How ADA compliance policy is forcing closure.
Story David Bolling
Photos David Bolling and Steven Krause
On August 20, during what some construed as a historic convergence of state officials gathered at Altimira Middle School to address the future of the Sonoma Developmental Center, the Secretary of the California Health and Human Services Agency, Diana Dooley, made some powerful and promising statements about the fate of the facility.
Dooley told a throng of well over 100 citizens that she had three priorities. “My first focus is on the people who live there,” she said of SDC’s resident population.
“My second focus is the staff,” she said, referring to the roughly 1,300 people employed at SDC. And her third focus, she concluded, is the land, which she described as “a treasure to the community and to the environment.”
Referring to a state decision to close the facility by 2018, Dooley insisted, “This is not a decision that has been made lightly. This is a decision that has been in the making for 40 years.”
Dooley, who revealed she has a family member utilizing the resources of the Department of Developmental Services, which she oversees, added, “I have long cared for this program.”
But in almost the same breath, Dooley made reference to the “Olmstead decision” as the key driver of state policy to close down what will be the last large “congregate living” institution for developmentally disabled citizens in California.
“Fifty percent of funding (for developmentally disabled services),” she said, “comes from the federal government.” And that financial aid is now guided by a 1999 decision of the U.S. Supreme Court that has interpreted the Americans with Disabilities Act as prohibiting any form of discrimination that denies disabled people equal access to community resources.
The Olmstead decision was named for Dooley’s counterpart in the State of Georgia, Tommy Olmstead, who was sued by two disabled women demanding community placement. Olmstead was the commissioner of the Georgia Department of Human Resources, and the decision bearing his name has become a hammer in the hands of disability rights activists and now virtually dictates federal spending guidelines.
Dooley was wise to insert the Olmstead decision into the discussion about SDC’s future, but in the eyes of some critics of the state’s closure decision, the SDC debate has not adequately addressed the perceived flaws in Olmstead, or potential strategies for modifying federal response to the decision.
Legal scholars have arrived at a variety of opinions on what Olmstead does and doesn’t say, but a neutral reading of the decision does not appear to dictate decisions forcing the withdrawal of federal funding from an institution like SDC.
Olmstead Rights, a project of the Atlanta Legal Aid that brought the Olmstead case to the court, has summarized the case as follows:
“The Olmstead lawsuit started with two women from Georgia named Lois Curtis and Elaine Wilson who both had diagnoses of mental health conditions and intellectual disabilities. Lois and Elaine found themselves going in and out of the state’s mental health hospitals dozens of times. After each stay in the hospital, they would go back home; but then, because they did not have help at home, they would start to struggle again and would have to go back to the hospital to get help again. Lois and Elaine asked the state of Georgia to help them get treatment in the community so that they would not have to go live at the state mental hospital off and on. The doctors who treated Lois and Elaine agreed that they were capable of living in the community with appropriate supports. However, Lois and Elaine ended up waiting for years for their community-based supports to be set up.
“The Supreme Court agreed with Lois and Elaine. The Court found that under the Americans with Disabilities Act, or “the ADA,” it is against the law for the state to discriminate against a person based on his or her disability. The Court said that the state discriminated against Lois and Elaine by requiring them to live in a mental health hospital. It should have instead provided services for them in the community. By confining them in the hospital, the state was segregating them by requiring them to live with others with disabilities. The Court said that people with disabilities like Lois and Elaine have the right to receive the treatment they needed in an integrated setting if that is what they want, if their doctors agree, and if it doesn’t fundamentally change how the state provides services to people with disabilities.”
While that case description does not seem applicable to the situation at SDC, where an overwhelming number of conservators, family members and guardians of SDC residents have adamantly insisted that the residents want and need to remain there, and not be scattered into community-based group homes, federal policy, driven by the Justice Department has actively accelerated application of the Olmstead decision.
In 2009, the Civil Rights Division of the Department of Justice launched an aggressive campaign to enforce Olmstead, and that year President Obama issued a proclamation announcing the “Year of Community Living,” requesting more aggressive enforcement efforts.
That initiative resulted in a coordinated outreach to state and local governments, disabilities rights groups and other outreach organizations to structure a nationwide program for enforcing what was interpreted as the Olmstead mandate.
As admirable as is the effort to enforce equal access policy on jurisdictions responsible for the developmentally disabled, numerous critics of this federal policy as it is being applied to SDC argue it is tragically misplaced.
As long as the Centers for Medicare and Medicaid Services withhold funding for “congregant living” facilities, “I don’t know how we can make headway against the decision to close SDC,” said 1st District Supervisor Susan Gorin. “The Olmstead decision just gets in the way.”
Evidence has emerged that one consequence of the redistribution of residents from large institutions to group homes is that oversight of the health and safety of those residents frequently declines when adequate professional staffing is not available.
Ironically, the state of Georgia not only produced Olmstead, it is also the site of recent revelations that numerous people moved out of large institutions into community homes have died or suffered from neglect and abuse.
According to the Atlanta Journal-Constitution, after 428 Georgia residents were “deinstitutionalized,” about three-fourths of the facilities into which they were moved had been cited for violating standards of care, or were investigated over patient deaths or abuse and neglect reports since 2010. Officials documented 76 reports of physical or psychological abuse, 48 of neglect, and 60 accidental injuries. In 93 other cases, group home residents allegedly assaulted one another, their caregivers or others. Forty people died after moving into group homes. At least 30 of those deaths had not been expected.
In a Journal-Constitution report from June 22, 2014, the newspaper found many people transitioned into small group homes “appear to be no better off—or, in some cases, even worse off—now than when they lived in the state’s dangerous and dysfunctional psychiatric facilities.
“Few lead meaningful lives in their new communities, according to a court-appointed consultant. They have little say over where they live, or with whom. Medical care can be sketchy. Often, group homes and adult foster homes don’t hire enough caregivers or don’t adequately train the ones they employ. Residents are dispersed across the state, sometimes far from family members or others who might keep watch over their treatment. If disabled people were simply warehoused in state hospitals, as their advocates often asserted, now it is as if they have been placed in small, isolated storage units that easily elude attention.”
That report mirrors the concerns of some SDC parents who say when their children have been transferred to group homes the quality of care declines, medications are not appropriately monitored and administered, access to the outdoors is sometimes limited and client well-being and happiness generally declines.
Kathleen Miller is one of those parents. Her son Dan has been at SDC for some 15 years, after being rejected by a succession of community placements. He has thrived in the center’s bucolic environment, where he can take long walks with his mother to exercise, and exorcise the anxieties in his head. Their walks, she says (see Vox Pop on page 94) are therapeutic and have dramatically improved Dan’s physical and mental health.
Secretary Dooley has been widely lauded as a competent and compassionate administrator. Supervisor Gorin describes her as one of the finest administrators in Sacramento. But critics insist that whatever Dooley’s sincere concerns may be for the interests of SDC residents, the legislative deadline to clear SDC from state books by 2018 has arbitrarily and illogically forced many of those residents toward a “final solution” for which alternatives will cease to exist and in which the level of care cannot match that already found at SDC.
The Olmstead decision has doubtless improved the lives of countless disabled Americans. But it is not a universal panacea for addressing the rights and the needs of all disabled people. A fair and wise outcome for the Sonoma Developmental Center would include critical analysis of the potential misapplication of Olmstead, and thoughtful consideration for the creation of a downsized facility on the existing campus footprint, where existing and future residents could enjoy the therapeutic benefits of the Sonoma Valley’s natural beauty.