TORONTO —; An Ontario family is standing up to OHIP in the first day of their appeal, after it denied funding for their seven-year-old son to get a surgery in the U.S. they say could be life changing.
Alesandro Ciampa has cerebral palsy and is scheduled for Selective dorsal rhizotomy surgery in St. Louis, surgery that’s expected to allow him to walk without a walker.
“I want to get stronger and I want to walk by myself,” he said.
OHIP is refusing to pay for the costly surgery because an Ontario specialist hasn’t signed off on it.
READ MORE: Families fighting for OHIP funding for U.S. surgery redouble their efforts
“I’m feeling nervous,” said Alesandro’s mother, Shana Ciampa, before the hearing in which she represented herself.
Ciampa argued that they, and at least a half dozen other parents, can’t get a specialist to even see their children, let alone sign the forms.
OHIP denies that and their witness said they’ve just changed the process for patients.
“We have to streamline procedures so we can see them effectively,” testified Dr. Sheila Singh, a pediatric neurosurgeon at McMaster Children’s Hospital.
That contradicted what she sent in an email to Ciampa in July.
READ MORE: Families fighting for childrens’ surgery rejected by OHIP
Singh wrote that they no longer feel SDR is a “reasonable option” and that families should “seek other available treatment options.”
“I absolutely do not think I would have an objective assessment of my child,” said Ciampa.
Another parent appealing OHIP testified they are in the same situation.
“You are caught in this perpetual loop, OHIP needs a specialist but no specialist will sign off on it, and they all seem to be working together,” said Chad Mitchell.
READ MORE: Outpouring of support after Global News story about boy who needs surgery
The Health Services and Appeal Review Board also heard that just last week OHIP approved a child for SDR without a specialist’s signature.
In that case, the parents provided physician notes indicating their son was a good candidate.
The notes were written by one of the doctors who refused to sign the OHIP form and odds are against winning an appeal.
Global News researched decisions of the Health Services and Appeal Review Board over the last five years.
READ MORE: Doctors and health minister at odds over cerebral palsy surgery, families not getting funding
On average 87 per cent of appeals were denied. To date in 2015, 90 per cent have been denied.
“It’s unfair, inequitable. The appellants are self represented, not represented by lawyers, OHIP is represented by lawyers,” said Perry Brodkin, a former OHIP lawyer.
Ciampa said she’s fighting OHIP on principal.
“I’m doing it because its unfair and it’s unfair to other kids in the same situation,” she said.
READ MORE: Ontario family raising $100,000 for surgery so 3-year-old boy can walk
The family has fundraised tens of thousands of dollars but needs well over $100,000 to cover everything.
It could take weeks for the family to get a decision.
The surgery is scheduled for Dec. 2 and Alesandro said he doesn’t want to wait any longer.
“I want to be like the other kids on the climbers, stuff like that,” he said.