Washington state has a larger population of developmentally disabled adults living in state-run institutions than nearly every other state in the union.
That reality flies in the face of scientific evidence that shows this vulnerable population fares better receiving care in a community setting. And it comes at a high cost: Officials with the state's Department of Social and Health Services (DSHS) say the institutional setting is the most expensive way to care for this population.
"In general, we're paying a fortune for services that are very well established in evidence to be inferior to what we could be buying for less money," said Charlie Lakin, one of the foremost researchers in this field in the country. "We're spending more to get less and that should be of concern I think to public officials (in Washington state)."
There are four institutions for people with developmental disabilities, such as autism and Down syndrome, in Washington state. DSHS refers to them as Residential Habilitation Centers, or RHCs.
When people move out of one of the RHCs, they often move into what are known as supported living homes. These are small homes in regular neighborhoods with two to four residents. Private agencies contract with DSHS to support the individual with an array of services, which can include meal preparation, intensive in-home medical care, therapies, transportation, job coaching and more.
The latest figures released by DSHS show it costs the state $90,972 per year, on average, to deliver around the clock supported living care to an individual living in the community. That's less than half what it costs the state at one of the four RHCs, where the average cost is $222,408 per person, per year.
And research shows many of the RHC residents have the same needs as people who reside in a supported living arrangement. This includes people who are extremely medically fragile and others with behavioral challenges such as aggression or self-injury.
"In supported living we're definitely able to do it cheaper. We're able to provide the service in someone's own home as opposed to in a large setting in an institution. It's just a cheaper way of providing the service," said Scott Livengood, CEO of Alpha Supported Living Services, a nonprofit based in Bothell.
"As long as you put the supports around the person, whether that's staffing support or behavioral support or additional therapies, everyone can live in the community...(and) over time what you see is the person begins to blossom. They have more control over their lives," said Livengood.
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Yusef Khosrow lived at Fircrest for two years before moving into an Alpha Supported Living home at the age of 22. Yusef, now 28, was born with a genetic condition called Fragile X syndrome, which causes a range of developmental problems including learning disabilities, cognitive impairment and for some, like Yusef, aggressive behaviors.
"He would hit people and push ... .He broke a couple of noses. He broke some glasses," said his mom, Ruth Ann Halford. "In the car he would get upset and he would reach out and hit the person who was driving or kick them in the head."
The behaviors got so dangerous and unpredictable, Halford thought about suicide.
"(I considered it) momentarily. I wasn't going to do it, but I couldn't figure out what the way out would be," she said.
Eventually, the way out was getting Yusef into one of the state's RHCs; in his case, it was Fircrest in Shoreline. But in the institutional setting, Yusef's aggressive behavior continued.
"He was looked at as someone who was very challenging to serve. (He was) very aggressive and assaultive toward the (Fircrest) staff," said Livengood.
Staff members caring for Yusef at Fircrest expressed skepticism about his ability to transition to community living.
"(They thought) he needed more protections from what I was hearing," said Livengood. "I think they were predicting he'd be coming back in a few months ... to Fircrest."
That didn't happen. In the six years since Yusef moved into a home run by Alpha Supported Living Services, his challenging behaviors have significantly diminished. Detailed records from Alpha show that when he first moved out of Fircrest in 2009, Yusef exhibited approximately 20 episodes of physical aggression and self-injury on average during 15-day tracking periods. These incidents included slapping people on the head, kicking, head butting, as well as banging his head against the wall, biting and slapping himself.
"Injuries to himself have become severe enough to require hospitalization," wrote Alpha staff members.
But within six months of moving to the community, records show the incidents reduced to approximately two per 15-day tracking period.
"He is nowhere near as violent as he used to be," said Ron Davids, Yusef's job coach from AtWork!, an agency that helps people with disabilities access job opportunities and supports them in the working environment.
"It's been just a tremendous improvement over the last six years from the person we experienced then to the person we experience now," said Davids.
Because of his extreme behaviors, Yusef is one of the most expensive people to support in a community setting. A staff person must be with him every minute of the day. He needs support for all of his skills of daily living, including toileting and eating.
Besides a job coach, Yusef receives other services such as weekly therapeutic horse riding sessions at Little Bit Therapeutic Riding Center in Redmond. Alpha's financial records show his care and services cost $370 dollars per day, which amounts to an annual cost of $133,000 -- 40 percent less than the average cost to support someone in an RHC.
"It's an amazing success story," said Livengood.
RHC advocates insist community costs are higher
Advocates for the RHCs, including some lawmakers and relatives of residents living in the four institutions, said DSHS financial data is incomplete and misleading. They point to a 2003 research paper showing people with higher needs live in institutions and by definition cost more to support in the community.
"[T]here are now stark differences in the populations served in community setting and those remaining in larger settings ... . With respect to comparisons between these two groups, whether on costs, functional skills, quality of life issues, and so forth, population differences must be considered," wrote authors Kevin K. Walsh, Theodore A. Kastner and Regina Gentlesk Green.
"If you do a fully loaded analysis of the group homes you'll find they're far more expensive than having people living at places like Fircrest, particularly when you factor in that these are profoundly disabled people," said state Sen. Maralyn Chase (D-Shoreline).
Fircrest is located in Chase's district. She said she's studied the numbers closely for years and that DSHS never includes many hidden costs in their analysis. Those include costs to local communities such as fire and police responding to emergencies at supported living homes, as well as services such as medical and dental care.
"It's cheaper in the RHCs, it's very clear," said Chase. "If we are so strapped for money, and we are, there's no question we are strapped for money. (So) we need to figure out how to serve the most for the least amount of money and meet their needs."
Other RHC advocates said serving a large group of people on one campus brings savings to the state.
"It's the most efficient way to care for that high needs population of developmentally disabled clients because you have the economies of scale," said Jeff Carter, president of the advocacy group, Friends of Rainier. "Having those efficiencies is much more cost effective because otherwise you'd have to duplicate that 100 times across three counties."
Officials at DSHS acknowledged that there are some clients who present with exceptionally high needs in the community and that the cost of their care exceeds the costs of an RHC. But they said those scenarios are not typical and are included in the averaging.
"People are always trying to say we don't have a good apples to apples comparison," said Don Clintsman, the top DSHS official who oversees the agency's Developmental Disabilities Administration. "At the end of the day, having done our best comparisons, the daily cost of serving someone in an RHC is still more that serving someone in the community."
Providing care isn't the only cost at the institutions. KING 5 examined state documents that outline how much money DSHS has requested from the legislature to keep the aging buildings at the RHCs safe and up to code -- costs that are not included in the average costs of care. Over the next ten years, DSHS has asked for $97.4 million dollars to keep up the four facilities. The capital expenses include upgrades to electrical and HVAC systems, remodeling living cottages and replacing roofs.
"It's shocking. It's amazing the legislature would even consider using funds for something like that," said Livengood. "It becomes a political battle. (That spending choice) doesn't become something based on research...instead it becomes a political battle that wages on in Olympia."
DSHS said the RHCs cost more because professionals are at the ready 24/7 at the institutions, even though many residents do not need that level of service. In addition, the large facilities are staffed with unionized state workers, who make more money than caregivers employed in the community.
Yusef Khosrow's mother said her son's experience highlights the benefits of community living and the financial implications of that choice.
"I'm a taxpayer and yes, I think less expensive, and better. It's kind of hard to beat that as a combination," said Halford.
-- Follow Susannah Frame on Twitter:@SFrameK5.