People living with developmental disabilities -- conditions like autism and cerebral palsy -- often rely on experts, including people employed by the state of Washington, to decide what care and services they need.
But when it comes to Washington's legislature, the KING 5 investigators found our legislators routinely ignore the advice of experts hired to weigh in on the best approach to caring for hundreds of developmentally disabled people living in state-run institutions.
Four decades of scientific research conducted across the country and here in Washington conclude people with developmental disabilities live improved lives when they move out of such facilities.
Washington, however, still has four large facilities open, well above the national average. Only 13 states operate more institutions for the developmentally disabled.
"We're very behind the times (on this issue)," said Sue Elliott, executive director of the ARC of Washington, which advocates for the human rights of people with developmental disabilities.
The institutions are called Residential Habilitation Centers (RHCs) and are operated by the Department of Social and Health Services. They feature sprawling campuses and many therapeutic programs led by trained and caring staff, which include opportunities for the residents to work on the campuses, participate in art programs, and attend social events.
But the national trend, based on science and legal interpretations of civil rights laws, is to close institutions and integrate people with disabilities into regular communities.
That's what Dianne Laurine did in 1990. She has cerebral palsy and moved out of a private institution in Seattle after living there for 12 years. She struggled with the rigid schedule and lack of privacy.
"(The institution was) a hell, a hell with no privacy," said Dianne. "(The day I moved out was) the happiest day of my life. The happiest day of my life. I was free. I was free."
Dianne requires help with all of her basic needs, which she gets from around-the-clock staff in a shared home in Seattle run by Provail - an agency specializing in this kind of help. She says little things make her life better now, such as owning a dog.
"Ella's a great dog ... she always protects me," said Dianne. "I love her."
Having a pet dog is the type of lifestyle choice that's not allowed when in the state's institutions.
"In almost every conceivable way, their lives get better when they move to the community," said Charlie Lakin of Minneapolis,one of the nation's top researchers in this field. He's worked for both the Clinton and Obama administrations and is a retired professor from the University of Minnesota.
"To see them as sort of a different species who would want to live their life in a way that's different than the rest of us want to live our lives is unfortunate and frankly discriminatory," said Lakin.
Lakin analyzed research conducted between 1977 and 2010. Thirty-six studies fit the criteria for his analysis, which involved comparing similar groups of people who moved from institutions with people who stayed behind. Most were commissioned by state agencies specifically to study the outcomes of moving their citizens with developmental disabilities out of institutions to community settings. No studies from Washington state were included in his policy research brief.
Lakin found 85 percent of the research papers showed people made dramatic improvements in the development of skills of daily living (self-care, domestic and social skills) when they moved out of institutions – regardless of their disability or level of need. Findings this consistent in the area of social research are rare.
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"The research is overwhelming," said Lakin. "I don't think there are many areas of social research in which the evidence is so clear that one form of care, institutionalization, is as detrimental to people when compared to another form of care – that is living in the community."
Only one area of research was inconclusive -- assessing the outcomes for people presenting with challenging behaviors, such as aggression. The studies showed little difference between people who stayed in institutions and those who moved, although "aggression toward other people and property destruction was significantly better for (people who moved into the community) in both studies making the comparison," wrote Lakin in a 2011 policy research brief.
Based on the early research conducted on this issue, the national ARC changed its policy on institutionalization in the 1970s. Since then the group has advocated to stop the segregation of people with developmental disabilities in favor of integrating them into regular communities with appropriate support. Many institutions have closed across the country in the last 40 years, including two in Washington state.
The ARC of Washington said there is still work to be done.
"We've been advocating to close institutions for 40 years and we still don't have it done. So we're 40 years behind," said Elliott.
Many of the studies conducted in Washington state were commissioned by the legislature's Joint Legislative Audit and Review Committee (JLARC). JLARC's mission is to "make state government operations more effective, efficient, and accountable" by conducting audits and studies. The KING 5 Investigators examined seven JLARC-commissioned studies from 1991 through 2013. Combined, they cost the state well over $1 million.
The studies came to similar conclusions through the years. Some of the findings from a 1992 study were that people made "documented dramatic gains" in areas such as "self-control" and learning "new skills" as well as having a "better quality of life" when they moved out of an institution. The 1992 study cost $124,000.
A 2009 study that cost the state $462,991 recommended closing all the RHCs except the nursing home areas on or before 2018. "This level of care can be provided more effectively in a combination of private and state-operated community supported living settings," wrote the authors.
A 2013 audit, executed under a $498,500 contract with consultants, advised "reducing the number of RHCs...and expanding...services in the community." The researchers found that people being successfully supported in the community had similar needs as people still living in the state institutions – bucking a perception that people in the institutions are so fragile they couldn't survive or be appropriately supported outside of a large facility.
All this work and money spent, yet the legislature has not followed the advice of its own experts.
"The legislature appropriates money for the studies and then they sit on a shelf," said Elliott. "All the studies say the same thing – that we should move people to the community and not have our institutions. So that's presented to the legislature and (then) ignored."
Critics say the research is mothballed because of politics.
State Sen. Maralyn Chase (D-Shoreline) said the research can't be relied upon because the scientists conducting the studies have a political agenda to close institutions.
"If they're going to pretend to be science, then let's have science," said Chase. "There's not enough information in these studies to compare apples to apples and to justify closing the RHCs. There just isn't. I'm probably the only one in the legislature that reads this stuff."
Chase's views are shared by experts who have worked with developmentally disabled people for years.
"The results of the studies are determined at the time the folks doing the study are selected," said Jim Hardman, president of the RHC advocacy group Friends of Fircrest. "Their object in doing the study is to provide justification for closure."
Advocates of keeping the RHCs open say developmentally disabled people living in the community do not have the sort of high-level needs as those still living in institutions.
"If we put these very fragile people out into the community, and they are people, most of them will die fairly quickly," Chase said, dismissing the decades of research that found otherwise.
Those advocating for the eventual closure of the state's institutions say it is jobs – not best practice – that sway legislators to ignore the science.
Washington's four institutions employ 2,300 state workers, and their union representatives routinely lobby lawmakers in public hearings and work sessions to keep the institutions open.
"(It's) jobs. They're doing what a union has to do. I don't fault them. They're doing what labor is required to do, protecting the interests of their employees," said former state Sen. Adam Kline (D-Seattle).
"My heart is with those state employees," Kline said. "I'm not out to deprive them of their jobs, but there is a long standing recognition of the right of every individual who has not committed a crime to not be in an institution. (They deserve) to be in the least restrictive (setting) - the most free, the most unstructured, and the most available to the community."
Union leaders said their members' priority is providing quality care for the institutions' residents.
"The myth is we only care about jobs. That is absolutely a myth," said Greg Devereux, the executive director of the Washington Federation of State Employees.
Devereux said the union advocates to keep the facilities open to make sure there's the quality of care available to this population that currently is only available in the RHCs.
"Absolutely we fight for jobs, but our members care about the work they do, tremendously," said Devereux. "If you poll our membership, what they care about most is the mission of the agency they work in. They care about that before the union or anything else. They care about the work."
Legislators who fight to keep the institutions open say the clients and their families are at the top of their priority list, not a stack of studies or politics.
"The only thing I care about and what I'm focused on is the actual individual person who needs our help," said Frank Chopp, the Seattle Democrat and Speaker of Washington's House of Representatives. "We want to make sure the quality of care is good for the people that are directly affected."
Dianne Laurine had a message for politicians who discount the science and doubt people of all level of disability can succeed in the community:
"They can," said Dianne. "They'll get more. They'll get more when they move out."
-- Follow Susannah Frame on Twitter:@SFrameK5.