Growing Concern : Private Care for Retarded--a Gamble

It was that rare social program, promising to be both economical and humane.

The idea was to take thousands of mentally retarded patients out of California’s big, dismal state hospitals and place them instead in less expensive, more homelike settings in the community.

But now that the program has been in operation for about two decades, it is not at all clear how much money is being saved, and there is growing concern that private facilities can be a lot more dangerous for patients than state hospitals, where living conditions for the retarded have greatly improved.

Many parents of retarded patients throughout California are in fact fighting to keep their children in state hospitals and out of privately-run homes.

‘Russian Roulette’

“I would say generally this game of placement in the community is Russian roulette,” said John Chase, a veteran advocate for the retarded and a member of the advisory board of Camarillo State Hospital, where his daughter is a patient.

“My daughter might go to a community facility and get excellent care,” said Chase, “and she also might go to a community facility and get killed.”

An investigation by The Times into care for the mentally retarded in California shows that placing patients in privately run facilities can indeed be a deadly gamble. Although many such facilities appear to provide quality care, many others do not.

Licensing and court records, visits to private facilities and interviews with officials, parents, patients and care providers show a widespread pattern of lethal neglect, physical and sexual abuse and financial exploitation of retarded people living in privately-run facilities throughout the state.

The Times found that retarded people in private facilities in California often are housed in substandard conditions in the care of poorly paid, untrained employees, some of whom have criminal records. The retarded residents of these facilities sometimes are blind, deaf or crippled and so impaired mentally that they are unable to speak for themselves or to complain. At the same time, state and private agencies responsible for ensuring safe and proper care often are slow to remove patients from apparently dangerous facilities.

For example:

- On Nov. 19, 1987, a retarded 29-year-old woman was discovered dead in her bed in Sylvia’s Cultural Center, a run-down home for retarded and mentally ill clients west of downtown Los Angeles. The young woman’s abdomen was so swollen that investigating officers mistakenly thought she was pregnant. She had died of peritonitis in what state licensing officials say must have been an excruciatingly painful death. Her bladder--diseased by a neglected infection--had burst and filled her abdominal cavity with poisonous fluids, according to official reports. Lois Maria Miller, manager of the home, said the victim was seen by a doctor every month and denied that there was neglect. Some patients were removed from the home a month later and the license of the facility was suspended last May.

- El Rancho Calimesa, a facility for cerebral palsy victims and the retarded in San Bernardino County, faces a hearing before a state administrative law judge into charges by the state Department of Social Services that the brother of a former staff member sexually molested a patient in the home on July 10, 1987, and that “on numerous occasions” the former staff member “threatened clients . . . with a gun to their heads as a method of controlling behavior” and used a gun to threaten other staff members into bringing him drugs and alcohol. The home is still operating.

- A retarded woman gave birth to a baby while in a bathroom of the Lois L. Jones Family Home in South-Central Los Angeles in January, 1986, according to police and licensing reports. The infant was drowned, apparently in the toilet, and was left outside in a trash can, according to police and coroner’s reports. Licensing inspectors, seeking an emergency closure of the home, also said that the memory of the proprietor was so impaired that she could not care for the residents. Officials also complained that the proprietor’s son, who has a long, violent criminal record, was staying in the home. The license of the facility finally was suspended in March, 1987, more than a year after the death of the newborn child. An attorney for the state said the delay was caused by a shortage of legal staff.

- In February, 1986, three retarded residents of a home near San Diego died in a fire at the facility. Nayoma Jeannette Raleigh, manager of the home, was accused of turning off the fire alarm a week before the blaze and was subsequently convicted of manslaughter. David Giles, a former resident of the home accused of setting the fire, pleaded guilty to manslaughter.

- A 16-year-old autistic boy in the care of the Horizon House in Long Beach died Aug. 29, 1987, when staff members of the home allegedly delayed getting emergency medical treatment for the youngster after he began throwing up blood, according to state licensing reports.

Five days before his death, licensing inspectors had sent documents to Sacramento seeking emergency closure of the home because of alleged neglect of residents. Horizon House was closed by state officials 2 1/2 weeks after the death.

Mark Katz, former executive director of Total Living Continuum Inc., a chain of homes that included Horizon House, acknowledged that staff members of the home were relatively young and inexperienced but denied that they were negligent.

Katz’s chain of homes has gone out of business.

- From May to July, 1987, residents of a Behavior Research Institute home in Orinda in the San Francisco Bay Area were beaten by a staff member who has a criminal record of arrests for attempted murder and convictions for burglaries, according to a complaint by state Department of Social Services attorneys seeking revocation of BRI’s license. The staff member beat one resident with a “belt and/or a stick” and struck another resident in the face with his hand, according to a formal state accusation. The home was voluntarily closed.

BRI attorney Roderick MacLeish said he does not know whether the abuse allegations are true. He said BRI had sent the suspected employee’s fingerprints to the state for a background check as required and was not informed of the criminal record until after the alleged beatings.

- A June, 1987, state licensing inspection of the Golden State Habilitation Center for the retarded in Baldwin Park--operated by nursing home chain Care Enterprises--found that despite repeated citations for poor conditions in previous years, “clients and facility personnel continue to live and work in an atmosphere of uncleanliness, foul odors, disrepair and roach infestations.”

A subsequent inspection last spring resulted in 75 pages of cited deficiencies, including allegations of neglect of patients who were unkempt and suffered from eye and heavy nasal discharges, dozens of patients below ideal body weight, lack of development programs, spoiled food stored in the refrigerator, lack of a proper diet, medication errors and lack of supervision.

Care Enterprises, which filed for bankruptcy last spring, nevertheless reported a profit of $34,861 on the Golden State Habilitation Center in 1987. The chain reported making $123,272 on the facility the year before.

The home is still in operation.

“We have made significant staff and management changes,” said Bill Izatt, spokesman for Care. “We’ve spent a considerable amount of time and money in correcting the problems and we now feel this facility is doing quite well and providing quality care to our residents.”

- In November, 1987, the International Castle Guest Home for the retarded, an old run-down two-story house on South Avalon Boulevard in Los Angeles, was cited by licensing officials in connection with two deaths.

In one case, inspectors cited the home operator after staff members of the facility allegedly failed to administer proper first aid or promptly call paramedics when a 48-year-old retarded male resident choked to death on a steak bone Sept. 11, 1987. The citation carried no fine.

Bessie Anderson, operator of the home, maintains that all her staff members are properly trained in first aid and had promptly summoned paramedics.

The previous April 2, a 52-year-old severely retarded male resident of International Castle was hospitalized at Martin Luther King Jr./Drew Medical Center with multiple fractures after being hit by a car, according to state inspectors. On April 22, he was released back to the home and six days later he was readmitted to the hospital in a comatose state, according to a coroner’s report. He died April 30 of sepsis caused by his infected car accident wounds and complicated by pneumonia, according to the coroner’s report.

Licensing inspectors indicated that the hospital may have released the resident back to the home prematurely and cited the home for admitting a patient in a condition that the staff was unqualified to care for. The citation carried no fine.

“We did not admit him,” Anderson said. “They brought him, left him on the porch and took off. . . . We got him back to the hospital as soon as we could.” The home is still in operation. Anderson maintains that “there was quite a bit of repair done on that facility.”

Anderson also operates a larger facility on South Main Street that houses 33 retarded residents, some of whom are severely handicapped physically as well as mentally impaired and some of whom are blind.

The facility--a cluster of run-down apartments with walls covered by gang graffiti--was cited last March with 18 pages of licensing violations, including general disrepair, broken-down furniture, inoperable lamps, a toilet with no seat and rodent droppings on food storage shelves. Anderson refused comment.

The home is still in operation.

Lanterman Act

The list of such conditions and occurrences goes on and on throughout the state.

This was not the way it was intended to be, of course.

California’s Lanterman Mental Retardation Act, adopted in 1969 and regularly amended since then, provides that mentally retarded people have the right to treatment in “the least restrictive” setting possible.

The subsequent reduction in the number of mentally retarded patients in state hospitals paralleled the “deinstitutionalization” of the mentally ill.

But when mentally ill patients were released from state hospitals, relatively little in the way of community care was provided for them, and many former mental patients joined the ranks of the homeless wandering city streets.

Deinstitutionalization of the retarded, on the other hand, helped to create a more than $400-million-per-year private care industry in California funded by state and federal dollars--at least in part because parents and other advocates on behalf of the retarded are better organized and politically more effective than those of the mentally ill.

At the same time, a bewildering--and, according to critics, frequently unresponsive--bureaucratic web of state and quasi-official agencies evolved to develop and oversee programs and care for the retarded.

The new bureaucracy created its own jargon. The term deinstitutionalization was scrapped in favor of normalization and the term developmentally disabled was used to describe the patients--who were called clients. At the same time, the state hospitals that served these clients became developmental centers.

81,000 Californians

More than 90% of the 81,000 people in California categorized as developmentally disabled suffer from some degree of mental retardation, although the term also includes victims of cerebral palsy, epilepsy and autism.

The Department of Developmental Services is in charge of care for the developmentally disabled and contracts with 21 private nonprofit agencies known as regional centers located throughout the state. The regional centers, in turn, contract with private operators--both for-profit and nonprofit--to provide care and programs for the clients. The regional centers then place selected clients in these community facilities--ostensibly selecting the program best prepared to meet a client’s needs.

Not all the clients living in community care homes came from state hospitals. Many came from their own homes, where 57% of the state’s developmentally disabled people live.

Still, the number of developmentally disabled patients in state mental hospitals was reduced by half during the last 20 years, dropping from 13,355 in 1968 to 6,818 in 1987. More than 24,000 developmentally disabled people live in privately run facilities in California. More than 12,000 of these patients live in homes housing six or fewer residents. Another 6,700 live in larger homes, and about 4,500 others live in facilities that provide medical care, some of which are large institutional-style complexes resembling nursing homes.

The state pays private home operators from $572 to $3,493 per patient per month for housing and care, depending on the severity of the client’s disability and the services offered by the provider.

Cost Comparison

It is difficult to compare the cost of keeping patients in the seven developmental centers to the actual cost of running the community care system, including paying for the operation of regional centers, medical treatment and all the other costs connected with private care.

The cost of keeping a client in a developmental center, including everything from janitorial service to police to medical care, is $64,666 per year, according to state figures.

The cost of keeping a client who needs minimal to moderate care in a private facility is far less, but private intensive care can run as high as $41,916 per year, plus thousands of dollars more per year in medical costs, transportation, training programs and other expenses.

Studies seeking precise comparisons in cost have been inconclusive.

“Lots of honest-to-God research types have spent lots of years and lots of dollars doing this task of trying to find comparability (between state and private care costs), and most of the results have been lousy,” said Roberta Marlowe, assistant director of planning and development for the state Department of Developmental Services.

As the private care system grew, something not entirely expected happened:

The old state hospital wards for the retarded were largely transformed. Dormitories were broken up into smaller, more home-like living quarters. Staff members received better training and pay. Quality treatment programs became available. These new developmental centers have been accredited by the Accreditation Council on Services for People with Developmental Disabilities, a highly regarded private agency headquartered in Boston.

It’s Not Nirvana

Despite these improvements, the state hospitals have not achieved nirvana. Obstreperous patients frequently are tied to their beds, sedated or put in isolation rooms. The accreditation council survey noted, for example, that a patient at Lanterman Developmental Center in Pomona was “was in blindfold and restraint for a period of 90 minutes on Nov. 12, 1987.”

State health officials fined Lanterman recently for an incident in which a staff member slapped a patient. Earlier, health inspectors accused the facility of negligence in the death of a patient who choked on food and also cited the hospital for neglect of some patients’ hygiene, unclean conditions--including feces on a wall--and inadequate staff.

Even so, the 1,000-patient facility appeared clean and well-run, with patients receiving intensive training during a tour conducted for The Times.

Most observers of the developmental centers see no resemblance between current conditions and the old image of state-run “snake pits.” In fact, many parents of retarded patients in developmental centers are in an ongoing dispute with state officials who want to move their children into private care.

Twice each year, developmental center patients are evaluated by a team of professionals in the field of mental retardation to determine whether the patients might benefit from living in the community. The team examines such factors as how independently clients are able to function and whether they are self-abusive, assaultive or destructive. But in reality, there seems to be little difference between patients in state hospitals and many of those sent to private facilities.

Parents, Conservators

The Times observed, for example, profoundly retarded patients with grave physical impairments and serious behavioral problems in both state hospitals and private facilities.

The deciding difference between those transferred and those who stay in state hospitals is often whether the patient has parents or conservators who object to a transfer.

If a parent or conservator protests, the state usually backs off.

Gary D. Macomber, director of the state Department of Developmental Services, acknowledged, “We haven’t thus far, to the best of my knowledge, moved anyone out (of a state hospital) where there was a significant parental objection or conservator’s objection.”

Macomber also acknowledged that private facilities do not offer the same consistency in quality of care that is provided by the state developmental centers.

“Generally,” he said, “when we have a problem and we get a (licensing) citation in a developmental center, it’s a situation where our policies are in place, the person was trained appropriately, adequate staffing was there, but that human being (staff member) does something incredibly stupid.

“I’d like to get to that point in the community,” he added.

Even so, Macomber is a proponent of community care and pointed out that many parents find that their retarded children make significant progress in private facilities.

“We continue to believe that people ought to live in the least restrictive environment. Developmental centers play a role in getting people ready to live in the community,” he said.

Not ‘Final Placement’

“We don’t look at developmental center placement as a final placement for anyone. We ought to always look at the opportunities for community placement.”

That is exactly what frightens Matthew Guglielmo and many other parents of retarded children.

Guglielmo is president of the parents group at Fairview State Hospital in Orange County, where his daughter is a patient.

Guglielmo’s 26-year-old daughter is profoundly retarded, partially blind and deaf. She has been at the developmental center at Fairview for more than 12 years.

“It’s like a little Leisure World,” said Guglielmo. “Fairview to me is a delightful place today compared to what it used to be.”

His daughter was once in a small private facility, he said, where she did not receive proper care or nourishment.

But Guglielmo is 68 years old and is afraid that when he dies and is unable to protest, his daughter might again be sent to a private facility.

“I’d be afraid some do-gooder would come along and say she belongs in the community,” he said. “There are . . . good facilities out there, but they are few and far between.”

These community care facilities are regulated by a maze of state and private agencies that sometimes have parallel, overlapping and even conflicting concerns.

‘Rife With Advocates’

If patients require medical care or supervision, they may be placed in homes supervised by the state Department of Health Services, but most homes for the retarded come under the jurisdiction of the state Department of Social Services.

Each regional center also is responsible for the quality of care provided to clients within that center’s jurisdiction. In addition, there are agencies called area boards throughout the state that are made up of citizens who are supposed to oversee regional centers.

There is also Protection and Advocacy, the legal agency responsible for protecting clients’ rights. And there are public ombudsmen throughout the state who investigate complaints regarding care in various community facilities, including nursing homes and homes for the retarded.

“This system is rife with advocates,” said Macomber.

But critics say the system is so fragmented that the responsible agencies often don’t communicate and sometimes fail to cooperate with one another.

The state Department of Social Services has the authority to close facilities that it licenses, and each regional center has the authority to remove clients from homes within its area of responsibility.

These agencies often are at odds. Frequently, Social Service officials seek revocation of licenses of homes in which regional centers continue to place clients.

‘Different Perspective’

“We have a different perspective,” said Gail Sass, associate director of the Harbor Regional Center in Los Angeles County.

“They (Social Services) tend to think the most difficult clients we have don’t belong in community facilities,” she said. “I think we have a somewhat basic philosophical commitment that developmentally disabled clients have the right to live in the community and take risks rather than live in the state developmental centers.”

But Fred Miller, chief of community care licensing for the Department of Social Services, believes that regional centers should take more responsibility to see that homes for the retarded are adequately staffed and administered.

He also contends that regional center officials, who are responsible for making regular progress reports on individual clients, are in a better position to spot dangerous conditions in homes than licensing officials who might make only one visit a year.

“I think there has to be a shared responsibility,” he said. “And the placement agency is certainly there (in the homes) more often than community care licensing (officials).”

In addition, parents and other critics frequently complain that regional centers often are reluctant to remove clients from poorly run homes because facilities for difficult to handle clients are scarce and because regional centers are guided by the state mandate of keeping as many clients as possible in community care rather than in state hospitals.

‘A Vested Interest’

“The regional center does placement, monitoring and pays the bill,” said the head of a citizens’ area board, who asked not to be named, “so they definitely have a vested interest in keeping people in placements that may not be appropriate, because there may not be another (community facility available).”

But regional center officials argue that it is often preferable to work with a home operator to improve a facility than it is to remove clients.

The South Central Regional Center came under heavy criticism from the area board and the state Department of Developmental Services in 1987 for allegedly failing to monitor conditions in group homes where cases of severe neglect and at least one death occurred.

Under threat from the state of losing its contract to operate, the regional center subsequently reorganized its administration and board of directors.

“South Central has improved,” said Developmental Services chief Macomber, “but it still has a long way to go.” In the end, with all the advocates for the retarded, enforcement of standards in homes for the retarded usually comes down to licensing officials of the Department of Social Services.

Critics say the process of revoking a license is dangerously slow, and some licensing inspectors complain that the system of fining operators for violations is ineffective.

For example, under the state Department of Social Services enforcement system, home operators are allowed to simply correct dangerous conditions after being cited, without paying a fine.

Temporary Repairs

“You can cite over and over and over for the same violation,” said a license inspector who spoke on condition of anonymity. “As long as they (temporarily) fix the violation, they’ll never be fined. I could literally go to the same place once a month and cite the same violation.”

When fines are levied for uncorrected violations, the state must go to court to collect them if the operator doesn’t pay.

Miller, chief of Social Services licensing, argues that citations are meant to prod operators into correcting poor conditions and that for serious violations, such as physical or sexual abuse, the remedy should be closure of the facility, not fines.

Miller said that a facility in which abuse occurs could be closed within a day, under emergency procedures, but that usually much more time--frequently months--is needed to gather evidence for such an action, and that revocation of a home’s license can take years.

In addition, say state officials, the closure of allegedly dangerous homes and the relocation of residents is sometimes delayed because there is a shortage of facilities for the developmentally disabled and because sometimes parents resist the relocation of their children.

Many advocates for the retarded--such as the Greenline Parent Group at Camarillo State Hospital--believe that uniform quality of care for the developmentally disabled could be provided in community settings if the state operated the homes and provided trained, well-paid staff members.

‘System Is Unstable’

“The state has really abdicated its responsibility in not taking a larger hand in operating these community facilities,” argued John Chase, a member of Greenline.

“The community system is unstable,” he continued, “because they pay minimum wages and have no career ladder to offer people. They (staff members) just stay until something else comes along.”

Macomber says state-run community care facilities is an “option,” but he is cool to the idea.

Macomber is instead hoping to improve the quality of care in private facilities in the future by hiring the Accreditation Council on Services for People with Developmental Disabilities in a pilot project to see if the accreditation process used to improve state hospitals can be applied to private homes.

In the meantime he is banking on better quality of care through a project called the Alternative Residential Model, which is already in operation in selected regional center areas and is expected to be in effect statewide by January, 1991.

Basically ARM, as it is called, provides more money to home operators and demands standardized documentation of quality of care criteria, monitored by regional centers.

But there have been client deaths of a questionable nature in ARM homes.

And, not surprisingly, there is some skepticism in the field that Macomber’s plans will solve the community care problems.

In a letter this fall to the department, the Greenline Parent Group acknowledged that the ARM and accreditation projects are “a step in the right direction” but added that “the step is too short and too slow.”

“When the helpless suffer,” says the letter, “the able must not delay relief.”