With the constant care demands of your loved one with Dravet syndrome, it’s understandable that transition planning might not even be on your radar. Transitioning to adulthood is a complex, often overwhelming, and deeply emotional process. The journey can look very different from one household to the next, as each young adult’s abilities, needs, and future goals vary. What works for one family may not be suitable for another, making this path both highly personal and unique.
To assist you in navigating this process, the Dravet Syndrome Foundation (DSF) has partnered with UCB and the Lennox-Gastaut Foundation to create the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder – a comprehensive and user-friendly tool designed to help you stay organized throughout the transition.
The C.A.R.E. Binder is an interactive, fillable PDF that enables you to enter, download, save, and print essential information. It helps you collect and organize critical details needed to build a long-term care plan for your loved one with Dravet syndrome, as your schedule allows. It can serve as a valuable reference, guiding you through each step of the transition process and helping to ensure you don’t miss any critical details along the way. Additionally, the binder makes it easy to share this information with siblings or other adults involved in your loved one’s care, ensuring everyone is on the same page as you plan for their future.
It’s crucial to understand that once your child turns 18 they will be legally considered an adult and will have the right to make their own decisions, even if they are not capable of doing so safely or effectively. By planning ahead, you can avoid unnecessary delays, gaps in care, or legal and financial obstacles, giving you and your loved one greater peace of mind as you navigate this important journey.
Over the next four weeks, our blog series will guide you through the first steps of transition planning and help you get prepared. As you begin this journey, we encourage you to take a proactive approach to the transition process. Doing so can bring much-needed clarity and reduce stress, helping you feel more confident and prepared as you support your loved one in their path to adulthood.
To start, we suggest you review the items listed below. These initial steps will give you a sense of what lies ahead and helps you begin building a roadmap tailored to your family’s needs. All of the specific assessments, guides, and forms listed below are linked within the C.A.R.E. Binder.
Where do I start?
Start by downloading the C.A.R.E. Binder and take a moment to review the long-term care planning suggestions by age, which are also outlined below. The goal in reviewing this timeline is not to overwhelm you, but to give you a clearer understanding of the tasks ahead and help you map out a comprehensive plan for your loved one’s future care.
Age 13
- 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.
Age 14
- Have your annual medical transition discussion with your child’s primary care physician and neurologist or epileptologist.
- Stay in contact with DSF to get connected with other Dravet syndrome families starting this transition process.
Age 15 (Freshman Year/Grade 9)
- 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 DSF to learn ways to get connected with other Dravet families starting this transition process.
Age 16 (Sophomore Year/Grade 10)
- 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.
- 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.
Age 17 (Junior Year/Grade 11)
- 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.
Age 18 (Senior Year/Grade 12)
- Apply for SSI and Medicaid the month after your child turns 18 years of age, if applicable. If previously on SSI, complete phone interview.
- 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.
Age 19-22 (Transition Services)
- 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. - 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.
Don’t miss next week’s blog post, where we’ll explore the next steps in greater detail!
