3 days ago
These Are The States On The Brink Of A Caregiver Crisis — And Trump Medicaid Cuts Could Make It Worse
Some days are quiet and peaceful. Other days, Jenise Griffin's brother Michael Griffin spends hours talking to himself out loud or laughing uncontrollably. Auditory hallucinations, episodes of paranoia and other outbursts also aren't uncommon throughout the day.
Michael, 59, was diagnosed with schizophrenia in the 1990s, and spent 23 years at state hospitals and jails, including one in their hometown of Naples, Florida. For the past three years he has lived with Jenise, 67, in Riverview, a small city about 20 minutes from Tampa, where she has been his full-time caregiver.
Even though she works from home, balancing caregiving for Michael with her own busy work schedule has been a challenge for Jenise. 'I have to take care of his medications, doctors' appointments, therapists and case worker schedules, so his needs constantly interrupt my day,' she said. It has also taken a toll on her health: Jenise was diagnosed with bradycardia —a heart rate that's slower than normal — in December 2023 and had to get a pacemaker. She has moderate asthma and takes medication to manage her depression. 'The stress of taking care of him has made me sick,' she said.
Jenise is far from alone. Although it's difficult to determine how many caregivers there are in the United States, AARP estimates that there were 53 million in 2020. Caregivers can be family members or hired professionals, paid or unpaid, full time or part time. But unlike professional home health aides, the labor family caregivers provide is unpaid, and often invisible yet expected by other members of the family.
In many cases, the only support family caregivers receive comes from state or local programs that require jumping through multiple hoops in order to get the most basic services or financial assistance. According to a new report from the Columbia University Mailman School of Public Health, where you live can make all the difference—and 48% of states are on the brink of a caregiving emergency.
After assessing the urgency of local caregiving needs, the authors of the Columbia report, titled 'America's Unseen Workforce: The State of Family Caregiving,' classified all 50 states, plus the District of Columbia, into four categories: critical, high risk, safe for now, and well-supported. States in the 'critical' category include:
Florida
Alabama
Arkansas
Georgia
Louisiana
Nevada
South Carolina
Tennessee
States in the 'high risk' states are:
Arizona
California
Hawaii
Idaho
Kentucky
Maryland
Michigan
Mississippi
New Hampshire
New Mexico
North Carolina
Oklahoma
Oregon
Texas
Virginia
West Virginia
'These states didn't land in a crisis by chance,' Stacey B. Lee, professor at Johns Hopkins Carey Business School with a joint appointment at the Bloomberg School of Public Health, told HuffPost. 'The Columbia Caregiving Index shows a consistent pattern: a lack of paid leave, low Medicaid reimbursement rates, [Home- and Community-Based Services] HCBS waitlists, and the absence of caregiver tax credits.'
So why are some states faring so much worse than others? One reason for this, according to Holly Wiberg, Ph.D., assistant professor of operations research and public policy at Carnegie Mellon University's Heinz College, is that the current landscape of policies to support family caregivers is fragmented, with limited national coverage and a lot of variation on the state level.
'This fragmentation has multiple consequences,' Wiberg explained. 'First, caregivers have inconsistent protections with disparate impacts on their own lives and those of their patients. Second, this creates a challenging landscape to navigate, involving multiple agencies, which imposes a further burden on caregivers. The current model is unsustainable and places an undue burden on caregivers, both unpaid and underpaid.'
That's been the case for Elizabeth Miller, 53, of Georgia, who spent years juggling caring for her aging parents while raising school-age children and working full time. 'They were some of the most exhausting and emotionally challenging years of my life,' she said. 'I felt completely overwhelmed, isolated and unprepared. I had no prior caregiving experience to draw from, and every day felt like a steep learning curve.'
Trying to balance caregiving with parenting and a career meant a demanding schedule for Miller. 'I constantly felt pulled in two directions — guilty when I had to step away from work to care for them, and distracted and depleted when I was at work, worrying about everything that still needed to be done at home,' she said.
What Miller and Jenise experience likely sounds familiar to anyone who has been a family caregiver. In fact, it's in line with the findings of a 2023 study from The Arc of the United States, in which 90% of participants reported some impact on their employment related to their caregiving responsibilities, while 54% indicated that they felt 'very' or 'extremely' stressed as a caregiver.
After both her parents passed away, Miller became a support caregiver for her 62-year-old brother, who was born with an intellectual disability and autism spectrum disorder (ASD).
'The challenges are different now, but just as complex — and still incredibly isolating,' Miller said. 'There are few resources tailored to older adults with developmental disabilities, and even fewer that support sibling caregivers. Despite working in the care economy for over a decade, I still find navigating care for my brother incredibly frustrating and unnecessarily difficult.'
Situations like Miller's and Jenise's aren't unusual in Georgia and Florida, nor in other parts of the country. 'The United States remains one of the least supportive high-income countries for caregivers,' Lee said. 'Policies fall short because they were never built to treat caregiving as essential labor. They assume it will happen informally, unpaid, and out of view, usually by women. That's not support — that's systemic erasure.'
According to Lee, the systems currently in place assume that caregiving is 'endless, free, and invisible.' Plus, as Wiberg pointed out, caregiving roles are not equally distributed across the population. 'The burden falls hardest on women, especially Black and Latina women, and on low-income families with no access to institutional support,' Lee said.
On top of all the emotional and logistical challenges of caregiving, it can be a huge financial strain on family members — who are typically paid little or nothing for their services. In Georgia, for example, family caregivers like Miller can only receive compensation if the care recipient qualifies for a Medicaid waiver — a process she says is grueling, confusing, and comes with long waitlists.
'I believe that any family caregiver who is actively providing care and can demonstrate it should be eligible for compensation and tax relief, regardless of Medicaid status,' she said. 'We are saving the system money — yet paying the price physically, emotionally and financially.' Miller is absolutely right: The Columbia report estimates that the labor of the country's unpaid caregivers is valued at $890.56 billion.
But the countless hours that family caregivers essentially donate to the government don't seem to factor into financial support for caregivers and those requiring care.
Each month, Jenise's brother Michael gets a $932 disability payment from Social Security and about $132 in food stamps. 'He is 270 pounds, so that doesn't cover the food he eats monthly,' she said. 'He had been giving me $400 a month, but I spend much of that on extra food, his pharmacy co-pays, his life insurance, and other necessities.'
And like so many others who require care, Michael depends on Medicaid for health care. But Jenise and other caregivers fear that a reduction in benefits is imminent.
That's at least in part because in a few short months, the Trump administration has been taking significant steps towards dismantling Medicaid as we know it. At this point, it's unclear how much damage these laws and policies will do, but it's safe to say things won't be getting better.
If signed into law, the so-called One Big Beautiful Bill Act, which passed in the House of Representatives on May 22, would make the biggest cuts to Medicaid in the program's 60-year history. It's estimated that the bill would reduce federal Medicaid spending by $625 billion, causing 10.3 million people to lose their Medicaid coverage by 2034.
'The caregiver crisis is fueled by years of underinvestment — and it's about to get worse,' said Kim Musheno, senior director of Medicaid policy at The Arc of the United States.
With caregivers already burned out and stretched thin financially, even minor cuts to Medicaid would make a major difference.
'If it becomes law, it will blow a hole in the safety net,' Musheno explained. 'Medicaid is the main source of long-term care in this country, including home- and community-based services that allow people with disabilities to live at home instead of in institutions. And when states face cuts, history tells us what happens: services that help families — like respite care, personal care assistants, and other supports — are the first to go.'
Lacking adequate support from the state or federal government, caregivers like Miller have formed their own communities. 'There is a beautiful, grassroots network of caregiver-led organizations out there offering real help,' said Miller, whose Atlanta-based group, Happy Healthy Caregiver, helps caregivers find local resources and navigate the complicated systems in Georgia.
But these groups are no replacement for laws and policies that provide actual resources and programs for caregivers. 'Without sustainable financial support and infrastructure, I worry these vital lifelines will burn out, just like so many caregivers do,' she explained. In order for that not to happen, Miller knows what she needs.
'What I need most as a caregiver — and what so many of us are lacking — is time back,' she said. 'Real respite options, financial compensation that reflects the value of our work, and a community of support that truly understands what we're navigating every day.' According to Miller, true respite is more than a day off. 'It means having the financial and practical resources in place to ensure your loved one is safe and well cared-for while you take a real break,' she said. 'Without that, respite is just another wishlist item.'
So what would it take for caregivers to get actual support, in the form of programs and services that would genuinely make their lives easier? 'The biggest issue is simple: funding,' Musheno said. 'Good ideas don't go far if there's no money to make them real.'
There also has to be a general shift of mentality, away from viewing caregiving as expected and invisible labor, and toward it being seen as legitimate and essential work. 'Unless we commit to federal caregiving infrastructure — paid leave, portable benefits, caregiver tax credits, and living wages for home care workers — we are not solving this crisis. We are institutionalizing harm,' Lee said.
Though the situation is looking especially bleak at the moment, there are things you can do to help support caregivers. First, Miller suggests talking to caregivers to get an idea of what they're going through, and sharing their stories. You can also let your voice be heard through the ballot box by voting for candidates who support paid family leave, caregiver tax credits and respite programs.
Additionally, Lee recommends organizing within churches, faith-based networks and community health centers. 'These institutions often carry more political and cultural weight in Southern states than formal lobbying efforts, and they're increasingly vocal on elder care and caregiver equity,' she explained. You may also want to seek out volunteering opportunities with organizations for caregivers.
Finally, if you know a caregiver, ask how you can support them directly. This might mean grocery shopping, running errands, or spending time with their loved one so they get a much-needed break.
'At the end of the day, caring for the people we love shouldn't be this hard,' Miller said. 'The system should work with us — not against us.'
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