11 September, 2012 8:19AM AWST

The Paralympics and the future of Australians with disabilities

Some are saying the Paralympics have come of age in 2012. The crowds and the sporting heroes being created are rivalling those of the Olympics. But perhaps there is an age still to come when Paralympians become Olympians.

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Every four years the same arguments emerge around whether a separate event for people with disabilities is good or bad for disability inequality. Some high profile Paralympic athletes say they don't want to risk losing the prominence the event has built up for people with disabilities.

But by both its definition and its scheduling, the Paralympics emphasises the separation of people with disabilities. The term comes from combining the Greek prefix 'Para' meaning beside, with 'Olympics'. And separation is one of the biggest challenges facing many Australians with disabilities and their families, even after the move away from institutionalisation.

This is the view of Heike Radzevicius, the daughter of German immigrants who lives in Broome in north Western Australia with her adult son Ben who has Angelman Syndrome.

Ben has just left for the day with a couple of carers who are helping him develop work, collecting mail for local businesses. Heike enthusiastically talks about her passion for gardening over a cup of tea.

"I'm just having some success with peanuts... It's interesting to have a little space; challenging but interesting." she says smiling.

It's a very happy scene. What you don't easily get a sense of upon meeting Heike, is the 30-year marathon of hardships that she has endured as the mother of someone with a severe disability.

Having a child with Angelman Syndrome, where chromosomal damage restricts the ability to learn and causes regressive physical disabilities, would be a massive challenge for any parent. But life got really difficult for Heike the year her son Ben, finished school.

"When someone with a disability hits 18, they're home, and you can't just leave them home, you need to look after them." she says.

Coupled with this was the death of Heike's partner and Ben's father.

"My life changed dramatically." Heike says matter-of-factly.

All of sudden the challenges of raising a child with a disability looked like the golden years. Heike had been working as a manager in disability services, living in a two-income household, having her son catered for at school for 30 hours a week, and sharing the challenges of life with her partner. But this stability vanished. Ahead was the never-ending battle for the basic elements of a happy life.

"You have to lobby for your survival." Heike says.

There were no surprises in the findings of the recent Disability Rights Now report that Australia is failing to meet the basic rights of people with disabilities. Specifically, the report said Australia's disability support system is "under-funded, unfair, fragmented and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports."

But Heike and her son Ben's experience of the Australian system has been anything but typical. Amongst parents, Heike is something of an elite athlete. She's professionally trained and was a manager in disability services. She knows the system, how it works and how it fails.

Faced with poverty, loneliness and the bleak quality of life for Ben in an institution, Heike went to work. She achieved the opposite outcomes that most Australians in her situation might expect. After years of lobbying, Heike succeeded in convincing the authorities to grant Ben independent supported accommodation. She bought and ran a successful small business. There was a monumental amount of hard work, but against the odds she'd managed to assemble the ingredients of social connection, economic independence, and the funding for care and accommodation her adult son needed.

Through her professional knowledge and sheer determination, Heike managed to create much of what is promised under the National Disability Insurance Scheme (NDIS) ten years before it's forecast to transform Australian disability services. But this just didn't work.

"It sounds wonderful and I had the money, but I just couldn't find the people."

Despite having the funds to provide the carers, finding the skilled workers in a regional town to fill the position long-term was impossible. Ben's support services were administered from another regional town hundreds of kilometres away. Heike tried to have her own life and keep an eye on her son's burgeoning independence. But with Ben's new life came increased isolation. Living mostly out of view of the community allowed inferior quality carers to fail in the provision of Ben's basic rights.

"I don't know how many times I picked Ben up after he'd been away for two or three days and he was peeing dark brown urine...he'd be losing weight with some people and gaining weight with other people." says Heike.

While Ben struggled with the quality of disability care available in regional Australia, the guilt this inflicted on Heike, and the pressure of trying to have her own life, was causing a big toll on her health.

"I was developing weird things like I had heart damage, I had a limp that I couldn't get rid of...and mentally I was starting to crash."

Heike pulled the pin on the lives she had worked so hard to create for herself and Ben. The business was sold and she moved back in with her son to ensure his quality of life. It was an experience that has left her cynical about the traditional model of care for people with disabilities.

"I'd lost faith in the system... Four years of total guilt about leaving [Ben] with people that didn't love him and didn't really supply the care that I wanted for him."

Reunited again, Heike cares for her son morning and night during the week. Alone together, the weekends are spent at home. The normal social networks of work, hobbies or sport are limited for those with severe mental disability. The isolation envelops Heike as well. After climbing out of a year of depression, the indefatigable mother is preparing for what she hopes will be her last big battle.

"My biggest, absolute biggest thing is the future." The barest hint of a tremble enters Heike's voice as she continues, "The hardest thing for me is if something happened to me and he was just sitting back here on his own, living with a co-resident. I wouldn't want that for him."

She's putting her considerable efforts into creating a share house where people with and without disabilities live together. Ben would have professional care, but he wouldn't be shut away. Living amongst the broader community would provide Ben with the experience of typical adult behaviour. And it would help ensure that carers aren't able to let standards slip while no one is watching.

Breaking the isolation experienced by many people with disability is what Heike sees as the key to ensuring her son's basic quality of life when she can no longer provide his care. She has no second thoughts about where the Paralympics should go from here.

"I think what we do when we separate people is create more handicaps." Heike says. "For me, inclusion is the ultimate."

For Heike, integration is where the last hope for people like Ben lies and the world's peak sporting event could lead the way.