For the past several weeks, Andrea Carr has spent long stretches of the night awake, unable to stop worrying. Carr is a personal support worker. She gets paid by Medicaid to help her daughter who is, in her words, an 8-year-old trapped in a 33-year-old’s body.
Carr is worried about what the looming federal budget cuts to Medicaid, part of a wide-ranging policy bill President Donald Trump recently signed into law, could do to her family’s stability.
Without the funding from Medicaid, she said, “We could be destitute in two months. We would be out in the street.”
Carr lives in the unincorporated community of Sprague River, with a population of around 70 people, an hour or so away from Klamath Falls. Across the state, caregivers of all types — those helping members of their own family, like Carr, to those caring for seniors or those with terminal illness — are worrying about reductions to Medicaid. That money helps pay their salary and in some cases, their own health insurance.
Earlier this month, the President signed a wide-ranging spending and tax bill known as the “big, beautiful bill.” The bill is paid for partially by making cuts to programs like Medicaid.
There are a lot of unknowns about how the changes to Medicaid could affect Oregonians. Some estimates put Oregon as one of the most vulnerable states, with more than 20% of people currently enrolled who could lose their coverage.
Oregon is also expected to take a hit because it relies on a high rate of provider taxes, which are levied on healthcare providers like hospitals.
Provider taxes are a crucial revenue source to pay for Oregon’s portion of Medicaid. The state provider tax dollars are matched by federal dollars and go toward funding Medicaid. Oregon may have to reduce the amount of provider taxes it levies under the new federal law, according to the health research publication KFF. Those dollars help pay for home-and community-based care programs.
The Trump administration said the “One Big Beautiful Bill” will not cut Medicaid, but strengthen it for those who rely on it. Disability advocates and others are worried that won’t be the case.
“We’re all bracing for the impact of Medicaid cuts — we don’t know exactly how they will impact Oregon, but we do know it’s going to be bad for people with disabilities,” Jake Cornett, executive director and CEO at Disability Rights Oregon, wrote in an email.
Cornett said Oregon has been at the forefront of ensuring those with disabilities can live full lives, hold jobs, build friendships and create their own future.
“Looking at the next few years, one thing is certain, we will not be forced back into institutions with the isolation, abuse, and neglect that comes along with those settings,” Cornett said.
All the uncertainty, Carr said, has brought its own turmoil.
“It’s totally turned my life and every other personal support worker in Oregon upside down,” she said.
In the most recent Oregon legislative session, which concluded on June 27, state lawmakers considered a measure to stabilize the caregiving population in Oregon. The workforce, which is responsible for taking care of some of the state’s most vulnerable, is often in a precarious financial position themselves. The bill would have created a new board charged with improving caregivers’ working conditions.
The measure envisioned a board whose members were appointed by the governor and overseen by an executive director. It would have had members who represent employers, employees and customers. The board would set pay and staffing standards for the some 50,000 caretakers in the state.
Despite support from top lawmakers, the union-backed bill failed.
Opponents of the measure said it created more unnecessary bureaucracy and would have given an unelected board a lot of power to set staffing and wage standards for the industry.
Lois Gibson, the executive director of the Oregon Resource Association, which represents those who provide services to intellectually- and developmentally-disabled people across the state, opposed the measure for many reasons. The association said the board would have duplicated work already being done, would have been costly to set up and its authority would have been too broad.
The most pressing way to stem the crisis, Gibson said, simply boils down to wages.
“It’s related to wages more than anything else,” she said. “We are just staying a bit ahead of workers in fast food and retail.”
But Melissa Unger, executive director of SEIU Local 503, which backed the legislative effort, said the union has spent the last decade pushing for rate increases for this workforce. With Oregon’s growing elderly population, it is crucial to figure out a more sustainable way to support caregivers, she said.
“The challenge is, this is a complex workforce that is government funded,” Unger said. “So the idea that legislators can come in every two years and know all the ins and outs (isn’t realistic).”
Putting both the workforce and employers in a room to tackle the challenges on an ongoing basis, she said, makes sense. Unger added the union plans to resurrect the legislation at some point.
Shaun Notdurft, a 57-year-old caregiver in Springfield, said he was supportive of the idea of a workforce standard board primarily so people in his occupation had a voice in the discussions. He spent more than three decades as a caregiver and was still making less than $21 an hour while working in a group home.
“The principal challenges that every (direct support professional) faces at every company is the company and rules from the state that need to evolve,” he said. “Even well-meaning companies, they don’t listen to us. They consider the workforce undereducated … and it’s extremely frustrating when you deeply care about the work.”
A spokesperson said in a statement that Oregon Gov. Tina Kotek has directed all state agencies to “urgently evaluate impacts of the federal budget to Oregon.”
Carr, who takes care of her daughter every day in Sprague River, has spent time trying to connect with politicians who are supporting slashing Medicaid.
“I’m not understanding what is going through these folks’ minds right now,” she said. “But I know what’s going through mine and it’s sheer, holy terror.”