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Long-View Solutions

Lessons from COVID-19 could reshape the future of long-term services and supports.

By Sarah Fister Gale

A woman wearing a blue-grey shirt stands in her kitchen, preparing food while looking at the camera.

Tobias Gonzales/Unsplash

For seniors and people with disabilities and chronic illnesses, long-term services and supports (LTSS) can be a lifeline. But COVID-19 put the system to the test. LTSS patients had been more vulnerable to severe outcomes from the virus — and more likely to be living in environments that increase the risk of exposure. More than 26,500 long-term care facilities in the U.S. reported cases of COVID-19 by the end of last year. While these facilities represented 6% of the country’s total cases at that time, they resulted in 40% of total COVID-related deaths, according to the Kaiser Family Foundation (KFF).

The Centers for Disease Control and Prevention (CDC) had recommended prioritizing long-term care residents when COVID vaccinations began in December 2020, but early efforts had lagged. Of the 3.2 million doses distributed in early January for use in long-term care facilities, only 13% had been given by the same time, according to the CDC.

The numbers only add to the chorus of demands to reimagine LTSS, adding to evidence that LTSS patients need greater flexibility in where and how they receive care.

“The infection and death rates in nursing homes definitely caught people’s attention,” says Cindy Mann, partner at Manatt, a professional services firm that works with clients to develop strategies on health reform. “It reinforced the importance not only of efforts to improve quality and safety in nursing homes but also efforts to help people live safely in their homes and communities.”

Hero Images/Adobe Stock

Caretaker with elderly man.

The Pivot to Community

Cost and demand for LTSS care has been skyrocketing as the U.S. population ages. An estimated 42% of people 85 and older need LTSS, according to AARP, and providing these services was already taking a heavy toll on Medicaid, the largest LTSS payer in the country. And that was before the pandemic.

The idea is to connect medical and behavioral providers with family members, neighbors and other community members.

Many states had already pivoted to managed long-term services and supports (MLTSS) as part of a strategy for expanding home and community-based services and a larger shift to value-based care. Today, 25 states have MLTSS contracts, up from just eight states 15 years ago. And spending on home and community-based care now makes up more than half (57%) of total Medicaid LTSS spending, according to KFF.

The idea is to connect medical and behavioral health providers with family members, neighbors and other community members who may be involved in the individual’s care. Compared to institutional care, MLTSS cuts cost and restrictions, eliminating the need for room and board, and allowing patients to receive care at home. Done well, MLTSS also can reduce the risk of infection spreading in congregate settings, which is particularly appealing in the age of COVID-19, as well as promote integration of care, Mann says.

“Out of necessity, we’ve seen the strengthening of home and community-based services to help people remain in their home, where they are generally safer from the virus than in a congregate setting,” says Sharon Alexander, president of LTSS solutions at AmeriHealth Caritas. The focus now should be on extending the reach of service coordinators and care teams to better support these in-home care solutions, “so people can live as full a life as possible.”

Seeking Value

As long-term services and supports (LTSS) consume a growing portion of health care spending, more states are taking new approaches to boost value.

14 million
adults in the U.S. need LTSS (as of 2018)

30.6%
of all Medicaid spending is for LTSS.

57%
of Medicaid LTSS spending covers home and community-based services – surpassing institutional care.

$235 billion
Total national spending on LTSS in 2017

57%
Medicaid

4%
private long-term care insurance

23%
out-of-pocket

16%
other

90%
of adults with LTSS needs receive care in the community – at home, in assisted-living facilities or adult day programs.

10%
receive care in nursing homes.

New Ways of Thinking

Despite the advantages, delivering quality care at home is fraught with challenges, including an insufficient labor pool, and limited infrastructure, training, housing and payment strategies. “You never had a balance in terms of the distribution of resources for home and community-based services versus nursing home services,” Mann says.

The situation only worsened with COVID-19, as health care workers left for higher-paid positions or out of fear about the infection — leaving families to pick up the slack. “Unpaid caregivers are taking on more responsibilities as home health aides become unavailable,” Alexander says. “It strained an already strained system.”

Given the new demands, the health care industry needs to rethink how it delivers assistance services and create support structures that allow patients to more easily organize all of their care needs without going through silos.

“Out of necessity, we’ve seen the strengthening of  home and community-based services to help people remain in their home, where they are generally safer from the virus than in a congregate setting.”

Woman taking blood pressure for an elderly woman.

Eddie Pearson/Stocksy

Without proper training, family members who serve as caregivers are often ill-equipped to navigate the available support services. This can be especially complicated for those who care for patients who qualify for Medicare and Medicaid benefits.

Done right though, MLTSS can help those families. By packaging and integrating fee-for-service options with traditional health care to create individualized care management plans, MLTSS helps eliminate “one of the biggest stressors for older people and their families,” says Lynn Friss Feinberg, senior strategic policy adviser at AARP Public Policy Institute in Washington, D.C.

States With Managed Care Contracts for LTSS

States With Managed Care Contracts for LTSS

8 in 2004:
Arizona, Florida, Massachusetts, Michigan, Minnesota, New York, Texas, Wisconsin

16 in 2012:
above, plus California, Delaware, Hawaii, New Mexico, North Carolina, Pennsylvania, Tennessee, Washington (since ended)

25 in 2020:
above, plus Arkansas, Idaho, Illinois, Iowa, Kansa, New Jersey, Ohio, Rhode Island, South Carolina, Virginia

Sources: “Fact Sheet: Long-Term Services and Supports,” AARP, August 2019; “Who Pays for Long-Term Services and Supports?,” Congressional Research Service, August 2018; “Medicaid Home and Community-Based Services Enrollment and Spending,” Kaiser Family Foundation, April 2019; Medicaid and CHIP Payment and Access Commission, U.S. Census Bureau

Caretaker helping an elderly woman with food.

Addictive Creatives/Stocksy

Support for Caregivers

The search for solutions has already begun. When Mann’s firm worked with the state of New Jersey in 2020 to identify opportunities to improve care options for MTSS patients, the team sought to identify ways to improve coordination among the Department of Public Health and the Medicaid program, nursing homes and labor organizations representing staff. It also focused on improving wages and benefits for home health staff, increasing the Medicaid payment rate for nursing homes and making it easier to access personal protective equipment.

New Jersey is not alone. About half of all state Medicaid programs raised wages for direct care workers in 2019 and 2020, a notable increase from prior years, according to KFF. Congress also approved funding to extend through fiscal year 2023 existing Money Follows the Person (MFP) programs created to help nursing home residents move back home or to community-based care settings. From 2008 through the end of 2019, MFP made it possible for more than 100,000 people to transition to community living.

Almost 40 million family caregivers provide LTSS without pay, representing an economic value of about $470 billion.

Nearly all state MLTSS programs include support for family caregivers, including help with care coordination and care training. But only a minority of states support Medicaid’s home and community-based services waiver program that allows beneficiaries to direct payment to an adult family member for providing care. That means almost 40 million family caregivers provide LTSS without pay, representing an economic value of about $470 billion, according to AARP. And 60% of these caregivers also work full- or part-time jobs. On average, those who are unpaid, primarily women, give 24 hours of care a week, Alexander says. “Unpaid caregivers are the linchpin of care for many of these individuals.”

Caretaker helping a patient.

Gary Radler Photography/Stocksy

Planning for the Future

There’s little doubt MLTSS offers a viable care alternative to congregate care that can improve patients’ quality of life and ease the payers’ cost burden. But an active pursuit of reform is needed.

To further bolster the quality and accessibility of MLTSS services, Alexander encourages states to seek out more nontraditional providers, such as adult day care services. Such providers offer valuable support but only have limited experience with managed care, “so it’s going to take time to bring them along,” she says.

States also need to rethink how they measure MLTSS value for Medicaid beneficiaries and payers. Feinberg calls for standardized measures that more accurately track patient outcomes and prove services are leading to better care. “That’s the challenge moving forward in understanding how MLTSS is really helping older people and their families.”