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

Just Posted

Two volunteers work to sieve a sample of sand and ocean water through a filter, capturing any potential microplastics. (Courtesy of Ocean Diagnostics)
Victoria startup making waves in microplastics research

New products from Ocean Diagnostics will make research faster, more affordable

Island Savings kick-starts the Equipped to Heal campaign with $120,000. (Courtesy Victoria Hospitals Foundation)
Latest Victoria Hospitals Foundation campaign targets $1M for mental health

Goal is to outfit new 19-bed unit at Eric Martin Pavilion

Willows Beach in Oak Bay. (Black Press Media file photo)
Seven days of sun set to shine on Greater Victoria

Special weather statement warns of higher than usual temperatures

Hot rods, rad rods, muscle and sports cars spanning the decades made their way in a parade from North Saanich to Victoria on June 19. (Kiernan Green/News Staff)
PHOTOS: Classic cars cruise Saanich Peninsula in advance of Father’s Day

Retirement home residents from North Saanich to Victoria treated to a spectacle of hot rides

Chef Trevor Randle leads a June 21 online cooking featuring recipes – beef zesty lettuce wraps, blueberry strudel and blueberry spritzer. (Courtesy We Heart Local BC)
Free online cooking course explores B.C. blueberries and beef

Chef Trevor Randle calls them the province’s most flavourful foods

Jesse Roper tackles weeds in his garden to kick off the 2021 season of What’s In My Garden Man? (YouTube/Whats In My Garden)
VIDEO: Metchosin singer-songwriter Jesse Roper invites gardeners into his plot

What’s In My Garden, Man? kicks off with the poop on compost

FILE – Most lanes remain closed at the Peace Arch border crossing into the U.S. from Canada, where the shared border has been closed for nonessential travel in an effort to prevent the spread of the coronavirus, Thursday, May 7, 2020, in Blaine, Wash. The restrictions at the border took effect March 21, while allowing trade and other travel deemed essential to continue. (AP Photo/Elaine Thompson)
Feds to issue update on border measures for fully vaccinated Canadians, permanent residents

Border with U.S. to remain closed to most until at least July 21

A portion of the George Road wildfire burns near Lytton, B.C. in this Friday, June 18, 2021 handout photo. THE CANADIAN PRESS/HO, BC Wildfire Service *MANDATORY CREDIT*
Blaze near Lytton spread across steep terrain, says BC Wildfire Service

Fire began Wednesday and is suspected to be human-caused, but remains under investigation

Blair Lebsack, owner of RGE RD restaurant, poses for a portrait in the dining room, in Edmonton, Friday, June 18, 2021. Canadian restaurants are having to find ways to deal with the rising cost of food. THE CANADIAN PRESS/Jason Franson
Canadian restaurateurs grapple with rising food costs, menu prices expected to rise

Restaurants are a low margin industry, so there’s not a lot of room to work in additional costs

A Lotto 6/49 ticket purchased in Parksville for the June 19, 2021 draw is a $3M winner. (Submitted photo)
Winning Lotto 6/49 ticket worth $3M purchased on Vancouver Island

Lottery prize winners have 52 weeks to claim jackpot

Cpl. Scott MacLeod and Police Service Dog Jago. Jago was killed in the line of duty on Thursday, June 17. (RCMP)
Abbotsford police, RCMP grieve 4-year-old service dog killed in line of duty

Jago killed by armed suspect during ‘high-risk’ incident in Alberta

The George Road wildfire near Lytton, B.C., has grown to 250 hectares. (BC Wildfire Service)
B.C. drone sighting halts helicopters fighting 250 hectares of wildfire

‘If a drone collides with firefighting aircraft the consequences could be deadly,’ says BC Wildfire Service

Barbara Violo, pharmacist and owner of The Junction Chemist Pharmacy, draws up a dose behind vials of both Pfizer-BioNTech and Oxford-AstraZeneca COVID-19 vaccines on the counter, in Toronto, Friday, June 18, 2021. An independent vaccine tracker website founded by a University of Saskatchewan student says just over 20 per cent of eligible Canadians — those 12 years old and above — are now fully vaccinated. THE CANADIAN PRESS/Nathan Denette
At least 20% of eligible Canadians fully vaccinated, 75% with one dose: data

Earlier projections for reopening at this milestone didn’t include Delta variant

Most Read