Turning away from nursing homes, to what?

Regina Smith has dedicated her career to keeping seniors out of nursing homes. A geriatric social worker at an adult day care network in Indianapolis, she strives to provide services that can help people live independently.

>> Mark MillerThe New York Times
Published : 3 April 2021, 04:58 AM
Updated : 3 April 2021, 04:58 AM

But Smith’s expertise didn’t keep her own mother from a nursing home — or prevent the worst from happening when the pandemic struck last year.

Smith’s 75-year-old mother, Katherine, suffering from dementia and other serious conditions, moved to a home in town in 2019. Last April, she contracted COVID-19 and died just a few days later. “The very thing I fight for for others I was not able to do for my mom,” Smith said.

That trauma has made Smith much more sceptical about institutional care settings, and inspired her to work even harder to find solutions that keep clients at home. “We deal with a lot of people who have dementia or Alzheimer’s, and the family members are looking for memory care as soon as possible,” she said. “I just share my story with them.”

COVID-19 had taken the lives of 181,000 people in US nursing homes, assisted living and other long-term care facilities through last weekend, according to the Kaiser Family Foundation — 33% of the national toll. All types of nursing homes, no matter their quality, have been hit, according to an investigation of Medicare’s rating system by The New York Times.

The troubles have intensified a spotlight on long-running questions about how communities can do a better job supporting people who need care but want to live outside an institutional setting.

Becoming More Age-Friendly

Demand for such care has declined sharply during the pandemic.

The occupancy rate in nursing homes in the fourth quarter of 2020 was 75%, down 11 percentage points from the first quarter, according to the National Investment Center for Seniors Housing & Care, a research group. The reduced demand was tied to COVID-19, deaths from the virus and a steep decline in elective surgery that requires follow-up care in a skilled nursing facility, according to the group’s research.

“We’ve been seeing increasing levels of calls to our member agencies and other community aging providers from people who have Mom or Dad in a nursing home or an assisted living facility, and now they want to get them out and bring them home,” said Sandy Markwood, CEO of the National Association of Area Agencies on Aging.

The shift may not be permanent, but this much is clear: As the aging of the nation accelerates, most communities need to do much more to become age-friendly, said Jennifer Molinsky, senior research associate at the Joint Center for Housing Studies at Harvard.

“It’s about all the services that people can access, whether that’s the accessibility and affordability of housing, or transportation and supports that can be delivered in the home,” she said.

Job 1: Finding a Place to Live

A major shortage of age-friendly housing in the United States will present problems for seniors who wish to stay in their homes. By 2034, 34% of households will be headed by someone over 65, a jump from 26% in 2018, according to the Harvard centre, and the share of households age 80 and over will grow even more rapidly.

Yet in 2011, just 3.5% of homes had single-floor living, no-step entry and extra-wide halls and doors for wheelchair access, according to Harvard’s latest estimates. “And that figure doesn’t say anything about walk-in showers or accessible kitchens that people need,” Molinsky said.

Offering a variety of age-friendly housing is crucial, she added, including apartments with some level of services. “Those options are very limited, especially for people with middle or lower incomes or who live in high-cost or low-density locations,” she said.

Affordability is a critical issue, especially for renters. Nearly 10 million retirement-age households spend more than 30% of their income on housing, creating a cost burden, according to the Harvard researchers.

Health Care at Home

Perhaps the biggest challenge is how to care at home for seniors with more intensive health needs.

“It’s one thing to make communities into better places to be when you’re in your 60s and 70s and in good health. The question of how to make that work for people in their 80s and 90s is much bigger,” said Anne Tumlinson, CEO of ATI Advisory, a consulting firm focused on health care for older adults. She is also the founder of Daughterhood.org, a network of local support circles for caregivers.

Medicare does not pay for most long-term care services, regardless of where they happen; reimbursement is limited to a person’s first 100 days in a skilled nursing facility.

Medicaid, which covers only people with very low incomes, has long been the nation’s largest funder of long-term care. From its inception, the program was required to cover care in nursing facilities but not at home or in a community setting.

“There’s a bias toward institutions,” said Judith Solomon, a senior fellow specialising in health at the Center on Budget and Policy Priorities. “People can get care in a nursing home, but can’t necessarily get that same care in the community — even when that would keep them healthy and safe.”

Medicaid funding has shifted in recent years, with 56% of spending on long-term services and supports going to home and community-based care in 2018, according to federal data. That was up sharply from 20% as recently as 15 years ago, Solomon said.

States are permitted to cap Medicaid enrolment, and 820,000 people in 41 states were waiting to enrol in 2018, on average for 39 months, according to the Kaiser Family Foundation. But growth will accelerate because the new American Rescue Act raises the federal share of states’ spending on home and community-based services by 10 percentage points, amounting to $12.7 billion for one year starting this month. States can use that money to expand a broad range of rehabilitative services, including personal care, health care and transportation.

And the $2 trillion infrastructure plan proposed by President Joe Biden this week includes spending $400 billion over eight years to bolster long-term care outside of institutional settings.

One program that could expand is PACE, or Programs of All-Inclusive Care for the Elderly. PACE, funded by Medicare and Medicaid, provides medical and social services so frail seniors who would qualify to be in a skilled nursing facility can continue to live independently. Most are low income and eligible for both Medicare and Medicaid.

The PACE provider manages all of a person’s health care needs that are covered by Medicare or Medicaid. “It becomes your form of health care coverage,” said Peter Fitzgerald, executive vice president for policy and strategy at the National PACE Association, a membership and advocacy organisation.

States decide whether to offer PACE programs; currently 30 have programs serving about 55,000 people, Fitzgerald said.

Where Change Is Happening

Some states and regions are moving to address the needs of their aging citizens.

In January, Gov Gavin Newsom released a master plan for aging for California. It calls for creating, over the next decade, millions of housing units for older residents, 1 million high-quality caregiving jobs, and inclusion goals such as closing the digital divide and creating opportunities for work and volunteering. Colorado, Massachusetts, Minnesota and Texas have already established master plans, and a number of other states are working on them.

California’s plan also calls for a new state office focused on finding ways to innovate using Medicare funds, especially for low-income, chronically ill seniors who also participate in Medicaid.

“We think this can really help our state by bringing together medical and nonmedical services for people who want to live well in the place they call home,” said Gretchen E Alkema, vice president of policy and communications at the SCAN Foundation, a nonprofit focused on elder care that has worked with California and other states on age-friendly models.

In the Atlanta metropolitan area, which began tackling these issues head-on in 2002, 1 in 5 residents will be 65 or older by 2050, according to the Atlanta Regional Commission, a planning organisation. The group has responded by developing a “lifelong communities initiative” to raise awareness in local government of the need for housing that is affordable and convenient to sidewalks, shopping and transportation.

Atlanta and four suburbs have joined an AARP-sponsored network of age-friendly communities, and several city neighbourhoods have created plans.

“Many of our communities have really taken the lead and run with it,” said Becky Kurtz, managing director of the commission’s Aging and Health Resources Division.

Over the past two decades, the commission has made grants of $254 million to more than 120 communities for transportation projects. Grant recipients have also used the funds to change their mix of housing and to make improvements to schools, parks, senior centres and libraries.

Innovations are also occurring nationally at the grassroots level. A network of nonprofit “villages” devoted to providing support and a social network to people who want to age in their homes has been growing for years; it has 270 member groups and 70 more in development, according to the Village to Village Network, a nonprofit group that supports the villages.

Villages typically cover a specific neighbourhood or town, but they are virtual support organisations. “It’s really a neighbours helping neighbours” approach, said Barbara Hughes Sullivan, the network’s national director.

Despite these innovations, few experts think nursing homes will disappear anytime soon — although many see them as ripe for rethinking. Even Smith still views the nursing home as the right move for her mother.

“I don’t know that there’s a one-size-fits-all solution, and I’m not against long-term care facilities,” she said. “But I don’t have the red carpet out for them, either.”

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