Ages 13-16
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?”
While this guide targets age 13 as a starting point for transition planning, if your loved one is younger than 13 years old, you can still start thinking about the planning process. If your loved one is older than age 13 and you haven’t started discussions with your child’s medical team, you can still be successful in transitioning your child.
It is important to note that once your child becomes a legal adult at age 18, you may encounter additional obstacles that may be avoided if you complete certain tasks prior to your loved one’s 18th birthday.
Starting to think about the following items prior to each phase of the transition process can help you feel more confident and prepared as you enter this part of your loved one’s journey. Read through and consider each task. Which tasks are you capable of managing on your own and which tasks will you require assistance to complete? Knowing that upfront will be helpful.
- Begin having discussions with your child’s primary care physician and neurologist or epileptologist on what to expect and how they can help support the medical transition process. Confirm when your child will age out of their practices and the hospital in your current healthcare system.
- Have your annual medical transition discussion with your child’s primary care physician and neurologist or epileptologist.
- Contact the rare epilepsy patient organization that supports your community to learn ways to get connected with other rare epilepsy families starting this transition process.
- Have your annual medical transition discussions with your child’s primary care physician and neurologist or epileptologist.
- Review the Caregiver Assessment on Medical Transition Readiness Form. Research/Connect with parent disability groups in your community to start to build a network of resources to help you with the transition process.
- Consider a Special Needs Trust and/or ABLE account in order to protect assets saved in your child’s name and ensure eligibility for Supplemental Security Income (SSI) and Medicaid.
- Review bank accounts and financial planning. Money being saved in your child’s name may impact access to future financial resources. Check with your financial advisor to be prepared when it’s time to submit an SSI application when the child turns 18.
- If your child is already enrolled in a state waiver program, begin discussions on what changes to programming may take place after age 18 with your state agency case manager.
- If not in a waiver program, complete or update applications with your state disability services agency for adult disability waivers or programs.
- Begin exploring day programming and housing options because waiting lists can be several years long.
- Explore recreational opportunities or special rec programs in your area, including Special Olympics, Best Buddies, art, music, and/or theater programs.
- If you do not already have respite providers, explore options either through your waiver program or other community services.
- Make sure your child is receiving life skills planning, and if appropriate, vocational training as a part of their Individualized Education Program (IEP)/transition plan.
- If you haven’t already, contact the rare epilepsy patient organization that supports your community to learn ways to get connected with other rare epilepsy families starting this transition process.
- Have your annual discussion with your child’s primary care physician and neurologist or epileptologist. Ask for recommendations for adult primary care provider and adult neurologist and/or epileptologist to begin the process of identifying an adult primary care provider and adult neurologist or epileptologist for your child.
- Find out if there is an age cutoff for any of the other therapies your child receives. If so, get recommendations for providers working with adults.
TIP: A critical piece is to start searching for those additional adult providers who will become more frequent in your child’s healthcare journey. It is important to initiate an encounter (visit) during this age. Adult providers can continue to be included in subsequent visits until the handoff of clinical care has shifted. Note, if not possible to include the adult provider during your child’s visit with their pediatric provider, you can make separate appointments to ensure you begin to build a relationship prior to transitioning to an adult care team.
- Review the Caregiver Assessment on Medical Transition Readiness Form.
- Obtain a state ID from your local Department of Motor Vehicles (DMV).
- Review your estate plan to evaluate eligibility for governmental benefits, including Special Needs Trust and/or ABLE account.
TIP: Dependents of military families may be entitled to additional benefits through the Department of Defense. It will be important for these families to secure a disabled ID card for their child with rare epilepsy and to understand what benefits may be offered. You can visit the Survivor Benefit Program Children Only web page on defense.gov to learn more. When working with a financial advisor, it may be beneficial to find someone who understands military family benefits and how those benefits may impact other federal and state programs your child may be entitled to.
- Review parents’ wills (or other family members’ wills) if appropriate, to consider any inheritance money put aside for the child. The method of receipt may affect the child's access to public benefits, such as Supplemental Security Income (SSI) and Medicaid.
- Begin to identify professionals needed to allow you to complete guardianship and/or power of attorney paperwork (physician, social worker, and clinical psychologist). Consult with your state agency case manager/ educational team for guidance, including who should be guardian. You may also want to discuss this with healthcare providers.
- Check with your attorney to see if a healthcare proxy, also known as a durable medical power of attorney, is recommended or required in your state.
- Familiarize yourself with the educational process in your school district once your child completes the traditional high school program (post high school programs will vary by age and scope for each state).
- Discuss with your child’s educational team the timing to complete a neuropsychological evaluation, behavioral testing, and other tests needed for guardianship.
- Work with your educational team to start to create peer mentor relationships with high school students. These students can sometimes become great respite workers, in the long term.
- Begin to discuss day programming, residential, and work program options with educational staff for their input and suggestions.
- Identify community programs and services in your area and state.
- Connect with your patient community’s online support group to learn from other parents and share advice. They may even offer a group specific to caregivers of adults.
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This Guide can help you get organized, but should not be considered as a substitution for legal, financial, or medical advice.
VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.
Updated 05/08/25 (AM)