Families taking a stand
Young people with partial spinal-cord injuries can benefit from intensive rehab, but OHIP won’t pay
Ben Wood walked up four steps two weeks ago, the first time he’s done so since he jumped from a trampoline into a swimming pool three years ago, damaging his spinal cord and leaving him paralyzed from the chest down.
The gains the 17-year-old Cobourg teen has made haven’t been easy and they haven’t been inexpensive. But they have been impressive. Since leaving rehab in a wheelchair a few months after his accident, Ben has received intensive neurological physio- therapy two or three times a week. Today, he can support his full weight on his legs. He can get around with the aid of a walker and parallel bars installed in the family home. Using crutches is his current focus, and his mother, Sandy, believes more improvement is possible. But to the Woods’ dismay, OHIP doesn’t cover intensive out-patient physio for youngsters under the age of 18.
In fact, there are no publicly funded services for children with injuries like Ben’s.
That means the weekly cost of his therapy — as much as $550 — must be raised entirely through fundraising efforts. Ben Woods isn’t alone. Five years ago, when Ian McAdam was 13, a mountain-bike accident left him with a spinal-cord injury. His parents, Ingrid and Gary, exhausted their $50,000 lifetime insurance limit and savings to pay for specialized physio three times a week, up to $2,000 a month. They too rely on the generosity of others.
Likewise, Fraser Jansen fell off his bike in 2006 when he was 14. The first year his physio was paid for because he took part in a study. After that, the family turned to donations. Fraser’s gains have been remarkable. Today, one has to look closely to detect his slight limp. He’s studying engineering at Laurentian University.
In a country that boasts universal health care, the families of young people like Ben, Ian and Fraser are frustrated, and angry, that their children are denied fully supported medical services that could give them mobility, independence and better futures. Each year, hundreds of adults in Ontario suffer spinalcord injuries, but relatively few young people under 18 do. Even fewer — around six a year — have an “incomplete” injury, meaning that not all the nerves in the spinal cord are severed. They have most to gain from intensive rehabilitation — and they include Ben, Ian and Fraser.
Adults who suffer spinal-cord injuries are well-served, with five rehab centres in Ontario. When an adult with an incomplete injury is discharged, he or she can continue the necessary physiotherapy as an outpatient, paid for by the province, although there are waiting lists.
But why not children? Unlike an adult centre, a children’s rehab facility may see one or two incomplete injuries a year, which makes a big difference in services offered.
“One of the things that comes with a big centre is that you have the luxury of a high volume of patients and you can begin to understand some of the nuances of what people need or who’s going to improve,” says Dr. Cathy Craven, a physiatrist and spinal-cord specialist at the Toronto Rehabilitation Institute. “When you see 250 patients a year you evolve very differently than if you see five or six.”
Paradoxically, youngsters may have the best prospects for improvement.
“What’s unique about these teenagers is that most of them are cognitively intact (their brain function remains unaffected),” says Craven. “The kids who have the most neu- roplasticity (the brain’s ability to form new neural pathways following injury) and are most likely to benefit from this high intensity, high volume of rehab intervention are the ones who don’t have access to the service. It’s criminal.”
She makes a good case for intensive rehabilitation: “Returning to walking makes a difference, even if they only walk in their household. It’s usually the difference between employment or not, using a public bathroom independently or not, being able to use a bank machine. These are really important outcomes.”
Craven is assembling data on 10 youngsters under 18 to present to the rehabilitation panel of the Ministry of Health. Her findings so far mirror U.S. data that suggests that young people with incomplete injuries benefit from a minmum of 120 to 140 appointments.
THAT BEN, IAN AND FRASER are getting the treatment they need is largely because of Nick Shoenhoff, who suffered a serious though incomplete spinal-cord injury in a snowboarding accident in 2005, when he was 13. Diane Talbot-Shoenhoff, an Oakville mother of two, says her family were abandoned by the system after Nick left rehab. “At nine months we were given a prescription for a power chair and told there was nothing else they could do.” Talbot-Shoenhoff wasn’t buying it. She set to work learning about incomplete spinal-cord injury, which convinced her that specialized neurological physiotherapy was the way to go. The problem is that it isn’t available. “In Ontario, there’s no specialized neurological rehab available for patients under the age of 18,” she says. “The reality is there is no specialized outpatient rehab for children with spinal-cord injuries once they leave hospital. After Nick left rehab, the family received a $1,500 grant from the Rick Hansen Foundation’s Wheels in Motion Fund. Support also came through Gerald Shoenhoff’s workplace insurance benefits. And Talbot- Shoenhoff had become a knowledgeable parent activist, and soon parents were calling her for advice and information. That led to the formation of Support in Motion (supportinmotion.ca), headed by Talbot-Shoenhoff, which pays for the physio of Wood, McAdam and Jansen, and will fund any Ontario child with an incomplete spinal-cord injury who shows potential. Craven is on the advisory board. The Canadian Paraplegic Association offered early support before SIM received charitable status. (The association is limited in what it can do because its mandate extends only to adults with spinal-cord injuries.) Melodie Jansen, Fraser’s mother, says SIM has been crucial: “There’s nothing for that young adult, when its critical, whether they’re going to make it or break it in life. Because of Support In Motion we were able to carry on.” Sandra Wood echoes this: “Going to physio for us can be summed up with the word ‘hope.’ ” And how is Nick Shoenhoff doing after his five years of intensive physiotherapy? Just fine. Today, the 21-year-old student walks with the aid of one cane, using a wheelchair only for distances. He’s studying Life Sciences at McMaster University. And — no surprise — he is thinking about earning a PhD one day in rehabilitation medicine.