SIX-YEAR-OLD Joshua Wilson, with his blond hair, vivid blue eyes, and missing front teeth, can at times look angelic. But not today, in this conference room at Children's Hospital and Medical Center. Repeatedly, and increasingly loudly, he lets out something between a moan and a grunt. He starts tearing at his overalls; he finds clothes, for some reason, insufferable. His mother, Dolores, finally strips him, removing the special harness he wears to keep him from pulling off his clothes. But even naked, he runs around restlessly, issuing disturbed sounds and grabbing at everything in sight, including an array of files that he scatters into a crumpled mess.
Around this behavior, a group of professionals sit in a circle of chairs quietly talking. They are assessing Joshua's medical and behavioral condition and, most important, its impact on his mother's ability to get a job and get off welfare, as the law says she must within a year's time.
The medical professionals tell a welfare social worker that Joshua, whose chronic seizure disorder caused brain damage, leaving him developmentally akin to a baby, is neurologically hard to read. They say Joshua would be almost impossible for any day care to handle; they feel he needs to be cared for by the person that understands him best in the world, his mother, Dolores.
FOUR YEARS AGO, welfare reform was hailed as the beginning of the end of welfare, and the ethos behind it was tough-minded: No more handouts; the age of entitlement is over. While those sentiments still exist among conservative legislators in this state, among others, it is now becoming clear to many who work with welfare recipients that some people need public assistance for substantially longer than five years, perhaps even indefinitely.
On many levels, welfare reform has succeeded dramatically. Both nationally and locally, the welfare rolls dropped more quickly and more substantially than anybody expected. In Washington, the number of beneficiaries has dropped almost 40 percent since reform began in August 1997, from 88,000 to 55,000.
"One of the real keys to this is the fact that it became a mandatory program," says Department of Social and Health Services (DSHS) administrator Alan Kiest, whose Eastside office has been one of the most successful in the state at getting people to work. He says past efforts were hampered by power struggles with recipients who claimed they couldn't work because of special circumstances in their lives. Now, he says, there's no arguing. In addition to setting time limits, Workfirst (the state's new purposefully named welfare program) requires everyone to prepare for and seek out work while they are receiving benefits. "Even if you have a special-needs child," Kiest says, "you have to participate."
That approach, combined with an unprecedented level of resources to help people in their employment search, has worked for many, including some with daunting hurdles to overcome. But it hasn't worked for approximately 3,000 state residents who have stayed on welfare since the beginning of reform. Welfare reform is like an onion: The first layers to peel off were those best equipped to find work. Now, with less than a year to go before the first batch of people hit their five-year limit in August, we're down to the onion's core: the hardest cases that four years of effort—classes in life skills and r鳵m頷riting, internshiplike job opportunities, and problem solving around issues such as day care and transportation—have been unable to solve.
Dolores Wilson is only one such case—and not even the hardest one. "We have a lot of cases where there are multiple, multiple issues," says Pat Smith, who administers the DSHS Lake City office that handles Dolores' case. "We might be dealing with someone who had mental health issues, who has been in a domestic violence situation, and who has learning disabilities. . . . We have people who have 11 kids and [immigrants] who are illiterate in their own language."
Though welfare workers knew they would be hitting some difficult cases, the reality has been eye-opening. "You do get the feeling sometimes that people are not trying their best," says Rich Parker, the DSHS social worker on Dolores' case. "You wonder, is this person jerking me around? But every single time I've felt that way, I've ended up feeling guilty. I've gone into these people's homes and found out there are real problems."
Welfare workers are now considering extensions to the five-year limit. Federal law allows states to grant extensions to up to 20 percent of their overall caseloads. But who will get them, and for how long, will be debated over the next few months. The results will have profound implications for people like Dolores Wilson, yet this will be just the latest chapter in a tumultuous saga that has shaped their lives for the past four years.
DOLORES IS an ample woman in her early 40s, with light-brown hair and oversized bifocals. That her circumstances have not allowed her a tidy, orderly life is apparent from her appearance, her manner, and her Northgate apartment, whose bare floors are obviously not often cleaned. But the needs of Joshua and his older brother, Eddie, are clearly central.
The medical staff and others who have worked with her call her a "saint" and "amazing." Somehow, though it sometimes takes a handful of people to handle him outside the home, she copes with Joshua alone much of the time. The boys' father comes around frequently but does not live with them.
Dolores rarely gets a peaceful moment to herself. And she experiences few of the normal rewards that sustain parents. Though Joshua has periods of affection, they are fleeting. Still, Dolores seems unfailingly patient and cheerful. She looks happy to see Joshua when he wakes up from a nap. She says she finds sustenance in her faith and a kind pastor at the Salvation Army. And amidst all the chaos, she summons up the wherewithal to find activities like music camp and dance class for Eddie, who inevitably gets shortchanged on attention. According to Eddie's former teacher Margaret Wahlroos, Dolores makes sure that her older son always has his homework done. "Just really good parenting," Wahlroos says.
As a young adult, Dolores studied early-childhood education at North Seattle Community College. She dropped out when her father died and she was forced to be financially self-sufficient. She went to work in child care, but in 1988, when she was 28, her kidneys suddenly stopped functioning. While undergoing treatment that ultimately was successful, she went on federal disability insurance and stayed on it for a few years.
Along the way, she met a Vietnam vet named Earl Richardson who had dropped out of the army because of his own seizure disorder and entered into a series of odd jobs. Though they never married, they had two children together.
Dolores went on welfare after Eddie was born in 1992, feeling she couldn't work with a new baby. She stayed on welfare during Eddie's early years, which proved difficult. Eddie, too, was developmentally delayed. He didn't walk until he was almost 19 months old, and he had trouble speaking. Dolores says she spent a lot of time trying to figure out the services he needed and fighting to get them.
When she finally got Eddie sorted out—attending a special education program in the public schools, proving himself to be a well-rounded and good-natured little boy despite some difficulty learning—Joshua came along. Unlike Eddie, he seemed perfectly normal at first. Then one day when he was 9 and a half months old, Dolores saw his hands begin to twitch. About an hour later, he went into a full-blown seizure. He started flailing his legs and arms around and vocalizing strange sounds.
Dolores called 911. The medic unit that came didn't allow her to ride with him to the hospital, so she followed in a separate car. "That was the longest ride I ever had," she says. "I didn't know if he'd be alive or dead by the time I got there."
He was alive, and the doctors were optimistic. They said they thought that whatever caused the seizure was something he would outgrow. But he didn't. At 11 months, doctors put him on Phenobarbital, a heavy-duty medication that causes its own problems, dampening alertness and possibly development.
The seizures continued and took a heartbreaking toll: Joshua stayed in diapers, didn't progress to solid food, and never learned language. His medical disorder, never entirely explained, led to behavioral and psychological problems. He easily became upset or aggressive. Always moving, he had to be watched constantly to keep him from hurting himself. He also needed to be medicated several times a day through a gastrointestinal tube, for which Dolores received special training.
Joshua was a toddler when welfare reform was passed. Dolores' first encounter with the new system came when she was called into her local welfare office, then in Ballard. She arrived at the office with Joshua in tow, and, as usual, he was climbing all over the place. "They made me sit in a chair and watch this stupid video," she recalls. It showed an alarm clock waking a woman up in the morning to go to work and explained the new rules. "You expect me to do this?" Dolores asked the woman in charge, who answered in the affirmative. "Lady," she replied, "I can't even sit here and watch this video."
In early January of 1998, DSHS sent a letter to Dolores, her welfare file shows. "Welcome to the Workfirst program," it began. "To help you look for work and find the best possible job, you have been scheduled to attend a workshop that will teach you current job search and employment skills. The workshop is scheduled for five half-days, Monday through Friday from 1 to 5 p.m."
In addition to the workshop, Dolores was told she was expected to spend four hours a week, for 12 weeks, at a program called Job Club that helps welfare recipients find employment. On top of that, she would be required to job hunt on her own for 16 and a half hours a week. She was being given a break, she was told, from the normal 20-hour-a-week requirement because of her special circumstances.
"WARNING," read an all-capitalized note at the bottom of her letter from DSHS, "IF YOU DO NOT FOLLOW THROUGH WITH THE WORKSHOP, JOB SEARCH, OR OTHER REQUIRED ACTIVITIES, AND DO NOT HAVE A VALID REASON, YOUR CASH ASSISTANCE GRANT WILL BE REDUCED UP TO 40 PERCENT AND A PROTECTIVE PAYEE ASSIGNED FOR YOUR CHECK."
A separate letter from her then-social worker made clear that she was not seen to have a valid reason, even though kids were not allowed at the DSHS programs. The case manager wrote that she had made arrangements for Joshua to attend a North End day-care facility.
A few days before Dolores was scheduled to begin the workshop, Joshua's therapist called the day-care center to discuss the boy in detail. Afterward it was agreed that the facility couldn't offer the necessary one-to-one staffing. "We may need to wait until September, when both of the children are at Broadview Thompson and she [Dolores] can participate on a part-time basis," wrote a welfare worker in an entry to a running log of notes kept in Dolores' welfare file. Broadview Thompson is a public school with a strong special education program beginning in the preschool years.
Joshua, as well as Eddie, did settle into Broadview Thompson in the fall. But Dolores still frequently had to drop everything to deal with medical emergencies, and regardless, Joshua was back home by 12:15 each day. The hunt resumed for a day-care facility that was appropriate for Joshua.
Here, welfare workers were entering terrain that has long confounded social service and health professionals: In Washington state, there simply aren't adequate day-care facilities for seriously disabled kids. "This was like coming to the wasteland," says Barbara Kleine, the case manager at a Children's psychiatric clinic Joshua attends, who moved here from another state. She says Joshua, in particular, needs not only a staffing ratio of one-to-one but a compliment of nurses on hand. That's enormously costly. While public schools are legally obligated to provide resources for disabled kids, day-care centers aren't.
In February of the following year, a caseworker in another division of DSHS that supports people with development disabilities wrote a long letter to Dolores' welfare office spelling out a reality her welfare workers were reluctant to accept: "If he [Joshua] could handle a day care (or a day care could handle him), it would be great, but I don't think it is realistic at this time," wrote Emily Hanson-McMullen.
By this time, Dolores' case had been transferred to DSHS's Lake City office and to social worker Rich Parker.
Parker regarded his charge as helping the family in all sorts of ways. In the spring of 1999, he wrote frantic notes in the log about solving an unsafe electrical problem in Dolores' apartment, supplied by the Seattle Housing Authority. It is darkly amusing to read the frustration of one bureaucracy being stonewalled by another: Parker reports that his calls to the Housing Authority go unreturned; when he finally reaches a manager there, he is treated in a curt manner that obviously offends him. Eventually, Parker wins Dolores a new apartment. "That's one victory," he writes, "now we have to find day care for her . . . child so she can participate in Workfirst."
Parker chased down one day-care tip after another, often asking Dolores to investigate as well. In the meantime, he complied with rules demanding a review of her situation every three months. Each time, Dolores had to haul Joshua to meetings and produce fresh documentation of his condition.
Dolores found the demands exhausting. "I have gone through so many hoops," she says. "Check this place, check that place. . . . I'm on the phone trying to call day-care centers, and Joshua's having a fit."
She didn't see the sense of it all. In face-to-face meetings, she says, welfare workers "could see time after time what was wrong with my child."
Parker explains he was unable to call it quits. "There's a lot of pressure here," he says. "We're being told we have to get these people to work—and for legitimate reasons. The public would be mad if we didn't." He adds that if he didn't keep trying, Dolores could be left high and dry by the five-year limit.
In the winter of 1999, a social service agency arranged for Dolores to work part-time in two jobs that were logistically feasible: one as a bus monitor for the public schools, looking after Joshua during his trips back and forth from school; the other, fit in between bus rides, as an assistant in the special education class of Eddie at the same school.
Dolores has said repeatedly that, were it not for the needs of Joshua, she would be happy to work, and her job performance bears that out. Margaret Wahlroos, the teacher that Dolores assisted, was impressed. "It wasn't like she was just putting in her time," Wahlroos recalls. She thought Dolores found meaning in—and derived self-esteem from—her work, helping students individually while the teacher worked with others in small groups. "I would have loved to have [had] her longer," Wahlroos says.
Dolores worked at the school through a subsidized welfare program called Community Jobs, which lasts only nine months (spread out, in Dolores' case, over two school years). On its own, the school wasn't able to offer Dolores a job. It was then the winter of 2000.
The welfare clock ticked on. Dolores heard more and more about the five-year cutoff. And at the beginning of this year, the possibility of an "out of home placement" for Joshua starts to appear in the DSHS log. At the request of social worker Parker, a DSHS worker broached the topic with Dolores. "I was devastated," she says. She wrote an outraged letter to Parker's superior, and the matter was dropped, at least temporarily.
Parker says the intent was never to send Joshua away immediately, but to explore the prospect as a long-term solution to a difficult family situation. "I was looking at her needs, at Joshua's needs, at Eddie's needs." Described by colleagues as unusually compassionate, Parker knew from his previous work with disabled kids that their families sometimes turned to group homes, particularly as the kids reached the typical age of independent living. Yet his notes in the log suggest that he and others grew to see such a placement as a more immediate solution to a case that otherwise seemed unsolvable.
Parker doesn't deny that the suggestion was bound up with the objectives of welfare reform. He says, "The program requirements are there, and we're required to look at all angles."
This never-ending quest is frustrating for those whose main concern is Joshua. "If we didn't have to cope with the limit of Dolores' welfare payments, we probably wouldn't be focusing on day care [for Joshua]," says Barbara Kleine, the Children's psychiatric case manager. "We would let Dolores stay home and take care of him—because she does it better than anybody else—and that would be a good outcome."
GIVEN THE LESSONS learned in administering welfare reform over the past four years, will the system change? Is it now prepared to accept that some people, if only a small subset, shouldn't be forced into a model that doesn't fit their circumstances? The futile attempt to do so with Dolores makes a strong case for a different approach.
As state officials contemplate what to do with those whose time is running out on welfare, it seems likely that they will adopt some measure of leniency. A recent DSHS draft proposal outlines three- to 12-month extensions for people facing carefully defined problems. An inability to find care for a disabled child such as Joshua, for instance, would qualify a welfare recipient for a three-month extension.
That isn't long for a profound problem. Ken Miller, Gov. Gary Locke's top welfare advisor, indicates that the governor is weighing permanent exemptions for a subset of people— in particular, the disabled, those with disabled children, and older grandparents taking care of their grandchildren. Locke wanted to exempt this group when the state was crafting rules on welfare reform, but it wasn't politically feasible.
By current law, Locke has the power to determine policy on extensions and exemptions. The Legislature, however, will get a chance to tinker with the law in January, and it is a wild card. Conservative state Sen. Harold Hochstatter recently told The Seattle Times that his Eastern Washington constituents probably wouldn't want to give those facing the deadline another "red cent."
Even if Dolores and others like her get permanent exemptions, they might never see the end of three-month reviews, documentation, and DSHS visits. "Our ultimate goal is still to get the parent to be as self-sufficient as they can be," says DSHS's Pat Smith. "This is no longer an entitlement program."
In any case, Dolores, among others, will be cut off from welfare when Joshua turns 18 because benefits are only for those with children who are minors. Welfare staffers say that such a prospect compels them even more to get these people into the working world.
"The thing is, we're just going to keep putting things on the table," says social worker Parker. "We're going to keep reviewing, with the understanding that it will happen in the near future."
But Dolores, for her part, is shaped by an existence that forces her to live intensively focused on the present: "They keep telling me, 'You got to think about your future.' I say, 'Yes, that's true—but what about Joshua?'"