Here’s a word association game: I say, “long-term care” and you will probably respond, “nursing home.” But the truth is that there are nearly twice as many assisted living (ALF) and other residential care facilities (more than 30,000 in 2014) in the US than nursing homes (about 15,000). And there are more than 800,000 people living in residential care facilities, almost equal to the roughly 1 million living in nursing homes.

Many of these ALF residents have high care needs. About 40 percent have dementia—many living in separate “memory care” units of larger facilities. Half are age 85 or older and more than half need help dressing or bathing. It is more than a cliché to say that assisted living is the new nursing home.

State regulation

Yet unlike skilled nursing facilities, which are heavily regulated by the federal government, assisted living and other residential care facilities are regulated only by the states, and the variation among jurisdictions is enormous. Even though about 330,000 ALF residents received about $10 billion in Medicaid benefits  in 2014 (and the numbers are surely far higher today), neither many states nor the federal government know much about the quality of care those Medicaid residents are receiving, according to a new study by the Government Accountability Office.

The study found huge gaps in oversight and reporting. According to GAO, Medicaid officials in 30 states do not routinely review the licensing and certification of facilities, and 18 don’t look at the results of  site visits.

GAO reviewed a list of critical incidents, ranging from abuse, evictions and discharges, and unexplained deaths. Last year, it asked the 48 states that provided Medicaid benefits for ALF residents for data on these events that occurred in 2014. Twenty-six did not have the information to respond to GAO. And 14 had no process to make this information available to consumers.

Payment differences

The agency also found an enormous variation in average payment to facilities by state, ranging from $1,700 to $108,000 per year (the states also differed in the kinds of benefits they’d fund).

GAO’s study raises many important questions about how states gather data about safety in facilities. But it only scratches the surface of the issues that matter to residents and their families.

For example, The Hospital and Healthcare Compensation Service reported that in 2016 turnover among personal care aides in ALFs was more than 37 percent and 35 percent among all employees.  Twenty-eight percent reported that turnover had increased from the year before.

12 minutes of nursing care

The Centers for Disease Control reports that about 60 percent of facilities provide skilled nursing care and less than half provide social work services. On average, a resident receives about 12 minutes of nursing care and about 2 hours of personal care a day.

Facilities may have very different rules about when they can evict a resident. Some will try to keep someone as long as possible. Others will discharge them once their staff can no longer provide a safe level of care. Some are required by state law to discharge someone who is not mobile enough to escape a fire or other emergency. What does all that mean? And how to you find a balance between keeping someone safe and allowing them to remain in a home where they feel comfortable?

While the federal government operates a website to allow consumers to compare nursing homes and home health agencies using a range of safety metrics, it operates no such service for residential care. And state information is often less-than-transparent or up-to-date.

What is assisted living?

In fact, there is no agreement even on what assisted living is. Some researchers, including the CDC, use a catch-all phrase “residential care community” to mean anyplace that provides a minimum level of services that is not a federally-licensed skilled nursing facility. It can mean everything from a 100-bed campus operated by a national chain to a 10-bed small group home or even 2 people living in the personal residence of a retired nurse.

Regulating these facilities is an enormous challenge. States must balance the need for consumer safety with flexibility and cost. One reason consumers increasingly choose ALFs over nursing facilities is that they are less institutional and provide a bit more freedom (which can be another word for higher risk). Another is that they can be less expensive, and some of that cost savings results from lower regulatory costs.

More due diligence

Less regulation can also make it possible for operators to be more creative in the mix of services they offer and in their living arrangements. But it may also put residents in financial and personal danger. And, as the GAO implies, can put taxpayer dollars at risk for care that may be poor, or worse.

Residential care can be a good housing choice for a loved with significant care needs. But the absence of oversight and regulations requires families to do extra due diligence before choosing a facility.