Kristyn Herbert has a knack for coming up with delicious recipes in her head. But a seizure when she was a 2-day-old infant that left her not breathing for 10 minutes means that she needs someone else to prepare the food in her Meridian apartment.
Herbert pays for her 24/7 care through Medicaid, but this type of long-term care in her home is considered an optional benefit that states may offer under federal regulations. Herbert has been living under looming uncertainty about whether the service will be taken away after Congress this month passed a federal budget reconciliation bill that is expected to cut Medicaid spending by around $1 trillion over the next decade.
“If they cut my Medicaid, I don’t know what to do, because I won’t move into a nursing home,” she said. “I can’t have my baby (Herbert’s cat Destiny is her “baby”) and people go to nursing homes to die.”
The sweeping tax-and-spend bill passed by Congress July 1 makes a number of changes to Medicaid, and supporters and critics argue about how those will impact those who rely on the program for health care coverage.
Many of the bill’s supporters, including Idaho’s Republican U.S. Sen. Mike Crapo, have said the bill’s reductions will protect the program for those who it was originally intended for, including children, pregnant women, and those with disabilities.
Crapo serves as chairman of the Senate Finance Committee and played a key role in the passage of the budget bill.
Crapo said in an interview with the Idaho Capital Sun that he considers the fear that many have expressed of people losing their Medicaid coverage is “inaccurate.”
“The only way to prove this is to wait and see what actually happens,” he said. “But the bottom line is this, no one’s benefits were cut in this legislation, unless you are a person who is not an American citizen and not legally present in America.”
He also noted that others will lose benefits if they don’t comply with new work requirements or if they were registered to receive payments from multiple states.
How the reconciliation bill will affect provider taxes, hospitals and health care providers
However, the bill’s limits on what are known as provider taxes — which allow states to tax hospitals to increase the amount of money in the program and therefore increase the amount the federal government matches — have left many wondering whether, with less money in the system, states will have to reduce or cut optional Medicaid benefits to balance their budgets.
“It gives you a bigger pot of money to draw down more, and when you reduce it, well, you’re not going to be able to draw down as much money,” said Mel Leviton, executive director of the Idaho State Independent Living Council. “I don’t see how that could not lead to cuts.”
Idaho assesses hospitals, nursing facilities and intermediate care facilities and the amount assessed makes up the state share to draw down on federal Medicaid funding as a supplemental payment to those providers. The payment is the difference between what Medicare would have paid and what Medicaid did pay.
In 2022, the Legislature approved a law that allowed the state to assess an additional amount from hospitals to pay for increased rates for home and community based services.
The Idaho Department of Health and Welfare is “reviewing the bill to evaluate its impacts on Idaho,” agency spokesperson AJ McWhorter told the Idaho Capital Sun in an email.
It’s unclear what health programs could be reduced, but some Idahoans fear the uncertainty
Home and community based services — which allow health care workers to go into people’s homes rather than go to a residential care facility — are one of the optional services under Medicaid provided in Idaho, among many others. More than 20,000 Idahoans, including Herbert, receive some type of home and community based services, Leviton said.
Other optional services include coverage of dental and vision care, prescription drugs, prosthetics, physical therapy, occupational therapy, respiratory care for those who rely on a ventilator, and case management.
“It’s funny that they’re called optional benefits, because they’re not actually optional,” said Twin Falls resident Tara Rowe.
Rowe is enrolled in Medicaid and Medicare, but Medicaid covers her physical therapy visits that go beyond what Medicare will pay for.
“It’s pretty much essential so I can function as a human,” Rowe said. “… it means me being mobile. It means me managing chronic pain, it’s just part of how I continue to deal with chronic illness and disability.”
She knows first-hand what her life would look like without those services, because she has already lived through it.
Rowe experienced her disabling event in 2008, when she was a 23-year-old graduate student. She didn’t successfully gain access to Medicaid and Medicare services until 2012. In that interim, she paid out-of-pocket for most of her services or went without.
“I was not particularly mobile, I was not very independent,” Rowe said. “I had to rely on everyone in my life for something. I didn’t have the tools to manage pain. I didn’t have the tools to be sure that I didn’t cause more damage to my body. So I know the difference between trying to live with this and without that care, and what it is like now in the last 13 years of having care, it’s night and day.”
In that time, she missed both her grandparents’ funerals because she wasn’t mobile enough to be able to go.
With the services she receives now, she can live on her own without a care worker coming into her home.
“I personally would rather feel good enough on any given day to do my own dishes rather than have someone else come and do it for me,” Rowe said.
Moscow resident Larkin Seiler moved onto another optional Medicaid program, the self directed care service through the state’s developmental disabilities Medicaid system, when he wanted to move out of a certified family home and in with his then-girlfriend, now wife Jen Magelky-Seiler.
Under the program, Seiler receives a budget from Medicaid to hire his own staff that come to his home and help him with the basics of living, such as hygiene, meal preparation, and transportation. The Medicaid money goes through a financial intermediary, and allows him to pay for a worker for 10 hours a day.
Seiler said the service allows him to keep his job at Alta Science & Engineering, Inc., where he has worked doing data entry for 26 years. It also keeps him and his wife together in their home, where they’ve lived 10 years.
There are no agencies in Moscow offering the kind of in-home care that Seiler requires, he said. If he no longer had access to the program, he likely would have to go into a nursing home.
Magelky-Seiler also has disabilities, but she said she doesn’t think she would qualify for that level of residential care under Medicaid.
“It’s one of the things I worry most about cuts,” she said, “is losing our family, our home together.”
Medicaid recipients already face barriers to care in Idaho
Idaho is facing a significant shortage of direct care workers, the type of health care providers who go into the homes of people such as Herbert and Seiler.
Herbert previously had a need when her in-home care provider at the time went on vacation and her friend Mary Arndt stepped in to fill the position.
“And I’ve never left, they never came back,” Arndt said. “I’ve been with Kristyn almost 20 years.”
Arndt is 73-years-old, and said there are limitations on what she can do and how often she can come. Herbert was able to hire a couple more staff recently, but it had been a long time since anyone has applied, she said. Through Medicaid, she can pay her staff $20 an hour, which is set based on her level of care.
Thousands of Idahoans could lose health care coverage under federal spending bill
Some of the people she has hired she later fired because they did things like stole food or otherwise tried to take advantage of Herbert.
“She’s in a wheelchair. She’s disabled, but she’s not stupid,” Ardnt said, noting that Herbert often notices the un-professional behavior and quickly notifies her friend.
Seiler is able to pay $17 an hour, which often doesn’t compete well with other jobs such as at McDonald’s, he and Magelky-Seiler said.
Because there aren’t any Moscow agencies that provide care in the home, Seiler will post ads on Craigslist, put up flyers around town, and ask around through word of mouth to find staff.
“Unfortunately, we get a lot of people who wouldn’t pass a background check,” Magelky-Seiler said. “It takes a lot of work to filter through people and make sure that they’re quality individuals that should be in our home and providing safe care.”
Rowe said in the Twin Falls area she has a harder time finding some services that she could more easily access when she lived in Nampa. For instance, she used to be able to receive her needed steroid injections at one appointment at the Spine Institute of Idaho. At her clinic in Twin Falls, she has to schedule three separate appointments.
She said the community only recently had counselors get certified to do eye movement desensitization and reprocessing, or EMDR, therapy, which was a treatment she received 10 years ago in the Treasure Valley.
Idaho Medicaid patients are unsure of the future of their benefits, or what to do if they get cut
Each of the three Idahoans interviewed responded “I don’t know” when asked what they will do if their services get scaled back or cut entirely, but they all said they are worried.
“This is something I’ve been thinking and dealing with a lot recently,” Rowe said.
She said she knows her PT would get cut in about half and she could absorb smaller costs, such as her glasses, but things like pharmaceuticals may be too much.
Seiler said “I don’t really know what would happen” and his wife responded, “It would be really hard to live your life. You’re already living with the bare minimum.”
If the people utilizing home and community based services had to go into nursing homes, there wouldn’t be enough beds, said Leviton of the Independent Living Council. The nursing facility coverage is a mandatory benefit under Medicaid, but there are only about 6,000 beds statewide.
“Where are you going to put these 20,000 people?” Leviton asked.
Herbert said she would refuse to go to a nursing home, where she couldn’t take her beloved emotional support cat, whose full name is Destiny Angelle Herbert, and where she believes she wouldn’t receive as much care.
She said she tried to meet with Idaho’s congressional delegation to urge them to oppose the cuts, but had little luck reaching them.
“I wish they could be in my shoes,” she said of the congressmen.
She said of President Donald Trump, whose major policy agenda was largely fulfilled in the legislation, “Maybe I should ask him if I can move in.”
Idaho Capital Sun is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Idaho Capital Sun maintains editorial independence. Contact Editor Christina Lords for questions: info@idahocapitalsun.com.