Assisted Living and the Problem of Self-Regulation

Assisted living facilities currently provide care for close to three quarters of a million seniors nationwide. a number that will surely rise as Baby Boomers continue to age.

Despite the growth over the past number of years, no federal regulation has been put in place, while supervision remains spotty, varying from state to state. And all indications suggest that the industry likes things just the way they are.

(Related: Seven Questions To Ask When Searching for Assisted Living)

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.

Consumer advocates say that at best, families are having trouble finding a safe, quality home for their loved one. At worst, loved ones are neglected in poor conditions that could even result in death.

As a reaction to nursing homes, assisted living started in 1980s a reaction to nursing homes, which were more geared toward hospitalizations, and as a means to provide seniors with additional choice and independence.

Over time, assisted living has evolved to house seniors who require specialized care, like dementia or Alzheimer’s patients. Constantine Lyketsos, a geriatric psychiatrist and researcher at Johns Hopkins University, told FRONTLINE that is a study of residents in assisted living in Maryland, two-thirds had dementia.

As a result, more people have greater needs, and more specialized attention — and, some senior advocates contend, more advanced regulations to guarantee the safety and quality of care of residents.

(Related: Obamacare and Long-Term Care Insurance)

Without federal regulations, states are able to determine their own standards to the point of creating their own definition of what constitutes an assisted-living facility. A number of states employ the hands-off approach as a result of lacking time and resources, or because they didn’t foresee the shift in residents.

“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?”

Most states enforce their own regulations through random surveys of facilities. Regulators log violations during these surveys that can result in fines or potentially losing their license.

Common when self-regulating, a number of states are failing to collect what consumer advocates say are key data point, like how many times residents fall, if mistakes were made in giving out medication, or other points that are easily acquired for nursing homes.

Even in the instances where information exists that consumers are looking for, accessing said information is a horse of another color. Certain states will make the information online or even issue “report cards” on facilities, but not all states offer such a courtesy.

Industry advocates feel that evaluating an assisted-living facility with data fails to capture the complete 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.”

State affiliates operate on behalf of the industry to keep restrictions in check. “It’s easier for lobbyists in the industry to fight regulation on a state-by-state basis” because typically, state legislators lack the knowledge or expertise that the industry utilizes in the debate, said John Bowblis, an economist at Miami University’s Farmer School of Business.

In 2008, Lerner, the former head regulator for health facilities in the state, tried to increase the penalties for elder abuse and have those convicted of the offense placed on a registry barring them from working at a facility for a period of time.

(Related: Nursing Home Use By Medicaid Senior Plummeting)

The health-care industry vehemently fought the law, accusing Lerner of “criminalizing” those who work in their facilities. The law that eventually passed set higher standards for showing abuse, requiring the state to show gross misconduct opposed to negligence.

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

Most states lack the resources to hold facilities accountable. Take California as an example, where they only visit facilities every five years. In the instances when they do find a violation, citations are so weak that they make little impact. In California, FRONTLINE found five deaths in recent years in Emeritus facilities for which the company was found negligent by the state. The standard fine? $150.

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?”

The Assisted Living Federation of American, known as ALFA, says it supports “meaningful and appropriate oversight” of senior living in each state. A list of standards and policies that it supports is listed on the website, including background checks on employees and trained staff members.

With that said, ALFA is adamant that federal oversight isn’t necessary and lobbies in Washington D.C. to ensure that doesn’t happen. They maintain national branch with a political-action committee and sponsor annual fly-ins for members to meet with members of Congress to advocate for bills.

(Related: Long-Term-Care Insurance Dilemma)

“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.

A major industry priority is legislation to 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.

The Centers for Medicare and Medicaid Services, known as CMS, intends to establish a definition of assisted-living facilities, in what would result in the first federal effort to get involved in assisted-living standards.

While it isn’t expected to impose regulations like staffing quotas or training requirements, it would establish guidelines to distinguish these facilities from nursing homes, like the ability of residents to make private phones calls or receive visitors at any hour. A time frame for these guidelines has yet to be set.

Along with other industry advocates ALFA argues that the free market, more than state regulators, will keep the industry regulated. If residents or their families don’t like a facility, they can take their money elsewhere.

(Related: Health Insurance Scams On The Rise)

“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.”

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