We talk about the care system for older Americans as a continuum. Home care at one end, nursing home at the other, assisted living somewhere in the middle. The image is of a smooth gradient, as your needs intensify, you move along the line toward more support, more supervision, more care. It is a tidy picture. It is also wrong.
The continuum of care is not a continuum of care intensity. It is a continuum of autonomy, mutuality, and dignity—and the differences between its levels are not merely matters of degree. They are categorical. The nursing home is not simply an assisted living facility with more staff. It is a fundamentally different relationship to space, to other people, and to the meaning of home.
Understanding this distinction matters enormously for policy. We have spent decades trying to keep people out of nursing homes. We have spent far less time asking why the arrangements people want—living with family, living in communities of their own choosing—are so poorly supported that nursing home placement becomes, for many, the only option left.
Three Levels, Three Different Relationships
The first level is the family home and its extensions: multigenerational households, in-law apartments, shared living among friends and chosen family. What defines this level is not the absence of need—people at this level may need substantial support—but the presence of mutuality. The arrangement exists because people want it to exist. The older person is not placed; they are chosen. The younger person or partner or neighbor is not a provider; they are a co-inhabitant. This mutuality is not incidental. It is constitutive of what makes the arrangement work.
Families who want to keep someone home cannot afford the support they would need to do it safely. Assisted living facilities that could serve as genuine nursing home alternatives remain financially inaccessible to anyone without substantial assets.
The second level is congregate housing: assisted living, Section 202 senior housing, supportive senior housing, naturally occurring retirement communities. Here, people have their own space, their door, their kitchen or kitchenette, their address—but share services and common areas. The arrangement is intentional but not relational in the same deep way. They chose this building; they do not choose their neighbors. The staff care about you, but they care about everyone. Mutuality is present but attenuated.
The third level is institutional care: the nursing home. Here, the relationship to space changes entirely. They do not have a home. They have a space with a bed and a few pieces of furniture. In most nursing home rooms in the United States, that bed is shared with a stranger—or rather, the room, divided by a curtain that substitutes for a wall. (Medicare and Medicaid historically reimburse only for semi-private accommodations, a financing structure that has entrenched shared rooms as the default.) They have no door to close, no kitchen. They do not decide when to eat, when the lights go off, when someone enters their space. The arrangement exists not because they chose it but because the alternatives ran out.
This is not a criticism of nursing home staff, who work extraordinarily hard under extraordinarily difficult conditions. It is a description of what nursing homes structurally are: total institutions in Goffman’s sense—where the basic architecture of private life—the door, the threshold, the ability to admit or exclude—has been removed. In Erving Goffman’s 1961 taxonomy, nursing homes appear explicitly in his first category of total institutions: settings established to care for people felt to be both harmless and incapable.
The Category Error in Policy
Because we understand this as a care continuum rather than a dignity continuum, we have built a policy system that funds the institutional end lavishly and the community end inadequately. Medicaid will pay approximately $119,000 per year to place an older person in a shared nursing home room. In many states, it will not pay to support the same person living with their daughter, or in an assisted living facility down the street, or in a Section 202 building with a home health aide coming in each morning—because home and community-based services are an optional Medicaid benefit, while nursing home care is a federal entitlement.
The result is predictable. Families who want to keep someone home cannot afford the support they would need to do it safely. Assisted living facilities that could serve as genuine nursing home alternatives remain financially inaccessible to anyone without substantial assets. And nursing homes—despite decades of reform efforts, despite litigation, despite federal staffing mandates—remain the default destination for the people the system has failed to support anywhere else. Research consistently finds that a 1% increase in HCBS spending is associated with an average decrease of 47 nursing home residents per state and $7.3 million in institutional Medicaid savings—meaning investment in community alternatives more than pays for itself.
A June 2026 GAO report found that 44 states cover at least some assisted living services through Medicaid—but no state may pay for room and board in assisted living, a federal restriction that effectively prices most low-income older adults out of the congregate alternative to nursing home care. Massachusetts, one of the most progressive states on aging policy, offers limited personal care coverage through its Group Adult Foster Care program and a Frail Elder Waiver capped at roughly 20,000 slots—but no robust Medicaid-funded assisted living option. The political economy of nursing home financing—powerful industry lobbies, complex federal waiver requirements, state budget pressures—makes reform slow. But the more fundamental obstacle is conceptual. We keep trying to improve the nursing home when we should be asking why so many people end up there in the first place.
What a Dignity Continuum Would Look Like
A policy system organized around the dignity continuum rather than the care continuum would look different at every level. At the family home level, it would support multigenerational living through accessory dwelling unit reform, caregiver support stipends, and Medicaid policy that follows the person rather than the facility. It would recognize that an older person living with their family is not a burden being managed but a participant in an arrangement that works.
We keep trying to improve the nursing home when we should be asking why so many people end up there in the first place.
At the congregate level, it would close the Medicaid gap, ensuring that people who want to live in an assisted living or supportive senior housing setting can do so without spending down to poverty first. It would invest in the nonprofit and community-development housing that already exists—Section 202 buildings, LIHTC senior housing—and give them the funding streams to provide the services their residents need.
At the institutional level, it would recognize that the nursing home as currently structured is not a home and stop pretending otherwise. Eliminating multi-bedrooms—a reform recommended by the National Academies of Sciences, Engineering, and Medicine in its 2022 report, required by several states, and consistently blocked by cost arguments—would be the minimum. Research supports the case: single-occupancy rooms are associated with reduced infection transmission, improved sleep, fewer medication errors, and higher resident and family satisfaction. The question of whether congregate institutional care can ever be genuinely dignified, or whether it is structurally a last resort, deserves honest public debate.
That mutuality—unremarkable, ordinary, taken for granted in millions of households—is what the long-term care system has never figured out how to support, or how to replicate, or how to value. The question worth asking is not why so many families end up at the nursing home door. It is why we built a system that leaves them nowhere else to go. Something that simple should not be this hard to build a policy around.
James Lomastro, PhD, has more than 40 years’ experience as a senior administrator in healthcare, human services, behavioral health, and home- and community-based services. He was a surveyor at the Commission on Accreditation of Rehabilitation Facilities surveying throughout the United States and Canada. Lomastro is a member of the Coordinating Committee of Dignity Alliance Massachusetts.
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