Transitioning to Adulthood With PCDH19 Epilepsy

When your child has significant health & support needs, every approaching transition can feel daunting, but the transition to adulthood is inarguably one of the most intimidating. For many in our community, the diagnosis of PCDH19 Epilepsy also comes with other comorbidities such as an intellectual disability ranging from mild to severe. While an 18th birthday is typically symbolic of more independence, many of our children will continue to require some level of support throughout their entire lives. The questions of what happens during this major transition time can be overwhelming, and it can bring on feelings of helplessness, fear, or even avoidance.

The Importance of Being Prepared

Karin Wells-Kilpatrick, mom of Kira (19), has recently gone through this transition period and graciously shared her perspective on the process.

“It all hits at once and it is kind of traumatic. There’s transitioning to adult doctors, SSI (social security), Medicaid services, school transitioning; there’s a whole bunch of stuff that comes all at the same time. I didn’t expect that, and it just opened up a whole new round of grieving. Maybe it’s not true for everyone, but my daughter has a more significant disability. You try to plan for the future, but thinking about all the things that may happen in the future is overwhelming.”

The Alliance believes that knowledge is power. With information & early preparation wherever possible, our hope is that some of those feelings of fear and helplessness can subside.

“Educate yourself. At least to have an idea of what’s coming. Planning before it comes makes you feel a little less out of control. Because feeling out of control on top of everything we’re already doing is not helpful. I guess if I would’ve mentally started thinking about some of the aspects of transition earlier, and started asking questions earlier, it wouldn’t have hit so much like a tidal wave.”

Because this process can feel isolating or overwhelming at times, it is suggested that you look into getting a case manager through your local center for individuals with intellectual or developmental disabilities. This person should be able to help you navigate some of the processes discussed below.

Guardianship/Conservatorship

One of the first things to consider when planning your child’s transition to adulthood is the topic of Guardianship or Conservatorship. While some states use these terms interchangeably, others distinguish them by attaching guardianship to medical/health-related decisions only, and conservatorship to financial decisions only. Guardianship/conservatorship is an area of consideration for our children who have a dual-diagnosis of PCDH19 Epilepsy and an intellectual disability.

When an individual turns 18, parents are no longer automatically able to make legal and medical decisions for their child with disabilities. This includes decision-making regarding healthcare, housing, food, finances, and other life matters. If your child will be unable to manage these areas of their life independently, you (or another appointed adult) will likely need to become their legal guardian. It is important to note, however, that a diagnosis of an intellectual disability does not automatically qualify your child for guardianship. Similar to special education supports in school, the courts take a “Least Restrictive” approach and require a judge to determine that your child does not have the capacity to care for him or herself in some way in order to obtain guardianship. If your child’s intellectual disability is mild and he/she is able to function mostly independently, this may not be an appropriate route for him/her. If that is the case, there are other support options to consider that may be a better fit (e.g., Special Needs Trust, Supported Living Arrangements, Power of Attorney, etc.). It is important that if you choose to get guardianship/ conservatorship, you start the process right before your child’s 18th birthday. If it is not processed until after they turn 18 and something were to happen (e.g., your child ends up in the hospital), you will not have legal authority to make his/her medical decisions.

Why should I consider Guardianship/Conservatorship?

• You gain full access to medical records & decision making authority in the areas of health care & living arrangements

• If someone tries to take financial advantage of your child, you & your child would have some legal protection.

How do I go about getting Guardianship of my child?

• This is dependent on the area you live in. Your easiest option is to google & get in touch with your local developmental disability center. This is sometimes housed under your state’s Department of Human Services, Department of Disability, or Department of Aging.

Education

K-12 Education

If your child has an Individualized Education Plan (IEP) through school and has an intellectual disability, he/she is likely eligible to continue receiving special education services through his/her 22nd birthday. If your child receives a standard high school diploma, he/she would not be eligible for these additional years. These final years of school should be utilized to work on your child’s transition IEP goals. These transition IEP goals should be determined and worked on starting at age 14 or 16 depending on the state you live in. These goals should be appropriate for your child’s individualized needs related to training, education, employment, and independent living skills where appropriate.

Post-Secondary

For some of our children with PCDH19, a typical college experience may be possible with the right supports in place. However, it may also be possible for children with intellectual disabilities as well. In recent years, there has been a push for access to post-secondary education for people with intellectual disabilities. There is a national initiative called “Think College” that is dedicated to developing & expanding inclusive higher education opportunities for students with intellectual disabilities. These opportunities range from 1-4 year programs and focus on academics, social skills, career development, and independent living skills.

Supplemental Security Income

Supplemental Security Income (SSI) is a federal program under the Social Security Administration that many people with PCDH19 Epilepsy may qualify for once they turn 18. If you applied when your child was under 18 and he/she was denied, it is worth reapplying because once a person is eligible as an adult, only their personal income & assets are considered, regardless of their parents’ income.

If eligible, your child will receive a supplemental payment each month. Though there are limitations on how much your child is able to earn, receiving SSI does not prohibit him/her from working entirely. If you think your child may be eligible, you should start the application process a few weeks before your child turns 18. You can read more & apply here: https://www.ssa.gov./benefits/ssi/

Transition of Care

Another item of consideration when your child turns 18 is his/her transition of care from a pediatric to an adult neurologist, as well as other specialists. When your child becomes an adult, seizure concerns are likely still present, yet he/she is typically unable to continue being seen by their pediatric specialists. The Child Neurology Foundation has great resources on this transition.

Medicaid

To learn more about and apply for Medicaid, you will need to contact your state. State contacts can be found here.

Health Insurance

When your child turns 18, he/she may be eligible for Medicaid if he/she has first qualified for SSI (Supplemental Security Income). Your child can stay on your insurance plan until 26; however, if that is not an option for your family or your child is over the age of 26, Medicaid may be an option for his/her medical insurance.

Waiver Programs

In addition to qualifying for health insurance under Medicaid, your child may also be eligible for additional waiver programs after he/she turns 18. Each state varies slightly with what programs they offer, but the best way to learn more about what is available in your area is to search “Home & Community-Based Services” with your state’s name. Some possible opportunities under these waiver programs include life skills training, supported employment options, respite care, day program services, supported living arrangements, and others. It is important to look into these early, as many states have waiting lists.

Employment

Ticket to Work

If your child has job skills, but needs support finding and holding a job, he/she may benefit from the Ticket to Work program. Provided by the Social Security Administration, the Ticket program is free and supports career development for individuals with disabilities who want to work. If your child qualifies for SSI (Supplemental Security Income), he/she would also qualify for The Ticket program.

Supported Employment

Many states offer supported employment options under their Home & Community-Based Services (HCBS) Medicaid waivers. If this is something you think your child is capable of and would benefit from, you should go through your state’s Medicaid process to learn more.

The Emotional Toll

It would be amiss to ignore the emotional toll that this transition period can have. For your child’s entire life, you hold on to the power of hope and focus on what he/she can do, but during these transition processes you will often find yourself forced to take the opposite approach. In order to show that your child requires these support services, you have to prove that he/she is unable to function independently. It is normal for this experience to come with some level of grieving as it is a reminder of the deficits you have not previously needed to focus on. During this time, it is important to remember the many years of growth and progress your child has already made.

While these processes can feel disheartening at times, once in place, they are truly meant to help your child live a fulfilling adult life as independently as possible. Your child’s 18th birthday is not the finish line. If there are goals you have for your child that he/she hasn’t met yet, there is still time. There will always be growth, so with that, there should always be hope.

Originally from Illinois, Sophie has lived in Denver, Colorado for the last two years and works as a special education teacher. She graduated from the University of Missouri with her Bachelor of Science in Special Education, and completed her Master's Degree at Vanderbilt University with a specialization in Severe & Profound Disabilities.

Sophie has two brothers, one of whom has another type of rare epilepsy called Dravet Syndrome. Her brother, who lives with multiple comorbidities, has inspired her dedication to support individuals with disabilities and their families in various ways.