When our children are babies, we look forward to the first smile, laugh, and word. We encourage them to take each new step. As children approach the teen years, we often worry about their new skills. It’s one thing to see a toddler start to walk. It’s another to drop a teen at the mall with friends or to hand over the car keys. It may be especially hard for parents of teens with special health care needs to “let go,”—allowing their teens to set their own limits and have “teen” experiences.
Teens also develop at different rates. It’s important to let them figure out how to handle new skills and responsibilities, yet still be there to provide help and advice. Youth with special health care needs may need unique supports. Your health care provider can refer you to helpful services. Parents can also learn about services, resources, and supports from each other, school, and community sources. Share these resources and supports with your teen’s health care provider as part of your parent/provider partnership.
In many cultures, families celebrate coming of age with special rites and traditions. Help your health care provider learn about your culture, values, and preferences. You may prefer that you, or another adult in your family or community, be the one to talk to your teen about body changes, intimate relationships, sexuality, and responsibility for choices about health and wellness. By sharing this information and your preferences with your child’s health care provider, together you can partner in preparing your child for all of the changes during the adolescent years.
When you and your teen’s health care provider work together to ensure that your teen receives health services and needed supports, you are modeling the skills they will use to make health decisions as an adult. To prepare for this responsibility, it is important for teens to learn their medical history, making them informed partners in their own health care.
Then, teens can “test drive” these skills. Let them take on more responsibility. Let your teen take the lead during the health care visit. Ask your teen to think about questions to ask or specific topics to address with the provider. This is also the time to begin planning for health care transition—the move from pediatric to adult health systems. Families, teens, and current health care providers should partner and work together to ensure that teens are ready to manage their own health needs. Goals should include choosing adult providers and developing new health partnerships. This is especially important for teens with special health care needs. Some specialty providers continue with their patients. Others will work with you and your teen to transfer care to adult health care providers, hospitals, and health systems for adults.
Many teens with special health care needs have teams of doctors, but your teen still needs a yearly well-visit with a primary health care provider. These health visits help ensure and support your teen’s overall health. This yearly exam is also a time to screen for secondary health conditions that can occur in all teens. Well-visits are a time to discuss puberty, healthy eating, physical activity, mental and emotional health, risky behaviors, friends, and school. This is also the time to talk about other services and supports that your teen has now or may need in the future.
Teens with special health care needs may have more transitions than their typical peers between ages 11 and 21. In addition to moving to adult health care systems, some teens will receive full or partial guardianship. This involves an adult with the legal authority to make some or all decisions for a person making choices about health care, finances, or other parts of adult life. Whether or not to pursue guardianship can be difficult for families. Know that there are other options available that can help your teen keep their rights while still allowing to provide support for their decision-making. Supported decision-making can be an effective way for a teen to make decisions with guidance from a trusted adult. You can find more information by visiting the Got Transition website at https://www.gottransition.org/ or the National Resource Center for Supported Decision-Making website at http://www.supporteddecisionmaking.org/. For additional assistance with this process, you can contact your Family-to-Family Health Information Center (F2F). Visit https://familyvoices.org/affiliates/ to find a local F2F chapter.
Some teens with IEPs may need more than 4 years to complete high school. Part B of IDEA allows them to stay in school through age 21. Transition planning should begin no later than age 16 in most states and by age 14 in other states. Transition planning should include goals for post-high school employment and independent living. Discuss this transition plan with your school team and share it with your health care provider in order to help the school and health care providers work together to meet the needs of your teen. You can contact the Parent Training and Information Center (PTI) in your state to get assistance on this transition process. Visit https://www.parentcenterhub.org/find-your-center/ to find your local PTI.
If your teen gets support from a state agency, find out if eligibility changes at age 18. You can contact your local F2F to discuss your child’s current services and determine what services may be available to your youth as they move into adulthood.
With the passage of the Patient Protection and Affordable Care Act (ACA) in March 2010, parents are currently able to keep any adult child on their health plan until age 26. The ACA also stops health insurers from denying coverage to children and adults with preexisting conditions. This means that your health insurer cannot deny coverage for your teen because of their disability. Some health plans cover dependents with disabilities of any age who are unable to work. Check with your health insurance plan to determine if coverage is available for dependent adults with disabilities. However, your teen may also be eligible for Medicaid through your state if they meet the Social Security Administration’s disability criteria.
In some states, a teen with special health care needs may meet the Social Security Administration’s disability criteria, which allows a teen to access SSI and Medicaid benefits; however, if family income is too high, the teen may not be eligible to get these benefits. When a teen turns 18 years old, even if still living at home, family income no longer counts towards the teen’s eligibility. Depending on the teen’s income and assets, they may now be able to receive SSI and Medicaid.
Applying for SSI and Medicaid can be a difficult process, and some individuals who meet the criteria as children do not always qualify as adults. This is because the definition of disability is stricter for adults. Sometimes your young adult with a disability may receive a denial-of-benefits letter from Social Security initially. However, many individuals receive approvals after 1 to 2 appeals of the decision. Contact the F2F Health Information Center in your state in order to get more information on eligibility, the appeal process, and other health financing options by visiting https://familyvoices.org/affiliates/.
Youth and families’ questions and concerns are the #1 priority. The health care provider may also discuss
Your health care provider will
Questions and concerns from teens and families are the #1 priority. The health care provider may also discuss
Your health care provider will
Your young adult’s concerns and questions are the #1 priority. The health care provider may also discuss
Your health care provider will