would presumably qualify for partial cover thereby reducing his premiums. Currently his premiums are a disproportionately 13% of his day to day living expenses. He would also avoid having to continually explain and justify his medical history to the insurers.

Leanne Hewes

Biggest Issues:

My sister has a unique disability and my mother has been her carer for most of her life.. until breaking point about 5 years ago. My Mum could not cope anymore and I stepped in to say that DSQ must take my sister into care. My mother has nothing left to fight this anymore and has gone little nuts in the meantime. It’s the nicest way I can say it. I have only just started to fight on my sister's behalf and am completely shocked at the lack of funding available. My sister has been disabled her whole life! To think that the government never had any intention of finding her suitable housing or giving her an opportunity to live independently makes me feel sick. To think that the government can ignore their needs leaves me feeling disgusted. It is much easier to sweep the issues under the rug when most of the people concerned do not have the capacity to fight for themselves. To say that there are simply no help/funds available is not good enough! It is neglect! The government only had the last 20 years of her life to get organised yet now I find out had no intension! As far as I am concerned my sister has just been chucked anywhere. I use the term chucked because there has been no care or consideration as to her needs. No assessments completed to ensure that her needs are addressed therefore care is inappropriate. Her health has deteriorated as a result of the neglect, her social skills have gone backwards, she has no friends, less mobile and independent than she was prior to living at home and this has now created more stress on the health system. There is a lot more to life than being fed and cleaned! I am now also receiving coinselling. Not to cope with Emma’s Disability but to deal with the system. No response, no help and no no no all the time!

How my life could be changed by an NDIS:

Help will be available for those who truly need it! People with disabilities and their families will have the right to independent living or lifestyle choices as does anyone else within the community. Those with a disability can focus on Independence and personal development instead of trying to find care, accommodation, funding or someone who cares or will listen. People with disabilities will finally be considered members of the community and acknowledged as individuals with needs. Persons with disabilities needs will be assessed and met accordingly!