Transition to Adulthood

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Each state has programs and support to help youth with special needs transition to adulthood. In addition to the information in this Medical Home Portal sub-topic, you can find out what your state offers by talking with your Center for Parent Information and Resources (DOE) (AKA Parent Training and Information Center (PTI) or National Center for Family - Professional Partnerships (F2F HICs). Subtopics included are:

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.

Resources

Information & Support

For Parents and Patients

Rhode Island Youth Transition Workbook (PDF Document 2.6 MB)
A workbook to help Rhode Island youth with disabilities to become self-advocates and leaders in their lives and the lives of others.

Rhode Island Healthcare Transition Guide for Young Adults (PDF Document 1.8 MB)
A guide for young adults in Rhode Island with special needs to help with the transition to adult health care.

Rhode Island Healthcare Transition Guide for Parents & Caregivers (PDF Document 2.1 MB)
A guide for Rhode Island parents and caregivers of young adults with special needs to help with the transition to adult health care.

Rhode Island Person-Centered Thinking Guide (PDF Document 3.2 MB)
Guide to help people, their families and friends, the people who support them, and all community members to implement a meaningful person-centered process and to provide person-centered services and supports; Paul V. Sherlock Center on Disabilities, Rhode Island College and Rhode Island Division of Developmental Disabilities (May 2018).

Rhode Island Person-Centered Thinking Guide (Spanish) (PDF Document 10.8 MB)
El propósito de la Guía de pensamiento centrada en la persona. Ayudar a las personas, sus familias y amigos, las personas que los apoyan y todos los miembros de la comunidad a implementar un proceso significativo centrado en la persona y proporcionar servicios y apoyo centrados en la persona.; Paul V. Sherlock Center on Disabilities, Rhode Island College and Rhode Island Division of Developmental Disabilities (May 2018).

Road to Transition: A Guided Tour for Accessing Adult Services (PDF Document)
The transition of moving from childhood to adulthood is a very important time in a person’s life. As a young adult or parent/caregiver of a young adult, you play a large role in the planning process when transitioning from school and children’s services to adult services and supports. Provided by RI Department of Behavioral Healthcare, Division of Developmental Disabilities and Hospitals, Nov 2021

Road to Transition: A Guided Tour for Accessing Adult Services (Spanish) (PDF Document)
La transición de pasar de la niñez a la edad adulta es un momento muy importante en la vida de una persona. Como adulto joven o padre/cuidador de un adulto joven, usted juega un papel importante en el proceso de planificación cuando hace la transición de la escuela y los servicios para niños a los servicios y apoyos para adultos. Provided by RI Department of Behavioral Healthcare, Division of Developmental Disabilities and Hospitals, Nov 2021

Transition Timeline for Caregivers and Youth (PDF Document)
Transitions occur at many stages throughout an individual's life and early planning is a helpful way to ensure that the student and family are well-prepared. Provided by RI Department of Behavioral Healthcare, Division of Developmental Disabilities and Hospitals, Oct 2020

Transition Timeline for Caregivers and Youth (Spanish) (PDF Document)
Este documento tiene como objetivo resaltar la línea de tiempo de la transición. Las transiciones ocurren en muchas etapas a lo largo de la vida de una persona y la planificación temprana es una forma útil de garantizar que el estudiante y la familia estén bien preparados. Provided by RI Department of Behavioral Healthcare, Division of Developmental Disabilities and Hospitals, Oct 2020

Transition to Adult Services through the Division of Developmental Disabilities brochure (PDF Document)
The Division of Developmental Disabilities (DDD) provides an integrated, community based system of services and supports for adults with developmental disabilities (DD) Provided by RI Department of Behavioral Healthcare, Division of Developmental Disabilities and Hospitals, Sept 2021

Transition to Adult Services through the Division of Developmental Disabilities brochure (Spanish) (PDF Document)
La División de Discapacidades del Desarrollo (DDD) brinda un sistema de servicios y apoyos para adultos con DD integrado en un entorno comunitario. Provided by RI Department of Behavioral Healthcare, Division of Developmental Disabilities and Hospitals, Sept 2021

Health Care Transition Resources for Youth & Young Adults (Got Transition)
A 6-step approach to help individuals gain independent health care skills, prepare for an adult model of care, and transfer to new providers; provided by the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health.

Parent Training and Information Centers (PTI)
Provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs of their children with disabilities. See the link for Download a List of Parent Centers across the USA to find the parent center in your state; U.S. Department of Education.

Family Voices (FVAO) or Health Information(F2F) Center
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and training.

Ready Set Go Checklist (Rhode Island DOH) (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.

Ready Checklist (PDF Document 1.9 MB)
The first in a series of checklists to help young people think about planning for their future. The "Ready" in "Ready, Set, Go" - fillable format. Provided by Rhode Island Department of Health and adapted from Bloorview Kids Rehab, Toronto, CA.

Get Set Checklist (Rhode Island DOH) (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 (Rhode Island DOH) (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.

Supplemental Security Income (SSI)
The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources; this link provides information on applying for SSI.

Services for Patients & Families in Rhode Island (RI)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: July 2008; last update/revision: November 2018
Current Authors and Reviewers:
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
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