Questions and answers about guardianship and Rett

Parents of a child diagnosed with Rett syndrome face all the milestones that parents of a typically developing child face. While some can be seemingly normal, and even joyful, many can be quite painful. One milestone that begins to weigh on parents’ minds and hearts quite early on is their child turning 18 years old, when young people legally become adults in the eyes of the government and the law. At this point in time it's important to undergo the process of guardianship, so caregivers can continue to do what’s necessary to support their loved one.

My own daughter, Jilly, recently became an adult. But well before her 18th birthday our family had many questions about what guardianship entails and what we’d need to do to make sure we could continue giving Jilly the support she needs.

Unfortunately there is no single set of guidelines or procedures that Rett caregivers can refer to when their loved one makes the transition to adulthood and guardianship becomes necessary. However, I hope that what I share here about my experience, along with advice I gathered from a few other Rett parents, will provide helpful insight. We want your experience to be as smooth as possible and for you to know that we see you, we hear you, and we understand your questions and uncertainties. I also want you to know that most of the time the worry about the process is worse than the process itself.

Here are some common questions about the transition to adulthood and guardianship with answers from Rett caregivers.

Is it okay to grieve about my child becoming an adult?
Yes, absolutely. This was the toughest milestone to date for me emotionally, in particular the time leading up to Jilly turning 18. I had a feeling of relief once I realized she is the same sweet girl that she was before she became an adult.

Emilie, mom of 20-year-old Anna Cate, shares: “It is 100% okay to grieve this process. It is hard and it feels like another punch to the gut in our world.”

It is important to allow yourself to feel whatever emotions you are feeling.

When should I begin the process of filing for guardianship?
Katie, mom of 18-year-old Abby, advises to start early. “The day your child turns 18 they are considered to be an adult, and you can no longer make decisions for them unless you have guardianship in place,” she says. “There is no grace period.”

Regardless of where you live, the majority of people recommend beginning the process at least one year in advance.

How do I figure out the process to be granted guardianship?
You may not know it, but you are surrounded by people and institutions that can give you advice about the guardianship process. For me the most helpful resource by far was other parents who had gone through the process in my state of Massachusetts. They shared their experiences with me and helped our family prepare for and navigate many elements of the bureaucracy and paperwork that are essential to getting guardianship processed and finalized.

Jilly’s school was helpful with identifying when to begin thinking about guardianship and then nudged us when it was time to take action. The classroom teacher, who was familiar with the process, connected us with Jilly’s children and transition service coordinator from the Massachusetts Department of Developmental Services. She was instrumental in pointing us in the right direction, and she regularly checked in with us throughout the process.

Each state has its own transition to adult services protocol, and some have transition toolkits and/or transition guidebooks that you can find online. I recommend starting with an online search of these terms along with your state name — because every state is different!

Can I hire an attorney to file guardianship for me?
If your budget allows for it or if your child has access to funding, hiring an attorney takes the bulk of the work off your plate. An attorney helps streamline the process and keeps you on track, ensuring all paperwork is done in time. An attorney will typically spend between six and 10 hours completing paperwork, filing court documentation, meeting and communicating with you, providing relevant parties with required notices, and attending the hearing.

“Do your research when hiring an attorney,” says Emilie. “You will want to find someone who specializes in guardianship or, better yet, find someone who has personally gone through this.”

What is the hearing like at court?
Due to COVID, my husband and I participated in our court hearing via Zoom. It was quick and easy, lasting no more than five minutes. This is usually the case, since guardianship for someone with Rett syndrome is almost always straightforward and never contested.

Leann, mom of 23-year-old Mya, shares: “We walked into the courthouse with our paperwork in hand, including a letter from us to the judge. I feel like the personal letter about why we wanted guardianship of Mya helped us to be seen first and granted guardianship within two minutes.”

The emotional turmoil leading up to the hearing is by far much harder than the actual day; I felt a sense of relief once it was done.

Can my child still see her pediatrician or go to a pediatric hospital once she is an adult?
Every situation is unique. It is important to ask questions of your clinicians and medical institutions early so you are prepared. Jilly’s pediatrician told us she will see Jilly until she’s at least 25 years old. Katie reports that her daughter, Abby, will be able to see her pediatrician until she is around 21 years old. Pediatric hospitals that have designated Rett programs will see patients at any age. However you never know when you might find yourself in an unexpected situation with your loved one’s medical care, like this Rett father did, so make sure you talk to your doctors.

How does adulthood affect medical insurance for my child?
Once again, it is important to not make assumptions and ask as many questions as you have. Every policy, state, and situation is different; some policies will change once your child turns 18 while others won’t change until your child turns 21 or 22 or 26. Be sure to talk to your insurance provider, and look into state Medicaid programs as well as your state’s version of what Massachusetts calls the Department of Developmental Services for guidance for your child.

Are things different once you have an adult child?
After the court hearing I wasn’t sure what my emotions would be, but I was pretty sure something would feel different. I am happy to report that nothing has changed mentally. I know that Jilly is still my daughter, whom I love so very much and will care for no matter her age. After the hearing, Jilly and I took a nice walk together and I breathed a sigh of relief.

“It has been two years since I became Anna Cate’s legal guardian,” says Emilie. “I carry the documentation in my wallet, and, besides that, nothing has changed. She is still Anna Cate and I am still Emilie. I continue to love and support her just like I have been doing for the last 20 years.”