Every day since the start of the school year, Tonya Martin has attended a kindergarten class in Toronto.
It’s the only way Cayden, her medically fragile four-year-old, to get an education and participate in the classroom as the province faces a shortage of nurses.
Martin says it’s not ideal, but she still considers herself lucky.
“I know a lot of families haven’t had the same flexibility.”
Students like Cayden require one-on-one care from a qualified person at all times. Nurses are needed to attend school with medically fragile children for their safety, administer medication and help them eat. But a province-wide nursing shortage has meant families have had to scramble to recruit their own help, spend hours navigating the rules and, in some cases, not having their children in school at all.
The Department of Health announced that it recently announced investments of $ 61 million to support the recruitment and retention of nurses, including the addition of 800 nursing positions in areas requiring care across the province. and new places in nursing programs starting in fall 2021.
But with school underway, parents and groups like the Ontario Disability Coalition fear these efforts will not move fast enough to ensure children with disabilities receive an education this year.
Martin says she is still trying to find full-time care for her son. The family has had a caregiver since January who is fully trained in her care and trusted by the family, but she is not a registered nurse in Ontario, so she is not permitted to fill the role at the school. Martin says solutions like this are often readily available and the rules need to be more flexible.
âI am working very hard to convince all parties that she would be a wonderful, safe and available caregiver for him,â she said.
“The Department of Health needs to show leadership, recognize that we have a care crisis.”
Martin adds that the nursing shortage is also affecting her family at home, where two nights a week she and her husband have to stay up all night to watch their son.
Shanna Gonsalves also experiences sleepless nights.
Her seven-year-old son, Ashton, needs a full-time nurse and respiratory monitoring at home and at school in Baltimore, Ont. approximately 120 kilometers east of Toronto. She says it was a struggle to find nurses for her son before the pandemic. But when it affected her schooling, she had to take action.
“All of our medically fragile children deserve the right to an education. It’s not their fault that they need a nurse to be there.” she said.
Gonsalves says she felt she had no choice but to find a lawyer and file a human rights complaint.
She says the school board eventually agreed to allow her to bring in a nurse she hired through Home and Community Support Services, but she still faces red tape.
âThe school board is asking for insurance that does not seem to exist for a particular nurse. It exists for agencies, hospitals and businesses, but not for individuals, so it’s a hurdle that I have to overcome.
Gonsalves says she knows this fight is worth it for her son, who comes home from school smiling and singing. Two days before the first day of school, she says Ashton set an alarm to practice getting up early.
“It reminds me why I’m doing this. It’s for him.”
Gonsalves says she’s already spent hours trying to find a solution that might pave the way for other parents and students in this situation.
“The worst part is that in order for me to take him to school, I had to hire a lawyer … How many parents have to fight this hard?” she said.
Children with disabilities miss school across the province
Sherry Caldwell, co-founder of the Ontario Disability Coalition, says her group hears stories like this from across the province.
“The vast majority of the students are still at home, wanting to go to school.”
She says the pressure on families is increasing and worries about the threat to the safety of children with disabilities who do not receive the support they need.
His group wrote an open letter to the Ontario Ministry of Health and the Ministry of Education. He was told the letter had been received but had no response.
“We really want the Minister of Health and the Minister of Education to sit down with a few of these moms so that they can really understand what these families are going through on the ground,” she said. .
“They need to consider expanding to other agencies and also allowing very individualized solutions.”
“How long is this going to last?” “
Caldwell also wants the province to collect data on the number of children who are not getting the home and school care they need, to help illustrate the scale of the problem.
When CBC News asked the Ontario Ministry of Health how many children are not getting the home and school care they need, it referred us to Home and Community Support Services, the government agency that organizes nursing care for children with disabilities at home and at school. .
Figures were not provided. But in a statement, the agency’s director of transition communications and engagement, Dave Richie, said he was working with his service providers and local school boards to bring in-school nursing care to people. eligible children, and continued to work closely with them to obtain these services. .
âThe COVID-19 pandemic has created staffing challenges for the delivery of health care in all areas of the province. We encourage all patients who have concerns about their services to contact their care coordinator directly, âthe statement read.
But Caldwell worries about the time that passes when many of these kids are out of school.
“How long is this going to last? Now is the end of September and I don’t see a resolution on this in sight,” Caldwell said.
Meanwhile, for Martin, seeing her son in a new environment, painting and using his walker in gym class pushes her to keep looking for solutions, even if it means temporarily delaying his return to the workforce.
“I will continue to go to kindergarten for as long as it takes.”