Phenomenological Study of the Transition Process for Adolescents With Intellectual and Developmental Disabilities

Jeryl D. Benson, Jeryl D. Benson, EdD, OTR/L, is Associate Professor, Department of Occupational Therapy, Duquesne University, Pittsburgh, PA;
Rachel Tokarski, Rachel Tokarski, MS, OTR/L, is Staff Occupational Therapist, Sensory Link Pediatric Therapy, Pittsburgh, PA.
Meghan G. Blaskowitz, Meghan G. Blaskowitz, PhD, OTR/L, is Assistant Professor, Department of Occupational Therapy, Duquesne University, Pittsburgh, PA.
Ashlyn Geubtner, Ashlyn Geubtner, OTD, OTR/L, is Adjunct Instructor, Department of Occupational Therapy, Duquesne University, Pittsburgh, PA.


IMPORTANCE: Occupational therapy practitioners should understand the barriers faced by young adults with intellectual and developmental disabilities (IDD) who are attempting a successful transition to postsecondary work, higher education, community and social activities, and living opportunities so they can better advocate for them and tailor their involvement in the transition process. OBJECTIVE: To explore the lived experience of parents of adolescents with IDD participating in the transition process. DESIGN: Phenomenological design. SETTING: Community-based setting with interviews occurring face-to-face in the participants' home or via telephone. PARTICIPANTS: Eleven parents of adolescents and young adults (ages 16-22 yr) with IDD. Outcomes and Measures: Semistructured interviews focusing on parent and family experiences with the transition process. RESULTS: Seven themes emerged from the data representing parent perceptions related to the use or lack of person-centered practices, needing more communication from the team, frustration with being the driving force of progress, feelings of defeat, gaps between programming options, positive team collaboration, and planning for the future. CONCLUSIONS AND RELEVANCE: Parents identified person-centered planning, guidance from school staff, and resource sharing as desired practices in the transition planning process. The outcomes indicate that some aspects of the transition process have not changed in several decades. What This Article Adds: Occupational therapy practitioners are optimally positioned to remediate transition issues; therefore, it is essential that they assert their integral role in the transition planning process to increase self-determination and quality of life for all adolescents and young adults with IDD.