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.