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.

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.

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.

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.

As teenagers transition To College and Transition to Adulthood, the medical home can:

• Provide needed documentation of disabilities for Guardianship/Estate Planning or accommodations in college classes.
• Help the youth become more independent and learn to manage his or her health care.
• Recommend adult care providers that have experience caring for CYSHCN. See Finding Adult Health Care.
• Provide information to the new adult medical home to ease the transition process.
• Help the young adult find additional resources in the community for After High School Options, Independent Living, Transportation Options for Young Adults, Genetic Counseling, and Health Insurance/Financial Aids.

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 Health Care Transition Toolkit ( 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.