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Nursing shortage means some medically fragile children won't be going to school, parents told

Some parents of medically fragile children say they are frustrated because a nursing shortage in Ontario means their children will not be able to attend school in person this fall.

Parents say news is heartbreaking and children need to socialize with other children

Jill Anema, a mother who lives in Norfolk County, holds Duncan, who will turn four in November. Duncan suffers from Cri-du-chat syndrome, a rare genetic disorder. Jill has been told that there is no nurse for Duncan and that means he cannot attend school in September. (Nick Anema)

Parents of medically fragile children say they are frustrated because a nursing shortage in Ontario means their children will not be able to attend school in person this fall.

Their children, who suffer from complex medical conditions, need extra support to attend school. They require one-on-one care by a trained person at all times. Nurses are needed to attend school with the children to keep them safe, administer medications and give them food.

The parents say they have been told by nursing agencies and the province's Home and Community Care Support Services, formerly the Local Health Integration Networks, that there are simply not enough publicly funded nurses to go around. 

Speaking with CBC News, the parents said the news is heartbreaking because their children have a right to go to school, they have been isolated due to pandemic and they need to socialize with other children for their development. They said the province is obligated to provide children with extraordinary special needs the care they need to obtain an education.

At least one parent believes the solution is for the Ontario government to allow trained people, not only nurses, to act as caregivers for their children in school. Other parents say they are trying to get family managed home care nurses into the school system. 

"I'm angry. I'm sad. There's so many emotions involved," says Jill Anema, a mother who lives in Norfolk County near Simcoe.

"It's a never-ending fight for your child with needs to make sure they're safe, to make sure they have the support. There's just so much involved in getting these kids into school, to be then told that they might not be going to school. It breaks your heart."

Anema's son Duncan, who will turn four in November, suffers Cri-du-chat syndrome, a rare genetic disorder. Up until last year, he had a tracheostomy tube and he still has a G-tube for feeding. A nurse is required to attend school with him to feed him. Anema found out on August 19 from his care co-ordinator that a nurse has not been secured for him in September, when he could start junior kindergarten.

Remote learning is not an option because of his developmental delays, she said.

"We have the emotions of being told: 'Your baby is not going to school.' That's just very frustrating. And we have no idea if or when a nurse will be brought on. They're not hopeful of it," Anema said.

"I feel like inclusion is number one in our world. If other children can attend school, why is mine not allowed to? Just because he has special needs and he needs a little bit more support, that shouldn't limit him," Anema said.

Ontario has 'dropped the ball,' parent says

Joanne Witt, a mother who lives in Dundas, says her son Hudson Maycock, 4 and a half, was born with a congenital heart defect, was four weeks premature, suffers from a heart and lung condition and is  immunocompromised. He would require a nurse at school due to reliance on oxygen and would need a medical professional to monitor his oxygen. She was also told that a nurse wasn't available.

"It's been known that there's a nursing shortage and issues with nursing even prior to COVID that's gotten worse with COVID. It very much feels like they've dropped the ball and that the people who are paying for that are the families like mine, and my son who can't go to school without a nurse," Witt said.

Doris Grinspun, chief executive officer of the Registered Nurses' Association of Ontario, says many nurses are burned out from the pandemic and leaving the profession. She says the association has been pushing the province for years to provide nurses with incentives to stay.

"The question is: What are we waiting for to take action?"

Cayden Martin, 4, is pictured here in nursery school. His mother, Tonya Martin, says a solution to the nursing shortage is to allow Cayden's caregiver to attend school with him to ensure he can start junior kindergarten on time. (Tonya Martin)

Tonya Martin, a mother who lives in Toronto, says her son Cayden, 4, has a caregiver who has cared for him since January, is fully trained in his care and trusted by the family. The caregiver is not a registered nurse in Ontario but has attended nursing school in the Philippines.

A solution to the nursing shortage is to allow the caregiver to attend school with Cayden to ensure he can start junior kindergarten on time, Martin said.

"It is the best solution for Cayden, the best solution for our family and it takes the fewest resources from our healthcare system," Martin wrote in a letter.

"We understand that traditionally only registered nurses are allowed in these positions. However, from experience we know that there is no inherent benefit in being a registered nurse when it comes to caring for Cayden. We prove this every day as his parents, by being the most expert in his care without having any nursing experience."

Situation 'wildly unacceptable,' parent says

Kaitlyn Michaud, a Niagara Region mother of an 11-year-old girl, Sydney, who was born with a genetic disease that has resulted in significant physical and developmental disabilities, said her daughter requires nursing support during the school day because she relies on a feeding tube for nutrition. The family has been told there is no nurse available for the foreseeable future.

"It is the obligation of the province to provide children with extraordinary special needs the supports they need to access a full education," Michaud said in an email to CBC Toronto.  

"This is wildly unacceptable. Given people living with disabilities have been arguably hardest hit by difficulty throughout the COVID-19 pandemic, this additional blow comes as a massive insult to injury. My daughter, like all children, deserves to access a quality education regardless of her additional needs and the province needs to provide her with the resources to do so."

In an email on Sunday, the Ministry of Health said the province has recently announced $61 million in investments to support the recruitment and retention of nurses through measures aimed at expanding enrolment in nursing education programs and supporting nurses in their transition from training to practice.  

"Our government is incredibly grateful for the contributions of Ontario's health care workers, including nurses, and the critical role they have played throughout the COVID-19 pandemic, providing patients with timely, safe and equitable access to high quality care," Alex Hilkene, spokesperson for Health Minister Christine Elliott, said in the email.

"We will continue to work with the sector to support the recruitment and retention of nurses in Ontario."

With files from Farrah Merali

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