U.S. May Pull Funding of Homes for Disabled

Citing “severe deficiencies” in medical care, the federal government threatened Thursday to shut off federal funding for a state-administered program serving 35,000 mentally retarded and developmentally disabled California residents.

In a bluntly worded decree, the Health Care Financing Administration said its investigators have determined that the “health and welfare” of participants in California’s Home and Community-Based Service program are clearly “at risk.”

The order bars new admissions to the program, which provides services through 21 regional centers that subcontract with group and nursing home operators and other providers. The program functions under a waiver granted by Washington aimed at helping move people out of state hospitals.

At least 20,000 of the people served by the program are in Southern California, including 3,205 in Orange County.

State officials must respond to the federal government’s findings and propose remedies within 30 days. The state has until June to overhaul the program to Washington’s satisfaction.

“Some enrollees’ health and ability to function are markedly declining, [and] mortality rates are of concern,” HCFA said in announcing the action. “Many centers operating under the waiver are unsanitary, lack appropriate supervision, fail to provide adequate nutrition and employ staff who lack skills and training necessary to serve this population.”

HCFA, a branch of the Department of Health and Human Services, says program providers are also over-medicating some participants and denying them their right to choose whether to live in community settings or in institutions.

Residents of the regional centers and group homes are considered severely impaired, and many require help with washing, eating and other daily activities. HCFA said they are not getting adequate assistance.

Although some residents should not be allowed to move about without supervision, federal officials said a number of people needing supervision were either missing or receiving little attention when investigators visited the centers.

“California has the largest waiver program,” said HCFA Administrator Nancy-Ann Min DeParle. “We would not have [issued Thursday’s decree] if we had not been very concerned about the seriousness of the situation.”

California officials have not yet scheduled a meeting with Min DeParle. Officials in Gov. Pete Wilson’s administration insisted that they already are taking corrective action in the $500-million-a-year program, and do not expect to lose the $250 million a year that the state receives from the federal agency.

“We won’t lose [the money],” said Tim Comstock, spokesman for the California Health and Welfare Agency, which oversees the care of the state’s developmentally disabled people. “We’ve already taken a number of corrective actions. We will fully comply with the recommendations. I have absolutely no fear that we’re going to lose any of this money. It’s not even thinkable.”

In Orange County, the program is administered by the Regional Center of Orange County, which coordinates services for about 10,000 people with developmental disabilities. Center spokeswoman Karen Buysman said officials have not yet received the report and could not comment.

California’s care of the severely mentally retarded has come under repeated fire as the state has tried to empty hospitals where many such people had received care for decades.

The state shuttered Camarillo State Hospital earlier this year, forcing the release of 450 mentally retarded people. Some were placed in other state hospitals; others went to group homes where care costs far less.

About 3,800 developmentally disabled people were housed in state hospitals this summer, down from 6,700 in 1991. The state planned to move 500 more people out by next summer. But the transfers were halted in the wake of reports of serious problems with the care of some who had been moved.

The state has made the moves partly out of a desire to save money, but also in response to a suit settled in 1993 by parents of some developmentally disabled people who demanded that their children be cared for in community settings.

Many people being moved, however, have no family members with legal standing to argue on their behalf, say critics of the state policy.

The state’s $1.6-billion-a-year Department of Developmental Services oversees the 21 regional centers.

Federal officials said no program participants will be turned out of their current residences without someplace to go. California has hundreds of group homes scattered across the state, ranging in size from four beds to as many as 60.

Indeed, federal officials said one reason for giving the state six months to improve the program is to ensure time for an orderly transition if enrollees need to be moved to new facilities.

“That’s a bombshell,” professor David Strauss, of UC Riverside, said of Thursday’s action.

Strauss, among the sharpest critics of the state’s policy, has been studying deaths of severely mentally retarded people who have been released from state hospitals and placed in group homes in California.

In one study, Strauss tracked 1,878 people released between 1993 and 1995 and found that 45 died. None was older than 60, and many were far younger. Most needed help with the most basic functions, such as eating and clothing themselves.

One man died from a ruptured bowel, caused by severe constipation. It was something medical staff could have detected before it turned serious, if there had been such employees at the facility, Strauss said. Others choked to death on food, and still others developed pneumonia after they aspirated food.

“They were all treatable if you’ve got good medical supervision,” said Strauss, who believes the 45 deaths were preventable.

Comstock, of the Health and Welfare Agency, said that although studies have shown higher death rates among patients moved from state hospitals, “there have been more studies showing that quality of life [for patients housed] in the community is much better.”

In Orange County, attorney Francis Hardiman of Santa Ana is suing the state over transfers from Fairview Developmental Center, a state hospital in Costa Mesa. His client, Dr. William Cable, was chief of the medical staff at the facility. Cable alleges that he was demoted and then suspended after he objected to the transfers to inadequate facilities.

Lauding the federal action, Hardiman said he felt that, with a few exceptions, “We had no real indication that there was anybody doing anything about the problem. . . . I’m glad to see the federal government is living up to its responsibilities.”

The California program has been in place since 1982. It is the only one in the nation in which problems have appeared so egregious that the government has threatened to terminate the waiver and funding. Most states have community-based programs for at least a portion of their developmentally disabled populations, and generally the programs have worked well, HCFA officials said.

HCFA’s order is based on a six-month investigation in which activities at five centers around the state were reviewed in detail.

The problems came to HCFA’s attention after extensive coverage by the San Francisco Chronicle and other news organizations, as well as complaints from patients and their families. When the state’s waiver expired in September, state officials applied for a renewal and sought approval to expand the program to 47,000 people.

HCFA said its review also found that the state was caring for mentally ill clients, even though the program does not have services for the mentally ill.

In its directive, HCFA has ordered the state to:

* Transfer responsibility for the entire program to Department of Health Services from the program previously administered by the Department of Developmental Services.

* Require the Department of Health Services to rigorously oversee the quality of care provided by the centers and to ensure that participants receive safe and sanitary services.

* Give clients a choice between community-based services and institutional care.

* Establish a grievance process with independent review and privacy.

Rubin reported from Washington and Morain from Sacramento. Times staff writer Marcida Dodson contributed to this report.