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

Back to top

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 year before 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.

Back to top

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.

Back to top

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):

• Effects of aging on individuals with disabilities
• Safe use of medications
• Maintaining a healthy lifestyle
• How to be a better health care consumer

Back to top

Current Activities on Transition at the American Academy of Pediatrics

The AAP Council on Children with Disabilities is working on promoting collaboration between pediatric and adult health care providers, both in education and clinical practice.  The COCWD plans to develop liaison relationships with organizations working on transition, including MCHB's Healthy and Ready to Work (HRTW) program. 

Through a cooperative agreement with the National Center on Birth Defects and Developmental Disabilities at the CDC, the COCWD is working to present at national meetings for family medicine, med/peds, adolescent medicine and general internists.  They will meet with the leadership of these organizations to generate new projects and distribute materials on adolescent transition.  A future goal is to develop a curriculum on transition to adulthood for adult-oriented health care providers. 

Further project information is available from Jill Ackermann, AAP Division of Children with Special Needs, 800-433-9016 Ext. 7863 or jackermann@aap.org.

October 2005

Back to top

Information on Adolescent Transition

The Washington State Adolescent Health Transition Project

Wonderful 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.

www.depts.washington.edu/healthtr/index.html

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.

           www.cms-kids.com/CMSNetwork/transition.html

AAP and US MCHB Policy Statements on Adolescent Transition

Transition policy statements from the American Academy of Pediatrics and the US Maternal and Child Health Bureau

www.medicalhomeinfo.org/publications/transition.html#policy

 

The Youthhood Website - www.youthhood.org

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.

'Best Boy' and 'Best Man' Documentaries

'Documentary filmmaker Ira Wohl spent three years following his cousin Philly Wohl, a 52-year-old retarded man. Philly's parents Pearl, 72, and Max, 78, have cared for and sheltered him all his life, but now they must help him to become self-sufficient in preparation for the day when he will be forced to care for himself. The film follows Philly as he first ventures out into the world alone and meets with psychologists and counselors at a training center. Winner of the Academy Award for Best Documentary Feature, Ira Wohl's BEST BOY remains one of the most beloved and critically-acclaimed docs of all time. Wohl's story centers around his 52-year-old cousin Philly, who has been mentally retarded since birth and has never lived apart from his parents, Max and Pearl Wohl. Now elderly, ailing, and concerned about Philly's future after their deaths, the Wohls are prompted by Ira to begin teaching their son self-reliance. As Philly moves from summer camp to training center and finally to an independent group home, BEST BOY becomes a stark but tender portrait of a family confronting life's impermanence and change. The DVD edition features Wohl's follow-up film BEST MAN, which revisits Philly 20 years later as he continues to live on his own.

Back to top

Further Information on Specific Transition Issues

Nutrition and Transition to Adulthood for Youth with Special Health Needs Using Enteral Nutrition

The May/June 2005 issue of Nutrition Focus authored by Cam Lanier RD, CD

focuses on  transition issues around enteral nutrition. 

(Order form at http://depts.washington.edu/chdd/ucedd/CO/Nutrifocus.pdf
or call Sharon Feucht, MA, RD, CD at 206-685-1297)

Empowering Youth - Patti Hackett's Transition Top Ten Tips

An Example of a Personal Medical Summary Sheet for Young Adults

Adolescent patients and their confidentiality: Staying within legal bounds.

(General topic, not targeted to youth with special health care needs)

Anderson SL, Schaechter J, Brosco JP.  Contemp Pediatr. 22(7):54-64, July 2005.

Earning trust and losing it: Adolescents' views on trusting physicians.

Explores how adolescents with and without chronic illness perceive patient-physician trust and identifies physician behaviors that might be modified.

Klostermann BK, Slap GB, et al.  Journal of Family Practice.  (Online at www.jfponline.com)  August 2005, 54(8):679-687.

Back to top

= Adobe Acrobat file format. Help with PDF