FOUR months ago, cerebral palsy sufferer Tess Pearce was living with her severely arthritic mother and getting just one hour of care a day.
Today, Tess, 20, is getting six hours’ daily care and preparing to move to Melbourne after her relationship with her mother started to suffer and she was relinquished to the Department of Human Services to get both of them the support they needed.
“It was heartbreaking and one amongst thousands of reasons we need a National Disability Insurance Scheme,” Ms Pearce said yesterday.
“Currently we have a system of endless assessments with no results just to cope with the basics. We want families to stay together just as families, not carers, while giving people with disabilities the independent life they want.”
Ms Pearce was speaking at a NDIS forum at the Art Gallery of Ballarat organised by Karden Disability Support Foundation and Ballarat MP Catherine King.
It was also attended by federal disabilities and carers parliamentary secretary Senator Jan McLucas who outlined the government’s NDIS plans.
“We want it to be a scheme that really focuses on the person. We want to say ‘you are a person with a disability, what do you want to be?’,” Senator McLucas said.
“We want your goals and aspirations so we know how we can support you in achieving those aspirations.”
However, she also warned it was going to take a lot of hard work.
“It is going to take a while because we’ve got to do it right. We have to find more workers and design a system that is more responsive to your needs.”
Senator McLucas said Ms Pearce’s story had given her plenty to think about.
“Tess, you should have been getting six hours care a day when you were with your mum. We want families to stay together because it is the right thing for them and it is cheaper for us. We are a government after all.”
Ms King said it was a “damning indictment” that a mother had to relinquish her daughter to access services.
“People with disabilities shouldn’t have to go through bureaucratic hoops,” Ms King said.
“But how do you make sure you provide services to allow them to participate in life? We are very determined to do it because of stories like Tess.”
Karden Disability Support Foundation chief executive officer Karen McCraw said disability issues had struggled to gain a mainstream political and community focus.
“As we move towards a future that hopefully includes an NDIS, KDSF sees that a turning point in disability rights and power is coming to people living with a disability in Australia,” Ms McCraw said.
Under the NDIS, people with a disability will work with local providers to identify goals and future plans, be assessed for individualised care and support packages and have decision making power about their care and support.