National Disability Insurance Scheme

On the eve of the Spinal Injuries Association’s 2010 AGM, members Vicki Field and Graham Streets joined forces with Association CEO Mark Henley and National Disability Insurance Scheme (NDIS) Campaign Manager Fiona Anderson for a media opportunity to call for major social reform that would transform the lives of people with disabilities and those who care for them. Currently, 700,000 Australians need daily personal support, with only a small percentage of people receiving the support they require. 

A NDIS would be a no-fault insurance scheme funded by all taxpayers through general revenue or an extension of the Medicare insurance levy. It would provide funding for essential personal care, therapy, aids, equipment, home modifications and access to the community, education and training for people who acquire permanent disabilities either at birth, or any stage of their life. 

Vicki and Graham met in dreadful circumstances – in the Spinal Injuries Unit at Brisbane’s Princess Alexandra Hospital in 1994 following separate horrific road accidents, in which both sustained quadriplegia. 

Vicki received funding as part of a trial project at the time, which allowed her to live independently, study and work. Graham received no funding and was forced to move back home with his aging parents. It also meant he couldn’t pursue further study, and he continues to battle ongoing health issues. 

Both Vicki and Graham are passionate advocates for a proposed NDIS that the Productivity Commission is currently investigating, with the final outcome to be decided in 2011. 

Keynote Speakers Graham and Vicky

Vicki Field and Graham Streets met in dreadful circumstances – in the Spinal Injuries Unit at Brisbane’s Princess Alexandra Hospital in 1994 following horrific road accidents. 

Vicki was 18 at the time and studying science at University of Queensland, while Graham was a 26-year-old successful small business owner, running his own electrical contracting company. Both were outgoing, active, goal-oriented young people with many future plans. 

Following Vicki’s single vehicle car accident where she sustained C6 quadriplegia and internal injuries, and Graham’s motorcycle accident on Brisbane’s Gateway Arterial, which not only caused C4 quadriplegia, but the top half of his fingers on his left hand were burnt to the bone from the bike’s exhaust, both spent many months (14 for Vicki and 11 for Graham) recovering and rehabilitating in hospital. 

In 1995 when both were physically able to leave the Unit, post-hospital support and assistance was minimal. However, at the time there was a pilot project operating called the Continuum of Care program. Four people were randomly chosen (two from the Spinal Injuries Unit and two people with acquired brain injuries). 

Spinal Cord Injury Life is a Lottery

Like all lotteries, someone has to win and someone has to lose. In this instance, Vicki won and received funding that allowed her to move into temporary housing, before she moved to on-campus accommodation at UQ. The funding also allowed her to receive personal care, equipment and a case manager, who helped her navigate the confusing and bureaucratic minefield of working out what disability and support agencies were available, and what she was entitled to. 

“There’s no way I would have been able to go back to university if I didn’t receive that Continuum of Care funding. I think going back to uni and surrounding myself with people was a really important way forward for me so I could focus on the future,” Vicki said. 

Graduating with a Bachelor of Economics, Vicki eventually moved into her own unit at West End, where she still lives. Working a Senior Program Officer for the Department of Communities (where she has been employed for five years), Vicki said she was forever grateful that she did not have to rely on, or be put in the situation, where she had to ask her family to care for her when she left hospital. 

“It’s just not a workable relationship – your parents should not have to look after you,” Vicki said. 

“Not only was I able to pursue my own opportunities after leaving the Unit because of that funding, but my whole family could continue to live their lives. For example, my mum went back to uni and studied law. How could she have done that if I’d been forced to move back home and become reliant on my family?” 

Graham had no such choices. With “grossly inadequate” assistance available, Graham was forced to move back in with his parents at their property at Narangba, north of Brisbane. 

“That was a mistake, but there was no other option. Being at Narangba was very isolating. There were no footpaths or anything like that. And at that time, personal care nurses didn’t cover the area every day of the week. I couldn’t get people in to assist me, so mum had to do it all herself. And god bless her she did it all, but at her age I’m supposed to be looking after her, not the other way around.” 

When Graham moved back home, his parents were in their mid-60s and about to retire. Those plans quickly changed and Graham’s mother became his full-time carer. 

“The eight years I spent at home meant by the time I finally got into my own house, I was already eight years behind,” Graham said. 

“If I’d had enough funding to get personal care support from the beginning, it would have made the world of difference.” 

“The day I knew I had to move out no matter what was when I came into the living room to ask mum something and found her crying with her head in her hands. She said nothing was wrong but it hit me like a sledgehammer. The reason she was crying was me.” 

“You’re supposed to be looking after your parents in their twilight years, not have them dress you, feed you, clean you up after a bowel accident or be reluctant to go out fearing leaving you home alone. It can be quite humiliating and something no family member should be burdened with.” 

The Long Road to Independent Living

Desperate to live independently and relieve his parents, Graham moved into a temporary respite centre, which he refused to leave until housing was found for him. “I ended up being at the centre for six months. All together I had been waiting eight years for accessible housing.” 

Because Graham only received enough funding when leaving hospital to get a powerchair and for the family home to be made accessible, his long-planned dream of studying electrical engineering at university was quashed. 

“If there had been that support and assistance available for me to go back to uni, then I could have studied and gone back into the workforce. But I didn’t have the choice. I wish I had found employment before I left hospital. I wished a lot of things that I just wasn’t able to do because there was no support available.” said Graham. 

[flv:stateline-ndis-sia.flv 620 347]

While Vicki enjoys an active life with few health problems, Graham has lost almost 25 kilograms in the past four years and his doctors still cannot find the reason why. At the moment his funding via Disability Services enables him to 38.5 hours of personal care a week (from 8.30am-11.30am and 9.30pm-midnight each day). However, over the past three months Graham has been experiencing ongoing pressure areas and has spent much of that time in bed.

“I’ve had to call one of my Personal Support Workers (PSWs) at four o’clock in the morning almost every two weeks of late because I’ll wake up in the middle of the night and be freezing or boiling hot unable to adjust my covers. People with spinal cord injuries can’t regulate their own body temperature, and as I have very limited arm function, I often have to just lay there until my PSW turns up in the morning at 8.30,” Graham said. 

“I need more funding now basically so I don’t cook my kidneys because my covers become too warm. I need that extra bit of assistance overnight so I can actually get a full night’s sleep and not feel as though I’ve been hit by a truck the next day.” 

While Vicki and Graham have had vastly different experiences over the past 16 years, both agree a NDIS is vital for Australians who have, or sustain, a permanent injury or disability. 

Impact of NDIS After Spinal Cord Injury

“What if it was your son, or wife, or mother, or grandfather who had a spinal cord injury or any type of disability. Are you going to drop your job and go and care for them for the rest of their life?” Graham said. 

“Just wait until you need ongoing support to be able to live in an accessible home in an accessible community and you want to go back to work and maintain some semblance of your former life. Then you’ll realise that not only is a National Disability Insurance Scheme an investment for the one in five Australians who have some form of disability, but also for the people who care for them.” 

A National Disability Insurance Scheme would be a no-fault insurance scheme funded by all taxpayers through general revenue or an extension of the Medicare insurance levy. 

As someone who received adequate support to allow her to return to live as independently as possible following her injury, Vicki knows the value of a no-fault program that provides funding for essential personal care, therapy, aids, equipment, home modifications and access to the community, education and training. 

“Wouldn’t you like to know if you were in a situation where you needed personal care support that you wouldn’t have to wait three or four or 10 years before you could get on with your life. Why not reduce that long period for individuals who are waiting to get their own house by giving people what they need when they need it.” Vicki said. 

Resources 

• National Disability Insurance Scheme: http://www.ndis.org.au
• Spinal Injuries Association: http://www.spinal.com.au
• Stateline Video: http://www.abc.net.au/news/video/2010/11/19/3071754.htm