Transition Issues

Transitioning from one stage to the next across the life span is a challenge for children and youth with special health care needs (CYSHCN), their families, and their providers. Each stage has different issues to address, but the common challenge is finding new professionals and organizations that might be able to provide needed services during and after the transition. For example, parents of young children often have a difficult time finding services once they age out of Early Intervention (Part C) and before they enter Kindergarten. Similarly, teenagers and young adults have a difficult time finding internal medicine or family practice physicians as they become too old to continue seeing their pediatricians. This page will provide a brief overview of various transitions and link to more detailed information in the For Parents & Families section.

Birth to Three

Well-child visits provide the primary care provider with the opportunity to see infants and toddlers, Early Services, 0-5 Years, on a frequent basis and catch early developmental problems. The use of standardized Developmental Screening tools and referrals to Early Intervention Programs when infants do not pass screenings can help identify developmental delays and initiate needed services. If the infant does not qualify for Early Intervention Program services, the Medical Home will play a larger role in helping families minimize delays and find Additional Early Services in the community.

School Transitions

As children begin to access services from the local school system, the Medical Home will play in important role as the single, consistent service provider. Students will change schools as they move From Early Intervention to Preschool, From Preschool to Kindergarten/Elementary School, To Middle School, and From Middle School through High School. The Medical Home can support students by providing documentation of medical diagnoses and needs. The Medical Home can also assist the family helping the student become more independent, manage his or her health needs, and discuss issues that are not addressed in schools.

Hospital to Home/Community

After a hospitalization, the Medical Home can support the transition from Hospital to Home/Community and school by providing the family with needed documents for the school, coordinating referrals for needed services, and coordinating with the IEP team or school nurse to make sure educational and health needs are met.

Transition to Adulthood

As teenagers transition To College and Transition to Adulthood the Medical Home may still play a role in providing needed documentation of disabilities for Guardianship/Estate Planning or accomodations in college classes, but the role shifts to helping the youth become more independent and learn to manage his or her own health care. One of the biggest challenges for young adults is Finding Adult Health Care. The pediatric Medical Home can help by recommending adult care providers that have experience caring for CYSHCN and by providing information to the new adult Medical Home to ease the transition process. The Medical Home can also help the young adult find additional resources in the community for Employment/Daytime Activities, Independent Living, Transportation - Where's My Ride, Genetic Counseling, and Health Insurance/Financial Aids.

Where to Find More Transition Information on the Portal

In addition to the content in the pages mentioned above, information about transition is included in many of the Diagnoses & Conditions Modules. We encourage Medical Homes to explore the information provided on the Portal and Contact us if there is additional information that would be helpful in supporting their patients and families.

Resources

Information & Support

For Professionals

Got Transition for Youth and Families
This user-friendly site has a step-by-step guide for families with specific information about health care transition; provided by the Center for Health Care Transition Improvement.

Health Care for Adults with Intellectual & Developmental Disabilities - Toolkit for Clinicians (Vanderbilt)
A compilation of knowledge resources, checklists, "Health Watch Tables" for autism, Down syndrome, fragile X, Prader-Willi, Williams syndrome, and 22q11.2 deletion syndrome, and other resources developed for primary care providers of adults with developmental and intellectual disabilities; Kennedy Center for Excellence in Developmental Disabilities.

Coding for Transition-related Services (GotTransition.org) (PDF Document 642 KB)
Detailed overview of CPT coding options for the provision of transition-related services, from GotTransition.org.

Transitions (National Center for Medical Home Implementation)
Information for clinicians about transitioning pediatric patients to adult health care. Includes links to AAP guidance, videos, tools, and resources

Competencies for Young People Transitioning (TEACH) (Word Document 24 KB)
A suggested list of competencies that young adults should have as they transition to post-secondary school or work. Topics include health condition, medical providers, insurance, independent living, recreation, and other general skills; from the Kentucky TEACH Project.

Transition Timeline (Shriners Hospitals for Children) (Word Document 40 KB)
A sample of a clinician’s checklist for patients 16-20 years of age to monitor status of transition topics, including those related to school, work, health care, transportation, and more.

Parent's/Caregiver's Transition Worksheet (Utah Family Voices) (Word Document 52 KB)
A printable worksheet to help parents and caregivers determine strengths and needs to help their youth transition to adulthood.

Utah's Transition Action Guide: for Students with Disabilities and Team Members (PDF Document 151 KB)
In this guide you will find the requirements under the special education law for transition and principles of transition plan development. Additional sections of the guide are designed to address the unique roles, responsibilities and expectations for each of the potential transition team members. January 2011, updated June 2015.

Life Span Skills for Health (PDF Document 95 KB)
For providers, this list includes skills that youth and young adults should develop as they change roles and take charge of their own healthcare, from understanding their condition to managing appointments and medications. From Healthy and Ready to Work.

Checklist for Transition (HRTW National Resource Center) (PDF Document 96 KB)
A concise checklist (dated 2002 but still useful) for practices to review their transition system for young adults moving to adult care.

A Guide for Health Care Providers: Transition Planning for Adolescents with Special Health Care Needs and Disabilities
Information and checklist for providers to help youth transition to adulthood. Includes the topics of health care, law, education, employment, recreation, and more. Companion manual for families and teens available; produced by the Institute for Community Inclusion at Children's Hospital, Boston 2000.

Transition Resources for Providers, University of Illinois
Division of Specialized Care for Children (DSCC), from by the University of Illinois at Chicago. Includes general information for providers on transition from childhood to adulthood, including fact sheets, tools, transition timelines, and other materials.

Adolescent Health Transition Project (University of Washington)
Resource for adolescents with special health care needs, chronic illnesses, physical or developmental disabilities to understand the transitioning of healthcare and education to adulthood systems; Center on Human Development and Disability at the University of Washington.

Transition Coalition (University of Kansas)
Free, on-line training for learning more about transition to adulthood, especially relevant for new care coordinators; University of Kansas, Department of Special Education.

For Parents and Patients

Help Me Grow Utah
Information service that connects families of young children to community resources; developmental screening tool provided to parents; and monitoring of referrals to resources. Services are available in English and Spanish. Help Me Grow’s target population is children ages 0-8 years-old who live in Utah.

Tools

Pediatric to Adult Care Transitions Initiative (ACP)
Condition-specific transition tools for clinicians transitioning patients with intellectual/developmental disabilities, congenital heart disease, type 1 diabetes, Turner syndrome, sickle cell disease, end-stage renal disease, juvenile idiopathic arthritis, and others; from the American College of Physicians, in collaboration with the American Academy of Pediatrics.

Transition Referral Form (PDF Document 22 KB)
Sample form to track referrals to other agencies providing transition services. From the Collaborative Medical Home Project.

Transition Toolkit for Clinicians (gottransition.org) (PDF Document 765 KB)
14-page guide with questions for adolescents/youth and their parents/caregivers to assess their view of the importance of transition and their confidence in managing it, along with recommended actions to reinforce and support them; published 2018 by GotTransition, a program of The National Alliance to Advance Adolescent Health.

Helpful Articles

Blum RW.
Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care.
Pediatrics. 2002;110(6 Pt 2):1301-3. PubMed abstract

Olsen DG, Swigonski NL.
Transition to adulthood: the important role of the pediatrician.
Pediatrics. 2004;113(3 Pt 1):e159-62. PubMed abstract / Full Text

Cooley WC, Sagerman PJ.
Supporting the health care transition from adolescence to adulthood in the medical home.
Pediatrics. 2011;128(1):182-200. PubMed abstract / Full Text

Authors & Reviewers

Last update/revision: September 2015
Current Authors and Reviewers:
Author: Alfred N. Romeo, RN, PhD