When it came time for any of the Colorado Medical Services Board members to make a motion, there was only dead silence.
For two hours, the 11-member board that governs the state Medicaid program heard pleas from parents who provide round-the-clock care of their adult children with severe disabilities. And when the testimony was over, no one on the board would make a motion that would result in cuts to the parents’ monthly pay.
The request from Medicaid officials for an emergency rule change that means a 10% pay cut for families of Colorado’s most vulnerable people with disabilities effectively died when the board refused to bring it to a vote.
But about a week later, Medicaid officials posted a memo directing case managers to move ahead with the rule change anyway.
The at-odds actions have left families confused — first thrilled when the board seemed to take their side, then devastated and angry when the Colorado Department of Health Care Policy and Financing, which includes Medicaid, signaled it was moving forward with the rate change.
It’s the latest wound in a painful year for the state Medicaid program, which faces wide-ranging cuts in services that will affect thousands of Coloradans with disabilities. Medicaid spending is eating up money for education, transportation and the rest of the services the government provides, with spending on the insurance program for people with low incomes and disabilities making up one-third of the entire state budget. It would take $631 million to keep offering the same Medicaid programs next year, but the proposed budget includes less than half of that, or about $300 million.
Among the cuts resulting in the loudest protest is the rule change Medicaid officials brought to the Medical Services Board this month, which would move family caregivers into the same rate category as host homes that can care for up to three people at a time.
While Medicaid officials didn’t get the backing of the Medical Services Board, they have an August executive order from Gov. Jared Polis that ordered the suspension of several state programs due to “insufficient revenues” because of federal budget cuts. Among the $252 million in cuts listed by the governor was $1.45 million for adults with severe mental and physical disabilities living in their own homes and cared for by their parents.
The board’s rules do not override an executive order from the governor, according to the board’s coordinator. Yet Medicaid officials, in asking for the rule change, told board members they needed the emergency rule approved in order to move forward.
“The consequence would be case managers cannot begin implementing the change and have them effective April 1,” said Cassandra Keller, with the health care department’s Office of Community Living. “We are counting on those savings. It’s a huge fiscal concern.”
In the department’s memo, emailed and posted online the week after the board declined to pass the emergency rule change, Medicaid officials said case managers should attend training this month to learn how to reclassify family caregivers and that the new rates would begin April 1.
Family caregivers have accused Medicaid officials, who call the change an “alignment” instead of a rate cut, of circumventing the public comment and approval process normally followed for rate changes. Now, they say, they are ignoring the wishes of the Medical Services Board.
Keller told the board there had been “historic confusion” about where family caregivers fit within the rate categories, a comment that drew heated reaction from parents who said it has always been clear.
One mother, Nicole Villas, accused Medicaid officials of creating a “fictional emergency.”
“It’s not an alignment. It is a cut,” she said. “It has not been confusing. Family caregivers are not host homes.”
The families, who receive “long-term services and supports” from the Medicaid program, have given up working outside the home to instead provide 24/7 care for adults who in many cases need feeding tubes and tracheotomies, have multiple seizures each day and whose intellectual abilities are similar to those of toddlers. Depending on the severity of needs, they are paid from $30,000 to $100,000 per year to provide round-the-clock care for their adult children through the state-federal program. Otherwise, their adult children would live in institutions, which cost up to $400,000 per year.
About 8,600 people with developmental disabilities in Colorado are receiving Medicaid funds to support residential care in the community, including in host homes or individual homes with caregivers. It costs the federal-state Medicaid program $460 million annually, with a median per-person cost of $76,000 per member.
Costs have increased significantly — participation has gone up 59% and expenses have increased 134% since 2019, Keller said. But it isn’t the only Medicaid program for people with disabilities that is facing cuts.
“No one is going unscathed is what it feels like unfortunately,” Keller told the medical board. “I don’t know that that’s necessarily reassuring or just really sad news to hear.”
Another mother, Traci Anderson, said she became a licensed practical nurse to become the caregiver for her 23-year-old son, who has needed 24/7 care since he was born. He does not speak, uses a tube to breathe and another tube to eat. With the rate change, his daily benefit will drop to $307 from $334, or by $9,625 per year, Anderson said. The daily rate is not enough to pay a nurse to visit the home, which would cost at least $40 per hour, or $320 for an eight-hour work day.
Anderson’s son will require round-the-clock care “until the day he dies,” she said.
Medicaid officials told The Sun on Friday that the department is operating under the authority of the governor’s executive order as the state deals with a funding deficit of more than $800 million. They also said they will bring a revised version of the rule change back to the Medical Services Board in February, and that the revised version will not apply to every family caregiver but will depend on the classification of the setting where the person lives.
The changes are about “good stewardship and fairness” and will help “preserve funding for the long run and prevent across-the-board reductions that would impact everyone,” department spokesman Marc Williams said via email.
“The department plans to continue to work with the (board) between now and the effective date to ensure regulations are in place for this change.”