“A somewhat different journey” Living with Down Syndrome: the transition to adult life for persons with Down Syndrome

Lisbeth Trille G. Loft, Brown University
Dennis Hogan, Brown University

The family is the most important institution in providing care and support for a child. However, when a child is disabled, our general understanding of appropriate support might face new challenges. The experiences of families are closely linked to the outcome of the children in the family. So far there has been little research aiming to understand the period of transition to adulthood exclusively for people with Down syndrome, and what facilitates a successful transition to taking on adult roles. This paper aims to identify the social and demographic factors, individual intellectual and personality characteristics of the adolescents, types of family functioning, and public policy interventions that as facilitators for young people with Down syndrome as they age from adolescents to adult life. A successful transition to adulthood in this context is understood as obtaining adequate degrees of self-sufficiency to live a relatively independent life. It should be noted that people with Down syndrome often differ significantly in their individual abilities, and this proposed study is focused on this difference within the group of people with Down syndrome. This paper considers what available resources have significant effect on the person with Down syndrome to gain optimal levels of self-sufficiency. The goal is to present results from some of the most recent and unique data, together with providing new insights to the trajectory of persons in their transitional stages living with Down syndrome.