Kids Come First

Katherine Stevens, a Grade 11 student at Colonel By High School in Ottawa, has become engaged in improving health care for young people. “I would like to see better communications between everyone involved in my care,” she says.

After surgeries in 2016 and 2017 to treat hip dysplasia, along with frequent visits to the CHEO’s gastrointestinal clinic for other health issues, she was tired of retelling her story every time she needed care. She saw that better integration of care would improve her experience.

Katherine joined the CHEO Youth Forum — volunteers who partner with CHEO to ensure youth experience is integrated into everything that CHEO does.

The Kids Come First Health Team’s has a digital health plan:

All of our partners that are planning a digital health investment in the next 18 months, will be supported in evaluating existing regional investments in order to identify which existing instances would be the best fit for their needs.

Kids Come First will help young people like Katherine by ensuring that health records are seamlessly shared among all of her health-care providers.

Stephanie Paravan wants more time to just be a mom to Matthew, her 12-year-old son with complex and serious health issues.

“I spend too much time navigating Matthew through the health-care system,” says Stephanie. “There are lots of programs but too many points of access. Some days I feel like I’m an administrator, not a mom.”

Matthew is a Grade 8 student in Ottawa. Cognitively, he is a typical 12-year-old boy, but he has an autoimmune condition and an undiagnosed neurological condition which result in frequent seizures, loss of mobility and speech, and constant pain. He depends on a wheelchair and communicates using cards, apps and other devices. He is not able to sit up or eat on his own. He receives palliative care.

Matthew frequently needs inpatient care at CHEO and Roger Neilson House. When it’s time to go home, Stephanie gets printed copies of his care plan so she has them in hand to share with Matthew’s home-care providers. Often, she and Matthew are home with the rest of the family before their home-care providers even knows that he has been discharged.

The Kids Come First Health Team’s first-year goals include:

Establish a fully-integrated pediatric home-care program, focused on the needs of patients and families, and connecting care and providers across acute, post-acute, home and community settings.

Kids Come First will help moms and sons like Stephanie and Matthew by integrating home care with hospice and hospital care so that families can focus on each other, not arranging for caregivers.

“Some days I feel like I am his case coordinator, instead of his mom,” says Christie Kopczyk of her 14-year-old son Troy.

“As a parent, you have to learn about all of the care you can get for your son to give him his best opportunity to thrive.”

Before birth, Troy was diagnosed with hydrocephalus. By the time he started Grade 1 Troy had seven brain surgeries and hours of speech language therapy, physiotherapy, and occupational therapy. More recently, he has had some mental health challenges with ADHD impacting his academics and social skills.

“Once Troy started school, there were gaps in his care,” Christie says. “The school system tries but you wind up with a visit from therapists once every six weeks for 25 minutes that gives some suggestions on exercises and how to help him in the classroom. “

With the support of his mom, along with dad Greg and brothers Tristan, 11, and Jake, 6, Troy is succeeding in Grade 9.

The Kids Come First Health Team’s first-year goals include:

Establish a fully-integrated pediatric home-care program, focused on the needs of patients and families, and connecting care and providers across acute, post-acute, home and community settings.

Kids Come First will help families like the Kopczyks by integrating health care in the community, including school systems.

Michelle March, 19, and her mom Amélie moved to Ottawa hoping for better access to health care. Michelle is an articulate, self-aware young woman who understands that her health needs are complex. She needs support dealing with depression, anxiety, PTSD, insomnia and dissociative personality disorder. Mom, Amélie, is loving and supporting.

Michelle’s first family doctor in Ottawa was not well versed in the supports available for a young woman dealing with issues like Michelle.

“It was a frustrating experience,” says Michelle. “I needed help but my first doctor did not seem to believe that a young person like me could have such severe mental health issues. She did not know what to do. She did not know what was available or where to send me.”

The Kids Come First Health Team’s first-year goals include:

Implement a regional “One phone number/One click” resource for those looking for service information including children, youth and families/caregivers, as well as service providers.

Kids Come First will help young women like Michelle by equipping primary-care providers with better access — they will know who to call, for what, and when, to support their children and youth.