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 ca