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Wash. decades behind in serving developmentally disabled

Part 1 of Susannah Frame's series on what critics say is an outdated approach to caring for a vulnerable population.
Mike Raymond

When it comes to providing for citizens most in need of assistance, Washington's reputation is of a progressive, cutting edge state committed to delivering the best possible care and support.

But experts across the country say Washington is decades behind the times when it comes to its treatment of some of its most vulnerable citizens -- people with developmental disabilities.

In Washington, more people with these disabilities -- conditions like autism, cerebral palsy, and Down syndrome -- are institutionalized compared with most of the rest of the country. That bucks a decades-long trend to stop the segregation of people with developmental and intellectual disabilities.

KING 5 is not reporting on institutions or hospitals dedicated to treating people with mental illnesses, such as Western State Hospital in Lakewood or Fairfax Hospital in Kirkland. This report and those to follow in the series focus on people with developmental disabilities.

The campaign to integrate these people into regular society is based on years of scientific research. It's also driven by an emphasis on civil rights. According to the U.S. Department of Justice, living in an institution is being segregated from society and that segregation is equal to discrimination. Discrimination is illegal based on Title II of the Americans with Disabilities Act.

Some change has happened in Washington. The state closed two institutions and moved thousands of developmentally disabled people into the community over the years. But four large facilities remain open -- Fircrest in Shoreline, the Rainier School in Buckley, the Yakima Valley School in Selah and Lakeland Village in Spokane. Approximately 800 people reside in them. Only a handful of states operate more than four institutions, including Texas, New York, Arkansas, Mississippi and Illinois.

"Washington state is always right up there (on lists of states with the best) quality of life. Honestly, I'm stunned. I had no idea. ... It's almost like you're stuck in a time warp," said Dan Reed, who's worked on disability issues in Minnesota for over two decades, including as a state policy leader on the Governor's Council on Developmental Disabilities. Minnesota closed all if its institutions more than 15 years ago.

"Really appalling, and you're missing out," said Reed. "This shouldn't be a dreaded thing, this is a cool thing. It's like liberating a whole society. It's like, 'Wow, these people are now part of us.'"

In all, 16 states have closed all of their large facilities for the developmentally disabled, including Oregon, Hawaii, Alaska, New Mexico and Oklahoma. These states are serving this entire population in community settings. Many live in homes with two to three residents and full time staff to meet their needs. Several agencies in the Northwest offer an array of support services, such as assisting with medical needs, transportation and job coaching.

'They treated us just like we were a bunch of animals'

The history of the treatment of people with developmental disabilities in the United States is a dark and shameful one. From colonial times through the early 1970s, this population was systematically warehoused and treated as less than human. The theory was that the developmentally disabled needed to be protected from society and society needed to be protected from them.

Mike Raymond, who has an intellectual disability and is blind in one eye, spent his entire childhood at the Rainier School in Buckley, which opened in 1939. At its peak, 1,900 people lived at Rainier. Today, it remains open with approximately 320 residents.

In 1950, at the age of three, Raymond's doctor advised his mother to put her son in an institution and not to look back -- a common piece of advice from physicians at the time. Raymond hated his years at Rainier.

"It felt like a prison. Back then it was like a prison back then. It felt like it. It did," he said.

Raymond said he remembers staff yelling at the kids and the humiliation of being herded into showers.

"They used to hose us down and they used to take a wet towel and choke people around their neck," he said.

Forty-five years after leaving Rainier, scars are still visible on Raymond's wrist and arms from beatings. That was the punishment meted out when he tried to run away or when he sneaked out to see his girlfriend, a fellow Rainier resident named Diane.

"When they used to make us put our hands up on the wire, they used to hit us with belts, and that was pretty, pretty bad," said Raymond.

Raymond's life became even bleaker at 16, when the staff gave him horrible news.

"They told me that my mom was dead," he said. "That was awful lonely, awful lonely."

Washington's four institutions have been completely revamped since Raymond's childhood. Large dormitories were replaced by cottages housing eight to 16 residents. Isolation and degradation were replaced by caring staff, opportunities to work, learn new skills, receive therapies and attend social events.

"I think it's doing a lot of changing," said Raymond on a recent visit to Rainier School. "It's a lot better than it was back then. That was a long time ago."

But decades of scientific research shows this model, however improved, is behind the times, too restrictive, limiting people from living their best life. Dozens of studies conducted over the last 30 years find no matter what the person's disability or level of need - they do better living beyond the walls of an institution.

"The research is very clear that in terms of development, development of the skills of daily living…self-care, domestic skills and social skills, that institutions cannot compete with (living in the community with supports), said Dr. Charlie Lakin, a retired professor from the University of Minnesota and one of the country's leading researchers in the field. He's served under both the Clinton and Obama administrations working on issues related to developmental disabilities.

Lakin has analyzed three decades of research showing people's lives improve dramatically when they move out of institutions.

"In almost every conceivable way, their lives get better when they move to the community," he said. "The research is overwhelming."

One area of research came up with inconclusive evidence - people presenting with challenging behaviors, such as hurting other people or injuring themselves. In this population the studies showed little consistency in change between people who stayed in institutions and those who moved out into the community.

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'We should be proud of our institutions'

The institutions have staunch defenders.

The four institutions "are a safety net," said Jim Hardman, who has worked as an attorney and court appointed guardian for people with developmental disabilities in Washington for more than 30 years. He is also the president of an advocacy group entitled Friends of Fircrest.

"Washington should be recognized as a leader and as a bright light...we should be proud of our institutions," said Hardman.

Hardman said his clients have so many needs that these facilities are the best and safest place for them.

"It's important for my clients to be very near doctors, nurses, psychologists, and professional staff who are familiar with them," said Hardman.

Hardman and other advocates, including the parents and guardians of many of the residents living in institutions, say the science cited by Lakin and Reed is flawed and biased.

"On a campus, they're protected. They can walk around their neighborhood. They're not going to get hit by a car. They're not going to be mugged," Hardman said. "If they get into difficulty, there are several hundred eyes to step in if they need help. That doesn't happen in the neighborhoods outside of the facilities."

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A life outside the institution

At the age of 21, Mike Raymond's sister helped him to get out of Rainier. Once out, he found new freedom, more independence, and an incredible piece of information.

"Since I got out of the institution I feel like a whole new people," he said.

Remember how the staff told him his mother had passed away? That was a lie. She was very much alive and Raymond tracked her down in Aberdeen. He has no idea why the staff said she was dead.

"It was awful happy (to find her)," said Raymond. "I told Mom that, 'I'm glad to see you,' and she said, 'I'm glad to see you too.'"

Mike is one of about 3,000 who've left Washington's institutions since the late 1960s. Recently, he came back to Rainier with KING 5 for the first time since leaving it behind four decades ago.

"It's very hard to believe that I used to live here," said Raymond. "It's sad, yes. It makes me feel like they're watching what I'm doing like they did before."

Raymond showed us his former dorm -- Alder Hall -- where he used to live and eat with boys of a similar age. The state closed the building in 1982, but it continues to sit on Rainier property because there isn't the funding to demolish it. It is dilapidated and eerie: peeling paint on the walls, tiles that have fallen from the ceilings, and many reminders of its ugly past: wheelchairs and gurneys with restraint straps and isolation rooms used for punishment.

"They twisted our arms and pushed us into isolation when we were bad and stuff," said Raymond.

Mike Raymond has come a long way. With help, he lives in his own home in Tacoma. He's worked at Goodwill and now with a job coach he teaches others with disabilities how to advocate for themselves.

And there's more. That childhood girlfriend from Rainier named Diane is now his wife. They've been married for 45 years. They had a daughter who now teaches special education. And they have a new grandson – joys in life that never would have happened behind the walls of an institution.

"I would like to close them down, as soon as they close them down we'll be a lot better," Raymond said. "I'm going to be fighting for this as long as I live. I'm not going to give up for anybody."

The four institutions are owned by the state of Washington and are staffed by state employees. The Department of Social and Health Services is charged with running them, under the direction of the legislature.

-- Follow Susannah Frame on Twitter: @SFrameK5.