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Archived
News and Projects Disabled Centers' Future Threatened
Ricki turns the corner into the dayroom and edges forward, all hockey helmet and jut-kneed wobble. Several visitors smile their greetings to her, but she only has eyes for her mother, 77-year-old Betty Lewis.
Clucking softly, Ricki holds her mother with a subtly changing gaze that is her primary means of communication. It says she is happy, Betty Lewis explains,
here at the Agnews Developmental Center in San Jose, where her daughter has lived more than half her 46 years.
But time may be running short for Ricki and the 3,800 other residents of California's five developmental centers, the hospital-like institutions that house people with severe autism, cerebral palsy, mental retardation and other developmental disabilities.
A bill to be made public this week in the California legislature and a lawsuit filed last year in San Francisco federal court seek, in essence, to dismantle the developmental centers. For the first time, Ricki and other patients could be forced to find homes and medical services in the community --
a possibility that would not only profoundly alter their lives but re-ignite an intense ideological conflict between families of California's most vulnerable residents.
For the past 35 years, the state has steadily transferred the developmentally disabled from Agnews and other hospitals into community care facilities.
Supporters of the bill and the suit argue that the developmental centers are costly and inefficient, sapping scarce resources from community homes. A recent state-commissioned engineering study warns that the aging institutions need up to $1.5 billion in renovations. And advocates for community living insist that only in the real world can the developmentally disabled thrive.
But the families of center residents like Ricki Lewis contend the state institutions provide a level of care unavailable in a community system. And they fear their fragile relatives would never make it in a world outside the confines of the developmental centers.
Ricki, for example, suffers from a congenital problem that has made her mentally retarded. She chokes easily. She is oblivious to danger. She is susceptible to bouts of pneumonia. Several years ago she suffered seizures so severe that now she is only beginning to learn how to walk again.
"They do lots of things for her here (at Agnews) that my husband and I could never do at our age," says her mother, "and in the community, I don't think you would get that."
"Maybe Ricki would survive, I just don't know. But why destroy what is already good -- what we have at Agnews -- to make what is not good a little better?"
MOVES SEVERELY DISABLED On the surface, the bill and the lawsuit would merely fix an administrative anomaly: Developmental centers and community facilities are both run by the state Department of Developmental Services, yet they have separate budgets and receive disparate levels of funding.
Of the DDS's $2.6 billion budget, about $600 million supports the developmental centers and their 3,800 residents, while $2 billion finances services to the 170,000 developmentally disabled people living in the community.
The centers get an annual average of about $167,000 per patient directly from the state. Community facilities receive about $12,000 per client through nonprofit organizations holding state contracts. To some extent, though, the figures are misleading because many people who live in the community live in their family's homes at little public expense.
Sponsored by Assemblywoman Dion Aroner, D-Berkeley, the legislation would combine the two budgets and allocate more money to the community. And the lawsuit would require the state to pay community caregivers at least as much as it pays workers at developmental centers.
In effect, though, each measure would force the state to move even the most severely disabled residents into community homes and close the centers.
"We've decided the time has come to complete the transition from a system based on institutions to one based on the community," says Art Bolton, a consultant who came out of retirement to draft the bill.
When that transition began more than 35 years ago, Bolton was the sole staff member of a legislative committee charged with investigating abuses at state hospitals.
The hospitals were the only option for developmentally disabled residents who needed state aid, and conditions were horrific. Single wards housed more than 100 patients, beds were jammed against each other -- "overcrowded patients," says Bolton, "lay in their own feces."
Rather than accept then-Gov. Edmund G. Brown's proposal to build more hospitals, the committee recommended state aid to developmentally disabled people upon diagnosis, when it might be determined that hospitalization was unnecessary.
REJOINING SOCIETY In 1965, the legislature created two pilot organizations for providing community services in San Francisco and Los Angeles. Called regional centers, they served as nonprofit brokers between state coffers and local suppliers of housing, training and other services to the disabled.
The experiment proved "these folks could live in the community," says Bolton, and over the next decade Republican Assemblyman Frank Lanterman sponsored laws creating 21 regional centers and, in 1975, establishing the right of the developmentally disabled to receive state services in the "least restrictive" suitable setting.
State legislators, though, soon learned of serious problems in the new community care system. Reports and audits submitted to them in 1976 and 1988 described abuses of power, high turnover among social workers, poor accounting practices and chronic budget deficits at the regional centers.
But movement of the developmentally disabled from institutions to the community continued, and it accelerated dramatically after a group of parents, led by William Coffelt of Vallejo, sued the state in 1990.
The parents demanded new community-based homes and programs for their children, charging that the centers were offering poor care. In 1993, the state settled the suit by agreeing to move 2,000 people out of the institutions within five years, cutting the population by about one third and closing centers at Stockton and Camarillo.
For many former residents of the developmental centers, the moves were a resounding success.
"I can't imagine him living in any other situation," says Coffelt of his son Bill, a severely retarded 23-year-old who lives in his own home with a rotating staff of four. "Things go up and down for him, but I look at it as a civil rights issue: All people should be served in the community."
Julius Gaillard, executive director of the Golden Gate Regional Center in San Francisco, insists "99 percent of the people in group homes are happy, engaged and involved in their lives."
One of them is Anne Slater, 42, who holds a full-time job at a prestigious law firm downtown in San Francisco. She is up before 7 a.m. every weekday at the tidy Inner Sunset house she shares with four developmentally disabled roommates. She hops the N-Judah Muni car for a day of cleaning conference rooms, running the paper shredder and making coffee at work, then is back at home around 5 p.m. for some TV and cooking with a part-time caregiver.
Anne has Down's syndrome, but she's as busy and social as any bridge-club doyenne, and her father beams with pride in her life.
"She is a real success story," says Walter Slater.
SYSTEM SCARES FAMILIES Gaillard strives for as much with all his clients, but he knows life in his underfunded system can be precarious.
"We are," he says, "hanging on by our fingernails."
Several years ago, a research team based at the University of California in Riverside found that of nearly 1,900 people transferred to community homes from 1993 through 1995, 45 died -- a death rate more than 50 percent higher than the rate for similar clients who stayed in state hospitals.
In 1997, an investigation by The Chronicle discovered life-threatening problems and fiscal failures within the community care system. In a separate investigation, the U.S. Health Care Financing Administration found "severe deficiencies" both in state hospitals and in community programs, but focused on the community system's unsanitary and poorly supervised homes, ill-trained and ill-paid staff and extensive use of powerful sedatives to control the disabled.
Criticism grew so harsh that Dennis Amundson, the director of the state Department of Developmental Disabilities, was forced to resign in October 1997.
The community system's troubles frighten the families of developmental center residents, but Agnews and the other centers have their own problems.
Health violations cited by the U.S. Health Care Financing Administration in 1997 cost Agnews and the Sonoma Developmental Center millions of dollars in federal funding. While Agnews is back in compliance, Sonoma has yet to regain certification.
The centers are old -- more than 115 years in Agnews' case.
And in 1999, a report commissioned by the state Department of Developmental Services concluded that none of the five institutions could meet fire and safety codes. Estimates for the cost of repairs ranged up to $1.5 billion, although the department says merely bringing the centers into compliance would cost about $500,000, and "we are doing a lot of those things right now," says DDS Director Clifford Allenby.
It is costs like that -- and the state's apparent willingness to spend whatever is necessary to maintain the centers -- that rankle community care advocates.
"There's a lot of animosity," says Coffelt, "between us who support community services and the families of people in the developmental centers.
FUNDS TO STAY IN SYSTEM The Aroner bill would ensure that any savings realized from ending institutional care or from selling or leasing the centers' property would remain in the developmental services system, rather than go to the state's general fund, as the law now provides.
And while the bill would gradually "downsize" the centers, Aroner believes they will survive in some form for disabled people who are very old, have been convicted of crimes or have lived in the centers too long to move.
"Certainly there are families," says Aroner, "who can't imagine their family member living somewhere else, and it's really an issue of being respectful of those families."
A first draft of the bill is due this week and is scheduled for a hearing in April. But final votes may not occur until next year.
The class-action lawsuit, meanwhile, could dramatically accelerate the centers' demise. Current and potential residents of the institutions contend in the suit that the state has violated their rights by paying community caregivers so little that not enough facilities can stay in business to serve the plaintiffs. Although the suit doesn't seek to close the centers, it would force the developmental services system to shift almost all its resources into the community.
Competing with the bill and the lawsuit is a report due later this month from the Department of Developmental Services. The report was initially guided by principles calling for community homes of at most four people and no more money to rebuild the centers.
Allenby, though, says the report probably will not make recommendations but merely offer alternatives. He also believes the state developmental centers are not likely to be closed in the near future.
"If we can bring (the factions) together," he says, "we would have made a major step." And, he warns, until the department can ensure safe care in the community for residents, "my sense is . . . that the developmental centers are not going to look much different tomorrow than they look today."
That is as much hope as Betty Lewis and other supporters of the developmental centers can cling to. They still believe the most fragile people with disabilities can only be safe within the institutions.
"There's a lot of love and caring out there," says Lewis, gesturing toward the manicured grounds of Agnews. "I don't know where else Ricki would get that. "
E-mail Reynolds Holding at rholding@sfchronicle.com. Read More Archived News Stories AB896 General Human Interest Litigation State Budget
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