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Overview

The Maternal Child Health Bureau identifies youth with special health care needs (YSHCN) as ‘those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.’ It is estimated that 21% of adolescents have SHCN and each year 750,000 adolescents with SHCN move into adulthood.*

Transitions from pediatric to adult health care for youth are increasing in importance for two main reasons. First, many children are surviving to adulthood with chronic disorders that had previously limited life-span to the pediatric ages. Twenty to thirty years ago, children with diseases such as cystic fibrosis, congenital heart disease and childhood cancers had life expectancies of perhaps only a handful of years.

Currently 80% or more of these children survive to early adulthood and beyond. Secondly, the population of individuals with intellectual disabilities (ID) [formerly mental retardation (MR)] has been moved from primarily institutional-residential settings to community-residential settings. Health care provision and expertise for this population that was previously housed at institutional-residential centers is now expected to be provided in community-based primary care offices. Systems support, provider knowledge and skills in the management of health and behavioral issues for individuals affected by chronic illness and developmental disabilities, and patient/family/caregiver knowledge, management skills and support all are in need of marked improvement in order to meet the needs of this growing population.

*Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics. 115(6):1607-12, 2005.

Youth with Special Health Care Needs:
Promoting Successful Health Transition to Adulthood

As a primary health care provider you can help youth with special health care needs and their families through a successful transition to adult health care and other services. Discuss with youth and families the best time to transition to an adult health care provider. Offer recommendations of adult-care physicians and specialists who understand special health care needs.
Encourage Youth to:

  • Know their medications
  • Schedule their therapy appointments
  • See medical professionals alone, as appropriate
  • Be active in decision-making about their health care
  • Learn about medical problems & identification of symptoms needing medical attention
  • Talk with other youth with similar health problems
  • Be an expert about their disability or illness

Encourage Families to:

  • Respect the youth’s privacy
  • Recognize the youth’s need for increasing independence and separation
  • Realize that all youth, including those with special needs are vulnerable to early sexual activity, pregnancy, substance abuse, sexual abuse, exploitation, and other at-risk behaviors
  • Address sexual issues early and often, and in a way the youth can understand
  • Gradually move from parent decision-maker to that of a consultant
  • Talk with other families whose youth have transitioned to adulthood

Additional Resources:

Got Transition .org

  • Health Care Provider pages– Customizable tools based on your practice setting- 1) for youth transitioning to adult care, 2) youth transitioning to an adult approach to health care without changing providers and 3) Integrating young adults into adult health care.
  • Health Care Transition Resources – resources in English and Spanish to help families with a smooth transition.

Coding and Reimbursement Tip Sheet for Transition from Pediatric to Adult Health Care
Created by the American Academy of Pediatrics and Got Transition, a cooperative agreement between the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health, this tip sheet provides an overview of new and innovative payment models that support the services involved in transition from pediatric to adult care. Included are sample CPT codes, descriptions, and payment for same.

Transitions to Adult Care Resources from NICHQ

Care Transitions for Young Adults with Special Health Care Needs (from the Journal of General Internal Medicine)

  • March 2013: Volume I – Care transitions for young adults with special health care needs (YASHCN) and the significance of aligning pediatric care with adult medicine.
  • April 2013: Volume II -Important resources for YASHCN related to legal rights, insurance, reproductive health, and cancer survivorship

National Resource: Health Care Transition Research Consortioum
An organization of volunteer adolescent/emerging adult patients with chronic conditions, parents and health providers/researchers with the purpose to advance an evidence-based research agenda on health care transition and self-management.

 

Transition Supports and Services for Families to Consider

By age 14

  • Assure that the Individualized Education Program (IEP) has a transition plan that includes health goals. Youth receiving special education services at school have an IEP and can remain in school until age 21. The IEP, by law, must include transition planning by age 14 and transition services by age 16. If the youth is not enrolled in Special Education Services, the physician may be a primary source of information and referral for community supports and services.

By age 17

  • Explore health care financing for youth. In Washington State, if an adult child is deemed dependent, private insurance coverage continues throughout adulthood.
  • Inform Division of Vocational Rehabilitation about the youth by autumn of the yearbefore they graduate.
  • Begin guardianship procedures, if appropriate, 2 months before age 18. Guardianships may be limited or full.

At age 18

  • Check eligibility for SSI the month youth becomes 18. At age 18, the youth’s financial resources are evaluated, not the parents’/guardians’. Recipients of SSI in Washington State receive Medicaid coverage.
  • Investigate SSI Work Incentives such as Plan for Achieving Self-Support (PASS) and Ticket-to-Work (TTW).
  • Contact campus student disability services to request accommodations for youth attending college.

By age 21

      • For youth with developmental disabilities, notify Division of Developmental Disabilities (DDD) for adult vocational services.
      • A child can be signed up for DDD services at any time; the earlier the better.

Health Transition Planning for Young People and Their Caregivers

Smoothing the transition to adult care. Bennett DI, Towns SJ, Steinbeck KS. Med J of Australia. 182(8):373-374, April 2005. (From the Transitional Care for Young People with Chronic Childhood Illness Group of the Greater Metropolitan Clinical Taskforce of New South Wales, Australia)

Phase I: Preparation

The pediatric coordinating team (Pediatric clinicians, young person, family/caregivers, relevant others):

  • Identifies the need for transition to adult care
  • Identifies one member as case manager for continuity through the process,
  • Plans and prepares for active transition,
  • Ensures that a baseline ‘assessment of readiness’ checklist is completed for and by the young person, family/caregivers and staff, and,
  • Identifies, selects, includes and contacts appropriate adult services

Phase II: Active Transition

The case manager:

  • Evaluates ‘assessment of readiness’ checklist on an ongoing basis,
  • Engages a combined pediatric and adult transition team in partnership with the young person and family/caregivers, and
  • Ensures successful transfer to adult services

Phase III: Integration

The case manager:

      • Ensures transfer is completed and care is integrated into adult services, including designation of a new case manager
      • Evaluates quality outcomes, and
      • Evaluates ‘assessment of readiness’ checklist for indicators of success.

Health and Wellness for Adults and Elders with Developmental Disabilities

Four Powerpoint Learning Modules addressing health issues for adults with developmental disabilities (in English and Spanish):

    • Getting Good Health Care
    • Medications: Promoting Safe and Appropriate Use
    • Supporting People with Developmental Disabilities during the Aging Process
    • Toward Healthy Aging: Promoting HealthTHrough Lifestyle Changes

 

Information on Adolescent Transition

    • The Washington State Adolescent Health Transition Project
      Information and tools to assist health care providers and families who have children or youth with special health care needs from birth through young adulthood.
    • Supporting Adolescent Health Care Transition in the Medical Home
      (From the American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, and the Transitions Clinical Report Authoring Group)This clinical report represents expert opinion and consensus on the medical home practice-based implementation of transition for all youth beginning in early adolescence. It provides a structure for training and continuing education to further understand the nature of adolescent transition and how to support it. Primary care physicians, nurse practitioners, physician assistants and medical subspecialists are encouraged to adopt these materials and make this process specific to their settings and populations. Pediatrics 2011;128:182-200.
    • Transition Workbooks – Children’s Medical Services Network
      Health Care Transition Workbooks for Parents and Youth created by John Reiss, Ph.D. and Robert Gibson, MSOTR/L  and the Institute for Child Health Policy at the University of Florida.
      Workbooks for ages 12-14 years, 15-17 years and 18 years and older.
    • AAP and US MCHB Policy Statements on Adolescent Transition
      Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home (AAP July 2011)
    • The Youthhood Website
      Sponsored by the National Center on Secondary Education and Transition at the University of Minnesota. Free, interactive, and dynamic Web site that young adults and their teachers, parents, and mentors can use to plan for life after high school. Grounded in the principals of universal design, the site addresses the future planning needs of all youth.The Youthhood includes information, interactive activities and a wealth of other tools to help youth connect their future goals to their academic learning. The site addresses youth directly, but it is intended to be used in classrooms, community programs, or any other settings where adults work with youth. The Youthhood is organized like a neighborhood. Each section of the neighborhood provides tools and information to help youth plan for the future. Sections include The High School, The Job Center, The Community Center, The Hangout, The Health Clinic, The Government Center and The Apartment.