Ages 17-18
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?”
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.
TIP: This is an important year as there may be tasks that must be completed by the time your child reaches age 18. You may encounter issues if certain tasks are not completed this year. Seek advice from medical, legal, and financial professionals to ensure you and your family are prepared.
- Review the Caregiver Assessment on Medical Transition Readiness.
- Have your annual medical transition discussion with your child’s primary care physician and neurologist or epileptologist. Reconfirm when your child will age out of their practices and the hospital in your current healthcare system to ensure policies you may have previously confirmed have not changed. Some patients will age out at 18 years old. If this applies to your child, you must complete the medical transition before your child’s 18th birthday.
- Continue the process of working to identify an adult primary care provider and adult neurologist or epileptologist for your child. This is especially critical this year if your child will age out of their current providers’ practices at age 18.
- Work with your child’s neurologist or epileptologist to complete the Epilepsy Living & History Form.
- Identify professionals needed to allow you to complete guardianship and/or power of attorney paperwork (physician, social worker, and clinical psychologist).
- Complete guardianship and/or power of attorney for financial and medical decisions. You will not be able to petition the court for guardianship until the date of your child’s 18th birthday. Forms will expire, so you may not be able to complete them more than 180 days in advance. This can vary by state.
- Begin to tour post-high school day and residential programs, and get on waiting lists if necessary, for when your child ages out of their school system (this varies state to state).
- Organize all of your child’s medical records and other important documents (social security card, birth certificate, IEP, behavior plans, trust documents, SSI papers, guardianship papers, care plan, etc.)
- Complete a neuropsychological evaluation, behavioral testing, and any other tests required for guardianship, SSI and/or day program placement.
- If your child has private insurance, review the policy regarding your child’s coverage after the age of 18. Under the 2010 Patient Protection and Affordable Care Act (“Obamacare”), private insurance policies typically cover children under your policy until age 26, but with proof of disability your child can remain on your policy after age 26.
- If your child already receives Medicaid, be aware that some programs change at age 18.
- Setup respite services in your home to begin acclimating your child to support being provided in the home by someone other than a parent or family member.
- Work with your child’s educational team (and your state disability/vocational service agency) to begin to understand potential vocational opportunities and job coaches.
- Find out if there is an age cutoff for any of the therapies your child receives. If so, get recommendations for providers working with adults.
- Keep detailed notes of your child’s seizure activity and care requirements throughout the day. Documenting their multiple daily needs can support your SSI application and waiver programs.
- Check with durable medical equipment vendors and home care agencies to see if there are age cutoffs, and if so, determine what agencies can continue to provide the necessary care.
- If required by your state, begin the Certified Family Home process if your child will be receiving residential funding for in-home care.
- For military families - make sure your child has a military ID card, that it is updated as service status changes, and that you add the disabled dependent to your military survivor benefits.
- Apply for SSI and Medicaid the month after your child turns 18 years of age, if applicable. If previously on SSI, complete phone interview.
TIP: If you apply for SSI during your child's birthday month, it will still be considered the parent income and therefore your request will be denied. Check the Compassionate Allowance List for SSI because if your child's diagnosis is on that list it can speed up the approval process. {Note: As of May 2025, Lennox-Gastaut Syndrome is not on the Compassionate Allowance List, but we are appealing that decision in hopes that it will get added.}
- Set up a joint bank account to hold and track SSI payments. Ask your bank to help you set up a Representative Payee Account, where the account is for the child but actually has the parent name on it. This is a very specific type of account needed for SSI payment. Begin to track SSI spending as required by your state.
- If your child does not already receive Medicaid, consider applying after obtaining SSI. In most states, if you are an SSI recipient, you may be automatically eligible for Medicaid.
- Contact your state’s disability agency - ask your school for a referral to determine eligibility. If approved, work to secure funding and programming. Inquire if agency has transition coordinators on staff.
- If your child qualifies for adult services through your state, consider whether you would qualify as a primary care provider and should be compensated (if that is an option in the state where you live). Consider adding another adult in household (could be a sibling or grandparent), in addition to parents, as a primary care provider.
- Share guardianship paperwork with schools, health care providers, etc. Also add a copy to your estate and financial files.
- If you have a son, he must register for Selective Service, regardless of disability. He may register at the post office or online at www.sss.gov.
- If you have a daughter, her primary care physician may recommend for her to have a gynecological exam. If so, arrange with a gynecologist who understands patients with intellectual disabilities and DEEs.
- Consider getting on a housing waitlist. Section 8 waitlists are long and can be up to 10+ years. This includes Adult Family Homes (A.F.H.s) which are residences where three or four adults who are not related to the operator reside and receive care, treatment or services that are above the level of room and board. They adhere to state regulations and are built or modified with accommodations including but not limited to wheelchair ramps, wider doorways, and lower countertops.
- Review the Caregiver Assessment on Medical Transition Readiness.
- If still needed, continue the process of identifying an adult primary care provider and adult neurologist or epileptologist for your child.
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)