Coming of Age with Special Needs: Health Care Transition

The transition from childhood to adulthood is an important developmental stage for everyone. This transition can be especially challenging for youth with special needs. The American Community Survey (ACS) estimates that in 2017, 13.2% of the US population had some form of disability. This is a substantial increase from 12.5% in 2010. Part of this increase can be traced to an increase in the prevalence of children with special needs who require long-term care and support into adulthood.

Because of the importance of continued medical care, it is recommended that parents and children begin transition planning as early as possible. In fact, the American Academy of Pediatrics recommends that a written health care transition plan should be created by age 14. The plan should include what services are needed, who will provide them, and how they will be financed.

It is important for youth to understand the importance of managing their own medical needs, as it becomes their responsibility once they are 18 years old. When a child turns 18, parents no longer have legal control over the child’s healthcare decisions. This guide shares important considerations for a successful medical transition from childhood to adulthood for individuals with special needs.

Shifting from Pediatric to Adult Health Care

Paying for Care

How medical treatment for people with special needs will be paid for is of great concern. Once children become adults (age 18), they may need to apply for Medicaid and Supplemental Security Income (SSI). The Red Treehouse resource guide Medicaid Tips for Families can help you learn more about Medicaid. It is important for a young adult to apply for adult Medicaid to ensure that they have continuing care and that their needs are addressed. Young adults should also be aware that once they are 18, SSI is based on their own income and assets, instead of their parents’. In many cases a person who did not qualify for SSI as a minor can qualify as an adult even if they still live with their parents.

Understanding Conditions and Treatments

When possible, youth with special needs should understand their condition(s) and the reasons for the medical treatment they receive. They should have this understanding of their special needs before entering the adult healthcare system. Building a young person’s confidence and knowledge that they are in control of their health will result in a smoother transition to adult healthcare.

Tips for Successful Transition

To plan for a successful healthcare transition parents (or guardians), with their children, need to:

  1. Find out the age limits for your child’s pediatric/adolescent practice. Ask your child’s pediatrician early about their role in the health care transition planning. This will help to begin a partnership between you and the pediatrician and to ensure a smooth transition. This is a good opportunity for you to establish if your child’s pediatrician can provide overlapping adult and pediatric care. See got transition for more on this.

  2. Find out what your healthcare insurance’s policies are regarding the age limit of services provided by pediatric/adolescent care. This will help lay out a timeline for when the transition must be completed.

  3. If you are concerned that your child’s special need may prevent him/her from making informed decisions about medical care, you may need to learn what your state’s requirements are for limited guardianship. For more information on the process of obtaining guardianship in Ohio, see this helpful explanation by Disability Rights Ohio.

  4. Pacer.org lists several things you should consider when looking for an adult health care provider. Key points include:

    a. Consider things that are important to your child, such as how they will get to the new office, whether the new doctor is on staff at the hospital you would like to use, and whether the provider specializes in your child’s special health care needs.

    b. Gather recommendations of providers that you and your child can consider. In doing so, make sure to check your health insurance website to find out if potential new providers are in-network with your insurance.

    c. Interview potential providers. Sit down with your child and make a list of questions that you want to ask each one. See the Pacer site for a list of good questions.

    d. After each interview, discuss whether your child felt the specific provider was a good fit. See the Pacer site for a list of things to discuss with your child.

ADDITIONAL RESOURCES

For more information on how to transition from pediatric to adult healthcare as a person with special needs, check out some of the sites and resources below. [It is important to note that each state has different programs.]

Parent Center Hub: Find Your Center

Family-to-Family Health Information Centers

Adolescent Health Transition Project

Health Care Transition

Being a Healthy Adult: How to Advocate for Your Health and Health Care


This guide was developed as part of a project made possible by a grant from the Ohio State Bar Foundation. The views expressed herein do not necessarily represent those of the Ohio State Bar Foundation.

Lead researchers/authors: Jessica Hamad, J.D. Candidate, 2020, Cleveland-Marshall College of Law; Helen Livingston Rapp, Esq., RedTreehouse.org Volunteer

Jeanine Carroll