Fight Over Institution Divides Families
SEATTLE — Forrest Sargent waved his arms in front of his face, fingers dancing frenetically.
It was his first response to the question: How does he like Fircrest School? Sargent, who has autism and is mostly nonverbal, has spent eight years at the state-run residential center in Shoreline.
In that time, the 26-year-old has become a minor celebrity as a nature photographer, featured on TV and exhibiting around town, including at the Museum of Special Art, which is devoted to artists with disabilities.
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He came to Fircrest in crisis.
Given to outbursts, he had chased a group-home manager down the hall and wound up in a mental-health facility, according to his parents, who said they found him there in a freezing room, dirty and hungry.
Eventually, he landed on Fircrest’s roughly 90-acre campus and in the middle of a debate that has lasted for decades and prodded the Washington state legislature this year — for the third time at least — to consider phasing out the facility for about 200 people, 16 and over, with developmental disabilities.
In an age when integration into the community is considered a civil right, do institutions such as this have a place?
And, some ask, when a facility sits on a stunning, wooded parcel that could fetch millions in an overheated real-estate market, is it being used most effectively?
Sargent and his family have unequivocal answers, helping to explain why Fircrest has survived up to this point.
In a Fircrest activity room where Sargent meets with a speech pathologist, he settled down as his dad, Denny Sargent, held out a blue board bearing the letters of the alphabet. Sargent sat down and began to spell, his dad articulating the words. “I am happy here.”
Forrest Sargent’s arms took off again. Then he continued spelling. “I have a skill.” Letter by letter, he explained he has a delivery job on campus.
Fircrest, he added, is “safe.” He spelled the word out, twice.
His parents have been saying the same thing to whomever will listen. Only at Fircrest, they say, has their son gotten the all-encompassing care — including on-site medical treatment — that he needs. “He’s doing way better here than he’s ever done anywhere else,” said his mom, Rebecca Hood.
“I’m terrified,” said his dad of the notion Fircrest might close.
Some may already think the facility is closed, so long has talk of shuttering the place been going on.
“It’s like a secret,” said Jim Hardman, a retired lawyer and guardian of 20 Fircrest residents. He’s another passionate defender, as is the union representing Fircrest staffers.
They are fighting a chorus of accepted wisdom.
“I believe everyone belongs in the community, no matter what,” said Shayne Nagel, executive director of the Snohomish County chapter of The Arc, a large advocacy group for people with developmental disabilities. Case in point: her own daughter with severe autism, who lived at Fircrest before moving into a home staffed by a private agency.
Like many, Nagel considers institutions the outdated product of a “warehousing mentality,” remnants of the days when doctors told parents to drop off babies with autism or Down syndrome at a place like Fircrest and not look back.
“Behind the times”
Fircrest and other institutions have changed a lot. Yet states have a mandate, under the 1999 U.S. Supreme Court Olmstead decision, to rely on segregated facilities as little as possible when serving people with disabilities.
Tennessee in May joined the ranks of more than a dozen states that have closed all such institutions.
Washington inched in that direction in 2011 by shuttering the Frances Haddon Morgan Center, a Bremerton “residential habilitation center,” as these facilities are called. Four remain open, despite a 2013 recommendation by the state auditor’s office to reduce the number. It costs $193 million a year to run all four institutions.
The recommendation cast the matter in terms of equity.
A minority of clients with disabilities served by the state Department of Social and Health Services (DSHS) live in its institutions: roughly 700, as of June 1, compared to 33,000 who receive state funding to live in group homes or other private facilities, or to get help like physical therapy and work training while living at home.
It’s far more expensive to support people at institutions, the state auditor’s office said, reiterating an oft-heard complaint. The monthly cost was about $20,000 per person in fiscal year 2016, half of which is paid by the federal government.
It’s hard to make an exact comparison with the cost of serving people in the community; advocates for institutions say those who live there have more profound disabilities and receive a greater level of care.
But one fact, stressed by the auditor’s office, is clear: Thousands of people — nearly 12,000 currently — are not receiving any state services, in large part, because there isn’t enough money.
What’s more, some people who want to move out of institutions can’t, because there aren’t community services available for them. Disability Rights Washington is currently suing the state on their behalf.
“We’re a little behind the times here,” said state Sen. Dino Rossi. Meanwhile, the Sammamish Republican noted, Fircrest “is sitting on a valuable piece of ground.”
He co-sponsored a bill this legislative session that would close about half of Fircrest, serving residents in group cottages that comprise its “intermediate-care facility,” by 2022. The other half, a nursing home, would close when its number of residents falls to 16.
Fircrest’s property (except for a small slice belonging to the Department of Health), would be sold or leased and the money put toward serving people with developmental disabilities in the community, according to Rossi.
Yet Sen. Karen Keiser, whose name is also on the bill, expressed frustration. The Kent Democrat wanted a softer phaseout and didn’t put an end date on an earlier bill she introduced. It was “hijacked,” she said, by legislators wanting to squeeze out immediate budget savings.
Fircrest supporters held a protest outside the institution in May and lobbied legislators.
“We lost votes,” Keiser said. The bill still stands a chance amid ongoing budget negotiations, but a slim one.
Even so, Keiser said, “This is not going away.” She promised to be back next year with another bill.
Work and photography
Denny Sargent walked toward a cluster of cottages lining a manicured lawn on the Fircrest campus — whose various and aging buildings, including a gym and lovely chapel with wooden rafters, are scattered among evergreens.
He pointed out patios with barbecues in front of the shingled units and a vegetable garden he had planted in front of his son’s residence.
“They make it sound like medieval dungeons,” he said, referring to Fircrest’s critics. Yet, he said, the place really looks just like a bunch of group homes.
The younger Sargent shares his with about a dozen people. His room, with tall windows, has three of his photos hanging on the wall, one an arresting shot of vivid orange poppies.
Sargent was a normally developing child until about 2, his mom, Rebecca Hood, recalled. Suddenly, he began to regress and become aggressive. He bit her in the arm and woke her up, once, trying to claw her eyes out.
They tried group homes starting when he was about 9. One locked the boy in his room every night after dinner for years, his mom said. At another, she said, he ended up with a broken nose after a scuffle with a staffer.
Still, he made progress, especially after his parents trained with a woman who taught people with autism to communicate using a letter board. A teenager then, one of his early requests was for a camera.
On outings with his father, he captured pictures of flowers, animals, trees and clouds.
But as Sargent approached adulthood, his aggressiveness kicked up a notch. His last group home didn’t want to keep him, according to his parents. Then came the crisis that brought him to Fircrest.
One reason Sargent has succeeded at Fircrest in ways he hadn’t at group homes, his parents believe, is that many more people are involved in his care. Doctors found a cocktail of medications that address his seizure and bipolar disorders. Nurses monitor the drug’s effects. His speech pathologist, Ross Baarslag-Benson, teaches Sargent to communicate with an iPad kept in place by a contraption the staffer has built out of brightly colored pipes.
For five-and-a-half hours a day, staffers in the work-training program guide Sargent through his job. One afternoon, as Sargent wheeled a big blue cart around campus, picking up bags of garbage and taking them to dumpsters, a staffer prompted him at key moments: “Do you want to pull the cart over to the dumpster?” “Do you want to throw the lid open?”
Luisa Parada-Estrada, a spokeswoman for DSHS’s Developmental Disabilities Administration, said the guided work illustrates the “active treatment” the feds now demand of institutions like Fircrest.
Staffers once saw their role as doing things for residents, she said. Now, employees are supposed to teach residents to do things themselves. “As soon as you arrive, we’re planning to get you back into the community,” she said.
It’s an imperfect system. Residents frequently stay years. DSHS recently found that Fircrest’s Immediate Care Facility had inadequate active-treatment plans, and was out of federal compliance. Fircrest has until July 14 to rectify the situation. Meanwhile, no new admissions are allowed.
Life in the community
Some people do transition out.
In 2011, Nagel found herself in the uncomfortable position of placing her daughter, Erin Nagel, in an institution. Like Sargent, the young woman with autism was going through a crisis. Behaviors more or less under control at her group home suddenly got worse. She screamed. She hit her head. She banged her arms on tables, turning herself black and blue.
In the psychiatric unit of Seattle Children’s Hospital, her mom demanded a battery of tests to figure out what was wrong and how to help, but at the end of 30 days, nobody had any answers besides Fircrest.
Despite her professional and personal devotion to deinstitutionalization, Nagel said, “I felt like that was the only option.”
What would she have done if it didn’t exist? “That’s a really good question,” she said, pondering. If the state truly committed to putting money into community services, there would have been other, more palatable options, she said after a minute.
Nagel said she found Fircrest staffers fine and the on-site services convenient. “It’s just not a home.”
And, she said, the doctors there gave her daughter so much medicine that the young woman was lost in a fog, unable to get out of bed in the morning.
Using a federally funded program called Roads to Community Living, Nagel started planning to get her daughter back in the community. Two-and-a-half years later, Erin Nagel moved into a triplex run by Alpha Supported Living Services.
Erin Nagel has her own two-bedroom, and at least two Alpha staffers with her at all times — care that her mom concedes doesn’t come cheap, although she said she doesn’t know how much the state pays and DSHS did not provide figures for such an arrangement.
It’s one that Nagel said allows her daughter to make choices impossible in Fircrest’s group living. When the now 25-year-old feels like plunking the piano her parents placed in the living room, she does. Ditto when she wants to immerse her hands in the backyard sandbox. “She’s always got her music playing,” Nagel added.
“She’s loving her life in the community, I can tell you that,” Nagel said, recounting times she’s showed up to find her daughter dancing with staff, grinning.
On a recent afternoon, Erin Nagel was more subdued, though one of her favorite albums, Paul Simon’s “Graceland,” was playing. She drifted back and forth from her bedroom, where a teddy bear she likes to cuddle sits under a tent of green gauzy curtains, to her mother in the living room.
“Van ride,” she said finally. It’s one of the few phrases that she speaks, denoting a treasured activity. She gets two rides a day, sometimes to a park or a class.
She wanted one now, and eventually conveyed her frustration at waiting with a scream.
There was nothing for it. She had made her choice known. Staffers bundled her into their van and drove off.
© 2017 The Seattle Times
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