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D.C.’s nursing homes are among the least regulated in the nation.

Both of Yvonne Ewell Smith’s parents had Alzheimer’s disease when she made the difficult decision in 1988 that they needed a level of care she could no longer provide. Smith found them a place at the Rock Creek Manor nursing home in Dupont Circle.

Four years later, in the fall of 1992, Smith began noticing problems with the quality of care given to her mother, Ailene Ewell. Ewell’s hair wasn’t being combed regularly. At times, she was left in her nightgown all day. Little things started disappearing from her room.

One weekend, Smith visited her mother and found her in tears throughout the visit. The explanation came the following Monday, when she learned that her mother had had a thermometer left in her rectum all weekend. In February 1993, Smith discovered that her mother’s arm had been broken. In March, she arrived at the home and found her mother with a black eye.

Smith moved her mother out of Rock Creek Manor and later sued the nursing home, charging it with abusing her mother and failing to provide her with proper care. In 1999, Smith was awarded one of the largest jury awards ever for a nursing-home case in the District: $1.3 million in compensatory damages for the assaults on Ewell, who had passed away in 1997 at the age of 100.

Money wasn’t everything, however. Before the lawsuit, Smith enlisted her mother in a bigger fight: to improve the level of care for all District nursing-home residents. Ewell was among a group of residents who had filed a successful class-action suit against the District in 1993 to bring the city’s nursing-home regulations into compliance with the federal Nursing Home Reform Act of 1987. That suit alleged that the District unlawfully maintained a two-tier system for regulating nursing facilities eligible for reimbursement under Medicare and Medicaid.

The system, the plaintiffs asserted, maintained a distinction between “intermediate” and “skilled” care facilities—a differentiation that led to “damaging transfers between and discharges from different facilities; harmful separations from loved ones; and burdensome denials of the right to live where they choose.”

Because patients had to change facilities as their conditions worsened, they often had to leave healthier spouses behind and move to different homes for care. Others were rendered homeless when their “intermediate” facility refused to readmit them after a hospitalization, because of their newfound need for “skilled care.” Both these things had happened to Ewell. After leaving Rock Creek, she lived four more years at her new nursing home, but she never saw her husband again.

Judge Charles R. Richey of U.S. District Court ruled in March 1994 that tier distinctions and the District’s nursing home regulations violated federal law. He gave the city 30 days to bring its regulations into compliance, after which those regulations not in compliance would be “null and void.”

The D.C. Department of Health never brought the regulations into compliance, and the local rules—the city’s equivalent of the state regulations in place elsewhere—faded into oblivion.

Seven years later, no new local regulations have been adopted by the District to replace the ones scrapped in April 1994. City inspectors with the Department of Health now enforce only federal rules when investigating complaints and problems at the city’s 19 private and two public nursing homes.

And an ongoing battle between patient advocates and the nursing-home industry over the content of new rules, first proposed by the Department of Health in 1999, has stalled their final publication and adoption.

“We don’t understand quite why this [new rule] is needed, because the federal rules were the product of a quite comprehensive Institute of Medicine report” and a congressional overhaul of nursing-home standards, says David Beck, executive director of the D.C. Health Care Association, a nursing-home trade group. “We’re not sure that having a separate set of local rules conveys a significant advantage.”

But the longer the debate continues, the more the conflict between industry and patient groups comes to resemble a grudge match, with neither side willing to give up demands just to get something published. “It’s just kind of been a battle between the industry and the advocates, with the nursing homes fighting for no regulations and the advocates fighting for strong regulations and the Department of Health trying to satisfy both sides—or, rather, satisfy neither side—and come up with something both sides could agree on,” says Zita Dresner, an attorney with the D.C. Long Term Care Ombudsman Program, which advocates for residents of nursing homes.

“The more players there may be in the community, the longer the process takes,” says Nan Reiner, assistant general counsel for the Department of Health. “The regulations-promulgation process in the District has an awful lot of checks and balances.”

D.C. is not the only jurisdiction in the country that does not levy local fines against nursing homes. Some states prefer other methods of bringing homes into compliance. But the District remains one of just a handful of places that have no state rules at all. In fact, the broader movement at the state level has been for stronger regulations, say nursing-home experts, especially now that some Bush administration health-care regulators have expressed support for relaxing federal standards. Texas, California, and Florida have all strengthened their rules in recent years, and health-care advocacy groups often cite those states as national models of progressive regulation.

“Many states have regulations that go beyond the federal regulations,” says Janet Wells, policy director of the National Citizens Coalition for Nursing Home Reform. “Some individual states have taken some really strong positions in recent years.”

Patient advocates argue that the District’s negligence in adopting new rules in the wake of the 1994 lawsuit has led to a host of new problems. District nursing homes operate without much threat of economic sanction for providing poor care. The federal regulations—known as OBRA regulations, for the 1987 Omnibus Budget Reconciliation Act that included them—carry few financial penalties. The federal rules also are subject to a lengthy appeals process. Nursing homes sanctioned under OBRA can drag disputes over fines into the courts and keep them tied up there for years before paying any penalty.

Indeed, a June 2001 University of California study found that state civil and monetary penalties are more effective than federal regulations in bringing deficient nursing homes around because local rules are “easier and faster to use.” Other problems with the federal system, the report concluded, include concerns that fines get settled at “too low a [dollar] level” and “the process takes too long.”

In D.C., the absence of localized rules has also undermined the enforcement system. City-funded ombudsmen make up the first line of defense for complaints, and they will often try to resolve a complaint “at the facility level,” explains Dresner. If that’s not possible, “we’ll refer the complaint to the Department of Health investigators to investigate,” she says. “We’ve gone for seven years without local regulations, and the excuse for nonenforcement is that we don’t have any local regulations.

“The investigators’ position is that unless they actually see the incident or the situation, they can’t do anything,” Dresner continues. “They can’t say that [the complaint] is substantiated. If an ombudsman actually sees something happen—sees an aide hit a resident—if an ombudsman reports that to licensing, to the Health Department, they are going to go out and say they can’t substantiate it, because they didn’t see that aide hit that person.”

Mikel Elmore knows what it’s like to live in a nursing home that’s been found to be “deficient” under federal rules. In August, Medlink Nursing Center on Capitol Hill in Northeast, his home for the past four years, reached an agreement with the Department of Health to correct a number of “serious deficiencies,” according to Reiner.

But patients say adequate staffing remains a concern. On a Sunday in September, two nurses watch over 38 patients on the fourth floor—where Elmore lives—along with two certified nurse assistants.

“We got a lot of people who’d like to get up and get around, go to church services,” says Elmore, who is paralyzed from the chest down and needs assistance getting from bed to his wheelchair. “When we don’t have enough people, they have to stay in bed all day.”

Elmore lives in what looks like a regular hospital room on a floor that looks like a regular hospital floor. It does not look homey, even with his personal touches, such as a boombox, a drawing of Jesus, and pictures of his family. Elmore suffers from pressure sores on the backs of his calves and heels, and his ankles are wrapped in tight white gauze. He has been doing better since he got a special therapeutic bed, Elmore says, but in the past, he suffered from sores so severe that they required the amputation of part of his heel bone and skin grafts.

“All of that, I think, it was unnecessary for me to have,” Elmore says. He gets around in a motorized chair now, donated by the family of a deceased resident. But the chair is too small for Elmore, and he’s been battling the home unsuccessfully for a larger one since February.

The smell of urine lingers persistently in the halls of Elmore’s ward. Not everywhere, but in enough places that you notice it. Still, Elmore thinks Medlink is an exceptional institution, because it has private rooms. At least he’s not housed in a big dormitory-style room, he says, or with two or three other men.

In truth, the lifestyle—and smell—offered by Medlink isn’t that unusual. An October 2000 University of California study analyzing nursing-home defects in the United States ranked the District among the bottom 10 states in 1997, 1998, and 1999 in terms of cleanliness. Between 35 percent and 78 percent of nursing homes in D.C. were cited under federal rules during each of those three years for deficiencies in food sanitation and housekeeping. Not surprisingly, homes in D.C. were also often found lacking in the quality of care provided to patients.

If the same report is to be believed, however, none of these substantial problems have adversely affected patients’ quality of life. The District was the only state or municipality in the nation with no reports of “dignity” violations—such as leaving patients exposed in public areas of a home—in 1998 and 1999. That’s a big change from the early ’90s: In 1993, 66 percent of all homes in D.C. had at least one report of such a violation. In fact, nursing homes in D.C. have experienced such a sharp decline in reports of violations that industry observers think the figures may point to a defect in the city’s reporting process rather than a dramatic improvement in nursing-home conditions.

For example, no home in D.C. was cited for deficiencies in activities offered to patients between 1996 and 1999. Nor were any cited for problems with services that help patients with daily life between 1995 and 1999. D.C. homes received citations for improperly aiding incontinent patients with bladder problems in only one year between 1993 and 1999. And that year was not 1994, when federal inspectors found that “some incontinent patients wore diapers with holes and others had fingernails so long and jagged that they cut their hands” at the city-run D.C. Village nursing home, according to a Washington Post report.

And despite the widespread problems with food safety noted in the University of California study, not a single nursing home in the District was cited for any problems with patient nutrition between 1995 and 1999.

Nursing-home regulations are intended to be highly specific. Everything from lighting, temperature, and closet space to the use of nasogastric tubes and frequency of patient bedsores is supposed to be monitored and to meet certain standards.

The standards are high because nursing-home residents are vulnerable, fragile—and expensive. It costs the city $57,000 per year to house an elderly or infirm person in a nursing home. But in the District, there is no strong monitoring system to implement what little regulation there is. The 21 nursing homes are monitored by the same Health Department division that monitors group homes for the mentally retarded and, until Oct. 1, oversaw community residences for the mentally ill.

A Pulitzer Prize-winning 1999 investigation by the Washington Post uncovered massive failures by the city inspectors in overseeing group homes for the mentally retarded, including 48 unexplained deaths. Despite the tumult caused by that investigation, the inspection system remains deeply troubled. A July 2001 report by the D.C. auditor found widespread deficiencies in the homes for the mentally ill and concluded that the problem was inadequate oversight by the Department of Health inspectors. Annual inspections “were not regularly conducted,” facility monitoring was “inconsistent,” and the system for reporting and investigating complaints “lacked overall coherence and dignity,” the report concluded.

“There have always been the same untrained people doing the same inspections,” says Kelly Bagby, an attorney with patient-advocacy group University Legal Services, of the Department of Health’s licensing oversight department. “Every single section of that part of the Department of Health is greatly understaffed.”

Attempts to fill the regulatory vacuum have been painfully slow. Last April, the Department of Health published draft nursing-home regulations in the D.C. Register. It was the fourth time the department had done so.

“They’ve been working and commenting on local regulations for two years now. Every time [the regulations] come out, all the advocates get together and complain because they don’t have the protections they should have. They make a big stink about it and we say, ‘OK, we’ll do another comment period,’” says Dresner. “Now they’re supposed to come out in the fall.”

For a while, it looked as though the rules were supposed to be published in final form on Oct. 9. But, according to Ward 8 Councilmember Sandy Allen, who chairs the D.C. Council’s Committee on Human Services, more comments have been made and another draft will need to be made public. Perhaps the final rules will be published in November, she says.

“We’re looking at the regulations that were published in the D.C. Register [last April] to make some amendments to the regulations,” says Allen. “In the fall, we will amend them to set a definite amount of hours that professionals be present with patients. There has been no set standard about the amount of time nurses must be present with patients.”

Allen concedes that the District’s process has “taken longer than it should have.” But, she adds, it’s important to get the rules just right. “We want tougher sanctions than there have been in the past,” she says. “We have found out that if you don’t sanction, people just ignore you.” CP