Shuswap Children’s Association physiotherapist is Estera Hazlewood is teaching four-year-old Oli Brooks how to push a button on an adaptive car. The association is unable to provideOli with the number of hours he requires for his complex needs. (Zev Tiefenbach photo)

Provincial funds not adequate for four-year-old boy’s health needs

Only Shuswap Children’s Association funded to help, but not enough for young Oliver

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.

Related: Need outstrips funds at Shuswap Children’s Association

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.

Related: Shuswap Women Who Wine host community giving event

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.”


@SalmonArm
barb.brouwer@saobserver.net

Like us on Facebook and follow us on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Sweetheart of Sam Steele Mia Miles and Princess of Sam Steele Madeline Gauthier
Cranbrook Youth Ambassadors crowned

All candidates will be given the opportunity to participate as part of a wider ambassador team, led by Sweetheart of Sam Steele Mia Miles and Princess of Sam Steele Madeline Gauthier

B.C. Liberal leader Andrew Wilkinson, B.C. NDP leader John Horgan and B.C. Greens leader Sonia Furstenau. (Black Press Media)
OPINION: Examining preliminary results from the 2020 BC Election

Some thoughts to ponder as British Columbia awaits the final results from mail-in ballots

Tom Shypitka, pictured with his campaign team. on election night, Oct. 24, 2020. Trevor Crawley photo
Shypitka wins second term; BC NDP cruise to majority

“Election Days,” rather than “Election Day,” may be the more accurate term… Continue reading

DriveBC map.
Motor vehicle incident reported on Highway 3/95 west of Cranbrook

Another motor vehicle incident roughly eight kilometres west of Cranbrook has reduced… Continue reading

Highway closed near Moyie due to vehicle incident, according to Drive BC.
Highway 3/95 near Moyie closed due to vehicle incident

Highway 3/95 east of Moyie is closed in both directions due to… Continue reading

NDP Leader John Horgan celebrates his election win in the British Columbia provincial election in downtown Vancouver, B.C., Saturday, Oct. 24, 2020. THE CANADIAN PRESS/Jonathan Hayward
Horgan celebrates projected majority NDP government, but no deadline for $1,000 deposit

Premier-elect says majority government will allow him to tackle issues across all of B.C.

FILE – Prime Minister Justin Trudeau greets Premier John Horgan during a press conference at the BC Transit corporate office following an announcement about new investments to improve transit for citizens in the province while in Victoria on Thursday, July 18, 2019. THE CANADIAN PRESS/Chad Hipolito
Trudeau congratulates Horgan on NDP’s election victory in British Columbia

Final count won’t be available for three weeks due to the record number of 525,000 ballots cast by mail

Comedic actor Seth Rogen, right, and business partner Evan Goldberg pose in this undated handout photo. When actor Seth Rogen was growing up and smoking cannabis in Vancouver, he recalls there was a constant cloud of shame around the substance that still lingers. Rogen is determined to change that. (Maarten de Boer ohoto)
Seth Rogen talks about fighting cannabis stigma, why pot should be as accepted as beer

‘I smoke weed all day and every day and have for 20 years’

Provincial Green Party leader Sonia Furstenau speaks at Provincial Green Party headquarters at the Delta Victoria Ocean Pointe in Victoria. (Arnold Lim / Black Press)
VIDEO: Furstenau leads BC Greens to win first riding outside of Vancouver Island

Sonia Furstenau became leader of BC Greens one week before snap election was called

NDP Leader John Horgan elbow bumps NDP candidate Coquitlam-Burke Mountain candidate Fin Donnelly following a seniors round table in Coquitlam, B.C., Tuesday, October 20, 2020. THE CANADIAN PRESS/Jonathan Hayward
Horgan, NDP head for majority in B.C. election results

Record number of mail-in ballots may shift results

Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

The Canadian border is pictured at the Peace Arch Canada/USA border crossing in Surrey, B.C. Friday, March 20, 2020. More than 4.6 million people have arrived in Canada since the border closed last March and fewer than one-quarter of them were ordered to quarantine while the rest were deemed “essential” and exempted from quarantining. THE CANADIAN PRESS/Jonathan Hayward
Majority of international travellers since March deemed ‘essential’, avoid quarantine

As of Oct. 20, 3.5 million travellers had been deemed essential, and another 1.1 million were considered non-essential

Canada’s Chief Public Health Officer Theresa Tam responds to a question during a news conference Friday October 23, 2020 in Ottawa. Canada’s top physician says she fears the number of COVID-19 hospitalizations and deaths may increase in the coming weeks as the second wave continues to drive the death toll toward 10,000. THE CANADIAN PRESS/Adrian Wyld
Canada’s top doctor warns severe illness likely to rise, trailing spike in COVID-19 cases

Average daily deaths from virus reached 23 over the past seven days, up from six deaths six weeks ago

Most Read