Resources for practitioners
Center for Health Care Transition Improvement. (2014). Six Core Elements of Health Care Transition 2.0. Retrieved May 6, 2019, from https://www.gottransition.org/providers/index.cfm
Autistic Advocacy. Roadmap to transition: A handbook for autistic youth transitioning to adulthood. Retrieved May 6, 2019. Roadmap-to- Transition-A-Handbook-for-Autistic-Youth-Transitioning-to-Adulthood.pdf. [See in particular chapter 10 on medical transition.]
Carolina Health and Transition. A Youth Guide to Transition from Pediatric to Adult Health Care. (2009). Retrieved May 6, 2019. https://sys.mahec.net/media/brochures/youth_guide.pdf
National Alliance to Advance Adolescent Health. Got Transition? https://www.gottransition.org/
Exceptional Children's Assistance Center. See the list of linked resources for the transition to adulthood, gathered from a wide variety of sources and covering diverse disorders, but note that some of the dated resources may not contain current information. https://www.ecac-parentcenter.org/transition-to-adulthood/
References
American College of Physicians. (2016). HVC Pediatric to Adult Care Transition Intellectual Disabilities/Developmental Disabilities (ID/DD). Retrieved from
https://www.acponline.org/sites/default/files/documents/clinical_information/high_value_care/clinician_resources/pediatric_adult_care_transitions/gim_dd/idd_transitions_tools.pdf . [“In order to help facilitate this transition and ensure good communication and care coordination, the primary care work group developed tools specific to the needs of young adults with intellectual disabilities or other developmental disabilities. The work group included input from primary care providers and young adults as well.”]
Brown, L. W., Camfield, P., Capers, M., Cascino, G., Ciccarelli, M., De Gusmao, C. M., ... & Schultz, R. (2016). The neurologist's role in supporting transition to adult health care: A consensus statement. Neurology, 87(8), 835-840.
Center for Health Care Transition Improvement. (2014). Six Core Elements of Health Care Transition 2.0. Retrieved May 6, 2019, from https://www.gottransition.org/providers/index.cfm
Child Neurology Foundation. Transition of Care. Retrieved May 6, 2019, from https://www.childneurologyfoundation.org/transitions/
Cooley, W. C., & Sagerman, P. J. (2011). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128(1), 182-200.
Dressler, P. B., Nguyen, T. K., Moody, E. J., Friedman, S. L., & Pickler, L. (2018). Use of transition resources by primary care providers for youth with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 56(1), 56-68.
Hagan, J. F., Shaw, J. S., & Duncan, P. M. (2007). Bright futures: Guidelines for health supervision of infants, children, and adolescents. American Academy of Pediatrics.
Mora, M. A., Moons, P., Sparud-Lundin, C., Bratt, E. L., & Goossens, E. (2016). Assessing the level of evidence on transfer and transition in young people with chronic conditions: Protocol of a scoping review. Systematic Reviews, 5(1), 166.
Tilton, A. H. (2018). Transition from pediatric to adult neurologic care. Continuum (Minneapolis, Minn.), 24(1, Child Neurology), 276-287.
Wiegerink, D., Roebroeck, M., Bender, J., Stam, H., Cohen-Kettenis, P., & Transition Research Group South West Netherlands. (2011). Sexuality of young adults with cerebral palsy: Experienced limitations and needs. Sexuality and Disability, 29(2), 119-128.
White, P. H., Cooley, W. C., American Academy of Pediatrics, & American Academy of Family Physicians. (2018). Supporting the health care transition from adolescence to adulthood in the medical home.
Pediatrics, 142(5), e20182587.
Author
Diana M. Cejas, M.D., M.P.H., Assistant Professor of Neurology, Carolina Institute for Developmental Disabilities (CIDD), The University of North Carolina at Chapel Hill. Dr. Cejas is a pediatric neurologist whose work and research are focused on children, adolescents, and young adults with neurodevelopmental disabilities and on health care transitions for this population.
Developed for the NC Division of Mental Health, Developmental Disabilities, and Substance Abuse Services by the UNC's Carolina Institute for Developmental Disabilities and by Behavioral Health Springboard, School of Social Work, The University of North Carolina at Chapel Hill.