Where we age shapes how we age. What neighborhood we live in can predict everything from life expectancy to likelihood of having a limb amputated to whether we spend our last years in a nursing home.
The swath of devastation COVID-19 is cutting through communities is the latest evidence. Even in the same city, older adults in neighborhoods with high concentrations of Black and Latino people are at greater risk of dying from COVID-19 than those in majority-white neighborhoods. Those in nursing homes are more likely to contract and die from COVID-19 than their community-dwelling peers. This is not only because of their underlying medical conditions. It’s also because, as research suggests, institutionalization is itself a risk factor for COVID-19.
Location matters because it determines access to health-enhancing resources and exposure to health hazards. Racially discriminatory zoning and housing market practices have led to communities of color having higher concentrations of health hazards and reduced access to health-enhancing resources, such as greenspaces, accessible health care providers and healthy food. A shortage of providers and hospital closures has left many in rural communities without access to nearby doctors. Individuals living in areas prone to natural disasters face life-long consequences of severe weather events — because of the trauma they inflict on individuals (especially those of lower socio-economic status) and the toll they take on community infrastructure and resources.
Place-based threats and deprivations compound across the lifespan for older adults. Where an individual is born has a lifelong impact on wellbeing. And both the county a person is born in and the county they live in at age 50 predict life expectancy. Because older adults in communities of color disproportionately face location-based disadvantage, this also contributes to a growing racial disparities in life expectancies.
A recognition of the link between location and wellbeing is leading to growing dialogue around the need to prioritize housing and development policies that promote equitable communities through all stages of life. Consistent with the vision, advocates for low-income families and for older adults urge states and communities to address health disparities by supporting affordable housing, funding public transportation and community services, maintaining accessible green spaces and creating incentives to ensure diverse populations have ready access to health care providers and healthy food.
Missing from this growing discussion of equitable communities is an appreciation of the interplay between housing policy and long-term care policy — that is, policies that govern the services and supports available to individuals who need help with basic activities of daily living (such as walking, bathing and eating). The Medicaid program is the primary source of U.S. long-term care policy because it is the primary payer for long-term care services,
Medicaid’s decisions about where long-term care services will be provided and under what conditions, shape the housing options of older adults. It exacerbates geographic disparities by allowing states to provide in-home care in only certain communities and by creating strong incentives for institutionalization.
Medicaid steers older adults into institutions. It does this by requiring states to use Medicaid funds to cover nursing home care for all eligible beneficiaries — but allowing states to choose whether to pay for most home-based care. It also steers older adults into institutions by allowing states that do cover home-care services to cap the number of beneficiaries served. The result: in some states, older adults wait anywhere from several months to 14 years before they get the home-based care they need. And even when individuals are approved to receive services, nearly three-quarters of states limit how many hours they can get, how much the services can cost and where individuals can live. This institutional bias persists despite significant evidence showing that home-base care saves the Medicaid program money.
So even when people could live a safer and healthier life with in-home help, they may be forced into a nursing home to get needed care. And the problem may soon get worse: amid COVID-19-related budget shortfalls, limitations on coverage may become more commonplace. Already, California has proposed reducing the budget for in-home care for older adults and people with disabilities.
Medicaid doesn’t just affect whether people live in institutions or in the community; it also affects which communities they can live in. This is because Medicaid is actually a piecemeal set of programs — not a single program — that vary from state to state and even from county to county. In fact, states have nearly 300 separate programs offering Medicaid-funded long-term care services. These programs differ both in the services they offer and to whom they offer them. All offer some home health services, and most offer personal care services. Some offer much more comprehensive support — including specialized medical equipment, home modifications and rides to the doctor or pharmacy.
This patchwork creates tremendous confusion and unnecessary administrative work. Just keeping track of available options is difficult, and convoluted paperwork hinders older adults and their families who are trying to get care for themselves or loved ones. And the hodgepodge approach is a particular problem for older adults who move. Relocating to a new community or a new state — whether by choice or because a hurricane destroyed a prior home — can even force someone onto a waitlist for services or into a nursing home.
Consider the situation faced by low-income older adults evacuated from rural Butte County in California, when wildfires ripped through the area this fall, killing 15 people — most of them older adults — and damaging or destroying 2,455 structures. When living there, those who would otherwise need nursing home care could live at home with support thanks to the County’s Multi-Purpose Senior Services Program. But the three neighboring counties don’t provide that level of care at home. So Butte County evacuees who moved to neighboring communities faced the prospect of either going without care or ending up in a nursing home.
Older adults should be able to live healthy and satisfying lives regardless of where they live. Creating the type of equitable communities that will make this possible requires an array of policy responses at the federal and state level. Ending Medicaid’s patchwork approach to home-based care — although typically overlooked in conversations about geographic disparities — must be part of the response. Ensuring that individuals are not forced into institutional care merely because of where they happen to live is an essential part of building equitable communities.
Nina A. Kohn is the David M. Levy professor of law at Syracuse University and the Solomon Center Distinguished Scholar in Elder Law with the Solomon Center for Health Law & Policy at Yale Law School. Her research focuses on the civil rights of older adults. Follow her on Twitter @NinaKohn.
Jennifer Goldberg is deputy director at Justice in Aging, a national nonprofit that fights senior poverty through law. She works to build more equitable systems to meet the needs of low-income older adults. Follow her on Twitter @goldberg_ja.