•County case managers assigned to monitor developmentally disabled clients living in group homes or with their families have 90 clients, on average. That often means the most vulnerable clients receive once-a-month visits. Others receive less attention.

Oregon mental health professionals say caseloads need to be cut in half to provide effective case management.

•State oversight of group homes usually is limited to a full licensing inspection every two years, plus a less rigorous check once a year. Only homes with repeat violations receive more frequent inspections.

Oregon’s shortcomings are mirrored in group home systems across the country, advocates say.

“What you’re describing is a nationwide problem,” said Tamie Hopp, executive director of the Voice of the Retarded, an Illinois-based advocacy group. “It boils down to a lack of willingness to expend the funds necessary. As part of the decision to downsize, legislators are led to believe that community care will be cheaper, so they don’t apply the funds. The dollars don’t follow.”

State Sen. Peter Courtney, D-Salem, said the Oregon Legislature consistently has failed to provide adequate support for group homes for mentally retarded people.

“Mental health is the last thing we fund. It is the lowest priority in state government, and I don’t anticipate it getting any better.”

Courtney worries about the effects of rapid staff turnover and limited oversight on the statewide system.

“If we don’t staff them right and monitor them right, they will flat-out fail,” he said. “I’m worried that some of the people are going to fall through the cracks.”

Studies of the mortality of the mentally retarded in community programs have found mixed results. While some research indicates higher death rates at institutions, a 1999 University of California, Riverside, study concluded that people in group homes have an 88 percent greater risk of dying than those in institutions. Researchers cited lack of access to health care and other specialized services as key factors.

Dr. Tina Kitchin, medical officer for Oregon’s Office of Developmental Disability Services, dismissed the value of mortality studies, saying that data sets tend to be small and that medical issues vary widely among populations.

“Small differences can get blown way out of proportion,” she said.

Kitchin and other officials said they were troubled by the recent series of neglect-related deaths here. But they stopped short of saying they reflected a pattern of poor care, neglect or mistreatment.

“Any death where there is substantiated abuse is a very troubling thing,” Kitchin said. “Were there things that needed to change? Absolutely. We’re doing things differently because of each one of those seven.”

Cases reveal home dangers

Among the fatalities:

•Shortly after midnight Jan. 1, 1999, a mentally retarded man fell in the restroom at a Seaside tavern and broke his neck. The fall came after the man consumed as many as seven beers. He toppled backward while standing at a urinal, striking his head on a wall. Investigators concluded that a group home staffer who escorted the man should not have left him unsupported at the urinal.

Records indicate the group home resident had previous problems with alcohol consumption, including falls and crashing his bicycle into a pickup. His caregivers tried but failed to limit his drinking to three beers a week at the home. They reportedly had no plan to deal with his drinking outside the home other than to provide transportation to and from a tavern.

The group home provider, Coast Rehabilitation Services, also has been embroiled in a financial scandal that resulted in criminal charges against three former executives accused of stealing public money meant for developmentally disabled adults.

•On Feb. 4, 1999, a mentally retarded resident drowned in a bathtub at a Multnomah County group home. Staff at the home told investigators that the victim received a wrong dose of medication less than two hours before drowning. The mistake caused the victim to become drowsy, slip under the water and drown.

Investigators found that the group home had no written procedures for keeping watch on the victim while bathing, even though he had a history of seizures. They determined that group home staff neglected the victim by failing to provide constant supervision.

•On Nov. 5, 1999, a profoundly mentally retarded man who went days without eating or drinking at his Salem group home died of seizures at Salem Hospital. Gary Avery’s death came less than two months after he was moved from Fairview and placed in a local group home operated by Partnerships in Community Living, a nonprofit agency based in Monmouth.

Investigators found that group home staff neglected Avery by failing to combat his refusal to take nourishment in the weeks leading up to his death from seizures.

The Statesman Journal obtained the death investigation reports by filing a public records request with the Office of Investigations and Training. Agency officials released edited records, blacking out the names of retarded people, caregivers and group home providers.

Officials, however, refused to release victims’ identities, citing provisions of state laws protecting the confidentiality of disabled people involved in abuse or neglect investigations. Avery’s identity was made public by former Fairview employees outraged by his death.

Various reasons were given for the recent surge in neglect-related fatalities. Group home critics said it buttressed their claims of inadequate care and supervision.

But officials said that recent death investigations dug much deeper than past probes. Accordingly, they said, more findings of neglect have resulted.

Eva Kutas, manager of the Office of Investigations and Training, said the recent cluster of deaths also underscored the fragile conditions of many people who were moved out of Fairview during recent years. “You’ve got folks with more complex medical issues who have been going out into the community,” she said. “Some of these folks (who died) were incredibly medically fragile.”

Mental health officials and group home providers said community homes generally are well-equipped to deal with severe disabilities. Even so, the recent deaths heightened some people’s worries about how former Fairview residents are faring in community homes.

“Community care cannot match the type of intensive care that you’d have at a developmental center, especially for those people who fall into the categories of being either severely or profoundly retarded,” said Sid Stuller, president of the Oregon Voice of the Retarded. “They’re not going to be the boxboys at Safeway and the busgirls at somebody’s restaurant. They simply don’t have the capability. They require more supervision just to keep them alive, and that’s what they received at Fairview.”

Stuller’s daughter, Mary, was one of the last residents to leave Fairview. Sid Stuller fought to keep her there as long as possible because he believed that she was safe. Her earlier bad experience with group home living — she was sexually abused and neglected at a home during the 1980s — compounded his worries.

Stuller said he has no confidence in the state’s ability to protect former Fairview residents who move into community homes. He suspects that many cases of mistreatment remain hidden due to a lack of inspections.

“I believe the lack of monitoring is disgraceful,” he said. “My fear is that there’s a lot more abuse and neglect and mistreatment going on in the group homes than is being reported. My fear is that there are a lot more agencies experiencing difficulties than the mental health administration might be aware of. And my fear is that there are going to be more injuries and possibly more deaths before anything is done.”

Courtney said he worries about not having “a backup” to the group home program in Western Oregon.

“I’m still not convinced that at some point we won’t decide that we need to locate a certain number of these people in an institutional setting,” he said.

As it stands, the Eastern Oregon Training Center in Pendleton is the state’s sole institution for people with developmental disabilities. It houses about 80 residents. Thus far, the state has not announced any plans to close it.

Homes seek reintegration

Group homes are not a new phenomenon. Starting in the 1960s, they have fit with a philosophy of reintegrating mentally retarded people into society and sheltering them in caring homes in the community.

Almost four decades ago, that philosophy was promoted by a president with a sister who was mentally retarded. President John F. Kennedy proposed replacing sterile state institutions with a network of smaller community homes.

During the past 30 years, the number of institutionalized Americans with developmental disabilities has dropped from almost 200,000 to fewer than 50,000. The massive shift away from institutions spawned a burgeoning $11 billion group home industry consisting of more than 40,000 residential programs nationwide.

Oregon’s group home industry has a long, solid record of housing people with wide-ranging disabilities, said Tim Kral, executive director of the Oregon Rehabilitation Association, which represents group home providers.

“From our perspective, it has been a 35-year process,” Kral said. “In the last 10 years, I suppose, we’ve seen more people with severe medical needs and severe behavior needs. We started with the people who were easier to place.”

Systematic reductions in Fairview’s population began in the 1970s, when state funding was made available for community-based programs. The push to empty the institution was spurred during the 1980s by reports of poor treatment and abuse of residents.

In 1987, the U.S. Justice Department charged Fairview with violating the civil rights of residents. Regulatory reports from that era gave accounts of residents repeatedly hitting, biting or scratching themselves, banging their heads against walls or grabbing, kicking or pulling the hair of others.

The federal government, which supplied 60 percent of Fairview’s funding, briefly cut off payments in the late 1980s. Gov. Neil Goldschmidt toured the institution with regulators. Appalled by the living conditions, he promised reforms.

The Justice Department held Oregon to Goldschmidt’s promise through a legally binding document called a consent decree. It spelled out the government’s marching orders for Fairview, including additional population reductions.

As the state steadily reduced Fairview’s population, the number of group homes mushroomed. In 1985, there were 86 community homes throughout Oregon, including 10 in Marion County. In all, they housed almost 900 people.

By January of this year, the number of community homes across Oregon had swelled to 553, including 94 in Marion County. Collectively, they were sheltering more than 2,780 people.

Turnover seen as the top threat

Most group homes house five or fewer people. Staffing varies, but a typical pattern calls for three shifts, with two staff on duty during day and swing shifts and a lone worker on duty during the graveyard shift.

The basic idea is to give residents a living situation that more closely resembles the norm for the rest of the community.

Some group homes are state-operated but most are run by private nonprofit agencies that hire and train their own staff.

The average hourly wage for caregivers — about $8.25 — is widely regarded as inadequate to retain employees.

“Hiring and keeping staff is our major challenge and will continue to be for years,” Kral said.

Staff turnover rates averaged about 85 percent last year throughout the state, and they were even higher in the Willamette Valley.

“If you analyzed it more closely, the metro programs — those along I-5 in Portland, Salem, Eugene, Roseburg, Medford — basically had 100 percent turnover,” Kral said.

James Toews, assistant state administrator of developmental disability services, ranked turnover as the most serious problem facing the community home network.

“If there’s any single issue that worries me, that’s it,” he said. “We’ve put over $30 million into increasing wages and benefits for our group home staff in the last three or four years, and the turnover rates have remained about the same.”

Some people question the competency of neophyte caregivers who receive relatively little training and low wages, yet perform critical tasks such as dispensing medications.

“Who do you get? Well, you get people in (drug and alcohol) recovery,” said Bud Breithaupt, a former president of the Fairview Parents and Guardians Association and a longtime foe of the push to empty the institution. “That’s not to say everybody doesn’t need a break and a second chance, but I think some jobs work better for people who are in recovery than working with severely handicapped people.”

The group home industry also tends to attract many young employees, amplifying concerns about qualifications and experience.

By consensus, relentless turnover is a larger concern because it prevents close ties from forming between caregivers and residents, disrupts staffing continuity, requires employers to spend more time and money on training, and puts heavier burdens on veteran employees.

“For the staff who are still there, we’re always worried about burning them out with too much overtime,” Kral said. “The toll it takes on them is very real.”

State conducts multiple visits

Although Fairview was regulated by the federal government, the state acts as the licensing agent and watchdog on group homes.

State inspectors make regular licensing visits to all group homes once every two years. In addition, they show up once a year for smaller inspections, called midcycle reviews.

Some advocates complain that inspections are too infrequent to ferret out problems. Others say the monitoring approach is too narrow.

“There is no quality assurance system in this state,” said Paula Blue, executive director of The Arc of Oregon, an advocacy group that supported Fairview’s closure. “The state has licensing procedures, but those procedures do not look at outcomes for people. They look at things like, are the corrosives locked up?”

Blue said the focus on health and safety issues ignores whether improvements are being made to individual lives. “I think the division has been very responsible in saying that you have to meet some minimum standards of care by virtue of providing safety and health for people. But that’s only half of anyone’s life. There’s a whole other half that needs to be looked at, and that’s having a life that is purposeful and meaningful.”

Between state inspections, county mental health departments are supposed to keep tabs on clients. But the average caseload includes about 90 people — including those who live with their families and those who reside in group homes.

Typically, only those clients deemed medically fragile or with behavior problems receive monthly in-home visits from case managers.

Blue said heavy workloads force case managers to put paperwork ahead of people. “The caseloads are 100-1 in some places. Certainly, they’re above 75-1 in many places,” she said. “You’re not doing any real service coordination when you’re stretched that far. You’re not doing people management. You’re doing paper management.”

Mental health officials acknowledge that case managers have large caseloads. But they deny that vulnerable people are left in jeopardy.

“We’ve got case managers assigned to do at least monthly checks on every individual with medically fragile or behavioral challenges,” said Toews, the state’s administrator of services for people with developmental disabilities. “Obviously, we’re going to monitor the heck out of people that are most at risk.”

Again, critics tell a different story. All too often, they say, caseworkers and regulators find out about abuse, neglect or mistreatment only after something terrible has happened.

“That’s the really scary part of this thing,” said Breithaupt, whose daughter was moved from Fairview and placed in a group home about a year ago. “I’m confident as we speak that there are too many people who are in trouble in the community. But we don’t know about them and maybe won’t ever know about them unless you end up with a Gary Avery situation or some variation on that theme.”

Avery’s death prompts checks

Gary Avery’s well-publicized death heightened many concerns about the group home system.

Avery, 45, had lived at Fairview since he was 5. He was profoundly retarded, couldn’t talk, and was unable to push his wheelchair more than a short distance.

Last summer, he was among the final 100 residents awaiting moves to community homes. In September, he was moved to a Salem group home operated by Partnerships in Community Living.

Avery rapidly lost weight at the home, slipping from 135 pounds upon his arrival to 123 pounds about a month later.

When group home workers brought him back to Fairview for an Oct. 11 visit, Avery appeared dirty and emaciated, according to several Fairview employees. They wrote letters to authorities, describing Avery’s condition in hopes that Marion County or the state would investigate.

Fairview supervisors and other state employees failed to immediately relay the information to Marion County for a decision whether to launch a protective service investigation into possible abuse or neglect. Indeed, no such investigation was done before Avery’s death.

By the time county mental health officials received the information, Avery had been hospitalized for the second time since leaving Fairview. He died Nov. 5 at Salem Hospital. Seizures were listed as the cause.

Group home staff neglected Avery in the weeks leading up to his death by failing to properly monitor his food and fluid intake and by not developing a plan to counter his refusal to eat, investigators found. But the state report stopped short of saying that the neglect caused Avery’s death.

Mental health officials described Avery’s case as a systemwide failure, fraught with lapses of communication and mistakes made by the group home, medical providers, Marion County and the state.

His death prompted officials to order checks on nearly 160 “high medical needs” people living in group homes and foster homes. Overall, officials said, those reviews have detected few problems.

Despite weaknesses in the group home system, mental health officials who spearheaded the push to close Fairview adamantly assert that it was the right thing to do.

“I’m totally confident,” Toews said. “We’re not charting brand new territory here. I think we’re simply finishing what was begun many years ago.”