Who is in Medicaid? Popular programs may be in the chopping block
72 million people in the United States are enrolled in Medicaid, a federal and state health insurance program for people with disabilities or low incomes.
Aisha Adkins, 40, had little opportunity to breathe between her mother’s death and her father’s diagnosis of vascular dementia. Both happened in 2023.
Adkins, Georgia, cared for her mother for 10 years after her mother was diagnosed with frontotemporal degenerative dementia. At first, caring for the mom meant reminding her to turn off the stove after helping with cooking and washing. Adkins then said, which meant bathing her, dressing her and feeding her.
Being a full-time family caregiver also meant putting some of her own needs by her side. She went for several years without work and without health insurance while caring for her mother. And Adkins said he found it difficult to maintain friendships and other relationships while caring for his parents. Now her father is her number one priority.
“I want to get married one day,” Adkins said. “I don’t know if that’s what caregivers are full-time responsibility and that just because they don’t have the ability to understand what caregivers mean, what it looks like, the sacrifices they take and they aren’t always your number one priority.”
A new study by Columbia University’s Postal Public Health School found that nearly half of American states are in nursing emergency, with the worst being in the South. In a study sponsored by Osca American drugs, researchers have developed a new scorecard to assess the urgency of local care needs. The state score is based on measures such as the number of long-term care beds available, the number of paid health aid per resident, the percentage of people over 65, the number of families paying more than 30% of their income for a home, AARP long-term care rankings, and state dementia individuals.
From there, the researchers divided the condition into four categories: critical, high risk, safe now and well supported. Alabama, Arkansas, Florida, Georgia, Louisiana, Nevada, South Carolina and Tennessee are states deemed critical and in need of immediate action.
“All states are not surprised to us that caregivers living in their states should do to ensure that they need what they need,” said Nicole Yorwick, Chief Program Officer of Compassion for Generations. “Family caregivers are often plagued by catastrophes due to lack of support systems.”
Other studies point to worsening health outcomes for people in southern states, including a 2023 study by the Alzheimer’s Disease Association that found higher cases of Alzheimer’s Disease Dementia in the eastern and southeastern regions of the United States. Commonwealth Fund’s 2023 scorecard on state health system performance ranked states based on several factors, including preterm birth rates and access to healthcare and affordability. The lowest states reported were Mississippi, West Virginia, Oklahoma, Texas and Arkansas.
“We’re excited to be aware of this,” said John McHugh, Chief Researcher and Apart-time Assistant Professor of Health Policy and Management in Columbia. “We are looking for more and more individuals without providing any kind of support or compensation or anything along those lines.”
Jeron Mickle, spokesman for Nevada’s Department of Aging and Disability Services, said the department will support unpaid family caregivers by providing financial support through state and federal programs and partnering with advocacy groups such as the Nevada Respite Care Coalition, which created the Nevada plan to support family caregivers in 2022.
“Around $2.5 million is given to community organizations each year, providing respite care and other services to people over the age of 60. Additionally, the state is working on two federal grants to raise awareness of nature and improve access to respite care in Nevada.”
There is caregiver programming in the Southern state, but expanding Medicaid is extremely important, experts say
More than 125,000 people live in South Carolina with dementia, according to the state’s Alzheimer’s case.
“Four years ago, we knew we were dealing with the growing number of people diagnosed with dementia and the countless amount of care our caregivers were providing. Our agency needed to look closely at how to meet these requirements.”
That’s why the department established the caregivers and Alzheimer’s Division, Mann said. The state also established a Family Caregiver Assistance Program in 2001, and “focused on rest” to help family caregivers. In 2022, the state launched a Dementia Care Specialist Program aimed at providing education and support to people living in caregivers for dementia and their families. The state has plans to expand its program this year, Mann said.
“The program is strategically located within our community, allowing people with early diagnosis, as well as families, to have a place within the community for resources to seek,” Mann said.
But South Carolina, like several other states in the south, is one of ten states that did not adopt the expansion of Medicaid under the Affordable Care Act. Medicaid helps caregivers as much as they help patients, said Christina Irving, director of client services for the Family Caregivers Alliance.
“Medicaid offers important home and community-based services that are essential to family caregivers and the people they care for,” Irving said. “These programs can help elderly people and disabled people stay home and out of the facility and even provide direct compensation for family caregivers, especially for those who have had to quit their jobs to provide care.”
Jorwick said Medicaid is one of the most important systems for caregivers, and its expansion is “a victory/win for caregivers and the entire care system.” Transgenerational Compassion is one of 730 national, state and local organizations, supporting letters to members of the House urging them to reject the Medicaid cuts proposed in President Donald Trump’s pending budget adjustment package.
The law is still far from the finish line. Once you pass through the gauntlet of your home, you will need to pass floor votes in the committee and the Senate. Policy details may be tweaked at any point along the way.
“It’s an incomplete program, but it’s the only game in town when it comes to funding long-term care,” Yorwick said of Medicaid. “The choice not to expand will have a direct impact on the integrity of the system and the well-being of the caregiver.”
Georgia also hasn’t expanded Medicaid, and the state has also had one of the biggest shortages of home health aides in the country, the Columbia report found. Adkins said, “It was extremely difficult to access support and services, especially at first.”
Her mother had a caseworker, but the agency had so much sales that it took her years to find help. They were ultimately able to secure first at-home care 20 hours a week and 40 hours a week towards the end of her mother’s life.
Ellen Brown, communications director for the Georgia Department of Human Services, said the state’s Aging Services Department will “prioritize and support caregivers in a variety of ways,” including community service providers contracted by area agencies.
The department also has a large number of dementia care professionals distributed throughout the state to conduct stress assessments for family caregivers and provide information and support to dementia caregivers.
The Aging Services Department contracted with the University of North Georgia’s Institute of Healthy Aging in 2025 to conduct the Georgia Arespite Care Research. The purpose of this project is to provide policies, programs and best practices in other southeastern states. “It could be implemented in Georgia to provide services more effectively in Georgia,” Brown said.
“The findings of this study will help provide opportunities to improve and strengthen future data collection, program initiatives, and Georgia’s caregiver infrastructure,” Brown said.
A spokesperson for the Alabama Department of Senior Services said, “We have taken meaningful and aggressive steps to address the needs of caregivers, particularly those who care for the elderly, grandchildren or other relative children, those affected by dementia, and caregivers affected by the opioid epidemic, particularly caregivers, caregivers, and other caregivers, and the Alabama CARES program has been supporting family caregivers since 2000, and the state also has local agencies on aging, such as Georgia. The state has a variety of other partnerships supporting caregivers, including programs targeting caregivers for people with Alzheimer’s disease and related dementia.
What does the future of care look like? “I’m worried.”
Adkins’ experience is not unique. And in almost half of the country, he said additional budget cuts to the healthcare system could “actually push these states above threshold and into a full-scale crisis.”
“Most of that comes down to a much stronger policy environment around aging,” he said.
Without state support, Adkins said she and other caregivers were dependent on each other. She recently launched her Instagram account, Colorge of Color Collective. She hopes to encourage other family caregivers to caregivers of color and guide them to be beneficial resources.
Adkins’ father is currently in the early stages of dementia. He mainly takes his medicine and needs reminders to help him find the misplaced key. But Adkins knows that his condition could progress soon.
Her father does not want her to experience the same challenges she did when she cared for her mother, and does not want Adkins to take care of him full time. However, Adkins said she wasn’t sure if she was happy with the alternative.
“I worry about his safety. I worry about his ability to take care of him as if I care for him,” she said. “And I’m still struggling to see what the future of care looks like.”
Madeline Mitchell’s women and the role of USA Today’s nursing economy covering the caregiving economy is supported by a partnership with Pivotal Ventures and Journalism Funding Partners. Funders do not provide editor input.
You reach Madeline with memitchell@usatoday.com and @maddiemitch_ x.
