Knowledge Hub

This visually dynamic PowerPoint presentation encourages the reader to reconsider our traditional way of thinking about the concept of ‘disability’ and promotes a life course approach when dealing with children/youth with developmental conditions. The lived experiences of adults with cerebral palsy or other developmental conditions must be incorporated into our policy making decisions to promote positive changes within the healthcare system, including the acceptance of diversity and variation.

Feeding back to feed forward. Lessons from adults’ experiences should impact children and families

Knowledge Hub

This visually dynamic PowerPoint presentation encourages the reader to reconsider our traditional way of thinking about the concept of ‘disability’ and promotes a life course approach when dealing with children/youth with developmental conditions. The lived experiences of adults with cerebral palsy or other developmental conditions must be incorporated into our policy making decisions to promote positive changes within the healthcare system, including the acceptance of diversity and variation.

Synopsis of resource

This material focuses on the past experiences of care for childhood developmental disabilities and ways of improvement for the future:

  • WHAT has been our ‘culture of disability’?
  • WHO are ‘we’, and why does that matter?
  • WHERE are we/where should we be going?
  • HOW can we change/expand our service systems?
  • WHY is change essential? and
  • HOW WILL WE KNOW if we succeed?

The practice with professionals trained/experienced to work with children (+/- youth) stops at age 18 and the professional usually lack experience of ‘adult’ needs/services. The author proposes that it’s essential to widen the scope of our thinking in line with WHO’s  (ICF) framework for health and the F-words. It is also essential to take a life-course approach to these life-long ‘child-onset’ conditions. We need to promote: development, child/family strengths, achievement, being family-centered, life course thinking, and multiplicity of factors & forces that could influence everyone’s life.

Key learning outcome

  • Families should be our focus of work
  • Promote life course approach
  • Identifying Societal determinants and expand our way of thinking to involve the whole community, policy makers and services of all sort to take a life course approach
Peter Rosenbaum

Authors

Peter Rosenbaum, M.D., FRCP (C) Professor of Pediatrics since 1984, and held a Tier 1 Canada Research Chair 2001- 2014. In 1989, Peter co-founded the award-winning CanChild Centre for Childhood Disability Research. He and CanChild have received numerous award for their work from around the world.

Peter has held > 85 research grants and contributed to > 350 peer-reviewed articles and book chapters. He has been an invited lecturer and keynote speaker in >30 countries, has worked with almost 80 graduate students, and has been a graduate supervisor or committee member at several universities.