Violette King is buzzing around her home office in Godfrey searching through photos and cluttered files detailing nursing home abuse when a ringing telephone interrupts.  On the line is an elderly man. He wants a recommendation on a nursing home for his ailing wife, who is being discharged from a hospital.  "Can't you keep her at home?" King asks in an incredulous tone, hand on hip. "We don't recommend any nursing homes. There aren't any good ones around here."  Her response is harsh. But King, one of the nation's leading voices for nursing home reform, is adamant in her belief.  Across the country, thousands of advocates

Violette King of the Godfrey, Ill.-based Nursing Home Monitors joined marchers in front of the courthouse in Clayton, criticizing St. Louis County prosecuting attorney Robert P. MuCulloch's handling of the heat-related deaths of four women in a University City nursing home last April.

Whether it's sneaking into industry meetings to gather intelligence, donning disguises to make midnight inspections in problem homes or traveling long distances to badger lawmakers to reform nursing home laws, this ragtag army of agitators keeps the pressure on nursing home owners, employees and public officials. 

Loosely knit by phone, fax, e-mail and Web sites, they form a nationwide information network that identifies poor homes, crusades for legislative change and in many cases provides the last hope for families who feel abused by the system. 

"It is somewhat of a crazy quilt of organizations and individuals, but it is an incredibly dedicated and stalwart group," said Deborah Mitchell of the National Citizens' Coalition for Nursing Home Reform, an umbrella organization representing a broad coalition of advocate groups and individuals. "There's absolutely no question that they are invaluable. A lot of times residents' lives are in their hands." 

Fueled by anger 

Over the years, the efforts of advocates, most of whom are women, have led to lawsuits against homes, sparked changes in several states and driven some of the nation's worst operators out of business. 

Many are drawn to the cause by what they perceived to be the preventable loss of a loved one in a nursing home. Fueled by their anger, the views of some can be extreme. 

Words such as crooks, corruption and incompetence pepper their conversations about those who run and regulate an industry in which every year thousands die preventable deaths. 

"It's an American disgrace - the American holocaust," said Ila Swan, a crusading Californian. 

Swan spent three years and put 56,000 miles on her Toyota Cressida visiting all of the state's counties to buy more than 3,000 death certificates and autopsy reports. Her investigation uncovered large numbers of preventable deaths and eventually led to changes in California law, a General Accounting Office investigation and hearings before the U.S. Senate Committee on Aging in 1998. 

"Guess what? They're still killing people," said Swan, 62, a retired telephone company worker. "Nobody is making them stop. We're not talking about an airplane part or DDT in the environment that over the years will kill somebody. We're talking about killing going on right now, and nobody will do anything about it." 

Advocates employ a variety of tactics, including pickets, protests and use of the media to keep the issue in the public eye and to hold regulators accountable. 

On a steamy, late-July morning, about two dozen people, including children, marched in front of the St. Louis County Justice Center in Clayton to protest the lack of prosecutions in the overheating deaths last year of four women in a University City nursing home. Many carried signs that read "Who owns County Prosecutor McCulloch?" and "Nursing home deaths go unpunished." 

Off to one side, King adroitly handled a half-dozen radio and television interviews, schmoozed with a state legislator and exchanged hugs or pecks on the cheek with late arriving protesters. 

Grudging respect from some foes 

Despite often being the target of their attacks, some public officials offer grudging respect to a group they have come to rely on to help keep watch over the nursing home industry. 

"Their heart is in the right place," said Chris Wiltse, who oversees state nursing home inspectors in the St. Louis region. "What they really want is what's best for the residents." 

Wiltse also envies their ability to be more candid than public officials. 

"Sometimes it's easier for them to say what it is they really feel or what it is that they really, honestly think," he said. 

If the words of some advocates are extreme, so too are some of their methods. 

King spent the week of the 2000 Republican Convention driving around Philadelphia displaying large billboards that read, "Mr. Bush, nursing home abuse and neglect should be federal crimes, what do you plan to do about it?" 

Swan, who now stays home to care for her elderly mother-in-law, recalled her days of donning disguises to visit nursing homes. Sometimes she employed one of the 20 wigs she kept. Other times she relied on clear adhesive tape. 

"You pull back your eyes and tape them so you look like a Japanese person," she said. "They never recognize you." 

She also learned how to put a tape recorder in her pocket and snake a microphone up under her collar so she could record her observations rather than raise suspicion by writing notes. 

The aide was in tears 

Swan's activities have earned her the trust of nursing home employees, who she feels are often as abused as the residents for whom they care. 

She recalled an early morning telephone call from a certified nurse's aide working at a nearby nursing home. The caller was in tears. 

"She said, 'I can't do this anymore. I've got 100 patients and I'm the only one here,'" Swan recalled. 

Swan said she drove to the home, where she found "total chaos." 

A call light board was lit up beaming with unanswered patient calls for help. A resident lay on the hallway floor. The nurse's aide sat nearby cradling in her lap the head of another resident who had fallen. 

Swan retrieved a pack of cigarettes from her car, returned inside, lighted several and walked up and down the hallways spreading smoke. She then walked to a public phone across the street and called the fire department to report smoke in the building. 

"Within 30 minutes she had all the help she needed," Swan said. 

Oklahoma's fierce advocate 

For some advocates, the work becomes an all-consuming passion. Private and professional lives are put on hold and personal bank accounts take a beating. 

Wes Bledsoe gave up his sales job in California and moved to Oklahoma after the sudden death of his grandmother in May 2000 from what he believed to be abuse and neglect. His wife, Rosemary, stayed behind, and the two have since maintained a long-distance marriage, while Bledsoe has become possibly Oklahoma's fiercest advocate. 

Today, he works 70 to 80 hours a week, arranging media coverage, working with families, organizing rallies and keeping the issue of poor care squarely in the public conscience. Bledsoe survives on meager savings, financial help from friends and relatives and a near monklike existence. 

The nonprofit group he founded, A Perfect Cause, seeks to ban nursing home officials and lobbyists from donating money to political campaigns. The organization also wants a state board set up to review all nursing home deaths; and it proposes installation of video cameras in nursing homes to deter abuse and neglect. 

In May, the group hung 900 "spirit dolls" on long lines on the state Capitol steps to represent the people they contend had died from neglect or abuse in Oklahoma nursing homes within the past year. 

"We're creating an awareness that there's a crisis and that there's no accountability," Bledsoe said. 

Oklahoma State Ombudsman Esther Houser calls Bledsoe an "acquired taste" but applauds his efforts. 

"He goes where others fear to tread or where others may have tread before and gotten run over," Houser said. "He does come on strong, and that does alienate some people that could be his allies if he were a gentler soul. He's not rude, but he absolutely doesn't mind making a scene in public or confronting people with their track records. He's made a lot of people uncomfortable. I used to be their worst nightmare. Now, I've finally got some relief." 

"It breaks my heart" 

For all their effort, many advocates wonder about their ability to end abuse and neglect. 

"There's just not enough of us," Swan said. "There's just too much of it going on. And it breaks my heart. I'm not usually one to throw my hands up in the air and give up, but I don't expect to see a change in my lifetime. 

"Where is the justice? If I did to my mother in my home what they do to people in these homes, I'd be in prison," Swan said. "It's the only business I know where they can get away with murder and it gets changed from a capital crime to a citation. What deterrent is there? No one goes to prison." 

The senior member of Congress wrapped his gnarled hands around the microphone sitting on the green felt-covered witness table and asked his distinguished colleagues: "What have the elderly in this country done to make their government and their neighbors so willing to have them starved, neglected and uncared for?" 

It was 1982 and Rep. Claude Pepper, the first chairman of the House Select Committee on Aging, was haranguing his colleagues on avoidable deaths in nursing homes. 

"This sin is no secret," said Pepper, a Florida Democrat. He cited work done by Utah's former Democratic senator, Frank Moss, who two decades earlier had conducted 30 hearings and released a 12-volume report titled, "Nursing Home Care in the United States: Failure of Public Policy." 

Now, almost 40 years after Moss first raised the issue, Congress is again trying to do something about it. 

Last month, the Senate Special Committee on Aging proposed the first federal law to comprehensively address neglect, abuse and exploitation of America's elderly. 

The 138-page bill, called the Elder Justice Act of 2002, was introduced by Louisiana Sen. John Breaux, a Democrat, Utah Sen. Orrin Hatch, a Republican, and 10 other senators of both parties. 

The bill, for the first time, calls for law enforcement to work with the health and social service agencies that have traditionally fought alone against neglect.

Congress needs facts to fight any legislative battle.

In the battle for nursing home reform, the facts are provided by congressional investigators and lawyers who have documented life-threatening deficiencies.

They are cloistered in out-of-the-way, cramped offices belonging to the Senate Special Committee on Aging, the House Committee on Government Reform, the Senate Small Business Committee and others. 

These men and women toil in anonymity, never to be quoted or photographed, deferring all public comments to the committee members for whom they work.

Yet they work with a fervor. Most spent years scrutinizing nursing homes where the stench of urine was overwhelming, or sitting by the beds of all too many emaciated or wound-infested victims of neglect. They've been made bleary-eyed from poring over the medical records of those who died, cataloging how bad care or no care killed someone's parents or grandparents.

These people and their counterparts in the General Accounting Office compiled hundreds of reports, surveys and investigations of nursing homes and their problems. The members of Congress for whom they work say the investigators' findings prove the need for extensive reform. 

"This really isn't a secret. The GAO, the congressional investigators and academic researchers throughout the country have documented nursing home problems for years, but they've been voices on the wind and nothing happened," said Lori Stiegel, who heads the American Bar Association's Commission on Legal Problems of the Elderly. 

"The nursing home lobby has tremendous power and for years has fought efforts for meaningful legislative reform, not only on Capitol Hill, but in statehouses throughout the country. They speak with much greater volume than do the advocates for the elderly." 

Members of Congress agree. 

Rep. Henry Waxman, the ranking minority member of the Committee on Government Reform who has worked for years to push nursing home reform legislation through the House, said efforts since Pepper's reign have failed because of "the power of special interests in Congress." 

"Unlike powerful corporations, nursing home residents don't have a fleet of lobbyists on Capitol Hill pressing their cause, pushing for legislation and using their influence to make sure that issue is placed on the legislative agenda," said Waxman, a California Democrat. "There hasn't been one hearing in the House since 1995 on problems in nursing homes. That's an outrage." 

It is a common belief that America's elderly are a potent force on Capitol Hill when it comes to lobbying for issues of concern to them. 

"Not when it comes to nursing homes," said Toby Edelman, a senior attorney for the Center for Medicare Advocacy. "Most of the groups supporting reform are small, underfunded and almost powerless. The larger, more powerful, organizations like the American Association of Retired Persons don't see nursing homes as a major issue. At the national level, nursing homes are not on their radar screen. Their attention is directed toward elderly who are healthly and who want to go on cruises rather than nursing homes." 

Waxman calls the elder lobby "diverse." 

"The larger groups focus on prescription drugs, Social Security, campign finance and non-legislative issues like travel and leisure," he said. 

"The size and strength of groups that focus primarily on nursing homes pales in comparison to that of organized big business." 

AARP's national state coordinator, John Luehrs, said the group has been "very active in more than a dozen states." But he added, "Nursing homes have not been a big focus for our national agenda." 

Senators target "a massive problem"

The Senate's renewed concerns about mistreatment of the elderly surfaced in 1998 under Iowa Sen. Chuck Grassley, then chairman of the Senate Aging Committee. 

"We received very serious and credible allegations to the effect that some thousands of people in California nursing homes had died due to neglect over several years," said Grassley, the state's senior Republican.

"I had to address those allegations. No one in a position to do anything could face an elderly nursing home resident suffering malnutrition, dehydration or physical or sexual abuse and walk away."

Said Breaux, who now heads the Aging Committee: "We can no longer believe that the maltreatment of our elderly is not a massive problem. The effort to end this abuse and neglect must be made now. It is the responsibility of those elected to office to take action." 

Breaux's Elder Justice Act calls for the development of an organization, structure and resources to protect and treat residents, and, when necessary, prosecute those who create conditions that allow neglect and abuse of the elderly. 

"With 84 percent of the incidents of neglect, abuse and financial exploitation never reported, this bill will elevate crimes against seniors to the national stage," Breaux said. 

The proposed legislation calls for: 

Creation of two Offices of Elder Justice in the departments of Justice and Health and Human Services. 

Establishment of a national data repository to collect comprehensive information on elderly neglect and abuse and to provide the facts to law enforcement, regulators, consumers, researchers and others. 

Increased prosecution of criminal neglect and abuse by providing training and technical and investigative coordination to law enforcement.

Development of a forensic program, which would use science and technology to investigate criminal elder neglect and abuse. Similar programs already exist for child abuse. The new program also would train health professionals in aspects of forensic pathology and geriatrics. 

Political differences can be set aside 

On Capitol Hill, party differences appear to have been set aside when it comes to protecting elderly patients. 

For example, Missouri's senators - Republican Christopher "Kit" Bond and Democrat Jean Carnahan - co-sponsored the elder justice bill introduced by Democrat Breaux and Republican Hatch. 

Bipartisan efforts also can be found in the day-by-day work of members of Congress to thwart attempts by federal agencies to weaken government monitoring of nursing homes. 

Last November, the Centers for Medicare and Medicaid Services, formerly called the Health Care Financing Administration, released a plan that would comply with a desire by the Bush White House to cut regulation of the nursing home industry. It called for reducing annual government inspections of nursing homes from once a year to once every three years. CMS also proposed that the industry be allowed to "self-report" on traditional indicators of bad care, such as the number of residents with potentially life-threatening bedsores, dehydration and significant weight loss. 

Almost immediately, Waxman and Grassley, a congressman and a senator from different parties, wrote CMS Administrator Thomas Scully, strongly denouncing the plan. Two days later, CMS said it was just a proposal and didn't mean anything. 

In February, the pair did it again.

Waxman and Grassley released a report concluding that CMS's Web site of nursing home violations was providing an incomplete picture of the performance of many nursing homes. 

Investigators found that the Web site on which the agency spent $30 million advertising failed to include more than 25,000 reports of deaths, serious injuries and other problems that had been uncovered by state inspectors. 

Soon after, the department said that it would begin including information about the serious complaint investigations on its Web site. 

Many members have demanded greater accountability from CMS for nursing home problems in their own states as well. 

Sen. Bond, for example, has been as persistent in attacking CMS' transgressions under President George W. Bush as he was under President Bill Clinton's leadership. 

An examination of Bond's correspondence shows strong letters written to Scully, just as there were to his Democratic predecessor, demanding attention to deficiencies in Missouri's nursing homes. 

"This cannot be a partisan issue," Bond said. "Legislators throughout America need to dig deep into their souls and summon up their political will and courage to confront the raw realities of the situation. 

"They must commit to do whatever is necessary to end the neglect and abuse committed upon the old, the sick and the defenseless."