Share the Journey with Jeneva: Maya Brown-Zimmerman on the Independent Educational Evaluation

Maya’s daughter Ruby. [image description: A young Black girl with long, curly black hair wears pink sunglasses while she makes notes with a pen on a blue pad.]

Maya Brown-Zimmerman is an adult with a rare genetic disorder, parenting four kids with medical needs themselves. When she’s not handling school stuff, driving people to doctor and therapy appointments, taking classes herself (working towards a goal of a Masters in Genetic Counseling), and doing advocacy work within the aortic connective tissue disorders community, she loves HGTV and a good book.

Tell me about your family.

I’m married to my college sweetheart, Mark. We have four children: two boys and two girls. In our household we have the diagnoses of Marfan syndrome, autism, brain injury, and ADHD, among others. Prior to Covid we loved traveling and spending time with extended family. These days we’re exploring new games on the Switch, and spending as much time in our yard as we can.

Tell me about your child’s complex medical needs & disabilities. 

As I said I have four kids. In regards to this particular topic, my daughter is in kindergarten this year. She loves everything Disney, Descendants, Barbies, and playing outside. She keeps us all laughing with her facial expressions! She also has a brain injury from in utero. The disability has manifested itself in a variety of ways, including social communication delays, lack of impulse control, aggression, slower processing, and some executive function difficulties. She’s autistic as well.

Many families may not know they have a right to an Independent Educational Evaluation (IEE) for their child with disabilities. Can you explain what an IEE is and why it’s valuable?

Think of an IEE as a second opinion. If your child is on an IEP (Individualized Education Plan), you’re familiar with an ETR: Evaluation Team Report (in some districts it’s known as an MFE: Multi-Factored Evaluation). This is when the school evaluates your child in a variety of areas. It’s used to determine the need for an IEP initially, and then it must be done every 3 years (the triennial review). It can also be done more often, if needed. The whole IEP team--so including you, the parent--decide what areas to evaluate during the ETR/MFE. When preparing for my child’s ETR this time around, I specifically requested we examine pragmatic speech, for example, even though the speech therapist didn’t think it necessary. 

You can learn more about requesting an IEE at blogs like Wrightslaw, for example.

Why did you seek an IEE for your child? What were the circumstances?

We requested an IEE for my child for two reasons: 1) The ETR results were not what I was expecting to see, and 2) The ETR results would mean a major change to services. Before agreeing to such a change, I wanted a second opinion. If your child’s doctor were suggesting a surgery you weren’t expecting, or wanted to make a drastic medication change, you’d probably get a second opinion, right? School decisions are just as important. 

Do your homework and read more about the process and the pitfalls. You can find examples of special education letters for various purposes on the Disability Rights Education & Defense Fund here, which may help you draft your own.

The Brown-Zimmerman Family. [image description: A family of two adults and four children poses on a green lawn with trees in the background that are just beginning to leaf out. The girls wear matching light blue sailor dresses, and the boys wear athletic jackets. Maya wears a navy blue dress with narrow white stripes. Her husband wears a green shirt with a collar.]

How have you engaged your children in self-advocacy?

At a young age, I believe self-advocacy starts with having control over your body: being able to say no (“don’t touch me,” “I don’t want to do that,” etc.). We started explaining our kids’ medications to them around age 2-3: “This is your brain medicine, to help your brain be calm”; “This is your heart medicine, to help keep your heart strong”; “This is your poop medicine, to help you poop.” Obviously those explanations get more detailed as developmentally appropriate. 

We encourage them to ask questions at doctors’ appointments, and prep them for what to expect ahead of time. One of my kids had their first appointment at a pain clinic today, so last night I explained what kind of questions the doctor would ask, and I typed up answers in my child’s words to those questions, so that they wouldn’t feel put on the spot at the appointment.

At school, I ask my kids what is hard for them, and what they think would help. They don’t attend IEP or 504 meetings yet, but the older kids give input, and I tell them what I’m thinking about requesting and get their feedback on that. One of my kids also likes to give a class presentation about his rare disorder. He started doing that with me in first grade, but within a couple years moved to doing it entirely on his own. 

Self-advocacy is also about teaching my kids that no one is entitled to information about them (except their doctors, who need to know in order to best help them). If someone is asking why they wear headphones, or use a wheelchair, etc., my kids know they can answer the question truthfully, make up something ridiculous, decline to answer, or have me decline on their behalf.

How has advocacy given meaning to your life?

I started advocacy work at 13, following the death of a friend from our shared diagnosis. For myself, being able to advocate leads to better health outcomes. On a larger scale, I feel that I’m able to make an impact in my rare disorder community, whether that’s helping teach others how to self-advocate, or working with doctors to direct research, or lobbying for universal health coverage. I want a better world for my kids, one that will be easier for them to navigate because supports will exist, instead of having to be fought for.

If you could define advocacy in a single sentence, what would it be? 

Advocacy is using your lived experiences to affect change, whether it’s change on a small level (for your life, or your child’s life), or for a broader community.

[This interview has been edited for clarity and concision.]

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Jeneva & her son Rob [image description: A mom with short blonde hair wears a blue scarf & grey dress. Her son is seated in a wheelchair with an orange shirt & orange baseball cap.]

We hope you enjoyed this installment of Share the Journey with Jeneva, a recurring feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Castin, is currently a student at Middlebury College.