A Qualitative Study of the Transition From an Educational Setting to Adulthood for Youth With Intellectual and Developmental Disabilities (IDD)

PURPOSE: Compared to typically developing peers, adolescents with disabilities experience unique challenges during the transitional process (Hetherington et al., 2010). Institutional and personal barriers can result in educational, vocational, interpersonal, and medical challenges (Hetherington et al., 2010). Existing literature highlights areas of dissatisfaction and includes “inadequate communication from school staff, frustration with assumptions made about the student, funneling of the student into traditional adult service programs, and a lack of accountability from the schools” (Hetherington et al., 2010, p. 163). Dissatisfaction also lies in the lack of direct engagement of students in the transition process (Hetherington et al., 2010). Even when students are directly engaged in the process, they have still experienced inadequate transition planning (Hetherington et al., 2010).

This study sought to understand the perspectives of parents of adolescents with Intellectual and Developmental Disabilities (IDD) transitioning from an educational setting, and the perspectives of these young adults. Literature supporting transition planning for this population is underrepresented. To address this gap, this study answered the research questions: 1. How do parents of adolescents with IDD perceive and describe the transition process from an educational setting? 2. How do adolescents with IDD perceive and describe the transition process?

DESIGN: This phenomenological study utilized purposive, snowball sampling to gather participants. Inclusion criteria were adolescents aged 16-21 with IDD experiencing the transition process or the parent of such an individual. There were 13 total participants: 2 adolescents and 11 parents.

METHOD: Semi-structured interviews were conducted. An interview guide was utilized to provide structure to each interview. Interviews were recorded and transcribed. Open and axial coding was completed by 3 researchers resulting in final themes.

RESULTS: Resulting themes are: 1. Finding the right fit: Match between client & context 2. “Walking the path alone”: Understanding parent & student perspectives 3. Going above & beyond: Relationship between family & the professionals 4. “A different world”: Building a bridge between family & community 5. “Pathway of the transition process”: Exploration to implementation 6. Creating a supportive environment through open communication 7. Falling short: Parents’ desire for more 8. No progress without parents: Parents as the (sometimes reluctant) driving force. These themes mirror results in the past literature in that parents and adolescents are looking for more from the transition process (Hetherington et al., 2010).

CONCLUSION: Results indicate that parents identify client-centered planning, staff guidance, resource sharing, and communication as the desired practices during transition. Current literature supports this finding, describing a successful transition as one that allows active participation of the entire family (Agran et al., 2008; Carter et al., 2006; Martin et al., 2006). Adolescents identify client centeredness and relationships as the most important part of the process. This is supported by Hetherington et al. (2010), correlating with the finding that “dissatisfaction...results from the lack of direct engagement for students in the transition planning process.” It is essential to understand where the team is falling short. Practice should address contextual, community-based placements, relationships, deliverance of resources, guidance throughout the process, open communication, and continuous education on the transition continuum. An understanding of the parent and adolescent perspectives provides the occupational therapist tools to support the transition process.

References

Hetherington, S. A., Durant-Jones, L., Johnson, K., Nolan, K., Smith, E., Taylor-Brown, S., & Tuttle, J. (2010). The Lived Experiences of Adolescents with Disabilities and Their Parents in Transition Planning. Focus on Autism and Other Developmental Disabilities, 25(3), 163-172. doi:10.1177/1088357610373760

Agran, M., Wehmeyer, M. L., Cavin, M., & Palmer, S. (2008). Promoting Student Active Classroom Participation Skills Through Instruction to Promote Self-Regulated Learning and Self-Determination. Career Development for Exceptional Individuals, 31(2), 106-114. doi:10.1177/0885728808317656

Carter, E. W., Lane, K. L., Pierson, M. R., & Glaeser, B. (2006). Self-Determination Skills and Opportunities of Transition-Age Youth with Emotional Disturbance and Learning Disabilities. Exceptional Children, 72(3), 333-346. doi:10.1177/001440290607200305

Martin, J. E., Dycke, J. L., Christensen, W. R., Greene, B. A., Gardner, J. E., & Lovett, D. L. (2006). Increasing Student Participation in IEP Meetings: Establishing the Self-Directed IEP as an Evidenced-Based Practice. Exceptional Children, 72(3), 299-316. doi:10.1177/001440290607200303