For the nation's top civil rights attorney, the story of the death of 14-year-old Sarah Crider was haunting.
In October, Thomas Perez, assistant attorney general for civil rights at the U.S. Department of Justice, noted the girl's death in a state mental hospital moments before he announced the settlement of a sweeping lawsuit with the state of Georgia. State officials agreed to spend $77 million over the next two years to move several hundred, and possibly a few thousand, people from state hospitals, like the one Crider died in near Atlanta.
"This settlement is too little to late for her [family]," Perez said. "But it will help so many others like her living in institutions."
Crider, a seventh-grader, died in 2006 at Georgia Regional Hospital in Atlanta, a state hospital for people with mental illness, after she was prescribed multiple medications, many of which, as a side effect, caused constipation. Crider died from a severe intestinal blockage that went undiagnosed and untreated by the institution's doctors and staff.
"This was an absolutely tragic and preventable death," said Perez. "She didn't need to be in that institution. She could have thrived as an outpatient."
Crider was one of 115 state hospital patients who died under questionable circumstances, as documented in a series of stories by the Atlanta Journal-Constitution.
The Bush administration's Justice Department then put pressure on Georgia to improve conditions. And in the last days of the Bush administration, the Justice Department announced court settlements in Georgia and five other states to improve mental hospitals. The Justice Department intervened under a statute known as CRIPA — the Civil Rights of Institutionalized Persons Act — which gives the department authority to sue states to improve care in state hospitals, nursing homes, prisons and jails.
But advocates for people with disabilities said the settlements let the states off easy, since they did not force them to create alternatives to those state institutions. And, these groups noted, there was now civil rights law that required states to spend more money on alternatives. In 1999, the U.S. Supreme Court had ruled in Olmstead v. L.C. that it was a form of discrimination to put people in institutions if they could live, with some support, in their own homes. The justices noted that the Americans with Disabilities Act — a law commonly thought of as requiring wheelchair ramps and banning discrimination in hiring — also gave people with disabilities the right to live in the least segregated settings.
The court case involved two women who had lived in the same Georgia institution where Crider later died. But since the Supreme Court ruling, there had been little movement by federal agencies to get states — including Georgia — to live up to their obligations under the Olmstead ruling.
When Perez joined the Justice Department, he made enforcement of these Olmstead obligations a new priority for the Civil Rights Division. He calls it a "paradigm shift" for his division. In the past, "when the question was what do we do with people with disabilities who were warehoused in institutions, there was only one question that was asked: How can we insure that the institutions are safe?" Now, he says, the Justice Department is asking, "who is living in this facility who doesn't need to be there and could reside and indeed thrive in a community-based setting?"
As a result, the department in the past two years has filed briefs or joined lawsuits in some 20 states, Puerto Rico and the District of Columbia. Among them:
-- New York: A federal judge in March ruled that New York state must start moving more than 4,000 people with mental illness out of large "adult homes" and into their own apartments or small homes. Judge Nicholas Garaufis of Federal District Court in Brooklyn said New York must develop at least 1,500 units of housing — with supportive social services — each year over the next three years in New York City. The judge had ruled previously that the city's "adult homes" — which despite the name are institutions with 100 beds or more — violated the ADA by leaving residents segregated and isolated and less likely to find jobs or interact with the friends and people in the community. The Department of Justice filed briefs in support of the plaintiff, Disability Advocates, a nonprofit disability legal services agency that first filed the lawsuit in 2003.
-- Florida: The Justice Department filed a brief in support of a woman who had been living in her own home since an accident with a drunk driver left her a quadriplegic. Michele Haddad was on a waiting list for two years for state services and when her condition worsened. State officials said she could get care only if she first went into a nursing home for 60 days. The Justice Department argued, along with Haddad, that the state's waiting list violated the ADA and the Olmstead decision. In June, the week of the 11th anniversary of Olmstead, a federal judge in Jacksonville ruled in Haddad's favor.
-- Illinois: In September, a federal judge gave final approval to a settlement between disability and civil rights groups with the state of Illinois to start creating community-based homes for some 4,300 people with mental illnesses currently living in large nursing homes. The Justice Department filed a "statement of interest" in that lawsuit, Williams v. Quinn, and took similar action in two similar Illinois cases. In Ligas v. Maram, the department agreed with disability groups suing the state to create more community-based housing for people with intellectual disabilities who now live in large nursing homes. And in Hampe v. Hamos, young people with severe disabilities are suing not to get cut off, when they turn 21, from generous state funding for nurses and other care that allows them to live in their own homes, instead of in nursing homes or hospitals.