Laura Halvorson relies on two 24-hour breathing machines to keep her alive. The machines cost $2,000 per month.
They’re paid for through her insurance from the Affordable Care Act. Halvorson, who is 36 and lives in San Antonio, has muscular dystrophy, a disease that causes progressive loss of muscle mass.
For years, Halvorson was a teacher in North Texas and received health insurance through her employer. But eventually her disability progressed to the point that she could no longer work.
Now she’s worried that the U.S. Supreme Court will strike down the health care law that has helped her live independently. Without it, Halvorson fears she’ll end up in the state’s care at a nursing home.
Texas is leading a group of conservative states, with the backing of outgoing President Donald Trump, in a legal battle to have the sprawling health care law struck down. Texas argued last month before the U.S. Supreme Court that when Congress in 2017 eliminated the individual mandate, a tax for people who do not obtain health insurance, the rest of the law became unconstitutional.
A ruling is expected to come next year, and for Halvorson and 3 million other disabled Texans, the stakes feel impossibly high.
Without the Affordable Care Act, disabled Texans stand to lose programs that have allowed more people to stay in their homes, rather than state-run institutions. And like many Americans, they fear they could again face insurance companies that would deny them coverage because they have preexisting conditions.
“The ACA was a huge deal in terms of fairness for insurance for all Americans, but certainly for people with disabilities,” said Brian Shannon, a law professor at Texas Tech University who has served on the Governor’s Committee on People with Disabilities.
Living at home
Texas is one of eight states that opted into the Community First Choice Option program, made possible by the ACA. The Medicaid program gives states funding to help keep disabled people in their homes who might otherwise end up in nursing facilities or other institutionalized care.
“It can provide personal assistance services to [have] someone in your home to help you with cooking and cleaning, to help you with personal tasks like toileting or grooming,” said Silvia Yee, senior attorney at Disability Rights Education. “It can help with support systems that a person with a disability might need to stay in the community.”
Sheena Walter, 35, lives in Austin and has used the Community First Choice program for four years. Walter is autistic and needs personal care attendants that help with tasks like cooking and laundry five days a week.
For years, she’s had personal care attendants paid for by Medicaid, but they didn’t always show up. Sometimes, Walter waited over a week for someone to arrive and sustained herself on cold sandwiches.
“It would be continual frustration, pretty much, because you would call the agency and they would say there’s no one to send,” Walter said.
Now her CFC service coordinator helps her advocate for the care she needs and acts as a mediator when attendants aren’t doing their jobs.
“What I found is sometimes agencies don’t listen directly to a disabled individual,” Walter said. “That’s been my experience. But the service coordinator, they would most of the time listen to them. So it does help to have an extra person to be an advocate, especially if it’s a stressful situation.”
Through CFC, Walter also has access to more services than she got before, like habilitation services that help her learn new skills.
Before CFC, the state primarily relied on home- and community-based services, a Medicaid waiver, to provide at-home care for people with disabilities.
But there are more than 100,000 Texans on a waiting list to receive those services, and some people will wait more than 15 years before their number is called.
Walter has been on the waiting list for home- and community-based services for eight years. She’s still hopeful she’ll eventually be approved because she’d have access to even more home assistance than she currently receives, like speech and cognitive therapy.
Meanwhile, CFC is an entitlement program, so the state can’t put people on a waiting list for services. It has to offer services to all who are eligible — which includes people who are eligible for Medicaid who require an “institutional level of care” and need assistance with daily activities like eating and getting dressed.
Walter’s been told she may have to wait up to 10 more years for home- and community-based services.
Advocates stress that CFC is a vital service, but it does not replace the state’s home- and community-based services, which provide more specialized care and therapy.
Around 25,000 Texans were using the CFC program in 2019, according to Texas Health and Human Services. But Walter and disability advocacy groups are worried the program may disappear.
Sean Jackson, a Disability Rights Texas attorney, said if the court rules to eliminate the ACA, the program would likely be cut whenever federal funding ran out.
A spokesperson for Texas Health and Human Services said the agency wouldn’t be able to speculate on the continuation of the program.
What comes next?
Before the ACA, people with preexisting conditions weren’t guaranteed insurance policies. Companies could simply turn them away or give them a policy that didn’t cover preexisting conditions while charging them higher rates, Shannon said.
Now companies are required to offer a plan to anyone who applies, regardless of their health status, and they have to charge people in the same age group similar rates.
If the ACA were to go away, insurance companies likely wouldn’t renew contracts with people with preexisting conditions because on paper, they cost more to insure, Jackson said.
The act also eliminated lifetime and annual caps, which put a limit on how much money a company would spend on a person’s benefits before they would be required to pay it themselves, and allowed children to stay on their parents’ insurance until they were 26 instead of 19.
“Young adults with disabilities are more likely to have lower rates of coverage, to lack regular health care providers, to have more unmet health needs and to receive fewer routine checkups, and young adults with disabilities are more likely to have decreased access to health care than adults,” said Scott Daigle, public policy director for the Texas Council for Developmental Disabilities.
Alejandrina Guzman, a 25-year-old disabled Texan who is on Medicaid, said to be disabled in Texas is to constantly be fighting for your rights.
“Knowing that I’m disabled, [I have to] fight for my right to not only have Medicaid or have coverage or the fight for the ACA,” Guzman said. “It’s also this fight to say that I’m disabled, not disposable.”
Halvorson said she spoke with both Republicans and Democrats when Congress sought to repeal the act in 2017. Although they promised a plan to replace the ACA, no plan has materialized at the state or federal level.
Now, Halvorson is hopeful that the Biden administration will protect those with preexisting conditions even if the ACA is overturned.
But experts say it’s incalculable what will be lost if the act is repealed.
“For the average person on the street, for the person with disabilities, there’s a huge, gaping hole of knowledge and a huge, gaping hole about something that people with disabilities can’t afford to not know about,” Yee said. “Can they go to the doctor, can they get the pills they need, can they get their wheelchair fixed?”
Shannon said if the law is repealed in its entirety, the state legislature could pass laws to fill the gaps, but nothing they do would be as comprehensive as the ACA. It’s also unlikely the Republican-dominated Legislature would have an appetite to replace or protect the law.
“Largely, it would fall back on Congress to step up to pass something that would take its place in terms of assuring these kinds of coverage,” Shannon said. “That’s a great of great concern and great fear to the community of persons and families of persons with disabilities, because there would be this very concerning backwards step in terms of the kinds of protections that ACA now provides.”