Ages 19-22
Transition to adulthood is a complex, confusing, and often emotional process. It’s also the first important step to plan for as you consider the long-term adult C.A.R.E. Plan for your loved one. For each family, the process can look and feel very different, because our wants and needs for our young adult can differ.
The following information can provide guidance and assist parents through the often intimidating process of transitioning out of young adult care into the world of adult services. Life is challenging enough when caring for a loved one with a rare epilepsy, and our hope is that this information will provide some helpful and timely guidelines to make the process more manageable.
It’s important to recognize that not only are each of our experiences different, but each state/county we live in has different rules, timelines, and disability entitlement programs. Please understand this document is just a guide, and some topics will require outside legal or financial assistance. You will also need to research your individual state programs and eligibility. If possible, connect with parents in your community to learn from their experience. Create a team including school teachers, therapists, a case management agency contact in your state, and anyone else who knows and understands your young adult with rare epilepsy.
We encourage you to lean on family, friends, patient organizations, and the broad rare epilepsy and DEE community to help you navigate this journey.
- Research and work with your state agency case manager to identify potential vocational opportunities and day programming options.
- Work with your child’s transition team at their school to finalize IEP/transition goals to ensure focus on skills needed for adult life.
- Complete the Caregiver Medical Transition Readiness Form. If ready to proceed, move to the next step below.
- Start the process of transitioning your child from their pediatric primary care provider and neurologist or epileptologist. Find adult medical providers and start your outreach to replace all of your child’s other current pediatric care team providers.
TIP: All patients will experience transitioning from pediatric to adult care after age 18, even if they have not yet transitioned to adult care providers. The healthcare sector changes, as well as healthcare insurance and the liability and scope of practice of many pediatric providers. Having a solid understanding of what this transition looks like and what you can do to prepare yourself and your child is the best approach to ensuring high quality care across the lifespan. Learning the adult health care system still applies even if your loved one’s medical team will not change. As your child becomes an adult, it is important to establish a primary healthcare provider. Internal medicine or comprehensive/complex care management providers (dually certified in pediatrics and internal medicine, known as “Med-Peds certified”) are two great places to start as you transition from a pediatrician to adult focused care.
- Create a Letter of Guidance that documents your desires and long-term plans for your child’s daily care, finances, medications, caregivers, housing, etc.
- Begin dialogue with immediate family members on goals/plans for your adult child’s future and family involvement in this process.
- Continue to monitor the waitlists for day programming and residential services that you are interested in.
- Contact your state disability agency to ensure all adult entitlements are in place. If your state has an adult disability registry, ensure your case manager knows the criticality of receiving any services that may be offered through these programs.
- Participate in informational sessions/presentations for services for adults with disabilities, often presented by local non-profit disability awareness agencies (such as The Arc) or centers for independent living.
- Address transportation needs and explore options.
- Complete annual guardianship report, as required by your state.
- If your child is receiving SSI, track spending and submit an annual SSI report, as required by your state.
- At the beginning of the last year of transition, begin moving into adult programs. Complete necessary paperwork for transition and develop overall strategy for transition.
- 3-6 months prior to aging out of educational services, finalize your child’s overall schedule, which may include day programming, vocational opportunities, volunteer options, and/or recreational programs.
- Begin to consider long-term housing options.
- Assess medical alert notification devices, if appropriate for your child.
Caregiver of Adults with LGS – Monthly Support Group Meeting
You will need to make a decision regarding the best age for you to begin receiving social security benefits. Consider the pros and cons for the parent and the child. It is very important for the parent to review his/her social security statement (info can be found on the Social Security Administration website).
Click Here to Download the Full C.A.R.E. Binder
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 05/13/25 (AM)