National Disability Insurance Scheme

Melissa

Biggest Issues:

1. Lack of intervention therapy services (public or private) to assist my child with reaching their full potential. 2. Long waiting lists meant that after 8 years of waiting, he was finally diagnosed with an issue that should have been caught, assessed and treated 8 years ago when is outcome would have been exponentially greater. At 10 years of age he physically can't do some basic life tasks of a 5 year old. 3. In classroom support is non-existent. My local MP wrote to me and told me to go private or go to a charity. The charity was unable to help. One other parent was required to pay for the child support person in the school system. She works two jobs to pay that helper's salary. A shining example of a caring society and a government with a heart. 4. His level of function as an adult is not yet known but is looking better now that intervention therapy has started. However, who will look after him when I am gone? 6. I give him over 2 hours of therapy a day to assist in keeping him out of a wheelchair in the next ten years. This means I can't hold down a decent paying job, and under new legislation, I can't come to a flexible arrangement with an employer to work around my child's needs. I would like assistance with the therapy 2 days a week. Is this too much to ask? 7. Cost of travelling 600km to medical appointments is very, very expensive. 8.Cost of equipment is NOT cheap. And NOT tax deductible. 9. Guaranteed amount of respite care. For the last two years we have it twice a year for about 4 hours. Prior to that it was 5 years since we last went out together, just the two of us. We don't want to go to the well too often, and an agency is too expensive.

How my life could be changed by an NDIS:

If it does all it claims it will, it would bring peace of mind for my child's future. It would lift the tremendous burden of caring for my child, and also allow them to grow outside of my sphere of influence and become a fuller member of society. It would make me happy as an Australian to know that we are no longer treating our disabled in the shameful way we currently do. Especially where if intervention therapy is swiftly and properly administered, then a child can have a much greater range of function than where no/little therapy is given

Jody Hartfield

Biggest Issues:

Our child has cerebral palsy and as such needs constant care and supervision. This means as a mother child care is not a desirable option and as such I am unable to work. Respite is therefore an important concept to us as a family however we have not found it easy to obtain. The stress this causes on the family is profound. The loss in financial earning ability is also an issue, added to the extra costs involved in raising a disabled child.

How my life could be changed by an NDIS:

To be able to provide the treatment, therapy, equipment, respite etc needed for a disabled family member would go a great way towards reducing stress on the family as a whole.

David Carter

Biggest Issues:

Lack of supported accommodation for my disabled brother when he finishes school.

How my life could be changed by an NDIS:

Adequate supports and services for my brother, allowing him to fully participate in life socially, not permanently confined to the family home.

Simone Ward

Biggest Issues:

Everything! Emotional and physical worries - both from a day to day perspective and a long term perspective. Massive financial concerns (as it is a severe physical disability)... We need support for every single aspect of the person's life...

How my life could be changed by an NDIS:

Stop wasting our precious time spending our lives trying to access support (physical, emotional and therapeutical) and actually spend it helping the person with the disability.

Natalie Hood

Biggest Issues:

accessing resources and information due to limited resources and financial cost.

How my life could be changed by an NDIS:

It would alleviate the extra stress involved in trying to find financial cost for everything that is needed, and give our daughter more opportunities to access services and resources which will be beneficial to her. We would also be able access more information services, such as seminars and conferences which would enable us to further assist our daughter.

Caroline, Edwin Franks and three future voters

Biggest Issues:

A National Disability Insurance Scheme, such as that suggested by Mr Bruce Bonyhady, would enable us to secure equipment, aids, early intervention, home and car modifications, specialist services etc. based on our son's individual needs. In particular , we would be able to afford a safe school, timely and good quality behaviour intervention, community participation and a means for me to return to work and for my children to enter the workforce full-time rather than have to commit so much time to the care of their sibling. Another major concern is the lack of safety via the public scrutiny provided by volunteers in autism support units in some mainstream schools. (eg Sherwood Ridge PS, Kellyville) compared to other schools that allow community participation and social inclusion of children with autism in support units.

How my life could be changed by an NDIS:

We could provide our son with the aids, services and choices he deserves and enable our family to live a more normal life. For example, I would be able to return to work rather than being a full-time carer because I know we would be able to afford good quality care and monitoring or carers from remote locations. This peace of mind of knowing our son and our other children's sibling safe and happy is priceless. In addition, our health would improve, our finances would improve and our family would be stronger and the Australian tax payer would also benefit.

Dianne Evans

Biggest Issues:

There are so many! Physically, emotionally and financially we are being exhausted. We are more than willing to care for our daughter but we need help from the Government for our needs in the future. I am fearful that at some stage we will not be able to provide for her.

How my life could be changed by an NDIS:

Give us peace of mind and provide for our future needs.

Megan

Biggest Issues:

My son is 23 years old and has an intellectual disability the main problem we have now is, what will happen to him when we can no longer look after him. What people don't understand is that looking after people with a disability isn't going away we are an ageing population and there are more disabled people coming, they may be children now but they will also be adults. At the moment there is no hope of accommodation for our son.

How my life could be changed by an NDIS:

The disability insurance scheme would hopefully give us and other parents like us hope of eventually having care for our children when we die. Other families won't have to live with the heartache and stress that we have been put through by governments who bury their head in the sand, hoping it will all go away.

Jackie Williams

Biggest Issues:

Trying to balance working many hours to pay for the therapy my daughter needs and having time free to actually give the therapy to her.

How my life could be changed by an NDIS:

Having financial support on an ongoing basis would mean n increased quality of life for us all

Pamela Harper

Biggest Issues:

While we have no difficulty to cope with, we see the problems some friends and neighbours have and we understand the stress of having to care for family members with a disability. A National Disability Insurance Scheme would appear to be a very good idea.