Home Care Wasn’t Ready For the Climate Crisis—Even Before Trump’s Cuts – Mother Jones

In 1981, Congress amended the Social Security Act to help millions of disabled people and older adults move out of institutions. Through home and community-based services waivers (HCBS), some 7 million Medicaid recipients now receive support that lets them stay in their communities. But after years of neglect under both parties, experts fear that sweeping cuts to both Medicaid and FEMA—especially under the GOP’s most recent budget bill—may be the final straw for the often small, privatized, and often budget-strapped providers behind that care.

That’s especially true as heat waves, hurricanes, wildfires and other climate events ramp up globally: almost a tenth of Medicaid recipients rely on HCBS, many in climate disaster–prone areas that have been targeted by the Trump administration for cuts. The administration’s attacks on Medicaid-based home care have focused on states like with Democratic governors like New York, California, Minnesota and Maine, all of which face risks from extreme weather—but almost all states are expected to cut home care funding as a result of federal Medicaid cuts.

HCBS providers, which range from smaller nonprofits to large, private equity–backed organizations, are essentially the coordinators of many Medicaid recipients’ independent living. Few have the flexibility to pour more funds into advance planning for growing risks like fires, floods, and hurricanes—a role that FEMA would once have done more to shoulder.

But the Trump administration has moved to, in effect, dismantle the agency, rolling back key services like FEMA’s Building Resilient Infrastructure and Communities program and moving to lay off thousands of workers (a plan that was put on hold), including those who could coordinate with home care providers for contingency planning.

That’s made clear to health care providers that their patients will shoulder even more of the risk in climate emergencies—as in Oregon, where FEMA sought to roll back a $14 million grant to a hospital for a tsunami shelter, KFF Health News reported.

“Oregon needs more shelters like the one that Columbia Memorial is building, emergency managers say,” reporters Hannah Norman and Daniel Chang wrote. “Hospitals in the region are likely to incur serious damage, if not ruin, and could take more than three years to fully recover in the event of a major earthquake and tsunami.”

Almost 200 hospitals across the country face similar risks, according to another KFF Health News report. But HCBS providers are generally smaller, less resourced, and even more widely geographically dispersed than hospitals, compounding both the risks and the resources needed to address them. They face emergency situations more frequently than in previous decades, depending on their locations, and more than other providers, HCBS providers face special challenges in getting reimbursed for the additional work and expenses that they contend with after emergencies, including those caused by climate change.

“Most states have some sort of individualized service plan, or a person-centered plan, which is approved in advance, and then the reimbursement is tied to the services that are outlined in the plan,” said Kim Musheno, The Arc’s senior director of Medicaid policy. “The payment model is just not designed for a sudden demand or to pay for services that are outside of that approved plan.”

“Until we get serious about ending the bias in institutionalization, hoping that home and community-based services are going to adequately meet the potential safety issues that come with increases in extreme weather….we’re doing the absolute opposite of what’s needed,” said Marcie Roth, the chair of the National Advisory Committee on Individuals with Disabilities and Disasters and a senior advisor to FEMA under the Obama administration.

Some states are more prepared than others: In California, for instance, regional centers under the state’s Department of Developmental Services coordinate with HCBS providers in their area during wildfires. Several have made permanent modifications to their HCBS waiver program to acknowledge the devastating risk of increasing extreme heat events: seven states, including California and Texas, cover air conditioning costs. And states can apply for broad federal waivers for more budgetary flexibility around climate disasters, which they could in theory pass on to providers—but with states also facing a major public health budget crunch driven by federal cuts, those concessions may not be much comfort.

Federal infrastructure around in-home care, especially in disasters, was already lacking, Roth said—and under the Trump administration, she added, it’s heading backwards. Roth, who is also executive director and CEO of the World Institute on Disability, told me that HCBS workers generally do not have the federal-to-local support that they need when climate disasters do happen.

“I don’t see any efforts in which people who are paid to support people with disabilities have the support that they need so that they can come to work,” Roth said. Home care workers face the brunt of the impact of cuts, which leave them struggling to secure livable wages or support for expenses like transportation in hazardous weather. According to KFF, more than half of employees providing direct home care for those on HCBS waivers across 34 states make less than $20 an hour, rendering many home care jobs unappealing and understaffed.

Brian Ketay runs ICL Texas, a network of smaller homes for disabled people in South Texas, where the cost of a climate event that involves evacuations—generally to hotels—could run into the tens of thousands of dollars, he told me. Medicaid recipients “have increased staffing needs” in disasters, Ketay said, which cuts into funds that could otherwise go to wages and benefits.

In Louisiana, which is grappling with even more frequent and severe hurricanes, HCBS providers can face 16-hour work days on phone calls, ensuring Medicaid recipients’ safety and trying to coordinate evacuations. Erica Smith Buchanan, the executive director at a large HCBS provider in the state, says some staff have quit due to the intensity during hurricane season.

“We are not very good at the state emergency planning level, including around climate and thinking about planning for disabled people of all ages,” said Alison Barkoff, the director of George Washington University’s Hirsh Health Law & Policy Program and a former senior official in the federal Administration for Community Living during the Biden administration.

In some cases, as during the height of the Covid pandemic, those failures have pushed people back into better-staffed—but more restrictive—institutions. Roth said she advised the Department of Health and Human Services to close these gaps under the Biden administration. It didn’t happen.

“We are certainly no better off, and probably a whole lot worse off…because of our failure to ensure that federal funds are being spent in ways that actually do support communities, to support the people,” Roth said.