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A nursing home resident holds his wife’s hand.
© Human Rights Watch
US lawmakers should prioritize support for home and community-based services for older people as part of the negotiations on infrastructure bills under way in Congress, Human Rights Watch said today.
The vast majority of older people in the United States say they prefer to live in their current home or community, rather than in a nursing home. And international human rights standards require countries to take all possible measures to enable people with disabilities to live in the community, including by providing support services. But many older people in the US struggle to get home- or community-based care.
“Expanding home and community-based services in the US is long overdue, and the devastation in nursing homes during the Covid-19 pandemic highlighted the urgency of making these services more widely available,” said Laura Mills, researcher on older people’s rights at Human Rights Watch. “Congress has a rare opportunity to expand access to at-home services, so that older people have the choice to remain in their homes and communities.”
The bipartisan infrastructure bill recently negotiated in the Senate includes investment in transportation, energy and other traditional infrastructure. The original proposal from the administration of President Joseph Biden included $400 billion to expand access to home- and community-based services, including for older adults and people with disabilities. It also called for improving wages and working conditions for essential home health workers, many of them women of color, and protecting their ability to unionize.
Under the current negotiations, these services may be included in a separate bill. Lawmakers should ensure that these services are included, or risk perpetuating the existing shortfalls in support for older people to live at home, Human Rights Watch said.
The Covid-19 pandemic resulted in the deaths of more than 130,000 nursing home residents in the United States and raised serious concerns about neglect in nursing home settings.
Advocates have criticized shortfalls and lack of continuity in funding for home-based services, which include home health care, personal care such as assistance with bathing and eating, medical equipment, and home repairs and modifications.
Medicaid, the primary public health insurance program for people with low incomes, which is jointly administered by the federal government and the states, pays for the bulk of long-term support and services for older people and people with disabilities. However, while state governments are required to cover nursing home costs through Medicaid, they are not required to cover the full range of home-based services.
Spending on and delivery of such services varies widely across states. While 57 percent of the overall Medicaid budget for long-term care is spent on home- and community-based services versus 43 percent on nursing homes, many states spend more on nursing homes than on home-based services.
Florida, Indiana, Louisiana, Mississippi, and New Jersey each spend less than 40 percent of their long-term care budget on home- and community-based services, while Arizona, Massachusetts, Minnesota, New Mexico, Oregon, and Wisconsin spend over 70 percent. Medicaid spending on home and community-based services also includes some institutionalized care such as assisted living facilities — 12.4 percent of total expenditures in 2014, according to the most recent statistics.
Nursing home costs are generally higher than for home-based services. According to Kaiser Family Foundation, the average annual cost of care at a nursing facility was $91,250 in 2015, compared with $45,800 for a home health aide and $18,000 for adult day care services.
Currently, 188,000 people over age 65 are on waiting lists for home-based services. However, experts say, waiting lists may not capture the full scope of unmet needs. Many older people do not make it onto the lists because they or their relatives struggle to navigate the application process. Inability to access home-based services in a timely manner may compel some older people or people with disabilities to move into institutionalized care.
Natalie Kean, an attorney at Justice in Aging, told Human Rights Watch: “There aren’t many older adults on the waiting lists because it seems like they are just being funneled towards nursing homes. They are not even applying for home and community-based services and may be receiving wrong information. Or they can’t afford to wait for services to begin and going to a nursing home is the only way to get care right away.”
In a 2020 Human Rights Watch non-representative survey of 564 family members of nursing home residents, two out of three said they had considered moving their loved one out of a nursing home during the pandemic. Nine out of ten were unsuccessful in doing so, citing the costs of at-home care, work schedules that did not allow for full-time caregiving, or homes that were not accessible for a person with a disability. Many of these barriers could be surmountable with adequate support, Human Rights Watch said.
In interviews in 2021, experts, advocates, and family members of nursing home residents said that applying for at-home services was a confusing and bureaucratic process that often required months of research or gathering and preparing required documents.
Heather Joyce, whose 69-year-old father lived in a nursing home in Pennsylvania following a stroke, said that she had spent almost two years attempting to navigate the Medicaid application process for home-based services. Joyce wanted to care for her father at home, where he wanted to be, and where she believes the costs to the state would have been much less than the $11,000 per month that Medicaid spent on his nursing home care. But even with the help of lawyers from a non-profit legal aid organization, her father was still not approved for home-based services when he died in October 2020.
David Gates, a senior attorney at the non-profit Pennsylvania Health Law Project who helped Joyce, navigate the Medicaid application process said that in Pennsylvania it was often easier for people to qualify for Medicaid while in a nursing home than in the community.
“The problem is that people do qualify [for Medicaid], but information about this [community-based option] is not publicized or provided to people trying to get out of nursing homes,” Gates said. “It’s a very convoluted process and quite honestly to make it work, it’s [often] dependent on professionals like us… It’s not something you could do on your own.”
People in 44 states can move out of nursing homes with the help of the federal Money Follows the Person (MFP) program, which gives matching funds to states to provide services, including household set-up funds and security deposits for rent. Between 2008 and 2019, 101,540 people moved from nursing facilities to community living under MFP, which started in 2005.
However, the program is dependent on regular Congressional funding reapproval. States’ uncertainty around long-term funding contributed to a 50 percent drop in the number of people taking advantage of the program from 2018 to 2019, though in 2020 Congress extended the program for three more years.
The US Congress should ensure greater and consistent access to home and community-based services, for example by requiring states to fully cover home-based services, Human Rights Watch said. Congress should ensure adequate funding for any expansion of services, whether through the infrastructure bill or other initiatives.
Federal and state governments should expand the number and quality of services available to minimize institutionalization of older people and people with disabilities. They should also ensure that the Medicaid application and eligibility process is timely and accessible and that information is widely available to older people, including those currently in nursing homes, and their families.
International human rights law protects the right of people with disabilities, including older people with disabilities, to live in the community, and governments are obligated to take effective and appropriate measures to facilitate this, including by providing access to residential and community support services.
In 1999, in Olmstead v. L.C., the US Supreme Court decided that unjustified segregation of people with disabilities constitutes discrimination in violation of the Americans with Disabilities Act. It said that public entities must provide community-based services to people with disabilities when (1) such services are appropriate; (2) the person does not oppose community-based treatment; and (3) community-based services can be reasonably accommodated, taking into account the resources available.
US courts and the Department of Justice have also found that failure to provide community-based services to people with disabilities violates the ADA and the Olmstead ruling because it places people at risk of institutionalization.
The Covid-19 pandemic, during which many nursing homes in the United States were critically short-staffed and family visitors were largely banned from facilities, has underscored the urgency of protecting this right.
“Even as Covid-19 and apparent neglect in many US nursing homes posed a serious risk to the health and lives of older people in the last year, many residents of those homes were effectively trapped in facilities with no real option to move out and live independently,” Mills said.