Casey Barrett’s tidy, two-story home on a Westminster cul-de-sac hums with the constant drone of an oxygen pump.
“Most of the equipment I have is all stuff the hospital has,” Barrett said. “I feel very fortunate in having that equipment.”
Barrett’s 15-year-old daughter, Olivia, has an extremely rare genetic disorder. The oxygen pump is one of several medical devices in her bedroom – next to stuffed animals and a poster for “Rogue One: A Star Wars Story.”
Olivia’s mobility is limited and she is in a wheelchair. She’s nonverbal, needs supplemental oxygen to breathe, and uses a feeding tube to eat. There’s also her bathing, dressing, oral care, physical therapy, speech therapy, and many doctors’ appointments.
Barrett, who is a certified nursing assistant, cares for her around the clock with the help of his 20-year-old son, Jordan.
“It's constant,” Barrett said. “There's always things that either need to be done or need to be prepared for from the get-go, well, from whenever she wakes up.”
Barrett and his son are able to provide the level of care Olivia requires because the state reimburses him for it. But he is worried he won’t be able to keep it up because Colorado lawmakers are considering major cuts to the programs he relies on.
The changes are part of wide-reaching cuts lawmakers are considering as they try to balance a budget shortfall of around a billion dollars, largely driven by rising costs of health care. The cost of continuing current government services and programs is about $1 billion more than the state has to spend, and Colorado’s constitution requires that lawmakers balance the state budget every year.
So, they are trying to rein in Medicaid spending anywhere they can.
Colorado’s Department of Healthcare Policy and Financing, or HCPF, which administers the state’s Medicaid program, pays family caregivers like Barrett and his son about $20 per hour. But the state is proposing cutting those hours from more than a hundred a week down to 56. The reduction would be implemented gradually over the course of several months later this year and include some exceptions for people who need more hours.
But Barrett said the reduced hours mean he would lose more than half his income.
“The finances that we would need to just maintain would be gone,” Barrett said.
The legislature’s Joint Budget Committee, which drafts the state budget, voted last week to move forward with the hour reductions. They also voted for other cuts to caregiver programs, including lowering the hourly rate some caregivers are paid, limiting children's ability to join a program that provides 24-hour-per-day support when they become adults and doubling the length of the program’s waitlist to 14 years.
Lawmakers can still make amendments to the proposed cuts, but time is quickly running out – they are statutorily required to finalize the budget in the next few weeks.
The population of family caregivers and the people they care for is small, but also particularly expensive and vulnerable to changes or reductions in services. Caregivers like Barret say, if finalized, the cuts will put their ability to support their family members and themselves in jeopardy.
Bonnie Silva, the Director of HCPF’s Office of Community Living, said the cost of family caregiver programs are becoming too expensive for the state to afford, whether through increasing enrollment or usage, and that the cuts are necessary to make sure Colorado can sustain them going into the future.
“When we look at Medicaid, in particular, we're growing at a rate where we will quickly consume a vast majority of our state's budget,” Silva said. “Failure to take action now in a measured and strategic way will undoubtedly result in the necessity for action that is blunt and devastating to this community and our system as a whole in the long term.”
Silva also pointed out that the cuts will bring Colorado’s caregiver benefits more in line with those offered in other states.
The Colorado Cross-Disability Coalition has been working with lawmakers to find cuts to caregiver programs that avoid more harmful impacts of larger cuts, such as eliminating entire programs.
“We recognize and understand that we have to be part of the solution, that cuts are going to happen,” said Julie Reiskin, the group’s co-executive director. “We don't feel like just fighting the cuts is a realistic thing. Our fear is that if we don't work with them, that they're going to come up with something that we really don't like, like this across-the-board cut.”
She added her organization is trying to balance the interests of the range of disability communities within Colorado, rather than a single group, even though that means making some difficult cuts.
But other advocates disagree with Reiskin’s approach.
Deana Cairo is the president of the Colorado Advocates for Adults with Intellectual and Developmental Disabilities and is compensated by the state for caring for her two adult children. She acknowledges that the state has to make some cuts, but said the ones moving forward would disproportionately impact caregivers and the people they care for.
“Those of us who have these higher support level people are in a real bind,” Cairo said. “We just don't really have any good alternatives, and that's part of the problem in the first place. And we've been trying to get the legislature to understand this.”
Cairo is worried the cuts will exacerbate an existing shortage of professional caregivers that family caregivers can rely on when they are unavailable. Critics also point out that, without family caregivers, many people with disabilities would end up in institutions or emergency rooms, both of which are expensive for the state.
Lawmakers on the Joint Budget Committee shared Cairo’s concerns.
“It just seems like, to me, that we’re just adding cuts on top of cuts to the people that probably need the services most, the people who are most medically fragile in our community,” said Republican state Sen. Barbara Kirkmeyer during last week’s committee hearing ahead of a vote on the proposed cuts. “They already told us it’s hard to get providers, hard to find nurses to help them out, and now we’re just going to cut those too.”
Kirkmeyer also pointed out that the caregiver cuts will save a relatively small amount of money compared to the billion-dollar hole in the state budget. She was one of two committee members to vote against caregiver hour and hourly rate reductions.
But ultimately, the six-member committee voted to move forward with the cuts, making it increasingly likely they’ll become a reality.
"There's just no way to balance the budget without making cuts that are going to impact people, whether it is their access to health care or the services covered, whether it is how well we are able to fund our K-12 system, how well we are able to fund our transportation projects across the state, what we’re able to do to address our our need for clean air and clean water,” said committee chair Democratic state Rep. Emily Sirota, who voted to move forward with the cuts.
“This is the bleakest it's been in my memory,” she added, referring to the budget situation.
