Steve Caines of Orewa says ACC’s decision not to give him a ReWalk leaves him back on a wheelchair or scooter. Steve spent three years learning to walk in this ReWalk exoskeleton photo, Cheril Clarke
Steve Caines of Orewa, who is paralysed from the chest down, is locked in a battle with ACC over its refusal to provide a piece of equipment that enables him to walk independently.
ACC funded Steve to learn to use the ReWalk equipment – a battery powered exoskeleton – which he did successfully over a three-year period.
Towards the end of the training, he applied to ACC to obtain a ReWalk, and says he was gutted to be turned down.
“What is the point of funding three years of training, paying for me to be in a position where I can walk again, and then taking away that option?” Steve says. “ACC clearly don’t want me to walk again – they say that my callipers and crutches, or a wheelchair or scooter are enough. Find me anyone who wants to spend life in a wheelchair – there is no one. I have had a taste of an independent life that puts less demand on my body and the health system, and now it has been snatched away.”
Thirteen years ago, a motorcycle accident left the 50-year-old engineer paralysed from the chest down. Ever since he has been fighting to get back on his feet.
The health professionals he works closely with, including a number of doctors, physiotherapists and occupational therapists, support him in his desire for a ReWalk, saying the benefits to a person’s physical and mental health of standing upright are significant.
Several of them note the importance Steve places on being able to stand, and the positive effects of this on muscle strength, bone density and the digestive system compared with remaining seated in a wheelchair.
Steve says that walking using leg callipers, as he has since the accident, puts a lot of strain on his body, especially the shoulders, whereas the ReWalk takes the load more effectively.
“I learned to use callipers because 13 years ago they were the only option,” Steve says. “Technology has moved on and I welcomed it.”
Mastering the ReWalk required the fitness, focus and commitment of an athlete and Steve is the first New Zealander to successfully see a ReWalk trial to completion. He says he was determined to tick every box that ACC asked of him in the trial, and in many cases he exceeded their requirements. He was signed off by his physios as having successfully completed the ReWalk trial, including being able to walk independently, in July.
However, ACC appears not to be relying on this report, but rather on the findings of other experts.
ACC spokesperson James Funnell says specialists at the Auckland Spinal Unit have told ACC they do not believe an exoskeleton is a suitable aid for someone with Steve’s type of spinal cord injury.
“The spinal unit believes that training programmes for Steve should not focus on walking, and we have informed him of this,” James says. “Steve has not yet been able to use the exoskeleton independent of therapist supervision.”
James also cites safety concerns around the demands the ReWalk places on Steve’s upper body, and says ACC believes there is a high risk of him falling while using it.
Steve refutes these claims, saying the goal posts keep changing. “It comes back to this – if this system was not working for me, why would ACC continue to fund me through the trial, including after that spinal unit report was written, and then turn around and say it’s unsafe? I only ever fell in the exoskeleton in the first few months while I got the body position right. And I have used it independently on many occasions. That is why I’m so excited about the prospects it holds for my future.”
The final report by Steve’s physiotherapists Neuro Rehab Results, dated July 27, notes that with the ReWalk Steve can walk in his local community safely and independently. “He can walk over even and uneven surfaces. He can walk from home to the local community and access buildings such as the Post Office. Whilst he is able to perform some of these tasks using callipers, it results in increased strain on his shoulders compared to use of the ReWalk,” the report says.
The report goes on to note the importance that Steve places on the restoration of his walking function. “Over the course of this programme we have explored other options with Steve and after weighing the options we feel strongly that the ReWalk is the best option,” the report says.
The ReWalk costs around $115,000 but ACC says the decision not to fund it for Steve has nothing to do with cost. “We fund a considerable range of very expensive equipment for our clients where it is deemed appropriate, safe and beneficial.”
James says to date ACC has spent $79,000 on training for independence programmes for Steve but cannot say what percentage of this involved the ReWalk, as it was not individually costed.
Steve says learning to use the ReWalk left him the fittest he has been since his accident and he is afraid of seeing that health decline now that he is back on callipers, a scooter or wheelchair.
“They taught me a whole lot of skills and offered me a way to become an active part of the community again. I can’t believe after all that they would return me to a wheelchair.”