Meet Sophie. She is happy, engaging, energetic nine year old. She loves fairies, dancing, gymnastics and anything that is pink and sparkly. She also has Down syndrome.
Because she was born with this genetic condition, she is not eligible for compensation or support from any of the insurance schemes available in her state. She and her family are reliant on the under-funded and chronically stretched disability service system.
Her multiple hospital stays and specialist visits have been covered by private health insurance. Her parents, however, have paid the considerable gap. Despite the fact that she has a significant hearing impairment which has compromised her speech development, she is only able to have less than 10 sessions of speech therapy per year. Her parents pay for her weekly sessions.
Her parents rely on their extended family--primarily Sophie's two grandmothers--for all of their support. They access no respite services, and pay for any extra childcare their family cannot provide privately.
But they consider themselves very, very fortunate--because they have the capacity to cover these costs themselves. They know many others who do not.
All this I know because Sophie is my daughter.
We know we are the lucky ones. We know that Sophie's needs while significant, are not complex. We are lucky because we can find ways to bridge the considerable gap between what Sophie needs and what is available. But we know many, many others who cannot.
We also know that while we are managing now, the future is very different story. We spend our days and nights worrying what will happen to Sophie when she becomes an adult.
No matter which state you live in, the story is the same. The disability service system is both broken and broke, chronically under-funded and under-resourced, struggling against a vast tide of unmet need.
Last year the National Disability and Carer Council released Shut Out: The Experience of People with Disabilities and their families in Australia. The Federal Government also released Who Cares? the result of an inquiry into better support for carers by the Parliament's Family, Community, Housing and Youth Committee.
Both reports were remarkable in their similarity detailing the discrimination and exclusion experienced daily by people with a disability and their families. Both reports demonstrated that people with a disability, their families and carers are among the most disadvantaged groups in the nation. People with a disability are less likely to complete their education, less likely to be employed and more likely to be poor and dependent on income support. Families with a member with a disability struggle with high rates of physical, emotional and financial stress.
The reports also detailed, sometimes in heartbreaking detail, the way the service system was failing people with a disability and the profound consequences for their families and carers.
There is plenty of agreement about what the problems are. The pressing question is--what is the answer?
For many advocates in the disability sector the answer is increasingly obvious--a National Disability Insurance Scheme. An d now it seems the Federal government is beginning to agree.
Late last year the Prime Minister Kevin Rudd announced the Productivity Commission would conduct an inquiry into a National Long Term Care and Support Scheme. The inquiry will examine the feasibility, costs an d benefits of replacing the current system of services with a new national no fault approach providing long term essential care and support for people with a disability and their families.
The Commission will be assisted by a commissioner with expertise in disability as well as an independent panel of experts. Public consultations will also be held. The Commission will report back to the government by July 2011. …