Media Release: Powerful National Disability Insurance Scheme (NDIS) video demonstrates the daily disasters faced in the disability sector.
Graham Streets is one of six people to star in a YouTube campaign calling for the Federal Government to implement a National Disability Insurance Scheme (NDIS). The short video, titled Why the Spinal Injuries Association supports an NDIS, was released last week on YouTube.
In the YouTube campaign, Graham shares how his spinal cord injury has taken a life-long effect on his health. He now weighs just 45 kilograms.
People with permanent, physical disabilities in Australia are really struggling. There are not enough appropriate supports and services in place to allow people to get back into the community and contribute to society. At the moment I can only afford to have my carer help me out of bed in the morning and back into bed at night, so it’s pretty tough going for me during the day. I don’t get to have any lunch. — Graham Streets
Spinal Injuries Association CEO Mark Henley said as well as Graham’s story, the video also highlighted the challenges faced by four other members of the organisation and a member’s mother, who has been caring for her son for the past 35 years. These people also stated how an NDIS would improve their quality of life.
While many of our members and clients lead productive, fulfilling lives, too many are in crisis and it’s time for much-needed change. With the Productivity Commission handing down its final report into an NDIS on 31 July, we need as many people as possible to view our video and sign the online petition for an NDIS at www.spinal.com.au/ndis. People power can really make a difference – it could transform the lives of people with disabilities and those that often support them – their family and loved ones. — Mark Henley
Mark said recent figures from National Disability Services showed that if just 2% of people with a disability had appropriate support and could come off the pension and return to work, there would be a $2.5 billion injection into the economy.
An NDIS wouldn’t just signal major social reform, it also makes good, economic sense. — Mark Henely
Currently, 1.4 million Australians have a serious disability, and unfortunately, a disability can be sustained in an instant. By 2030, there will be around 2.9 million people with a serious disability in this country. On top of those numbers, consider the family and friends who are often providing personal care to people with disabilities and it highlights the enormity of the issue. — Graham Streets
If implemented, a National Disability Insurance Scheme (NDIS) would begin in stages from January 2014. It would provide appropriate financial support for people with physical disabilities sustained either at birth (for example, cerebral palsy) or at any stage during their life (for example, a spinal cord injury).
This support would allow people to fund their personal care needs, therapy, aids and equipment, home modifications, and employment training, — expenses that they now have to pay for on top of their everyday — living expenses that all Australians face.
Simon: We have our next guest on the phone there. Graham Streets is an enterprising man who has experienced some setbacks in life. Graham had to struggle to get anything he has after a motorbike accident in 1994 saw him become a quadriplegic. He had his own electrical contracting business and things were busy but pretty good. Graham had to struggle to get everything he has since he was a sole driver of a vehicle in Queensland and there is no insurance for the driver in a single vehicle accident. Graham is on the phone to tell us about his struggle and what he is doing to get things changed. Welcome to the program Graham.
Simon: Graham, let’s start by telling us about your experience of the legal side of your case as far as your application for compensation and what your lawyer advised you?
Graham: Currently in Queensland there is no automatic financial cover for people injured in a single vehicle accident as you mentioned. On the Gateway Arterial Highway where I had my motorcycle accident the corner was poorly constructed. Several people had lost their life on this corner. When looking into compensation I was told I had a good chance of winning several million dollars, that it would cost around a million dollars to launch such a law suit against the Department of Main Roads. My lawyers weren’t willing to risk fronting that kind of money and I didn’t have it.
Simon: Suzanne, you’ve got the next question…
Suzanne: What did this mean for you and your business?
Graham: After 11 months of recovery and rehabilitation in the Princess Alexandra Hospital, I was unable to continue working, my electrical business pretty much folded. I sold off some stock and gave most tools and equipment to friends in the trade.
Suzanne: This placed a lot of burden on your family?
Graham: Yes, for most people with a disability support and assistance comes mainly from family and friends. A spinal cord injury like any disability is not only a difficult time for the person who receives the injury. Often family and friends also struggle and the emotional and financial burdens can be massive. I had few options but to move back in with my aging parents with my Mother as my primary carer. Instead of me looking after them in their retirement years they were having to look after me again at their own cost.
Suzanne: Is there any funding available for you to apply through the State Government for personal carers?
Graham: There was and there currently is, however these waiting lists are long and many languish on them for years and years, only a small percentage secure that kind of permanent funding.
Suzanne: Graham, tell us about your mobility please?
Graham: I’m a C4 quadriplegic. I rely on a power-chair and require assistance with getting into and out of bed, showering, meal preparation, basically a fairly high level of personal care needs.
Suzanne: Tell us about your time in Rehabilitation and did you meet people with similar issues to your own?
Graham: Yes, as they say there’s always someone worse off and that can help acceptance of a disability through rehabilitation and while counselors and such are great, talking with others who actually are going through the same problems, and facing the same day-to-day issues as you is a great comfort as well.
Simon: You’re with Suzanne and Simon this afternoon and you’re listening to Ipswich Connections on Phoenix Radio online. We are going to have a quick music break and when we come back in a few minutes we’ll continue talking with Graham and we’re going to talk about life with a spinal injury and we might cover a couple of other things.
Simon: Welcome back to Ipswich Connections. A radio program committed to giving people with disabilities a voice. You’re listening to Phoenix Radio online. This program is supported by University of Southern Queensland and Cerebral Palsy League of Queensland. We are talking with Graham Streets who became a quadriplegic back in 1994 from a motor vehicle accident. Graham, so what’s the one thing that is missing for you to have a relatively normal life?
Graham: Simon, I’d have to say the ability to drive is something I miss terribly. Getting around to see friends, getting re-connected in the local community, without having to rely on maxi taxis and that sort of thing. It can get quite expensive, public transport and getting around that way.
Simon: Yes and the fact, because you have to rely on public transport, it’s not always there when you want it. They get delayed through obviously no fault of their own, it’s just the nature of the work that they do too.
Graham: Yes exactly, it also makes it hard in that respect to hold down a full time job.
Simon: Yes, Yes that’s right. Okay, Suzanne…
Suzanne: What did Australian’s disability support system do for you?
Graham: Suzanne, I was able to receive a disability support pension and after eight years on a constant battle and struggle to get where I am today, the Queensland Department of Housing supplied me with housing, and I have permanently funded carers who assist me into and out of bed morning and night. I’m one of the lucky ones really.
Suzanne: Did you trial any respite centres?
Graham: There’s a fantastic four bed respite centre in Petrie called Backstop House, they take four wheelchair bound people at one time. It’s a great temporary break for my parents.
Suzanne: What needs to be done to change the laws?
Graham: Currently there’s a big push to bring in a scheme called NDIS, a National Disability Insurance Scheme.
Simon: Yes and with that, it’s a no-fault scheme where it doesn’t matter how you acquired your disability, you’ll always have the support that’s needed.
Graham: Yes it’ll be a great safety net whether you’re born with, or acquire a disability be it spinal cord injury, or any kind of disability later in life.
Suzanne: Is this the same throughout the whole country?
Graham: Yes it would be a nation-wide scheme that will automatically cover all Australian residents.
Suzanne: I believe you have developed some new skills and are now employed?
Graham: Yes, I currently work from home part-time as an accountant and I also do a bit of web design and I’m a webmaster.
Simon: So give yourself a plug, tell the people how to get in contact with you.
Graham: Well, my domain name is streetsie.com
Simon: Graham, we certainly wish you all the best and if you’ve got something happening there please drop us a line, give us a call, say hello, don’t be a stranger, and we’ll certainly be talking to you again sometime in the future.
Graham: Thankyou for your time Simon and Suzanne.
Simon: That was Graham Streets talking on his life with a spinal injury and what needs to be done to see that others in severe cases when you acquire a severe disability you have some opportunities there with the NDIS scheme that’s coming in. Thankyou very much for listening in today. You’re listening to Ipswich Connections on Phoenix Radio, supported by USQ, and our program Ipswich Connections is with the Cerebral Palsy League.
The following article by Korin Helbig posted in the Courier Mail reaching millions of readers on January 4th 2011 emphasizes the life-long benefit of early funding and support after spinal cord injury.
Vicki Field and Graham Streets were robbed of their mobility in horribly similar circumstances 16 years ago. But when attempting to rejoin society, one would be bitterly failed and the other well served by Australia’s disability support system, exposing its ad hoc structure.
Mr Streets’ motorbike careered off Brisbane’s Gateway Motorway near Nudgee in light rain in 1994, causing him to think: ”You’ve done it this time.”
Courier Mail newspaper article
Then 26 and with his own successful electrical contracting company, Mr Streets crashed head-first into an embankment at 100km/h, severing his spinal cord. He left hospital, after 11 months of rehabilitation, paralysed from the chest down with minimal movement in his upper arms.
The State Government’s overstretched disability budget could offer little for Mr Streets, so, like thousands of other disabled people surviving on pensions, he was forced to move in with his parents, living at their Narangba home.
”That was a huge mistake but there was no other option,” Mr Streets said. ”Being at Narangba was very isolating. There were no footpaths or anything. 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.”
Mr Streets said he ”put his life on hold” for eight years as he languished on the public housing waiting list but had to act after he found his mother crying in the living room. ”It just hit me like a sledgehammer – it was me. The role of being my primary carer was killing her,” he said.
Mr Streets went to a temporary respite centre and refused to leave until he was granted a state-funded rental and about 40 hours of personal care a week.
He now lives independently at Bray Park and works as an accountant and web designer, but he has serious health problems and has lost 25kg in four years.
His largely housebound existence is a far cry from the lifestyle of Ms Field, one of only four people chosen for a pilot support program after she crashed her car into a tree on a rural road in Logan, south of Brisbane, in 1994.
Then 18, Ms Field suffered a shattered C6 vertebrae that left her a quadriplegic. She spent 14 months in rehabilitation.
But, under the trial, she was offered financial support and a carer, which enabled her to live independently on campus at the University of Queensland while studying law and economics.
Vicki later moved into a state-owned West End unit and started working full-time for the state government, further cementing her independence.
Spinal Injuries Association chief executive officer Mark Henley believes the two cases underscore the need for a national no-fault disability insurance scheme, which he said would provide all disabled people with the support Ms Field was given.
”If people have the right piece of equipment and the right personal support, their likelihood of maintaining a good quality of lifestyle is much higher, they are less reliant on the health system and more likely to be able to contribute to society,” he said.
The proposal is under Productivity Commission investigation and has attracted 604 submissions – more than any other inquiry ahead of a draft report due out next month.
Mr Henley said the scheme would help 129,000 disabled Queenslanders who did not get the long-term support they desperately needed.
For Mr Streets, the scheme is imperative to relieve the burden on elderly carers. ”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 at home alone,” he said.
”(It’s) something no family member should be burdened with.”
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.
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.