Improving care in the long term for youth and young adults with complex care needs

The Challenge

Over half a million Canadian children and youth have a disability that compromises their physical, social and/or emotional health and developmental capacities. A generation ago most children with severe disabilities died before reaching maturity; now, due in large part to advances in diagnostics and medical technology, more than 90% survive to adulthood. Higher survival rates have been linked to longer wait lists, shortages in available appropriate services, and a lack of coordinated care after transfer from pediatric to adult care, and have highlighted training needs in the adult system to manage young adults with complex care needs.

In Canada, many people with complex care needs and their families attest that they are in crisis because there are not enough of the right services and supports to facilitate their care and life journey. Further, services that do exist are often difficult to navigate and community support programs are commonly associated with impenetrable wait lists and extremely high costs. A study conducted by Cohen, Berry, Camacho, Anderson, Wodchis & Guttmann in 2012 demonstrated the two-year expenditure on children with medical complexity (CMC) represented 32.7% of the total healthcare spending on children in Ontario, but represented less than 1% of the child population. Families, patients and experts argue that initiatives to improve the quality and cost of care for this population need to focus on improving transitions within the entire continuum of care.

CFHI's Work

In 2013, The Canadian Foundation for Healthcare Improvement (CFHI), with funding provided from the Ontario ministries of Health and Long Term Care, Children and Youth Services, Community and Social Services and Education prepared a report with an aim to:

1. Develop a better understanding of the profile of youth and young adults with complex care needs; 

2. Illuminate the required interventions for youth and young adults with complex care needs to successfully transition to adult services that will continue to meet their needs.

Information obtained through this work is being used to help Ontario ministries better understand the youth (aged 14-17 years) and young adults (aged 18-29 years) with complex care needs (see below) who will require or are waiting for transition to adult services.

CFHI led the work with a core project team that included a young adult and a parent, a rehabilitation and disability expert, pediatric physician, transition and policy experts, a pediatric nurse practitioner. The project team had a broad level of experience of the community, social and acute services required to support transition to adult services for youth and young adults with complex care needs.

In developing the report, the following activities were undertaken:

  • Review and analysis of academic and unpublished literature 
  • One-on-one caregiver interviews 
  • Emailed surveys that asked a variety of stakeholders “what three top interventions/practices result in successful transition to adult services for youth and young adults with complex care needs who require care in the long term?”
  • Roundtable at Holland Bloorview - Care in the long term for youth and young adults with complex care needs: What key interventions and practices can support family-centered transition to adult services? - on June 4, 2013 with 60 participants. 

* Disclaimer: This work was produced with funding from the Ontario ministries of Education, Health and Long-Term Care, Children and Youth Services, and Community and Social Services. The views expressed are those of the authors. No inferences should be drawn with respect to the views or endorsement of content by the funders

To learn more, please contact:

Jennifer Major
Senior Advisor, Education and Training
613-728-2238, ext 217