The Brown Family's Story: An Uncertain Future Without Medicaid

By Maya Brown

My name is Maya Brown. I live in Kentucky with my husband Mark and four children, Miles, Julian, Ruby, and Eliza. We also have three cats, Skye, Willow, and Athena. Our house as you can imagine gets pretty chaotic, especially because Miles, who’s a junior in high school, loves the drums. We’re also a household in motion; we lived in California and Ohio before locating to Kentucky last year for my job. I’m a genetic counselor for kids, parents, and adults, providing people with information and counseling to help them navigate genetic diagnoses. 

Julian is 14 and attends a magnet school, where he’s in the journalism track. The events of the last year or so have made him very interested in politics and he’s exploring that as a career. He also plays the saxophone and has some interest in getting involved in wheelchair sports, especially basketball. 

Ruby is in fifth grade and dances as well as participating in the Special Olympics. She does cheerleading and track and LOVES watching lyric videos on YouTube. She will sing along, but only if you pretend no one is listening; she can be pretty shy even though she has a good voice. 

Their sister Eliza just entered third grade and she’s a real outdoor girl. She likes to do what Ruby does and also just started Special Olympics, where she plays softball and is trying out cheer. She’s a huge Bluey fan as well. 

Julian has Marfan Syndrome, a connective tissue disorder that affects his aorta, heart, lungs, nervous system, and eyes. He’s very proud that Marfan Syndrome is part of his identity and has been involved in public speaking and events for fellow people with Marfan. 

Julian uses a wheelchair because he has low muscle tone. Growing up, he needed oxygen, feeding therapy, and physical therapy. He’s started to graduate out of these needs; he doesn’t need thickener for his foods anymore, which has been really great. He does see a lot of specialists and we’ve had trouble locating some services in Kentucky, such as the feeding therapy he could benefit from; we just can’t find a provider and that’s a problem for the health needs of our other children as well.

Ruby and Eliza, my adopted girls, both have Fetal Alcohol Spectrum Disorder—it used to be known as Fetal Alcohol Syndrome, but that term doesn’t really reflect how variably this type of brain injury can present. Ruby struggles with behavioral issues and it’s really tough to find the mental health supports she needs. She also has some trouble with tasks of daily living, and because she can have behavioral outbursts, she really needs 1:1 eyes on her and it can be challenging to supervise her sometimes when we’re going to the store or doing other things in the community. Ruby’s doctor told us that he predicts Ruby can live in the community with supports, but those supports come from Medicaid, and we worry they won't exist when she needs them due to the cuts.

Our family is the kind of family that you’d think would be eligible for Medicaid, but we’ve actually never been able to access it due to waitlists, like here in Kentucky we’ve been told that the Medicaid waiver program has a 10-15 year waitlist. We can’t even get a case manager to help us navigate the services we can get, and to help us find more resources. The system is really complicated. We have good private insurance that meets a lot of needs, but we do spend money on medical costs that simply aren’t covered because we want the best for our children, and they can vary wildly from month to month.

It's hard to live without this assistance, and I’m scared for families like mine all across the country who count on Medicaid. I see a lot of clients who need Medicaid, sometimes families who are getting a really scary diagnosis and finding out that a pregnancy or childhood is headed in an unexpected direction. Some of them are uninsured or they don’t have good insurance, and they’re being flung into a really complicated system without a lot of support, but Medicaid is really life and death for them. 

I’m also really worried for my children’s futures; in theory they will be eligible for Medicaid when they are no longer able to be on my insurance, but I don’t know what that will look like with all these cuts. I want my children to thrive and lead the lives they want to live. If Ruby and Eliza want to live on their own with some support through Medicaid, they should be able to do that, not be forced to live with us, or, worse, in an institution because they can’t access care in the community.

People sometimes forget that disabled children grow into disabled adults. Every kid deserves the world in childhood, and access to services that set them up for life, but you don’t stop being disabled at 19, or 21, or 24. You need these services to be available and as a parent it’s so important to me that my kids grow into adults who can make decisions based on what they want to do, not what they are forced to do by circumstance. 

Especially with Ruby and Eliza, I worry that lack of access to mental health care could be really disastrous for them. People with mental health conditions who can’t access consistent care are much more likely to end up in the system; they need care, not prison! They have so much potential, but if these resources get taken away from them and they can’t access Medicaid into adulthood, it’s so much easier for them to fall into trouble.