Susan Root often works 16-hour days as she makes sure the machines that feed her daughter and pump oxygen into her lungs are working. She also manages her daughter’s seizures and handles all the necessities that Amy can’t do for herself, such as bathing.
She’d prefer to have help, but no one is lining up to care for a medically complex 24-year-old at the rates Medicaid pays. So Root has made it work.
But making it work by stepping in personally may not be a viable option anymore if the state goes through with a policy change that would pay caregivers for only 56 hours of care per patient in a week — or about half of what she often puts in now.
“I do it full time, whether I get paid or I don’t get paid,” Root said, “because (Amy) has to have the care.”
The change to a 56-hour limit was in Gov. Jared Polis’ October executive order manding cuts and sweeps of unused funds from state agencies. The Colorado Department of Health Care Policy and Financing, which administers Medicaid in the state, estimated it would save about $168,000 in the current fiscal year and $1.1 million in the next one that starts in July.
All told, Polis’ October order cut about $41.7 million from the health care policy department, including about $13.5 million that would have come from the state’s general fund. A previous executive order, in August, also cut deep, with about $79.2 million in reductions.
Limiting caregivers’ hours may not be one of the largest cuts, in raw dollars, but families of people with severe disabilities said it would create a problem they couldn’t easily solve. Working outside the home isn’t an option without a reliable workforce of caregivers to meet their loved ones’ needs, so they’ve built their budgets around getting paid by Medicaid for the hours they spend providing routine medical and personal care. If they aren’t paid for those hours and can’t find someone else to act as a caregiver, they’ll have to do the same work with less income.
Colorado’s Medicaid program now reimburses caregivers for up to 16 hours per day of nursing and other home health services to people on its disability waiver programs. The waivers apply to people whose needs are severe enough to qualify for nursing home or institutional care, but who prefer to live with their families or in a less-restrictive setting, such as a group home.
Normally, the state doesn’t make such midyear cuts, but federal tax changes threw off its budget this year. Colorado ties its tax laws to federal ones, so cuts enacted in H.R. 1, the tax bill passed by Congress and signed by President Donald Trump last summer — and colloquially known as the “One Big Beautiful Bill Act” — mean the state will collect less than expected this year.
Lawmakers closed a portion of the resulting $783 million hole during a special session in August but left it to the governor to make the budget balance.
The cuts may not produce the expected savings, said Bethany Pray, the chief legal and policy officer at the Colorado Center on Law and Policy. Multiple changes, including the cap on caregiver hours, require approval from the federal Centers for Medicare and Medicaid Services.
If the agency refuses, or even takes longer than expected to decide, the state won’t reap those savings, she said.
‘Families are already struggling’
Root is still figuring out what she’ll do if the caregiver cuts take effect. She’s a single mother, and the rate Medicaid pays to care for Amy is her primary source of income.
Getting another job isn’t an option without someone else at home to manage her daughter’s health, and cutting her current income roughly in half isn’t going to work with the cost of living in Colorado Springs, she said. When Amy was 8, she survived a severe brain injury, which paralyzed her limbs and forced her to rely on a ventilator and feeding tube.
If Colorado cuts the pay-eligible hours, Root said, she may have to relocate the family to a state with more supportive policies. She moved from Florida in 2015 because Colorado was one of a handful of states that reimbursed parents for care to their underage children with severe disabilities. States tend to be more permissive in paying for care to adults.
“I was looking for Colorado to be my forever home,” she said.
A caregiver could exceed the 56-hour maximum if they serve more than one recipient, said Bonnie Silva, director of the department’s Office of Community Living, which handles the waiver programs. Expecting family to meet most or all of a recipient’s needs is easy for the agencies that coordinate care and payments, she said, but isn’t sustainable for the parent doing all the work.
“What we have seen is the overreliance on one caregiver,” she said. “There has to be a mix of cultivating this workforce outside of family caregivers, and leveraging family caregivers.”
Vacancies in direct-care positions for home health are down 17% and agencies reported turning away 10% fewer referrals in the most recent year than in 2022, according to the department. Agencies need to focus on hiring more direct-care staff so that recipients’ families don’t have to provide all the care themselves, Silva said.
Root said the idea that agencies can just hire more caregivers is divorced from the reality on the ground. Nurses have plenty of easier, more lucrative options for work than providing home care, and she hasn’t been able to hire enough staff at any point in the last 15 years, she said.
“Families are already struggling with the caregiver situation,” she said.
The department said it would grant exemptions to the 56-hour limit only in “extraordinary and short-term” circumstances. Assuming the Centers for Medicare and Medicaid Services approve the change in the next few months, the department plans to implement it in the spring.
More cuts are almost certainly coming. Lawmakers face a $1 billion budget gap in the 2026-27 fiscal year, and much of the cutting Polis included in his proposed budget came from Medicaid, which accounts for about one-third of the state’s budget.
The program has grown at an average rate of about 8.8% per year, or double the rate at which general state revenue can grow under the Taxpayer’s Bill of Rights, which limits how much revenue state and local governments can keep.
Silva said the department is trying to avoid across-the-board rate cuts by finding the outliers driving significant spending. At the same time that overall Medicaid spending grew about 9%, spending on long-term supports and services rose 44%, she said.
One of the reasons that subset of Medicaid spending took off in recent years is that the department allowed parents to provide more services during the pandemic, with a goal of minimizing the number of outsiders visiting the program’s sometimes-medically fragile recipients, Silva said.
The department doesn’t believe parents are abusing the system, but some agencies may be pushing to bill as many services as possible while minimizing their costs by hiring parents to provide those services, she said.
“We have to make sure we have a strong program not just now, but five years from now,” she said.
Budget pressures force decisions
No one is particularly happy with the proposed cuts, but not making them now would mean that the imbalance between Medicaid’s trajectory and what the budget can bear will keep growing, said Julie Reiskin, a co-executive director of the Colorado Cross-Disability Coalition.
Not all states compensate family caregivers, and if Colorado can’t balance the budget, lawmakers might have to make a cut that drastic, she said.
“There will be people that will have less than they’ve had before. That’s going to happen and that’s going to be hard,” she said. “I don’t see a way out of this fiasco we’re in that’s not going to hurt anyone.”
Before making cuts to disability services, however, the state needs to consider how much it pays for contracts that don’t directly benefit recipients, such as contracting with credit-reporting agencies for income verification, Pray said. If the state’s voters were to remove the revenue growth cap under TABOR, the state would no longer need to make cuts to bring down the rate of spending growth on long-term supports and services, she said.
Families of kids with severe needs have built their financial lives around getting paid to care for them for up to 16 hours a day, either because they feel the arrangement benefits their children or because they can’t hire anyone else to help, said Megan Bowser, the executive director of Family Voices Colorado and a caregiver for her son.
The point that most families would do better with more than one caregiver is valid, Bowser said, but the state can’t just conjure up a sufficient home care workforce.
“Because the reimbursement rates are really low on most services, it’s really hard or impossible to find someone,” she said.
Family advocates are urging the state to extend the timeline for implementing any rule changes, so that people relying on the current setup have more time to plan, Bowser said. They’re also closely watching for information about the exemption process, she said.
Victoria Moul, a Johnstown resident who has three children with complications from premature birth, said she doesn’t see how a change could work for her family.
Her son Exavier, 14, has a rare seizure disorder and severe breathing problems, and her 13-year-old twins both need extensive supervision because of Hyden’s behavioral challenges and Jasmine’s frequent choking. She tried to keep working while caring for all three after her divorce. But employers inevitably lost patience with her need to leave work to pick up Hyden or stay with Exavier during sometimes-lengthy hospitalizations.
In 2017, she became a certified nurse assistant and full-time caregiver. Being on duty at all times is challenging, Moul said, but it has allowed her to teach the children at home, where Exavier isn’t catching viruses that land him in the hospital on a regular basis.
“Now, my kids are stable and doing so much better,” she said.
The department hasn’t clarified if it will allow caregivers with more than one special-needs family member to continue working 16-hour days. If they don’t have that option, Moul said she’ll have to go back into the workforce — a situation she doesn’t expect to go much better than it did 10 years ago, when she lost jobs because of her children’s needs.
More concerningly, Exavier will probably spend more time in the hospital, and schools will be more likely to call police as Hyden gets bigger and his aggressive behaviors continue, she said.
“How is that going to help us?” she said.
Other cuts to Medicaid, HCPF
Here are other cuts to the state’s Medicaid program and to its Department of Health Care Policy and Financing, as outlined in Gov. Jared Polis’ executive order, with savings cited for the fiscal year ending in June:
- Reduce rates for some services to 85% of what Medicare pays, saving $3.5 million.
- Only pay for “community connector” services for children between ages 6 and 17, while reducing the maximum number of hours and lowering the rate, saving $2.7 million. A community connector teaches children how to participate in activities.
- Delay covering services by community health workers, saving $1.4 million.
- Place “soft caps” of 13 hours per day for home health care, 6.8 hours per day for personal care (such as assistance with bathing and eating), and three hours per day for homemaking services, saving $1.2 million.
- Require Medicaid recipients to try biosimilar drugs before covering the brand-name version, saving $982,000.
- Delay “presumptive eligibility,” which allows people to receive disability services while their applications are pending, saving $690,000.
- Reduce grants for dental care to older people without coverage, saving $500,000.
- Cap adults’ dental services at $3,000 per year, saving $250,000.
- Lower payments to pharmacies, saving $85,000.
- Reduce rates for movement therapy, which involves music and dance, saving $60,000.
- Limit paid homemaking hours to five per week for parents, spouses and legal guardians, saving $37,000.
- Reduce how much hospitals get paid to administer specialty drugs to outpatients, saving $32,000.
–Meg Wingerter
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