LONDON — Like every kid, 12-year-old Landon Snider’s day-to-day living involves the support of family, friends, school, and community. Snider, though, is medically fragile, so his list of supports is longer than most and includes personal support workers, respite services, doctors, and therapists. He has developmental delay, chronic lung disease, and a seizure disorder. He can't speak or walk on his own.
Yet, ever since the pandemic began, Snider’s list of supports has been shrinking. The same is happening in the homes of more than 100 medically fragile kids in London and Middlesex County — and others scattered throughout southwestern Ontario. That leaves families wondering how they’re going to cope. “To feel so isolated and alone and not have the proper supports, it’s absolutely crazy,” says Leanne MacDonald, Landon’s mother.
Medically fragile children have one or more chronic and significant health conditions that require daily care, the regular support of trained workers, and devices such as feeding tubes and ventilators. According to the Ontario Ministry of Children, Community and Social Services, it provided specialized respite funding to 2,800 families with medically fragile and technologically dependent children in its 2019-2020 fiscal year.
When the province introduced a shutdown in March, though, many respite services were forced to close. “We’re deemed non-essential,” says Sherry Groulx, executive director of the non-profit Kids Country Club, whose London location provides respite care for about 50 families throughout western Ontario.
The agency specializes in supporting medically fragile children and is the only one in the region that offers nursing services. Through it, parents can get a break and provide their children with a change of scene. Julie and Matthew Schustyk, of Woodstock, say that, pre-pandemic, their son, Joseph — who is non-verbal and has cerebral palsy affecting all four limbs — went to respite services, including those offered by Kids Country Club, at least one week a month. The Ministry of Children, Community and Social Services funds many of these services and also provides funding directly to parents to pay for supports. The Schustyks also paid for private, in-home respite care. When the pandemic began, though, “All of these programs came to a halt,” Julie says.
In normal times, the agency can accommodate four children a night for up to six nights in London. By November, it was one of only two local centres accepting children with complex medical needs for overnight care: only one child was allowed per night, and each family was limited to one overnight (the limit has since been raised to three).
Groulx recognizes that the situation is far from ideal, especially for clients who live outside the city. Implementing the precautions needed to keep people safe — the house is deep-cleaned after clients leave, for instance — adds practical, logistical, and financial hurdles. “We’re getting there,” she says. The facility has not received extra funding related to the pandemic, although the ministry does maintain an emergency fund for agencies. She says it hasn’t applied, because reduced services have created some savings, so it’s been able to manage with the current allocation.
If respite were deemed essential, Groulx says, children would have better access to funding and resources: “We do keep people out of the hospital. We keep families together — although it's hard to really prove those outcomes, which is the problem. We all know it's true; it's just a very hard thing to have a tangible measure on.”
A spokesperson for the Ministry of Children, Community and Social Services told TVO.org via email that “the province has allowed many health and social services to resume, including in-person services like out-of-home respite care provided they can operate in compliance with the advice, recommendations and instructions of public health officials.”
Many families say that the reduction of at-home services is compounding the situation. When the pandemic hit, the Schustyks stopped overnight nursing because they were worried about workers’ potential exposure to the virus. Going from having support and breaks to having to do 24-hour care “was a big adjustment for us,” Julie says.
When they later revived the assistance, they discovered they couldn’t fill the 26 nightly shifts a month that home and community care had allocated to them, due to a shortage of workers. Currently, they receive 20 nights a month.
The reopening of schools in the fall brought relief for some families. “It was a hard decision, but for everyone's mental health, it was good for the kids to go back for various reasons,” says Julie. The low number of cases in Woodstock was a deciding factor. “If the number starts skyrocketing, I would pull [my kids],” she says.
For Zachary Taylor, of Hanover, returning to school simply wasn’t an option. Zachary, 9, has Snyder-Robinson’s syndrome, which causes intellectual impairment, impedes development, and has led to other conditions such as osteoporosis, seizures, and the inability to swallow food. “He’s frail when it comes to anything that could impede breathing like COVID does,” says his father, Phil.
Phil enrolled his son in the local school’s remote-learning program — partly to keep Zachary connected with his classmates, but also to ensure that he continues to have access to the therapeutic services he would normally obtain while at school. A change in service providers, though, meant they were slow to arrive: Zachary didn’t see the school board’s physiotherapist until mid-November.
Landon is also enrolled in online learning. So far, no physiotherapist has visited, Leanne says. She contemplates the standing frame in her living room, which Landon normally uses at school. “I don't even know how to put him in, and it's equipment that Landon could really benefit from,” she says. “I’ve got nobody to show me how to use it.”
But finances are her biggest worry. She’s getting enough through provincial grants, assistance from a community organization, and social assistance to cover the extra help until the end of the calendar year. New government funding for his care won’t arrive until April. She applied for help from an emergency fund maintained by the Ministry of Children and Social Services, but her application was turned down; she doesn’t know why. (The ministry told TVO.org that it could not comment on individual cases.)
Lisa Gretzky, the NDP's community and social services critic, says it's "shameful" that the province hasn't declared such services essential. "Whether that's financial, emotional, developmental, or mental health support, these families are doing it all, and the government needs to recognize that and deem them essential and ensure that they have the support like respite," she says. "It needs to be legislated — and funded."
“Sometimes I’m so exhausted, just so tired,” MacDonald says, adding that “everybody feels terrible” about the situation, including her social worker. “She’s at a loss for words. She doesn’t know what to do.”
This is one in a series of stories about issues affecting southwestern Ontario. It's brought to you with the assistance of faculty and students from Western University’s Faculty of Information and Media Studies.
Ontario Hubs are made possible by the Barry and Laurie Green Family Charitable Trust & Goldie Feldman.