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)
From the Institute for Child Health Policy at the University of Florida:
Transition 2 Go
A series of informational briefs with transition-related tips and resources for consumers and health care providers in Florida:
- T2G: Employment (English) (Spanish) (Haitian Creole)
- T2G: MedWaiver Programs (English) (Spanish) (Haitian Creole)
- T2G: Guardianship (English) (Spanish) (Haitian Creole)
- T2G: Social Security (English) (Spanish) (Haitian Creole)
Skill-Building Curricula and Videos
- Healthy Transitions Mobile App, from University of Delaware’s Center for Disabilities Studies, is designed to help young adults with special health care needs build skills for independence and health care self-management. It features videos that explain how to handle real life scenarios and an interactive game to reinforce the ideas presented in the videos. The videos are categorized into four sections; healthcare, insurance, healthy lifestyles and relationships. The app can be downloaded for free through iTunes and Google Play. For Google Play, click here. For iTunes, log in to your iTunes account and search for Healthy Transitions.
- Health Care Self-Management videos from JaxHATS and Healthy Transitions (short vignettes with step-by-step instructions for scheduling medical appointments, arranging for transportation, managing medications, and more)
- Videos produced by Nemours: Legal and Financial, After High School, Where to Live, and Medical. They are great resources for both consumers and providers!
- What’s Health Got To Do with Transition? (updated 2009, USF). A 40-hour classroom curriculum for high schools students in special education that promotes health literacy, self-determination, and health care management skill-building; includes a detailed Teacher’s Guide. Findings from the intervention are reported in this article in the Journal of Pediatric Psychology (2010), research poster (APHA conference, 2006), and comprehensive report (2005).
- 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).
- This is Health Care Transition: Part 1, Part 2, Part 3, Part 4 (streaming video/ICHP)
- 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)
- “Family Perspectives” Video Series for Families (includes several short modules from North Carolina’s ECAC on You Tube on the IEP process)
- Transition Planning Guide (from the Florida Department of Education/Project 10)
- Wisconsin HRTW Training Guide
- Staying Safe at Work (brochure about occupational health curriculum from University of CA, Berkeley)
- Sex, Etc. (an award-winning teen web site from Rutgers University)
- An Online Sex Ed Guide (a wealth of resources for students, parents, and teachers)
- 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
- TRAScore [© 2013 Mountain Area Health Education Center (MAHEC), Asheville, NC; 20-item
assessment with automatic score calculation formatted in Excel]
- Transition Timeline (from Shriner’s Hospitals and University of Washington)
- Brief Transition Checklist (ages 12 – 18+)
- Transition Health Care Check List: Transition to Adult Living (Pennsylvania Department of Health)
- My Medical has created an app that can help you keep track of test results, store medical histories, and monitor your health. Check it out at https://www.mymedicalapp.com/ and download it on your ipad, mac, iphone, or android device.
MyMedSchedule Plus app (free medication schedules and email/text reminders!)
Journey to Adulthood: A Transition Travel Guide (2012; a comprehensive 99-page guide that includes covers all aspects of transition, including checklists, forms, and plan templates; from Shriners Hospital for Children, Lexington)
Journey to Adulthood: Web Resources (accompanying list of web-based resources)
- Workbook for Ages 12-14 (English) (Spanish)
- Workbook for Ages 15-17 (English) (Spanish)
- Workbook for Ages 18+ (English) (Spanish)
Medical Summary Forms
- Health Care Transition Summary (2 page summary to carry at all times)
- H.I. Doc (portable summary from State of New York)
- My Health Passport (English) and Mi Pasaporte de Salud (Spanish); designed by Florida Center for Inclusive Communities, University of South Florida, for persons with developmental disabilities)
- Electronic Care Plan (University of Wisconsin)
- Electronic Transition Information Form (HealthyTransitionsNY)
- My Health Passport (SickKids Good 2 Go Transition Program)
- Florida Youth Council
- National Youth Leadership Network
- YEAH! (Youth Advisory Council of New Hampshire)
- Self Advocacy: Find the Captain in You! (video from the Pacer Center)
- KASA (Kids -and young adults – As Self Advocates)
- Advocating for Yourself in School (English) (Spanish) (Haitian Creole) Tips for middle and high school students
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.
- Cerebral Palsy Grown Up (Glew & Bennett, 2011)
Cornelia de Lange Syndrome
- Navigating Healthcare Transitions for Parents and Caregivers (2016, from Cornelia de Lange Syndrome Foundation)
- The Adults Years: Pediatric to Adult Medical Care (presentation from CdLS Foundation Conference, Orlando, 2016)
- Moving On: Cystic Fibrosis (University of Wisconsin Madison)
- National Diabetes Education Program (NDEP)
- Best Practices Guidelines (A Diabetes Transition Program in Queensland)
- Keys to Independence: Diabetes (University of Wisconsin Madison)
- Sample Section 504 Plan for Diabetes (from American Diabetes Association)
- HIV Clinical Resource (NY State and Johns Hopkins University)
- Moving on Positively: A Guide for Youth, Caregivers and Providers (2012, from MassCARE and Next Step, www.nextstepnet.org)
Intellectual/Developmental Disabilities (ID/DD)
- Healthy Transitions (lesson plans, videos, and other tools for students with intellectual disabilities)
- My Health Care is a training program developed by FDDC to improve health literacy, communication and self-advocacy skills among adolescents and adults with ID/DD. Read about the program here, and download materials for learners and instructors here. Evaluation study results are here.
- Recent presentations include Health Literacy, Communication and Self-Management: Critical Pathways to Adulthood (2014 Health & Wellness Symposium, USF CARD) and 10 Steps to Taking Charge of Your Health Care (2014 Hartwick Symposium), with accompanying self-management electronic resource list.
“The Transition to Adulthood for Youth with I/DD: A Review of Research, Policy and Next Steps,” a policy brief from Samantha Crane at the Autistic Self Advocacy Network (July 2013)
My Health, My Choice, My Responsibility (training program for adults with ID/DD from the Westchester Institute for Human Development)
- Healthy Athletes Free Medical Screening from Florida Special Olympics. Visit the Special Olympics web site to learn about the great programs and services offered to persons with intellectual disabilities ages 8 and older.
- Agency for Persons with Disabilities Resource Directory (Search national, state and local resources for persons with developmental disabilities)
- WaiverProvider.Com (Search for Medicaid Waiver services and providers)
- Factsheets (5) on Good Health and Hygiene; Diabetes; Osteoporosis; Cancer; and Cancer Treatment. These materials from the Florida Center for Inclusive Communities can be used to help raise awareness about serious health conditions that become more common with increasing age; usual treatments and prevention tips are also highlighted. Dr. Liz Perkins (email@example.com) would welcome any feedback or comments on them.
- 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 Bodies Toolkit for Girls, Healthy Bodies Toolkit for Boys (Vanderbilt Kennedy Center)
- Healthy Relationships, Sexuality and Disability Resource Guide 2013 (Massachusetts Department of Public Health)
- Sexuality Across the Lifespan (2005 Parents Guide from FDDC, University of Albany)
- From the Elizabeth M. Boggs Center on Developmental Disabilities:
- JA Transition Toolkit (Arthritis Foundation). Offers an interactive health care skills assessment and customized Transition Toolkit. The resource library provides information about communicating with your doctors, organizing your health care, going to college with arthritis, managing stress, eating well, and more.
- Presentations from the National Juvenile Arthritis Conference, July 23-26, 2015, Orlando, FL:
- Children’s Hospital Boston Transition Toolkit
- PKU Toolkit (from the New England Consortium of Metabolic Programs)
- Rocking & Rolling: Neuromuscular Disease (University of Wisconsin Madison)
- Guide for Students with Muscular Dystrophy
- Moving On: Pulmonary Disease (University of Wisconsin Madison)
- Spina Bifida Preparations (Spina Bifida Association)
- Spina Bifida Overview for Teachers (Fact sheet from the Spina Bifida Association)
Sickle Cell Disease
- SCD Adolescent Patient and Family Education, developed for the Centers for Medicare and Medicaid Innovations CHECK project, copyright University of Illinois Board of Trustees.
- 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)
Children’s Medical Services
- CMS Transition Policy Transition policies and procedures for all CMS staff (Revised 7/19/16)\
- Florida Maternal and Child Health Services Block Grant (2019), see www.floridahealth.gov/programs-and-services/womens-health/pregnancy/_documents/mch-block-grant-fy2019.pdf
- Presentation on Florida Title V Needs Assessment (from April 2015 webinar)
- Children’s Medical Services Specialty Care Plan (2015)
- Transition Worksheet
- FAQ for Foster Youth Transitioning to Adulthood (2007)
- Florida’s Children First (advocacy organization for at-risk children and youth)
- It’s My Life (from Casey Family Programs)
- Addressing the Health Needs of Adolescents Transitioning Out of Foster Care (Lopez & Allen, Pediatric Nursing, 2007)
- Independence for Foster Youth (Washington state web site for youth)
- Casey Life Skills: Youth Resources
- See flyer for CLEAR, a new statewide mental health referral and access line, 1-800-945-1355
- www.StrengthOfUs.org (a web site uniquely designed by and for transition-age youth and young adults with MH conditions – lots of great information and networking opportunities!)
- National Network on Youth Transition for Behavioral Health (University of South Florida)
- Transitions Research & Training Center (University of Massachusetts)
- Oral Health Training for Caregivers (2014, from FDDC). This webinar/video is for anyone who provides personal care to an individual with a developmental disability, demonstrating how to perform oral hygiene techniques such as positioning, brushing and flossing.
- Oral Health Florida
- Project: Dentists Care (Florida Dental Health Foundation 2010) Dental access resource guide for underserved Floridians.
- 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)
- #JustAdulting (2015, resources for young adults from the Florida Bar Association)
- Tip Sheet for Understanding the Health Care System, from FND (2015)
- Transition QuickGuide: Take Charge of Planning and Managing Your Own Health and Career Goals (from Got Transition and ODEP)
- Apps to Increase Independence (2014 PPT presentation from Florida Alliance for Assistive Services and Technology)
- Family Network on Disabilities (multiple programs for families of children/students with disabilities)
- Resources for College Students from BestColleges.com, including information on disability, mental health, academics and college life
- Special Needs Facts Sheets from the University of Washington School of Dentistry provide guidelines for physicians, dentists and caregivers concerning 14 conditions.
- Got A Plan? (FAAST’s Emergency Preparedness Self-Help List)
- Family Manual on Transition to Employment and Adults Services for Youth with Developmental Disabilities (Illinois)
- What’s Health Got To Do with Transition? (English) (Spanish) A guide for Hillsborough County, FL, from the University of South Florida, Tampa (2005)
- NAHIC (National Adolescent and Young Adult Health Information Center)