opinion: where does childhood disability healthcare go from here?
it’s time to deepen collaborations and make strategic investments so that every child can thrive
3 minute read
julia hanigsberg is the president and ceo at holland bloorview kids rehabilitation hospital. after nearly a decade at the hospital, hanigsberg is preparing to retire at the end of 2025.
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as i close out more than a decade leading canada’s largest children’s rehabilitation hospital, i can’t stop thinking of something one parent told me: “the acute care hospital saved my child’s life, but holland bloorview gave their life back to them.”
as the population climbs, more children and youth with disabilities and developmental differences will have complex needs for which focused rehabilitation brings the possibility of achieving their fullest potential. i’ve seen children’s hospitals and child health research transform the lives of the most vulnerable. children who even a decade ago didn’t live past their 18th birthdays can now expect to live well into adulthood.
yet their rehabilitation–a specialty long overshadowed by acute care–is in a precarious position. for 850,000 children and youth with a disability, there are just 159 developmental pediatricians in canada–one-quarter of whom will retire within five years. they, along with teams of specialized nurses and therapists, address long-term complex physical, mental and behavioural needs and where care takes place over years, trialling new solutions as children grow and develop.
the ability to deliver such personalized, nuanced care is at risk, as canada faces a critical shortage of trained professionals in disability care.
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health care for kids with disabilities and developmental differences faces enormous inequities, and as a society, we must start by shoring up our healthcare system to close these gaps. it’s sobering to learn that a recent survey found that one-quarter of kids with disabilities in canada were treated by professionals unfamiliar with their condition. would canadians put up with this for cancer care?
the truth is that our healthcare system is beyond capacity (especially outside urban centres), causing children to miss crucial development milestones and putting them at a further disadvantage as they enter adulthood. we know the answer can’t merely be to call for more funding–we need smarter funding, high roi investments and an approach that embraces collaboration, not fuels competition.
what can we do?
just as kids and families work tirelessly to achieve their goals each and every day, it takes incredible dedication to transform a disability healthcare system. here’s where we can start:
- fund research to study children’s health, healthcare services and capacity needs. it’s essential for decision-makers to predict future outcomes based on hard data.
- grow pipelines of physicians, nursing and therapy professionals in pediatric rehabilitation. while each pipeline will look different, they must complement each other, and collaboration among players in canada’s higher education sector (colleges, polytechnics and universities) is critical.
- downgrade the “whack-a-mole” funding of any crisis-du-jour and divert more strategic investments to children and youth, which can yield a dramatic roi over the long term. to coordinate these critical decisions, all child health services, including pediatric rehabilitation wherever it’s provided, should fall under one government ministry.
- improve the transition of vulnerable youth to the adult medical system. while children’s hospitals wrap their arms around children and families, that close network of support dissipates when they turn 18. last year, a holland bloorview report found that three in four young adults with disabilities experienced barriers to medical care.
- break down walls to collectively boost access to care. imagine, for instance, a pediatric rehabilitation team deployed to an acute care hospital where a child with cancer also has a disability. or imagine the best innovations seamlessly shared (including via virtual care and “hospital at home”) with any organization, so all children with developmental needs can have the same access to care regardless of where their families live.
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now is the time to be bold and daring, fuelled by collaboration. fortunately, we have tremendously talented people in healthcare who, if given the reins to work in unison, can solve many of the most pressing problems.
focused investments to build capacity inherently make fiscal sense: a new deloitte report shows that every $1 invested in pediatric care yields a social return of up to $5, as it supports caregivers’ ability to keep working and their children’s health complications from spiralling.
ultimately, children with disabilities and developmental differences are so much more than their diagnoses. our job as a healthcare system is to meet their most pressing needs and not put them in a box whose label is convenient for our processes. the future must be one of agile, aligned and thoughtful care on which every child, of any ability, can rely.
julia hanigsberg is the president and ceo at holland bloorview kids rehabilitation hospital. after nearly a decade at the hospital, hanigsberg is preparing to retire at the end of 2025.
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