Transition to Adulthood

Transition Supports

Every state has different programs and resources to help youth with special needs (and their families) 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 contacting your local Center for Parent Information and Resources (DOE) or Family-to-Family Health Information Centers (F2F HICs).

From Entitlement to Eligibility

For an individual with special needs, transitions are dynamic processes that begin in childhood and continue through adulthood. The goal of transition planning is to maximize a child’s independence as he reaches young adulthood.

Transition planning includes:

Shifting from pediatric to adult healthcare with adequate insurance;
Leaving school for work or alternative meaningful experiences;
Moving from home to an inclusive, supportive community; and
Minimizing dependence on family as one grows into a greater degree of self-sufficiency and self-determination.

One key to successful navigation of adulthood is for your child to gain self-knowledge. By learning more about her diagnosis and medication management, and discovering her educational and vocational interests, your child will gain independence, and be better able to make informed decisions about the future.

Some young adults will continue to need assistance from their parents or legal guardian to communicate with various agencies and fill out the necessary paperwork to qualify for the adult service systems. Whether a young adult is making his own decisions or relying on the assistance of a guardian, he’ll find it helpful to prepare an accessible, portable, and up-to-date medical summary.

At 18, your child is legally an adult—a title that comes with new independence, new responsibilities, and a new system of services, resources, and support systems. As a student, your child was entitled to an education and may have received services from special education and/or a 504 plan. Some students remain in school beyond the 12th grade, and some are eligible for student services until the age of 22. Regardless of whether your young adult exits from high school after the 12th grade, or at the age of 22, when education services for individuals with disabilities end, beginning with her 18th birthday she will need to be determined eligible for services. Because this process involves various programs with different funding sources and eligibility requirements, it can be confusing and time consuming. It often includes the completion of many forms, but if you and your child begin this process ahead of time, you’ll learn what you need to know to make this transition as smoothly as possible.

One example of the type of change your child will face once he is considered 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. Adult Medicaid may not provide all the same services that your young adult received when younger. The federal Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit provides medically necessary services to children on Medicaid until the age of 21; after that, young adults are no longer protected by EPSDT federal law. As soon as a young person has his 18th birthday, he should apply for adult Medicaid to ensure he receives ongoing care. Because each state has different rules regarding eligibility for state and federal benefits, it is crucial that as a parent that you receive guidance from your state Family to Family Health Information Center, Parent Training and Information Center, State Human Service Agencies and Social Security Administration. It is recommended to identify your options as part of your transition planning starting as early as age 14. Social Security is a safety net and income from that program is very limited.

Youth and young adults with special needs, whenever possible, should be the leading voices in providing essential information and insights when planning for their own transitions, applying for programs that meet their needs, and finding ways to incorporate their strengths, hopes, and dreams into their future lives. Every effort should be made to include transition youth with disabilities in the same age appropriate endeavors such as college, vocational training, recreation and employment as their peers without disabilities. Parents, with their unique expertise and knowledge of their children, are essential partners in the planning of transition programs. Also, professionals with knowledge of and interest in the youth may be helpful in transition planning and processes.

Local Family to Family Health Information Centers and/or Parent Training and Information (PTI) Centers can provide families with valuable insights and resources and help understanding the key areas for successfully transitioning from pediatric to adult health care.

The National Center for Transition, “Got Transition,” has many tools and resources geared toward youth and young adults with special needs and their families. You may find their website helpful as you plan for a successful transition into adulthood and adult service systems. See Got Transition?

Resources

Information & Support

For Professionals

Transitions (National Center for Medical Home Implementation)
Information for clinicians about transitioning pediatric patients to adult health care. Includes links to AAP guidance, videos, tools, and resources

Adolescent Health Transition Project, University of Washington
A resource for adolescents with special health care needs, chronic illnesses, physical or developmental disabilities. Center on Human Development and Disability (CHDD) at the University of Washington.

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

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.

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.

Kids as Self-Advocates (KASA)
KASA is a national, grassroots network of youth with special needs and 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.

A Guide for Health Care Providers: Transition Planning for Adolescents with Special Health Care Needs and Disabilities
Information and checklist for providers to help youth transition to adulthood. Includes the topics of health care, law, education, employment, recreation, and more. Companion manual for families and teens available; produced by the Institute for Community Inclusion at Children's Hospital, Boston 2000.

Utah 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.

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

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.

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

Transition Timeline ( PDF Document 32 KB)
This sample timeline from the Intermountain Collaborative, for ages 2-22, provides suggestions for things that parents and providers should be teaching and checking as children transition through different age ranges and on to adulthood.

For Parents and Patients

Utah Bureau of Children with Special Health Care Needs (UDOH)
Provides services for children with special health care needs, including clinical services, care coordination, newborn screening, and birth defect surveillance; an agency under the Utah Department of Health, Division of Community and Family Health Services.

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.

Disability Law Center, Utah
A nonprofit 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 Parent Center
A nonprofit organization that 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.

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 School for the Deaf and the Blind
Information about programs including programs for infants and toddlers, school-age students, and residential services. Information about the Braille Literacy Advisory Committee, school calendar, newsletters and more.

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

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.

Utah Vocational Rehabilitation
A web-based locator for Utah state offices, Vocational Rehabilitation assists and empowers eligible individuals with disabilities to achieve and maintain meaningful employment.

Utah Center for Assistive Technology (UCAT)
Offering information and technical services to help people identify and obtain the technology that will help them become more independent in their lives. Augmentative communication, bicycle, steering wheel, and wheelchair assistance: assessment and cost estimate. Utah Augmentative Alternative Communication and Technology Teams evaluate children for assistive technology needs for school.

Utah 2-1-1
A free information and referral line for health, human and community services. 2-1-1 provides information and referral on topics such as emergency food pantries, rental assistance, public health clinics, child care resources, support groups, legal aid, and a variety of nonprofit and governmental agencies. Call for quick answers. The online directory provides anytime access to the same information. Confidential and free.

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.

Utah Transitions to the Future ( PDF Document 1.5 MB)
This flyer from Intermountain Sandy Clinic (Medical Home) offers tips and Salt Lake area transition resources for families of youth with special health care needs. Resources include mental health, independent living, driving, guardianship, jobs, community supports, and other resources.

A Parent's Guide on Puberty for Children with Disabilities ( PDF Document 7 KB)
A toolkit for parents to use as they choose, this publication was developed and written by Vanderbilt Leadership Education in Neurodevelopmental Disabilities (LEND) long-term trainees.

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.

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.

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

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.

State Education Contacts and Information
Contact the department of education in your state, or the adult ed, arts, child care, higher ed, humanities, libraries, PTA, special ed, tech-prep, vocational rehabilitation, vocational-technical, or other education office in your state.

Center for Parent Information and Resources (DOE)
Maintains a large resource library with information related to children with disabilities. Parent Centers in every state provide training to parents of children with disabilities and provide information about local conferences, support groups, and finding schools and other local services; Department of Education, Office of Special Education.

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.

National Center on Secondary Education and Transition
The National Center on Secondary Education and Transition (NCSET) coordinates national resources, offers technical assistance, and disseminates information related to secondary education and transition for youth with disabilities in order to create opportunities for youth to achieve successful futures. NCSET is headquartered at the Institute on Community Integration in the University of Minnesota's College of Education and Human Development.

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.

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

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.

Autonomy Checklist ( Word Document 45 KB)
A sample checklist that includes an extenisve list of home skills; health care skills; community skills; lesisure skills; vocational options; and living arrangements; from the University of Washington.

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

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.

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 Collaborative Medical Home Project.

Waisman Center Transition
Waisman Center, University Center for Excellence in Developmental Disabilities (UCEDD) at the University of Wisconsin-Madison. Includes general disability-related resources including links to many organizations related to transition to adulthood, carrers, independent living, employment, health, education, transportation, benefits, and more.

Answers 4 Families
From the Nebraska Transition Project, this site provides information on healthcare, employment, education, life skills, and other topics. Information includes handouts, videos, and links to other sites.

Americans with Disabilities Act ( PDF Document 64 KB)
This handout provides brief information for families about the ADA. Adapted from the Kentucky Commission for Children with Special Health Care Needs.

Authors & Reviewers

Initial Publication: July 2008; Last Update: September 2013

Current Authors and Reviewers (click on name for bio):

Contributing Author:	Gina Pola-Money
Reviewer:	Alfred Romeo, RN, Ph.D.

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 Pratt^CA; Barbara Ward, RN BS^CA; Joyce Dolcourt^CA; Kristine Ferguson^CA; Teresa Such-Neibar, DO^CA; Lynn Foxx Pease^CA; Helen Post^CA; Roz Welch^CA

^AAuthor; ^CAContributing Author; ^SASenior Author; ^RReviewer