Transition Tidbits

Health care transition (HCT) is defined as a structured process moving youth from pediatric to adult-centered care, with the goal of improving independence and continuity of care. The nationally recognized framework outlines transition as a planned, multi-step process beginning in early adolescence, typically around ages 12–14, to support the development of self-advocacy, health literacy, and independent decision-making skills.

• The national healthcare transition model ( Got Transition) recommends that transition planning begin in early adolescence (around age 12–14) and be implemented as a structured, multi-step process to build self-management and self-advocacy skills.
• The American Academy of Pediatrics recommends initiating healthcare transition planning in early adolescence and embedding it into routine care to support independence and decision-making.
  
  

National frameworks highlight the need for structured, coordinated approaches that intentionally connect school-based transition planning with pediatric and adult healthcare systems, including primary care, specialty providers, and community supports.

• The National Standards for Systems of Care for Children and Youth with Special Health Care Needs emphasize care coordination across health, education, and community systems as essential for successful transition to adulthood.
  
• Got Transition identifies cross-system collaboration between pediatric and adult providers, families, and community supports as a core element of effective transition planning.
  
• The U.S. Department of Education and health partners emphasize alignment of school-based transition planning with adult systems of care for students with disabilities to improve post-school outcomes.
  

Research and clinical guidance also consistently show that students who develop self-management skills—such as scheduling appointments, understanding medications, and communicating health needs—are more likely to experience successful transitions into adult-centered care.

• Research shows that youth who demonstrate stronger self-management skills (e.g., medication knowledge, appointment scheduling, symptom communication) experience smoother transitions into adult care and improved health outcomes.
  (Schwartz et al., 2013)
• Transition readiness assessments are designed to measure these skills and are directly linked to successful transfer to adult healthcare systems.
  
• The American Academy of Pediatrics identifies self-management and self-advocacy skill development as core predictors of successful healthcare transition outcomes.
  

The American Academy of Pediatrics and partner organizations recommend that:

• Health care transition should be a routine part of adolescent care
• Youth should be supported in developing self-management and self-advocacy skills
• Transition planning should be collaborative between youth, families, and provider

The Pennsylvania Health Law Project (PHLP) is a nonprofit legal services organization that works to ensure Pennsylvanians can access and maintain the healthcare coverage and services they need. For more than 30 years, PHLP has helped individuals and families navigate complex healthcare systems through free legal assistance, community education, and policy advocacy.

PHLP is particularly valuable for transition-age youth, families, and professionals because of its expertise in:

• Medicaid eligibility and enrollment
• Accessing Medicaid-funded services and supports
• Long-term services and supports (LTSS)
• Managed care and insurance appeals
• Healthcare rights and benefits navigation
• Disability-related healthcare access issues

Through its statewide helpline, PHLP provides free legal advice and representation to individuals experiencing problems with healthcare coverage, service denials, reductions in services, or other barriers to receiving medically necessary care. Beyond individual assistance, PHLP works to improve healthcare systems through policy analysis, advocacy, and training for families, healthcare providers, educators, advocates, and community organizations.

Why It Matters

For youth transitioning to adulthood, understanding healthcare benefits and navigating systems such as Medicaid can be overwhelming. PHLP helps families and professionals understand healthcare rights, access critical services, and advocate effectively when barriers arise. Their work supports successful transitions to adult healthcare, community living, employment, and independent adulthood by ensuring youth can access the healthcare supports they need.

Resources to Explore

• Medicaid eligibility and renewal guidance
• Healthcare coverage appeals and advocacy
• Community HealthChoices resources
• Long-term services and supports information
• Healthcare rights training and webinars
• Self-help materials and resource library

The Charting the LifeCourse Health Care Transition Toolkit is a free, person-centered resource designed to help youth and young adults with intellectual and developmental disabilities (ID/DD) successfully transition from pediatric to adult healthcare. Developed through a partnership among Family Voices, LifeCourse Nexus, SPAN, and Got Transition, the toolkit empowers youth to take increasing ownership of their health, healthcare decisions, and interactions with providers.

The toolkit is organized into six practical learning modules that guide youth and families through the transition process:

1. Understanding Health Care Transition – Learning what healthcare transition is and preparing for adult responsibilities.
2. Knowing About Your Health Care – Understanding diagnoses, healthcare needs, and providers.
3. Leading Day-to-Day Health Care Routines – Building skills related to medications, wellness, and healthy living.
4. Understanding Your Legal Rights – Exploring healthcare decision-making, privacy, and supported decision-making.
5. Leading Your Health Care Visits – Developing self-advocacy skills and learning to actively participate in appointments.
6. Planning for Moving to Adult Health Care – Preparing for adult providers, insurance, and support needs.

Each module includes:

• A Side-by-Side Guide for youth and supporters
• An EZ-Reader version with plain-language explanations
• Interactive tools and activities
• Tip sheets that support implementation and discussion

The toolkit includes practical resources such as a Medical Provider List, Medication List, Today's Health Care Visit Planner, My Health Care Support Needs, and My Health Care Support Team worksheets that can be used during transition planning meetings, IEP discussions, family conversations, and healthcare appointments.

Access the Toolkit

Charting the LifeCourse Health Care Transition Toolkit

Transitioning to adult healthcare is an important part of preparing youth for life beyond school. Rather than a single event, healthcare transition is a gradual process that builds skills, knowledge, and confidence over time. By intentionally supporting youth as they learn about their health, their rights, and their role in medical decision making, families and professionals can help ensure youth are ready to navigate adult healthcare systems successfully and safely.

Understanding the Healthcare Transition Timeline

As youth grow older, they move from pediatric systems, where families often lead care, to adult healthcare systems that expect youth to take a more active role. Learning when this transition happens and what changes are coming helps youth and families plan ahead, reduce uncertainty, and prepare for new expectations such as managing appointments, insurance, and communication with providers.

Youth Example:
“I understand when I will switch to adult healthcare and what I will need to do differently.”

Medical Self Knowledge

Medical self knowledge is the foundation of healthcare independence. Youth who understand their diagnosis, health needs, supports, allergies, and medical history are better able to communicate with providers and participate in decisions about their care. Building this knowledge over time helps youth feel more confident and reduces reliance on others to speak on their behalf.

Youth Example:
“I can explain my health needs and answer basic questions about my medical history.”

Rights in Healthcare: Consent and Confidentiality

As youth approach adulthood, their rights related to consent and confidentiality change. Learning about these rights helps youth understand when they can make medical decisions independently, what information is private, and how laws change at age 18. This knowledge supports self determination and encourages youth to take responsibility for their healthcare choices.

Youth Example:
“I know when I can consent to treatment and what medical information is private.”

Self Advocacy in Medical Settings

Self advocacy is a critical skill for navigating adult healthcare. Youth build self advocacy by learning how to choose providers, schedule appointments, prepare questions, and speak directly during visits. Practicing these skills helps youth feel respected, heard, and empowered in medical settings.

Youth Example:
“I practice asking questions and sharing my concerns at medical appointments.”

Independence with Medication

Managing medication is an important step toward adulthood. Youth benefit from learning the names and purposes of their medications, how and when to take them, and what to do if a dose is missed or a refill is needed. These skills support safety, consistency, and confidence in managing personal health needs.

Youth Example:
“I know what medications I take, why I take them, and how to take them safely.”

Preparing for Healthcare Emergencies

Emergencies can be stressful, especially when youth are unsure how to respond. Preparing youth to recognize emergencies, know who to contact, and communicate important medical information builds confidence and promotes safety. Planning ahead helps youth respond more effectively during unexpected health situations.

Youth Example:

“I know who to call and what information to share in a medical emergency.”

When youth are supported through each stage of healthcare transition, they are better equipped to take ownership of their health and advocate for their needs as adults. Building these skills early, understanding the system, knowing their health information, exercising their rights, managing medications, and preparing for emergencies, creates a strong foundation for lifelong health and independence. Healthcare transition is not just about medical care. It is about empowering youth to move forward with confidence.

Got Transition® is the federally funded National Resource Center on Health Care Transition and the leading source of evidence-based tools, resources, and technical assistance to support youth and young adults as they move from pediatric to adult healthcare systems. The organization helps youth, families, healthcare providers, educators, and community partners build the knowledge and skills needed for successful healthcare transition.

At the center of Got Transition's work is the Six Core Elements of Health Care Transition™, a nationally recognized framework that guides organizations in creating a structured approach to transition planning. These elements focus on preparing youth for increasing independence, assessing readiness, planning for adult healthcare needs, transferring care, and ensuring continuity of services.

Got Transition offers a wealth of free resources, including:

• Health care transition readiness assessments
• Youth and family planning guides
• Portable medical summary tools
• Transition timelines and checklists
• Resources on healthcare decision-making and supported decision-making
• Training materials and webinars for professionals and families

For educators and transition teams, these tools can complement transition assessment processes, support self-determination instruction, and help youth develop critical independent living and self-advocacy skills. The resources align closely with postsecondary goals related to independent living, community participation, employment, and overall wellness.

Through a nationwide network of affiliate organizations and Family-to-Family Health Information Centers, Family Voices helps families navigate healthcare, insurance, disability services, education systems, and transition planning. These family-led centers provide information, peer support, training, and advocacy opportunities in every state and territory.

For professionals working in secondary transition, Family Voices offers valuable resources focused on:

• Family engagement and leadership
• Youth self-advocacy
• Healthcare transition
• Health equity and culturally responsive practices
• Systems navigation and partnership building
• Policy and advocacy efforts affecting youth with disabilities and their families

One particularly valuable initiative is the Center for Transition to Adult Health Care for Youth with Disabilities, which Family Voices leads in partnership with organizations including Got Transition. This national effort develops youth-friendly resources that help young people with intellectual and developmental disabilities build the knowledge and skills needed to successfully move from pediatric to adult healthcare systems.

The National Alliance to Advance Adolescent Health is the nation's only nonprofit organization dedicated exclusively to improving healthcare systems, access, and insurance coverage for adolescents and young adults. Through education, policy analysis, technical assistance, research, and advocacy, the organization works to create long-term, systemic improvements that support healthy transitions into adulthood.

For professionals working in secondary transition, healthcare transition, and youth engagement, the National Alliance is particularly noteworthy because it operates Got Transition, the national resource center on health care transition. Through Got Transition, the organization has developed the widely used Six Core Elements of Health Care Transition™, helping healthcare providers, youth, families, and systems prepare for successful movement from pediatric to adult healthcare.

The Alliance's work focuses on four key areas:

• Adolescent-centered healthcare
• Access to mental and behavioral health services
• Health insurance coverage and affordability
• Effective transition from pediatric to adult healthcare

In addition to practical tools and resources, the organization publishes research, policy briefs, and implementation guides addressing issues such as healthcare transition, Medicaid and insurance access, youth engagement, quality improvement, and barriers faced by youth with disabilities as they move into adult systems. These resources can help educators, healthcare providers, state agencies, and families better understand the systems-level changes needed to improve outcomes for transition-age youth.

The Institute on Disabilities at Temple University is offering individualized healthy relationship and sexuality education for adults 18 and up with intellectual and developmental disabilities. Sessions are available in person or via Zoom. A trained sexuality educator will customize the lessons and learning experience to meet each client's needs. Topics covered may include online safety, healthy relationships, personal health, and more. All sessions are free of charge. Email iodhsp@temple.edu to learn more.

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Bridging Knowledge to Know-How: Empowering Pennsylvania Educators and Partners

August 4-7, 2026

Uniting Pennsylvania's educators, community partners, families, and youth to explore insights and tools that bridge knowledge and practical application.

• This conference will bring together Pennsylvania’s educators, community partners, families, and youth to explore the latest insights, strategies, and tools that bridge the gap between knowledge and practical application.
• Sessions will have a specific focus on autism, sensory disabilities, secondary transition, and students with complex instructional needs.
• Participants will gain tangible strategies to enhance teaching practices, drive student success, and adapt to the evolving demands of today’s classrooms.

Bridging Knowledge to Know-How: Empowering Educators and Partners offers conference attendees a broad, inclusive platform to learn from presenters as they share their expertise and innovative practices. This conference was built from the strengths of the HELIX, National Autism, and Secondary Transition conferences. We can’t wait to see you in August.

Location: The Lancaster County Convention Center Lancaster, PA

Download the flyer below for more information or visit the conference website.

Are you looking for transition events across PA?

The Pennsylvania Community on Transition is a group of various stakeholders from across Pennsylvania who work collaboratively to ensure appropriate transition outcomes for Pennsylvania youth and young adults.

The Pennsylvania Community on Transition is a state leadership team consisting of representative from: the State Departments of Education, Health, Labor and Industry, and Human Services; Various Serving Agencies, Young Adults, Parent Organizations, Advocates, Higher Education, and Employers.

The shared vision and common goals of the Pennsylvania Community on Transition is achieved when all PA youth and young adults with disabilities:

• Successfully transition to the role of productive and participating adult citizens
• Are empowered to recognize their talents, strengths, and voice
• Have equal access to resources that will promote their full participation in the communities of their choice.

Email: pasecondarytransition@gmail.com
Website: https://www.pasecondarytransition.com/
Phone: 4128266878
Twitter: @hmangiskuntz