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Health Care Transition Resources

Listed below are resources related to health care transition and organized by topic. This is not an exhaustive list, but rather a selection of current external transition work relevant to a national audience. To submit new or existing resources, please contact info@GotTransition.org.

Six Core Elements of Health Care Transition

Listed in the table below are PDFs of the sample tools used in the Six Core Elements of Health Care Transition. Complete packages are available to download and customize for your practice or plan.

Transitioning Youth to
Adult Health Care Providers

(Pediatric, Family Medicine,
and Med-Peds Providers)

Transitioning to an
Adult Approach to Health Care
Without Changing Providers

(Family Medicine and Med-Peds Providers)

Integrating Young Adults
into Adult Health Care

(Internal Medicine, Family Medicine,
and Med-Peds Providers)
Complete Package
Summary of Six Core Elements
1) Transition Policy
2) Transition Tracking and Monitoring
3) Transition Readiness
4) Transition Planning
5) Transfer of Care
6) Transfer Completion
Measurement
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Adult Model of Care/Transfer to Adult Providers

  • Finding Adult Providers [PDF]
    Sample questions for youth and families to ask when looking for an adult health care provider, prepared by the Illinois Chapter of the American Academy of Pediatrics. Also available in Spanish.
  • Finding and Using Adult Health Care [PDF]
    Tips about how to look for and get to know a new doctor, prepared by the Kentucky Teach Project at the Shriners Hospital for Children.
  • Pediatric vs. Adult Care: How Do They Differ [PDF]
    A chart on the differences between pediatric and adult health care, prepared by the Cristine M. Trahms Program for Phenylketonuria at the University of Washington.
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Cultural Competence

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Developmental Disabilities and Transition

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Education and Transition

  • HEATH Resource Center
    Heath Resource Center is an online clearinghouse on postsecondary education for individuals with disabilities and official resource site for the National Youth Transitions Collaborative.
  • National Center on Secondary Education and Transition
    A national resource center operated by Minnesota’s Institute on Community Integration that provides technical assistance and information to improve success for students with disabilities in secondary and postsecondary education, as well as employment, independent living, and community participation.
  • National Secondary Transition Technical Assistance Center (NSTTAC)
    A national technical assistance center funded by the Department of Education’s Office of Special Education that provides technical assistance and information to improve the postsecondary academic and functional achievement of students with disabilities.
  • TransCen
    A non-profit organization dedicated to improving educational and employment outcomes for individuals with disabilities. Transcen collaborates with local, state, and national initiatives to expand opportunities for youth with disabilities.
  • Transition Planning for Youth With Special Health Care Needs (YSHCN) in Illinois Schools
    An article on health care transition planning in schools, prepared by transition experts at the Illinois Chapter of the American Academy of Pediatrics and the University of Illinois at Chicago’s Division of Specialized Care for Children, summarizes the results of a survey of Illinois high school representatives and offers recommendations for improving health care transition training for school nurses and the development of health goals in IEPs. 

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Employment and Transition

  • Transition QuickGuide: Take Charge of Planning and Managing Your Own Health and Career Goals [PDF]
    A QuickGuide with information and resources for youth and young adults (ages 12-30), including those with disabilities and chronic health conditions, on how to manage their health care in order to make their career goals a reality.

  • Center for Workforce Development
    A national resource center operated by the Institute for Educational Leadership that has helped private and public sector leaders promote career readiness and successful transitions to adulthood for all youth—with a special focus on youth with disabilities and disconnected youth—by increasing the capacity of and connections among all stakeholders in the workforce development system. The Center has also been involved in implementing innovative high-tech career-focused mentoring programs for all youth, including those with disabilities.

  • National Collaborative on Workforce and Disability for Youth
    A partnership of leaders in education, youth development, disability, employment, workforce development and family issues that is funded by the Department of Labor’s Office of Disability Employment Policy. NCWD/Youth offers a range of technical assistance services to promote success for all youth, including youth with disabilities, entering the world of work. The site houses numerous resources.

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Federal and State Transition Resources

  • Federal Transition Initiatives
    See a list of federally sponsored transition initiatives.
  • State Transition Initiatives
    Find state transition performance results and transition websites.
  • Association of Maternal & Child Health Programs (AMCHP)
    A national resource center, funded in part by the Maternal Child Health Bureau and the Center for Disease Control, whose members are directors of maternal and child health programs, children with special health care needs programs, and other public health offices. AMCHP disseminates best practices information, develops standards for systems of care (including transition from pediatric to adult care), and provides technical assistance.
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Foster Care and Transition

  • Foster Care Transition Toolkit [PDF]
    A toolkit developed by the U.S. Department of Education to help youth currently in foster care and young adults formerly in foster care to access the resources needed to successfully transition into adulthood and continue on to postsecondary education and meaningful careers.

  • Casey Family Programs
    Casey Family Programs, an operating foundation, focuses on safely reducing the need for foster care and building Communities of Hope for children and families across America.

  • FosterClub
    FosterClub is a national network of young people in foster care, including a young adult training and technical assistance network.

  • National Resource Center for Youth Development
    A national resource center housed at the University of Oklahoma and funded by HHS’ Children’s Bureau. Its aim is to build the capacity of states to provide high quality services to youth in out-of-home placements, former foster youth, and other youth in at-risk situations. It provides resource materials and technical assistance on a range of topics, including transition planning services.
  • Youth Transition Funders Group (YTFG)
    YTFG is a network of grantmakers whose mission is to keep youth, especially those in foster care, in the juveile justice system, and those who didn't finish high school, make a successful transition to adulthood by age 25.

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Guardianship and Decision-Making

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Health Insurance

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Health Professional Education

  • AAP Medical Home Modules for Pediatric Residency Education - Transition
    The American Academy of Pediatrics offers a new set of five educational modules to be incorporated into pediatric residency training programs. The fourth module -- Facilitating the Transition from Pediatric to Adult Care -- is based on the AAP/AAFP/ACP Clinical Report and the Six Core Elements.

  • Health Care Transition Training for Health Care Professionals
    This course is comprised of 10 sequential models, each lasting 15 minutes, developed by FloridaHATS. Continuing education credits are available for Florida physicians and other health professionals.

  • How to Engage Youth in Their Health Care
    This webinar provides examples of how pediatric providers can support youth to understand their role and responsibilities regarding managing their health care needs, especially as they transition from pediatric to adult care, prepared by the American Academy of Pediatrics.
  • Online CME and Maintenance of Certification (MOC) on Transition
    The Illinois Chapter of the American Academy of Pediatrics offers two separate curricula. The pediatric course provides 15 CME credits and 25 MOC Part IV credits. The adult medicine course offers 10 CME credits, 20 MOC credits for family medicine, and 20 MOC credits for internal medicine.
  • Online CME on Transition
    The HSC Health Care System offers a one-hour course on transition for one AMA physician credit that reviews the 2011 AAP/AAFP/ACP Clinical Report on Health Care Transition and offers quality improvement strategies for implementing the Six Core Elements of Health Care Transition. The course is available until January 2017.

  • Paving the Way to Adult Health Care
    This webinar provides a summary of the 2011 AAP/AAFP/ACP Clinical Report on Health Care Transition, prepared by Got Transition.
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Independent Living and Transition

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Medical Home

  • American Academy of Pediatrics’ Building your Medical Home Tool Kit
    AAP’s National Center for Medical Home Implementation is a national resource center funded by the Maternal and Child Health Bureau that provides information related to various educational and implementation initiatives related to medical home. The Medical Home Tool Kit is intended to prepare pediatricians for meeting NCQA medical home recognition requirements.
  • American Academy of Family Physicians PCMH Planner
    AAFP has several resources devoted to building a patient-centered medical home (PCMH), including FAQ’s about patient self-management, health coaching, motivational interviewing, and team models. The AAFP Medical Home Planner is designed to assist family physicians to assess their progress in PCMH transformation and guide them through a process of implementation.
  • American College of Physicians Medical Home Builder 2.0
    ACP has a variety of resources to assist internists in planning for a planning for a successful patient-centered medical home practice, including information on team-based care, costs and benefits, and demonstration projects. The Medical Home Builder offers new quality improvement modules and best-practice videos to assist internal medicine practices in practice improvement. It includes a new module on transition, developed by Patience White, MD, from Got Transition.
  • National Committee for Quality Assurance’s 2014 Medical Home Standards
    The 2014 NCQA Patient-Centered Medical Home Standards incorporate many elements that pertain to transition from pediatric to adult care.

  • National Center for Cultural Competence
    NCCC has developed a web –based feature that addresses the provision of culturally and linguistically competent care within the context of the Medical Home. Information describes “the evidence” for each component of the Medical Home related to culture and language and provides select related resources.
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Mental Health and Transition

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Payment and Transition

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Policy Recommendations

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Practice Resources for Providers

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Relationships, Sexuality, and Pregnancy Prevention

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Research

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Self-Care

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SSI Benefits and Transition

  • Social Security Administration (SSA)
    The federal agency that administers several of the largest Federal programs which provide assistance to people with disabilities, such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).

    • Supplemental Security Income (SSI)
      Explanations of the SSI  program. The link also describes "work incentives," or special rules that make it possible for people with disabilities receiving SSI to work and still receive monthly payments and Medicaid.

    • Community Work Incentive Coordinators
      Benefits Counselors whose goal is to better enable SSA’s beneficiaries with disabilities to make informed choices about work. They are familiar with Federal and State programs.

    • Continued Medicaid Eligibility [Section 1619(B)]
      One of the biggest concerns SSI beneficiaries have about going to work is the possibility of losing Medicaid coverage. Section 1619(b) of the Social Security Act provides some protection for these beneficiaries. This link provides qualifications for eligibility.

  • SSI and Age-18 Redetermination [PDF]
    This tip sheet from the Work Incentives Planning and Assistance National Training Center at Virginia Commonwealth University describes the Age-18 Redetermination process for SSI beneficiaries and provides strategies for managing the complex process.

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Youth and Family Organizations

  • Family Voices
    A national resource center with state affiliates, funded in part by the Maternal and Child Health Bureau, to promote family-centered care for all children and youth with special needs. Family Voices operates several programs.
    • Family-to-Family Health Information Centers
      These state-based centers, which are funded by the Maternal and Child Health Bureau, are family-staffed organizations that help families of children with special needs and their health providers. They provide assistance, including support and referral through direct telephone or email, training, informational resources, and advocacy.
    • Kids as Self Advocates
      KASA is a national grassroots project created by youth that seeks to spread information about young people and disabilities to peers, policymakers and health care professionals.
    • National Center for Family Professional Partnerships
      A project of Family Voices, the NCFPP works to facilitate the work of a community of family leaders through peer mentoring, training and technical assistance and to contribute to the evidence base of family/professional partnerships and family-centered care.
  • Family-to-Family Health Information Centers
    These state-based centers, which are funded by the Maternal and Child Health Bureau, are family-staffed organizations that help families of children with special needs and their health providers. They provide assistance, including support and referral through direct telephone or email, training, informational resources, and advocacy.
  • Know the Facts First
    A national public health awareness campaign developed by HHS's Office on Women's Health designed to provide teen girls, ages 13-19, with accurate information about sexually transmitted diseases (STDs) and STD prevention so that they can make informed decisions about sexual activity.

  • Military Parent Technical Assistance Center
    Funded by the Department of Education's Office of Special Education Programs (OSEP), the MPTAC assists PTIs and families with the specialized information and tools they need in navigating the military systems and supports and local and state special education systems.

  • National Federation of Families for Children's Mental Health
    The National Federation of Families for Children’s Mental Health is a national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. The FFCMH works to develop and implement policies, legislation, funding mechanisms, and service systems that utilize the strengths of families.
  • National Youth Transitions Center (NYTC)
    Developed by funding from the HSC Foundation, the NYTC is a collaborative learning community to benefit youth with disabilities. It sponsors the following:

    • Youth Transitions Collaborative
      A 45+ member collaborative sponsored by the NYTC that provides expertise on transition planning, programming, and advocacy related to career counselling, school-to-work readiness, work-based learning (mentoring and internships), personal development and leadership training, and family education and support.
    • HEATH Resource Center
      An online clearinghouse on postsecondary education for individuals with disabilities and official resource site for the NYTC based at George Washington University's Center for Education and Human Development.

  • The Native American Parent Technical Assistance Center
    Housed at EPICS (Education for Parents of Indian children with Special Needs), the NAPTAC assists PTIs and parents, in providing training, advocacy and supports to families of Native American youth with disabilities and special healthcare needs. 

  • Opening Doors for Children and Youth with Disabilities and Special Health Care Needs
    Opening Doors, a project funded by the National Institute on Disability Rehabilitation and Research, was started in Boston in 2006. The focus of this project is research and training on how to give youth with disabilities and special health care needs from underserved communities a better future.

  • Pacer Center
    The Pacer Center (Parent Advocacy Coalition for Educational Rights) expands opportunities and enhances the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

  • Parent Center Hub (National Center for Parent Information and Resources)
    Online hub for information and resources that parents, parent centers and professionals can use to navigate special education and transition.  Its resource repository offers an abundance of publications and links to organizations, programs and research that can be a huge help for youth and families.

    • Find Your Parent Center
      Interactive map containing contact information for each state's Parent Training and Information Center (PTI) or Community Parent Resource Center (CPRC). These centers provide families with a child who has a disability with information about their child's disability, about early intervention (for babies and toddlers), school services (for school-aged children), therapy, local policies, transportation, and much more.

  • Physician Parent Caregivers
    A voluntary organization of physician and parents to ensure access to quality health care for youth and young adults with chronic conditions and disabilities.
  • TASH
    An advocacy organization dedicated to advancing inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families and self-advocates.
  • Youth Action Council on Transition (YouthACT)
    A national project of the National Collaborative on Workforce and Disability for Youth to help youth with disabilities develop skills and knowledge in leadership and advocacy so they can speak up about what all youth need to be successful during transition to adulthood.

  • Youth Move National
    Youth-led national organization devoted to improving services and systems that support positive growth and development to bridge the gap for services in mental health, juvenile justice, education, and child welfare.
  • Young Invincibles (YI)
    YI is a national organization representing 18-34 year olds on health care higher education, jobs and economy, and entrepreneurship. 

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Youth and Family Transition Stories, Radio Episodes and Webinars/Videos

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Got Transition™ is a program of National Alliance Logo The National Alliance to Advance Adolescent Health supported by U39MC25729 HRSA/MCHB