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Elderly, At Risk, and Haphazardly Protected

A ProPublica and “Frontline” examination of the multibillion-dollar assisted living industry reveals a mishmash of minimal state regulation and no involvement by federal officials.

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A version of this story was co-published by "Frontline."

Workers found 82-year-old Vincenzina Pontoni submerged in a deep whirlpool bathtub. She had drowned.

Pontoni, a resident of an assisted living facility near Cleveland, wasn’t supposed to be left alone; her care chart stated that facility workers were to stand by while she was bathing “for safety.” But records show she had been unsupervised for at least an hour that day in 2010, with deadly consequences.

State law in Ohio does not require assisted living facilities to alert regulators at the Ohio Department of Health when a resident dies under questionable circumstances, so administrators at Pontoni’s facility never did. While law enforcement did an investigation – ruling the death an accident – the people actually charged with safeguarding seniors in assisted living never so much as visited the facility in response to Pontoni’s death. Indeed, the Department of Health was unaware of how Pontoni died until notified by a reporter investigating assisted living for ProPublica and “Frontline.”

When asked about Pontoni’s death, and whether the Department of Health feared other care issues had been overlooked, Tessie Pollock, a department spokeswoman, said it did not appear that any regulation had been violated by the Cleveland facility. She encouraged the families of residents in the state’s assisted living facilities to be vigilant on behalf of their loved ones.

Ohio’s hands-off approach to regulating assisted living is hardly an aberration.

Over the past two decades, assisted living has undergone a profound transformation. What began as a grassroots movement aimed at creating a humane and innovative alternative to nursing homes has become a multibillion-dollar industry that houses some 750,000 American seniors. Assisted living facilities, at least initially, were meant to provide housing, meals and help to elderly people who could no longer live on their own.

But studies show that increasing numbers of assisted living residents are seriously ill and that many suffer from dementia. The workers entrusted with their care must manage complex medication regimens, safeguard those for whom even walking to the bathroom can be dangerous, and handle people so incapacitated they can be a threat to themselves or others.

Yet an examination by ProPublica and “Frontline” found that, in many states, regulations for assisted living lag far behind this reality.

Despite the growing demands on care in assisted living, most states set the entry bar low for facility workers, requiring little in the way of education or qualifications. In Minnesota and 13 other states, administrators don’t need high school diplomas. Caregivers can be as young as 16 in Illinois. Facilities in some states, Colorado among them, are not required to have even one licensed nurse on staff.

Under most state regulatory schemes, assisted living companies are also free to decide how much staff their facilities should have. Just 14 states set staffing ratios; in Mississippi, facilities must have at least one staffer on duty for every 15 residents during daytime hours and one per 25 at night. In California, by contrast, facilities housing as many as 200 seniors need no more than two workers on the overnight shift. Neither of them is required to have any medical training. And one of them is allowed to be asleep.

Compared with nursing homes, assisted living facilities in many states receive relatively little outside monitoring. Under federal guidelines, nursing homes are supposed to be inspected at least once every 15 months. For assisted living, the interval between inspections can be five years in some states. South Carolina and five other states require no regular inspections.

In many parts of the country, assisted living operators face few consequences for even the most serious lapses in care. All states have the power to shut down troubled facilities, but they typically do so only as a last resort and after years of problems. Most states can impose fines for violations of safety standards, but they seldom carry much sting – in California, facilities routinely pay as little as $150 in cases in which the state found residents had died as a result of poor care.

While consumers can go online and compare the track records of nursing homes on a government web site, few such resources exist for assisted living. Twenty-two states still don’t post inspection records online, requiring residents to visit state offices to view them on paper or file public records requests.

ProPublica set out to compile the key rules and regulations governing assisted living in all 50 states and the District of Columbia. See what we found »

The Texas Department of Aging and Disability Services collects and posts a rich array of data on assisted living facilities. But after five years, the records are destroyed, making it tough for the public or regulators themselves to identify long-term patterns and problems.

The jumble of state laws governing assisted living reflects, in part, the industry’s efforts to fight off tougher regulation.

It has done serious combat in Washington to ward off federal oversight, insisting that states are best-suited to oversee the varied senior living environments that co-exist under the assisted living label. Simultaneously, the industry has conducted highly effective campaigns at the state level, from Iowa to Florida to Pennsylvania, to keep rules regarding training and inspection, staffing levels and fines, to a minimum.

"We absolutely support the idea of regulation," said Mark Parkinson, a former governor of Kansas who is now the president of the American Health Care Association and the National Center for Assisted Living, an industry trade group. "The issue then becomes at what level do you regulate it? Do you regulate at the federal level? Or you do at the state level? And our position has been that it’s better to do it at the state level.”

Parkinson and others say the ability of individual states to craft their own oversight policies makes sense given the great variety of assisted living settings – from rooms in private homes to 200-bed facilities run by national chains. And he says the absence of strict federal involvement allows consumers to have a greater voice in how assisted living is regulated in their local communities.

All of that, Parkinson said, helps explain why industry research shows a high level of satisfaction with assisted living care.

"Ninety-one percent of the country that has a mom or dad in assisted living facility would recommend that facility to someone else,” he said. “That’s a pretty important data point.”

To many -- advocates for the elderly, researchers, lawyers for victim families -- the hodgepodge of state rules present a real peril, one that is only likely to grow as the population in assisted living becomes more fragile. Some have called for federal regulation of assisted living similar to what exists for nursing homes.

“If you look at the history of assisted living, it sort of emerged like a hernia. It pushed through a soft spot in oversight,” said Richard Mollot, executive director of the Long Term Care Community Coalition, a national advocacy organization based in New York.

Federal rules would be no panacea, Mollot and others acknowledge – there are still plenty of problems with nursing home care. The federal government has exercised more authority over nursing homes because it pays many of the bills, chiefly through Medicare. Most residents in assisted living pay out of their own pockets.

Still, proponents say, federal regulation could at least make care standards more consistent nationwide and aid in the collection of basic information about assisted living that does not exist today.

Leaders in the assisted living industry deride the idea that federal oversight would improve residents’ circumstances and say that allowing standards to vary state to state allows for more flexibility and options in assisted living settings. They say they have adapted to the more serious needs of their residents, but continue to insist that assisted living has not become an actual health care enterprise, and does not need to be regulated like one.

“We think that the regulations are working well in each of the states,” said Richard Grimes, president of the Assisted Living Federation of America, a prominent trade group.

Chapter 1: In California, A Major System’s Considerable Failure

There are nearly 8,000 assisted living facilities in California today, roughly 25 percent more than there were a decade ago. But as the number of residents in these settings has swelled, the state’s system for ensuring their welfare has been slow to adapt. And by some measures, it’s been in retreat.

The Department of Social Services admits that it has failed to adopt new rules and requirements to better oversee the increasing percentage of assisted living residents who need substantial medical care. The state has also relaxed the requirements for facilities to show they can meet certain care and safety standards prior to admitting bedridden residents and those suffering from memory loss.

Since 2001, the department has cut its staff of inspectors by nearly 9 percent, and lengthened the timetable for how often facilities must be inspected from every year to every five years.

“There’s no question oversight is worse now than it was 10 years ago,” said Pat McGinnis, executive director of California Advocates for Nursing Home Reform, a nonprofit organization. “The current system is a recipe for neglect and abuse. Care standards are almost meaningless. Facilities can flout the law without facing serious consequences.”

An examination of California’s regulatory system – inspection filings, investigation reports, lawsuits and data from the state ombudsman’s office -- reveals the consequences of the cutbacks: Routine inspections are sometimes delayed and death investigations can take months to complete; even facilities with track records of repeated violations tend to receive slap-on-the-wrist punishments.

Irving Weinberg, 98, died in 2010 when his motorized wheelchair tumbled down a staircase at an Escondido, Calif., facility operated by Emeritus Senior Living, the country’s largest assisted living company and the dominant chain in California. It took regulators eight months to complete an investigation. When the state finally cited the facility for not having enough staff in place to prevent the fatal accident, the company was fined $150.

“We were not at fault for this extremely unfortunate and unforeseeable accident,” Emeritus stated in response to written questions. “There is no evidence that Emeritus at Escondido caused or contributed to this tragic incident in any way.”

A review of state inspection reports revealed that the state had cited the same facility just months before Weinberg’s death for failing to provide adequate medical attention for a resident who died of sepsis, a shock-like condition brought on by severe infection. In that case, too, the facility was fined $150.

Emeritus said the resident “was taken care of appropriately.”

“A hundred and fifty dollars for someone’s life?” asked Leslie Weinberg, Irving’s daughter-in-law. “I don’t think that is adequate.” The Weinberg family sued and settled with the facility’s owner.

In 2012, a worker at Gold Age Villa, a small assisted living facility in Placer County, picked wild mushrooms and put them in gravy she fed to five seniors. Unfortunately, the fungi were toxic. Four residents eventually died. The incident generated headlines around the country. The government response, however, was largely overlooked: The state barred the caregiver from working in the industry, but did not revoke the facility’s license or fine its owner.

The owner of Gold Age Villa did not respond to requests for comment.

In 2011 an inspector concluded that workers at an Attitudes Senior Care facility, in Del Mar, had “neglected” a bed-ridden resident, causing the person to suffer from “severe malnutrition” and “numerous” pressure ulcers, or bed sores, including a wound that eroded the flesh all the way down to the coccyx bone. State officials handed out a $150 fine and crafted a plan to bring Attitudes into compliance with California law. Records show the facility – part of a modest three-facility operation -- had been put on just such a plan a few years earlier, in 2008, when another resident “did not receive the required care.”

Karen Kelly, president of Attitudes Senior Care, said in a brief interview that she did not want to discuss the case, saying, when asked about the state’s sanctions, “The department is the department.”

“We have been providing excellent care for many years as any of our residents and family members can attest,” Kelly said in an email.

Pat Leary, chief deputy director of the Department of Social Services, said in an interview that fines alone were not a meaningful curb on facilities with dangerous gaps in care. But she said the department was armed with the power to shut facilities permanently, or to scrutinize them more closely by placing them on probationary status.

However, Leary couldn’t say how frequently the state was using these enforcement tools. Leary said even determining how many facilities, at any given time, had been deemed “out of compliance” with state regulations was “a hard statistic to get.”

Leary said improving oversight was imperative and that the department is working to make inspections more targeted, aiming to put inspectors inside problem facilities with greater regularity.

“How can we assure residents are safe and how do we know what’s going on? That’s the challenge,” Leary said. “We know we have a lot of catching up to do.”

But it’s not likely to be easy, for, as Leary admits, the department is trying to do more with less. Last year, the state broadened the workload for inspectors, tasking them with inspecting facilities for the physically and developmentally disabled in addition to assisted living facilities. When they are alerted to cases in which assisted living residents might be at risk of harm, they can take as long as 10 days to start an investigation.

Even then, their inquiries are often perfunctory, said Chris Murphy, whose group, Consumer Advocates for RCFE Reform, tracks deaths, neglect and mistreatment in Southern California assisted living facilities.

Murphy, who has a master’s degree in gerontology, said she started her organization after witnessing problems at a facility where her mother lived. She said she has only become more disturbed with California’s lack of oversight over time.

“Nobody’s accountable,” she said. “The citations are meaningless. It’s a charade, in my view.”

In 2007, workers at an Emeritus assisted living facility in Oceanside, Calif., found Irene Elliott, 98, lying in the dirt beneath her window, cold to the touch. It appeared she had jumped or fallen. The drop from her second floor window had fractured her pelvis, two vertebrae, left elbow and multiple ribs.

State investigators were called to look into the death. After a one-day probe, an inspector decided that the facility was in “substantial compliance” with the law. The facility, which insisted it had done nothing wrong, was not cited by the state.

According to court documents and the Medical Examiner’s report, however, Elliott, who suffered from dementia, had been exhibiting increasingly erratic behavior. Her family contends that the facility was aware of her issues, but didn’t take action to prevent the fatal incident from occurring. Despite her deteriorating mental condition, Elliott wasn’t moved into the building’s memory care wing, a secure space for people with Alzheimer’s and dementia.

In court papers, the company maintained it had responded promptly to the changes in Elliott’s condition and said there was “no basis” for transferring Elliott to the memory care wing.

Elliott’s family sued the company that owned the facility, reaching a settlement in 2008.

One of the central challenges for families searching for appropriate assisted living facilities in California is the dearth of information about their regulatory histories.

The state doesn’t post inspection reports or complaint investigations online.

In 2009, University of California-San Francisco professor Bob Newcomer received a roughly $600,000 grant to overhaul the Department of Social Services’ information technology systems. The goal was to improve how the agency collected data on assisted living, and to make that data more accessible to the public.

Newcomer and his team designed a new coding language that would make it easier for the department to pinpoint the most troubled facilities and track the most persistent types of violations across the state. The new system would also allow the department to post inspection results online, giving the public instant access to crucial information about facilities.

Today, some four years later, the department has yet to implement the system, making it difficult for the state to analyze even the most basic data.

“It’s a complete embarrassment,” said Newcomer, now a professor emeritus at UCSF.

Leary, who was appointed to her position in 2011, said she was unaware of Newcomer’s efforts and does not know why they stalled. She said she supports updating the department’s information systems.

“We have to have a system that’s actually in real time, and up to date, regarding a facility’s status,” she said. “Currently, we can’t do that.”

As assisted living facilities take in increasing numbers of sicker, frailer residents, Leary also acknowledged that her agency needs to do more to set and enforce staffing requirements.

State officials say they want to draw upon the wisdom of families, the industry and experts in senior care in determining what needs to be done. But to date, there’s little evidence that such a conversation has begun, and as a result officials have not proposed any significant legislative changes to enhance regulatory oversight.

Advocates for the elderly are frustrated by the lack of action, and furious about some of the pullback.

Murphy is proposing a radical revamping of California’s oversight apparatus. The first step: To place regulation of assisted living with the state Department of Public Health, which monitors hospitals and other medical facilities.

The California Advocates for Nursing Home Reform, in a soon to be published paper, are calling for wholesale reforms.

“The only thing that has ever worked with the department is lawsuits,” said McGinnis, who heads the advocacy group. “And that’s a hell of a way to make public policy.”

Chapter 2: “The Industry is Smart”

A decade ago, the assisted living industry was exploding in Iowa much as it was in California. But problems had been emerging, and to many it became clear the state’s Department of Elder Affairs was not up to the task of overseeing the care being delivered to thousands of seniors.

The Des Moines Register reported in 2002 that caregivers at some facilities had physically abused residents. At one, reports showed, an incontinent resident was left to wear the same adult diaper for five days. The paper also documented that the Elder Affairs agency had not imposed penalties on any assisted living facilities for violating standards of care, and that it had sanitized inspection reports to hide deficiencies before releasing them to the public.

Two successive governors, Tom Vilsack and Chet Culver, moved to get more serious about regulating the industry. In 2002, Vilsack shifted responsibility for overseeing assisted living to the Department of Inspections and Appeals, which already oversaw nursing homes and hospitals in the state. Culver, who took over as governor in 2007, appointed a lawyer who had once worked in the attorney general’s office to serve as the agency’s director.

The lawyer, Dean Lerner, was no stranger to taking on influential industries, having gone after petroleum companies for the cost of cleaning up underground gasoline leaks.

“I knew what I was getting into,” Lerner, in a recent interview, said of his dealings with the assisted living industry. “I knew that the industry was very powerful politically in the state.”

If forewarned, Lerner said he still was not fully prepared for what became four years of grueling confrontation.

During his tenure, Lerner said he tried to both enhance the regulations themselves and embolden enforcement of them.

He had some successes. He helped persuade legislators to close a loophole that delayed the posting of state inspection reports for months, even years, while facility operators appealed the findings. He took swift legal action against an assisted living company for false advertising and launched an investigation into consumer fraud in the industry.

But some of his efforts ran into stiff resistance. For instance, proposed legislation aimed at preventing elected officials, industry representatives and others from interfering with investigations of assisted living and other senior homes went nowhere.

The battles left Lerner exhausted and fatalistic.

“In every meeting I ever had with them, they would fight tooth and nail against any enhanced regulatory oversight or any public disclosure,” Lerner said of the industry and its lobbyists. “Their goal in every meeting? More money, less regulation, minimal public disclosure.”

Today, the central regulations governing assisted living in Iowa are much as they were when Lerner took over. The state is required to conduct inspections of assisted living facilities every two years and can assess civil penalties of up to $10,000 for neglect or abuse that results in fatal injuries. Iowa also requires assisted living facilities to be overseen by a registered nurse and that caregivers working with people with Alzheimer’s and dementia receive a minimum of eight hours of specialized training within 30 days of employment.

Even though the rules are more demanding than those of many other states, Lerner and other advocates say they remain inadequate to meet the growing challenges in assisted living.

In a statement, the Iowa Health Care Association, the trade group that represents assisted living companies, said Lerner was biased against the industry, exaggerating its problems and turning a deaf ear to its legitimate needs and concerns. The association said it has always welcomed responsible oversight, and has worked in good faith with legislators and others to define and enact practical and effective regulation.

But others, and not just Lerner, say the industry has worked hard to keep regulations superficial. Over the years, nursing homes and assisted living facilities have banded together, impressing upon lawmakers their status among the state’s largest employers. Too much regulation, they have made clear, could drive those jobs out of the state. Today, more than 50,000 people are employed in Iowa in what are known as long-term care facilities.

“The industry is smart,” said Brian Kaskie, associate director of the University of Iowa Center on Aging, who has closely followed long-term care issues in the state. “If you look at campaign contributions, they’re not huge. They keep a low profile. They don’t spread a lot of cash around. When they do, it’s very targeted. They spend as little possible in order to have the capacity to stop [tough regulation]. They frame it as, ‘We’re your city‘s largest employer.’ In Iowa, long-term care is a $2 billion industry.”

James C. Larew served as general counsel to Culver, and said he heard often from the industry about its unhappiness with tough regulation.

“I didn’t see a more powerful interest group in Iowa than the nursing home and assisted living industry,” Larew said. “They are very effective and there’s simply no countervailing weight on the other side.”

The Iowa Health Care Association rejects any suggestion that it has exerted undue influence on state legislators, saying the notion that votes regarding nursing home or assisted living regulation can be bought is “offensive.”

“We are proud to be among the many stakeholders who offer input on long-term care issues to policymakers,” the association’s statement said.

One former legislator thinks otherwise.

“Our state has sold out to the assisted living and nursing home industry,” said John Tapscott, a former state representative who now serves as a volunteer advocate for the elderly. “Everything introduced that is seen as positive for senior citizens is beaten back because the lobbyists are there with open pocket. And the people who suffer the most are those who have the least voice.”

Similar fights over regulation have played out in other states, with similar results.

In 2011, a Florida task force proposed higher standards for licensing and inspecting assisted living facilities, but the measures died in the state legislature.

New York spent four years crafting a battery of enhanced standards and enforcement tools. But in 2008, just as the measures were going into effect, the industry successfully sued to void some of the more rigorous regulations, such as requiring a nurse to be on staff if a facility was providing dementia care, and mandating that there be emergency call systems in resident bedrooms. A state judge ruled that the measures were unnecessary and too expensive.

“On the one hand, they’re telling consumers, ‘We’ll take care of you; You’ll be safe; We have trained staff and dementia care,’” Mollot, the executive director of New York’s Long Term Care Community Coalition, said of the industry. “With policymakers, they say, ‘We’re not a nursing home. We don’t need that kind of oversight or those kinds of requirements.’”

Industry executives in New York said they support exacting regulation, and that their successful court fight was only to eliminate what they regarded as needlessly onerous demands.

In Iowa in 2010, Lerner’s efforts to oversee assisted living became an issue in the race for governor. On the campaign trail, Republican candidate Terry Branstad criticized Lerner’s tactics and promised to replace him with someone who would work in a more “collaborative” and “cooperative” manner with the industry. After winning the election, Branstad named Rod Roberts, a former state legislator, to replace Lerner.

In a written statement, Roberts said politics and special interests had not influenced his ability to enforce assisted living regulations. Roberts said his department has an “open door policy with constituents, stakeholders, and all interested parties.”

Roberts also maintains that enforcement has been vigilant during his tenure.

“Incidents are down, investigation times remain constant, and department citations reflect a robust enforcement effort” Roberts wrote in a 2011 opinion article in the Des Moines Register. “What has changed, however, is the attitude and approach we take with our regulated facilities. Mutual respect has replaced ‘gotcha,’ and all those in our care facilities are better served as a result.”

Though out of office, Lerner was nonetheless drawn into the latest development in regulating assisted living, voicing strong opposition to an industry-supported piece of legislation this year that established a new process for appealing assisted living and nursing home violations. The new rules require outside attorneys – not the Department of Inspections and Appeals – to hear appeals.

Lerner testified against the legislation.

“This bill’s passage and the rulemaking represents further evidence of the industry’s clout to affect the regulatory process and frequently influence an agency charged with protecting the health, safety, and welfare of Iowans,” Lerner said at a public hearing.

But in the end, he lost. Again.

The legislation is not yet in force, but for Lerner it is another sign of the industry’s grip on the state.

“I absolutely, positively believe that the federal government has a role and needs to step up to the plate.”

Chapter 3: In Washington, a Lack of Will

National lawmakers have taken up the issue of assisted living several times. But those hoping Congress would go ahead and intervene have been disappointed.

In 2001, the Senate Special Committee on Aging was concerned enough to hold formal hearings, and Hillary Clinton appeared before her colleagues to articulate her worries about the inconsistent quality of care being offered around the country.

“Do consumers receive enough information to make wise choices?” Clinton, then a newly minted senator from New York, asked at the time. “I think we all understand that they don’t. What assurances do consumers have that the care will be adequate?”

The senators saw to it that a working group of industry representatives, advocates, experts and regulators was formed and charged with making recommendations for how conditions in assisted living facilities could be made safer.

A year and a half later, the group produced more than 100 recommendations. Virtually nothing got done. Congress, for example, did not allocate money to sufficiently fund ombudsman programs in the states, offices that act as advocates for those in assisted living and other long term care facilities.

“It was preposterous,” recalled Toby Edelman, an attorney with the Center for Medicare Advocacy who participated in the work group. “There wasn’t even any agreement on what assisted living was. We couldn’t agree on whether it was intermediate step for people before they went to nursing homes or whether it was an alternative to a nursing home.”

A decade later, after the Miami Herald exposed widespread abuse in Florida facilities, the issue was back in front of Congress. Concern was again expressed. And with it, some frustration about what hadn’t happened.

Florida Sen. Bill Nelson noted at a 2011 hearing of the Senate Special Committee on Aging that it wasn’t just his home state that had problems. In Pennsylvania, emergency room workers removed 50 maggots from a resident’s open facial wound, he said. In New York, a senior died after caretakers mistakenly gave her someone else’s medication. In Virginia, police responded to a 911 call and found one resident lying on the floor calling for help while another was struggling with a catheter.

“So, we’re going to have to ask ourselves in this hearing if we’ve been talking about the same problems for over 10 years, why are we still talking about it?” Nelson said. “What are the solutions?”

The committee itself ultimately offered no solutions.

To date, the federal government has stayed out of regulating assisted living. This is as the industry wants it.

“I know there are some very sincere people that would like to see federal regulation of assisted living,” said Richard Grimes, president of the Assisted Living Federation of America, the industry group. “They would like to have a very simple definition of assisted living that everyone could live with that, that every community would look the same. And there would be one set of regulations to govern them. But that’s just antithetical to what the philosophy of what assisted living is all about.”

Assisted living, the industry maintains, should be about flexibility: the ability to tailor, state by state, community by community, the kinds of residential settings offered and the levels of care promised. Assisted living facilities can run the gamut from private homes converted to care for a handful of residents to more institutional facilities as large or larger than traditional nursing homes.

“It is about choice, and I just believe that choice is one of the biggest components to quality of life there is,” said Granger Cobb, the chief executive officer of Emeritus.

If the federal government assumed responsibility, Cobb said, “they would have to approach it like they did skilled nursing and put everyone into the same box and say these are now the regulations. One size fits all. Everybody has got to do it this way.”

Some advocates for the elderly say such claims are misleading. Federal rules for nursing homes take into account that not all homes are identical, they say.

“This is a false choice,” said Eric M. Carlson of the National Senior Citizens Law Center. “Establishing basic consumer rights, and establishing some common-sense requirements for ‘assisted living,’ does not mean that operators are put into a one-size-fits-all box.”

Still, over the years industry leaders have pressed this argument, turning out in force to make it in person in Washington.

Last month, for instance, more than 140 industry executives flew to Washington to meet with some 300 members of Congress and their staffs.

Their message:

“We’re doing a great job,” said Grimes, whose group spearheaded the effort. “Assisted living is working. And we’re very pleased about the future.”

Some regulators with experience at the state level agree that federal intervention could be a mixed blessing. State workers, their ranks already thinned by budget cuts, could wind up overwhelmed if asked to monitor assisted living facilities like nursing homes, even if the mandate comes with some financial aid from Washington.

“I’m not disparaging of nursing home regulation,” said Rick E. Harris, a former regulatory official in Alabama who served on the national work group a decade ago. “It’s not been a bad thing. It’s been reasonably successful in improving quality of care in nursing homes. But state regulatory agencies have to have some flexibility because you only have so many resources.”

Whatever the impact of the industry’s lobbying in Washington, the lack of involvement by the federal government in overseeing assisted living is in many ways, not surprisingly, about money.

“A lot of this has to do with how this industry evolved,” said Don Redfoot, a senior strategic policy advisor with AARP. “The high percentage of nursing homes receiving federal subsidies meant that federal government had a bigger obligation to step in and regulate. Assisted living evolved not out of a federal program, but rather largely as a private pay industry.”

Barbara Edwards, director of Disabled & Elderly Health Programs for the Centers for Medicare & Medicaid Services (CMS), told lawmakers at the 2011 hearing in Washington that her agency has not taken a stance on the issue of whether the federal government should take a more active role in regulating assisted living. She noted that CMS does require states to report on their systems of oversight and asks states to survey whether residents are getting appropriate care.

Those who favor a greater role for federal regulators see several ways they could help: by requiring minimum standards for staffing, resident rights, administration, and medication management; by stepping up enforcement for false advertising and consumer fraud; by enhancing state inspection and enforcement programs; and even by funding research on quality standards and their impact on outcomes in assisted living.

Some think federal involvement of some kind is just a matter of time. While most people in assisted living pay for their own care, the amount of federal money going into the industry has been ticking upwards. Today Medicaid helps to pay the bills for nearly 20 percent of assisted living residents nationwide, according to a 2010 survey by the U.S. Department of Health and Human Services.

"We are at a point where we need federal regulation of assisted living," said Lori Smetanka, director of the National Long-Term Care Ombudsman Resource Center. "First, because of the increasing frailty of people in assisted living. Second, because of the increasing federal money going into assisted living. As more federal dollars go for assisted living services, it's only reasonable to expect federal standards to go along with that.”

ProPublica's Hanna Trudo contributed to this story.

Carla Muss-Jacobs

Oct. 29, 2013, 3:49 p.m.

I worked for Granger Cobb years ago.  He hired me to work at some board and care facilities where he began his career.  I was only in that industry a short time, but I do know Granger has dedicated his life work to this industry. Granger has a good moral compass. I knew him as a young man.  HA—that’s because I was young too.  I’m sure he has grown in his capacity and takes these matters seriously. 

We need to have the ‘end of life’ respected just as we embrace the ‘start of life’  We have no idea (and this is my philosophy talking) what is on the other side. And those that are in the job of caring for the elderly should understand how important this role is.  To assist with the crossing . . .

The care is as good as those providing it.

When a company cuts corners, bilks the Federal government, under-staffs to save a few bucks . . . laws will improve that, only if people abide by them. But, there ARE laws already in place . . . and yet, these abuses continue.

Not only are there laws already in place which are broken left and right, but the ethics, the basic humanity of people, morals, etc. are flawed.  People get into the wrong business ALL the time. They are unscrupulous, and their moral compass is so far OFF north it’s disgusting—some people shouldn’t be in charge of kenneling a dog, let alone providing end of life services for the elderly in nursing homes and assisted living centers.

Mother Teresa cared for sick, dying, elderly, orphaned children and the cast-off people that no one wanted to help.  She didn’t have much to work with, but she had compassion.  Her entire ministry on earth was based on that . . . love, compassion, caring.  Money doesn’t create this.  Only people do.  You won’t stop the abuse through government and more rules.  You won’t stop the abuse, greed and oversight by anything over then a well-educated, trained, caring staff, and a corporate culture of dedication to this industry. 

There was a story I read recently about a care center whose owners fled (it was in California) They probably got wind of a bust, and high-tailed it.  They abandoned the residents.  You know who didn’t flee—the staff!  The employees stayed with the residents.  And that says it all! 

Those companies that are terrible . . . the industry knows who they are.  Shut ‘em down.  Close them.  There ARE good companies out there.

when a medical doctor retires to an assisted living or nursing home at $10,000 a month, that doctor’s family expects that he not sit in his own urine for more than 10 minutes.  the lack of regulation of the industry on the federal level leaves gaps to fester at the state level.  no money—Medicare or private—should support for-profit corporations whose first objective is to take care away from the elderly in exchange for profits on the bottom line.  this should be a criminal offense.  so states need to be held accountable on the federal level and pony up to the abuse and enact state criminality statutes so that every senior citizen is not subject to neglect.  again, my solution is to return healthcare to the nonprofit status and make for profit healthcare illegal.  healthcare is a right, even when you’re 85 or 90.

I need to know that if I can get a written agreement from an assisted living facility on how a person will be taken care of, that it will have some real power in court.  I should be able to have some kind of control on how someone is being treated and some recourse if they are not.  If my loved one dies at the hands of a facility that didn’t honor their role, I want to be able to shut them down and make them put everyone into a proper home.  I would not be asking the governments help but instead a lawyers.  So from everything I have read here, one must have a proper agreement signed so that they can be sued for what they did not do as part of a written agreement rather than what the law says about what they are allowed to do or not do.  I gather that I would have to have a form for them to sign as they are not likely to offer one.  Is this the way it must be done…or is there a law that protects anyone from bad care?

I am a Senior Citizen severely disabled.. I need another layer of bureaucracy, another collection a bureaucratic nincompoops only at the federal level to protect my interests like I need a stick in my eye..

Stop stealing my retirement thru deliberate inflationary policies.. Stop trying to decide when it is time for folks like us to “be allowed” to “die with dignity”...

Stop Republican and Democratic Officials from reaching into my pocket to pay for a bunch of lazy shiftless young people for whom “education is a right” and hard thankless work is beneath their dignity.. The costs of their well being to be paid for by everyone else…

Or? .... in a few years you will be the Phony Caretakers next victims and they will do the same to you.

Maybe it is best said this way… Your all fooling no one ... with the exception perhaps of yourselves…

Goody Two shoes Policies are never as advertised… they only enrich a few so called “Do Gooders” at the expense of those who they are ostensibly trying to help..

Ultimately lowering our standard of living and making all of us poorer to include yourselves.

Don’t listen though… you know it all better right?  Where have I heard that before? (Smile).

Add New Jersey to the list of do nothing States, the NJDOH will not act on a clear violation of patients rights by assisted living. The industry is in control of state governments, contacting the big republican governor of NJ and my state representatives does not work, the assisted living lobby is to strong, it does not help that our republican governor has already set his sites on the 2016 presidential election.
Having a facility sign an agreement will not work, I had an agreement in place and it was ignored, you are at a great disadvantage since the industry will just consider you an emotional care giver and then tell you we will do as we please.
You should not need a lawyer on retainer to care for a loved one, regulations as weak as they are need to be enforced, New Jersey has regulations in place but will do nothing about the facility, registered nurses, or doctor who violated patient rights, hiring a lawyer will only enrich the legal profession, it will not solve the problem.

This is precisely why we need public federal healthcare standards.

States often have weak standards that are too easily manipulated by private interests.

The ACA isn’t perfect, but it’s far better than what we’ve had up to now.  It’s a good start and we need to build on it.

Think your trauma is all about seeing your loved one develop dementia…read what our family encountered at   ROSEWOOD MEMORY CARE 35 fenton Livermore ca 94550

Paying close to $7000 for my dementia mother to be in this facility was not the major problem. Let me go over some of what this watermark facility boasts (W) and the facts(F) of what we encountered:

W-no tiers, no hidden costs.F-$2000 increase to move to memory care unit from assisted living quarters

W-encouraging staff  
F-Executive Director, Nancy, angrily and pridefully boasts of her experience with her dementia mom not having dementia symptoms rendering her unable to relate to residents needs

W- showers given 2x weekly.
F-once a month average

W-highly trained staff with dementia residents
.F-staff unable to shower, monitor residents

W-ample staffing
F-employees complaining they are unable to address patient safety issues due to short staffing, sick call employees not replaced

W-nutritious meals expertly prepared by skilled chef  
F-corn dogs, canned vegetables, canned soups,cold sandwiches at mealtime

W-resident injuries not documented to state.. only rosewoods personal records  
F-residents family not privy to accidents, injuries nor written reports

W-ombudsman to represent families with deputes  
F-they are volunteers and they recommend moving resident if any problems-no follow through with reports to state agencies

W-family meetings to address needs of resident discussed
F-resident evicted from facility due to…textbook dementia symptoms that, verbatim, “they cannot deal with nor address, perhaps another facility would be more appropriate”

Anyone going through this devastating disease with their loved one, is traumatized already.. we turn to these type of facilities for help, security and safety for our family members.. we look for specialized facilities,  highly efficient staffing and the knowledge that what they advertise is true and factual.
Highly trained staff members:
1.know how to get patients in the shower
2.know they are incapable of putting their own laundry away,
3.know they need an incredible amount of help, know that it is important to have sunlight daily,
4.know that they need ample walking areas (not a short, dark hallway)
know that highly salted foods are not recommended to hypertensive senior citizens,
5.know that fresh vegetables and fruit are what is expected from “skilled chefs that prepare nutritious meals”..

At $7000 a month, I am confident that fresh food is appropriate….corn dogs, seriously?

@Since this posting, we found out through our tenacity and perseverance I believe that they were finally charged with elder abuse but unless someone else comes forward with the same facts and alerts the authorities, it will eventually be ‘brushed under the carpet”.

Our loved ones deserve care and respect just as our babies need protection due to their vulnerability and helplessness. Watch your facilities..don’t accept lip service..

To RFS,
    I agree wholeheartedly with you NJDOH does nothing and NJ governor Chris Christie is partly responsible in the fact that he does not a take a leadership role in advocating for seniors and people with disabilities in Assisted Living. The care of seniors and people with disabilities should not be political or about money. I am a registered independent, and through my experience from getting help from him and other NJ agencies I am disappointed in him, I am disappointed in my state!  What happened to people in a position of power doing what is right? What happened to this country, do we hold nothing sacred anymore? 
    Also, I find it strange that there is no direct number or address to NJ DOHHS Commissioner Mary O’Dowd.  If there is corruption within the state agency how are we suppose to contact her without third party interference? Where is the citizen accessibility? That is why we went to the governors office personally to complain about an Assisted Living facility since Christie’s chief of staff is married to the commissioner, maybe it would get to her.( never heard back from his office though).

To RFS,
    This article resonates with us who had to deal with he horrific issues with an NJ Assisted Living facility in south jersey. This facility has had problems for more that a decade. Like a resident with Dementia found dead outside in mid winter, 40ft from the front door in the early morning hours! This facility just changed it’s name but with the same two administrators that I would not even trust with my dogs.
    The DOHHS knows of this facility and it’s reputation , some of their staff in the division of Licensing and Oversight for Assisted Living and Assisted Living programs are still there. In fact, one staff member outright lied to me about regulations and gave stellar recommendations of this facility and it’s administrators until I stopped her and told her that I knew about it’s horrific past and that the administrators and the company has not changed, I knew the truth!
    Silly me,  I thought NJ department of Health and human services was to be objective and independent, it was as if I was calling the private company that owned the facility!

I’ve learned that when I see or hear

states are best-suited to oversee

there is a 95% probability that the speaker/writer who advocates that approach as a “solution” is looking to make some extremely small group of nominal Americans a whole lot of money…even at the expense of the health and lives of many, many <i>other<i> Americans.

(Emphasis on “other” intentional.)

Linda Edgewood,KY

Nov. 8, 2013, 6:03 p.m.

To L. Brown,

I am so sorry for what you are going through. You are right. The trauma is in watching your loved one go through this horrible disease.

To anyone that reads this and is willing to help me start a grassroots effort to stop these corporations and their BILLION dollar business, here is my email; .(JavaScript must be enabled to view this email address)

I am POA for my friend who is 82 years old. What I have seen and gone through, trying to get “professional” help for him, is simply disgraceful. I have literally cried myself to sleep many nights out of frustration and helplessness.

I have called several news channels in my area and they won’t touch this story. Same with the newspaper. Once the name of the facility is mentioned,( Atria Summit Hills), they are no longer interested.

I am exhausted, but I will never give up.

I saw the Frontline expose and began to doubt my assisted living coverage. My wife (63) and I (68) had been paying 200 dollars a month for assisted living coverage for tgen yhearfs from Genworth. we received a letter from Genworth informing us that our premiums would nearly double effective October 4th 2013. We couldn’t possible afford the increase and with the Frontline expose we had no choice but to cancel the policy.

One of the other negative implications of inequitable free trade, deregulation, and the recent mortgage-backed securities pyramid scam is…relocation.  Specifically, the relocation of younger generations to areas where they can find jobs and/or afford housing…areas away from their aging parents, who often have paid off their homes and don’t want to or can’t afford to relocate themselves.

Not only does that deprive aging parents of assistance that may keep them out of assisted living longer/forever, it removes a watchdog over assisted living facilities and corporations.

It is a sad truth that such entities - more realistically (and because I get tired of allowing greedy and/or sadistic individuals to hide behind the incorporated “person”) the individuals who run them - will often be more negligent…more sadistic…if they believe that they have no reason to fear being “caught” by the children of the aged.

America’s politicians…those politicians who sold themselves to the owners, operators and shareholders of Corporate America…have betrayed all generations of the American people.

This article is part of an ongoing investigation:
Life and Death in Assisted Living

Life and Death in Assisted Living

Is the loosely regulated, multi-billion dollar assisted living industry putting seniors at risk?

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