Closing institutions would be ‘devastating,' say advocates

A small, vocal minority is fighting to keep the facilities for people with developmental disabilities open in Washington state.

There's a movement across the country to stop institutionalizing people with developmental disabilities.  According to academic and legal experts, the current best practice is to care for this population in regular neighborhoods with proper support. The theory is that people with disabilities should be integrated into the general population where they can experience and be part of their communities.

But a small, vocal minority is fighting to keep the four facilities in Washington state open. Advocates for the institutions include the unions representing state workers who staff them, and relatives of those living in them.  The family members said taking their loved one's home away from them would be cruel and dangerous.

"I would feel very uncomfortable if she were in the community at large because she's not traffic safe," said Candy Braley, whose sister lives at Fircrest in Shoreline.

"I feel very comfortable that she is in a very save environment. The staff knows her and understands her and she can wander the campus," Braley said.

Besides Fircrest, there are three other remaining institutions for people with developmental and intellectual disabilities in Washington: the Rainier School in Buckley, the Yakima Valley School in Selah, and Lakeland Village in Medical Lake near Spokane.

Together, approximately 800 people reside in the facilities. Only a handful of other states have more people living in institutions than Washington. The Department of Social and Health Services (DSHS) runs the facilities and refers to them as Residential Habilitation Centers (RHCs.)

A group of relatives and advocates came to the KING 5 studios in October to share their concerns about the national trend to downsize or close RHCs.

They said they have peace of mind knowing their loved ones get all of their needs met by trained staff, on one campus.

Saskia Davis came to represent her sister, Casey, who lives at Fircrest. Casey has been diagnosed with intellectual disability, epilepsy, cerebral palsy and bipolar disorder.

"She needs a lot of support from a lot of different therapies and they're all there and because they're all convenient, she can have a life," said Davis.

The group's main message: The RHC's provide for the health and safety of their relatives far better than agencies who support those with disabilities in the community.  The advocates said their loved ones are so medically fragile and vulnerable that they need the protection only an RHC can offer them.

"I do know there is a segment of the population that really cannot survive out in the community," said Terri Anderson.

Anderson's son Matthew lives at Fircrest. He is diagnosed with autism, is non-verbal and presents challenging behaviors.

"Primarily, it's a health and safety issue," said Anderson.

Another parent came to represent her daughter who has four life-threatening health conditions.

"My daughter Amy has a rare genetic syndrome," said Liz Patterson. "She's 25 and she's under 50 pounds….I called 9-1-1 thirty-two times before she turned 10 years old."

Patterson said before gaining a spot at Fircrest at the age of 19, her daughter's health was in constant jeopardy. There were frequent visits to emergency rooms.

"She's happy, healthy and safe (at Fircrest). It's working out really well," said Patterson.

Betty Cantrell spoke on behalf of her cousin, Patricia, who also lives at Fircrest.  Cantrell recalled Patricia's experience living in the community in a group home in the early 1980s.

"She was in the community and it was a very tragic experience," said Cantrell. "She walked from the group home in Ballard to the Northwest Center in pajama bottoms only….she was on First Avenue for two weeks at night in shelters. I tried to get help, I could get no help."

Afterward, Patricia went to Fircrest. That was 35 years ago. Patricia is currently 65 years old.

"She has freedom and she's safe. And she wasn't when she was in the community," said Cantrell.

Institutions under fire

But the institutions have been under a siege of sorts since the 1990s. The U.S. Department of Justice considers them a form of segregation. Across the country the D.O.J. is taking action against states to phase them out.

In addition, decades of science shows most people with developmental disabilities fare better when they move into regular neighborhoods, with the right supports around them.

Margaret-Lee Thompson of Redmond is on the board of directors for the ARC of the United States. The ARC advocates for the human rights of people with developmental and intellectual disabilities. Thompson has worked for 40 years to make RHCs a thing of the past.

"Really, the academic argument has been over for 20 to 25 years. (Scientists have shown) that large (institutional) care is not the best place for people to live.  They should be in ordinary places in their communities, being part of their communities," said Thompson. "The far majority of the time they have better lives when they move to the community."

RHC advocates do not believe the science or the D.O.J's interpretation of the law concerning institutions.

Rhonda Meyers said the Rainier School in Buckley has been a life saver for her daughter, Vivian, a 19-year-old with a diagnosis of severe autism. Vivian cannot speak and had many challenging behaviors while the family did their best to care for her at home.

"She's never had a friend in her entire life. She stayed in the house, she wouldn't even go in the backyard," said Meyers.

After a year-and-a-half at Rainier, the family said Vivian has gained many skills and made tremendous gains in all areas.

"It's been a wonderful experience for her. She came in at the very lowest she'd ever been and she's doing the best she's ever (done)," said Meyers. "This is the world I've wanted for her all these years."

But Vivian's time at Rainier may be coming to an end. State law prohibits people under the age of 21 to stay at an RHC long-term. For younger people, the RHCs are supposed to be a resource for crisis stabilization only. Rhonda Meyers said she is desperate to find a way to keep Vivian where she is.

"If there is anybody, anybody who can help me keep my daughter at Rainier and fight (DSHS) I need that help," said Meyers. "She has to be kept safe from herself and she has to be kept safe from everyone else."

The state of Washington is considered behind the times on this issue. Seven states are close to shuttering their facilities, including Idaho, which only has 18 residents living in an institution.

Fifteen other states and the District of Columbia have already closed every one of their institutions. Those states include Alaska, Hawaii, Montana and Oregon. Government leaders, lawmakers, union members and professionals in those states have found a way to serve all of their citizens with developmental disabilities in community settings, including the medically fragile and the behaviorally challenged.

The RHC advocates in Washington said they'll fight against this national trend as long as it takes.  Many said an RHC is the only home their loved ones have ever really known. And to remove them would be not only risky, but cruel.

"She has a purpose there. She has chores and it's her home. It's her life," said Julie Milstead. Her sister, Cheri Troeppl, has lived at Fircrest for 50 years.

"She's wheelchair bound, paralyzed on one side of her body, she's non-verbal, but she's very aware. She knows exactly what's going on, (but) she's trapped in her body. She's a sweet little soul in a disabled body," said Milstead."

"It's a wonderful place where's she's at. It's her home."

Related stories:

Washington decades behind in serving developmentally disabled 

Do experts ignore expert advice on developmentally disabled?

 

 


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