Inadequate home care for Ottawa-area families with sick children, study finds

Taking care of a sick child not only takes up a family's time, but it would also cost the healthcare system more than half a billion dollars in the Ottawa area alone, if the government had to paypersonal support workers to do the job parents are currently doing.

Families spend 15.7-million hours per year caring for their children with both acute, chronic and complex health issues, a first-of-its-kind study in Ontario by the Champlain Local Health Integration Network has found.

"[It's] a story, fundamentally, about a parent's love for their child and so when we put a dollar figure on what that's worth, obviously, it's priceless,"Alex Munter, chief executive officer of the Children's Hospital of Eastern Ontario and the Ottawa Children's Treatment Centre told CBC Radio's Ottawa Morning.

$530-million price tag if PSWstook over for parents

But the study did put a price on those hours and found if personal support workers were hired to do the job, including managing medications,medical equipment and assistive devices orcoordinating care, the price tag would be $530-million, or about twice the annual budget ofCHEO and the OCTCcombined, he said.

That number is based on a $34 hourly rate paid to PSWs by the Community Care Access Centre.

"It tells us that we rely heavily on family caregivers to support kids that have very complex needs" along with other conditions, including kids recovering from injuries and mental health issues.

The report outlines the hours families spend caring for a child depending on their medical condition, based on a U.S. survey, ranging from 130 hours a year for children with attention deficit disorder, all the way up to 629 hours for kids with cystic fibrosis.

Parents spend an average of 300 hours annually caring for sick children

But even the average annual number of hours each family spends caring for children 300 seems low to Andrea Gumpert, the mother of a 6-year-old boy with a genetic mutation who requires complex care and she feels it misses a whole segment of children who havemultiple conditions.

We will feed our children, we'll take care of them, we'll do everything for them before we take care of ourselves.-Andrea Gumpert, mother of a 6-year-old boy with multiple health issues

Her son, Emmanuel,has the mental capacity of an eight-month-old and can't speak or walk.

"[He} is reliant on us for absolutely everything. Wehave to feed him. We have to dress him. He'sin diapers, so the toileting is all ours [along with] anytime he needs to be transferred from bed to chair to bath," she told CBC Radio's Ottawa Morning.

Despite all the careGumpertandher husband are expected toprovide, neither of them could quit their jobs to becomefull-time caregivers. Emmanuel currently receives special care outside the home when his parents are working.

"I don't know what's coming down the road for him. At least when I'm here, I know what kind of care he's going to have. So, I have to prepare for anything that could happen with Emmanuel. And I want him to have the very best care," she said.

Burn out a real concern

Without help, burn out is a real concern for caregivers andshe wants families to be able to give input to find creative solutions to avoid that problem, she said.

We need a pediatric home care strategy that supports kids and families with complex needs.- Alex Munter, chief executive officer of the Children's Hospital of Eastern Ontario and the Ottawa Children's Treatment Centre

"We will feed our children, we'll take care of them, we'll do everything for them before we take care of ourselves," she said.

The number of children and youth in the Ottawa area is set to grow by 30 per cent in the next two decades. Despite this, the region currently receives20-per-cent fewerhome care services compared to the provincial average, according to the report.

That inequity needs to be fixed, said Munter.

A lot of focus has gone into home care for the elderly, because they account forthe majority of home-care users.

"We need a pediatric home care strategy that supports kids and families with complex needs, with episodic needs and we need to think abouthome care differently for this population," he said. "We can do better and we should do better to support them."