Turning 18 is a rite of passage, the official signal of adulthood and the right to vote.
But for the families of children with medical complexities or rare diseases, turning 18 is filled with dread.
Children’s hospitals across Canada have become world-leaders in providing innovative care to help children live longer. But after 18 they can no longer continue in the pediatric system.
Parents have described the current process like “falling off a cliff” and see no viable option for housing when their child becomes an adult.
There has never been a system of care developed for young adults with medical complexities because they were never expected to reach adulthood. As a result, they have incredibly stressful transitions into an uncertain mix of adult hospitals, community-care facilities, and their family’s homes. If they have a home.
The physical, emotional, and financial demands of caring for a medically complex child who requires 24/7 care is a tremendous burden for parents to take on alone, causing some to resort to the child-welfare system.
Sadly, many medically complex children are in government care and do not have a home to go to. For these children, turning 18 doesn’t just mean they are no longer eligible for pediatric care, in most cases it also means they are no longer covered by their provincial child welfare system.
One day they are a child of the system in pediatric care, and the next day, they are not. For those who can live at home, their parents are now older, and the burden of care is exhausting, impacting their health and ability to age with dignity.
Many of these families want to care for their medically complex child at home but need support to learn new skills to do it. They occasionally need respite. And for some, their child may have been living in a hospital but is medically stable enough to transition to a community-care setting — if only they can find a space.
We do not have a system in place for these vulnerable individuals. More funding for health care is just one part of the answer. But without better collaboration across government programs, we will continue to fail more kids. As the Canada Disability Benefit Act progresses towards the Senate, and provinces negotiate health-care funding with the federal government, we must ensure three critical needs are met.
First, investments must be made now to increase the available spaces and programs for children, youth, and young adults with complex-care needs. And those investments need to help close the gap for kids when they reach the age of 18.
Second, we must enhance supports for Canadian families who want to keep their child at home with access to good respite programs. As parents can no longer fully care for their child, we must be able to transition them to appropriate residential programs.
Third, medically complex individuals need financial support that ensures they escape poverty.
Complex doesn’t mean impossible.
In 2022, Safehaven partnered with Holland Bloorview Kids Rehabilitation Hospital and the Government of Ontario to develop an innovative transitional care solution to free up critical pediatric hospital capacity. We need more programs like this.
When a child comes into our care, we commit to providing them a home, with all the care and love needed to thrive for however long they need it. Sometimes that means for life. But with no formal system in place, we must fight for every one of them to ensure the government continues to support their care and they can stay with us into adulthood.
No one expected these kids to make it to 18. But they are fighters and miracles. Every child with medical complexity in Canada deserves to know they belong. Our governments need to work together to make sure they do.
Susan Bisaillon is a nurse and the CEO of Safehaven, a non-profit provider of respite and residential care for children, youth and young adults living with complex medical needs.