Colorado Medicaid officials are pausing a few proposed cuts that would have affected children and adults with severe disabilities who are cared for at home by family members after state lawmakers found the cuts too painful to support.
The proposals, which came as the state Medicaid program is trying to find tens of millions of dollars in cuts to help balance the budget, were to cap the number of hours family caregivers could bill for what is often round-the-clock medical care, and reduce their pay rate to match what is allowed for group homes.
After hours of tearful testimony, the legislature’s Joint Budget Committee refused to grant the requests, pushing them off until next year’s budget instead. The six-member bipartisan committee’s decision to deny and delay came after an 11-member citizen committee appointed by the governor, called the Colorado Medical Services Board, refused last month to even make a motion on a proposal for a rate cut for the state’s most vulnerable people.
“I understand we need to make cuts,” Elizabeth Moran, executive director of the Arc of Colorado and sister to a person with disabilities, told lawmakers last week. But cutting services for people who are living at home “is not saving money. It is just shifting costs over to more expensive systems. It pushes people into crisis. It will result in institutional care, institutions and beds that we don’t have, care staff that we don’t have. And in the process, cause real harm to Coloradans.”
The Colorado Department of Health Care Policy and Financing, which includes the Medicaid division, began notifying case managers across the state that the actions to trim costs were now on hold. The news came as a relief to family caregivers, who for months have shown up for various hearings, sometimes pushing loved ones in wheelchairs, pleading with policymakers not to make the cuts. The fight is hardly over, though.
The whole process of trying to trim the Medicaid budget has felt unbearable at times for those forced to make the decisions.
Medicaid officials argue that they must change policies and rates for the long haul, otherwise the services are not sustainable. Spending on the federal-state insurance program for people with low incomes and disabilities now consumes one-third of the state budget, leaving less for other state necessities, including education and transportation. 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.
Medicaid spending has grown about 9% during the past decade, and the long-term care portion of Medicaid jumped to $4.1 billion from $2.9 billion in just three years.
The state health care department, armed with an August executive order from Gov. Jared Polis directing budget cuts, had already begun training case manager agencies on the cuts, which Medicaid officials had planned to put in place April 1. Last week, the department told those agencies to hold off, acknowledging “the amount of change you’ve all been asked to navigate recently.”
In response to a question from The Sun, spokesperson Marc Williams said the health care department “will continue to work with the legislature to find a way to resolve the state’s structural budget shortfall.”
Two tough proposals
Two proposals affecting people with disabilities were the most unpalatable, so far.
One was a 56-hour weekly caregiver cap, which would have cut some parents’ hours by half. The other was a “rate alignment” that would have moved family caregivers into the same rate category as host homes that can care for up to three people at a time, about a 10% reduction in money.
Medicaid officials said their goal in implementing a 56-hour cap per caregiver was in part to make sure that people with disabilities have multiple caregivers, not one parent who is burned out. But parents say that’s not how it will work because there simply aren’t enough caregivers to hire.
The Colorado Springs parents of a 12-year-old girl with profound disabilities who needs 24/7 care were among those concerned about the proposed cap on caregiving hours. Ronnie Broyles, who received training from a hospital to care for his daughter, and his wife currently split the 168 hours per week that have been approved by Medicaid. The proposed cap would drop that number to 112 — 56 hours per caregiver per week.
In the past, when the family tried to hire outside caregivers, one registered nurse showed up drunk, Broyles said. Another stuck with them less than a year before getting a higher-paying job at a hospital. Five caregivers who came for an interview refused to take the job after realizing the high level of care his daughter required. One took the job initially but then “panicked” when it was time to change his daughter’s tracheostomy tube, Broyles said.
“If they cut her hours as much as they are wanting, it will be devastating to myself as her caregiver as well as to her,” he told The Sun. “I would be left with the choice of trying to find another job. If I am forced by the state to have to go back to work in a regular, outside job, my daughter would be required to go into a skilled pediatric nursing facility outside the state of Colorado at a much higher cost to the state of Colorado than what they are currently paying.”
It would take three registered nurses to care for Boyles’ daughter, which would cost $9,000 per week or $460,000 per year.
“I do these tasks for a fraction of that,” said Boyles, who is paid about $25 per hour. “This has nothing to do with burnout and more to do with a manufactured economic crisis in which the state of Colorado mismanaged Medicaid funding and now the people who need these services the most aren’t going to get them.”
Another parent, Tammi Moore, spoke of how she had to raise three boys on her own after her husband died. One son has Down syndrome and complex medical needs, so Moore became a certified nursing assistant and works as his caregiver. She also worked another job when her son, now 20, was still in school. “I was doing pretty much any extra work to fend for my kids,” she said.
“I’m one of those families. We’re doing the best we can and we are it. We’re keeping our kids out of the other facilities we would have to put them in.”
Decision merely postpones inevitable cuts, budget director says
Lawmakers on the Joint Budget Committee said they were slammed with calls and messages from people in similar situations.
“I do worry about a person that is having to do this full time without any help. It scares me,” said Rep. Rick Taggart, a Republican from Colorado Springs. “But if they don’t have an alternative and we just cut their hours in half or perhaps a little bit more. … Are we going to put that single parent into poverty?
“I don’t know what to say to somebody like that. I know I’m going to face this in rural Colorado as well.”
Medicaid officials said they had heard the personal stories, too, but that they have a responsibility to drive sustainable policy.
“We have some families where maybe both parents are getting paid to the tune of 112 hours a week to care for a single child to the tune of over $200,000 a year, plus,” said Bonnie Silva, director of the health care department’s Office of Community Living. “That’s not fiscally sustainable for our state and it’s not the right policy in terms of making sure we have a diversity of workforce in the long term.”
Silva also said single parents and others could apply for a “temporary exception” as the department phases in the caps.
Sen. Judy Amabile, a Boulder Democrat, was among the lawmakers who wanted to delay the cuts. “I am concerned for the family that goes from $120,000 to $60,000 overnight,” she said. She predicted that families won’t find outside help and will just have to make due without compensation, “because they are the parents.”
It’s unclear what state leaders will propose instead in order to trim Medicaid spending.
The governor’s budget director, Mark Ferrandino, supported the proposed cuts, telling lawmakers they would help stave off future decisions that will be even harder to make. Enrollment in programs for people with disabilities continues to grow, and the state needs to adopt the best long-term fiscal policy “in a way that is compassionate and understanding.”
“These aren’t easy stories,” he said, “and they are hard to deal with.”