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Struck by lightning on a camping trip while in her 30s, Lorena Myers has struggled with nervous-system problems and mobility issues ever since, making basic tasks like changing bedsheets difficult.
Now 77, the retired social worker continues to live independently in a senior apartment complex in the small central Michigan town of Clare, even as her health has deteriorated. She does so thanks to in-home help from a home care agency.
Three days a week, workers assist her with activities like showering, vacuuming and doing laundry. The agency has arranged rides to doctor appointments, helped her get a motorized wheelchair and even bought a new harness for her service dog, a black Lab named Diamond, who picks up her phone, glasses and other things she drops.
“There would be no way” she could live on her own without that help, Myers acknowledges. “My arms and legs are almost useless.”
For decades, people with low or limited incomes like Myers who needed long-term care services had few choices besides nursing homes or other institutional settings. But across the country, states are spending a larger percentage of long-term care funding on services that are provided in individuals’ homes and communities, according to the latest AARP Long-Term Services and Supports State Scorecard, which uses 50 spending, quality and access indicators to rank each state’s long-term care system.
EXPLORE: AARP Long-Term Care Scorecard
The new data shows that for the first time since AARP began publishing the Scorecard in 2011, more than half of Medicaid long-term care dollars nationwide for older people and adults with physical disabilities went to home- and community-based services (HCBS) instead of to nursing homes or other types of facilities.
“This is a big deal. We are seeing a breaking point,” says Susan Reinhard, senior vice president of AARP’s Public Policy Institute, which published the Scorecard in September.
In the Midwest region, Minnesota, Wisconsin, Illinois, Ohio and Missouri ranked among the top 20 states in the percentage of Medicaid long-term care dollars going to HCBS, the Scorecard shows.
Minnesota spends about 72 percent on HCBS for older people and adults with physical disabilities. Kari Benson, executive director of the Minnesota Board on Aging, says that for the past two decades, state leaders have consistently demonstrated support for the state’s long-term care system.
“They really get it,” Benson says.
DEMAND ON THE RISE
Earlier this year, the Minnesota Legislature gave the state’s Live Well at Home program a one-time infusion of $4.6 million, which AARP advocated for, in addition to its regular two-year budget of $8 million.
The program for older Minnesotans has helped Marilyn Rhodes, 75, remain in the house in southeast Minnesota where she has lived for more than 40 years. She gets meals delivered five days a week, as well as help with her flower garden, raking in the fall and other chores.
Rhodes, a retired public-school employee, says taking care of her own parents in assisted living and in a nursing home before their deaths strengthened her resolve to remain at home “until my last day on Earth.”
The shift to home- and community-based services comes as demand for such care has increased, fueled in part by the COVID-19 pandemic that took a horrific toll on nursing home residents. Polls have also shown that most older Americans want to age in place.
With the nation’s population of older adults growing, the chasm between the availability of and access to HCBS is poised to widen.
“We’re going to see a dramatic increase in the 80-plus and 85-plus population” as the boomer generation gets older, says Robert Applebaum, a senior research scholar at Miami University’s Scripps Gerontology Center in Ohio. “So the demand for long-term services ... is going to be tremendous.”
One way states are improving HCBS: giving more older adults control over their own care, allowing them to choose what services they receive and who provides them.
Nationwide, “self-directed” care programs increased enrollment by 10 percent or more in 35 states, the AARP Scorecard shows. In the Midwest, four states—Michigan, Iowa, Missouri and Kentucky—have increased enrollment in such initiatives in recent years, according to the Scorecard.
It’s empowering for people, says Lisa Alecxih, who focuses on long-term care issues at The Lewin Group, a health care and human services policy consulting firm.
“If you’re hiring and firing your worker, then you have the ultimate control over who is coming into your house and supporting you,” Alecxih says.
WORKFORCE CHALLENGES AHEAD
As states continue to shift long-term care funding away from institutions and into homes and community settings, they face ongoing barriers, including persistent worker shortages made worse by the pandemic.
The AARP Scorecard shows that in every state, the median wage for direct-care workers, such as home health aides, was lower than it was for other occupations with similar or lesser entry requirements. Low wages are compounded by the fact that some direct-care workers may receive little training and few or no benefits for jobs that are both physically and mentally demanding.
Some states are tackling the issue by boosting pay and increasing supports for such workers. Earlier this year, Minnesota lawmakers voted to increase wages for new direct-care employees represented by the SEIU from $15.25 to $20 per hour by 2025.
In Wisconsin, the state Department of Health Services is hoping to train 10,000 people as certified direct-care professionals through a free online program, offering a $250 bonus to those who complete it and get a job with an eligible HCBS employer.
States are raising wages and increasing benefits, but demand for HCBS is only continuing to grow, says Carrie Blakeway Amero, director of long-term services and supports at the AARP Public Policy Institute.
“They need to keep doing it and double their efforts,” she says.
Hilary Appelman, a Pennsylvania-based writer, was an Associated Press reporter for more than a decade, covering a range of domestic and international issues. She has written for the Bulletin since 2011.
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