Abstract

The Transition from Secondary School to Adulthood: Experiences and Life Outcomes for Youth with an Intellectual Disability and Their Families

Author(s)

Paula Dyke -Telethon Institute for Child Health Research

Dr Helen Leonard -Telethon Institute for Child Health Research

Ms Jenny Bourke -Telethon Institute for Child Health Research

Ms Glenys Dixon -Telethon Institute for Child Health Research

Prof Gwynnyth Llewellyn -University of Sydney

Background:  It is believed that successful transition from school is essential for young people with an intellectual disability(ID) if those who are able to function independently are to maintain their living skills beyond the formal environment of school and participate in the social and economic life of their community.  For those with little functional independence, such as severe neurological disorders, there are likely to be major life changes as they move into adulthood with respect to where they live, who cares for them and how they will spend their days.

Objectives: The project aims to determine the experiences of young people with an ID moving from school to adult life and determine what is a 'good' outcome for the individual and the family.

Methods: Qualitative interviews, either by telephone or face-face, with up to 25 families with a child with Rett syndrome and 25 families with a child with Down syndrome are being conducted.

Results:A number of key themes emerged from rich qualitative data that described the 'lived' transition experiences for families and young people with an ID.  These preliminary results primarily related to information and support from service providers; family impact emotionally and financially; and quality of life changes for both families  and the individual with an ID

Conclusions: The experiences of families as their young adult moves from school into adulthood present many challenges for service providers and policy makers. It is imperative these are embraced if 'good outcomes' are to be achieved for the individual and the family.