The large number of developmentally disabled adults living in state-run institutions puts Washington at risk of being sued by the federal government.

Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country.

Civil rights experts warn that this situation puts Washington in the cross hairs of the Department of Justice's Civil Rights Division, which since 2009 has made it a top priority to achieve desegregation of people with developmental disabilities.

Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities.

But in Washington, approximately 825 people with developmental disabilities -- people living with autism, Down syndrome, cerebral palsy and other disorders -- reside in one of the state's four large facilities: Fircrest in Shoreline, the Rainier School in Buckley, the Yakima Valley School in Selah, and Lakeland Village in Medical Lake.

"I think Washington state is very much vulnerable to a lawsuit. It's very much likely to be a target and it will have a tough time explaining why it continues to follow a policy that other states have abandoned successfully," said Sam Bagenstos of the University of Michigan Law School.

Bagenstos was the top Department of Justice attorney in the Civil Rights Division under the Obama administration when the government began an aggressive strategy to force states to integrate their citizens with developmental disabilities into the community.

"Many other states have either gotten rid of, or have significantly downsized their institutions. And Washington state remains kind of stubbornly, an outlier," said Bagenstos.

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Since 2009 the Justice Department has executed more than 40 legal actions in 25 states and in Puerto Rico in an effort to enforce a landmark 1999 civil rights decision handed down by the U.S. Supreme Court. In what is called the Olmstead decision, the court ruled that the unjustified institutional isolation of people with disabilities is a form of discrimination, which is illegal under Title II of the Americans with Disabilities Act (ADA).

"Unjustified placement or retention of persons in institutions severely limits their exposure to the outside community, and therefore constitutes a form of discrimination based on disability prohibited by Title II," The justices wrote in the decision. "[A] public entity (must) administer ... programs ... in the most integrated setting appropriate to the needs of qualified individuals with disabilities."

Title II of the ADA includes the "integration mandate," providing people with disabilities the right to be part of their communities.

"The spirit of Olmstead is the exact same spirit as Brown v. Board of Education -- separate is not equal," said David Carlson, director of legal advocacy for Disability Rights Washington, making a reference to the landmark school desegregation case handed down in 1954.

"It's the integration mandate, not the integration suggestion, the integration aspiration, but mandate. People need to be in as integrated a setting as they can be," said Carlson. "People, no matter what their disability, should have the right to live as varied and individualized a life as possible."

Allen Walker's Journey

In states with few or no institutions, the developmentally disabled who moved into community settings often live in what are known as supported living homes. These are small homes in regular neighborhoods with full-time staff who attend to clients' needs, including meal preparation, transportation, medical support and behavioral support.

Critics charge that these homes are often unsuitable for the most seriously disabled. But one Washington man's story shows that community placement can work for even the most extreme cases.

Allen Walker, 57, was once considered far too dangerous to live in the community. He has a severe form of autism that is characterized by sudden outbursts of violence. He spent 15 years at Fircrest, living there from the ages of 23 to 38.

Walker was segregated from society to protect himself and everyone around him. But the plan backfired as his behavior worsened.

While at Fircrest he spent most of his time punching, kicking, head butting and biting staff members and fellow residents. He also exhibited severe self-injurious behaviors, such as biting himself and butting his head against solid objects. Walker regularly destroyed property, punching and kicking holes in walls and throwing furniture through plate glass windows.

"He spent half or two-thirds of the day (at Fircrest) on the floor with one or two people sitting on him to hold him down," said George Walker, Allen's father. "He put me in the hospital once, so I certainly know how it goes."

Walker appeared to be destined to spend the rest of his life in an institution, until Jim Walsh got involved.

"Allen was presented to me (by the state) as the most difficult, violent person in the (institutions)," said Walsh, the owner of Ambitions, a supported living company based in Spokane.

"His behaviors were considered dangerous, and the institution utilized a Washington State Patrol restraint chair as a protective intervention," Walsh said of Walker. "His community placement not only required a lot of planning, but a sign off by the secretary of DSHS. It was a very high profile community placement that many predicted would fail," Walsh said.

It's been nearly 20 years since Walker moved out of Fircrest and into a home supported by Ambitions. His violent behaviors have substantially decreased, Ambitions staff say, and his parents and caregivers attribute much of the improvement to Allen's ability to have more choices and control over his life in the community -- choices that can be difficult to facilitate in a large institutional setting.

"Community services are intended to assist people in creating their own environments and their own rules. In other words, people get a chance to create their own life," said Walsh.

Walker's case is the type of integration Congress envisioned when it passed the ADA in 1990 and the Supreme Court upheld nine years later in the Olmstead decision. Always accompanied by a caregiver, some of his favorite activities include bowling at Kenmore Lanes, shopping at his local Safeway and Fred Meyer stores, going to the park, getting breakfast at the Kenmore McDonald's, swimming at a local pool, and shopping at thrift stores such as Goodwill.

"It's a wonderful change," said George Walker. "The idea got in his head that it was his house, which it was, his bedroom ... .Now he participates in what (he's) going to do, it may be a simple task or a little trip somewhere. ... And that's made the difference."

A matter of choice

Washington's institutions, known as Residential Habilitation Centers (RHCs), have strong support from some families whose loved ones reside at them. They say their relatives are not segregated from the community just because they live at an RHC, pointing to opportunities to take field trips, hold jobs on campus and participate in social events.

"I think it's just a crime that they want to close, downsize and move these people from what is their home. She has freedoms. She has a better social life than I do," said Julie Milstead, whose sister has lived at Fircrest for approximately 50 years.

RHC advocates are mostly made up of relatives who have loved ones living in the facilities and the state employee unions, which represent the 2,300 staff members who work at the state-run RHCs. They say the Department of Justice is off base in its interpretation of Olmstead.

"The DOJ is saying that OImstead says the institutions have to close. It actually says no such thing," said Jim Hardman, president of Friends of Fircrest. "Nothing in this decision, according to the court, says that the institutions must close or that people have to leave."

In the 1999 opinion, the Supreme Court justices said states are not mandated to close institutions. Instead, the justices said if three specific prongs are met a state may continue the institutionalization of a person with disabilities. Those conditions are:

  • A treatment team concludes the person needs care in an RHC.
  • The resident does not want to move into the community.
  • The state's resources would have to be fundamentally altered to care for the person in the community.

"We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings," wrote the justices. "Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it."

But the D.O.J.'s position in their legal proceedings has been that anyone should be able to be served in the community, so theoretically, there should not be a need for institutionalization.

"We know now that people with developmental disabilities, even very severe disabilities, don't need to be institutionalized," said Bagenstos.

"The law says we get to have a choice. And I applaud that choice and I think it's only people with nefarious motivations that would want to close down one of those choices," said state Sen. Pam Roach (R-Auburn), whose district includes the Rainier School

But civil rights attorneys disagree with this interpretation of the ruling.

"There is absolutely nothing in Olmstead that says institutions need to be made available to people," said Carlson. "Where the choice comes in is, if you have an institution and someone doesn't want to be in it, then you have to give them the choice to leave."

Risk of institutionalization

The Department of Justice has taken an aggressive approach to enforcing Olmstead in states where citizens with disabilities aren't necessarily living in institutions, but are at risk of ending up in that setting. Civil rights experts said this is the area where the state of Washington could be most vulnerable, as Washington lacks many community resources such as crisis stabilization programs, which could leave families no option but to put a relative in crisis in an institution. The state's institutions cannot reject people who are in crisis.

"...the ADA and the Olmstead decision extend to persons at serious risk of institutionalization or segregation and are not limited to individuals currently in institutional...settings," wrote the authors of a D.O.J. Olmstead enforcement statement issued by the department in 2011. "For example, a plaintiff could show sufficient risk of institutionalization to make out an Olmstead violation if a public entity's failure to provide community services...will likely cause a decline in health, safety, or welfare that would lead to the individual's eventual placement in an institution."

In Washington more than 100 people with extremely high needs currently are not receiving the necessary services in the community. Instead, their names are sitting on the state's waitlist for community services. In addition, according to DSHS, approximately 50 people currently residing in an RHC want to move out into the community or have shown interest in doing so, yet because of a lack of funding via the legislature, no community placements are available.

"I think the risk of (institutionalization) creates a risk of federal intervention or someone on the local level taking legal action. And people in institutions who want to leave and can't in a timely way also creates a risk," said Carlson. "If I were at the state level I'd be thinking, 'How do I deal with both of those issues?'"

Allen Walker still has tough days. But that's normal. The Olmstead decision reaffirmed the promise of the ADA -- that people, no matter their disability, should lead as normal a life as possible.

"Our team today continues to support Allen, rather than control him. This is the difference between community life and institutional life," said Walsh.

Read complete coverage: Last of the Institutions