Abstract
BackgroundAdvances in lifesaving technologies and treatments make it possible for children with profound physical and cognitive impairments to survive into adulthood. Questions regarding how and where they should live are discussed rarely and, when they are, primarily focus on safety and/or containing costs. Since models of long-term care provision are age-based, children who reside in institutions are ‘discharged’ to adult facilities when they reach an arbitrary age. Such transfers may not be in the best interests of these young people or their families. Our aim in this debate is to highlight why age is a problematic criterion for placement decisions, with the goal of stimulating further research and inquiry.DiscussionTransfers from pediatric to adult institutions are driven primarily by funding arrangements and underpinned by stage-based theories of human development. Arguments supporting such transfers point to the value of communal living with same age peers, and engagement in age-appropriate activities. These goals are questionable for individuals who are minimally interactive and/or where equally worthy interactions are feasible in intergenerational settings. Instead their accommodation needs might more closely align with palliative care principles of supporting individuals and families to enjoy what they bring to each other’s lives and minimize suffering. Innovative models of ‘vertical care’ and ‘lifetime homes’, which enable continuous flexible services across the lifespan, are discussed as examples of alternative approaches requiring further debate and research.SummaryEntrenched funding and service models that require the transfer of profoundly impaired young people from pediatric to adult facilities need to be re-examined with considerations of best interests, needs, and preferences of individuals and their families. Questions of what constitutes a ‘good life’ for these individuals are tenacious and require further thought and research. Nevertheless, they need to be regarded as citizens of our human community deserving of a good life in whatever form that may take, in settings that enable them to flourish.
Highlights
Advances in lifesaving technologies and treatments make it possible for children with profound physical and cognitive impairments to survive into adulthood
Summary: Entrenched funding and service models that require the transfer of profoundly impaired young people from pediatric to adult facilities need to be re-examined with considerations of best interests, needs, and preferences of individuals and their families
Age as a problematic criterion In the last decade, the rhetoric of ‘transition’ has been used to frame discussions pertaining to transferring young people from pediatric to adult services and settings
Summary
Age as a problematic criterion In the last decade, the rhetoric of ‘transition’ has been used to frame discussions pertaining to transferring young people from pediatric to adult services and settings. ‘transitions’ models oriented to preparing children for the ‘ stage’ in life may be less appropriate for profoundly impaired young people who are not expected to change roles or activities in any traditional way Instead, their accommodation needs might more closely align with palliative care goals to support individuals and families to ‘live well in the present,’ to enjoy what they bring to each other’s lives, support meaningful interactions and minimize suffering and family burdens [57]. SK is a Clinical Study Investigator at the Bloorview Research Institute and Lead of Evidence to Care at the Teaching & Learning Institute at the Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada Building on her background in Developmental Psychology, her research interests focus on enhancing the participation and inclusion of youth with physical disabilities and/or medical complexity, including their transition to adulthood, impact of alternative and complementary therapies and service models supporting continuity of care. Her research addresses the physical, social and policy barriers to inclusion that disabled children and their families encounter
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