Transition to adult services for young people with disabilities:current evidence to guide future research
DEBRA STEWART MSC OT REG
691 words
The transition from adolescence to adulthood is an important developmental stage for all young people.1 This period of transition presents particular challenges for youth with disabilities, their families, their medical and rehabilitation teams, and the broader healthcare system.2,3 Young people with disabilities face numerous barriers in achieving autonomy and independence, and they often need support from their family and community to make a successful transition into the adult world.4,5Almost two decades of study indicate that young people with disabilities and chronic health conditions do not have the same outcomes as their peers on such important domains as health status, academic achievement, interpersonal relationships, community participation, and employment.
During the transition to adulthood, young people with disabilities are transferred from child- and family-centred systems, such as school and pediatric rehabilitation centres, into adult systems6,8 The importance of adequate preparation for young people with chronic health conditions and disabilities as they move towards adulthood has been identified by a joint consensus statement on healthcare transitions released by three American professional bodies representing pediatricians, family physicians, and internists.2 Whereas earlier consensus statements focused on transition from pediatric to adult healthcare institutions,9 recent publications promote a more holistic set of goals highlighting the need for services to maximize lifelong functioning, not just preparation for a new healthcareenvironment. 2,10 Although the idea of a holistic, functional approach to adult transitions for young people with disabilities is now being advocated, there are few guidelines available to guide stakeholders towards this goal. . . .
Successful transition from pediatric to adult services in the areas of healthcare, education, andemployment is thought to result from early planning, often in the years leading up to transition to adult services and environments. Programs and resources that facilitate the skills required for youngpeople to function in adult environments should focus on self-determination, problem-solving, and relationship building. Environmental supports, including capacity building in all adult services, are also considered to be important factors for any successful transition. Communication between healthcare providers, educators, policy makers, and community must occur to facilitate seamless, successful transition.
Leadership and supports to aid in the transition were identified, as was the need to continue these supports in the adult environment through roles such as case managers, primary care physicians, parent-to-parent networks, community facilitators, and ⁄ or peer mentors. Funding ideas that promote flexibility to customize the types of services for each individual, along with promotingflexibility as to where and when the services are utilized, is important. The need for choice in fundingmodels was identified by many people. Finally, many study participants endorsed a more holistic view of transition that would expand to consider the entire life course of an individual and family .
FUTURE INVESTIGATION IN THIS AREA
Our current knowledge about transition to adulthood andLife course approaches in general for young people with disabilities is at a ‘component’ level: we know a lot about the different components or elements that contribute to a successful transition. We do not yet know which combinationof components will make the most difference. This should be the focus of research now. For example, a service could focus on capacity building of young people, parents, and community members together. A multidimensional, mixed-methods approach to evaluation of this type of service would probably be needed. . . . childhood impairment alone does not contribute to a person’s difficulties during the transition into adult roles. . . . interventions to reduce activity limitations and strategies to increase attendance in postsecondary education may increase the likelihood for the acquisition of adult social roles among young adults with childhood impairment. . . . Persons with disabilities go through numerous transitions throughout their lives, and services that address all aspects of a person’s lifespan have been recommended in the literature and by persons with disabilities. Researchers should bear this holistic functional approach in mind if future scientific investigation is to be meaningful.