Project 465983

Survival to adulthood for people with childhood-onset disabilities such as cerebral palsy, spina bifida and developmental disability has increased drastically over the past several decades such that adults with these conditions now outnumber children. This has resulted in an increasing number of people "graduating" from a well-structured system in childhood to the adult setting that is disconnected, underfunded, and has a lack of dedicated healthcare providers with the knowledge, expertise or interest required to treat adults with childhood-onset disabilities. The Transitional and Lifelong Care (TLC) Program at Parkwood Institute in London, Ontario addresses a gap in the healthcare system and is a model that could transform the care received by these individuals in all areas of the country. The TLC program provides integrated care including assessment, treatment and consultation to adults with childhood-onset disabilities across many different provider types. This study is a program evaluation and will specifically assess the effectiveness of the TLC program compared to the current standard of care with respect to 1) the level of support and satisfaction with the healthcare services of patients and their caregivers, 2) the general health and wellbeing of adults with childhood-onset disabilities and their caregivers, and 3) the financial impact of a coordinated transitional and lifelong care program on the healthcare system.