Public opinion surveys consistently show older adults want to age in place. But, it turns out, nobody can agree on what that actually means. And those disagreements can have important consequences for policymakers as well as those trying to develop alternative settings for people to age.

Aging in place is a big idea with social and political significance but no real legal meaning. But its cousin, home and community-based care, or HCBS, has become a term of art and even law, especially when it comes to Medicaid long-term services and supports.

Aging In Place

Many people think aging in place means remaining in the home where you lived during your working life. It often is a house you owned for years and, perhaps, has become a large share of your wealth.

But circumstances may make that house the worst choice for aging. Stairs, dangers lurking in bathrooms or kitchens, lack of transportation, and social isolation make that suburban Cul de sac home, farm, or walk-up apartment poor places to age.

Besides, in our increasingly mobile world, what does attachment to home even mean?

HCBS

The stakes are even higher when it comes to defining HCBS. As policymakers battle over the future of Medicaid and other programs, the definition of home and community care will be increasingly important.

For example, what home-based services and supports should Medicaid pay for? How should Medicaid HCBS pay for people to live in group settings such as assisted living?

As a result, experts in aging and disability have been trying to more clearly define both aging in place and HCBS. It is important work. But so far, it has led to unsatisfactory results.

In a recent article in the journal Health Affairs, a group of disability experts took a crack at laying out the contours of HCBS. Their definition is too long to quote in its entirety, which is part of the problem. Here is some of what it says:

“Home- and community-based services (HCBS) are a range of supports provided to people in their homes and local communities.

HCBS assist people of all ages who need help to live or remain at home and engage in community life. HCBS may be short-term, long-term, or intermittent. They help people to exercise their right to have choice and control over their lives, including where and with whom they live, and their day-to-day activities, including work, school, or other meaningful ways they engage in their community.”

Then, it lists some of those services, including personal care, home modifications, transportation, care navigation, family caregiver support, and the like. And it concludes with this:

“HCBS can be provided in places such as a person’s home, workplace, school, and other community locations. HCBS help people to live, work, and spend time in places they choose that are part of the broader community.”

Too Broad, Too Narrow

They are right to focus on services rather than specific places. It is the quality of care that should matter, not where you get it. The problem is that, in an attempt to satisfy so many constituencies, their definition is both too broad and too narrow.

Oe one hand, its list of services could be provided almost anywhere, from a single-family suburban house to assisted living to small group homes and even nursing homes. On the other, it seems to explicitly exclude many settings that serve older adults or younger people with disabilities.

Why is a clear definition so important?

Recently, some policymakers and analysts have proposed increasing Medicaid benefits for HCBS or creating a new Medicare benefit for home and community-based services. For example, a recent Brookings Institution plan would create an HCBS program under Medicare. So would a bill introduced by Rep. Debbie Dingell (D-MI) and Sen. Andy Kim (D-NJ). But what home-based services would they cover?

Without a clear and explicit definition of HCBS, any reforms risk becoming impossible to administer and unacceptably expensive.

What Is Place?

Senior tech blogger Paul Wilczynski nicely described the ambiguity around aging in place in this LinkedIn piece.

He summarizes the literature this way: “In plain terms, the distinction breaks down like this: home-based aging in place relies on external support systems; assisted living offers a single-tier version of aging in place; CCRCs [continuing care retirement communities] offer a multi-tier, campus-wide version; standalone independent living and nursing homes generally fall outside the aging-in-place framework as commonly defined in research.”

That seems like an accurate summary of the literature. But is it right?

For example, many advocates argue that definitions of home and community-based care or aging in place should explicitly exclude nursing homes. Indeed, they’ll tell you that the whole point of Medicaid HCBS is to help people avoid nursing facility care for as long as possible.

Yet, I have visited nursing facilities that almost anyone would identify as a home. The Green House model, where residents have private rooms, community spaces, significant personal autonomy, and a caring staff can feel very much like a home.

While some nursing homes are awful, care in others is vastly better than residents would receive in their prior homes. And it includes those services that would fit the definition of an HCBS setting in the Health Affairs article.

And what about assisted living, memory care, or continuing care communities?

It is confusing. Medicaid will pay for care in assisted living but not room and board, as it does for nursing homes. Perhaps 20% of assisted living residents receive Medicaid.

Yet, while many assisted living facilities may satisfy the reams of regs that qualify them for HCBS status, they are not home-like in any way. Tiny rooms. Little personal autonomy. Depressingly few activities. Insufficient care. Not a home I’d live in.

On the other hand, even as advocates for home-based care insist people should have the right to decide where they live, many with substantial resources and unlimited options choose facility-based care, such as assisted living, memory care, or CCRCs. They do it because they can provide social connections and supports that may not be available at home. Full disclosure: I am an unpaid board member of a non-profit CCRC.

Home-based care is by far the most common setting for the personal care of frail older adults and younger people with disabilities. But if we are going to build policies to support it, we’re going to have to reach a common understanding about what it means. And that’s going to take more work.