Dream of new Ontario health team for kids? More time to be a mom to son with complex health issues

Stephanie and Matthew Paravan share some time together at their home in Ottawa Ontario Monday June 5, 2017. Matthew suffers from debilitating seizures, sometimes hundreds a day, and is a complex needs patients. His mother, Stephanie, will speak to us about how she manages that care, and how she's looking forward to a new CHEO plan, being unveiled Tuesday, to ease that burden. Tony Caldwell / Postmedia

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Stephanie Paravan has a way of cutting through the complexity and bafflegab about what health care changes underway in Ontario could mean.

For the mother of Matthew, a 12-year-old with complex and multiple serious health issues, the creation of a new kid-centric health care team in Ottawa holds this promise: More quality time with her son.

“Having an Ontario health team like this in place will give me more time to actually be a mom to Matthew instead of being his caregiver or his care coordinator. It is difficult, you just don’t get those moments to be a mom and spend time doing things anyone else would be doing with their 12-year-old.”

Paravan is among parents who are helping to design the as-yet-to-be-named Ontario Health Team in Ottawa dedicated to children and youth. The team includes 59 organizations and agencies, including CHEO, the regional children’s hospital as well as organizations that focus on children and youth mental health, home and community care and more. A contest is now underway asking children and youth to come up with a name.

For Paravan, the new system holds the promise of solving problems for families of children with complex care needs and filling gaps that are too often filled by family.

Matthew, a Grade 8 student at Centennial Public School in Ottawa, was, in his mom’s words, perfectly healthy until he was six. And then things changed dramatically.

“He is a little tricky to describe,” she says.

Stephanie and Matthew Paravan share some time together at their home in 2017. Tony Caldwell / Postmedia

Matthew has an autoimmune condition and an undiagnosed neurological condition, the results of which are frequent seizures, the loss of his mobility and speech and constant pain. He depends on a wheelchair to get around and communicates using cards, apps and other devices. He is not able to sit up or eat on his own. He receives palliative care. Cognitively, though, “He is a typical 12-year-old boy.”

In 2013, when Matthew became sick, Paravan quit her job as a teaching assistant to be his full-time caregiver.

That means she spends hours navigating the fractured and disconnected system of the supports he needs to get through a day.

“The system in pediatrics is somewhat fragmented. There are a lot of different agencies involved. One of our biggest challenges is navigating that system.”

The children’s health team is one of 31 teams in the running to be the first in the province to operate under a new system announced by the Progressive Conservative government earlier this year. The deadline to complete the application to be named a team is Oct. 9. The kid-centric team is the only one in the province’s innovative category, said CHEO CEO Alex Munter.

Eventually, the province says every part of the province will be served by one or more health teams.

Munter said one of the priorities in the team’s first year is to fill gaps in the needs of children in the region with mental illness and complex healthcare needs.

“We have 18 mental health and addictions organizations around the table planning together and talking about how we can make services interoperable,” he said. Families are helping to guide the decisions.

ALSO: ‘Game changer’: Community health centres lead in building Ottawa health team

Planning for an integrated health team comes as there is a steeply rising mental health crisis among children and youth in Ottawa and elsewhere.

Twenty five per cent of children who show up in mental health crisis at CHEO emergency will be back in six months, he said.

“That problem will not be solved in the psychiatric unit of the hospital or the emergency department.”

The aim of the health team, Munter said, is to think of those children not as patients of the hospital, but as clients of 17 agencies working together. “Our goal would be that kids don’t need to keep coming back to the emergency department for mental healthcare, that we intervene and prevent it earlier.”

Similar work is being done about care and support for children with complex health needs, like Matthew Paravan. Often children with complex needs can’t be discharged from hospital because there is no suitable care available for them at home or at school.

The health team focused on children has made the point to the province that children are not just smaller adults and need services to meet their specific needs. Home care is a key example. While it represents a much smaller need than home care for the elderly, the issues are different. Rather than a shortage of personal support workers, which is a challenge for senior care, care for children relies on enough specialized nurses and therapy available for home and school care.

CHEO has the advantage of having planned for better integrated treatment for years.

Munter says the new health team builds on that and has the “potential to make care better and make it more connected.”

Elyse Schipper, executive director of Parents’ Lifelines of Eastern Ontario, a group formed to support parents of children and youth with mental health challenges, said she believes the health team will leverage some of the work they have done helping families navigate the system.

Paravan, meanwhile, is looking forward to having to do less work to keep her son’s complex care needs met, and being able to spend more time just being his mother.


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