Nickel-and-Diming Problem Kids

In the name of fiscal prudence, Congress has ordered that a whole class of poor, troubled children be "redetermined"

He was, his mother says, an angry child. At 4, Lawrence climbed trees and threw himself out of them. Six times at the age of 6 years, he was hospitalized for being a danger to himself and others. Then he spent two years in a residential clinic, where he worried, of all things, about other kids making fun of him for praying before meals. He was also intelligent, fearless, vulnerable, hard to control. Finally, his mother had to make a decision.

“I had to choose between institutionalizing him and trying to keep him safe, trying to help him,” Gail says. (She asked that her last name not be used.) She's sitting at a table in a small room above Monterey Boulevard, in the offices of Parents Helping Parents, an advocacy group for families of children with disabilities. A strikingly thoughtful woman of 40, Gail works at the organization as a parent advocate. As she speaks about her son, now 10, her golden eyes glow behind wire-rimmed glasses.

“I was constantly afraid for him,” she says, remembering her old neighborhood, Western Addition, with its shadows on the corners, their lure of violence, chaos, and loss. “I didn't want to see him toting a gun.”

So, on the recommendation of Lawrence's doctor, Gail applied for Supplemental Security Income (SSI), the federal program that provides cash to the aged and disabled. Twice, she was turned down. Persevering, she prevailed. With the extra money, Gail moved to a calmer neighborhood — one without guns and drugs — and kept her son with her.

Now the help that made the move possible might disappear.
Gail is one of the 354 heads of families in San Francisco who last fall received a letter from the Social Security Administration that contained bad news. As part of the new welfare regulations Congress passed last summer, rules for SSI became more restrictive. Some 15 percent of children receiving SSI money will be kicked out of the program. The government calls it “redetermination.” Gail calls it a disaster.

Mental illness is not well understood in our society — not even in Congress, where paranoia, delusions of grandeur, and other hallmarks of instability seem to be required behavior. As a culture, Americans tend to tell each other to just get over it. And while Congress has managed some sympathy for children with physical disabilities, it harbors the suspicion that emotionally troubled youth are acting crazy just to get free cash.

Gail, who lives day to day with her son, sees the matter differently. “The thing about it is the children cannot help how they act. It is totally out of their control. … Whatever's bothering him, he takes it out on the whole wide world.” Even attending simple after-school programs is problematic. They “generally say, 'We can't handle him, you have to find somewhere else for him to go.' But after-school programs are nonexistent for children with emotional problems.”

That leaves parents in a tough position, especially if they want to work.
And unlike kids with easily visible ailments, the emotionally disturbed child can be hard to pick out in a crowd. Their very invisibility is an added handicap. “People tend to expect more from them,” Gail says.

This spring, Gail and her son will be “redetermined” for SSI by the government. Their future lies in the balance.

“The worst thing in the world is having a hungry child on your hands,” Gail says. “Not hungry necessarily for food, but hungry for knowledge.”

Like the shadows in their old neighborhood, hunger lurks around the corner for Gail.

When it comes to disabled children and SSI, the media has some penance to pay — though it was just one player in a highly involved, convoluted drama. When Congress started hunting around for pesky welfare programs to curtail in 1995, it relied on some extremely anecdotal news reports of fraudulent payments to SSI children.

It had to look no farther than the generally liberal, politically influential Washington Post. In 1994, staff writers Bob Woodward and Benjamin Weiser published a story headlined “Costs Soar for Children's Disability Program; How 26 Words Cost the Taxpayers Billions in New Entitlement Payments.” The longish article was pegged to the explosion in SSI payments to children over the previous four years, which had in fact occurred after rules were changed to better reflect the diagnostic complexities of measuring childhood disabilities.

Mentioned prominently was the fact that the money comes as cash to families — much like Social Security checks — with no rules about how it is spent. Woodward and Weiser told a few stories, but offered scant numbers. Their report was followed by one on Primetime Live, which was also long on anecdotes but short on meaningful facts.

Congress, needless to say, had a collective heart attack and then recovered sufficiently to put the stories to its own use — buttressed by the phenomenal growth in the program. In the overall context of welfare reform, children's SSI became a natural, and easy, target. There's only one problem, however, with this glib scenario: Studies by the government and outside nonprofits in the wake of the uproar have repeatedly shown children's SSI to be pretty much fraud-free. The General Accounting Office (GAO) in 1995, for example, discovered problems with only one-tenth of 1 percent of children's SSI enrollments.

“Yes there are problems in the program, but they could have been changed with small changes,” says Marty Ford, legislative advocate for The Arc, a national association for retarded citizens. “But what resulted was legislation that could have kicked 300,000 kids off the program.”

In a 1995 analysis of the feeding frenzy over children's SSI, Wall Street Journal economics writer Christopher Georges warned that there was a major change coming down the pike in a program that serves very severely disabled children in very poor families that might be done entirely on anecdote and media furor. But the livestock was already out of the barn in Washington, and despite some backtracking by the Post and other papers, SSI for children, ridiculed as a cash cow for parents who were teaching their kids to “act crazy,” was slashed. [page]

It isn't the first time. Because when it comes to kicking the down and out, disabled kids have been a favorite Washington target for a long time.

The Supplemental Security Income program was established in 1972 as a means to provide money to the impoverished, aged, and disabled. The idea that no one in this country should starve amid plenty was once in fashion, and Congress discovered that people incapable of supporting themselves due to advanced years or physical and mental impairments were not being taken care of. Technically, SSI is a welfare program, as it is means-tested, or based on need. But while it is possible to measure a person's income objectively, measuring infirmity or instability is not so simple. And right from the start, disabled children in poor families — perhaps the most vulnerable of all Americans — have had a tough time getting in.

At the program's outset, SSI applicants had to show they suffered from one of a number of specific ailments enumerated in what came to be known as “The Listings,” a detailed document that itemized the woes deemed to be bad enough to land a government check in your mailbox. As initially written, The Listings contained few childhood diseases at all; most of the qualifying infirmities were adult afflictions. In addition, adults had the option of trying to prove they were so impaired they couldn't work, even if they didn't exactly fit a specific listing.

Children were forced to follow the same formula: They had to be either disabled in a way that matched the adult listings or functionally incapable in a way that, if they were adults themselves, they wouldn't be able to work. Sound confusing? It was, and the government decided to settle the confusion by issuing near-blanket refusals. “Children made up only 9 percent of the SSI population,” says Barbara Bergstrom, an S.F. attorney specializing in Social Security benefits. Factor in the Reagan administration's generally dim view of social programs, which was ascendant in the early 1980s, and the SSI program became markedly off-limits to kids.

So much so, in fact, that the Supreme Court stepped in to turn administration of the program around.

In 1983, the parents of a Philadelphia child named Brian Zebley sued the federal government, saying their son — brain-damaged at birth — had been illegally dropped from SSI the previous year. Finally, in 1990, the Supreme Court declared that the Social Security Administration had illegally denied aid not just to Brian, but to countless disabled poor children. The court instructed the government to come up with new eligibility rules.

In complying, the Social Security Administration added a measurement tool called the “individualized functional assessment” (IFA), which took into account a child's total behavior. (The new rule's full text was made up of the 26 words referred to in the Woodward/Weiser Post piece.) This was when the SSI rolls swelled, from 300,000 kids in 1990 to nearly 1 million five years later — many of whom found out about SSI through government-financed outreach projects. Each family received about $6,000 a year per child from SSI, with no specific strings on how the money should be spent.

What the IFA allowed for was consideration of the cumulative effect of a child's impairments. Taken singly, as The Listings required, each factor might not be enough to qualify for aid; taken together, perhaps, they might. Thus, a child with a low IQ, impaired motor functioning, and a tendency toward hurting animals might get SSI, whereas pre-Zebley, he would not have.

“It was a much, much more flexible and all-inclusive standard,” says Rachel Shigekane, managing attorney for the Volunteer Legal Services Project of the Bar Association, where she heads up a project on children's SSI benefits.

But now, Congress has tossed Zebley out the door — and the IFA with it. Under the changes made last summer, it drastically tightened eligibility in two simple steps: banning the use of the IFA and prohibiting any consideration of “maladaptive behavior.”

The last might sound technical, but it's not. Maladaptive behavior is a broad spectrum, and it includes setting fires, hitting people, and hurting animals, Shigekane says. Congress professed concern that simply setting a kitten aflame could qualify a child for free government bucks.

By eliminating the IFA and maladaptive behavior as qualifying criteria, Congress quickly and strictly limited access to the program for children with mental impairments and emotional illnesses. The truants, the delinquents, the violent, and the sad, the reasoning went, were on their own. After all, can't they just sit down and shut up like everyone else?

“In the past, children were compared to other children of their age and how they functioned in school. How they behaved was all part of the way we looked at that,” says Lowell Kepke of the Social Security Administration. “Now there will have to be more specific medical evidence for a child to be disabled. Their behavior alone won't qualify.”

Or, as Lois Jones, director of Parents Helping Parents puts it: “The kids in the wheelchairs, blind and deaf, are still going to get their checks. Kids who behave differently for whatever reason will not. And nobody talks about these kids.”

When the Social Security Administration looked through its roster last November and started sending out redetermination letters, the families who got them — in the mailbox during Thanksgiving week, by the way — were those whose children had qualified for SSI through the IFA or with the consideration of maladaptive behavior.

It was, of course, arbitrary — casting suspicion on 30 percent of SSI children because of the sins of a few families. Adding to the arbitrariness, no one knew precisely who might be affected by the changed regulations. Congress had left it up to the Clinton administration to figure out who would be cut. Speculation abounded, with some advocates predicting the worst and some hoping that no more than 10 percent of children — the fewest possible under Congress' new parameters. The new rules were due in November, but weren't actually promulgated until Feb. 6. [page]

“That is an indication of how hard it is to write the rules in a way that meets the definition of the law and is still fair to the families,” says Kepke, of the Social Security Administration.

“Part of the problem is that SSA was given so little time to write the new regulations. They had to get rid of the individualized functional assessment, and it's almost impossible to replace that in three months,” says Ford, of the Arc in Washington.

According to the Social Security Administration's budget-day pronouncements last week, some 135,000 children (about 15 percent of the pool) will be affected by the new regs. Children with hard-and-fast medical diagnoses, including cerebral palsy and, probably, autism, will be spared; kids with emotional or mental difficulties, however, are in danger of being denied.

Child advocates like Alice Bussiere at the National Center for Youth Law are scrambling now to analyze the effect that the just-issued regulations will have. Which is what everyone's doing. Of major concern is the link between SSI and Medicaid, which is called Medi-Cal in California. A child who is SSI-eligible automatically becomes eligible for Medi-Cal. Parents use the Medi-Cal access for treatment and drugs, including experimental ones, to help their children.

Among the other unanswered questions:
Will a child kicked out of SSI still qualify for Medi-Cal? “That's uncertain,” says Sarah Ecker, a budget specialist in the San Francisco Health Department. What happens if a child cut from SSI and Medi-Cal needs public-assistance money? Does the state or the city step in? Where would that money come from? What if there simply isn't any money? Will foster-care programs be available to children whose parents cannot afford to keep them at home? What about public housing for those parents who have used SSI to pay rent? Will the city be willing or able to make up the difference? If not, then what happens?

“We're still trying to figure that out,” says John Madden, of the San Francisco Controller's Office. “You never know how it's going to manifest itself in terms of the city. It isn't axiomatic that if you drop one kind of aid that somebody automatically falls into another category.”

The questions are real. Telling a child that he's no longer disabled does not, unfortunately, cure his problems. Nor does cutting off federal funds solve a family's fiscal crisis.

And there's that hunger thing again. They might have been cutting pork in Washington, but it's down to flesh and bone out here.

“I just sent back my questionnaire,” Gail is saying. “I built it out very literally. I just wanted to describe Lawrence's day.”

Perhaps ironically, Gail is not against welfare reform. She doesn't even object to the redetermination process she and her son are embarking on. She just wishes it were being done with a little more exactitude. Perhaps, even, with a little more heart.

“It felt so impersonal,” Gail says of the questionnaire. “You're trying to save your soul basically by writing your soul down on a piece of paper to reflect the urgency of what you're saying.”

The SSI money Lawrence gets — some $547 a month — pays for rent and sports, the one thing that the child loves. “Sports is it,” Gail says. “But soccer, swimming — these things cost money. Even at the Boys and Girls clubs they want you to pay for the uniforms.”

“If they interviewed my child, they could definitely see,” she continues. “If they did it on a family-by-family basis interviewing families that are involved personally, it would seem more justifiably fair.”

But the world isn't a fair place. And Gail waits to find out what the future holds for herself and her son. When the redetermination letter arrived, “my first thought was, 'How am I going to afford my rent?' ”

The first thought, but not the last. In the tidy apartment where Lawrence, laughing and full of energy, is watching his pet turtle crawl on his arm, Gail says she won't stop advocating for herself and others. That's what the government seems to have forgotten, she believes. “Do they think these mothers care less for their children because they're poor?” she asks.

“I had a lot of doors shut in my face, but I didn't let that stop me. I've been called nigger, but it didn't affect me very much. I had a multiracial family, and we were taught if you discriminate against someone you're discriminating against yourself. Spirituality goes hand in hand with that. Also education.” She pauses.

“This whole SSI thing? If they take it away, I'll just have to find another way to make it.” But just how she'll do that is not, at this moment, clear.

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