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 US 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.
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