Uneasy transition to adult health care system for youth with cerebral palsy
At the age of 18, British Columbia youth with cerebral palsy are "cut adrift to muddle thru an unfriendly adult (health care) system," according to Vancouver Sun intern Katelyn Verstraten.
Verstraten, a NeuroDevNet/Mitacs intern, specialized in reporting on CP during her 2013 placement with the Sun. Her stories on the lived experience of CP, recent research, and promising therapies on the horizon have been widely read and discussed. An article on CP research group co-lead Jerome Yager's work showing neuroprotective effects from consuming broccoli sprouts garnered international interest.
Today's story, "An uncertain transition" is featured on the front page of the Sun's Weekend Review section. Verstraten portrays twoCanadian young adults who have made the difficult move to the adult system, and the complicated context in which their transitions took place.
Transition issues affect youth affected by a gamut of neurodevelopmental disorders, mental health issues, and other chronic conditions. Fragmentation in service delivery spreads responsibility for care across different ministries, and providers with expertise in adult forms of developmental conditions scarce.
NeuroDevNet's CP research group has written extensively on issues surrounding transition. Three recent publications are linked below.
Perspectives of Adolescents and Young Adults with Cerebral Palsy on the Ethical and Social Challenges Encountered in Health Care Services. By Danaë Larivière-Bastien, Annette Majnemer, Michael Shevell, Eric Racine
Transition from pediatric to adult health care for young adults with neurological disorders: Parental perspective
By Heather Davies, N, MSc(A), CNN(C), Janet Rennick, N, PhD, and Annette Majnemer, OT, PhD, FCAHS
Quality of life from the perspective of adolescents with cerebral palsy: ‘‘I just think I’m a normal kid, I just happen to have a disability’’ By Keiko Shikako-Thomas, Lucy Lach, Annette Majnemer, Jodie Nimigon, Kelti Cameron, and Michael Shevell