If you provide health-related services to young adults with chronic health conditions or disabilities, please be sure you are listed in our Health Services Directory for Young Adults. Visit Submission Instructions to add or update your program information.
- Updated Six Core Elements of Health Care Transition 2.0: Comprehensive tool packages are available for three transition processes: 1) transitioning youth to adult health care providers, 2) transitioning youth to an adult approach to health care without changing providers and 3) integrating youth into adult health care. These packages include sample policies,registries, transition readiness/self-care assessments, condition fact sheets, medical summary and emergency care plans, transfer letters and checklists, young adult orientation material, care plans, feedback surveys and measurement approaches. Download the Six Core Elements and the supporting tool packages on the Got Transition web site here.
- Condition-Specific Tools from the American College of Physicians are now available for the following subspecialties: general internal medicine (intellectual/developmental disabilities and physical disabilities), cardiology, endocrinology, gastroenterology, hematology, nephrology, and rheumatology. The toolkit includes transition readiness assessments, self-care assessments, and medical summaries customized from Got Transition’s Six Core Elements.
- Pathways to preparation, planning and transfer:
- The 2011 Clinical Report on Health Care Transitions from the AAP/ACP/AAFP was published in the July 2011 issue of Pediatrics and is available for download here.
- See our Health Care Transition Training for Health Care Professionals
- Incorporating Transition into Epic Electronic Health Record Software: A Survey of Expert Users(January 2015 from Got Transition)
- Coding and Reimbursement Tip Sheet. Got Transition and the American Academy of Pediatrics developed a transition payment tip sheet to support the delivery of recommended transition services in pediatric and adult primary and specialty care settings. It provides a summary of alternative payment methodologies and comprehensive listing of transition-related CPT codes and corresponding Medicare fees, effective as of 2017.
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)
- 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!
- This is Health Care Transition: Part 1, Part 2, Part 3, Part 4 (streaming video/ICHP)
- Talking with Your Doctor (ICHP/CMS)
Transition Readiness Assessments, Checklists & Care Plans
- TRAQ, Transition Readiness Assessment Tool from JaxHATS. 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 JaxHATS web site to learn more.
- TRAScore [© 2013 Mountain Area Health Education Center (MAHEC), Asheville, NC; 20-item assessment with automatic score calculation]
- Brief Transition Checklist (ages 12 – 18+)
Transition Timeline (from Shriner’s Hospitals and University of Washington)
Teen Transition Checklist (from AAP’s Illinois Chapter)
Transition Health Care Check List: Transition to Adult Living (Pennsylvania Department of Health)
Workbooks from the Institute of Child Health Policy at University of Florida and CMS:
- Workbook for Ages 12-14 (English) (Spanish)
- Workbook for Ages 15-17 (English) (Spanish)
- Workbook for Ages 18+ (English) (Spanish)
Guidelines for Adolescent Preventive Services (GAPS; from the American Medical Association):
- Modified GAPS for Younger Adolescents (English) (Spanish) For ages 11-14; modified to include 5 transition questions.
- Modified GAPS for Older Adolescents (English) (Spanish) For ages 15+; modified to include 5 transition questions.
Examples of anticipatory guidance for adolescent and young adult patients (adapted from AAP’s Bright Futures guidelines by University of South Florida to include transition activities)
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)
Condition-Specific Checklists & Care Plans
Autism Spectrum Disorders
- 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
- Cerebral Palsy Grown Up (Glew & Bennett, 2011)
Cornelia de Lange Syndrome
- Navigating Healthcare Transitions for Professionals (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)
- NDEP Transitions (National Diabetes Education Program web site)
- Keys to Independence: Diabetes (University of Wisconsin Madison)
- Sample Section 504 Plan for Diabetes (from American Diabetes Association)
- Transitional Care for the Young Adult with Down Syndrome (2012): The first in a series of didactic modules developed by Dr. John McCormick at the University of South Florida, Med-Peds Residency Program. If you are interested in collaborating with Dr. McCormick in designing additional modules about the care of young adults with other childhood onset medical conditions, please contact him at firstname.lastname@example.org.
- Down Syndrome Lifespan Health Care
- Down Syndrome Adult Health Care
- Moving on Positively: A Guide for Youth, Caregivers and Providers (2012, from MassCARE and Next Step, www.nextstepnet.org)
- HIV Clinical Resource (NY State and Johns Hopkins University)
Care of the Hormone Deficient Patient: Transition from Adolescence to Adulthood (CME Activity Program from The
Intellectual Disability/Developmental Disability (ID/DD)
- Integrating Young Adults with Intellectual and Developmental Disabilities into Your Practice: Tips for Adult Health Care Providers, from Got Transition (2015)
- Transition to Adult Care for Individuals with ID/DD is a one-hour continuing education module in the webinar series, Physician Education in Developmental Disabilities. The 12 credit-hour series is available at http://aadmd.org/page/pedd-webinar-series.
- Healthy Transitions (New York State Institute for Health Transition Training)
- Health Care for Adults with Intellectual and Developmental Disabilities: Toolkit for Primary Care Providers (2014, from Vanderbilt Kennedy Center and Surrey Place Centre)
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 Literacy, Communication and Self-Management: Critical Pathways to Adulthood (presentation at 2014 Health & Wellness Symposium, USF CARD)
“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 (Westchester Institute for Human Development)
- 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.
- My Health Care is a classroom curriculum developed by FDDC and USF 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.
- 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)
- Metabolic Condition Basics (Children’s Hospital Boston)
- Rocking & Rolling: Neuromuscular Disease (University of Wisconsin Madison)
- Moving On: Pulmonary Disease (University of Wisconsin Madison)
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 reference for healthcare practitioners, youth/young adults, and parents that includes practical age-specific guidelines for patients aged 12-25 with (from WISCH)
- Management of Sickle Cell Disease (Guidelines from the National Institutes of Health)
- Sickle Cell Disease Across the Lifespan
Solid Organ Transplantation
- Solid Organ Transplantation in Childhood: Transitioning to Adult Care (LaRosa et al, Pediatrics 2011)
- Spina Bifida Overview for Teachers (Fact sheet from the Spina Bifida Association)
Service System Materials
Children’s Medical Services
- CMS Transition Policy Transition procedures and protocol for all CMS staff (Revised 7/19/16)
- Florida Maternal and Child Health Services Block Grant (for 2016; see www.floridahealth.gov/programs-and-services/womens-health/pregnancy/mch-block-grant.html)
- 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
- Becoming An Adult: Challenges for those with Mental Health Conditions (Transitions RTC, 2011)
- 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)
- Health Care Transition for Emerging Adults with Chronic Health Conditions and Disabilities (Reiss, Pediatric Annals, 2012)
- Parag Shah (Children’s Memorial Hospital, Chicago) and colleagues have identified health care transition articles through Medline. This list of 600+ citations is updated each month and is available by going to http://www.ncbi.nlm.nih.gov/sites/
- Transition From Pediatric to Adult Care: Internists’ Perspectives (Pediatrics, 2009)
- Inpatient Experience in Children’s Hospitals (Pediatrics, 2011)
- Growing Up With a Chronic Illness: Social Success, Educational/Vocational (Journal of Adolescent Health, 2011)
MyMedSchedule.com (free medication schedules and email/text reminders!)
- NAHIC (National Adolescent and Young Adult Health Information Center)
- Oral Health for Persons with Disabilities (an online course from the University of Florida)
- Apps to Increase Independence (2014 PPT presentation from Florida Alliance for Assistive Services and Technology)
- CHAT Project (from North Carolina’s Mountain Area Health Education Center)
- Transitional Care References
- Healthcare Access for Persons with Disabilities: Part I (1 contact hour Florida AHEC)
- Healthcare Access for Persons with Disabilities: Part II (1 contact hour through CDC)
- Access to Care for Persons with Mobility Disabilities
- Disability Curriculum at USF Medical School
- Best Practices for Youth Participation in Team Planning
- AAMC: Matheny Medical Education
- Special Olympics provides Free Medical Screening for athletes with intellectual disabilities ages 8 and older, and is looking for licensed medical and dental professionals to assist in their Healthy Athletes Program. Visit here for more information on how to volunteer!
- Special Needs Facts Sheets from the University of Washington School of Dentistry provide guidelines for physicians, dentists and caregivers concerning 14 conditions.
- Access to Health Care and Health Behaviors Among Young Adults With and Without Disability in Florida: A Report from the Florida Behavioral Risk Factor Surveillance System 2007 (January 2010)