Transitioning to Adulthood: Starting the Journey

Planning for adulthood with a child who has special needs isn’t a single, one-time event. It is a journey that begins in childhood and continues as your child grows. Every family’s path is different, but the goal is to help your child become more independent and confident as they grow toward adulthood.

What Does Transition Planning Include?

Building skills so your child learns to rely more on themselves than on others.
Encouraging self-advocacy and community involvement.
Moving from pediatric to adult healthcare, including figuring out health insurance.
Exploring what comes after high school whether it is work, college, or another path.
Planning for future living arrangements, whether staying at home, moving out, or finding supportive housing.

A big part of independence is self-knowledge and self-advocacy. Encourage your child to learn about their diagnosis, manage their medications, and think about their goals for school or work. Person-centered planning ensures that your child’s strengths, preferences, and goals are at the center of any future planning.

Some young adults will still need help from parents or a legal guardian with things like paperwork and interacting with agencies. Whether your child is making decisions on their own or with support, keep an up-to-date care notebook to share with new doctors or support teams.

Understanding the Shift: From Entitlement to Eligibility

At age 18, your child becomes a legal adult. This brings new freedoms, responsibilities, and changes in how they access support for education, healthcare, and other services. They may need to apply for programs like Supplemental Security Income (SSI) based on their own assets and income. SSI is a federal program administered by the Social Security Administration (SSA) that provides Medicaid coverage and monthly payments to eligible individuals who meet both income and disability criteria. Children and youth enrolled in Medicaid are covered by the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) provision up to their 21^st birthday, meaning they can receive the services they need. For more information on the EPSDT provision, visit Children’s Services Policy | Executive Office of Health and Human Services.

Who can help me make decisions about my life?

Before you turned 18, your parent or guardian may have been involved with your medical care, educational progress, and helped you navigate the systems that serve your behavioral health needs. This may change once you turn 18 because you are now considered to be an adult capable of making your own decisions. In most cases, you will be able to manage this new responsibility. However, you can choose the supports you want from your parent, guardian, family member, or a trusted adult as everyone can use help from others in making important decisions. Before you turn 18, you and your family should explore options for decision-making assistance that may benefit you once you become an adult. It’s OK to ask for help.

Build a support network

You can ask someone you trust, including one of your parents or a relative, to help you keep track of appointments, medications, important medical records, communication with doctors, and other healthcare needs. Because of privacy laws, you may need to sign a release so your provider knows they have your permission to talk to someone else. Each doctor or provider will need a separate release form.

Healthcare decisions

You can complete and sign a Durable Power of Attorney—a written statement that gives a trusted adult (agent) like one of your parents or a relative, your permission to make healthcare decisions for you when you are not able to make a decision. You can download a blank Durable Power of Attorney form from the Department of Health’s website.

Financial Support

If you do not want to manage your Social Security or VA disability benefits, you have a few different options.

Ask the Social Security Administration (SSA) of the Veteran’s Affairs Administration (VA) to appoint another person or agency to manage your benefits. This person or agency is called a Representative Payee at the SSA, and a Fiduciary at the VA. You need to complete and submit an application with SSA and/or the VA. After your application is processed, your Representative Payee or Fiduciary will get your benefit checks and will help you use your money to buy the things you need.
Appoint someone to be your Power of Attorney for finances. A Power of Attorney (POA) gives another person (agent) permission to make important decisions. You can have a POA for healthcare and for finances. It can be two different people or the same person.
Other less formal things you can do to get help managing your money include joint bank accounts, credit cards with spending limits, debit cards with low withdrawal amounts, and notification alerts when your bank account is accessed. Ask your bank or credit union for help with these things.

There are many options to get help with making decisions for healthcare, education, employment, or other areas of your life. for decision-making assistance. You can decide what kind of support is best for you.

What happens when I turn 18?

Up to age 18	Age 18 or older
Making appointments
Your parent, guardian, or social worker schedules your appointments.	You schedule your own appointments. You can ask someone else, including your parent or a trusted friend or relative, to come with you to your appointment.
Getting to appointments
Your parent, guardian, or social worker usually provides transportation to your appointments.	You need to schedule your own transportation. Ask your doctor about how to get help getting to appointments or ask about telehealth appointments. Medicaid members of any age can get Non-Emergency Transportation via MTM. Some providers can schedule MTM appointments on behalf of patients, and some can’t. Scheduling A Trip \| Executive Office of Health and Human Services
Appointment reminders
Your parent, guardian, or social worker reminds you about your appointments.	You are responsible for keeping your appointments and remembering when they are. Some offices require at least 48 hours (2 days) notice to cancel an appointment. If you cancel your appointment too late or forget to cancel it, you might have to pay for your appointment anyway.
Paying for services
Your parents or guardians are responsible for paying for services.	You are responsible for paying for any services that your health insurance doesn’t cover.
Talking to doctors and consent for care
Doctors and other providers talk about your treatment and medications with you and your parents or guardians. By Rhode Island law, anyone age 16 or older can consent to being examined, tested, or treated for a reportable communicable disease, including HIV and sexually transmitted diseases.	You talk to your doctor and other providers about your treatment and medications.
Sharing healthcare information
Until you turn 18, your parents or guardians make decisions about who can access your healthcare information. Even if you are 16 and consent to your own care, your parents can still access those medical records until you are 18.	When you turn 18, you decide who sees your medical information, and you must give permission before anyone else can see your medical information. If you want your parents or guardians to see your medical information, you must tell your doctor that it is okay for them to see it.

When you turn 18, the primary responsibility for your healthcare changes from your parent, guardian, or social worker to you. As you get older, your healthcare needs will change, and you may need to change providers. You can ask trusted adults to help you with this transition. Here are some things to remember as you start to take more responsibility for your healthcare:

Many pediatricians will stop seeing you as a patient between ages 18 and 21.
If you go to a doctor who sees adults and children (family practitioner), you may decide to keep seeing the same doctor or you can switch to someone else. Your current doctor can also help you figure out how to manage the changes in benefits and resources when you turn 18, so you should talk to them about your healthcare needs.
Sometimes the services you received as a child through the Department of Children, Youth, and Families (DCYF), the schools, or Medicaid may be different from the services that are available to you as an adult. Getting access to the services you need and knowing how to pay for them is an important thing to do during your healthcare transition.
As an adult, you will need to continue to talk to your doctor about sex and reproductive health and when you should get screenings for diabetes, cholesterol, or other risk factors.
For Medicaid, when you turn 19, you will be evaluated for Medicaid eligibility under a different category. In many cases, your Medicaid coverage will continue without stopping.
If you change health insurance plans, you might also have to change doctors and providers.

Transitioning to adult healthcare is part of the process of becoming independent and learning to manage your own health. It is a personal journey that is based on your unique circumstances and history.

What happens when I turn 18 and I live with my parent or guardian?

Plan your transition

Talk to your parent or guardian about what will happen with your behavioral healthcare when you turn 18. Ask if the provider you see now accepts adult patients.

If you get special education services, make sure that your school transition team helps you make sure your behavioral healthcare needs are met.

Check your benefits

If you are covered under your parent or guardian’s health insurance, ask if you are covered until you are 26.

If you have Medicaid, when you turn 19, you will be evaluated for Medicaid eligibility under a different category. In many cases, your Medicaid coverage continues without stopping. If Medicaid needs more information from you to verify your eligibility, you will get a letter in the mail from Medicaid.

Find new providers

Contact your health insurance company to ask for referrals to adult providers. Use the member services phone number that is on the back of your insurance card.

If you are covered under Medicaid, call the member services phone number on the back of your insurance card and ask for in-plan providers.

You can also ask your current providers to recommend an adult doctor who accepts your insurance.

Things you should know about keeping Medicaid

If you are enrolled in Medicaid after you turn 19, the State may periodically review your eligibility to make sure you still qualify for coverage. The Executive Office of Health and Human Services (EOHHS) will try to renew your coverage automatically using information they already have. If EOHHS needs more information from you, you will get a renewal form or request for information. Be sure to read and respond to any notices from the State by the deadline. If you do not respond when information is needed, you could lose your Medicaid coverage.
Make sure the State has your current address so you get any letters they send to you.

What happens when I turn 18 and I am in foster care or I leave foster care between age 18 and 21?

Plan your transition

Talk to your DCYF social case worker. Make sure they know you will need behavioral health services after you turn 18. Let them know where you will be living and what services you will need. Your social worker should help you with finding adult providers.

If you get special education services, make sure your IEP transition team helps you get your healthcare needs met.

Check your benefits

If you are in foster care and open to Family Court when you turn 18, you are entitled to healthcare benefits until you are 26 as long as you are a Rhode Island resident. Your case worker will make sure you are automatically enrolled in Medicaid before you leave DCYF

If you received Supplemental Social Security (SSI) benefits while you were at DCYF, your DCYF social worker will help you reapply for benefits before you turn 18. Adult criteria for SSI eligibility are different than childhood eligibility criteria.

Voluntary Extension of Care (VEC)

The Voluntary Extension of Care (VEC) Program supports young adults who are in DCYF care at age 18 and want continued assistance as they transition into adulthood. It also allows youth who left DCYF care at 18 to return as long as they are younger than 21.

The program helps participants become self-sufficient, independent, and successful adults through a youth-driven process. They work with a social case worker to set goals related to housing, education, employment, emotional support, and long-term stability.

Before entering the program, participants sign an Agreement for Participation in the DCYF VEC Program that outlines expectations. Young adults are required to actively work toward education and career goals and must meet at least one ongoing requirement, such as attending high school or a GED program, being enrolled in college or vocational training, participating in job training or barrier-reduction activities, working at least 80 hours per month, or having an approved medical waiver with required documentation from a licensed medical professional.

DCYF provides financial assistance for housing and personal needs while coordinating with other agencies to connect youth to additional supports and services. Eligibility includes young adults who were in DCYF care when they turned due to abuse, neglect or dependency, including those whose cases have closed, those who previously participated in VEC, and those whose adoptive or guardianship placements were disrupted after age 18 but before age 21.

Referrals to VEC are typically initiated by a social case worker and reviewed by VEC staff, followed by an intake meeting to plan next steps. Participants are assigned to a VEC social case worker and remain under Rhode Island Family Court supervision while in the program.

Things you should know about keeping Medicaid

If you age out of foster care, you are entitled to Medicaid coverage until you turn 26 under the Former Foster Care eligibility group.
The State may periodically review your eligibility to make sure you still qualify for coverage. The Executive Office of Health and Human Services (EOHHS) will try to renew your coverage automatically using information they already have. If EOHHS needs more information from you, you will get a renewal form or request for information. Be sure to read and respond to any notices from the State by the deadline. If you do not respond when information is needed, you could lose your Medicaid coverage.
Make sure the State has your current address so you get any letters they send to you.
If you need help or information about your healthcare eligibility or benefits, call a DCYF Medicaid Eligibility Specialist at 401-528-3500.
If you have questions or need more help, call the DCYF Family Support Line at 888-743-2659 or the Office of the Child Advocate at 401-462-4300.

What happens if I have an intellectual or developmental disability?

Apply for eligibility

The Division of Developmental Disabilities (DDD) at the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) oversees eligibility and services for adults with intellectual and/or developmental disabilities (I/DD). If you have an I/DD. Talk with your IEP care team about whether you will apply for services. If you decide to apply for services, do it 2 months before you turn 17. You decide whether you tell DDD about your behavioral health issue when you apply for DD services.

Download an application from BHDDH’s website or call 401-462-3421 to ask for an application to be mailed to you. BHDDH sends you a confirmation letter stating your application is received. If any information is missing, BHDDH will send you a letter and give you a phone number to call if you have any questions. Your completed application will be reviewed within 30 days.

Assess your abilities

If you are determined to be eligible for services, a member of BHDDH’s assessment team will meet with you and some of your closest supports (family, friends, teachers, service providers) to assess your needs.

Your assessment worker will use a questionnaire called a Support Intensity Scale (SIS), and it takes 2-3 hours to review together. The SIS will help with planning for the services you may need. The SIS may be completed any time after your are eligible for DDD services.

Plan your services

After you complete the SIS, you will be assigned a social case worker. This social worker will help you plan for your future and the services you may need. When you are ready to begin adult services, the social worker will ask for you to be assigned to a Conflict Free Case Manager, who will help you create a Person-Centered Plan for adult services. You decide whether to get individualized services through a provider agency or through self-directed supports.

The ISP lists the steps you need to take to reach your goals. Your ISP is submitted to BHDDH each year for approval. If you need behavioral health services, you have to apply for those services separately.

Things you should know

The following supports may be available to you:

Case management;
Supportive employment;
Integrated day and community activities;
Transportation;
Community and residential supports;
Emergency assistance; and
Access to transition support.

If BHDDH determines that you are not eligible for services and you want to appeal that decision, send a written request for review, within 30 days of receiving the decision letter, to Cynthia Fusco, DDD, 6 Harrington Rd., Cranston RI 02920-3080 or email Cynthia.fusco@bhddh.ri.gov.

What happens when I turn 18 and I am at the Rhode Island Training School or I leave prison?

Plan your transition

The social workers at the Training School and the discharge planners at the Department of Corrections will talk to you about your behavioral healthcare needs and include the information in your transition plan they make for you before you are released.

Tell the social worker where you will live and what behavioral health services you need.

Check your benefits

The social workers at the Training School and the discharge planners at the Department of Corrections will help you complete all of the medical insurance documents, including a Medicaid application. You will need to submit paperwork after you are released.

If you are 19 or older, you will need to get your own health insurance. Your health insurance can be Medicaid, insurance provided through your employer, or insurance provided through your college or university.

Find new providers

The social workers at the Training School and the discharge planners at the Department of Corrections will help connect you to adult behavioral healthcare providers.

If you need more information about finding adult behavioral healthcare providers, ask your current providers for a recommendation and make sure your new provider accepts you health insurance. If you are covered by Medicaid, call the member services phone number on the back of your insurance card to ask for in-plan providers.

Things you should know about keeping Medicaid

If you are enrolled in Medicaid after you turn 19, the State may periodically review your eligibility to make sure you still qualify for coverage. The Executive Office of Health and Human Services (EOHHS) will try to renew your coverage automatically using information they already have. If EOHHS needs more information from you, you will get a renewal form or request for information. Be sure to read and respond to any notices from the State by the deadline. If you do not respond when information is needed, you could lose your Medicaid coverage.
Make sure the State has your current address so you get any letters they send to you.

Resources

Got Transition website has a 6-step approach to help individuals learn independent self-healthcare 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.

How Healthcare Transition Works for Teens: guide for teens in Rhode Island with special needs to help them transition from pediatric to adult healthcare

How Healthcare Transition Works for Parents and Caregivers: a guide for Rhode Island parents and caregivers of young adults with special needs to help with the transition from pediatric to adult healthcare.

RIPIN Family Voices: supports families that are caring for children and youth with special healthcare needs (CYSHCN) and the professionals who serve them; This program helps strengthen family-provider partnerships with information, mentoring, and advocacy and helps families find a medical home for coordinated care.

Ready Checklist: First in a series to help young people think about planning for their future (fillable format); Provided by Rhode Island Department of Health (RIDOH) and adapted from Bloorview Kids Rehab, Toronto, CA. Ready Spanish

Get Set Checklist: Second in a series to help young people think about planning for their future (fillable format); Provided by RIDOH and adapted from Bloorview Kids Rehab, Toronto, CA. Get Set Spanish

Go Checklist: Third in a series of checklists to help young people think about planning for their future (fillable format); Provided by RIDOH and adapted from Bloorview Kids Rehab, Toronto, CA. Go Spanish

Tips for Transition Planning

Start early. Give your child plenty of chances to practice real-world skills, like setting their own alarm, and making their own doctor’s appointments. Encourage them to take the lead in planning their future using their strengths. Programs like Dare2Dream can help your child imagine and map out their future.
Help your child find programs and opportunities that fit their interests and strengths, whether that's in college, job training, recreation, or work. Make sure they're included in the same activities as their peers when it is safe and appropriate, and give them the freedom to explore.
Ask for help. Parents and caregivers are essential partners, but teachers, aides, counselors, and anyone else who knows your child well can be part of the team.
Reach out to community resources like RIPIN, The Paul Sherlock Center, and The Autism Project. These agencies offer a variety of trainings, events, resources, and support.

Information and Support For Parents and Young Adults

Transition Timeline: Information about transitions that happen at different points throughout an individual's life; Focus on early planning to help ensure the student and family are well-prepared. Provided by Rhode Island Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH), June 2022.

Cronograma de transición (en español) Este documento tiene como objetivo resaltar la línea de tiempo de la transición. Las transiciones ocurren en muchas etapas a lo largode 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 Rhode Island Department of Behavioral Healthcare, Division of Developmental Disabilities and Hospitals, Oct 2020

Rhode Island Youth Transition Workbook: helps Rhode Island youth with disabilities become self-advocates for themselves and others.

RI Center for Supported Decision Making: helps individuals and families understand their options to make an informed choice about supported decision-making that meets their personal needs

Transitioning to Adult Services: BHDDH’s website provides extensive information about how individuals with developmental disabilities transition to adult services; Includes information on eligibility, timelines and other resources. A Guide to Adult Services and Spanish from the Division of Developmental Disabilities.

Achieving a Better Life Experience (ABLE) Act savings accounts helps individuals with disabilities and their families save for future disability-related expenses on a tax-deferred basis without impacting their ability to qualify for SSI, Medicaid, and other federal programs.

Person Centered Planning: an ongoing planning, problem-solving, and decision-making process that allows the person to control the development; Person-centered plans identify the support, health and safety needs, preferences, strengths, and desired outcomes of the person. Content from the Center of Parent Information and Resources.

What's Next for Me?: Information about the Division of Developmental Disabilities’ (DDD) integrated, community-based system of services and supports for adults with developmental disabilities; Provided by BHDDH, 2024

¿Qué sigue para mí? (Spanish) La División de Discapacidades del Desarrollo (DDD) brinda un sistema de servicios y apoyos para adultos con DD integrado en unentorno comunitario. 2024

Paul V. Sherlock Center is the University Center for Excellence in Developmental Disabilities (UCEDD), for Rhode Island. They work to enhance the lives of individuals with disabilities, their families, and their communities. They provide information, training, technical assistance, services and research. Priority areas include Early Intervention, supports for school-age children, supports for transition-age youth and adults, access and use of technology, increasing self-determination across the lifespan and professional and workforce development.

Special Education Support from RIPIN: provides tools and information to help you advocate for your child’s needs; RIPIN offers workshops, peer support, a resource library, and assistance with IEPs and 504 plans.