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)

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

Interior Health reported 79 new cases of COVID-19 and two new death in the region Friday, Jan. 22, 2021. (Ben Hohenstatt/Juneau Empire)
79 new COVID-19 cases, two deaths reported in Interior Health

Both of Friday’s deaths were both recorded at long-term care homes

Vancouver Giants defenceman Bowen Byram could be playing for Colorado when the NHL resumes play. (Rik Fedyck/file)
Cranbrook product Bowen Byram makes NHL debut with Avalanche

Highly touted prospect marks first pro game following World Junior tournament in Alberta

Centre 64 in Kimberley. Bulletin file
Kimberley’s Centre 64 receives grant for building improvements

The Kimberley Arts Council/Centre 64 has just received notice that their grant… Continue reading

Teck sends impacted ground water from the former Sullivan Mine operations to the Drainage Water Treatment Plant on the St. Mary River. Photo courtesy Teck.
Teck will hold further information sessions on ground water issues in Kimberley

Ryan Peterson from Teck made a presentation on ground water issues to… Continue reading

Kootenay-Columbia MP Rob Morrison speaks during Question Period in the House of Commons. File photo.
MP Morrison calls Keystone XL permit cancellation ‘devastating news’

Kootenay-Columbia MP reacts to the Conservative Party’s removal of a controversial Ontario MP

Thursday, Jan. 28, 2021 is International Lego Day. (Jenna Hauck/ Chilliwack Progress)
Unofficial holidays: Here’s what people are celebrating for the week of Jan. 24 to 30

Lego Day, Talk Like a Grizzled Prospector Day and Puzzle Day are all coming up this week

A 75-year-old aircraft has been languishing in a parking lot on the campus of the University of the Fraser Valley, but will soon be moved to the B.C. Aviation Museum. (Paul Henderson/ Chilliwack Progress)
Vintage military aircraft moving from Chilliwack to new home at B.C. Aviation Museum

The challenging move to Vancouver Island will be documented by Discovery Channel film crews

A video posted to social media by Chilliwack resident Rob Iezzi shows a teenager getting kicked in the face after being approached by three suspects on Friday, Jan. 22, 2021. (YouTube/Rob i)
VIDEO: Security cameras capture ‘just one more assault’ near B.C. high school

Third high-school related assault captured by Chilliwack resident’s cameras since beginning of 2021

FILE - In this Feb. 14, 2017, file photo, Oklahoma State Rep. Justin Humphrey prepares to speak at the State Capitol in Oklahoma City. A mythical, ape-like creature that has captured the imagination of adventurers for decades has now become the target of Rep. Justin Humphrey. Humphrey, a Republican House member has introduced a bill that would create a Bigfoot hunting season, He says issuing a state hunting license and tag could help boost tourism. (Steve Gooch/The Oklahoman via AP, File)
Oklahoma lawmaker proposes ‘Bigfoot’ hunting season

A Republican House member has introduced a bill that would create a Bigfoot hunting season

Economic Development and Official Languages Minister Melanie Joly responds to a question in the House of Commons Monday November 23, 2020 in Ottawa. THE CANADIAN PRESS/Adrian Wyld
Federal minister touts need for new B.C. economic development agency

Last December’s federal economic update promised a stimulus package of about $100 billion this year

Join Black Press Media and Do Some Good
Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

FILE - In this Nov. 20, 2017, file photo, Larry King attends the 45th International Emmy Awards at the New York Hilton, in New York. Former CNN talk show host King has been hospitalized with COVID-19 for more than a week, the news channel reported Saturday, Jan. 2, 2021. CNN reported the 87-year-old King contracted the coronavirus and was undergoing treatment at Cedars-Sinai Medical Center in Los Angeles. (Photo by Andy Kropa/Invision/AP, File)
Larry King, broadcasting giant for half-century, dies at 87

King conducted an estimated 50,000 on-air interviews

BC Coroners Service is currently investigating a death at Canoe Cove Marina and Boatyard in North Saanich. (Black Press Media File)
Drowning death in North Saanich likely B.C.’s first in for 2021

Investigation into suspected drowning Monday night continues

Kimberly Proctor, 18, was murdered in 2010. Her family has spent many of the years since pushing for a law in her honour, that they say would help to prevent similar tragedies. (Courtesy of Jo-Anne Landolt)
Proposed law honouring murdered B.C. teen at a standstill, lacks government support

Ministry of Mental Health and Addictions has concerns with involuntary detainment portion of act

Most Read