In partnership with ProPublica

Who’s Looking Out for Seniors?

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Assisted living facilities care for nearly three quarters of a million seniors nationwide, a number that’s expected to rise as the Baby Boomers keep aging.

But over the past several years, their growth has evolved relatively unchecked, with no federal regulation and a patchwork of supervision that varies from state to state.

And the industry is fighting to keep it that way.

“Assisted living is the rock we don’t want to look under,” said Catherine Hawes, a professor at Texas A&M University’s Health Science Center who conducted a national study of the system.

At best, consumer advocates say, families can find it difficult to determine a safe, quality home for their loved one. At worst, seniors can be left to suffer in poor conditions or even die.

“Why do we not think this is a ticking time bomb?” Hawes asked.

How It Got This Way

Assisted living started in the 1980s as a reaction to nursing homes, which had become more oriented toward hospitalization, and as a way of offering seniors more choices and more independence in the way they live.

But over the years, assisted living has evolved to house seniors who need specialized care, such as those with memory impairments. One geriatric psychiatrist, Constantine Lyketsos, a researcher at Johns Hopkins University, told FRONTLINE that in a study of residents in assisted living in Maryland, two-thirds had dementia — suggesting that memory loss is one of the leading reasons people seek out assisted living.

That means that people have more needs, require more attention — and, some senior advocates argue, more or better regulations to ensure that the residents are safe and getting the quality of care they need.

There are no federal regulations, leaving it to states to set their own standards, even to the point of having different definitions of what an assisted-living facility can be. Many states have taken a relatively hands-off approach, either because they didn’t anticipate the shift in residents, or didn’t have the time or resources to deal with it.

“The largest problem was that assisted living was melding into nursing home care,” Dean Lerner, the former head regulator of assisted living in Iowa, told FRONTLINE. “Who’s taking care of these people, and what are the laws that require them to be kept safe?”

How the States Regulate

Each state has its own regulations and definitions of assisted-living facilities. Most enforce them through random surveys of facilities, during which regulators can log violations that can lead to fines or the threat of losing their license.

But not all states gather what consumer advocates say are key data points, such as how many times residents fall, whether any mistakes were made in giving out medication, or other markers that are readily available for nursing homes.

And what little information exists can be difficult for consumers to access. Some states post information online or even issue “report cards” on facilities, but others don’t.

Industry advocates say that data isn’t the best way to evaluate an assisted-living facility because it doesn’t capture the full experience of residents.

“While regulation is important, it is not necessarily a panacea,” Mark Parkinson, president and CEO of the American Health Care Association, an industry trade group, told FRONTLINE. “Regulation that is done smartly, that promotes person-centered care, that promotes quality outcomes is great. But regulation that creates regimens, institutional-type settings and really takes away from some of the benefits of assisted living would be a negative thing.”

The industry works through state affiliates to fight to keep restrictions in check. “It’s easier for lobbyists in the industry to fight regulation on a state-by-state basis” because state legislators often don’t have the knowledge or expertise the industry can bring to the debate, said John Bowblis, an economist at Miami University’s Farmer School of Business.

In Iowa, Lerner, the former head regulator for health facilities in the state, told FRONTLINE that he received his share of criticism from politicians and health-care industry representatives. “I think it’s pretty fair to say that there’s a push and pull, and sometimes coming to blows, over the regulation not only of assisted living programs but the seriousness with which nursing homes are inspected — all the health care facilities the department is responsible for,” he said.

In 2008, Lerner tried to strengthen penalties for elder abuse, supporting a law that would clarify the definition of abuse and put those convicted of the offense on a registry that would bar them from working at a facility for a period of time.

The health-care industry fought the law. A lobbyist for the assisted-living industry accused Lerner of “criminalizing” those who work in their facilities. The law that was finally passed set higher standards for showing abuse, requiring the state to show gross misconduct rather than negligence.

“All in all it was a good thing to have gotten it passed, even in a semi-watered down fashion,” he said.

Many states have struggled to hold facilities accountable because they don’t have the finances or the staffing to handle it.

In California, for example, regulators are so stretched that they only visit facilities every five years.

When they do find a violation, often the citations are so weak they don’t seem to make much of an impact. In California, for example, FRONTLINE and ProPublica found five deaths in recent years in Emeritus facilities for which the company was found negligent by the state. The typical fine? $150.

“The residents in these facilities are citizens of the state, and they’re physically and often cognitively vulnerable,” Hawes, the consumer advocate, said. “It’s the state’s responsibility to ensure that things are safe and the quality is adequate. The argument ought to be why isn’t the state adequately funding this process? Why isn’t the legislature providing the funds that are needed?”

“Meaningful and Appropriate Oversight”

A recent cover of the major assisted living industry trade group’s magazine sums up its point of view: It features the headline “Regulatory Advances” below a pair of scissors slicing through a piece of red tape.

The Assisted Living Federation of America, an industry group known as ALFA, says that it supports “meaningful and appropriate oversight” of senior living in each state. It maintains a list on its website of standards and policies it supports, including background checks on employees and trained staff members.

But ALFA is adamant that federal oversight isn’t necessary and lobbies in Washington, D.C. to make sure that doesn’t happen. The group maintains a national branch with a political-action committee and sponsors annual fly-ins for members to meet with members of Congress to advocate for bills.

“We’ve become a very powerful organization in just a few years, because our board of directors, our staff have realized the importance of advocacy towards achieving the kinds of things we want done,” said Richard Grimes, ALFA’s president and chief executive, in a promotional video posted online.

The industry argues that federal regulation would prevent assisted living facilities from remaining flexible and as varied, forcing them to become more institutionalized.

On the state level, ALFA has several priorities, some of which it outlined in the latest issue of its industry magazine, Senior Living Executive. One is to endorse accreditation from independent groups, such as CARF International, instead of relying on state regulators and their shrinking budgets.

CARF offers accreditation for a fee. Instead of unannounced visits, facilities book their visits at least three months in advance, and work with CARF consultants on the lead-up to the surveyors’ arrival.

Consumer advocates say the accreditation can be a helpful supplement to state regulation, but they worry that as a replacement, it could further erode the survey process, the only way assisted living facilities are evaluated independently.

“These are industry-supported regulations,” said Pat McGinnis, the executive director of California Advocates for Nursing Home Reform, a consumer advocacy group. “It’s certainly not going to be independent.”

Arizona, where CARF International’s U.S. headquarters is located, already uses the accreditation program. Texas recently passed a law allowing accreditation and is working on a pilot program. New York is considering it as well.

The industry also supports informal dispute resolution, which allows facilities to settle citations from the state before they’re presented to the public. In Texas, for example, an industry-supported law was recently passed to allow facilities to exhaust all appeals on a citation before anything is posted online.

Another major industry priority is legislation that would allow seniors to sell their life-insurance policies to a third party to pay for assisted-living care. Texas and Kentucky have already passed such laws. Maine, Florida and Louisiana are considering it, according to the industry magazine article.

The industry is also pushing to allow nurses to do more in senior housing, and as the health-care industry prepares for the Affordable Care Act, to ensure more federal funding comes towards assisted living, not just nursing homes.

The Centers for Medicare and Medicaid Services, known as CMS, has been working to establish a definition of assisted-living facilities, in what would be the first federal attempt to get involved in assisted-living standards.

It isn’t expected to impose regulations like staffing quotas or training requirements, but rather to establish guidelines to distinguish these facilities from nursing homes, such as the ability of residents to make private phone calls or receive visitors at any hour. There’s no set time frame for these guidelines to be released.

What It Means for Consumers

ALFA and other industry advocates argue that the free market, more than state regulators, actually keeps the industry in check. If residents or their families don’t like a particular facility, they can take their money elsewhere.

“The answer is [to] be an advocate for your mom or dad, go in to the facility, talk to the people that are actually going to take care of them, and then talk to other folks who have their moms or dads or grandparents and find out what it’s really like,” Parkinson said. “That’s the way that you find out what facilities are all about.”

But consumer advocates worry that the limited accountability and access to information makes it harder for families to decide which facilities are going to take proper care of their loved ones.

“We’re going to see more deaths, more injuries,” Hawes said. “We’ve created a situation where it’s almost impossible for this not to occur. And families are going to be so shocked, because they think they’ve made a good decision. They think they’ve made a safe decision.  And they don’t understand.”

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