For Youth & Families

From Got Transition

Family Toolkit on Health Care Transition
Got Transition and its National Family Health Care Transition Advisory Group developed a toolkit for families to use during the transition from pediatric to adult health care. It includes a set of tools for youth and parents/caregivers to use to better prepare for the transition to adult care.

5 Steps to Prepare for Health Care Transition
These 5 easy steps can help youth, young adults, and their families prepare for transition to adult health care.

FloridaHATS Information Guides

• FloridaHATS Brochure (2018)
• 10 Steps to Successful Health Care Transition (English/Spanish) (English/Haitian Creole)
• Algorithm for YSHCN in Florida (decision-making tree for preparation for transition to an adult model of care)

Skill-Building Curricula and Videos

• My Health Care is classroom curriculum to improve health literacy, communication and self-advocacy skills for adolescents and adults with ID/DD from Florida Developmental Disabilities Council, Inc. (2015).
• Talking with Your Doctor (ICHP/CMS)
• See presentation “10 Steps to Taking Charge of Your Health Care Using the GLADD Approach” for students with developmental and intellectual disabilities at the USF Learning Academy, February, 2017.
• FYI Transition (from FDDC/USF; web-based learning on transition planning, career and post-secondary education planning, job development and support, health, and independent living)
• Health Conditions and the IEP Process (Waisman Center, University of Wisconsin)
• Advocating for Inclusive Sex Education for Students with Disabilities explains the elements of comprehensive sex education, and how parents and school faculty can advocate for inclusive and accessible sex education (from OnlineMSWPrograms.com) 
• Tip Sheet for Understanding the Health Care System, from FND (2015)

Readiness Checklists & Care Plans

• TRAQ, Transition Readiness Assessment Tool. TRAQ is a validated, patient-centered questionnaire that providers and families can use to assess youths’ ability to make appointments, to understand their medications and to develop other skills needed for transition to adult care. It is designed to be self-administered and it takes less than 5 minutes for youth to fill it out. The questionnaire can also be filled out by caretakers to get their perspective on their youth’s transition skills. Use of this instrument has the potential to improve transition assessment and support and improve health outcomes during healthcare transition for youth with special health care needs. TRAQ is available in an excel file to input, score and aggregate results, or in PDF. Visit the East Tennessee State University web site to download the instrument and learn more.
• Got Transition’ Sample Readiness Assessment for Youth/Young Adults. For all versions of the Six Core Elements assessment, including those for caregivers and Spanish speakers, visit www.GotTransition.org.
• STARx Program Tools, from the University of North Carolina-Chapel Hill
• Brief Transition Checklist (ages 12 – 18+)
• MyMedSchedule Plus app (free medication schedules and email/text reminders!)

Medical Summary Forms

• H.I. Doc  (portable summary from State of New York)
• My Health Passport (SickKids Good 2 Go Transition Program)

Youth Leadership

• Florida Youth Council
• YEAH! (Youth Advisory Council of New Hampshire)
• Advocating for Yourself in School (English)  (Spanish)  (Haitian Creole)  Tips for middle and high school students

Condition-Specific Materials

Autism Spectrum Disorders

• Making Health Care Transition Work for Youth with Autism (2019, webinar from National Institute of Mental Health and Got Transition)
• Autism Transition Resources (2013, Massachusetts General Hospital)
• Transition Training Tool Box  (AUCD’s Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities)
• Transition to Adult Health Care for Youth with Autism Spectrum Disorders (2012, Karen Kuhlthau, Massachusetts General Hospital)
• Autism Speaks: Transition Toolkit (Version 2.0, 2015, see www.autismspeaks.org)
• Individuals with autism often face extra challenges during procedures like physical examinations and blood draws due to communication deficits and sensory issues. Watch these brief presentations aimed at helping patients prepare for medical procedures. Print and share the video support handout from the Autism Research Institute.

Cornelia de Lange Syndrome

• Navigating Healthcare Transitions for Parents and Caregivers (2016, from Cornelia de Lange Syndrome Foundation)

Cystic Fibrosis

• Moving On: Cystic Fibrosis (University of Wisconsin Madison)

Diabetes

• National Diabetes Education Program (NDEP)
• Sample Section 504 Plan for Diabetes (from American Diabetes Association)

HIV/AIDS

• HIV Clinical Resource (NY State and Johns Hopkins University)

Intellectual/Developmental Disabilities  (ID/DD)

• Healthy Transitions (lesson plans, videos, and other tools for students with intellectual disabilities)
• Download or order hard copies of FDDC’s new publication, “Easing  Your Stress – Information for Caregivers of Individuals with Developmental  Disabilities.”
• Sexuality for persons with ID/DD:
  • Healthy Relationships, Sexuality and Disability Resource Guide 2013 (Massachusetts Department of Public Health)

Metabolic Conditions

• Children’s Hospital Boston Transition Toolkit

Spina Bifida

• Spina Bifida Overview for Teachers (Fact sheet from the Spina Bifida Association)

Sickle Cell Disease

• The Sickle Cell Transition Curriculum (SCDTC) is a new reference for healthcare practitioners, youth/young adults, and parents that includes practical age-specific guidelines for patients aged 12-25 with (from WISCH) SCD.Management of Sickle Cell Disease (Guidelines from the National Institutes of Health)

System-Specific Materials

Foster Care

• FAQ for Foster Youth Transitioning to Adulthood (2007)

Mental Health

• Transitions Research & Training Center (University of Massachusetts)

Oral Health

• Oral Health Florida
• Florida Donated Dental Services (DDS) provides dental care to elderly, disabled and medically at-risk clients. One must be unable to pay for dental care and need extensive treatment (more than routine care).  Visit here to learn more and to apply for services.
• Oral Health Sustainability Resource Center  (developed by Palm Beach State College)
  • Adolescents (13-20 years)
  • Adults (20-55 years)

Other Resources

• Transition QuickGuide: Take Charge of Planning and Managing Your Own Health and Career Goals (from Got Transition and ODEP)
• Family Network on Disabilities (multiple programs for families of children/students with disabilities)
• NAHIC (National Adolescent and Young Adult Health Information Center)