Colorado families caring for disabled adults to see cut in Medicaid pay

DENVER — Colorado families paid by Medicaid to provide around-the-clock care for adults with disabilities will do so with about 8% less funding starting next year under one of the cuts meant to close the state’s budget hole

For years, family caregivers in Colorado received a higher reimbursement from Medicaid than “host homes,” where a handful of people with disabilities live with one or more people in charge of their care, said Deana Cairo, a Boulder resident who has two adult children with developmental disabilities.

That higher rate recognized that host homes typically accept people who don’t need as much support, while those who need constant one-to-one supervision typically get care from their parents or relatives, she said. But the state now will fund family caregivers at the same rate as host homes.

Cairo’s husband stays home with their 24-year-old son Ryan and 20-year-old daughter Allison, but also has to hire help with the money Medicaid pays because one person can’t supervise both young people at all times.

While most families will find a way to absorb the loss, some may have to place their loved ones in institutions, which are twice as costly for the state, she said.

“If (the state) precipitate(s) enough of a crisis, we’re going to have to leave people in emergency rooms,” she said of the funding cuts.

Bonnie Silva, director of the Office of Community Living under the Colorado Department of Health Care Policy and Financing, said the state isn’t cutting rates for family caregivers, but ensuring everyone gets paid equitably. The rate change would start after the department updates its payment rules, which could take until March.

“The state is aligning eligibility to make rates fairer and more consistent, ensuring higher rates go only to settings with higher costs, and helps keep waiver services sustainable for the future. Individuals with significant disabilities are served across all service options and the department is committed to ensuring that access continues,” she said in a statement.

Colorado faced a $783 million budget gap this year because of federal tax changes in H.R. 1, known as the “Big Beautiful Bill.” The legislature partially closed the gap, then gave Gov. Jared Polis authority to come up with $249 million in cuts and sweeps from other funds into the state’s general piggy bank. About $79.2 million came from the Department of Health Care Policy and Financing, which administers Medicaid in the state.

Caregivers expected to receive the 1.6% rate increase the state gave most providers this year, but the governor also cut most of that, giving providers a net increase of about 0.4%, according to the department. Family caregivers who spoke to The Denver Post said they can accept losing the 1.6% increase, but not an 8% cut on top of it.

“No one wanted to be in the situation H.R.1 forced Colorado into after Trump and congressional Republicans created a billion-dollar budget hole in our current year,” Polis said in a statement. “We knew hard decisions would need to be made to balance our budget, but I am proud of the work we did to protect our state’s fiscal stability while creating as little impact on services Coloradans rely on as possible.”

Paying family caregivers the same rate as host homes accounts for a relatively small segment of the savings, at about $1.5 million in the current budget year. But parents of adult children with severe disabilities said the cut will make already difficult situations harder.

Nicole Villas said the rate Medicaid pays to care for her 19-year-old son Aiden already works out to less than minimum wage, since he needs someone to monitor him 24 hours a day. Aiden has Dravet syndrome, which causes hundreds of small seizures daily and a major seizure every one to two days. During the worst seizures, she has to make sure his oxygen level doesn’t drop dangerously low.

Aiden attends a transition program for people with disabilities aging out of school-based supports for four days a week in Arvada, requiring an hour-long round trip each way from their home in Gilpin County, Villas said. She was considering hiring someone to take him in the morning, so she’d have time for other daily necessities, but the math won’t make sense with the rate cut, she said.

“I don’t know that’s going to be possible,” she said. “There’s no one who’s going to do this for less than I make.”

In theory, an adult with a developmental disability that prevents independent living has three options: a staffed group home, a host home where at least one caregiver lives with unrelated clients, or their family home, said Julie Reiskin, co-executive director of the Colorado Cross-Disability Coalition.

In the most severe cases, the state pays up to $86,000 annually for a person’s home care, Reiskin said. The person responsible — typically a parent — then uses that money to hire any professional help they need, and to pay for household necessities if they can’t hold a job while caregiving.

“You have to meet all the needs out of that,” she said. “It’s a small population and it’s an expensive population, but it’s appropriate that it’s an expensive population.”

In some cases, the Medicaid rate is a family’s main source of income, particularly for older parents who are retired and caring for their adult children full-time, said Alicia Burdick, CEO of Community Roots, a company that oversees family caregivers paid by Medicaid.

“This is money that they use for housing, for food, for medications,” she said.

Community Roots is trying to absorb the cut by reducing the amount it takes for its administrative work, but most of the oversight organizations will probably pass on the 8% to their clients, she said. The company also started a fundraising arm to give families another source of income, she said.

Fritz Peterson, of Thornton, said working for pay isn’t feasible while caring for her 27-year-old son Noah, who also has Dravet syndrome, as well as behavioral challenges related to autism, including a lack of awareness of his physical limitations.

Even finding a moment to use the bathroom is challenging if the staff member who assists him calls in sick, she said.

“Any reduction in pay is going to affect how we live,” she said. “To me, it’s so unfair that the most vulnerable people are the ones they’re choosing to cut.”

Villas said her family is fortunate enough that a cut in their compensation for Aiden’s care won’t break them, but other parents are already “underwater” trying to keep their children safe.

“The state went after this life-saving piece,” she said. “These are the exact populations that were not supposed to be affected” by cuts in H.R. 1.