National Disability Insurance Scheme

Lesley

Biggest Issues:

The issues that we face are poverty, lack of suitable housing, lack of decent ability related child care, lack of respite........just plain lack I am a single mother with a 14 year old boy with Autism an Intellectual Disability and general failure to thrive. I also have a 16 year old daughter and my mother living with me in our very small 3 bedroom government house. Our carpet is wearing out filling the house with dust particles that aggravates both my mother and my son's health, we have a roof leak that no one will fix, ect ect. To add insult to injury I work part time, and spend each term begging for proper ability related child care so I can continue to work. I would love to see the social Workers who hand out what little resources there are to stop seeing those of us who care for the disabled or have a disability as welfare recipients and start to really value the contribution that we make to reduce the burden of care to the government

How my life could be changed by an NDIS:

An Insurance Scheme, would allow us access to proper care for my son during school holiday and before and after school care. Maybe then I could work full time and improve my financial situation. (I might even have some sort of retirement. I would like to see this type of care seen as separate to Respite Care. We often go without respite just to cover school holidays We could have proper housing that was properly maintained and a bedroom for everyone. We could have respite so my daughter and I can do some things together, going to the movies with my son is not fun! When my son grows out of his Convaid Cruiser we could have a replacement straight away rather than waiting for years, when he needs new orthotics we could have them straight away. His continence product could be purchased reducing the burden on the family. Maybe just maybe we could all have access to decent dental care and health care as being a carer wears down our own health and well being to the point that many cares end being care for.

Megan Shepherd

Biggest Issues:

Access to regular paediatric physiotherapy services through our local hospital. The denial of GWAHS to grant approval for BHBH to advertise 4 vacant physiotherapy positions over the last 2 years has left a massive staff shortage in the phyiotherapy department of the BHBH with NO paediatric physiotherapist. My son is 19 months old and has cerebral palsy and requires weekly physiotherapy and hydrotherapy to give him the best chance to reach milestones at this early age. Such access to services are hindered by the extreme staff shortage in physio at the hospital.

How my life could be changed by an NDIS:

By having a NDIS I believe their would be above all a huge increase in awareness of the day to day trials that people with disabilities and their families face. I, like all families of children with a disability did not plan for this situation but I have accepted that it can not change - my son has cerebral palsy. Since this is the case, I want to be able to be positive and face what is ahead of us by giving my son the best possible chance for growth and change and by giving him my time. I am so very frustrated by having to fight for things that I consider to be basic rights - access to therapy services. An NDIS would ensure equal access to services.

Kim Fairbairn-Baker

Biggest Issues:

I have a daughter Jayde with autism. My husband and I have pursued the very best for her in all things. We have spent many 100's of thousands of dollars pursuing ABA techniques, providing specialists services in speech and occupational therapy. I willingly gave up my career to give Jayde the best which meant home schooling and additional planning support for Jayde to access mainstream school. The public health care could not provide us the support that we needed or we continue to need. The quality of life Jayde lives is a result of resources and finances available to us - however they have dwindled. Let me state clearly - these circumstances were extremely unfair. A kid's potential to receive essential supports should not be dependent on their families socio-economic status or funding around a particular disability type. We don't want to be continually providing the level of care we have had in the past, we cant! We want our lives and we want a government that is fair.

How my life could be changed by an NDIS:

Jayde as others kids has a right to a future, to work, to dream and to have the resources from a government and community to assure this. We are mad as hell, we want change and we will yell! We ask for your support with this. It not only makes sense, morally, ethically and financially, it's the right thing to do. Support it night knowing WHEN disability effects you, you made the decision to make a good choice in supporting this scheme!

julie couzens

Biggest Issues:

As you both well know I am a carer in crisis of now 3 family members 24/7. I receive no services or support, I am expected to do it all myself doing this has destroyed my health. Our housing is not suitable the facilities, mum n brother share the same room. Bathroom is far to small for disabled etc. Just find a place and move I am told, my job related depression is such I cannot make simple phone calls etc.. Having worked for so many years and I continue to do so I have no retirement to look forward to, my daughter can't get a job because she has the wrong sort of disabilities. She has deformed feet but we can't get what she needs for them, dental care we can't get health care we can't get. If someone doesn't do something to help me/mine and others something will have to give. Housing is currently the biggest issue facing me and mine, being a carer with no equality with other workers I will never have the opportunity to try to own my own home. Regardless of what people think I can't continue to do it all alone.

How my life could be changed by an NDIS:

Currently there is no support for the disabled nor their carers the NDIS isn't the whole answer but its a start.

Heather Maley

Biggest Issues:

My daughter is 7 and has CP and a complex heart condition; she is mobile via a wheelchair and has trouble speaking. She attends a public school with good support from the principal and a support teacher. I am a nurse, my husband is a plumber. We have no support from family or friends. Our ability to work is curtailed by the needs of our daughter and we have 3 other children. After 4 years in the process of applying for help to modify our home via a disability service and government agency we are now asked to supply a statuatory declaration as to why we bought our home, why did we think it suitable, did we know formally our daughter had CP - with the implication being we have done something wrong. I believe we as a family 'just' manage to keep going and we are being harrassed by the government aency ... probably to be told our application is denied (has been twice now on basis there are no funds). We lift our daughter into a bath and toilet due to inadequate set up for her care. At the time we moved here she was undergoing 3 open heart surgeries and we were unsure if she would indeed survive. We had lived in this area for many years; other children went to local school. The school cost over 1/2 million to modify ...am i to believe the onus is on us to move out of this area or borrow a large sum to do the work ourselves ...even though we are at the limit of our borrowing capacity as we had to get a wheelchair access vehicle (at great expense. I work periodically in community health seeing aged persons being looked after by the government agency in a way my own daughter is not ..... No wonder Carers are 'Mad as Hell'. It shouldnt be SO hard for us to simply care for our daughter SAFELY and with support from our Government. Please dont make OUR LIVES harder than they should be in this so called Lucky Country ......

How my life could be changed by an NDIS:

We would be able to continue caring for our daughter.

Teresa Bourke

Biggest Issues:

My 2 children both have asperger's syndrome, anxiety and depression. As a single mum on a parenting pension, I find it very difficult to provide what is needed. Issues faced are lack of suitable, affordable education, access to mental health and disability health services, presently force to pay for private services. The services that are available are impossible to access as no one is able to tell you how to link into them. My 2 require activity based treatment. They are calmed, stimulated and engaged through trampolining, pets, interactive computer games, and other sport type equipment, as recommended by their psychologist, but equipment wears out from overuse. Finding money to keep replacing it is hard. Medication also eats up a big chunk of my income. One of my daughter's meds is $100 every 2 months, as the one on PBS had too many side effects. My 2 are too old to be helped by the early intervention packages.

How my life could be changed by an NDIS:

I would be able to get them into groups that would help build up their skills and confidence, making them more independent. Greater access to suitable education and services. Able to replace needed equipment at home to keep the children engaged and active. Being able to purchase non PBS medication. By making it easier for me to provide these stimulating and medicating basics, the children will become more 'normalised' and able to fit in with their peers. This would allow me to finish my studies and enter the work force, giving me 'ME' time, that I don't have at present.

Trisha

Biggest Issues:

I am disabled but can't get any help. Was paid out by work cover not that much. But would like to know that it is ok for single on a pension to have over $150.000 in cash and assets but I can't even get a bloody health card & have to wait for 3 years ....where is the Justice there...we spend millions on Boat people but don't give a shyt about our own..Yes I have a beef with the government

How my life could be changed by an NDIS:

Some one help me what money I have is going fast

MARY ROFE

Biggest Issues:

coordinated services that respond to the real needs of families living with disabled members.

How my life could be changed by an NDIS:

making dedicated services available in our area

Philip M A Shaw

Biggest Issues:

My two year old grandson developed quite serious epilepsy at the age of four months. Until that time he was developing normally as a bright and cheerful infant. He is now quite badly disabled and severely delayed developmentally, i.e, cannot yet sit up or crawl. he is frequently hospitalised. His parents are not well off financially, but our daughter, the childs mother, who is an anthropologist by profession and previously worked as a policy offcer for the Victorian State Govt, now has to stay home and care for the household and the special needs of her son. This is a 24 hour a day, 7 days a week gruelling service without end. The physical, emotional and financial strain of this impacts greatly on the rest of her family, her husband and their healthy five year old daughter.

How my life could be changed by an NDIS:

IF a NDIS Scheme was in place our daughter could afford to pay for assistance both to give her and her family relief from the constant pressure, and also to allow her the equal opportunity to go out into society again, to exercise her talents, knowledge and skills by working in a worthwhile career position again.This would benefit her family financvially and emotionally and benefit the community by allowing her to make a worthwhile contribution to society again through her work.

Peta Holmes

Biggest Issues:

I am the mother of a severely autistic son. I am having great difficulty accessing services for him at the moment and there current system in regards to support for carers and respite is completely dysfunctional. I worry about what will happen to him when my husband and I are no longer here are for him. We have also had an enormous battle with the NSW Department of Education and Training in regards to his educational placement. There are simply not enough places in appropriate educational ssettings for children with special needs like my son. I would ask the state and federal governments to increase their funding for students with special needs to insure they can be placed in appropriate educational settings that can meet their needs. If Governments accessed Centrelink data on parents receiving either carers payment or careres allownace they could easily get the figures they need to appropriately plan and fund the future for our children. Governments need to be proactive in planning ahead, using this data funding amounts could calculated so that all children with special needs can be educated and cared for in the future.

How my life could be changed by an NDIS:

A national Disability Insurance Scheme would mean that wouldn't have to worry about who will care for him when we are no longer able. It will also mean that his 3 brothers will not have to bear that burden, they will have their own lives and responsibilities.