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Transition to Adulthood

What you will find in the pages of this section

As youth transition to adulthood, there are many things to consider, including health insurance, work, school, transportation, housing, and much more. This section provides information for parents and providers so that they can support youth in their growing independence. This section also has information for youth, teens, and young adults to help them learn new skills to be as independent as possible.
Please consult the menu on the left for the list of pages/topics included in this section.
"The physician's prime responsibility is the medical management of the young person's disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life." [Ansell: 1998]

Medical Home Top Ten How-To List for a successful transition

The goal of "transition" is for youth and families to learn to manage their health condition; access needed services and resources; and to live in the community as independently as possible with skill and self-confidence.
Focus on youth and family priorities.
  1. Teach and help youth to take responsibility for their own health care and instruct them in their disease and medications. See Resources, Checklists, etc. for resources.
  2. Prepare an up-to-date medical summary that is portable and accessible. See Medical Summary (PDF Document 18 KB) and Forms for sample forms.
  3. Start transition planning at the time of diagnosis and build it into every office visit.
  4. Set a goal to maximize independence.
  5. Have youth and family complete a transition screening using a tool such as the Transition-Screening Tool (PDF Document 20 KB) (Word version in Resources below). The health care team completes an assessment, using a tool such as the Adolescent Autonomy Assessment (Word Document 45 KB) , and, together with the screening tool, identifies needs.
  6. With the information gathered in the assessment, develop a written action plan, using a form such as the Transition Action Care Plan (PDF Document 14 KB) (Word Version in Resources below), to address the following issues of transition:
    • Advocacy and becoming a self-advocate;
    • Education issues and accessing appropriate educational services;
    • Employment opportunities or meaningful daytime activities;
    • Health care funding and acquiring health care funding and financial assistance;
    • Independent living, housing, transportation, and personal care;
    • Guardianship, estate planning, and other legal issues;
    • Sexuality, reproductive and genetic issues;
    • Social and recreational activities;
    • Spiritual needs;
    • Transition to adult health care, self-managing healthcare; and
    • Community resources. (For detailed information about these topics, see the additional pages included in this section of the web site.)
  7. Collaborate with the school transition team.
  8. Have pertinent information and resources (e.g. vocational rehabilitation, health care funding) readily available in the office: see all Vocational Education services providers (158) in our database and see all Health Insurance/Funding, Transition services providers (47) in our database.
  9. Prepare the youth and family to transition to an adult healthcare provider.
  10. Refer to a new provider, send records, and co-treat until the new provider and youth are established. For a sample form see: Transition Referral Form (PDF Document 22 KB) (Word version in Resources below).

Transition to Adulthood Overview: Who? When? & Why?

Over 90% of children born with special needs now reach adulthood. [What's Health Got to Do with Transition?] A strong transition program is imperative to the integration of our youth into the adult systems of care with adult roles and responsibilities. Though all developmental transitions are important, this module focuses on the transition from pediatric to adult systems of health care while preparing youth to achieve independence and self-determination to the greatest extent possible.

What is transition planning?

Transition in health care for young adults with special health care needs is a dynamic, lifelong process that seeks to meet their individual needs as they move from childhood to adulthood. Transition planning includes transitioning from:
  • Pediatric to adult health care with adequate insurance;
  • School to work or alternative meaningful experiences;
  • Home to an inclusive, supportive community; and
  • Dependence on family to self-determination to the greatest extent possible.
Youth and families are the key decision makers in a transition plan.

Who is involved in transition?

Parents and youth are essential partners in the planning of transition programs and care coordination with their health care provider. Their expertise in dealing with the needs and challenges of living with a special health care need, either as a caregiver or a consumer, provides unique insights that no professional can offer.
Youth with Special Health Care Needs (YSHCN) must have a major voice in providing essential information and insights into creating programs to meet their needs, and to incorporate their strengths, hopes, and dreams. Individuals (such as educators, care coordinators, and employers etc.) with knowledge of and interest in youth may also be included in transition planning.

When should transition process to adulthood begin?

Ideally planning begins at diagnosis and is a gradual, individualized process. Although health care needs will vary from patient to patient, the primary care practice should create a written transition plan by age 14. Sample timelines may offer suggested activities and agencies to contact; see Transition Timeline (PDF Document 32 KB) and Transition to Adulthood.

Why is transition to adult healthcare and services necessary?

Pediatric services are unable to meet all the needs of adult patients (adults are not big children). Youth receiving care in a pediatric practice setting will need referral to adult health care providers and a way to pay for their health care without interruption in services. It is important to empower youth and families with information and resources to proactively manage their care and to plan for the future. To assist in these transitions, health care providers must know what resources are available, eligibility requirements, and application processes. The Adolescent Health Transition Project provides some resources.
A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs, written by the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine provides guidance for medical providers.
In December 2002, a supplement to Pediatrics was published entitled, "Improving Transition for Adolescents with Special Health Care Needs from Pediatric to Adult-Centered Health Care." The supplement was sponsored by the Department of Health and Human Services' Health Resources and Services Administration. [Blum: 2002]

Resources

Information & Support

For Professionals

American Academy of Pediatrics Transition Website
This website offers information on transitions from pediatric to adult health care for adolescents with special health care needs.

Respecting the Young Adult Patient Video
The Young Adult Advisory Committee (YAC) for the Utah Medical Home - Integrated Services Project (UISP) provides these tips for doctors helping youth with disabilities transition to adult care services at the 2007 UISP/UPIQ Learning Session.

DSCC Transition Resources for Providers
Division of Specialized Care for Children (DSCC), from the University of Illinois at Chicago, provides transition information from childhood to adulthood including fact sheets, tools, transition timelines, and other materials for providers.

Adolescent Health Transition Project
A resource for adolescents with special health care needs, chronic illnesses, physical or developmental disabilities.

Social Security Work Site
Promotes the employment of Social Security beneficiaries.

Kentucky Transition Resources
From the Kentucky Cabinet for Health and Family Services, Commission for Children with Special Health Care Needs, downloadable printable teaching sheets for your patients on topics such as staying healthy, managing their own healthcare, future planning, working, and more.

Planning for Adolescents with Special Health Care Needs: A Guide for Health Care Providers
From the Institute for Community Inclusion, this manual provides information for providers to help youth transition to adulthood and includes the topics of health care, education, employment, recreation, and more. The site provides a companion manual for families and teens.

Transition Coalition
From the University of Kansas, Department of Special Education, this site provides information, resources, and training for providers to help them help youth transition to adulthood. Training includes best practices, cultural diversity, assessment, working with families and more.

Kids as Self Advocates
KASA is a national, grassroots network of youth with special needs and our friends, speaking on behalf of ourselves. We are leaders in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various issues. Those issues include: living with special health care needs, health care transition issues, education, employment, and many more. We also help health care professionals, policymakers and other adults in our communities understand what it's like to live with special health care needs and we participate in discussions about how to help each other succeed.

Internet Resource for Special Children
Directory of information for parents and medical providers caring for children with disabilities.

Independent Living Institute
This non-profit organization in Europe provides information, educational materials and an on-line library on disability rights and independent living issues.

Shriners Intermountain Transition Resource Guide 2003 (Word Document 290 KB)
Resources for transition services in Utah.

Transition-Screening Tool (Word Document 39 KB)
Sample screening tool that addresses various transition topics including health, transportation, psychosocial, legal rights, employment, and more. From the Utah Collaborative Medical Home Project.

Transition-Screening Tool (PDF Document 20 KB)
Sample screening tool that addresses various transition topics including health, transportation, psychosocial, legal rights, employment, and more. From the Utah Collaborative Medical Home Project.

Transition Action Care Plan (Word Document 42 KB)
Sample action plan for youth and young adults. From the Collaborative Medical Home Project.

Transition Action Care Plan (PDF Document 14 KB)
Sample action plan for youth and young adults. From the Collaborative Medical Home Project.

Transition Referral Form (Word Document 37 KB)
Sample form to track referrals to other agencies providing transition services. From the Utah Collaborative Medical Home Project.

Transition Referral Form (PDF Document 22 KB)
Sample form to track referrals to other agencies providing transition services. From the Utah Collaborative Medical Home Project.

For Parents and Patients

Got Transition?
Home of the National Health Care Transition Center, a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult's transition from pediatric to adult health care.

Healthy and Ready to Work
Information and connections to health and transition expertise nationwide, for families and providers from those in the know, doing the work and living it. This site focuses on understanding systems, access to quality health care, and increasing the involvement of youth. It also includes provider preparation plus tools and resources needed to make more informed choices.

Transition Services, Utah Bureau of CSHCN
Information about transition in Utah, links to local transition specialists (English and Spanish-speaking), and information about other resources, from the Utah Department of Health.

Bureau of Children with Special Health Care Needs, Utah Department of Health
Utah Children with Special Health Care Needs (CSHCN) is a bureau within the Utah Department of Health, Division of Community and Family Health Services that provides services for children 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".

Utah Statewide Independent Living Council (USILC)
Non-profit organization that promotes full inclusion, independence, and empowerment of people with disabilities through advocacy/systems change, planning/organization, education, networking, resource development and independent living service enhancement.

Disability Law Center
A private non-profit organization designated by the Governor to protect the rights of people with disabilities in Utah. Mission: To enforce and strengthen laws that protect the opportunities, choices and legal rights of people with disabilities in Utah.

Utah State Office of Education
Provides information about Utah schools, the school board, rules, regulations, and more.

Utah School for the Deaf and the Blind
Home page for the school of the deaf and blind.

State Education Contacts and Information
From the U.S. Department of Education, links to each state's education agency.

Vocational Rehabilitation
Assists and empowers eligible individuals with disabilities to achieve and maintain meaningful employment.

Utah Department of Human Services- Division of Services for People with Disabilities
Provides programs and services for people with disabilities. Important for all families of children with special needs to be aware of this service- the sooner, the better due to the waiting list.

Utah Center for Assistive Technology
Non-profit organization at the Utah State Office of Rehabilitation that assists individuals with disabilities.

National Center on Secondary Education and Transition
Provides information about transition during high school and to opportunities after high school including jobs, vocational education, and college. Provides links to contacts in each state for 1) State Transition Contact, 2) Regional Resource Center Contact, 3) State Director of Special Education, 4) Part B Contact, and 5) State Director or Vocational Rehabilitation.

Utah Parent Center
This statewide non-profit organization, founded in 1984, provides training, information, referral and assistance to parents of children and youth with all disabilities, including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities. The Center provides information on support and advocacy for families of children with special health care needs.

Technical Assistance Alliance for Parent Centers
Links to local Parent Centers which serve as resources for education and training for parents of children with disabilities; provide local conferences; provide support groups; provide autism information; assist parents in advocacy and finding school and other local services; and more. Funded by OSEP.

Center for Persons with Disabilities, Utah State University
A University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) that strengthens families and individuals across the lifespan through education, policy, and services.

Becoming Leaders for Tomorrow
This Project, from the Center for Persons with Disabilities at Utah State University, provides transition and leadership training information for youth and young adults with disabilities.

Access Utah
A statewide information and referral service providing information on issues related to people with disabilities; provides a list of equipment for sale.

DSCC Transition Resources for Families
Division of Specialized Care for Children (DSCC), from the University of Illinois at Chicago, provides transition information from childhood to adulthood including fact sheets, tools, transition timelines, and other materials for families.

Where Did the Time Go? Transition to Adult Life Pocket Guide
From the Training Resource Network, this 22-page pocket guide responds to the many teachers, families and students who requested a straightforward resource that was readable and covered the basics of transition, including the planning process, finding a job, furthering your education and housing and community life.

Transition Handbook: From 'No' Where to 'Know' Where (PDF Document 1.1 MB)
This handbook, from the Utah Parent Center, is designed for parents of children with disabilities to help them be active participants in developing transition goals and activities as their children transition to adulthood and includes information about steps to transition, graduation, laws, roles of players, transition planning, employment, training, independent living, timelines, advocacy, SSI, health care, guardianship, estate planning, and a directory of related Utah organizations.

Full Life Ahead Foundation
Provides the "Full Life Ahead: A Workbook and Guide to Adult Life for Students and Families of Students with Disabilities." This guide was created to offer parents and students the tools and information necessary to plan for their future. Developed and written by parents and students for other parents and students, this guide can help families successfully work through the transition process.

P.R.O. Filer Personal Portfolio & Filing System (PDF Document 160 KB)
P.R.O. filer - Personal Portfolio and Filing System (2000), an innovative tool designed by students for students that provides a way to organize important documents, keep records of school and community learning opportunities, and create a personal portfolio to showcase their accomplishments. Published by the Institute on Community Integration. See the companion Personal Portfolio Manual. For more tools, see the All Means All School-to-Work web site at http://ici.umn.edu/all/.

Personal Portfolio Manual (PDF Document 151 KB)
P.R.O. filer - Personal Portfolio and Filing System (2000), an innovative tool designed by students for students that provides a way to organize important documents, keep records of school and community learning opportunities, and create a personal portfolio to showcase their accomplishments. Published by the Institute on Community Integration. See the companion P.R.O. Filer Personal Portfolio & Filing System.

Keeping It Real: How to Get the Supports You Need for the Life You Want
This curriculum supports students as the transition from high school to adulthood and provides information and tools relating to transition; self-assessment; supports; employment and careers; education and training; living arrangements, recreation and leisure; and resources; from the University of Medicine and Dentistry of New Jersey.

All Means All School-to-Work
Provides transition information, tools, and more for students and parents.

Transition Worksheet (PDF Document 94 KB)
A worksheet to help consider options during transition to adulthood including living arrangements, transportation, employment, education, and more.

Transition Referral Form (Word Document 37 KB)
Sample form to track referrals to other agencies providing transition services. From the Utah Collaborative Medical Home Project.

Checklist for Transition (PDF Document 85 KB)
From Healthy and Ready to Work, this checklist is for medical practices to dtermine their knowledge and skills for supporting youth transitioning to adulthood in areas including policy, medical home, family/youth involvement, insurance and screening.

Transition Action Care Plan (Word Document 42 KB)
Sample action plan for youth and young adults. From the Collaborative Medical Home Project.

Plan Your Health, Live Your Life (PDF Document 8.1 MB)
Transitions are for everyone. This 6-page planning document has information for teens as they become adults including career goals, health, pregnancy planning, immunizations, STIs, personal safety, emotional health, finances, and more; developed by the Utah Department of Health and collaborative partners.

Services

Health Insurance/Funding, Transition

See all Health Insurance/Funding, Transition services providers (47) in our database.

Vocational Education

See all Vocational Education services providers (158) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Contributing Authors: Robin Pratt, 12/2005
Barbara Ward RN BS, 12/2005
Gina Pola-Money, 12/2005
Joyce Dolcourt, 12/2005
Kristine Ferguson, 12/2005
Teresa Such-Neibar DO, 12/2005
Lynn Foxx Pease, 12/2005
Helen Post, 12/2005
Roz Welch, 12/2005
Reviewing Author: Alfred Romeo RN, PhD, 7/2008
Content Last Updated: 1/2009

Funding/Support

Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.

Page Bibliography

Ansell BM, Chamberlain MA.
Children with chronic arthritis: the management of transition to adulthood.
Baillieres Clin Rheumatol. 1998;12(2):363-73. PubMed abstract

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 / Full Text