Parents & Guardians

Select a different role:

Diagnosis/Early Childhood

Responsibilities: Identify goals & priorities for newly diagnosed child
Re-examine goals and priorities for self and for family as a whole

Challenges/Developmental tasks:

  • Adjust to diagnosis
  • Balance needs of siblings and family as a whole
  • Keep/develop vision for the future
  • Acknowledge one’s own needs outside of caring for child
  • Let go of guilt and blame
  • Make a life separate of child’s needs

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Childhood/Early Adolescence

Responsibilities: Guide and manage child’s care
Support child in cognitive, personal, and social development

Challenges/Developmental tasks:

  • Give up need to “do it all”
  • Maintain high expectations
  • Begin external shifts in care and support
  • Promote autonomy by helping teens:
    • Make some decisions
    • Be involved socially
    • Be more involved/ responsible for self-care
    • Be safe ? have an emergency plan
  • Inform and empower
  • Grow child to early adolescence

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Middle/Late Adolescence

Responsibilities:
Promote young adult’s self-efficacy

Challenges/Developmental tasks:

  • Defer some decision making to young adult
  • Support relationships with other adults
  • Support peer relationships
  • Work toward young adult driven, family guided care
  • Allow young adult to take risks and make their own mistakes (“Dignity of Risk”)
  • Let go of “my way is the right way”
  • Accommodate to normal adolescent development
    • Feeling not understood by parents
    • Seeking privacy
    • Engaging in risk taking behaviors/trying new and different things
  • Maintain life outside young adult

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Emerging Adulthood

Responsibilities:

Respect young adult’s autonomy

Challenges/Developmental tasks:

  • Provide input and support as requested:
    • To young adult
    • To significant others
  • Assist young adult in making good use of available resources and guidance
  • Focus on self and new activities

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Parent Resources

This section provides information for families with children and young adults in transition. The videos, information and resources you will find here were chosen to help you. You can assist your child or young adult as they move from childhood into adulthood. Transitions can be both challenging and exciting. The role of parents and caregivers is an important one. Often you can help provide your child or young adult with the information and tools they need. It is essential to support and assist them. You can help as they move into this new time of increased freedom, responsibility and learning. We hope you find this information helpful as your child or young adult goes through the transition process.

    • Health Care Transition. Jim’s StoryTransition is never easy, however this process is usually more difficult for young adults with special health care needs who have been receiving care from specialized pediatric treatment settings and providers. (10:00 minutes) Institute for Child Health Policy, University of Florida
    • What Does Health Have to Do with Transition? (PDF)This parent brief provides information on the benefits of and strategies for including health in the Individualized Education Program (IEP) process. (6 pages) National Center on Secondary Education and Transition, University of Minnesota
    • Baby’s First TestWebsite with information and resources about newborn screening.
    • PASS: Plan for Achieving Self Support.
      This award-winning video provides information about a work incentive program from the Social Security Administration for people with disabilities. (12:00 minutes) Institute for Child Health Policy, University of Florida
    • Let Children and Teens Speak for Themselves.Dr. Greninko explains why parents should let children and teens speak for themselves. (0:28 seconds)

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General Resources

    • Ticket to Work.“It’s fundamentally about the dignity of each human being?about recognizing that work is at the heart of the American Dream.” – President Bill Clinton, December 17, 1999. (14:00 minutes) Institute for Child Health Policy, University of Florida
    • Got Transition?Got Transition? is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult’s transition from pediatric to adult health care. This site serves as the basis for an information exchange about health care transition, particularly as pertaining to youth with special health care needs. Features transition tools and tips and other resources are available under each of the main categories of Youth, Family, Providers and States.

      National Health Care Transition Center

    • Transition Information and ResourcesPlanning for the transition from pediatric doctors to adult doctors, moving from school to work, and reaching your goals and dreams can be exciting and challenging. The materials included will help guide you as you experience life’s transitions.

      Division of Specialized Care for Children, University of Illinois ? Chicago

    • Transition to AdulthoodAs youth transition to adulthood, there are many things to consider, including health insurance work, school, transportation, housing, and much more. This section provides information for parents and providers so that they can support youth in their growing independence. This section also has information for youth, teens, and young adults to help them learn new skills to be as independent as possible.

      Medical Home Portal Project, Department of Pediatrics, University of Utah

    • Health Care TransitionsThe mission of the Health Care Transition Initiative at the University of Florida is to increase awareness of, gain knowledge about, and promote cooperative efforts to improve the process transitioning from child-centered (pediatric) to adult oriented health care.

      Institute for Child Health Policy, University of Florida

    • What has health got to do with transition? Everything!A resource for teens and young adults with special health care needs, chronic illness, physical or developmental disabilities. Includes information for teens/young adults and their families, schools, and health care providers.

      Adolescent Health Transitions Project, University of Washington

    • Graduating from Pediatric to Adult Health CareFeatures a tool box for health care providers, medical education, insurance & financing, service delivery & models of care, and includes information on advocacy and web links.

      Florida Health and Transition Services (HATS)

    • Healthy Transitions: Moving from Pediatric to Adult Health CareThis website is for youth with developmental disabilities ages 14-25 years, family caregivers, service coordinators, and health care providers. Teaches skills and provides tools for care coordination, keeping a health summary, and setting priorities during the transition process. It features video vignettes that demonstrate health transition skills and interactive tools that foster self-determination and collaboration.

      New York State Institute for Health Transition Training

    • Making the Move to Managing Your Own Personal Assistance ServicesA Toolkit for Youth with Disabilities Transitioning to Adulthood. This new guide assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS.

      National Collaborative on Workforce and Disability c/o Institute of Educational Leadership, Washington DC

    • Youth Transition ToolkitThis free online resource is designed to empower youth with disabilities (ages 12-28+) by providing information to assist in the successful transition to life after high school. It contains valuable information and resources on education, independent living, employment, finances, healthcare, and social and recreational opportunities. Each chapter also contains worksheets and tips for parents.

      The California Health Incentives Improvement Project (CHIIP)

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This Healthcare Transition resource is for informational purposes only and does not provide medical advice.
Acknowledgements: Model adapted from “Letting Grow and Letting Go: From Diagnosis to Adulthood” and the GLADD approach by John Reiss PhD, ICHP, University of Florida