The transition from paediatric to adult health care services for young adults with a disability: an ethical perspective

Abstract

Young children with disabilities and their carers or parents tend to form a long-term dependent relationship with a paediatrician throughout childhood. At some stage when the young person with a disability reaches early adulthood, the relationship is severed. This paper draws upon recent research undertaken by the authors that describes the difficulties experienced by young people with disabilities as they go through the transition from paediatric care to adult mainstream health care services. The purpose of this article is to present the argument that the dependent,paternalistic relationship that tends to exist between young people with disabilities (and/or their carers) and paediatricians throughout childhood does not facilitate the successful negotiation of adult mainstream health care services, nor optimally promote the well-being of these young people with disabilities. It is proposed that the promotion of autonomy (or self-determination) via a well planned transition program will increase the likelihood that young adults with disabilities and/or their carers will be empowered to successfully negotiate the current mainstream health care system in Australia, and will enhance the well-being of young adults with disabilities.