Abstract
Background
Many youth are not meaningfully engaged in their school-based transition process. Understanding youth’s perceptions of their engagement and factors influencing engagement is important to increase engagement.
Design
A search of six databases produced 975 studies; 11 which were included. Inclusion criteria: Qualitative research on youth’s perspectives of the transition process in the United States; youth’s primary disability is not intellectual or physical disability. Analysis: Applied guidelines for study quality and content analysis of results sections.
Results
Youth described interactions and personal factors that contribute to disengagement in transition planning. Yet, youth have transition-related goals and preferences and take actions during transition.
Conclusions
Findings highlight the complex social structure of IEP teams and potential ways to expand transition-related interventions.
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References
Alverson, C. Y., Lindstrom, L. E., & Hirano, K. A. (2019). High school to college: Transition experiences of young adults with autism. Focus on Autism and Other Developmental Disabilities, 34(1), 52–64. https://doi.org/10.1177/1088357615611880.
Anderson, C., & Butt, C. (2017). Young adults on the autism spectrum at college: Successes and stumbling blocks. Journal of Autism and Developmental Disorders, 47(10), 3029–3039. https://doi.org/10.1007/s10803-017-3218-x.
Anderson, C., & Butt, C. (2018). Young adults on the autism spectrum: The struggle for appropriate services. Journal of Autism and Developmental Disorders, 48(11), 3912–3925. https://doi.org/10.1007/s10803-018-3673-z.
Anderson, S. C., Kuo, A. A., & Shattuck, P. T. (2018). Transition of individuals with autism to adulthood: A review of qualitative studies. Pediatrics. https://doi.org/10.1542/peds.2016-4300I.
Antshel, K. M., Faraone, S. V., & Gordon, M. (2014). Cognitive behavioral treatment outcomes in adolescent ADHD. Journal of Attention Disorders, 18(6), 483–495. https://doi.org/10.1177/1087054712443155.
Arksey, H., & Malley, L. O. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology: Theory & Practice, 8(1), 19–32 http://eprints.whiterose.ac.uk/1618/1/Scopingstudies.pdf.
Axford, N., Berry, V., Lloyd, J., Moore, D., Rogers, M., Hurst, A., et al. (2019). How can schools support parents’ engagement in their children’s learning? Evidence from research and practice. Education Endowment Foundation. Retrieved October 1, 2020 from https://educationendowmentfoundation.org.uk/evidence-summaries/evidence-reviews/parental-engagement/; https://educationendowmentfoundation.org.
Bacon, J. K., & Causton-Theoharis, J. (2013). “It should be teamwork”: A critical investigation of school practices and parent advocacy in special education. International Journal of Inclusive Education, 17(7), 682–699. https://doi.org/10.1080/13603116.2012.708060.
Banks, J. (2014). Barriers and supports to postsecondary transition: Case studies of african american students with disabilities. Remedial and Special Education, 35(1), 28–39. https://doi.org/10.1177/0741932513512209.
Barkley, R. A., Fischer, M., Smallish, L., & Fletcher, K. (2006). Young adult outcome of hyperactive children: Adaptive functioning in major life activities. Journal of the American Academy of Child & Adolescent Psychiatry, 45(2), 192–202. https://doi.org/10.1097/01.CHI.0000189134.97436.E2.
Biederman, J., Petty, C. R., Fried, R., Kaiser, R., Dolan, C. R., Schoenfeld, S., et al. (2008). Educational and occupational underattainment in adults with attention-deficit/hyperactivity disorder: A controlled study. The Journal of Clinical Psychiatry, 69(8), 1217–1222. https://doi.org/10.4088/JCP.v69n0803.
Blackorby, J., & Wagner, M. (1996). Longitudinal postschool outcomes of youth with disabilities: Findings from the National Longitudinal Transition Study. Exceptional Children, 62(5), 399–413. https://doi.org/10.1177/001440299606200502.
Cantley, P., Little, K., & Martin, J. (2010). Me! Lessons for teaching self-awareness and self-advocacy: Version 2.0. University of Oklahoma Zarrow Center for Learning Enrichment. Retrieved September 10, 2020 from https://www.ou.edu/education/centers-and-partnerships/zarrow/transition-education-materials/me-lessons-for-teaching-self-awareness-and-self-advocacy.
Carter, E. W., Lane, K. L., Cooney, M., Weir, K., Moss, C. K., & Machalicek, W. (2013). Self-determination among transition-age youth with autism or intellectual disability: Parent perspectives. Research and Practice for Persons with Severe Disabilities, 38(3). https://doi.org/10.1177/154079691303800301.
Cavendish, W., & Connor, D. (2018). Toward authentic IEPs and transition plans: Student, parent, and teacher perspectives. Learning Disability Quarterly, 41(1), 32–43. https://doi.org/10.1177/0731948716684680.
Chandroo, R., Strnadová, I., & Cumming, T. M. (2018). A systematic review of the involvement of students with autism spectrum disorder in the transition planning process: Need for voice and empowerment. Research in Developmental Disabilities, 83, 8–17. https://doi.org/10.1016/j.ridd.2018.07.011.
Charmaz, K. (2014). Constructing Grounded Theory (2nd ed.). SAGE Publications.
Cheak-Zamora, N. C., Teti, M., & First, J. (2015). “Transitions are scary for our kids, and they’re scary for us”: Family member and youth perspectives on the challenges of transitioning to adulthood with autism. Journal of Applied Research in Intellectual Disabilities, 28(6). https://doi.org/10.1111/jar.12150.
Critical Appraisal Skills Programme. (2018). CASP Qualitative Checklist. Retrieved May 8, 2018, from https://casp-uk.net/wp-content/uploads/2018/01/CASP-Qualitative-Checklist-2018.pdf
Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011). Improving the transition between paediatric and adult healthcare: A systematic review. Archives of Disease in Childhood, 96(6), 548–553. https://doi.org/10.1136/adc.2010.202473.
Dunst, C. J., & Dempsey, I. (2007). Family-professional partnerships and parenting competence, confidence, and enjoyment. International Journal of Disability, Development and Education, 54(3), 305–318. https://doi.org/10.1080/10349120701488772.
Dyke, P., Bourke, J., Llewellyn, G., & Leonard, H. (2013). The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life. Journal of Intellectual and Developmental Disability, 38(2). https://doi.org/10.3109/13668250.2013.789099.
First, J., Cheak-Zamora, N. C., & Teti, M. (2016). A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder. Journal of Family Social Work, 19(3), 220–236. https://doi.org/10.1080/10522158.2016.1185074.
Giarelli, E., Ruttenberg, J., & Segal, A. (2013). Bridges and barriers to successful transitioning as perceived by adolescents and young adults with asperger syndrome. Journal of Pediatric Nursing, 28(6), 563–574. https://doi.org/10.1016/j.pedn.2012.12.010.
Hagner, D., May, J., Kurtz, A., & Cloutier, H. (2014). Person-centered planning for transition-aged youth with autism spectrum disorders. Journal of Rehabilitation, 80(1), 4–10.
Hatfield, M., Ciccarelli, M., Falkmer, T., & Falkmer, M. (2017a). Factors related to successful transition planning for adolescents on the autism spectrum. Journal of Research in Special Educational Needs. https://doi.org/10.1111/1471-3802.12388.
Hatfield, M., Falkmer, M., Falkmer, T., & Ciccarelli, M. (2017b). “Leaps of faith”: Parents’ and professionals’ viewpoints on preparing adolescents on the autism spectrum for leaving school. Journal of Research in Special Educational Needs, 17(3). https://doi.org/10.1111/1471-3802.12377.
Individuals With Disabilities Education Act (2004). 20 U.S.C. § 1400.
Irizarry, J. G., & Raible, J. (2014). “A hidden part of me”: Latino/a students, silencing, and the epidermalization of inferiority. Equity & Excellence in Education, 47(4), 430–444. https://doi.org/10.1080/10665684.2014.958970.
Irwin, D. E., Gross, H. E., Stucky, B. D., Thissen, D., DeWitt, E. M., Lai, J. S., et al. (2012). Development of six PROMIS pediatrics proxy-report item banks. Health and Quality of Life Outcomes, 10, 1–13. https://doi.org/10.1186/1477-7525-10-22.
Jensen, L., & Allen, M. (1996). Meta-synthesis of qualitative findings. Qualitative Health Research, 6(4), 553–560. https://doi.org/10.1177/104973239600600407.
Joseph, N. M., Viesca, K. M., & Bianco, M. (2016). Black female adolescents and racism in schools: Experiences in a colorblind society. High School Journal, 100(1), 4–26.
Kagitcibasi, C. (2013). Adolescent autonomy-relatedness and the family in cultural context: What is optimal? Journal of Research on Adolescence, 23(2), 223–235. https://doi.org/10.1111/jora.12041.
Keyes, M. W., & Owens-Johnson, L. (2003). Developing person-centered IEPs. Intervention in School and Clinic, 38(3), 145–152.
Kohler, P. D., Gothberg, J. E., Fowler, C., & Coyle, J. (2016). Taxonomy for transition programming 2.0: A model for planning, organizing, and evaluating transition education, services, and programs. Kalamazoo, MI. Retrieved January 20, 2019 from https://transitionta.org/system/files/resourcetrees/Taxonomy_for_Transition_Programming_v2_508_.pdf?file=1%26type=node%26id=1727%26force.
Kuriyan, A. B., Pelham, W. E. J., Molina, B. S. G., Waschbusch, D. A., Gnagy, E. M., Sibley, M. H., et al. (2013). Young adult educational and vocational outcomes of children diagnosed with ADHD. Journal of Abnormal Child Psychology, 41(1), 27–41. https://doi.org/10.1007/s10802-012-9658-z.
Martin, J. E., Marshall, L. H., Maxson, L. M., & Jerman, P. L. (1996). The self-directed IEP. Longmont, CO. Retrieved September 10, 2020 from https://cq5publish.ou.edu/content/dam/Education/documents/miscellaneous/self-directed-iep-rev.pdf.
Martin, J. E., Marshall, L. H., & Sale, P. (2004). A 3-year study of middle, junior high, and high school IEP meetings. Exceptional Children, 70(3), 285–297. https://doi.org/10.1177/001440290407000302.
Martin, J. E., Van Dycke, J. L., Greene, B. A., Gardner, J. E., Christensen, W. R., Woods, L. L., & Lovett, D. L. (2006). Direct observation of teacher-directed IEP meetings: Establishing the need for student IEP meeting instruction. Exceptional Children, 72(2), 187–200. https://doi.org/10.1177/001440290607200204.
Maxwell, J. A. (2012). Qualitative research design: An interactive approach (3rd ed.). SAGE Publications.
Mazzotti, V. L., Rowe, D. A., Sinclair, J., Poppen, M., Woods, W. E., & Shearer, M. L. (2016). Predictors of post-school success: A systematic review of NLTS2 secondary analyses. Career Development and Transition for Exceptional Individuals, 39(4), 196–215. https://doi.org/10.1177/2165143415588047.
Mereoiu, M., Abercrombie, S., & Murray, M. M. (2016). Structured intervention as a tool to shift views of parent-professional partnerships: Impact on attitudes toward the IEP. Exceptionality Education International, 26(1), 36–52. https://ir.lib.uwo.ca/eei/vol26/iss1/3.
National Technical Assistance Center on Transition. (2016). Using published curricula to teach student involvement in the Individualized Education Program (IEP) meeting. Retrieved September 10, 2020 from https://transitionta.org/system/files/resourcetrees/PD_pubgoals.pdf.
Nelson, J. M., & Harwood, H. (2011). Learning disabilities and anxiety: A meta-analysis. Journal of Learning Disabilities, 44(1), 3–17. https://doi.org/10.1177/0022219409359939.
Newman, L. A., Wagner, M. M., Cameto, R., & Knokey, A.-M. (2009). The post-high school outcomes of youth with disabilities up to 8 years after high school. A report from the National Longituidnal Transition Study-2 (NLTS2). Menlo Park, CA. Retrieved August 5, 2018 from https://ies.ed.gov/ncser/pubs/20113005/pdf/20113005.pdf.
Papay, C. K., & Bambara, L. M. (2014). Best practices in transition to adult life for youth with intellectual disabilities. Career Development and Transition for Exceptional Individuals, 37(3), 136–148. https://doi.org/10.1177/2165143413486693.
Powers, L. E., Turner, A., Matuszewski, J., Wilson, R., & Loesch, C. (1999). A qualitative analysis of student involvement in transition planning. The Journal for Vocational Special Needs Education, 21(3), 18–26.
Powers, L. E., Turner, A., Westwood, D., Matuszewski, J., Wilson, R., & Phillips, A. (2001). TAKE CHARGE for the Future: A controlled field-test of a model to promote student involvement in transition planning. Career Development for Exceptional Individuals, 24(1), 89–104. https://doi.org/10.1177/088572880102400107.
Reid, D. K., & Valle, J. W. (2004). The discursive practice of learning disability: Implications for instruction and parent-school relations. Journal of Learning Disabilities, 37(6), 466–481. https://doi.org/10.1177/00222194040370060101.
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National autism indicators report: Transition into young adulthood. Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. Retrieved August 5, 2018 from https://drexel.edu/autismoutcomes/publications-and-reports/publications/National-Autism-Indicators-Report-Transition-to-Adulthood/.
Ruble, L. A., McGrew, J. H., Toland, M., Dalrymple, N., Adams, M., & Snell-Rood, C. (2018). Randomized control trial of COMPASS for improving transition outcomes of students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(10), 3586–3595. https://doi.org/10.1007/s10803-018-3623-9.
Sandelowski, M., Docherty, S., & Emden, C. (1997). Qualitative metasynthesis: Issues and techniques. Research in Nursing & Health, 20(4), 365–371. https://doi.org/10.1002/(sici)1098-240x(199708)20:4<365::aid-nur9>3.3.co;2-7.
Sayman, D. (2015). I still need my security teddy bear: Experiences of an individual with autism spectrum disorder in higher education. Learning Assistance Review, 20(1), 77–98.
Sharfi, K., & Rosenblum, S. (2014). Activity and participation characteristics of adults with learning disabilities - A systematic review. PLoS ONE, 9(9). https://doi.org/10.1371/journal.pone.0106657.
Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Rifenbark, G. G., & Little, T. D. (2015). Relationships between self-determination and postschool outcomes for youth with disabilities. The Journal of Special Education, 48(4), 256–267. https://doi.org/10.1177/0022466913489733.
Shogren, K. A., Wehmeyer, M. L., & Thompson, J. R. (2017). Person-centered and student-directed planning. In M. L. Wehmeyer & K. A. Shogren (Eds.), Handbook of research-based practices for educating students with intellectual disability (pp. 167–182). Routledge.
Smetana, J. G., Metzger, A., Gettman, D. C., & Campione-Barr, N. (2006). Disclosure and secrecy in adolescent-parent relationships. Child Development, 77(1), 201–217. https://doi.org/10.1111/j.1467-8624.2006.00865.x.
Sosnowy, C., Silverman, C., & Shattuck, P. (2017). Parents’ and young adults’ perspectives on transition outcomes for young adults with autism. Autism, 22(1), 29–39. https://doi.org/10.1177/1362361317699585.
van Steensel, F. J. A., & Heeman, E. J. (2017). Anxiety levels in children with autism spectrum disorder: A meta-analysis. Journal of Child and Family Studies, 26(7), 1753–1767. https://doi.org/10.1007/s10826-017-0687-7.
Stewart, D. (2009). Transition to adult services for young people with disabilities: Current evidence to guide future research. Developmental Medicine & Child Neurology, 51, 169–173. https://doi.org/10.1111/j.1469-8749.2009.03419.x.
Test, D. W., Mazzotti, V. L., Mustian, A. L., Fowler, C. H., Kortering, L., & Kohler, P. (2009). Evidence-based secondary transition predictors for improving postschool outcomes for students with disabilities. Career Development for Exceptional Individuals, 32(3), 160–181. https://doi.org/10.1177/0885728809346960.
Thoma, C. A., & Getzel, E. E. (2005). “Self-determination is what it’s all about”: What post-secondary students with disabilities tell us are important considerations for success. Education and Training in Developmental Disabilities, 40(3), 234–242 https://www.jstor.org/stable/23879718.
Thomas, J., & Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8(45), 1–10. https://doi.org/10.1186/1471-2288-8-45.
Trainor, A. A. (2005). Self-determination perceptions and behaviors of diverse students with LD during the transition planning process. Journal of Learning Disabilities, 38(3), 233–249. https://doi.org/10.1177/00222194050380030501.
Tucker, V., & Schwartz, I. (2013). Parents’ perspectives of collaboration with school professionals: Barriers and facilitators to successful partnerships in planning for students with ASD. School Mental Health, 5(1), 3–14. https://doi.org/10.1007/s12310-012-9102-0.
Tummala-narra, P., & Sathasivam-Rueckert, N. (2016). The experience of ethnic and racial group membership among immigrant-origin adolescents. Journal of Adolescent Research, 31(3), 299–342. https://doi.org/10.1177/0743558415592178.
U.S. Department of Education Office for Civil Rights. (2016). 2013-2014 civil rights data collection: A first look. Retrieved August 5, 2018 from https://www2.ed.gov/about/offices/list/ocr/docs/2013-14-first-look.pdf.
Ung, D., Selles, R., Small, B. J., & Storch, E. A. (2015). A systematic review and meta-analysis of cognitive-behavioral therapy for anxiety in youth with high-functioning autism spectrum disorders. Child Psychiatry & Human Development, 46, 533–547. https://doi.org/10.1007/s10578-014-0494-y.
Valle, J. W., & Aponte, E. (2002). IDEA and collaboration: A Bakhtinian perspective on parent and professional discourse. Journal of Learning Disabilities, 35(5), 469–479. https://doi.org/10.1177/00222194020350050701.
Wagner, M., Newman, L., Cameto, R., Javitz, H., & Valdes, K. (2012). A national picture of parent and youth participation in IEP and transition planning meetings. Journal of Disability Policy Studies, 23(3), 140–155. https://doi.org/10.1177/1044207311425384.
Wehmeyer, M. L., Palmer, S. B., Lee, Y., Williams-diehm, K., & Shogren, K. (2011). A randomized-trial evaluation of the effect of Whose Future Is It Anyway ? on self-determination. Career Development and Transition for Exceptional Individuals, 34(1), 45–56. https://doi.org/10.1177/0885728810383559.
Wehmeyer, M. L., Palmer, S. B., Shogren, K., Williams-Diehm, K., & Soukup, J. (2013). Establishing a causal relationship between interventions to promote self-determination and enhanced student self-determination. The Journal of Special Education, 46(4). https://doi.org/10.1177/0022466910392377.
Williams-Diehm, K. L., Brandes, J. A., Chesnut, P. W., & Haring, K. A. (2014). Student and parent IEP collaboration: A comparison across school settings. Rural Special Education Quarterly, 33(1), 3–11. https://doi.org/10.1177/875687051403300102.
Wolfe, K., & Duran, L. K. (2013). Culturally and linguistically diverse parents’ perceptions of the IEP process: A review of current research. Multiple Voices for Ethnically Diverse Exceptional Learners, 13(2), 4–18. https://doi.org/10.5555/muvo.13.2.y452140732mlg231.
Zukerman, J. M., Devine, K. A., & Holmbeck, G. N. (2011). Adolescent predictors of emerging adulthood milestones in youth with spina bifida. Journal of Pediatric Psychology, 36(3), 265–276. https://doi.org/10.1093/jpepsy/jsq075.
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Munsell, E.G.S., Schwartz, A.E. Youth Experiences of the IDEA-Mandated Transition Planning Process: a Metasynthesis of Youth Voices. Rev J Autism Dev Disord 9, 438–451 (2022). https://doi.org/10.1007/s40489-021-00268-5
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DOI: https://doi.org/10.1007/s40489-021-00268-5