01:00 AM EST on Sunday, December 19, 2004

BY JENNIFER LEVITZ
Journal Staff Writer

The way the state Health Department investigates nursing homes and the limits on the disclosure of information from its investigations make it hard for the public to get accurate information about the quality of care.

For consumers, who need reliable information before choosing a nursing home, there is no complete public record of the quality of care in nursing homes in Rhode Island, a Journal investigation has found.

For policymakers, who rely on databases to track trends in complaints and problems, the state produces data that may be flawed because of the way inspection reports are altered within the Health Department before public disclosure.

Recent revelations about gaps in Rhode Island's regulation of nursing homes have thrown the industry into turmoil, as evidenced by public inquiries, police investigations and calls for reform from the governor, lieutenant governor and legislators.

Much of the scrutiny has been directed at the state's ability to identify significant problems and move quickly enough to protect the 9,200 residents of the 100 nursing homes in Rhode Island.

More than 1,200 reports of problems in Rhode Island's nursing homes came into the Health Department last year.

Most of them just vanished.

THE CASE of Russell J. Bowden, of Cumberland, almost disappeared inside the Health Department -- until his family raised hell.

Bowden, once a Stop & Shop meat-cutter, arrived at the Oakland Grove Health Care Center in Woonsocket, from home, in early November last year. He was 65.

Bowden had lost his legs to bad circulation. His arms were useless from a stroke. His wife, Janet M. Bowden, believed her husband had a year or two left; she welcomed Oakland Grove's assurances that the nursing home would do everything it could to care for him.

On Nov. 13, the nurses at Oakland Grove determined that Bowden should be monitored for his daily intake and output of fluid to prevent dehydration. He could not drink on his own; also, according to his medical records, he had trouble swallowing.

On Feb. 8, he was hospitalized at Landmark Medical Center with dehydration so severe his kidneys were failing.

On Feb. 10, Janet Bowden filed a complaint with the Alliance for Better Long Term Care, a Warwick agency that has a contract to serve as the federally mandated ombudsman for the elderly in Rhode Island. The alliance told Janet Bowden her complaint would be handled by the Health Department.

That same day, Raymond Rusin, chief of facilities regulation at the Health Department, sent Janet Bowden a form letter saying there would be an investigation.

The state had cited the 183-bed Oakland Grove in 2002 and in April 2003 for harming residents. The Health Department had last visited Oakland Grove in June 2003. "They had corrected all those issues," Rusin said.

Russ Bowden was released from Landmark on Feb. 17, to Hattie Ide Chaffee Nursing Home, in East Providence. Janet Bowden said he received excellent care there until his death on March 10, of complications from stroke.

In April, she called the Health Department and was told there was "no basis," she says, for her February complaint about Oakland Grove. "You can't imagine how angry I was," she says.

She says she asked how Oakland Grove justified her husband's condition when he arrived at Landmark. Had inspectors checked hospital records? She was told, she says, that the Health Department doesn't do that.

Health Department spokesman Robert J. Marshall Jr. said inspectors can check hospital records, but don't always need to.

Janet Bowden called the Health Department two more times, trying to get answers. In May, she received a form letter from the department, confirming that her case was closed; it said an investigation had been done on Feb. 23, and that investigations typically include interviews with staff and a review of records.

She asked for a copy of the investigation report, but was refused. Under Health Department policy, records of complaint investigations are secret, including to the person who complained.

THE U.S. CENTERS for Medicare & Medicaid Services in the federal Department of Health & Human Services pays the states to inspect nursing homes that get money from Medicare and Medicaid, the government's insurance program for the needy. The inspections must be done every 9 to 15 months.

The federal government also requires that states investigate complaints about nursing homes.

The state sends reports of deficiencies, found either in annual inspections or complaint investigations, to the Centers for Medicare & Medicaid Services, which keeps a database to monitor quality of care and set national policy. Deficiencies can lead to fines or sanctions against the home.

The government also uses the data to publicly rate nursing homes on its national consumer Web site Nursing Home Compare. Until two years ago, the Web site did not include records of deficiencies found during complaint investigations.

U.S. Rep. Henry A. Waxman, D-Calif., and Sen. Charles E. Grassley, R-Iowa, looked at complaint investigations for 60 nursing homes and found that many had violations -- some causing death -- that were not included on Nursing Home Compare. The federal government quickly put complaints on its Web site.

When the results of complaint investigations were disclosed, people were shocked at what had been shielded from the public, said Janet Wells, the director of public policy for the National Citizens' Coalition for Nursing Home Reform, a nonprofit advocacy organization in Washington.

She said complaints can give an honest picture of conditions. They come from families and employees who are at nursing homes at all hours, while inspectors come once a year, and, she believes, are expected.

"The states would like to brush complaints away," she said.

IN RHODE ISLAND, most information about complaints stays secret.

The Health Department's Web site rates the state's 94 Medicaid-certified nursing homes in five areas: administration, nursing, residents' rights, food service and environment. The state's Web site says its ratings are a way to "aid consumers in their choice of a nursing home."

Deficiencies found during annual inspections are reflected in the ratings on Rhode Island's nursing home Web site.

But the Web site says the ratings do not reflect the results of separate complaint investigations, even those that find serious deficiencies and harm to residents.

Why not?

"There's nothing wrong with doing that," said Rusin, Rhode Island's chief of facilities regulation. He said, however, that it would take time and resources to develop such a Web site.

He said Rhode Island's nursing home ratings are based on a model used by the Department of Public Health in Massachusetts.

Yet, the Massachusetts Web site for consumers says that "complaint or serious incident" investigations that result in deficiencys are included in the scoring.

The public can get information on just some "substantiated" complaints at the Health Department offices at 3 Capitol Hill, Providence. There aren't many.

THE ALLIANCE for Better Long Term Care received more than 3,200 calls last year, according to Roberta M. Hawkins, the agency's executive director.

Those calls included complaints about nursing homes from families and employees. The alliance, Hawkins says, refers serious complaints about care to the Health Department.

The Rhode Island Health Care Association, the largest lobby for the state's for-profit nursing homes, testified to the General Assembly's Joint Committee on Health Care Oversight on Oct. 25 that the industry's diligence in reporting its own problems to the Health Department drives up complaint numbers. Lobby chairman Hugh J. Hall, a nursing home administrator, said most complaints come from the industry and have a "plan of correction" already attached.

By law, nursing homes must file "incident reports" on falls and more serious matters such as allegations of resident abuse.

"We all agree," Marshall, the Health Department spokesman said, that the industry accounts for about two-thirds of the reports of problems at nursing homes.

There's no way to confirm the origins of the complaints to the Health Department. The department declined a Journal request to view all the nursing home complaints. In January, the federal government began requiring states to start reporting the total number of complaints received. Rhode Island is among the states that have not yet reported.

The Health Department, Rusin said last week, received 1,271 nursing home complaints between Oct. 1, 2003, and Sept. 30, 2004. The Health Department investigated 781 complaints, he said.

According to data from the Centers for Medicare & Medicaid Services, Rhode Island reported that it had substantiated 82 complaints during that time.

The data show that of those 82 substantiated complaints, 57 resulted in deficiencies, which became part of the nursing homes' public record.

ONE OF the complaints that didn't result in a deficiency came from Nancy Costa, who says her mother was molested at a nursing home.

Costa, a registered nurse, called the Health Department on June 28 to report that a female nurse's aide at a Rhode Island nursing home twice molested her mother, in her room and in the beauty parlor. Costa had learned about the incident from the nursing home's administrator. She said she also had obtained a police report.

On Aug. 10, the Health Department wrote Costa saying it had substantiated her complaint, but had not given the nursing home a deficiency because "the nursing home had taken appropriate action." That meant the incident would not be included in the nursing home's public inspection record.

The Health Department did refer her complaint to the attorney general's office.

Rusin said it can prove difficult to substantiate complaints.

Is it resources?

He said he is not short-staffed in facilities regulation. He needs 21 inspectors to complete the federally required nursing home work, and complaint investigations for nursing homes, and he has 25.

"Technically, I've got the bodies," he said.

Rusin said that sometimes those nursing home inspectors get pulled off to do other state work.

In keeping with federal standards, Rusin said, allegations of "immediate jeopardy" at a nursing home are investigated within two working days.

He said allegations that a nursing home has caused "actual harm" are investigated within 10 working days.

He emphasized that doesn't mean investigators have to get to the nursing home within 10 days. "Sometimes that means calling an administrator or nursing home and saying 'can you provide me with more information on this situation?' "

According to two nursing home employees, an administrator will sometimes seek out those who call to complain.

Linda Graham, a nurse for 37 years, said she called the Health Department anonymously nine months ago while working at a nursing home. She claimed infected respiratory patients were being moved in with regular residents to save room.

Minutes later, Graham says, every nurse was called in to a meeting with the administrator.

"She wanted to know who made the phone call to the Health Department. I'm thinking, 'I'm not going to say I called on them,' " Graham says.

James McParlin, a former worker at a nursing home, said he wrote the Health Department last year. He claimed that the food he had to serve was "unfit for human consumption."

"Although my complaint was ignored, administrators were made aware of my complaint and by whom," he said.

Rusin said low-priority complaints are investigated within four months or during the next annual inspection.

Janet Proulx says she told the Health Department on Oct. 6, 2003, that staffing at one nursing home was "dangerously low." Proulx, a spokeswoman for Bryant University, said she complained that her mother was always thirsty because workers weren't giving out water, and that her mother was soiling herself because she waited a half-hour for someone to take her to the bathroom.

"I was told they had received a bunch of complaints and were going to go in and do a thorough investigation," she said.

In January, she received a form letter. "They had visited the facility but found none of the problems I spoke of." Proulx moved her mother.

Rusin said complaints "continue to be a major topic of discussion" in the nursing home industry and among regulators. The issue is "facility culpability," he said.

The industry is saying, he said, that if an employee comes in and has had a bad day, and does something bad, "is the facility culpable in any way because of the incident?"

" 'Unsubstantiated' doesn't mean it didn't happen," he said, "but that there's not enough evidence to show culpability."

BEFORE THE RESULTS of substantiated complaint investigations are made public, Health Department supervisors toss out or quiet some deficiencies found by inspectors, The Journal has found.

The informal procedure is known internally as the "QC" -- for quality control.

After every inspection, including complaint investigations, one or two members of the field inspection team must appear before a panel of supervisors, who grill the inspectors to ensure their reports will hold up to legal challenges from the nursing homes.

"Sometimes, surveyors have a legitimate deficiency; they just don't have the evidence," Rusin said.

"Do we have the evidence . . . and is this going to steer the nursing home in the right way?" Rusin said. He said his main goal is to steer nursing homes the right way.

Even an "egregious" incident, Rusin said, can get removed.

"If they didn't collect the right information and it won't hold up in a hearing or court, there's no sense putting it out there," he said.

After the Quality Control process, the inspection report may be changed.

Asked if the Health Department saves the original inspection report, Rusin said some staff members do, but "we haven't established a protocol for doing that."

He said the QC predates him and is not a federal mandate, though he says federal regulations require deficiencies to be meet legal standards. The QC is a creature of the Rhode Island Health Department.

Rusin said some states say the inspection report is final at the nursing home; inspectors turn over reports to nursing homes on the spot. He doesn't agree with that.

"That does not give you the opportunity to make sure the surveyor is doing the work [he] is supposed to do."

A verified complaint that makes it through Quality Control still might not become a public record.

That's because nursing home operators can challenge deficiencies before the findings are made public, through an Informal Dispute Resolution, a process fought for by the national nursing home industry when Congress passed the Nursing Home Reform Act of 1987.

"About 25 to 30 percent of the time, they make a request," Rusin said.

A nursing home, he said, might provide some material that was not there when the surveyor was there.

Rusin said that about one-third of those requests will cause a change or the removal of a deficiency.

AFTER JANET BOWDEN was told she had no basis for her complaint, she pressed on, even after her husband died.

In June, Bowden wrote to Rusin and Lt. Gov. Charles J. Fogarty. The Health Department reopened her case and on June 25 returned to Oakland Grove, which is owned by Athena Healthcare, a Southington, Conn., chain with 30 nursing homes and assisted-living homes in New England.

In this investigation, Janet Bowden was proved right. The new investigation found that Oakland Grove had stopped monitoring Russell Bowden's hydration when he was moved on Jan. 21 from the skilled nursing unit to the long-term care unit. Janet Bowden says she was told her husband, a Medicaid patient, was being moved to a quieter room.

"Following the transfer, there was no documentation of this resident's fluid intake and output," the inspector discovered.

The inspector wrote that a nurse said Oakland Grove doesn't routinely do intake and output monitoring for residents on long-term care.

The inspector found a note, dated Jan. 31, that documented Bowden's trouble swallowing. The inspector wrote: "Even when a decline in his swallowing ability became evident on 1/31/04, nursing failed to monitor his hydration status through I & O records."

On Feb. 2, the inspector found, a speech therapist noted in Bowden's chart that he was having trouble staying awake. "There was no evidence this assessment was communicated to a physician" the inspector wrote.

According to the June investigation, between Feb. 2 and Feb. 8, Bowden grew "progressively less responsive."

On Feb. 8, Bowden was taken to Landmark Medical Center and diagnosed with severe dehydration, the inspector wrote.

The inspector talked to nurses on the skilled nursing unit, where Bowden was before he was moved. The nurses said Bowden should have continued on "intake and ouput monitoring . . . due to his inability to effectively swallow and his physical dependence on staff for fluid intake."

The inspector determined that Oakland Grove didn't provide Bowden with enough liquid to "maintain proper hydration and health."

The Health Department gave Oakland Grove a serious deficiency for causing harm to Russ Bowden.

What happened during the first inspection, in February?

On Dec. 8, a Journal reporter tried to interview one of the inspectors for Oakland Grove. The inspector, Norman Laliberte, who is a nurse and also a Woonsocket city councilman, said he recalled the Bowden inspection, and that he would talk with the newspaper if his supervisors said it was OK.

Marshall, the spokesman, said The Journal should not have gone around him to talk to a Health Department employee at home.

He said that by asking an employee about an "official investigatory matter that may involve confidential health care information, you appear to expect the employee to violate both legal and ethical restrictions on the release of information. I fail to understand how this is in the public interest."

RUSIN SAID Janet Bowden's complaint had been "investigated as part of survey process along with several other complaints. The surveyor used the standard investigative process we use, and at that time determined it was unsubstantiated."

"We didn't look at that the right way, it should have been cited. That does happen," Rusin said.

Janet Bowden got the results of the new investigation in September, after she wrote Rusin, and sent copies to Health Director Dr. Patricia A. Nolan, Lieutenant Governor Fogarty, U.S. Rep. Patrick J. Kennedy and The Providence Journal.

"My family worked so hard for my husband, to do what we could for him. We found out just what they didn't do. My children have been so upset," she said. "Finally, when we got a copy of the investigation and it was there, in black and white just how bad it was. It proved what we knew all along. It's not just my word -- it's in black and white.

"I feel like the Health Department covered up for the nursing home," she said. "I think they thought they could tell me my complaint was unsubstantiated, and that I would be one of those families who just goes away."

Several other complaints were coming into the Health Department about Oakland Grove. In one, in August, Oakland Grove employees told the Health Department that a nurse ignored a 93-year-old woman as she choked, and that the nursing home hadn't reported the incident to the state. The attorney general's office charged three employees of Oakland Grove with neglect in connection with her death.

Oakland Grove issued a statement Sept. 29, pointing to its "record of exceeding industry standards." The nursing home said its deficiencies had "decreased dramatically" since last year, and that only four deficiencies -- three for record keeping -- had been found in the most recent annual survey.

There was no mention of the deficiencies from the recent complaint investigations.

On Oct. 9, Health Department inspectors went to Oakland Grove to check on nine complaints, and stopped new admissions to the nursing home, when it found "many deficiencies, several at the actual-harm level," said Marshall.

Rusin said the media attention brought more complaints.

On Nov. 10, regulators checked on 17 complaints.

Oakland Grove's administrator Antonio Sousa appealed to the Health Department to erase four serious substantiated complaints on the Oct. 9 report, according to Health Department records.

Rusin agreed to modify one deficiency, to remove an inspector's findings that Oakland Grove had not given an antibiotic prescribed for a man with shortness of breath. He'd been taken to the hospital with staph pneumonia, cellulitis and gangrene.

Oakland Grove submitted its Internal Dispute Resolution with "supplemental documentation," Rusin said. He said it was credible.

Rusin wrote Sousa that "your official federal record will reflect the changes made as a result of your request."

The inspection report was released to the public, with the changes, on Dec. 8, but the deficiencies won't become part of Oakland Grove's rating on the Health Department's Web site because they came from a complaint investigation.

Donald C. Williams, the associate director of health services regulation at the Health Department, said Friday that consumers would be better served by having complaint data included in the ratings. He said it would a matter of looking at resources in the Health Department.

On Dec. 10, the day The Journal planned to meet with the Health Department for an interview about complaints, the department said it would not be able to meet.

That day, the department issued a press release announcing that it would bring in an outside consultant to study the complaint process and make recommendations by March. The statement said the Health Department had already been working on improving its handling of complaints, with the push for nursing home reform. Health Director Nolan said that responding to complaints is a "key issue for assuring safety and quality health care in Rhode Island."

Jennifer Levitz can be reached at 277-7931 or jlevitz [at] projo.com

Look back at recent Journal coverage of nursing homes in Rhode Island, and find related Web resources on nursing home performance, at:

http://projo.com/extra/2004/nursinghomes/