Policy & Research
Aging Out of Public Programs
Produced by The National Alliance to Advance Adolescent Health/Got Transition, with funding from the Lucile Packard Foundation for Children's Health and the WITH Foundation.
- A National Report on Youth and Young Adults with Disabilities Aging Out of Medicaid, CHIP, SSI, and Title V Programs: Barriers, Inequities, and Recommendations
- Policy Brief on Medicaid & CHIP: Recommendations to Assist Youth and Young Adults with Disabilities Aging Out of Medicaid & CHIP
- Policy Brief on SSI: Recommendations to Assist Youth and Young Adults with Disabilities Aging Out of SSI
- Policy Brief on Title V: Recommendations to Assist Youth and Young Adults with Special Health Care Needs Aging Out of Title V
- A Five State Case Study: Black Youth and Young Adults with Disabilities Aging Out of Medicaid, CHIP, SSI, and Title V Programs
- Webinar Recording: Aging Out of Public Program Services (May 2024)
- Webinar Slides: Aging Out of Public Program Services (May 2024)
MACPAC Recommendations on Health Care Transition
- Strategies for Title V Agencies: MACPAC Recommendations to Improve the Transition from Pediatric to Adult Health Care for CYSHCN
- MACPAC’s Recommendation to Congress on Transitions to Adult Medicaid Coverage for Children and Youth with Special Health Care Needs (June 2026)
- Webinar Recording: MACPAC’s Recommendations to Congress on Improving Continuity of Coverage for CYSHCN During Transitions to Adult Medicaid Coverage (Oct 2026)
- Webinar Slides: MACPAC’s Recommendations to Congress on Improving Continuity of Coverage for CYSHCN During Transitions to Adult Medicaid Coverage (Oct 2026)
- MACPAC’s Recommendation to Congress on Children and Youth with Special Health Care Needs Transitions of Care (June 2025)
- Webinar Recording: MACPAC’s Recommendations to Congress on Improving Pediatric to Adult Health Care Transitions in Medicaid (July 2025)
- Webinar Slides: MACPAC’s Recommendations to Congress on Improving Pediatric to Adult Health Care Transitions in Medicaid (July 2025)
Payment
- Coding Resources from the American Academy of Family Physicians
- Paying For Health Care Transition Services Under Medicaid’s Early and Periodic, Screening, Diagnosis, and Treatment (EPSDT) Benefit: Rhode Island State Example (2026)
- Coding Resources from the American Academy of Pediatrics
- Coding Resources from the American College of Physicians
- Coding Resources from the American Medical Association
- ICD-10-CM Code to Report Counseling on Transfer to Adult Provider from AAP Pediatric Health Care Systems and Finance Transformation
- Value-Based Payment to Support Health Care Transition for Young Adults with Intellectual and Developmental Disabilities: A Feasibility Study with funding from the WITH Foundation (2023)
- Quality Measurement Gaps in Pediatric-To-Adult Health Care Transition in the United States: A Framework to Guide Development of New Measures with funding from the Lucile Packard Foundation for Children’s Health (2023)
- A Guide for Designing a Value-Based Payment Initiative for Pediatric-to-Adult Transitional Care with funding from the Lucile Packard Foundation for Children’s Health (2022)
- Webinar Recording: Designing Value-Based Payment (VBP) Innovations for Pediatric-to-Adult Transitional Care: Lessons from the Field with funding from the Lucile Packard Foundation for Children’s Health
- Webinar Slides: Designing Value-Based Payment (VBP) Innovations for Pediatric-to-Adult Transitional Care: Lessons from the Field with funding from the Lucile Packard Foundation for Children’s Health
- The Business Case for Pediatric-to-Adult Health Care Transition with funding from the Lucile Packard Foundation for Children’s Health (2021)
- Recommendations for Value-Based Transition Payment for Pediatric and Adult Health Care Systems: A Leadership Roundtable Report with funding from the Lucile Packard Foundation for Children’s Health (2018)
Got Transition Resources
- 2025 Coding and Payment Resource for Transition from Pediatric to Adult Health Care in partnership with the American Academy of Pediatrics
- EPSDT and Health Care Transition: New Guidance from CMS with funding from the Lucile Packard Foundation for Children’s Health (2024)
- Strengthening the Adult Primary Care Workforce to Support Young Adults with Medical Complexity Transitioning to Adult Health Care with the Fitzhugh Mullan Institute for Health Workforce Equity at The George Washington University (2023)
- Webinar Recording: New Recommendations to Strengthen the Adult Primary Care Workforce for Young Adults with Medical Complexity with the Fitzhugh Mullan Institute for Health Workforce Equity (George Washington University)
- Medicaid Managed Care Contract Language to Expand the Availability of Pediatric-to-Adult Transitional Care with funding from Lucile Packard Foundation for Children's Health (2020)
- Webinar Recording: Medicaid Managed Care Contract Provisions for Pediatric to Adult Transitional Care: Suggested Options and State Examples with funding from Lucile Packard Foundation for Children's Health
- Webinar Slides: Medicaid Managed Care Contract Provisions for Pediatric to Adult Transitional Care: Suggested Options and State Examples with funding from Lucile Packard Foundation
Systematic and Scoping Reviews on HCT
- Social and Structural Drivers of Health and Transition to Adult Care by Bailey et al (2024)
- Health care transition for cerebral palsy with intellectual disabilities: A systematic review by Osako et al (2023)
- Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review by Bassareo et al (2023)
- Programs for Care System Transitions in Mental Health: A Systematic Review by Apaydin et al (2022)
- Transition to adult care in epilepsy: A systematic review by Goselink et al (2022)
- Transition Interventions for Adolescents on Antiretroviral Therapy on Transfer from Pediatric to Adult Healthcare: A Systematic Review by Jegede & van Wyk (2022)
- Parents' experiences with health care transition of their adolescents and young adults with medically complex conditions: A scoping review by Ellison et al (2022)
- Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review by Varshney et al (2022)
- Biopsychosocial Factors Related to Transition Among Adolescents and Young Adults with Sickle Cell Disease: A Systematic Review by Rea et al (2021)
- Somatic Outcomes of Young People with Chronic Diseases Participating in Transition Programs: A Systematic Review by Becker et al (2020)
- Psychosocial Benefit and Adherence of Adolescents with Chronic Diseases Participating in Transition Programs: A Systematic Review by Ravens et al (2020)
- Patients’ attitudes and experiences of transition from paediatric to adult healthcare in rheumatology: a qualitative systematic review by Kelly et al (2020)
- Youths' Experiences of Transition from Pediatric to Adult Care: An Updated Qualitative Metasynthesis by Varty et al (2020)
- Healthcare Retention and Clinical Outcomes Among Adolescents Living with HIV after Transition from Pediatric to Adult Care: A Systematic Review by Ritchwood et al (2020)
- Transition from Pediatric to Adult Follow-Up Care in Childhood Cancer Survivors: A Systematic Review by Otth et al (2020)
- Systematic Narrative Review of Pediatric-to-Adult Care Transition Models for Youth with Pediatric-Onset Chronic Conditions by Marani et al (2020)
- Identifying Core Components and Indicators of Successful Transitions from Child to Adult Mental Health Services: A Scoping Review by Cleverley et al (2020)
- Spotlight on Transition in Patients with Inflammatory Bowel Disease: A Systematic Review by Eros et al (2020)
- Outcomes of Pediatric to Adult Health Care Transition Interventions: An Updated Systematic Review by Schmidt et al (2020)
- Recommendations for Successful Transition of Adolescents with Inflammatory Bowel Diseases to Adult Care by Shapiro et al (2020)
- Methods for Measuring the Time of Transfer from Pediatric to Adult Care for Chronic Conditions Using Administrative Data: A Scoping Review by Shulman, et al (2020)
- Outcomes of Young People Who Reach the Transition Boundary of Child and Adolescent Mental Health Services: A Systematic Review by Appleton et al (2019)
- Transitioning Adolescents to Adult Nephrology Care: A Systematic Review of the Experiences of Adolescents, Parents, and Health Professionals by Crawford et al (2019)
- Disparities Based on Race, Ethnicity, and Socioeconomic Status Over the Transition to Adulthood Among Adolescents and Young Adults on the Autism Spectrum: a Systematic Review by Eilenberg et al (2019)
- An Evidence Map for Interventions Addressing Transition from Pediatric to Adult Care: A Systematic Review of Systematic Reviews by Hart et al (2019)
- Review: Transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS): A Meta-Synthesis of Parental and Professional Perspectives by Hill et al (2019)
- Barriers and Facilitators to the Successful Transition of Adolescents Living with HIV from Pediatric to Adult Care in Low and Middle-Income Countries: A Systematic Review and Policy Analysis by Jones et al (2019)
- Barriers and Characteristics for Successful Transition to Adult Healthcare for Individuals with Cerebral Palsy: A Systematic Review by Lilly et al (2019)
- Training of Adult Psychiatrists and Child and Adolescent Psychiatrists in Europe: A Systematic Review of Training Characteristics and Transition from Child/Adolescent to Adult Mental Health Services by Russet et al (2019)
- A Systematic Review of Transition Readiness in Youth with Chronic Disease by Varty & Popejoy (2019)
- The Impact of Age of Transfer on Outcomes in the Transition from Pediatric to Adult Health Systems: A Systematic Review of Reviews by Yassaee et al (2019)
- Barriers to Transition From Pediatric to Adult Care: A Systematic Review by Gray et al (2018)
- Review: Experiences of Healthcare Transitions for Young People with Attention Deficit Hyperactivity Disorder: A Systematic Review of Qualitative Research by Price et al (2018)
- Healthcare Transition in Pediatrics and Young Adults with Inflammatory Bowel Disease: A Scoping Review by Rohatinsky et al (2018)
- Measurable Outcomes After Transfer from Pediatric to Adult Providers in Youth With Chronic Illness by Coyne et al (2017)
- Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review by Gabriel et al (2017)
- Parenting a Child with Chronic Illness as They Transition Into Adulthood: A Systematic Review and Thematic Synthesis of Parents' Experiences by Heath et al (2017)
- Methodology Used in Comparative Studies Assessing Programmes of Transition from Paediatrics to Adult Care Programmes: A Systematic Review by Le Roux et al (2017)
- Preventing Youth from Falling Through the Cracks Between Child/Adolescent and Adult Mental Health Services: A Systematic Review of Models of Care by Nguyen at al (2017)
- Systematic Review: Health Care Transition Practice Service Models by Betz et al (2016)
- Primary Care Interventions to Improve Transition of Youth With Chronic Health Conditions from Paediatric to Adult Healthcare: A Systematic Review by Bhawra et al (2016)
- Transition of Care for Adolescents from Paediatric Services to Adult Health Services by Campbell et al (2016)
- A Scoping Review of Evaluated Interventions Addressing Developmental Transitions for Youth with Mental Health Disorders by Di Rezze et al (2016)
- Effectiveness of Health System Services and Programs for Youth to Adult Transitions in Mental Health Care: A Systematic Review of Academic Literature by Embrett et al (2016)
- Living a Normal Life in an Extraordinary Way: A Systematic Review Investigating Experiences of Families of Young People's Transition Into Adulthood When Affected by a Genetic and Chronic Childhood Condition by Waldbath et al (2016)
- Systematic Review of the Impact of Transition Interventions for Adolescents with Chronic Illness on Transfer from Pediatric to Adult Healthcare by Chu et al (2015)
- Experiences and Outcomes of Transition from Pediatric to Adult Health Care Services for Young People with Congenital Heart Disease: A Systematic Review by Heery et al (2015)
- Uncharted Territory: Systematic Review of Providers' Roles, Understanding, and Views Pertaining to Health Care Transition by Nehring et al (2015)
- Transition to Adult Services for Young People with Mental Health Needs: A Systematic Review by Paul et al (2015)
- Measuring the "Triple Aim" in Transition Care: A Systematic Review by Prior et al (2014)
- Measures of Readiness to Transition to Adult Health Care for Youth with Chronic Physical Health Conditions: A Systematic Review and Recommendations for Measurement Testing and Development by Schwartz et al (2014)
- The Experiences and Impact of Transition from Child to Adult Healthcare Services for Young People with Type 1 Diabetes: A Systematic Review by Sheehan et al (2014)
HCT Articles Using the National Survey of Children's Health
- Developing and Psychometric Testing a Healthcare Transition Service Measure in the National Survey of Children's Health by Cheak-Zamora et al (2023)
- Measuring health care transition: Across time and into the future by Cheak-Zamora et al (2022)
- Readiness for transition to adult health care among US adolescents, 2016–2020 by Mulkey et al (2022)
- Trends and Disparities in Health Care Transition Preparation from 2016 to 2019: Findings from the US National Survey of Children's Health by Javalkar et al (2022)
- Associations Between Health Care Transition Preparation Among Youth in the US and Other Components of a Well-Functioning System of Services by Ilango et al (2021)
- Health Care Transition Services and Adaptive and Social Emotional Functioning of Youth with Autism Spectrum Disorder by Zeng et al (2021)
- Support for Transition from Adolescent to Adult Health Care Among Adolescents With and Without Mental, Behavioral, and Developmental Disorders — United States, 2016–2017 by Leeb et al (2020)
- Health Care Transition Planning Among Youth with ASD and Other Mental, Behavioral, and Developmental Disorders by Zablotsky et al (2020)
- Transition Planning Among US Youth With and Without Special Health Care Needs by Lebrun-Harris et al (2018)
Peer-Reviewed Articles that Implement the Six Core Elements
- Results of a healthcare transition learning collaborative for emerging adults with sickle cell disease: the ST3P-UP study transition quality improvement collaborative by Osunkwo et al (2024)
- Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: A quality improvement initiative by Dennis et al (2024)
- Perceptions of transitional care needs of adolescents and young adults with special healthcare needs and their parents by Anikputa & Horner (2023)
- Current approach to health care transition and integration into adult care for pediatric liver transplant recipients: A call for partnership by King et al (2023)
- Outcomes of a Structured Ambulatory Care Health Care Transition Approach in a Large Children's Hospital by Hickam et al (2023)
- Transition practices for survivors of childhood cancer: a report from the Children’s Oncology Group by Marchak et al (2023)
- Health Care Provider’s Perceptions of the Transition Between Pediatric to Adolescent and Adulthood: A Qualitative Inquiry by Coward and McDonald (2023)
- Sickle Cell Trevor Thompson Transition Project (ST3P-UP) protocol for managing care transitions: Methods and rationale by Osunkwo et al (2023)
- Improving Transition Care: A Transition Toolkit Implementation Project by Cox et al (2022)
- The current state of adult metabolic medicine in the United States: Results of a nationwide survey by Gold et al (2022)
- Care Transitions for Young Adults With Special Health Care Needs by Giammona et al (2022)
- Improved Health Care Transition for Young Adults with Developmental Disabilities referred from Designated Transition Clinics by Fremion et al (2022)
- Design and Evaluation of a Pediatric Resident Health Care Transition Curriculum by Kaushik & Niebuhr (2022)
- Transition to adult care for youth with medical complexity: Assessing needs and setting priorities for a health care improvement initiative by Li et al (2022)
- Feasibility and use of a transition process planning and communication tool among multiple subspecialties within a pediatric health system by Mulchan et al (2021)
- Adult Provider Perspectives on Transition and Transfer to Adult Care: A Multi-Specialty, Multi-Institutional Exploration by Gray et al (2021)
- Transition Navigator Intervention Improves Transition Readiness to Adult Care for Youth with Sickle Cell Disease by Manwani et al (2021)
- Improving Health Care Transitions for Children and Youth With Special Health Care Needs by Okumura et al (2021)
- Transitioning youth with autism spectrum disorders and other special health care needs into adult primary care: A provider survey by Ames et al (2021)
- Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home by Harris et al (2021)
- A pilot project: Improving the transition care process for neurosurgical adolescent patients with indwelling shunts to adult care by Johnson et al (2021)
- Improving Adolescent and Young Adult Engagement in the Process of Transitioning to Adult Care by Lestishock et al (2021)
- A Multidisciplinary Approach to Improving Transition Readiness in Pediatric Liver Transplant Recipients by Shapiro et al (2020)
- Youths' Experiences of Transition from Pediatric to Adult Care: An Updated Qualitative Metasynthesis by Varty et al (2020)
- Development and Implementation of Health Care Transition Resources for Youth with Autism Spectrum Disorders within a Primary Care Medical Home by Harris et al (2020)
- Health Care Transition in School-Based Health Centers: A Pilot Study by White et al (2020)
- Priorities and Outcomes for Youth-Adult Transitions in Hospital Care: Perspectives of Inpatient Clinical Leaders at US Children’s Hospitals by Coller et al (2020)
- Getting Ready for Adult Healthcare: Designing a Chatbot to Coach Adolescents with Special Health Needs Through the Transitions of Care by Beaudry et al (2019)
- A Multidisciplinary Transition Consult Service: Patient Referral Characteristics by Razon et al (2019)
- Evaluation of a Health Care Transition Improvement Process in Seven Large Health Care Systems by Jones et al (2019)
- Implementing a Structured Health Care Transition (HCT) Process for Sickle Cell Disease (SCD) Using Quality Improvement: Early Results of a SCD HCT Learning Collaborative by Osunkwo et al (2019)
- A Program of Transition to Adult Care for Sickle Cell Disease by Saulsberry et al (2019)
- Use of Transition Resources by Primary Care Providers for Youth With Intellectual and Developmental Disabilities by Dressler et al (2018)
- Perceptions of Health Care Transition Care Coordination in Patients with Chronic Illness by Lemke et al (2018)
- Transitioning from General Pediatric to Adult-Oriented Inpatient Care: National Survey of US Children’s Hospitals by Coller et al (2018)
- Transfer from Pediatric to Adult Endocrinology by Jones et al (2017)
- Using Quality Improvement in Resident Education to Improve Transition Care by Volertas & Rossi-Foulkes (2017)
- Incorporating the Six Core Elements of Health Care Transition Into a Medicaid Managed Care Plan: Lessons Learned From a Pilot Project by McManus et al (2015)
- Pediatric to Adult Transition: A Quality Improvement Model for Primary Care by McManus et al (2015)
HCT Recommendations and Organization Statements that Incorporate the Six Core Elements
- NAPNAP Position Statement on Supporting the Transition from Pediatric to Adult-Focused Health Care by Lestishock et al (2026)
- Health Care Transition for Adolescents and Young Adults with Pediatric-Onset Liver Disease and Transplantation: A Position Paper by the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition (2023)
- National Standards for Systems of Care for Children and Youth with Special Health Care Needs by The Association of Maternal & Child Health Programs (2017)
- National Care Coordination Standards for Children and Youth with Special Health Care Needs (CYSHCN) Implementation Guide by the National Academy for State Health Policy (2022)
- Advances in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: A Practical Approach to Transition Program Design: A Scientific Statement From the American Heart Assoc by John et al (2022)
- Falling Through the Cracks: The Current Gap in the Health Care Transition of Patients With Kawasaki Disease: A Scientific Statement From the American Heart Association by Dahdah et al (2021)
- SAHM Position Paper: Transition to Adulthood for Youth With Chronic Conditions and Special Health Care Needs by Society for Adolescent Health and Medicine (2020)
- Health Care Transition in Pediatric Neurosurgery: A Consensus Statement from the American Society of Pediatric Neurosurgeons by Rocque et al (2020)
- Recommendations for Successful Transition of Adolescents with Inflammatory Bowel Diseases to Adult Care by Shapiro et al (2020)
- 2018 AAP/AAFP/ACP Clinical Report: Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home by White et al (2018)
Commentaries/Editorials that Discuss the Six Core Elements
- Patient Safety in Transition from Pediatric to Adult-Centered Care by Hemmelgarn et al (2025)
- Health Care Gap Affects 20% of United States Population: Transition from Pediatric to Adult Health Care by McManus et al (2020)
- Implementing a Nationally Recognized Pediatric-to-Adult Transitional Care Approach in a Major Children's Hospital by Hickam et al (2018)
- Readying Youth and Young Adults for Transition to Adult Care During Preventive Care Visits: New Clinician Toolkit by White et al (2018)
- Transitioning Wisely: Improving the Connection from Pediatric to Adult Health Care by White & Ardoin (2015)
- The Promise and Potential of Adolescent Engagement in Health by McManus et al (2014)
