Kids needing OHIP funding for surgery tangled in ‘catchment area’ red tape

With life-changing surgery, Fiona Santos’s daughter could one day walk.

But instead, she’s caught in bureaucratic red tape, which has her bouncing back and forth between doctors and hospitals to get a referral.

After CBC Toronto reported on three-year-old Madison earlier this month, several other parents who have children with Cerebral Palsy (CP) have reached out, including Santos, whose daughter Athena is nine-years-old. 

Athena is a “very good candidate” for Selective Dorsal Rhyzotomy (SDR), according to the St. Louis, Missouri doctor who would perform the surgery — but both McMaster Children’s Hospital and Holland-Bloorview Kid’s Rehabilitation Hospital denied her referral based on “catchment area.”

Athena’s family is turning to crowdfunding to help raise money for the life-changing surgery. (Fiona Santos)

“I feel like I’m being run around in circles,” she said. She needs the specialist referral to get OHIP coverage for the expensive surgery, which is not performed in Ontario.

Ministry ‘not aware of any catchment area barriers’

A letter from McMaster said she should consider an “alternate referral” because she was “out of catchment” and they suggested she try Holland-Bloorview.

Holland-Bloorview said her referral had been “cancelled” because “this client lives outside of our catchment area.”

A catchment area is defined as the geographical area of a city or town served by a hospital or school.

In an email to CBC Toronto, the Ministry of Health wrote that hospitals are prohibited from “restricting or refusing the provision of services to individuals based on the geographic area in Ontario where the individual resides.”

“The ministry is not aware of any catchment area barriers that would exclude patients from obtaining services at either location,” added Joshua McLarnon.

He recommends patients contact the ministry of health if they have been refused service.

Santos said she’s coming up against one barrier after another — and the timeframe for her daughter to get the surgery is running out. As kids with CP grow, their condition worsens.

‘I just want a fighting chance for my daughter.’
– Fiona Santos, mother to Athena who lives with CP

“I just want a fighting chance for my daughter,” she said. “At this point in the game I don’t think I’m going to get the OHIP coverage to fight these guys.”

Like many other parents whose children suffer from CP, Santos is fundraising to send her daughter to St. Louis for the surgery.

Derek Welch, who lives in Kawartha Lakes, is also fundraising to pay for the surgery for his daughter, Taylor. She’s been approved for SDR at the hospital in St. Louis but the family can’t get a referral for OHIP coverage. He said his family doctor has sent two referrals to McMaster but no one has returned their calls.

Taylor has been in a motorized wheelchair since the age of three. Her assessment from the St. Louis hospital said she would be able to walk with a walker after SDR surgery. (gofundme.com)

“Right now, we’re not going to get our hopes up and we’re going to keep fundraising the amount,” he said.

With the surgery, Taylor, who has been in a fully motorized wheelchair since the age of three, could walk with a walker which is “amazing,” says her dad.

Hospitals say they would ‘conduct assessment’

In emails to CBC Toronto, Holland-Bloorview and McMaster said they would not comment on specific cases — but did answer questions about catchment areas.

Hamilton Health Sciences said they care “for patients in Hamilton and across south central Ontario and beyond as a referral centre for specialized programs.” They also said referrals are “reviewed and prioritized based on the unique care needs of each child.”

A letter from McMaster (above) said Athena is outside of the hospital’s catchment area. they recommended trying Holland-Bloorview. The response from Holland-Bloorview (below) also said she was out of the catchment area.

Holland-Bloorview wrote if a patient in Ontario is referred for an SDR assessment it “would conduct the assessment and determine if the child meets clinical criteria.” They added that if a family has a question about their specific referral, they should contact the hospital directly.

Santos said she had “no words” when she heard what the ministry and hospitals told CBC Toronto.

Strong parent support group

Stephanie Visentin’s son was the first Ontario child to have SDR surgery in St. Louis, back in 2014.

After realizing other parents were in a similar situation, she started a Facebook group to help navigate the challenges of SDR and OHIP. It’s a group that has been extremely helpful according to Welch.

SickKids has performed more than 100 SDR surgeries, but stopped the procedure in the early 2000s. At the time, the hospital says it determined the surgery was “no more beneficial than standard orthopaedic surgery for patients receiving long-term follow-up.”

Since then, the hospital along with Holland-Bloorview has been working with the ministry to develop a program where SDR surgery would be performed with follow-up care. The ministry hopes to publish recommendations for public comment in spring of 2017.

She’s suggesting that parents write a letter to the College of Physicians and Surgeons if they are being denied service for SDR assessment, in hope the college investigates.

Catchment areas addressed by ombudsman before

The issue of catchment areas has been brought up before. In 2014, the province’s ombudsman investigated the case of a man who needed rehab after suffering a stroke. He was turned away from three hospitals because he did not live within their geographical catchment area.

At the time, the ombudsman told ministry officials that provincial legislation prohibits hospitals from denying patients service based on where they live.

Christine Elliott, the province’s new patient ombudsman, recommended parents contact the patient-relations team at the hospital, adding that if they are still unhappy with the outcome, her office can try to help.

“I know it can be frustrating not to feel heard or accommodated when it comes to your care or the care of someone you love, especially a child,” she said in a statement to CBC Toronto.

“Voicing complaints is important because it helps identify the bigger issues and prevent others from going through similar experiences.”