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Transition Issues

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Overview

Children and youth with special health care needs (CYSHCN) face many transitions in care during their lifetime. Preventing gaps in care and finding new professionals and organizations that can provide services during and after transitions is challenging, particularly when transitioning from pediatric to adult health systems. For example, young adults can have difficulty finding internal medicine or family practice clinicians and specialists when they become too old to continue seeing their pediatricians. Similarly, it can be difficult for parents to find services once their child ages out of Early Intervention (Part C) and before entering kindergarten. This page provides information and tools for primary care clinicians to assist during times of transition.

Birth to Three

When a child with special health care needs is born, the primary care provider can support families in learning how to care for their child, access specialty services, and cope with lifestyle changes. More specifically, clinicians can:
  • Outline the health care needs of the child and the time frame for follow-up with specialists.
  • Ensure that the family has adequate supplies to care for the baby’s unique needs.
  • Refer families with infants and toddlers who have developmental delays or are at risk for delays to the Early Intervention Part C Program.
  • Maximize the medical home team services (care coordinators, case managers, nurses, and/or social workers) to facilitate the family’s transition into their new role.
  • At subsequent primary care visits, review the infant’s needs and assess the family’s ability and comfort level in meeting those needs; monitor for new problems that may arise. Well-child visits enable the clinician to frequently monitor and catch early developmental problems or other issues in children not previously recognized as having special health care needs.
  • Monitor for post-partum depression (see Postpartum Depression Screening) and provide referrals for counseling or medication management when indicated.
  • Use standardized Developmental Screening and Infant & Early Childhood Social-Emotional Screening tools to help identify developmental delays and children at risk for autism.
  • When infants or toddlers do not pass screenings, or there is considerable family concern about development, refer to the Early Intervention Part C Program and/or for an autism evaluation as appropriate.
  • If the infant does not qualify for Early Intervention Program services, the medical home should help families find Additional Early Services in the community.
  • Refer the family to Early Services, 0-5 Years for additional explanation of these resources.

School Transitions

After age 3, as children begin to access services from the local school system, the medical home becomes the single, consistent service provider. Students 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. To support school transitions, clinicians can:
  • Provide documentation of medical diagnoses and needs.
  • Complete emergency action plans, health plans, and medications needed at school.
  • Educate the family about working with the school district to access beneficial services/therapies through an IEP (see Special Education Laws and Process) or 504 plan (see 504 Plan) when applicable.
  • Assist the family to help the student become more independent, manage his or her health needs, and discuss issues that are not addressed in schools.

Hospital to Home

After a hospitalization, to support the transition from Hospital to Home/Community and school, the clinician can:
  • Provide the family with needed documents for school.
  • Coordinate referrals for needed services.
  • Coordinate 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 can:
In Utah, a project to help pediatric providers support youth and young adults to transition to adult healthcare is underway. The Transition to Adulthood-Utah Provider Health Care Transition Toolkit (PDF Document 5.7 MB) is recommended for any pediatric practice, and can be modified as needed to work best for your patients and workflow. The Toolkit is based on the Got Transition framework, developed by Intermountain Children’s Health in conjunction with Primary Children's Hospital, Utah Department of Health, University of Utah Health, and the Utah Parent Center.

Resources

Information & Support

In addition to the content mentioned above, information about transition is included in many of the Diagnoses & Conditions modules and Navigating Transitions with Your Child. We encourage medical homes to explore the information provided on the Portal and Contact us if there is additional information that would help other clinicians support patients and families.

For Professionals

Transition to Adulthood-Utah Provider Health Care Transition Toolkit (PDF Document 5.7 MB)
Provider Health Care Transition Toolkit - Quick Start Guide for Pediatric Patients Graduating to Adult Care. Based on the Got Transition framework, developed by Intermountain Children’s Health in conjunction with Primary Children's Hospital, Utah Department of Health, University of Utah Health, and the Utah Parent Center.

Utah Children’s Care Coordination Network (Medical Home Portal)
The Utah Children’s Care Coordination Network (UCCCN) was formed in late 2014 to be a source of information, resources, tools, expert advice, and peer learning and support for pediatric and family practice staff members who help coordinate the care of patients.

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.

Respecting the Young Adult Video (UISP)
An 8-minute video of a panel discussion of young adults with special healthcare needs offering their perspectives to healthcare providers to improve sensitivity; Utah Integrated Services Medical Home Project.

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

Special Education: School to Post-School Transition (Utah State Board of Education)
Assessment tools for educators, including the National Technical Assistance Center on Transition’s toolkit and the Utah State Board of Education’s manual for age-appropriate transition assessments.

2022 Coding and Payment Tip Sheet for Transition from Pediatric to Adult Health Care (PDF Document 509 KB)
Thirty-two page booklet of CPT coding options for the provision of transition-related services; from Got Transition and the American Academy of Pediatrics.

For Parents and Patients

Transition to Adult Life/Adult Services (Utah Parent Center)
Search result for Transition Resources on Utah Parent Center website

Youth to Adulthood Transition Program (Utah Department of Health CYSHCN)
Utah Department of Health, Children With Special Health Care Needs program information to help with the transition from youth to adulthood. Provides information the support parents and guardians, and empower adolescents during this period in life and educate them on the responsibilities of becoming an adult.

Health Care Transition Resources for Youth & Young Adults (Got Transition)
A 6-step approach to help individuals gain independent health care skills, prepare for an adult model of care, and transfer to new providers; provided by the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health.

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.

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; Kentucky TEACH Project.

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.

Help Me Grow National Center
A national organization of state programs focused on screening young children for developmental and behavioral problems and connecting their families with services.

Patient Education

Let’s Talk About... Let’s Talk About: Transitions for Children and Adolescents with Special Health Care Needs (Intermountain Healthcare) (PDF Document 76 KB)
Three-page, printable handout explaining the various transitions for different age groups and what to expect regarding developmental, medical, and educational issues.

Tools

Checklist for Transition (HRTW) (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; Healthy & Ready to Work National Resource Center.

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

Pediatric to Adult Care Transitions Initiative (ACP & AAP)
Condition-specific 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; American College of Physicians in collaboration with the American Academy of Pediatrics.

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 the status of transition topics, including those related to school, work, health care, transportation, and more.

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

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

McManus M, White P, Barbour A, Downing B, Hawkins K, Quion N, Tuchman L, Cooley WC, McAllister JW.
Pediatric to adult transition: a quality improvement model for primary care.
J Adolesc Health. 2015;56(1):73-8. PubMed abstract

Campbell F, Biggs K, Aldiss SK, O'Neill PM, Clowes M, McDonagh J, While A, Gibson F.
Transition of care for adolescents from paediatric services to adult health services.
Cochrane Database Syst Rev. 2016;4:CD009794. PubMed abstract

Farre A, McDonagh JE.
Helping Health Services to Meet the Needs of Young People with Chronic Conditions: Towards a Developmental Model for Transition.
Healthcare (Basel). 2017;5(4). PubMed abstract / Full Text

Nathawad R, Hanks C.
Optimizing the Office Visit for Adolescents with Special Health Care Needs.
Curr Probl Pediatr Adolesc Health Care. 2017;47(8):182-189. PubMed abstract

Authors & Reviewers

Initial publication: July 2008; last update/revision: January 2021
Current Authors and Reviewers:
Author: Jennifer Goldman, MD, MRP, FAAP
Authoring history
2019: update: Jennifer Goldman, MD, MRP, FAAPA
2008: first version: Alfred N. Romeo, RN, PhDA
AAuthor; CAContributing Author; SASenior Author; RReviewer