Parents, guardians and other family members of people living in Washington state’s institutions for the developmentally disabled defend the four facilities as providing an excellent quality of care unavailable in most communities.
Supporters of the facilities, known as Residential Habilitation Centers (RHCs), often say they are comforted by the fact that their loved ones are living on a controlled campus, protected from the harsh realities of the everyday world and provided with a level of attention from trained staff.
But the quality of care at the state's four institutions for the developmentally disabled has been found by government inspectors to be significantly out of compliance. Federal experts who visited the facilities in 2015 found so many violations of state and federal regulations that they took the drastic step of withholding federal funding from three of the four institutions.
The federal inspectors froze new admissions at the three facilities for an 11-month period -- until they made the necessary improvements to get back into compliance with the Department of Health and Human Services's Centers for Medicare and Medicaid Services.
The three RHCs found to be out of compliance are Fircrest in Shoreline, the Rainier School in Buckley, and Lakeland Village, west of Spokane in Medical Lake. The CMS inspectors concluded that the Yakima Valley School, located in Selah, is in compliance.
The violations of both federal and state regulations range from leaving vulnerable clients strapped to chairs and toilets for long periods of time without staff checking on them, to exploiting them financially.
“I was shocked. I was really upset that this was the kind of care that people were receiving there,” said John Lemus, a representative of the nonprofit People First, which advocates for the rights and self-determination of people with developmental disabilities, such as autism and Down syndrome.
The negative ratings of three RHCs by federal inspectors is a highly unusual circumstance for the state. Not since the 1980s have multiple institutions for the developmentally disabled been found to be out of compliance with Medicaid standards.
“This was an unusual event. It was a huge wakeup call for us,” said Don Clintsman, the deputy assistant secretary for the state's Developmental Disabilities Administration. “We are really looking at correcting the entire system in a really significant way to make sure that staff get to doing the work the right way and doing the right work that people need.”
At Fircrest, CMS inspectors logged 49 pages of violations after a visit to the facility last May. Among the findings were clients not being provided meaningful activities. “The facility did not ensure Clients received continuous active treatment services that included aggressive and consistent implementation of formal and informal training programs and supports. Clients were observed spending significant blocks of time where no formal or informal training occurred,” wrote the surveyors.
The inspectors observed one resident on several occasions experiencing “no meaningful activity”; spending hours “sitting in a chair by a window”, despite records in his file showing the client was capable of many other activities.
The inspectors cited Fircrest for lack of follow up after allegations of abuse or neglect surfaced. “The facility ... failed to ensure allegations of abuse, neglect and mistreatment were reported to (DSHS) and incidents were thoroughly investigated,” wrote the inspection team.
Violations were also found in the facility’s emergency response and training policies and procedures. The inspectors noted that a resident experienced a heart attack on January 28, 2015. Staff performed CPR and brought a defibrillator to the scene. Yet no one hooked up the defibrillator. The resident passed away.
Surveyors found staff had not been properly trained with the potentially lifesaving piece of equipment. They wrote: “Failure ... to ensure that medical emergency responders received regular documented training on medical emergency scenarios prevented the responders from having the opportunity to practice and refine their skills and ability to respond to real medical emergencies and puts Clients at risk should a medical emergency occur.”
The surveyors also discovered financial exploitation of the vulnerable clients. Staff in one area of Fircrest on several occasions “used clients’ money” for a “Cooking Program.” Employees spent hundreds of dollars on things like pizza, groceries for a full spaghetti dinner and Sunday Bar-B-Ques, enjoyed by clients and staff alike. The problem is that a manager told the investigators that Fircrest “did not have a cooking program." And when surveyors asked what clients were going to learn from the program, “staff did not know."
"Those things should not have occurred," said Clintsman. "(But) we welcome the findings. We welcome the opportunity to make improvements."
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The CMS survey team detailed violations in a 48-page report regarding failures to meet standards at the Rainier School after an inspection was conducted in March 2015.
They found a pattern of “medication errors" and “mistreatment of clients." In one example a staff member was seen “kicking a resident” to get him to stand up. The employee’s defense was that the resident “liked to be kicked.”
They also observed clients sitting “for long periods of time in restraints”. One resident was left “restrained on a toilet for 27 minutes” without anyone checking on his comfort or safety.
“To think that someone would be strapped onto a toilet and left there. That’s not humane. People who live out there deserve the dignity of good care. And there’s troves of federal documentation that says they are not receiving the care that they deserve,” said Lemus.
During an inspection at Lakeland Village, investigators found clients spending hours doing nothing, a failure to report and research allegations of abuse as well as instances of staff reporting they had “no direction on what to do” in meeting some of the client’s treatment needs.
The executive director of the union that represents most of the 2,300 state employees who work at the institutions said the reason for the bad inspection reports is easy -- money. During the recession the legislature pulled funding and staff.
“In 22 years I’ve never seen state government cut so deeply during that period and that has a cascading effect over time and I think that’s the aftermath, those findings,” said Greg Devereux of the Washington Federation of State Employees. “When that happens you lose your institutional knowledge, and over time that can really result in all kinds of violations.”
Many advocates don’t accept that reasoning, as the RHCs get the lion’s share of tax dollars.
On average it costs about $91,000 a year to care for someone with significant disabilities in a regular neighborhood with staff helping them around the clock. In an RHC, the average cost is more than double that at $223,000 per person, per year. To fund all four of the state’s RHCs, it’s nearly $200 million per year of the DSHS budget.
“Dumping millions of dollars into a system that is documented as failing several times over by the federal government is not good policy. And there is not a legislator in this state who could look at me right now and say that it is. It is not good policy,” said Lemus.
Washington state runs more institutions for the developmentally disabled than most other states. This bucks the trend of states working toward getting out of the business of institutionalization. There’s been significant pressure by way of legal actions from the U.S. Department of Justice, which views unnecessary institutionalization of the disabled as a form of discrimination.
The push is to have this population integrated into society where they can be a contributing member of their communities. Many people in Washington with significant disabilities are successfully served in the community in what is called supported living homes, where the state pays caregivers to tend to client needs 24 hours a day. Sixteen states, including Oregon, Michigan and Alaska, have closed all of their institutions. Currently Washington has no plans to do so.
The many violations at the RHCs provide fuel for advocates pushing to stop the segregation of people with developmental disabilities.
"I’m very upset. I’m very disappointed,” said Mike Raymond of Tacoma. Raymond was born with a developmental disability and is blind in one eye. He spent his entire childhood at the Rainier School back when abuses were common.
“I think it’s (expletive). Pardon my French, but I think it’s crap," Raymond said. "I think it’s crap. They should have closed them down long ago.”
Deep trouble for Lakeland Village nursing home
The highly irregular findings of so many violations found at multiple RHCs comes on the heels of a dark time at the nursing home wing of Lakeland Village. In 2013 and 2014 federal inspectors found thousands of serious violations in that area of the facility. They yanked federal funding and at one point planned to shut the place downall together.
The CMS surveyors found what amounted to people being warehoused. They wrote there were “absolutely no planned activities” for many of the residents. They found a medical system in disarray: “missing physician’s orders” led to inappropriate therapies for clients and medication mistakes. They also cited the facility for an over-reliance on restraints. They saw people “tied in a chair," ”facing the wall or television,” and ”unattended for extended periods of time."
In addition, inspectors from DSHS’s Residential Care Services cited the Lakeland Village nursing home for several violations in 2014. One resident was hospitalized after a nurse administered the wrong drug. Staff also failed to prevent another client from ingesting toxic detergent on two occasions, which led to life threatening injuries as well as chemical burns to her throat.
“I think that we have failed people that live in the institutions. We’ve failed the citizens of the state for not using our resources more effectively,” said Sue Elliott, executive director of the ARC of Washington State. The ARC works to promote and protect the human rights of people with developmental disabilities.
“It’s probably ‘shame on us’. It’s us as citizens. We haven’t demanded that there be something different for this group of people. I think it’s up to each of us to make sure that our legislators know that we want something different and better for this group of people.”
Back in compliance at Lakeland Village
The nursing home at Lakeland Village rushed to make changes and got back into good standing with the federal government. It is now back in compliance. The rest of the facility, cited for the violations in 2015, received a letter on January 5, 2016, stating a re-inspection found the facility in “substantial compliance” and that “you are no longer denied (federal) payment for new admissions”.
“You go out to Lakeland Village today, it is a different place,” said Clintsman. “Lakeland Village gets it. They understand what it means to provide good services for people….I just have great respect for that staff.”
The Rainier School and Fircrest both submitted detailed plans of correction to CMS and are waiting to for inspections to see if they are back in compliance. In the meantime Clintsman said they’re continuing to improve by retraining employees, updating policies and making sure their staff members understand them.
“We are taking it seriously and we aren’t going to rest on it. I keep telling staff, ‘We’re not going to rest on this. We are going to continue to push the needle,’” said Clintsman.
-- Follow Susannah Frame on Twitter: @SFrameK5