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Transition to Adulthood

Introduction

Each state has programs and support to help youth with special needs transition to adulthood. In addition to the information in this section of the Medical Home Portal, you can find out what your state offers by talking with your Center for Parent Information and Resources (CPIR) (AKA Parent Training and Information Center (PTI) or Family-to-Family Health Information Centers (F2F HICs).

Preparing For Transition

For a person with special needs, transitions start in childhood and continue through adulthood. The goal of transition planning is to help a child become more able to do things for himself as he becomes an adult.
Transition planning includes:
  • Shifting from pediatric to adult healthcare with health insurance;
  • Leaving school for work, college, or other choices;
  • Moving from home to a supportive place to live; and
  • Becoming less dependent on family as one builds skills and gains more abilities.
One key to becoming an independent adult is for your child to gain self-knowledge. By learning more about her diagnosis and handling medications, and learning about what she would like to do for school or work, your child will be better able to make choices for herself about the future.
Some young adults will still need support from their parents or legal guardian to work with agencies and fill out the paperwork needed to qualify for adult services. Whether a young adult is making his own choices or relying on the help of a guardian, he’ll find it helpful to set up a portable and up-to-date health care summary.

From Entitlement to Eligibility

At 18, your child is legally an adult—a title that comes with new freedom, responsibilities, and a new system of care and support for education, health care, and other services.
  • Education: As a student, your child was entitled to an education and may have received services from special education and/or a 504 plan. However, students who plan to stay in school beyond the 12th grade need to be determined eligible for services. Students who meet eligibility requirements may receive student services until the age of 22.
    • Whether your young adult plans to leave high school after the 12th grade or at the age of 22, at age 18 she will need to be determined eligible for services. Because this involves many programs with different funding sources and eligibility rules, it can be unclear and time consuming. It often involves filling out many forms, but if you and your child start this ahead of time, you’ll learn what you need to know to make this change as easy as possible.
  • Health care: One type of change your child may face once he is an adult (age 18) is that he will now need to apply for Medicaid and SSI based on his own income and assets, instead of based on yours.
    • As soon as a young adult has his 18th birthday, he should apply for adult Medicaid to make sure he has continuing care.
    • Adult Medicaid may not have all the same services that your child received when younger.
    • The federal Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit provides medically necessary services to eligible children on Medicaid through the age of 21; after that, young adults are no longer protected by EPSDT federal law.
  • Other services: Because each state has its own rules on eligibility for state and federal aid, it is key that as a parent you get guidance from your state Family to Family Health Information Center (F2F HIC), Parent Training and Information Centers (PTI), State Human Service Agencies, and Social Security Administration.
    • While Social Security is available to adults with disabilities, it is a safety net, Social Security income is moderate and fixed.
It is recommended to look at your choices as part of your transition planning starting as early as age 14.

Help with Transition Planning

Youth and young adults with special needs, when possible, should be the leading voices when planning for their transitions, applying for programs that meet their needs, and finding ways to include their strengths, hopes, and dreams in their future lives.
  • All possible efforts should be made to include people with disabilities in the same age endeavors as their peers without disabilities, such as college, vocational training, recreation, and work.
  • Parents, with their expertise and knowledge of their children, are vital partners in the planning of transition programs. Teachers, aides, counselors, and others who know your child may also be helpful in transition planning.
Local Family to Family Health Information Centers and/or Parent Training and Information (PTI) Centers can help families with useful insights and resources to understand what is needed for a strong transition from pediatric to adult health care.
Local PTI Centers can provide families with valuable assistance resources. For example, Utah’s PTI center, the Utah Parent Center, has put together a useful handbook about transition. Along with tips on how to help your child find her strengths and interests, the handbook presents six key areas to help your family plan for a smooth transition from the entitlement system of schools, to the adult eligibility system:
  • Learn and understand the laws that govern the rights of adults with disabilities.
  • Understand the planning process so you can help your young adult make choices about his future.
  • Gather the information and documentation your young adult will need when he applies for adult services.
  • Explore the services and programs available to your young adult.
  • Understand how the adult system of services works.
  • Learn about the appeal process and legal requirements of the agencies your young adult may use.
To learn more about each of these items, you can download the handbook, “Transition from School to Adult Life,” and find more information on the Utah Parent Center's Transition to Adult Life webpage.

Resources

Information & Support

For Parents and Patients

Got Transition
Center for Health Care Transition Improvement, a national resource for improving health care transition supports for youth moving into the adult health care system, for health care professionals, families, youth, and state policy makers. The Six Core Elements of Health Care Transition 2.0 define the basic components of health care transition support.

Adolescent Health Transition Project, University of Washington
A user-friendly resource for adolescents with special health care needs, chronic illnesses, physical or developmental disabilities; gives information on what transition is. Center on Human Development and Disability (CHDD) at the University of Washington.

Transition Screening Tool and Care Plan (PDF Document 23 KB)
Sample screening tool that addresses various transition topics including health, transportation, psychosocial, legal rights, employment, and more. Sample action plan for youth and young adults; gives a way to keep track of tasks that need to be done for transition. Typically used together but can be used alone. From the Collaborative Medical Home Project.

Youth Leadership Toolkit
Guide book and DVD videos for youth/young adults, parents, medical providers, and other professionals with tips from young adults to assist in transitioning to adulthood. Includes transportation, finding adult health care, healthy relationships, employment/volunteering, self-advocacy and independent living. Developed by Independent Living Research Utilization (ILRU) in collaboration with the Center for Persons with Disabilities and the Becoming Leaders for Tomorrow Project.

Ready Set Go Checklist (PDF Document 3.4 MB)
A series of checklists to help young people think about planning for their future: Ready, Get Set, Go. Provided by Rhode Island Department of Health and adapted from Bloorview Kids Rehab, Toronto, CA.

Get Set Checklist (PDF Document 1.6 MB)
The second in a series of checklists to help young people think about planning for their future. The "Get Set" in "Ready, Set, Go" - fillable format. Provided by Rhode Island Department of Health and adapted from Bloorview Kids Rehab, Toronto, CA.

Go Checklist (PDF Document 1.6 MB)
The third in a series of checklists to help young people think about planning for their future. The "Go" in "Ready, Set, Go" - fillable format. Provided by Rhode Island Department of Health and adapted from Bloorview Kids Rehab, Toronto, CA.

Authors & Reviewers

Initial Publication: July 2008; Last Update: November 2018
Current Authors and Reviewers (click on name for bio):
Contributing Author: Gina Pola-Money
Reviewer: Alfred N. Romeo, RN, PhD
Funding: Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.
Authoring history
(Limited detail is available on authoring dates before 2014.)
2005: first version: Robin PrattCA; Barbara Ward, RN BSCA; Joyce DolcourtCA; Kristine FergusonCA; Teresa Such-Neibar, DOCA; Lynn Foxx PeaseCA; Helen PostCA; Roz WelchCA
AAuthor; CAContributing Author; SASenior Author; RReviewer