Parents still fighting to get their medically fragile children nursing care in Ontario schools
Every day since the beginning of the school year, Tonya Martin has attended a Toronto junior kindergarten class.
It's the only way Cayden, her medically fragile four-year-old, can get 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 fortunate.
"I know a lot of families have not been afforded the same flexibility."
Students like Cayden require one-on-one care by a trained person at all times. Nurses are needed to attend school with medically fragile children to keep them safe, administer medications and help them eat. But a province-wide nursing shortage means families have been left scrambling to recruit their own help, spending hours navigating the rules and in some cases not having their kids attend school at all.
The Ministry of Health says it has recently announced $61 million in investments to support the recruitment and retention of nurses, including adding 800 nursing positions in areas of need across the province and new spaces to nursing programs starting in the fall of 2021.
But with school underway, parents and groups like the Ontario Disability Coalition worry those efforts won't move fast enough to ensure kids with disabilities get an education this year.
Martin says she's still trying to find full-time care for her son. The family has had a caregiver since January who is fully trained in his care and trusted by the family, but she is not a registered nurse in Ontario so she's not allowed to fill the role at school. Martin says solutions like this are often readily available and the rules need to be more flexible.
"I am working very hard to convince all parties that she would be a wonderful, safe caregiver for him that is available," she said.
"The Ministry of Health needs to provide leadership, recognize we have a crisis of care."
Martin adds that the nursing shortage also affects her family at home, where a couple of nights a week she and her husband have to stay up all night to monitor their son.
Shanna Gonsalves is experiencing sleepless nights as well.
Her seven-year-old son Ashton requires a full-time nurse and airway monitoring at home and at school in Baltimore, Ont. about 120 kilometres east of Toronto. She says it was a struggle to find nurses for her son before the pandemic. But when it affected his schooling, she had to take action.
"All of our kids who are medically fragile deserve a right to an education. It is not their fault that they need a nurse to be there." she said.
Gonsalves says she felt she was left with no choice but to secure a lawyer and move toward a human rights complaint.
She says the school board ended up agreeing to allow her to bring in a nurse she hired through Home and Community Care Support Services, but she's still dealing with red tape.
"The school board is asking for insurance that doesn't seem to exist for an individual nurse. It exists for agencies, hospitals, and companies but not individual people so that's one hurdle I'm having to jump."
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 practise getting up early.
"Reminds me of why I am doing this. It's for him."
Gonsalves says she's already put in hours trying to find a solution that could pave the way for other parents and students in this situation.
"The worst part is, is for me to get him to school, I had to get a lawyer ... How many parents have to fight this hard?" she said.
Children with disabilities missing school across province
Sherry Caldwell, co founder of the Ontario Disability Coalition, says her group is hearing stories like this across the province.
"The vast majority of students are still at home, wanting to go to school."
She says the pressure on families is mounting and worries about the threat to the safety of children with disabilities who aren't getting the support they need.
Her group wrote an open letter to the Ontario Ministry of Health and the Ministry of Education. She was told the letter was received but hasn't heard a response.
"We really want the health minister and the education minister to sit down just with a few of these moms so they could really understand what these families are going through on the ground," she said.
"They need to look at expanding to other agencies and allowing very individualized solutions too."
'How much longer is this going to go on?'
Caldwell also wants the province to collect data on how many kids aren't receiving the home and school care they need, to help illustrate how widespread the problem is.
When CBC News asked the Ontario Health Ministry how many children aren't receiving the home and school care they need, it referred us to Home and Community Care Support Services, the government agency that arranges nursing care for kids with disabilities in home and in school.
The numbers were not provided. But in a statement, the agency's director of transition communications and engagement, Dave Richie, said it works with its service providers and local school boards to bring in-school nursing to eligible children, and it's continuing to work closely with them to secure those services.
"The COVID-19 pandemic has created staffing challenges for delivering health care in all sectors across the province. We encourage any patients who have concerns about their services to contact their Care Coordinator directly," the statement reads.
But Caldwell worries about the time that's passing while many of these children aren't in school.
"How much longer is this going to go on? It's late September now and I don't see a resolution to this in sight," Caldwell said.
Meantime, for Martin, seeing her son in a new environment, painting and using his walker in gym class fuels her to keep pushing for solutions, even if it means temporarily putting off getting back into the workforce.
"I will keep going to kindergarten as long as I have to."
