Tuesday, June 25, 2024

Autism groups, families anxious after 2 Ottawa organizations shut down

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Children at Risk says its has been flooded with calls since news emerged that two other organizations that serve families of children with autism are closing their doors

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Summer Dauz loves basketball, but she can’t dribble or take the ball away from another player. For Summer, who has autism, basketball is all about the joy of getting the ball into the basket.

Summer, 15, learned her skills with Ausome Ottawa, a nine-year-old recreational sports program that teaches youth with autism to play sports ranging from soccer to water polo by learning the building blocks of motion.

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“You have to break it down into all the motions,” said Summer’s mother, Nicole Dauz. “At first she couldn’t throw the ball. They would roll the ball on the floor. Everything has to be broken down into very small steps.”

Typically, sports is about competing, Dauz said. “This was just about having fun. Ausome was able to meet the kids where they were.”

Ottawa families and groups that serve children with autism are scrambling after two organizations announced they are closing their doors in the past two weeks.

On April 30, Ausome Ottawa announced its programs were folding that day. “I was in shock,” Dauz said.

This year-to-date, Ausome has received half of the funding it received in the same period last year, founder Liisa Vexler said.

Families of children with autism often receive funding, but the money can only be spent on a prescribed set of services, she said. Meanwhile, inflation has increased the cost of running the one-on-one programs. Giving to small charities has been on the decline generally.

Most of Ausome Ottawa’s funding came from foundations and private and corporate donations. During the pandemic, there were also federal grants. But the federal grants have disappeared and it has been more difficult to get funding from foundations, Vexler said. There was no choice but to close the program, laying off 17 employees, four of them full-time.

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“It don’t know who’s going to fill the gap,” Vexler said. “There’s nothing else like it in Ottawa.”

Meanwhile, the board of directors of Thinking in Pictures Educational Services (TIPES), which offered Intensive Behavioural Intervention as well as an after-school program and other services, announced that it had closed its doors effective April 26. TIPES did not respond to a request for an interview. 

Autism Ontario was surprised by the news that two Ottawa programs have closed, said Ola Kusnierz, its supervisor of educational standards and partnerships supervisor. As it stands, such closures do not appear to be a trend across the province, she said.

“We’re a little on edge. We have our eyes and ears open,” said Kusnierz, who recommends that parents looking for programs reach out to Autism Ontario’s regional office online at https://www.autismontario.com/region/east.

Other Ottawa charities that work with children with autism are also struggling. Children at Risk, which was founded in 1979, learned in April it would be getting 43 per cent less in federal government Canada Summer Jobs grants than last year as grants available return to pre-pandemic levels, executive director Brenda Reisch said.

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The 2023 funding had been cut by about half of what was received in 2021 and 2022. At the same time, the cost of everything needed to run programs, from rent to wages, has increased, she said.

“This just blew us back on our heels. We are fighting the economy.”

Children at Risk has seen two years of operating deficits, tiding itself over with reserve cash, Reisch said. The reserves have been exhausted, and the charity has been trying to re-work budgets and be inventive with existing funding. Children at Risk will be forced to reduce the number of spots at Camp Kaleidoscope, its summer camp, to the lowest level since the camp first opened in 2011.

At one point, Camp Kaleidoscope had enrolment of 60 to 70 children a week. This year, Children at Risk will likely offer weekly spots to only 15 children a week. Families who usually signed up for multiple weeks will only be able to get one week out of the five weeks the camp is offered, Reisch said. Even then, Camp Kaleidoscope still needs to secure $30,000 in additional fundraising.

More and more children are being diagnosed, and more and more programs are at risk, said Kristen Foster, a member of the Children at Risk board and mother of Khalil, 18, who has autism, and Vincent, 3,  who was recently diagnosed.

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“I don’t understand how these charities are closing,” she said. “We have had people reaching out and saying ‘What are we going to do?’ We have been around for 45 years. We can’t close our doors.”

Reisch is appealing to corporate and private donors and hoping to get additional help from federal, provincial and municipal governments. The fundamental problem is that the government has been reliant on charities to do work it is not paying for, she said.

“It’s very tenuous right now. We need funding to keep things going. I have been reaching out to anyone who has ever funded us.”

Irene Labelle assembles a patchwork of programs and family help to get her daughter Maia, 10, through the summer. Typically, Maia attends Camp Kaleidoscope for two weeks.

“It provides her a space where she belongs, she’s happy and she gets the care she deserves,” Labelle said. “She can be independent, she can be social with other children.”

The rest of the summer is covered by Labelle’s vacation time, an older sister and private camp. Camp Kaleidoscope is partly funded at $800. Still, it’s much less expensive than the $5,000 it costs for private camp, Labelle said. Private babysitters with the necessary skills are expensive and hard to find.

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“I rely on that care. I can’t afford $20,000 for the summer,” she said. “The funding is disappearing everywhere.”

Summer Dauz Nicole Dauz Ausome Ottawa autism
Summer Dauz learned her basketball lskills with Ausome Ottawa, a nine-year-old recreational sports program. Her mother, Nicole Dauz, says sports is typically about competing, but this was “just about having fun.” Photo by JULIE OLIVER /POSTMEDIA

Ausome Ottawa was like the “unicorn” of recreation program for teens with autism, Dauz said. The program was free to families except for an annual fee of $45. Dauz has always looked for other opportunities for her daughter Summer, but most programs are limited in what they can offer someone with her abilities. Recreational services for people with autism also decline as children get older.

Basketball helped Summer with balance, gait and hand-eye coordination. Summer also took Ausome Ottawa’s soccer program and moved on to ultimate frisbee, gymnastics, track and “fitness with friends,” which was co-ordinated with students at Nepean High School.

“How can I live in a city of a million people and it be so hard to find programs for my child?” Dauz said. “Ausome had been a huge source of joy and community for our children.”

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