Barriers to transition planning for parents of adolescents with special health care needs

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Research to Practice


This study used a focus group approach to examine the transition planning experiences and concerns of 30 family members of young adults with special health care needs throughout Massachusetts. Findings indicated: (1) parents experienced challenges with service delivery systems, day-to-day living, residential location, and uncertainty about the future; (2) parents struggled with the challenges of day-to-day living, including the management of responsibilities and obligations as well as the provision of daily specialized care; (3) parents described challenges associated with residential location, including poor transportation, greater isolation, and difficulty accessing resources; and (4) parents were challenged by the future uncertainty of adult supports and resources and were concerned about what might happen after they are no longer able to care for their son or daughter. Results suggested recommendations concerning improved access to information, establishment of longitudinal supports, and the need for flexible resources.