DOTHAN, Ala. – Mike Curtin, 75, has lived in nursing homes for more than three years. Even in normal times, it wasn’t an ideal living situation.
Almost four years ago, Curtin had surgery to remove a spinal tumor. It saved his life, but made it difficult to get around without a walker. His diagnosis requires ongoing care, and he estimates he’s had 110 appointments since his surgery, but he has friends who can shuttle him to the hospital and he manages his condition with a combination of prescriptions, herbal supplements and healthy food. Many of the other residents have late-stage dementia or require round-the-clock care.
Curtin misses the freedom of living independently. He can’t eat when he wants. And after COVID, he lost the ability to come and go, or to move freely around the nursing home, as it locked down to control the spread of the virus.
“I keep wondering, what am I doing here?” Curtin said.
Curtin has sought other options, including living on his own and in assisted living. But he found that Alabama offers few alternatives to nursing homes for seniors and disabled adults who qualify for Medicaid.
Jamie Harding, a spokeswoman for the AARP of Alabama, said new federal funds could help expand those options. President Joe Biden’s stimulus plan offers more funds for home and community-based care – if requested by Gov. Kay Ivey. In a letter, AARP State Director Candace Williams said the pandemic highlighted the need for increased options.
“AARP Alabama, on behalf of our 420,000 members and all older Alabamians, strongly encourages you to take advantage of new federal resources to expand access to in-home and community-based care,” the letter said. “With an estimated 2,166 COVID-related deaths occurring in Alabama’s nursing homes and long-term care facilities, 23 percent of deaths in our state, this help is urgently needed.”
Alabama’s Medicaid program pays for long-term care for low-income seniors and people with disabilities. For most, that means nursing home care. But Medicaid also pays for care at home through a waiver program capped at 9,355 clients. Jean Stone, assistant commissioner for the Alabama Department of Social Services, said about 2,000 to 3,000 people are waiting for slots to open at any given time.
Alabama nursing homes provide care for more than 22,000 elderly and disabled adults – although not all of them are on Medicaid. The state spends about 30 percent of its long-term care budget on home-based services versus 61 percent for nursing homes, according to a 2016 study.
The AARP has pushed for an expansion of home-based care. But that model doesn’t always work for those without family or others available to assist with care. Most people on Medicaid do not own homes where they can receive care.
The organization Disability Rights and Resources received federal funding to help move more people out of nursing homes and into homes where they can live with family, friends or independently.
“Nursing home transition is one of our core services”, said Daniel Kessler, executive director of Disability Rights and Resources. “Everyone deserves the right to independence, regardless of age or disability. Our staff works with nursing home residents to re-gain their independence – to identify and overcome barriers, to experience ‘the Power of Hope and Freedom’.”
Most states except Alabama and Kentucky offer limited care at assisted living facilities that serve people with fewer medical needs than nursing homes.
The Alabama Policy Institute, a conservative think tank, has urged the state to expand coverage for assisted living, which is less expensive and more flexible for people who don’t require intensive medical care.
“Alabama’s Medicaid system has no option for patients who are not completely independent but who require care involving less than nursing home-type assistance,” according to an institute brief. “This could lead to Medicaid beneficiaries being placed in nursing homes that provide more care than they actually require.”
Harding said aging adults have become more reluctant to enter nursing homes.
“Most people want to age-in-place and remain at home for as long as possible,” Hardin said.
COVID may have accelerated that trend. Nursing homes proved to be particularly vulnerable to outbreaks among frail residents at high risk of hospitalization and death.
Stone, who oversees the state’s home-based care program, said that while some staff and residents tested positive for COVID, no major outbreaks occurred.
“We were very lucky,” Stone said. “We would have periodic episodes and we would have a few pockets in places throughout the state. But most of our clients stayed safe.”
James Tucker, executive director of the Alabama Disabilities Advocacy Program, said his organization has long fought for more home-based options for disabled adults. Although the state has expanded the number of slots since 2019, his organization still hears from nursing home residents who want to move out and gain more independence.
Some counties have more services for home-based care, and others mostly rely on nursing homes, Tucker said. And some nursing home facilities make it easier than others to move residents out into independent living.
“There are advantages to the state,” Tucker said. “And there are also advantages to individuals, which is what we are interested in. People want and prefer to live at home if they can and for as long as they can.”
Leaders of the Alabama Nursing Home Association have recognized the growing desires of seniors to stay at home. In 2015, they partnered with several organizations and the Alabama Medicaid Agency to create a partnership between nursing facilities and home-based care to help more people remain at home.
“The goal of the [program] is to expand the number of people served by home and community-based services and provide medical care in the home in addition to the social services that have been traditionally provided,” said John Matson, a spokesman for the Alabama Nursing Home Association. “The number of senior citizens in Alabama is growing and the ICN is a way to serve more people while ensuring skilled nursing facilities are available for those who need 24-hour-a-day medical care.”
Still, about two-thirds of Medicaid-eligible seniors reside in nursing homes. Medicaid only offers 675 spots in a program designed to move people out of nursing homes and back into the community.
Curtin said his efforts to move out of the nursing home have gone nowhere. He lined up a waiver and a place to live, but it fell apart after an inspection revealed leaks and safety issues.
But he has reached out to the governor to urge her to apply for federal funding that might help him move out.
“There’s no reason for me to be here,” Curtin said. “And I hope that she will do this to help people like me.”
