As potential Medicaid cuts loom over millions of Americans, parents of children with severe disabilities are trying to grapple with what life might look like without the health care program.
“If we lose it, it will be utterly devastating,” said Lindsay Latham, of Springfield, Virginia. Her 10-year-old son Calvin has polymicrogyria, a rare brain malformation that affects his speech, his mobility and the way he eats and drinks. He also has epilepsy.
Calvin’s Medicaid covers tens of thousands of dollars-worth in care and necessities each year that neither his primary or secondary health insurance plans will cover, Latham said.
His medications, the adaptive stroller Calvin uses to get around, the tablet he uses to communicate, his ER visits, the caregiver who helps him when he’s not in school — it’s all covered with the help of Medicaid.
“He needs assistance with feeding. He needs assistance with drinking. So, he really needs day-to-day hands-on care, and Medicaid provides that for us,” Latham said.
Across the Potomac, a full-time nurse takes care of 18-year-old Claire Smith, at her family’s home in Northwest D.C. seven days a week.
Claire was born with an extremely rare duplication of chromosome 2.
“She has very significant medical issues. She has asthma, autism, part of her brain is missing,” her mother Jamie Davis Smith told News4. “She has kidney problems. You name it.”
Jamie Davis Smith
Jamie Davis Smith
Despite those challenges, Davis Smith said Claire has a great quality of life due in large part to Medicaid, which covers the cost of her nurse, her wheelchair and other equipment she needs to survive on a daily basis.
“She’s really happy. We love being around her. She’s popular in the neighborhood. Everybody knows her, waves to her,” she said.
Davis Smith said she and her husband would do everything they could to keep their daughter at home if she loses Medicaid. But caring for her around the clock wouldn’t likely be feasible without a nurse.
“It really takes two people to take care of her. Even if you need to go to the bathroom or boil water for dinner, somebody still needs to be watching her at all times,” she said.
“She might survive. But she wouldn’t be thriving.”
-Jamie Davis Smith
“One alternative is that Claire would be in an institution or a nursing home, which is not, not a nice place to live for anybody, let alone, you know, an 18-year-old young woman. She’d probably spend most of her day in bed, not be able to go to school. Again, she might survive. But she wouldn’t be thriving.”
Calvin and Claire are among more than 10 million adults and children with disabilities who have Medicaid for critical medical services and specialized care.
An important note to this story before continuing: My son, Clark, also benefited from Medicaid for about two years. He was born with esophageal atresia, cleft lip and palate, a heart defect and numerous other anatomical differences. When he was 2, he was diagnosed with autism.
Before we were able to get Clark into a full-time program for autism, he was able to have an in-home caretaker through Medicaid for the better part of a year. Day care wasn’t an option because of his complex feeding issues.
The struggle to get basic needs met is a common thread in the disability community. Now, talks of Medicaid cuts are adding to the stress families feel on a daily basis.
“All of these folks are already rolling a boulder up a hill every day to try and hold things together, and the idea of cutting [Medicaid] … is catastrophic, absolutely terrifying and literal life and death concerns for our folks,” said Lucy Beadnell, director of advocacy for The Arc of Northern Virginia, a branch of the national nonprofit that helps people with disabilities.
Beadnell and other disability advocates say Medicaid for people with disabilities is at risk if Congress goes through with the House GOP’s plan to cut $880 billion over 10 years from the Energy & Commerce Committee, which oversees Medicaid, Medicare and the Children’s Health Insurance Program known as CHIP.
President Donald Trump supported the budget resolution the House narrowly adopted on Feb. 25, an important first step in advancing his legislative agenda for major tax cuts and immigration enforcement.
Trump said on Fox News on March 9, “I’m not going to touch Social Security, Medicare, Medicaid. Now, we’re going to get fraud out of there.”
However, the nonpartisan Congressional Budget Office (CBO) said there’s no way to meet the budget goals outlined in the resolution without slashing hundreds of billions in Medicaid spending. Medicare is believed to be off-the-table for cuts.
House Speaker Mike Johnson has echoed the president’s comments about targeting fraud.
“Medicaid is hugely problematic because it has a lot of fraud, waste and abuse,” Johnson said. “I think it’s $50 billion a year in fraud alone in Medicaid. Those are precious taxpayer dollars. Everybody is committed to preserving Medicare benefits for those who desperately need it and deserve it and qualify for it. What we’re talking about is rooting out the fraud, waste and abuse.”
Johnson’s office cited a 2023 report from the Centers for Medicare and Medicaid Services that the “improper payment rate” under Medicaid is $50.3 billion. But the report states the majority of errors weren’t fraudulent.
“Of the 2023 Medicaid improper payments, 82% were the result of insufficient documentation,” CMS wrote. “These payments typically involve situations where a state or provider missed an administrative step and do not necessarily indicate fraud or abuse.”
“We have decades of data and studies that show Medicaid operates on a very lean budget with very, very little waste fraud and abuse,” Beadnell said. “For perspective, Medicaid caregivers in Northern Virginia that are expected to do really complex lifting, care, behavior supports to people with disabilities, make just over $17 an hour with zero hours of paid vacation each year, and, at a maximum, five paid sick days.”
An unpredictable life
Few families expect to have a child with significant disabilities. Many are thrown into a world of juggling appointments, learning medical diagnoses and decoding doctors’ notes without preparation.
That was the case for Davis Smith, who was 31 when she had Claire. All of the standard tests during her pregnancy indicated her first baby was healthy.
But when she was born, doctors immediately knew Claire had medical issues.
“It was obvious, you know, almost from the moment she was born to the doctors that she would need some extra support,” Davis Smith said.
Claire spent the first few weeks of her life in the hospital.
“She’s needed intensive medical treatment, therapies ever since,” Davis Smith said.
It was a couple years before genetic testing was advanced enough for doctors to identify that Claire had a chromosome 2 duplication, which can cause developmental delays and a wide range of health problems.
For the Lathams, they noticed Calvin wasn’t reaching milestones when he was about a year old.
“He wasn’t sitting up by himself. He wasn’t crawling properly. He wasn’t walking. He kind of rolled everywhere, and he scooted,” Lindsay Latham said.
An MRI of his brain revealed polymicrogyria, or PMG, which means his brain developed an excessive number of small folds on the surface before he was born.
“So the entire front half of his brain is shaped differently,” she said.
The condition presents like cerebral palsy, causing issues with movement and coordination. Once a week, Calvin sees a physical therapist. He also has epilepsy, which causes seizures.
“So, we juggle a lot, and he takes a lot of medication to control that,” Latham said.
Inside the family’s colorful living room, portraits hang on the walls that show an exuberant family and in all of them, Calvin’s smile is arguably the widest.
Medicaid plays a large role in allowing Calvin to thrive, Latham said.
“He is one of the happiest kids that I know. And he has every right not to be. He’s got a hard life. But his joy radiates.”
The path to Medicaid
At first, Davis Smith didn’t know Medicaid was an option for Claire. She was forced to end her career as an attorney for the federal government to take care of her.
“I really enjoyed being in public service and liked my job, but it just wasn’t feasible with the level of care that Claire needed before she had Medicaid. It was, you know, essentially all up to me and it was … impossible to care for her full-time,” she said.
There’s no handbook for having a child with complex needs. It’s not uncommon for families to learn their children can qualify for Medicaid from a physical therapist, as was the Lathams’ case, or people they meet in the disabled community.
But obtaining Medicaid coverage — and keeping it — isn’t easy.
The Lathams were twice denied Medicaid for Calvin before getting approval.
“Because your instinct is to talk about your kid in the most glowing way because you love them, and that’s not how you can best provide them services,” Latham said, referring to the initial Medicaid screening interview in which parents have to answer questions about the child’s medical history and capabilities.
“So, every year I have to go through the renewal process. … and I have to do an interview about all the things that Calvin can’t do, which is completely against what we want to do as parents. But he needs those supports so that he can live in his community.”
Children like Calvin and Claire typically qualify for Medicaid through a state waiver.
In D.C., Claire is covered through the Katie Beckett waiver, which allows children with complex medical needs to get care at home. In Virginia, Calvin is on the Commonwealth Coordinated Care Plus waiver, known as CCC Plus.
“Once a month, someone comes to the house to make sure that he’s still disabled. So the fact that there are talking points about massive fraud within the system, especially for disabled people, it’s crazy to me,” Latham said.
On top of all of it, parents must navigate the health insurance system.
“[Medicaid] provides things like an adaptive car seat, which we had to fight for because our private insurance denied us twice, so that he can be safe in the car. And Medicaid picked up the remainder of that once it was actually finally approved. It took us almost a year to get that,” Latham said.
It’s still unclear how any federal cuts to Medicaid would impact services for children with disabilities. It could vary widely from state to state, because it’s the states — and D.C. — that administer the health program within broad federal rules. That means it will be up to the states to decide how they might try to make up for lost federal funds.
“So, no matter what the policy changes, if there are federal funding cuts to Medicaid, states are going to have to make tough decisions about coverage, about how much they pay providers and what benefits they provide, because it’s going to be challenging to offset the loss of those federal funds,” said Liz Williams, a senior policy manager at KFF, a nonpartisan health policy nonprofit.
An immense financial strain
Lindsay and Toby Latham both work full-time. But without Calvin’s Medicaid, “One of us would have to leave our job or find a new job that’s part-time and remote,” Lindsay Latham said.
Latham estimated Calvin’s caregiver alone costs at least $30,000 a year. After that, she said Medicaid helps cover about $1,000 in medications each month, any visits to the emergency room, and whatever isn’t covered for doctor’s appointments. Medicaid paid $442 for his last visit to the neurologist, for example.
They’ve been working on a long-term plan to do renovations to their home to make it more accessible for Calvin as he grows. That would have to be put on hold if he loses Medicaid.
Claire’s family would be in a similar predicament. Davis Smith estimated Medicaid has covered “well over a million dollars” since Claire got coverage.
“Our entire lives, I feel like, have really centered around making sure that Claire keeps access to Medicaid. That’s the most important thing for her and our family.”
“It’s important to think about the fact that Medicaid is there as a program of last resort. Generally speaking, people with Medicaid don’t have any savings,” Beadnell said.
Ripple effects of Medicaid cuts
Billions in Medicaid cuts would likely mean detrimental health outcomes for people with disabilities and could even cost lives, advocates say. It would also be devastating to caregivers who are paid through Medicaid.
“We’ve worked with thousands of families over the history of The Arc of Northern Virginia who use Medicaid for things like the caregiver who can literally lift someone out of bed in the morning. And if funds for that caregiver are cut, within days, we’re looking at that person possibly having bed sores and being hospitalized because no one can get them out,” Beadnell said.
The American Civil Liberties Union said there are approximately 5 million direct-care workers who take care of seniors and people with disabilities on Medicaid.
“These workers, predominantly low-wage women of color, help with all aspects of daily life, such as bathing, dressing, eating, managing medications, and attending appointments,” the ACLU said.
Safety net hospitals and clinics also rely on Medicaid funds to continue operating. Some examples of those hospitals and clinics in the D.C. area include MedStar Washington Hospital Center and Children’s National Hospital in D.C., University of Maryland Capital Region Medical Center in Largo, Maryland, and the Inova Juniper Springfield/Fairfax clinic in Fairfax, Virginia.
Ripple effects of taking away Medicaid from millions would be terrifying and costly, Beadnell said.
“Crisis response services, incarcerating people who no longer have access to mental health medications and are struggling, families losing homes in foreclosure because parents had to quit work to stay home to keep a child with a disability alive when they could no longer hire caregivers,” she said.
“We have to start speaking up and we have to start getting loud.”
-Lindsay Latham
Endlessly advocating
Having a child with severe disabilities can be like living in a particularly cruel game of whack-a-mole.
It’s the trips to the emergency room when your child has the common cold, the eight-month waitlist to get a diagnostic test for autism, days of back-and-forth messages to get a prescription ordered, a sudden phone call that a vital procedure has to be pushed back because the surgeon is no longer on the schedule that day. These are all real-life examples I’ve experienced as a disability parent.
From the doctor’s office to the classroom, these parents are used to relentlessly advocating for their children.
Now, they’re rallying together and speaking up in an effort to keep Medicaid.
“It’s not a choice at this point…. We have to start speaking up and we have to start getting loud,” Latham said.
“I think as Americans, we don’t want to sacrifice people with disabilities and our disabled children to give more tax cuts to the very wealthy. I think this is antithetical to who we are as a country and antithetical to American values,” Davis Smith said.
Disability advocates are encouraging people to call their local, state and federal lawmakers.
”Every single person who is concerned, if they use a fraction of that anxious energy to share with their congressperson a story about what Medicaid really means to them,” she said.
“We have a lot of hope that we’ll be able to ultimately protect Medicaid as more and more families rise up to reach out about this.”
