National Disability Insurance Scheme

joumana hammoud

Biggest Issues:

i am caring for a child who has an intellectual disability. as a carer for such a case, i am, often, get to suffer depression. help from respite carers is vital in order to give me a break and help me to recharge my lost energy. searching for funds and waiting ages in order to get the aproval on the aplication would exert more presure on my feeling and increase my frustration which in turn would be reflected on my family including the child with disability. the answer i REALLY hate to hear every time i contact services for help, is: we don't have enough fund we will put you on the waiting list.OR, we have other people who need more help than you............THER IS NO WORSE AND BETTER CASE IN TERM OF CARING FOR DISABILITY

How my life could be changed by an NDIS:

having things done(funds, process of the aplication form and aproval) in an easy way would bring some releif to my frustation. finding carers and respite homes that cater for my child with disability, also in an easy way (no waiting list, no suffer of the same 100s of questions that need to be answered every time). in the conclusion, more fund allocated to the disables and their carers more are services available to care for us(carers) and our person we care for. also, less hassal to go through and cosequently frustations. thus, less likely to suffer DEPRESSION which is an AWFUL FEELING someone would get.

Jane Russ

Biggest Issues:

I am the parent of young woman with cerebral palsy. The difference a scheme such as this would make to a family dealing with huge issues cannot be measured. It a human right for people to be treated equally. Genetic disorder or acquired brain injury. The workload and anxiety are the same, but the financial support extremely different and add enormously to already fractured and fragile people. Please, please hear the need for this to be implemented. Jane Russ

How my life could be changed by an NDIS:

The support from a scheme such as this would have lessened the pressure of waiting on all 'the lists' for equipment or carers hours while watching others with acquired brain injuies receive enormous support- sometimes more than necessary or needed. We are all Australian citizens and it seems shameful that in a country like this we are so lacking in fairness and equality. This must be implemented as a matter of urgency.

Suzanne Sutton

Biggest Issues:

My story has already been told thousands of times in the hope of change and here I am again hoping that someone somewhere will listen. What is not often understood is that this story is also told over and over as you beg and plead for services. Desperation, abandonment, mental and physical breakdown are the only types of words that capture the attention of a system that has no long term plan. We are lucky that we live in this great country, but we can only be truly great if we look after those that can’t look after themselves. My daughter Sinead has an unknown neurological disorder which has resulted in a physical, intellectual and visual disability. This affects the whole family, my other daughter also spent most of her life either in hospital or not being able to do what the other kids do as we simply did not have the funds (I had to go on the Carers pension)besides the fact that her father left as unable to cope. Personally I have had to accept a life of being alone; caring for my child/adult, not enough support given that allows a carer to have a life outside of the carer role. My daughter is just as valuable a human being as anyone else and deserves to be valued; she certainly has lessons that she could teach others. I am truly afraid of what will become of the two of us, I will hold on as long as I possibly can but I have seen others that also love and care for their children physically disintegrate and become disabled themselves. They should not have to wait, beg and plead to be helped. Sinead is 14 and already I am trying even to get some direction as to what to plan for the future. To quote what I have been told by other families “if you think it is bad now, as soon as they turn 18, they are completely forgotten about”. This is not socially right and must be rectified.

How my life could be changed by an NDIS:

The proposed plan for a National Disability Insurance Scheme (NDIS) eradicates all fears of care. It is a full time job for most of those caring for the disabled, so the carers pension does not provide an opportunity to put away for the future that includes being able to afford a descent standard of care. The thought that when I die (which will be probably a lot sooner due to the physical and emotional demands) that my girl will end up wherever, being cared by whoever is really distressing. My only concern for this life changing scheme is that once again administration costs overwhelm the system. Currently my daughter receives a minimal support package (that I received after several submissions and interviews, to determine that I was about to fall over before it was granted). The service provider who manages this package receives almost half (44%) of the package in administration costs, if costs were broken down as far as the time spent managing my case, I know this administration cost could not be justified. The amount of band-aids put on the disability system has not stopped the bleeding and is now suffocating the patient. I did not want this to be a sob story, rather an insight into the struggles that families and people with disabilities endure on a daily basis. This plan certainly provides hope that the years of desperation can be changed into years of joy where the quality of life for all those involved especially the disabled person can be lived.

Clare

Biggest Issues:

heavily reliant on assistance for daily living tasks. Requires extensive medical intervention.requires full time carer. Appropriate accomodation and recreational activities.

How my life could be changed by an NDIS:

If this system is to go a head there would still be a huge reliance upon the family for provision of care accomodation and finacial contribution. However any assistance would be applied it would reduce some of the stress, strain and distress placed upon families. Moreover the improvement of opportunities for the disabled individual would be the most outstanding contribution our government should endevour to provide as a matter of human rights and common decency. Its a positive change and one that has been CONVIENTLY OVER LOOKED FOR TOO LONG! provide the funds and assistance or loose votes - make it happen because we are aware of all the faulse promises.

David Carter

Biggest Issues:

My brother Nicholas has Angelman's Syndrome, a rare intellectual disability, which means he will never speak, and will retain a mental age of around 3 years for his whole life. Now that Nicholas is finished school (and his special school, Kingsdene, is now closed down for good), my family is faced with caring for him seven days a week, with only minimal respite from activity programs. Living at home isolates Nicholas from his friends and peer group, and isolates our family.

How my life could be changed by an NDIS:

With a NDIS, there would be adequate individual funding for Nicholas and our family to exercise choice in our living arrangements. Waiting lists for group homes are very long, and these may not be the most appropriate care environments for all in any case. Adequate funding with individual choice, allowing each member of our family and every Australian to participate in life to their full potential - that is the power and simplicity of the NDIS. As simple and as radical as Medicare, requiring the same political courage.

Pamela Robinson

Biggest Issues:

I have a grandson with cerebral palsy, & I know how difficult life is for his family on day-to-day basis, as he is nearly 12 years old & needing 2 people at any time to lift & move him. Fortunately he has a happy nature & wonderful parents & twin brother.

How my life could be changed by an NDIS:

A National disability scheme should be imperative on the political agenda.

Pauline Van Der Woude

Biggest Issues:

The biggest issues are that I face is every day living, such as showering, eating, getting in and out of bed, mobility, cooking, every thing that others may take for granted.

How my life could be changed by an NDIS:

The National Disability Insurance Scheme would help people like my self get more hours for support, more needed equipment and quicker. I have a friend that was in desperate need for a new wheel chair due to physical problems and had to wait over two years before they were even granted a new chair, in that waiting time her health deteriated and had to under go a few operations, this could of been provented if they did not have to wait so long for the wheelchair.

Joanna Goumas

Biggest Issues:

I am strongly in favour of the proposed scheme because I would like the freedom to do the things that I would like to do. I would like to live independantly, also to be able to save for special occasions. I would like to be able to have help with getting a new job or job skills for the future. I struggle to get more hours for carers to support me.

How my life could be changed by an NDIS:

Freedom to do my own thing when i want to. To have options with getting a new job if i choose to. less stressful life. to be able to plan for the future.

Andrew Sloan

Biggest Issues:

I have been working in disability service for 2 and a half years. I have seen countless cases of families in crisis due to the impact of caring for a personal with a moderate or severe disability. I have seen the heartache and tears and tried to restore some normality for these people in my work. At the end of the day this support is limited because the system is broken. The way it is set up at the moment means families who are in crisis need to jump though major hurdles with ADHC NSW to get any support. These families are at breaking point and the lack of support is destroying lives that deserve better. I would be more than happy to meet you in person to talk over this issue.

How my life could be changed by an NDIS:

A National Disability Insurance Scheme would engage our wider community in the awareness and support required by our people who have a disability and those who care for them. The NDIS scheme will provide proactive support to these vulnerable people and move away from the reactive crisis management model currently being operated. This model is broken and it must be fixed.

Michael Davis

Biggest Issues:

Support in the home, as I live alone; No Security, not enough Homecare support! Not knowing what the future holds for my wellbeing,in home support etc...

How my life could be changed by an NDIS:

Appropriate funding to take more care of my and other persons with Physical disabilities, future needs. SIMILAR TO NEW ZEALAND, where all disabled are cared for under a National Plan. Where all people have some type of insurance.