Adolescent Healthcare Transition for Youth with Special Needs

Health affects all aspects of life – school, community, and job success are all associated with health. The increasing number of youth with disabilities and chronic health conditions surviving into adulthood has necessitated a shift in the approach to educational, health, employment, and independent living services. The emphasis has shifted toward ensuring inclusion and full participation of individuals with disabilities and chronic health conditions in education, meaningful employment, and community living. To achieve these goals, youth with disabilities and chronic health conditions require support and services to help transition in all aspects of their adult lives and especially healthcare. Healthcare Transition should address:

Lack of availability of qualified adult providers.

Differences in services between pediatric and adult settings.

Absence of referral networks.

Lack of institutional support for providers.

Role of Physician

In 2002, the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians – American Society of Internal Medicine issued a consensus statement focusing on the responsibilities of physicians in transition planning for youth with disabilities and chronic health conditions.[1] The statement emphasized that physicians must play a key role in helping youth transition to adult health care. Ideally, transition planning should be a team effort between youth, the youth’s family, and the youth’s health care providers, including the pediatrician, the adult primary care provider and specialists. Providers should:

Understand the rationale for transition from pediatric to adult health care.

Have the knowledge and skills to facilitate that process.

Know if, how and when transfer of care is indicated.

Strategies that Work

There are several recommended actions that should be taken to facilitate successful healthcare transitions for youth with disabilities and chronic health conditions.

  • Patient-centered medical homesthat include family-centered, culturally competent approach to health care for youth with disabilities and chronic health conditions, along with a high-quality relationship between the youth, family, and provider, are ideal clinical settings for care.
  • Training of pediatric and adult providers is required to develop competencies in transition planning.
  • An activated patient is the foundation for a successful transition.
  • Transition teams are beneficial to address the complex, individualized, and multi-faceted process of a transition plan.
  • Transition planning should occur early in adolescence for most patients to allow for adjustment.
  • Providers, youth and families should be encouraged to develop and maintain a portable, accessible, and up-to-date medical summary.

Engaging Adolescent and Their Families in Transitioning to Adult Care

Presentation Take Away Points

  1. Transition represents a time of changing support systems, moving from an entitlement system to an eligibility system. Further, as an Employment First state, RI youth are expected to obtain meaningful employment.
  2. Many of the most significant challenges in transition are not specifically health challenges but rather involve social, financial and personal/independence issues including transportation, eligibility, housing, employment, and independent living.
  3. Gaining independence is a process.
  4. Encouraging adolescents to be involved in community, school, and social activities helps them to explore their interests, strengths and weaknesses.
  5. Everyone has an opportunity to use their time constructively.
  6. Transition takes time including preparation and face-to-face time.
  7. A person with a disability is foremost a person!
  8. For specific health issues there are national resources:
  • The American College of Physicians (ACP) is currently working on transition guidelines for a wide array of conditions with outlines of care needs and transition readiness assessments geared towards physicians who care for adults. These will be released at their spring meeting, 2016.
  • For on-line resources: the national clearing house has many references and resources, as do national organizations for a wide range of conditions (for example, Turners syndrome, spina bifida, cancer survivorship, and cystic fibrosis).
  1. Local transition resources:
  • The RI Department of Health, Office of Special Needs has on-line resources and offers live trainings: especially geared to supporting an activated patient. Resources include Youth Transition Workbook, Ready Set Go! Checklists, Dare to Dream Conference, Healthy Lifestyles Classes, Youth Internship Program.
  • Rhode Island Parent Information Network (RIPIN) works with patients and families to assess needs and support transition in personal, vocational and health care needs.
  • The Transition Consultation Clinic at Hasbro Children’s Hospital is offered at the Medicine Pediatrics Primary Care Center 444-6118.
  • The Adolescent Leadership Council (TALC) of Hasbro Children’s Hospital prepares teenagers with chronic medical conditions for the transition to adulthoodthrough interactive groups that involved discussion, activities, and mentoring. TALC is a free program that has both teen and parent groups. For more information, contact 401-444-7563, email at , or visitthe website

[1] American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. “A consensus statement on health care transitions for young adults with special health care needs.” Pediatrics. 2002; 110(6): 1304-1306.