Health P.E.I. program for kids with complex needs helps bridge a gap in Island health care

Dozens of Prince Edward Island families are taking advantage of a Health P.E.I. program aimed at children with complex needs, helping those under 18 who have a condition that affects their day-to-day lives.

In 2023, Health P.E.I. released results of a survey suggesting that 84 per cent of children with complex needs experienced difficulties accessing health services. This program was designed to bridge that gap.

Shalyn Pinkham, the program’s provincial co-ordinator, said many families used the survey to report issues.

“It determined that… about one in six children have complex needs and that mostly all of those families had difficulty navigating the system,” she said. “So this was created as the first step to better support families with the continuity of care.”

Pinkham said a complex need was defined as “a condition that impacts their day-to-day ability, their condition is expected to last or has lasted a year, and they have an ongoing need for prescribed medication or supplements and ongoing need for medical therapies and/or an ongoing need for medical care.”

P.E.I. program is helping parents of children with complex needs navigate health-care system

The Children with Complex Needs Navigation Program started in the winter. It was created in response to a Health P.E.I. survey done a few years ago that suggested most caregivers needed more support. As CBC’s Sheehan Desjardins reports, one group says the program is already making a difference.

Children covered by the program, launched in December 2024, may be living with conditions like cerebral palsy, asthma or autism.

“We’ve had over 50 referals so far,” said Pinkham. 

“When we were doing the program design, we wanted to ensure that we were capturing what families were telling us, so we’ve created a program with really good data tracking,” she added. “That impacts how our program is effectively running and also how we’ll expand in the future.”

There is already talk of the program expanding, she said. 

“One area of concern is co-ordination of care [and] travel out of province to see some specialty services,” she said.

Bringing lived experience

Pinkham said taking on this project is personal for her.

“My oldest daughter is medically complex. She is 12 years old and I’ve had to advocate for her and co-ordinate her care,” she said.  

“This work is really meaningful to me and I’m really happy to be able to bring a lived-experience lens to the role and I take that with me in every conversation I have, every decision that I have to make in this role.”

Andrea Van Wiechen, the navigator in the program, said it’s turning out to be very important for the families who use it.

“The health system is getting more complex by the day and patients’ health needs are more complicated as well, so having someone to guide them through the medical system is really crucial,” she said.

“It’s also really helpful for families to have an emotional support through their journey… I know first-hand, when my family was needing medical care, that having a caring team was really helpful, and I want to be a part of that for other families.”

Van Wiechen said this program can speed up the time it takes for families to find the services they need.

“I can’t change wait times for services, but I can help families to find the most appropriate services.”

Families who want to find out if they are eligible to access these services can go to the Children With Complex Needs page on the Health P.E.I. website.