Four-year-old Oliver Brooks has climbed hurdles already.
But the ones he faces now will be almost impossible without funding from the province.
Oli was born with Down Syndrome and at eight months was a little bit behind the curve for someone of his age and condition; he was doing very well, had a great appetite and was eating well.
“We were thinking he could possibly live by himself, work and have a driver’s licence,” says Oli’s dad, Zev Tiefenbach. “But at eight months, he developed infantile spasms, a catastrophic form of epilepsy, and began to have seizures with great frequency.”
Tiefenbach says the 50 to 100 seizures a day robbed him of all his developmental progress. He could no longer hold his head up or eat on his own.
For the last three years, Oli has continued to grow physically, but despite trying many medications, a ketogenic diet and CBD oil, his seizures continue unabated. As a result of the seizures, Oli is now legally blind, he’s fully lost the ability to eat, cannot swallow, and is fed five times a day through a gastro-intestinal tube by his mom, Mia Brooks.
“Developmentally he just went backwards and never regained the skills,” says Zev, noting Oli is followed by a neurological team at BC Children’s Hospital in Vancouver, which has meant a great deal of travel to the Coast for consultation and treatment.
Over the past three years, Tiefenbach and Brooks were told to focus on getting the seizures under control and worry about development issues later.
But following an August meeting in Vancouver, the couple felt a lot less hopeful for their son.
“As you get further down the list of medications, the probability of success gets dimmer and dimmer,” Tiefenbach says, pointing out he and Brooks decided to turn to physio, occupational and speech therapy. “We decided that regardless of how he is neurologically, we still want to move forward with him. The long-term goal is to have him eat, walk and have capacity with language, not necessarily talking, but maybe signing, or pointing.”
Tiefenbach says the nurses and therapists in Vancouver told the family that the therapies are are “urgently and profoundly necessary.”
If the family lived on the Coast, he says, they would be able to get all the therapy Oli needs through Sunny Hill Health Centre, in collaboration with BC Children’s Hospital. But he must access the needed services in his home community.
But a Nov. 27 email from the Ministry for Children and Families refutes this claim.
“If this child was in the Lower Mainland, he would not be receiving service through BC Children’s or Sunny Hill Health Centre, but would be receiving it through the appropriate community-based services, supported by MCFD,” reads the email.
In Salmon Arm, the trouble is, Shuswap Children’s Association gets funding for only 15 hours a week of physio and occupational therapy through the Ministry for Children and Families, an amount that would help Oli but is shared with every other child who needs the same services.
Tiefenbach says until recently, Oli was getting an appointment every six weeks for about an hour. Lately his physiotherapist has been helping Oli access other services.
“When organizations are so dramatically and tragically underfunded, they’re forced to make decisions that don’t necessarily do well for their clients.”
Tiefenbach says he does not understand why Oli’s treatment cannot be covered through the Ministry of Health, which has a much larger budget.
“The needs that he has are a result of his medical condition and his capacity to exist in the world is dependent on the skills he would receive from the services,” he says, also questioning the way in which regions are funded, with some smaller areas receiving more than the large Shuswap region where Salmon Arm is one of the fastest-growing communities in the province.
“There’s no rhyme nor reason to the funding,” confirms Shuswap Children’s Association Executive Director June Stewart. She says that one community, which wishes to remain anonymous for fear of losing their funding, serves 25,000 people overall and gets 1,872 hours of physio a year, while the local association serves an overall population of more than 45,000 and gets 783 hours a year.
The Nov. 26 email describes the “equity-based model” the ministry uses to distribute services.
“This model is informed by socio economic indicators, such as total child population, Indigenous population, health and other indicators. Factors such as caseloads and waitlist are also considered,” reads the email, pointing out it is difficult to compare communities and organizations because the contracts vary in terms of the number and size of communities being served.
But Stewart says the association reports to the ministry monthly and, in April 2016, the ministry removed waitlist reporting from the forms.
What remains is that the Shuswap Children’s Association is the only organization that is funded for the services Oli needs, so the family’s option now is to pay out of their own pockets.
“We’re very much at a standstill, we’re not a high-income family,” says Tiefenbach, pointing out there are three other children in the family and while they love their son dearly and do everything for him now, there will come a point either through old age or their own incapacitation, Oli will require care from the public system. “The investment that the public sector could make now in his life by providing him with adequate therapy will pay huge dividends down the road.”
The ministry notes “that a provincewide request for proposals last week saw $45,000 in new funding added to Salmon Arm for a total of $64,568 in direct prevention services for children and families.
But Stewart, who is currently filling in an application for funding, says there is no indication the money will be going to the Children’s Association. It’s a competitive process, she says.
“This funding would not be for early intervention services such as occupational therapy or physiotherapy,” says Stewart. “I am grateful money is coming to this area but it doesn’t fix my waitlists.”