Stakeholder Perspective on Transition Planning for Youth with ASD
Although federal law mandates that all youth with disabilities in special education have transition plans to facilitate the “hand-off” to adult services, research on transition planning and implementation indicates we are falling short for students with autism spectrum disorder (ASD). Specifically, transition planning for youth with ASD is poorly understood, and little is known about how transition is actually perceived and experienced directly from the perspective of stakeholders.
To describe stakeholder perspectives on (i) the strengths and weaknesses of existing state/local policies, procedures, services, and resources and the changes needed to support effective transition, and (ii) concerns associated with adult services such as housing, social security, health insurance, transportation.
Participants (n=42) were individuals with ASD, parents, teachers, school administrators, adult service providers, and state policy makers from the offices of Vocational Rehabilitation (OVR), Special Education, Medicaid, and Developmental Disabilities. A total of 10 focus groups were conducted. Each 1-hr session was recorded and transcribed for coding and analysis. Qualitative content analysis was oriented around identifying deductive themes in the data. Agreement for themes was assured with a minimum of two research analysts collaborating on the transcript-based analysis. After reading the transcripts, the team composed an initial codebook and revised the codes through a consensus-based iterative process. Once each coding pair reached inter-rater reliability of at least 80%, codes were applied to the rest of the interview independently. Coders worked in pairs to apply codes line by line to the text. A total of 15 content codes were identified.
(i) Strengths and weaknesses of state policies, procedures, services, and resources that exist or are needed: Several criticisms of state policies and procedures emerged from the interviews, especially for the OVR which is not very involved with transition planning. Participants criticized OVR for limited support for adult education and vocational training, and lack of knowledge about ASD. Participants critiqued schools’ inadequate funding for appropriate transition assessment tools and community based instruction. Some felt educators and administrators were resistant to adjusting curricula for applied skill development for students withi a regular diploma. Stakeholders were concerned that students pursuing the alternative assessment/diploma track would have difficulty obtaining a job; yet the use of the word “diploma” might misrepresent the student’s skill set. Finally, participants advocated for the need for an experienced navigator to guide the student and his/her family throughout the transition process.
(ii) Concerns about adult services: Participants reported a lack of knowledge about the role of OVR in transition, services available after transition, and how to access services. Participants emphasized the need for parents to apply for Medicaid waiver services early. Many commented that adult service providers lacked understanding of ASD and consequently had difficulty providing appropriate services. Finally, transportation was a challenge for participants seeking services in rural areas.
Stakeholder perspectives on transition planning emphasized better involvement of OVR, curricular changes based on individual student needs, support for parent navigation, better trained service providers, and access to services- important factors necessary to consider in intervention research.