Looking forward to meeting with LEND students at UIC tonight.Boy does this story sound familiar. The Arc, Charlie Lakin and other advocates quoted
in this story.


Do lawmakers ignore expert
advice on developmentally

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.

Video of Story

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.

Washington decades behind in serving developmentally disabled

About 800 people still live in Washington’s four institutions — Fircrest in Shoreline, the
Rainier School in Buckley, the Yakima Valley School in Selah and Lakeland Villagein

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

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

“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.

“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 a1992 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

“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

“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
stateSen. 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

“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.

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)