Submission to Productivity Commission On Disability Care and Support

I am the mother of a 16 year old daughter, Jenna, who has a severe intellectual disability, is profoundly deaf, has some physical disabilities and cannot walk independently.

I am in favour of a National Disability Insurance Scheme funded by a Medicare style levy on wages.  More funding and resources are certainly needed to reduce and stop the disability sector being crisis driven.  The system is not coping with the current needs and will continue to fail huge numbers of people in the future if something is not done, now. 

We have often had long waiting periods to get new wheelchairs, and other equipment we certainly cannot afford to buy.  Therapy equipment is vital to help my daughter reach her full potential.  We also have to go on waiting lists to see a Case Worker, 18 months, then once the immediate needs have been dealt with we lose the Case Worker.  

ADHC need more Physio therapists, Speech therapists and Occupational therapists.  Unless you can say your child’s need for Physiotherapy or Speech Therapy is critical you will wait up to a year for a consultation.  While my daughter is waiting for help with a particular problem, that problem is getting worse and often some new problems arise because we have not begun therapy for the first problem.  More timely Therapies are needed, which could be provided if more money was available to hire Therapists.

Having a child with disabilities has made it difficult for me to work many hours each week and I need to work if we are to support our 3 children and pay off a house and car.  I think there needs to be more financial support for Carers to recognise the huge job we do, day in day out and to compensate us for limited ability to work and earn money.  We are financially disadvantaged compared to families whose children do not have disabilities.

As my husband and I get older, we worry how we will continue to look after Jenna  with her high support needs.  One day before we are physically unable to look after Jenna, we would like to be able to settle Jenna into a Group home or better still a home of her own she could live in with several other adults with disabilities of her choice.  We would also like to choose who looks after her to be sure she is being looked after properly with care and compassion as she cannot speak up for herself and is very vulnerable.  

At present there are no where enough supported accommodation places and eligibility is again, crisis driven.  This may seem selfish, but my husband and I, would like to retire one day while we are still physically and mentally able to enjoy a reasonable retirement. 

In short, we and the thousands of other families who have a child with disabilities need more support sooner, so we don’t end up in crisis.

We are very pleased that finally the Government is looking into the needs of people with disabilities, it is a step in the right direction, and we hope it will lead to a better life for all Australians.

Regards

Linda Wetherill