My Church Can’t Possibly Pay for My Child’s Needs

THIS YEAR, REPUBLICAN House Speaker Mike Johnson pushed through a budget resolution that calls for cutting at least $880 billion over 10 years from funding that includes Medicaid. A number of Republicans see these cuts as damaging to voters in their districts. Johnson’s job, however, is to advance the budget set forth by the Trump administration — a budget aimed at increasing spending on border security and deportations while also extending the tax cuts from the first Trump administration.

Those 2017 tax cuts saved households with incomes in the top 1% and the top 5% three times more than they did for those with incomes in the bottom 60%, according to the Center on Budget and Policy Priorities. The Trump administration wants Medicaid to foot the bill, effectively stealing money from disabled children to give tax cuts to billionaires.

Medicaid is widely popular, but we can get so caught up in rhetoric and budget numbers that we fail to understand it. Broadly known as a joint federal-state health insurance program for low-income and disabled people, Medicaid also covers services for 47% of all disabled children in the United States. My daughter Zoe is one of them.

So is Mia, daughter of Adam and Joy Beth Crownover, who gave me permission to tell their story. Mia was born with lissencephaly, a condition in which the brain is smooth where it should be wrinkled. Many babies like Mia don’t live past their second birthday, but Mia is already 2.

Mia delights in her bright orange teething toy, and she is constantly babbling. She loves people and her cozy bed, illuminated by the glow of mood lighting and five stuffed koalas. (Koalas are a mascot of sorts for lissencephaly because koalas, too, have smooth brains.)

Zoe is more into pop music than animals nowadays, loving Taylor Swift, Olivia Rodrigo, and the Wicked soundtrack. She also has cerebral palsy, requires full-time care, and uses a hot-pink power wheelchair. When we adopted Zoe, we knew she would live with us long-term and receive care at home. Medicaid makes that possible.

Mia and Zoe both receive their services through their state’s Medicaid waiver program. These programs provide alternative ways to qualify for Medicaid, allowing children to access medical coverage beyond what private plans can provide. For example, most insurance plans cap physical therapy sessions at 20 per year, but due to cerebral palsy, Zoe needs two sessions per week to address her movement needs. Her Medicaid waiver program also covered the tricycle that strengthens her legs and core, as well as the tray for her new power wheelchair that she can use like a desk at school.

Medicaid waivers cover more than that, though. Home- and community-based services such as home health care are crucial to keeping disabled children at home rather than in institutions.

In addition to being a mom of six, I’m the community engagement associate for the nonprofit Little Lobbyists, working primarily to support families like mine and help us connect with one another. I was a special education teacher in public schools in Texas and North Carolina. After training special educators for Teach For America, I earned a master’s in special education and researched educational inequity’s impact on disabled students. I know what is needed to raise our kids.

Waiver services provide regular specialized care for children as well as respite services to allow families a break from caregiving so they can give their best to their children. All the kids mentioned in this article receive in-home caregiving services paid by Medicaid.

Xiomara was born with multiple life-threatening realities. Her name means battle-ready, and she has fought her way to being 10. Her mom, Elena Hung, founded Little Lobbyists to advocate for health care, education, and services for children with medically complex needs and disabilities, because children like Xiomara, Mia, and Zoe matter.

“If I could, I wouldn’t change a thing about Xiomara, but I would change many things about this world so that it might be worthy of her,” Hung declared at a virtual Medicaid rally in March.

Medicaid help doesn’t come right away. Mia was born in January 2023. Her parents received a primary diagnosis in June 2023 and applied for Medicaid immediately; they weren’t approved until April 2024, doing without needed services until the process was complete.

Mia’s wait was short compared to some. The Medicaid Innovations Waiver, also available in North Carolina, serves children and adults with intellectual and developmental disabilities who want to stay in their home community, rather than a residential facility. We’ve applied for that waiver for Zoe, but the waitlist is about 15 years. She will be nearly 30 before she’ll have access, assuming there are no cuts to Medicaid before then. The waitlists, common across the country, are due to underfunding. I personally know five families who have moved to a new state to get better waiver services.

Every state chooses how to run its Medicaid programs, including whether to expand them with federal funding. Because home- and community-based services are optional Medicaid services with vague guidance from the federal government, guidelines vary significantly from state to state. Services for various disabilities can differ by state as well, so the best state for one family might not be ideal for another.

Before Medicaid and even “with incredible, top-tier health insurance, we spent something like $15,000 out of pocket that first year, spanning seven hospitalizations for Mia,” Joy Beth Crownover said. Upon approval of North Carolina’s Medicaid waiver for medically complex children, Mia immediately had access to in-home therapies, formula, and equipment, including a stander, medical stroller, bath chair, and activity chair.

Now “even with Medicaid, even with primary insurance, we pay $350 to $500 each month on her over-the-counter medications, compounded medications not covered by insurance, and therapy equipment. This doesn’t include insurance premiums or any additional therapies,” Crownover said. These expenses are typical for most families I interviewed or with whom I work.

If we care deeply about children and families, then protecting these programs is key. I’m a Christian. I hear some Christians argue that the church is supposed to take care of the needs of kids like ours, but how can the church pay for the millions of dollars necessary to pay for one disabled child’s worth of surgeries, hospitalizations, equipment, round-the-clock monitoring, and home and vehicle modifications to make living at home possible? Given that institutionalized care is more expensive than home- and community-based care, how can the government afford to pay for that when Medicaid is already underfunded?

If federal Medicaid funding is cut, as the current administration plans, states will have to make tough decisions. Some people currently receiving Medicaid will lose coverage. No state has released plans to mitigate the funding loss.

In April, I spent a week protesting Medicaid cuts. It was the same week that House Republican leadership pushed through a budget resolution that allows them to cut taxes for the wealthiest by more, trim spending by a little less, and push off the consequences by greatly increasing the federal debt. I’m not giving up, though, because I believe we can be heard. In 2017, Little Lob-byists was founded in the fight for the Affordable Care Act, endangered at that time as Medicaid is now. We saved the ACA then, and I maintain that we can save Medicaid now — even if it requires legal action in the courts to do so.

If you do not have your own Medicaid story to tell your representatives, then borrow mine or share this article. Because misinformation is rampant and these stories are true, spread the word to others so they will know this information. Call your mom in Florida and tell her what you’ve learned. Some of us shy away from talking politics, but telling stories is something we all do. I believe in our country, and I believe the power of stories can change hearts, minds, and laws.

As a parent, it is exhausting to fight for my child’s health care every few years because people think Medicaid has too much or that people like us do not deserve the care we need. When cuts are proposed, though, I am mindful that all home- and community-based services are optional Medicaid services, so the help we receive through our waivers is the most endangered.

“Any cut to Medicaid would be devastating,” Crownover said, “We’ll lose everything that keeps Mia being Mia.”