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Family of boy with rare neurological disorder pleading with Ontario government to release funding

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WATCH ABOVE: The parents of a child with a rare neurological disorder are pleading with the Ontario government to release funding set aside months ago for families of children with developmental and physical disabilities. As Caryn Lieberman reports, now more than ever amid the COVID-19 pandemic, they’re desperate for help for their son – Jul 29, 2020

The family of a five-year-old boy with a complex neurological disorder is urging the Ontario government to release funding promised under the Special Services at Home (SSAH) program back in March.

“Most of the families we talk to, it’s not even $75 a month for them,” said Aliza Chagpar, Qadim Chagpar’s mother.

“To families, especially right now during COVID, it will allow them access to pay for things where they can be included with their peers.”

For months, the Toronto woman has been her son’s sole caregiver and teacher.

Read more: Kingston single mother says she’s waited months for provincial funding for her son with autism

Qadim has Angelman Syndrome, a disorder that primarily affects the nervous system causing delayed development, intellectual disability, and problems with movement and balance. He is non-verbal and as Chagpar explained, “uses his iPad to talk.”

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“Our children don’t have that social aspect. They’re by themselves all day with just their parents or their family members and it’s very hard for them,” she explained.

It has also meant she is unable to work, so her husband is the sole financial provider for the family.

Before the pandemic, Aliza said Qadim had access to treatment through his public school.

“During the pandemic unfortunately with the schools being shut Qadim doesn’t receive any services,” she said.

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The family applied two years ago for funding through the Special Services at Home program. It is described on the Ministry of Children, Community and Social Services website as a program that “helps families who are caring for a child with a developmental and/or physical disability.”

In response to the COVID-19 outbreak, the website noted temporary changes have been made to the Special Services at Home program.

“We are temporarily expanding the list of eligible expenses under the Special Services at Home program to support people and their families while community-based activities and settings are closed,” the website said.

“These changes allow families to use funding for goods and services that may make it easier to stay at home during this time and practice physical distancing.”

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Aliza said she has yet to receive the funding. In May, she said she wrote to her MPP, Kinga Surma, and Minister Todd Smith and copied Premier Doug Ford, asking that the funding for her family be released.

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“Qadim has been on the SSAH waitlist for over 2 years and we desperately need to access these resources and funding to help keep him safe. Our needs have become even more dire with COVID-19. My son is going through a lot of stress, anxiety and has behavioural outbursts from being cooped up at home all day,” she wrote in her letter.

“He needs access to technology and sensory items to help support his learning at home. We desperately need access to this funding to urgently get Qadim the support he needs at home.”

Paula Boutis, president of Integration Action for Inclusion, called the matter “extremely important” during this time.

“The funding is not much it’s an average of about $2,500 per family … it isn’t a lot of money but it is not inconsequential,” she noted.

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“For parents who have been pretty much 24-7 caregivers trying to be everything to their kids for the last several months, just a little bit of extra money for even things as mundane as someone to come in and clean your house can really make a difference.”

A spokesperson for Minister Todd Smith sent Global News a statement saying ministry staff are contacting new families approved for funding.

“Hundreds of families have already been sent their approval letter and the remaining families will be contacted in the coming weeks,” the spokesperson said.

Meanwhile, Aliza said she has been waiting for years and is feeling more desperate now than ever before.

“It’s required my partner and I become his therapists, as well as his parents, so we have to provide him support to help him with his fine motor, his gross motor skills, his speech,” she said.