Many states face challenges in supporting and funding the transition of youth with special health care needs (YSHCN) from pediatric to adult health care. A provision of the Affordable Care Act of 2010 alleviated some of the burden of funding health care services for youth in transition by allowing parents with private health insurance that offers family and/or dependent coverage to enroll their young adult children in their plan until they turn 26. State Title V programs and Medicaid agencies often play an important role in connecting YSHCN to information, services, and other resources during the transition period to ensure continued access to, and financing for, needed care.
Title V Providing Expertise on Transition
Several state Title V agencies, including those in Maryland, New York, and Illinois, offer technical assistance to the state’s Medicaid department regarding healthcare transition for CYSHCN.
In New York, Title V supports three Regional Support Centers (RSCs) hosted at HRSA-designated University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs). These RSCs facilitate professional development and information sharing between Local Health Department programs in their region related to transition, including a webinar on Got Transition’s Six Core Elements of Health Care Transition.
Title V Supporting Efforts to Develop Innovative Financing Strategies for Transition
Florida’s CYSHCN program collaborates with the state’s Medicaid Managed Care plan for CYSHCN and Got Transition to pilot a value-based payment system to increase the percentage of 18- to 21-year-old members who transition from a pediatric provider to an adult care provider. Elements of this collaboration may include coordinated exchange of current medical information, development of a plan of care, communication between pediatric and adult providers, and facilitated integration into adult care consistent with Got Transition’s Six Core Elements of Health Care Transition.
In March 2023, Idaho’s application for an AMCHP Innovation Replication Project focusing on Got Transition’s Six Core Elements of Health Care Transition in Medicaid Managed Care, led by the state’s CYSHCN Director, was approved. This project will focus on incorporating the Six Core Elements of Health Care Transition into a Medicaid managed care plan by customizing and integrating transition core elements within a Medicaid plan’s existing care management processes. This funding opportunity will promote multidisciplinary work between the Divisions of Public Health, Medicaid, and Family & Community Services; as well as Idaho Parents Unlimited (IPUL); and other health systems and community partners. This project will identify and address health inequities and social determinants of health faced by youth and families with special health care needs to ensure successful health care transition. In addition, this project will assess for, identify, and offer additional referrals and resources for any other barriers that prevent successful health care transition for youth and families with special health care needs.
DC Title V funds the National Alliance to Advance Adolescent Health (NA), which, in 2019, produced a report titled, “Medicaid Opportunities for Supporting Innovations in Transition from Pediatric to Adult Care for DC Youth and Yong Adults: A Discussion Piece.” The report described six policy opportunities for sustaining health care transition improvements related to: 1) a multi-sector population health initiative, 2) managed care contract language, 3) recognition of HCT-related codes, 4) Early and Periodic Screening, Diagnostic and Treatment (EPSDT), 5) value-based payment, and 6) health home programs. NA reached approximately 432 health professionals, agency officials, youth and families through their various transition quality improvement, education and training, interagency, and policy/systems-building efforts.
Ensuring Continuity of Insurance
During transition planning, Georgia’s Title V agency encourages families to apply as early as possible for the state’s Home and Community Based Waivers for adults. There is often a waiting list for the waiver, but families can access some support services while on the wait list. Applying early helps to avoid gaps in coverage.
Louisiana’s Title V Family Resource Center provides youth transition resources to young adults and their families, including support with maintaining health insurance coverage into adulthood. Transition support is also provided to youth attending Title V funded CYSHCN clinics.
Missouri’s CYSHCN program has a cooperative agreement with the state’s Medicaid agency that allows them to authorize enrollment in the Medically Fragile Adult Waiver. To be eligible for this waiver, individuals must have been eligible for private duty nursing under the state’s Healthy Children and Youth Program prior to turning 21. The adult waiver allows continued access to personal care, nursing care, registered nurse visits, and specialized medical supplies.
Increasing Provider Transition Capacity/Training Pediatric Providers on Transition
Wyoming’s Children’s Special Health Program and Youth and Young Adult Health Program partnered to develop a training on adolescent transition for public health nurses and tribal MCH nurses who provide care coordination services to CYSHCN. This training, developed using Got Transition resources, reviewed definitions of health care transition, health care transition data, best practices, and how to implement newly developed tools and resources. Now, all new public health nurses complete the recorded training as part of their onboarding process.
A member of Michigan’s Title V staff functions as a Transition Specialist who works with the Children’s Multidisciplinary Specialty Clinics in the state.
The Montana CYSHCN program partnered with Billings Clinic and the University of Montana Rural Institute for Inclusive Communities (UMRI) to implement a pilot study integrating the Six Core Elements of Health Care Transition into the workflow at Billings Clinic in both pediatric and adult offices. After the pilot and evaluation are complete, Montana’s Transition Improvement Group plans to publish findings and work with the Billings Clinic executive staff to expand this initiative across the health system.
The Virginia Title V agency worked with the University of Virginia to develop training modules for providers and families to promote the importance of a patient centered medical home and transition from pediatric to adult health care. The Virginia Title V program covers the cost of the modules so anyone may take them, regardless of whether they live in the state.
After losing a long-time contract partner that developed the Florida Health and Transition Services (FloridaHATS), Florida Title V worked to bring the transition program in-house and maintain the FloridaHATS website resources. The website includes a health care transition “tool box,” with resources for youth, families, and providers on topics such as decision-making and guardianship, health insurance, advocacy, juvenile justice, and secondary and post-secondary education. In addition, Title V and Florida’s MCH partners have developed a provider-focused education module on transition.
New York’s Title V agency provides grant funding and technical assistance to hemoglobinopathy centers to support successful transition to adult services for young adults with sickle cell disease. Transition topics supported by this funding and assistance include transition policy, tracking and monitoring, transition readiness and planning, transfer of care, and transition feedback and completion.
Oregon’s CaCoon program, a statewide public health program that provides community-based care coordination for CYSHCN through nurse home visiting and shared care planning, encourages the public health workforce to target services to transition-aged youth. The Oregon CYSHCN program has also focused technical assistance on building capacity for the public health workforce to support youth and families with the transition from pediatric to adult health care.
In collaboration with Got Transition, the Idaho CYSHCN program developed two sessions of an Extension for Community Health Outcomes (ECHO) series focused on healthcare transition. One of these sessions was led by Dr. Patience White, Got Transition’s Co-Project Director, and provided best practice recommendations, assessment tools, and resources for primary care providers to support CYSHCN and their families in their transition to adult health care services. The second session provided a parent perspective in navigating the hurdles of transition and was supported by IPUL and the Idaho Parent Network for Children’s Mental Health.
Developing Adult Provider Capacity to Support Transition
Oregon’s CYSHCN program has worked with four adult provider practices to provide professional development activities related to transition using Got Transition’s resources.
DC’s Title V agency has collaborated with Medicaid to increase reimbursement for YSHCN adult providers who accept public insurance.
Partnerships with State Agencies and Community-Based Organizations
Alabama’s Children’s Rehabilitation Service department works closely with the Vocational Rehabilitation Service (VRS) to support transition to adulthood. In addition to educational and employment support, VRS provides benefits counseling to help SSDI/SSI beneficiaries make informed decisions regarding how employment may affect their cash and health care benefits.
Some state Title V agencies work with Transition Communities of Practice (COP) led by their state’s Department of Education. New Hampshire’s Title V agency is involved in COP meetings, provides financial sponsorship, and collaborates on their yearly summit. The Arizona Transition Leadership Team COP facilitates collaboration between 25 state and community organizations along with two Young Adult Advisors.
DC’s Title V agency partners with School Based Health Centers (SBHCs) to provide transition education to patients who visit the centers. They are also considering expanding the work done in the SBHCs to the school nursing program to increase the number of schools providing transition education to students prior to graduating from high school.
Starting in 2018, New York’s Title V program has funded three contracts for Coordinating Care and Supporting Transition for Children, Adolescents and Young Adults with Sickle Cell Disease. Each of the grantees employs a Transition Navigator who builds a relationship with the individuals, their schools, their families, their doctors, and the interdisciplinary team and uses Got Transition resources to improve transition outcomes.
Providing Support to Adolescents and Families
In Arizona, the organization Diverse Ability Incorporated hosts the Arizona Youth Leadership Forum for Teens and Young Adults Who Have Disabilities (AZYLF). During this multi-day conference, up to 25 youth participate in sessions related to self-discovery, leadership, and advocacy. The Arizona Title V agency financially supports the program and provides Health Care Organizers to participants which are used in trainings on health care self-management.
Oregon Title V’s Family Involvement Program Manager collaborated with Oregon Health and Science University’s Lifespan Transition Clinic to design a transition toolkit for families to be used around an adolescent’s 16th or 17th year to help them find adult medical specialists. This workbook builds on materials from Oregon’s Family-to-Family Health Information Center, Got Transition, and the University of South Florida.
The Wyoming CYSHCN program sends regular reminders to adolescents age 11 to 18 who are enrolled in the Children’s Special Health program to attend their yearly well visit. These reminders include an FAQ sheet on adolescent and young adult well visits and a reminder to complete the transition readiness assessment.
The Virginia Care Connection for Children (CCC) program at the Children’s Hospital of the King’s Daughters developed a transition tool that is now used by all CCC centers in the state. The tool, which is based on Got Transition resources, is updated regularly based on feedback from the CCC centers. Topics included in the tool are: education, vocation, and employment; health and wellness; mobility, transportation, and recreation; and legal, insurance, adult benefits, and housing.
Utah’s CSHCN staff attend local and regional school district, agency, and transition fairs to promote coordination services and obtain referrals from families in need of assistance with their youth of transition age. After families are referred, the CSHCN program provides them with care coordination based on Got Transition’s Six Core Elements of Health Care Transition and education on Supplemental Security Income, Medicaid, ACA insurance provisions, and a list of adult providers who may be able to help facilitate the transition process.
Indiana’s Title V program provides funding to the Center for Youth and Adults with Conditions of Childhood (CYACC), which assists youth between the ages of 11 and 22 with health care transition. The clinic helps youth learn how to be active participants in their care, establish sustainable insurance coverage, determine the appropriate support people for medical decision-making, and obtain the appropriate government support services.
In Idaho, Title V Block Grant funds are used to continue to sponsor the Tools for Life Fair. This event is led by the Idaho Assistive Technology Project located at the Center on Disabilities and Human Development as part of the University of Idaho’s College of Education. Tools for Life is for transitioning youth with disabilities and all who support them. Attendees include educators, special educators, therapists, counselors, service providers, job developers, other rehabilitation specialists, and most importantly high school students with disabilities and their families. Each year, the Tools for Life Fair is held in a different city in Idaho to make it more accessible to students and families across the state.