The evaluator came on a cloudy afternoon last April, bringing a state-issued laptop and another chance at a long-held dream.
She sat with Amy and Tony Crawley in the living room of their Kirkland home as they pleaded for help with their son, Rowan, then 7 and struggling with severe autism.
She listened to their story about how a recent trip to a nearby pharmacy ended with Rowan clearing a shelf of supplements and scratching Amy’s arm so hard it bled.
She watched the boy cling to his mother, unable to talk or make eye contact, a wash cloth dangling from his mouth for him to chew to calm his anxiety.
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She typed their wishes into the laptop — access to a behavior program, help paying for needed therapies, an occasional visit from a trained caregiver to give them a break.
Six weeks later, the results of the update evaluation arrived by mail: Rowan still met the state’s criteria for receiving services.
But still, the letter reported, “there is no funding available.”
Perhaps no phrase better summarizes the system for residents with developmental disabilities in Washington state, where some 14,600 families determined eligible for services don’t receive any.
It is not a waitlist, per se, because that term implies a linear path toward an end.
Advocates say the only way off the “No Paid Services Caseload,” as it is called, is experiencing a crisis and catching an evaluator’s attention just as a spot opens.
“It’s essentially a lottery,” said Ed Holen, executive director of the Developmental Disabilities Council, an advisory organization whose members are appointed by the governor. “There’s no difference between those receiving services and those not receiving services, except that one group has managed to get the services.”
That group gets access to a variety of programs, from in-home services such as those sought by the Crawleys to job training, supported living in a group home or round-the-clock care at a state-run institution.
Families on the No Paid Services Caseload have been waiting for at least one of those services an average of three and a half years, according to the state.
As of last April, the Crawleys had been waiting six and a half years.
It would have been impossible for the evaluator to compare their situation to the other 14,600 families, however, because the state doesn’t know much about them.
Budget reductions led the Developmental Disabilities Administration to cut case managers in 2011, limiting officials’ ability to prioritize those not receiving services or even know what specifically they need.
“We know that they came to our attention at some point, and at that time were determined eligible for services,” said Evelyn Perez, head of the administration. “But that’s about it.”
The lack of case managers to guide families has also left some unable to get services they’re entitled to under federal law, Perez acknowledged.
She said new money for services helped the state trim the caseload by about 1,000 last year, ending repeated increases fueled by applicants growing faster than funding.
Lawmakers are trying to slash it even further.
Senate Bill 6387, sponsored by Redmond Republican Andy Hill, would enable the state to access more federal funding to serve 5,000 more families by 2017.
Advocates praised the progress but cautioned it is only a start.
It would not help, for example, families who are not on Medicaid — such as the Crawleys.
Many states struggle to support all residents with developmental disabilities, but local and national experts say Washington fails more than most.
A recent state Auditor’s Office report found Washington ranked 36th in the country in serving residents in 2010, the latest year for which national data were available.
In the two biggest categories of programs, Washington served 179.4 residents per 100,000 total residents, below the national average of 220.2. Oregon served 326.8.
Overall, Washington served about 20,000 families. It is estimated there are quadruple that many residents with developmental disabilities here, although many don’t want help, don’t know it’s available or how to get it.
Part of the reason Washington serves so few people is that it spends a lot of its budget on providing services in expensive institutions. The state serves 32 percent more people per capita in institutions than the national average, according to the audit.
But Washington also just spends less than others. It ranked 38th in per capita spending in a University of Minnesota study based on 2011 data.
“It’s pretty clear Washington doesn’t serve nearly as many people as other states,” said John Agosta, vice president at the Oregon-based Human Services Research Institute.
“Failure to thrive”
The first three months of Rowan’s life unfolded normally, giving the Crawleys some of the happiest moments of their lives.
Then he stopped sleeping, eating and gaining weight.
The diagnosis was “failure to thrive,” the first in a series of labels.
Amy left her corporate job at Godiva Chocolatier to care for him full time.
The family first got on the No Paid Services Caseload in the spring of 2006, after doctors inserted a feeding tube in 10-month-old Rowan’s stomach.
At that point, the Crawleys didn’t need services, because they were already getting help from a separate entitlement for all developmentally disabled toddlers; a therapist helped Rowan learn to sit up, another helped them all with the tube.
But the program would not help Rowan after he turned 3, and the Crawleys wanted to position themselves to get state services after he did.
They had no idea how long they would wait.
“We got really frustrated when he turned about 5,” Amy said, “because at that point we finally realized the depths of his problems and what he needed.”
Rowan needed physical therapy to learn to move, occupational therapy to learn to do basic tasks and speech therapy to learn to communicate.
Recent lawsuits have forced some insurers to cover all therapies for disabilities such as autism. But some carriers still do not.
Health insurance from Tony’s job as a hair stylist covered just four therapy sessions per year, and the Crawleys couldn’t afford more.
They used the sessions on feeding-tube help and counted on Helen Keller Elementary School’s special-education program for the rest.
Rowan attended a self-contained autism class with a dozen students in kindergarten through second grade. Every week, he received an hour of speech therapy and 30 minutes each of physical and occupational therapy.
Amy eventually got a job with the school district, matching Rowan’s schedule and receiving insurance coverage for 45 annual therapy sessions — not enough, but better.
Tony shifted when he worked, too. One parent always had to be home, because no baby-sitter could handle Rowan.
Amy read to him or put on the Beatles and encouraged him to dance. Tony took him on walks and slept with him every night.
Bellevue Presbyterian Church provided friends and one hour per week for the parents to be alone, together — at church, between 11 a.m. and noon on Sundays.
Hope of getting help seemed a long way off, even longer after the state cut caseworkers.
“We felt like we were just being forgotten about,” Amy said.
Discussing how to reduce the caseload inevitably leads to one of the most charged topics in the developmental-disabilities community: state institutions.
The controversy is simple: institutions are expensive.
The estimated 900 people living at Fircrest School in Shoreline, Lakeland Village near Spokane, Rainier School in Buckley or Yakima Valley School in Selah make up less than 5 percent of disabled residents receiving services. But at $203,000 apiece each year — $182 million total — they take up 17.8 percent of the about $1 billion the state spends on the system.
Put another way: Removing one person from an institution could allow the state to help 10 families such as the Crawleys.
Some have pushed for years to close institutions, but employees and family members of residents have resisted — and been relatively successful in part because the institutions are unionized and the unions are powerful.
“People need these facilities,” said Paul Strand, whose 44-year-old son lives at Fircrest. “It’s just impossible to take care of these folks in the community.”
The debate illustrates a larger issue: Washington’s developmental-disability programs are generally regarded as some of the best in the country — which, ironically, exacerbates the misery of those who don’t receive them.
“It’s absolutely a situation of haves and have-nots,” said Joe Cunningham, outreach coordinator at advocacy group The Arc of King County.
Harder to control
As Rowan grew, his behavior worsened.
Last winter, he started pinching classmates, then kicking them and pulling their hair.
It was not out of malice, Amy said. “He doesn’t understand anger. He just understands attention. And he figured out that when he does these things, he gets attention.”
The parents were getting exhausted. At 4 foot 2 inches and 60 pounds, Rowan was getting harder to control.
After the pharmacy incident, Amy and Tony stopped taking him into public except for occasional trips.
They called the state, sure a new evaluation would lead to services.
Three months after being rejected, a psychologist at Seattle Children’s Autism Center program advised that Rowan needed in-home behavior therapy at least four times a week, plus weekly speech and occupational therapy sessions.
It was seven times more than he was receiving.
New federal funds
The new federal funding comes from an Affordable Care Act provision called the Community First Choice Option.
It allows states to apply to the federal government to cover 56 percent of certain services for disabled and aging residents on Medicaid, instead of the usual 50 percent.
If accepted, Washington would get about $80 million more per year — half of which would need to go to program improvements.
The bill sponsored by Sen. Hill, the Redmond Republican, would direct the rest about equally between services for 5,000 more people and the general budget.
The Senate budget writer said that would solve the problem because only 5,000 of the 14,600 waiting families are on Medicaid and have actually applied for help. The rest don’t immediately need services, he said, maybe because they applied early to position themselves for the future.
While some families, such as the Crawleys, do apply early, advocates said others haven’t applied because they can’t figure out how without the case managers.
Plus, advocates said, many make too much to receive Medicaid but still need help — including the Crawleys.
A separate bill in the state House would put all of the new money toward services.
On the Friday before the Super Bowl, recess at Helen Keller buzzed with excitement.
A group of fourth-graders set up a football game on puddle-filled sand. Two fifth-graders in Russell Wilson jerseys debated the merits of a new Pharrell Williams song. A teacher arranged her students into a giant 12 for a photograph.
Rowan stood by himself, head cocked toward the sky, before suddenly yanking the blonde hair of a passing second-grade girl.
At home, Tony called the evaluator who came last April to update her on Rowan’s increasing behavior problems and again plead for help.
“Has he hospitalized anyone?” the evaluator asked.
“No,” Tony said, “but why do we have to wait until he hospitalizes someone?”
The voice on the line had no answer.
She promised to schedule another evaluation.
Brian M. Rosenthal: 206-464-3195 or firstname.lastname@example.org.