Our Medicaid Story

Cuts to Medicaid will devastate poor and disabled people in America. Please call your representative THIS WEEK and tell them you oppose these cuts!

My husband and I happen to both be carriers for a disease so rare that they don’t even have a test for it. Our only child was born with a rare disease of the brain. It’s progressive, genetic and terminal. She’s multiply disabled.

When she was not even a year old, I remember the relief of someone from early intervention (a federal program funded by the Individuals with Disabilities Education Act) coming our home to assess that she would qualify for disability services. A friend, whose son is also multiply disabled, helped me begin the process of applying for Medicaid. My friend has a Ph.D., I have a Ph.D., and I still remember how confusing and complicated the process was: it took months and months of paperwork, and visits to doctors offices and government offices. But when Lucia was about a year and a half, because of her level of medical need, she finally qualified for Medicaid.

What a relief it was to have a skilled nurse around in the middle of the night, when despite her feeding tube that was supposed to help ease her digestive struggles, she was vomiting bile and screaming in pain! What a gift it was to know that when I was at work, there was a skilled nurse present in our home in case she had a seizure!

You see, she couldn’t just go to daycare like any other child. They wouldn’t take her.

Disabled children like my daughter don’t fit into the systems we have for typical children, so our federal and state programs make accommodations, so that disabled children can access things like education and healthcare. I actually don’t think this is what justice looks like. I think schools and hospitals and the world would genuinely be a better place for all of us if everything was designed to be accessible to disabled people. So many of us will become disabled some day or know some catastrophic health incident, and disabled people have so much wisdom: I believe their access can multiply all our access.

But while we’re waiting for that reality and trying to change in the world, Medicaid seriously fills in the gaps for disabled people.

My daughter somehow grinning through a recent hospitalization. Photo mine.

For example, my daughter sees about three specialists at the hospital every month and she’s hospitalized due to complications of her disease, sometimes for weeks at a time, about three times a year. People like Elon Musk and Donald Trump know that private insurance companies don’t want to cover people like my daughter because they’ll actually lose money. So when our private insurance company through our employer routinely denies medical expenses—including in-home private duty nursing, that Lucia needs to sleep and attend school safely, let alone stay out of the hospital—secondary insurance though Medicaid steps in to fill the gap.

In the same way that Lucia receives accommodations at school to learn, because her eyesight is poor and she can’t walk or talk, and she wouldn’t be able to access the regular curriculum without support from a paraprofessional or adapting that curriculum to her needs, you can think of Medicaid much like an insurance accommodation for disabled people. It’s not a benefit. It’s an accommodation for people private insurance doesn’t want to cover. It makes insurance accessible to disabled people and poor people.

Because private insurance is set up for healthy people and for people with typical bodies, for whom doctor’s visits and visits to specialists are minimal, even anomalies, private insurance doesn’t want to pay for equipment for disabled people, nurses in the home, or things they often deem extraordinary. But they're not extraordinary for people like my daughter. They’re things that the brightest doctors in the world have deemed medically necessary. They’re things that keep her alive.

A table in Lucia’s room stocked with medical equipment she uses everyday.

This is why even people like my family, who have good private insurance through our employers, still need secondary insurance through Medicaid for our disabled kids. Lucia needs thousands of dollars of respiratory equipment for daily life, nurses to accompany her to school and care for her in our home, and these vital supports are not affordable for families America, even for people like us with good jobs and private insurance. If you’ve ever been burdened by a temporary health scare and struggled to foot the costs of those bills, just think about what it’s like to have an ongoing health scare for over ten years, in a system that doesn’t want to pay for your insurance. And even when you’ve paid up for the most comprehensive plan that your employer offers, you’re still regularly told they won’t cover things you need.

But lest I make Medicaid sound too ideal, you should know that many poor families and families with minimal private insurance or who rely on Medicaid as their primary insurance find that few doctors will even see patients who are on Medicaid. It's not financially viable for their offices. They lose money on these patients. So these patients don’t have many choices in terms of where they get their care. They often have long wait times for services, but these are people who are both poor and disabled. And these are just the people who are actually able to get on Medicaid. There are so many people still waiting for services who need them, because the program is underfunded. There are more people that qualify and need it than can access it.

So make no mistake, I am telling you now as clearly as I can that if Medicaid is gutted, it will be poor and disabled people who will suffer. And they won’t just struggle, they will suffer and die.

I know this, because the level of Medicaid my daughter qualifies for identifies that her needs are at the level of needing to be in a nursing home facility. But family advocacy and the adoption of the Katie Beckett waiver in the 1980s made it possible for children like her to live at home safely. This program actually makes fiscal sense, too, because it keeps kids out of the hospital, where the resources they need cost more at an institutional level than they do at home and also take hospital space away from others who need those resources. But most states (only 24, in fact, do) today still don’t even offer such a waiver. In fact, there is tremendous inequity across the way states currently fund their Medicaid programs in the United States.

And so, once again, the poorest disabled people in the poorest states will suffer the most if cuts are made to Medicaid across the board.

My husband and I are up at night trying to calculate the costs and plan for the worst. If these cuts come to fruition, we will struggle to pay our medical bills, but one of us will also likely need to quit our job and try to stay up all night to act as a nurse for our child. But we’re not nurses, so her care will necessarily suffer, because she needs a skilled nurse by her bedside. If the Department of Education revokes protections for disabled students or if 504 is toppled, our daughter may not even be able to go to school, because she needs a nurse and she needs classroom accommodations and paraprofessionals to support her learning. So even if I could stay up all night, how could I also care for her during the day, let alone educate her, as well?

Unfortunately, I also have to worry that in this current political climate, all this truth telling will just further embolden people to question the quality and validity of her very life. But I’m so very desperate, so that’s just a chance I will have to take.

Lucia, with her dad, on her 11th birthday. My photo.

And if you know us and you know her, you can actually see that she’s lived 11 years despite this terminal diagnosis that predicted she would die in early childhood. Thanks to the village that is Medicaid, to your tax dollars, to schools, doctors, and nurses, she’s actually thriving. But as much as it pains me to say it, without all those supports, I feel certain that we will lose her. She will either lose her life to preventable complications of her disease, or without the equipment and care she needs to survive, we will be forced to give her up to live in an institution, that is, if there is one that will take her after all these supports are dismantled.

I hate that my family is so incredibly vulnerable. I feel helpless that I can’t protect, let alone ensure, my daughter will have what she needs to survive in this country. We have so little we can rely on for certainty in her incredibly fragile life.

So, please urge your representatives not to take away my daughter’s Medicaid.

I know we are all struggling to trust politicians and lawmakers and systems at this very moment. We may worry that they may not listen to us.

But the fact that you are listening to me—that gives me great hope.

It gives me hope that my family is not alone and that with our care for one another, we can advocate for and create a better future of all of us. In fact, 77% of people in the United States view Medicaid favorable. So you are the very people that our representatives need to hear from, because they represent you, and they need to know that you want to preserve protections like Medicaid for poor and disabled people.

Please call your representatives in the House and ask them oppose any cuts to Medicaid.

Tell them they are misrepresenting you and the majority of this country if they make those cuts. Tell them those funds should continue to help poor people and disabled people.

Tell them not to cut my daughter, so that she suffers or her life is cut short. Tell them, instead, to let her live.