Wall Street Journal - October 1, 1997
Christopher Georges

"I am not getting the picture of a sickly child," says Mrs. Smith, a state welfare official, as she tries to decide whether to cut off the boy's $450-a-month disability benefits under the new federal welfare law. But she lingers over the case. The child is HIV-positive. He has bouts of fatigue, a meager appetite and occasional infections, though none severe.

On another day she picks through the file on an 11-year-old boy who, his parents say, is "verbally abusive" and "gets phone messages wrong." He plays sports. He is strong enough to beat up classmates. His IQ is 83, above the 69 score that generally is considered a cutoff for being severely disabled. But she pulls out other clues: He tests at first-grade level, can't write, has a short attention span, suffered brain damage at birth and sometimes climbs ledges, threatening to jump.

In the end, Mrs. Smith will decide that one of these two youngsters will join the 125,000 children nationwide who this year are being cut off from disability benefits, also known as Supplemental Security Income or SSI. Congress concluded last year that many of the nearly one million children getting benefits -- which are based on the family's income and the child's disability -- suffered from mild ailments, if any. As part of the broader welfare overhaul, legislators cut $8 billion over six years from the $10 billion-a-year program.

Congress ordered caseworkers to continue aid only to children with "marked and severe" disabilities. But it left it to the Social Security Administration to decide what that meant. Three dozen top administration officials wrestled for months with the issue last fall. "What is `marked' limitation anyway?" asks Susan Daniels, who heads Social Security's disability program. "We can't look at a child and say, `We have a marked one here.'"

The agency eventually wrote a complex web of standards aimed at calibrating how children behave and feel. Officials pinpointed 265,000 recipients as the least disabled, and about half of these are likely to be cut off by February. But the real-life decisions on which children will keep their aid, or lose it, are up to the Sandy Smiths in state agencies across the country.

Mrs. Smith, 46, was working as a pediatric nurse when she heard last winter that the state was looking for people -- particularly nurses -- to make SSI decisions. She was intrigued by the challenges of the job and welcomed the regular hours. She works in a cubicle, surrounded by pictures of her own three grown children -- one of whom has attention-deficit disorder.

Her decisions underscore the tensions in carrying out welfare reform and provide an early clue to the impact of the new law. Are officials such as Mrs. Smith stranding the disabled, as advocates for the poor claim, or are they cleaning up a program pockmarked by abuse?

Some calls are easy. Children with severe mental retardation or cerebral palsy won't be cut off. Kids whose only trouble is an eagerness to pummel classmates probably will lose benefits. But not all cases are so simple -- to decide or to live with. "I have a heart. I sympathize. But the bottom line is the law," says Mark Gordon, a New York caseworker who has judged hundreds of the state's 26,000 disability review cases over the past few months. "I can feel sorry, but that is not my job."

Those who enforce the new guidelines acknowledge the difficulties in applying textbook rules -- found in a 160-page SSI handbook -- to children such as Mrs. Smith's HIV-positive case. These cases are presented within thick binders of parents' pleas, lab results, doctors' reports and teachers' opinions. Some of the data are conflicting, others irrelevant.

Mrs. Smith's introduction to the HIV-positive child is a simple request, penned in an unsteady hand by the boy's mother: "My child is disabled." Mrs. Smith searches thoroughly to dig out proof of a severe case of AIDS. But other factors can help win approval, such as evidence that the boy is thinking, speaking or hearing far below his age level.

The search begins: The youngster has "speech delays" and trouble in school, his mother says. But as Mrs. Smith digs deeper, the evidence is contradictory. A recent language test shows him just below age level, and his IQ is 25 points above the usual cutoff. A teacher's report notes a poor attention span, but Mrs. Smith puts that aside: "If it were severe, he wouldn't be able to sit still at all," she says.

Soon, her options have dwindled to one: How severe is his disease? A doctor's report notes aching knuckles and a regimen of AZT. A teacher reports the boy tires easily. But Mrs. Smith searches in vain for evidence that he must leave school early or even be excused to nap.

Suddenly, her interest is piqued by medical records showing he is small for his age. "Could be `failure to thrive,'" she says, reaching for a binder of growth charts. She must prove not only that he is small, but that he is growing at a slower-than-normal rate.

What Mrs. Smith does not -- in fact, may not -- factor into the decision are the child's financial situation and family history. That point is the topic of conversation as Mrs. Smith joins a dozen colleagues over pizza and soft drinks in the office common area. Most agree that not using such data can make a tough decision tougher, but doesn't lead to a "wrong" evaluation. "If something is going on with the family, it will be dealt with elsewhere," says Mark Diefendorf, who runs the Binghamton office. "It's a big system. We are just one part."

In this case, though, Mrs. Smith ventures into the back of the file where income data and family history are found. The boy's mother, HIV-positive herself, lost her son to foster care when he was two, the record reports. But two years later she won a battle to get back custody. She has been through rehabilitation of some sort, and on and off public assistance.

"She's finally pulling it together. I think she's doing a good job," Mrs. Smith says. Still, "none of this will make a difference," she says, flipping back to front of the folder.

During the past few weeks, Mrs. Smith has cut off dozens of children. She tempers the strain by reconciling her professional task with her personal values. "This is good for them," she says, describing those who are cut. "We are helping these children become self-supporting human beings. We hamstring them when we tell them they have a severe disability." She explains further: "I would never say to my child, `You are disabled.'"

And she hasn't. Her teenage son was diagnosed with attention-deficit disorder in grade school, attended special-education classes but received little other special treatment. "He adjusted," she says, and he is now training to be a chef.

For Mrs. Smith and her colleagues, emotional distance is made easier by a physical one. She reviews each case from her Binghamton office, hundreds of miles from where many of the children live. She never sees or talks to the children or their families.

But Mrs. Smith is also helped by her skeptical view of the old standards. Delving into the back files of a boy with attention-deficit disorder, she plucks evidence used three years ago to allow the child to get benefits. A teacher wrote that the child "longs for praise and attention.... He asks to sit on my lap."

"Come on," Mrs. Smith says, "some of these kids needs just a little handholding."

To date, most cutoffs, in New York and nationwide, have affected children claiming learning disorders, especially attention-deficit disorder. The decisions have touched off protests from advocates who say that the new guidelines are too strict and that determiners, pressured by tight deadlines, are conducting cursory reviews. "The SSI killing fields are upon us," says Jonathan Stein, of Philadelphia's Community Legal Services, an advocacy group for the disabled.

Mr. Stein and others have collected a handful of questionable denials, such as a 13-year-old girl diagnosed as having severe psychotic disorders. But it isn't clear whether such decisions are widespread or isolated. Still, Social Security officials concede some mistakes and have promised to review the regulations. Cutoffs can be appealed to other officials, or a judge. Of the nearly 2,700 cases nationwide that have been reassessed at any level so far, 1,750 children have been allowed back on the rolls.

Officials recently cut benefits for a boy who lives just a few miles from Mrs. Smith's HIV case. Samuel is also in elementary school, has roughly the same family income and an almost identical medical condition. After his first day of school, Samuel tangles playfully with classmates. The boy, mixing into the sea of children, is dressed smartly in a new denim outfit and Nikes. He is taking protease inhibitors, courtesy of Medicaid and a local hospital, and his HIV-positive condition remains a secret to his teachers, classmates, even some relatives. Samuel himself is unaware.

Later he will ride his bike and then take on the miniature basketball hoop in his basement. Medical records show he tests near his age level in such skills as coordination, speech and hearing. The boy has "no limitations," his doctor reports in the case file.

But his grandmother fiercely defends the $507 monthly disability check, citing circumstances absent from Samuel's medical file. His mother, a cocaine addict now in prison, and his father, a recovering alcoholic, essentially abandoned the child at birth to her. Samuel appears healthy, she insists, only because she quit her clerical job to become a full-time mother again. She is a slave to her grandson's on-demand eating habits. Morning and evening medications require her to coax Samuel from hiding in his room.

When officials cut off Samuel's SSI a few weeks ago (Mrs. Smith wasn't involved in the case), his grandmother appealed. A judge reversed the decision.

In another case, Maria Lugo recently received a letter saying that her teenage son had been cut off after 11 years of aid. Ms. Lugo, who says she receives adult SSI for depression, makes no effort to hide her anger: The boy "is emotionally in trouble. He can hurt someone," she explains.

Her son isn't home to hear the news, but will soon return from a vacation in England, paid for by his mother. Though he holds a part-time job in a sporting-goods store, scuba dives and attends regular school classes, his mother defends the aid, citing her son's violent temper. "We need to buy him things to keep him calm," she explains, listing some of the placating devices: a computer, CB radio and "laser-beam toys to play with his friends."

But a few weeks later, Ms. Lugo has calmed. "I guess he's OK," she says, adding she won't appeal the decision.

Mrs. Smith also wasn't involved in that case, but she uses similar standards. She examines a new file of a 12-year-old boy whose parents say he suffers from attention-deficit disorder and "mental problems." He takes Ritalin and gets weekly psychiatric counseling. "He cannot finish a task without supervision," they explain.

"This one looks serious," Mrs. Smith says, then reads further. "He is argumentative ...aggressive ...rude and disrespectful," the government-hired psychiatrist reports after a visit from the child. That still isn't enough to merit "severe," Mrs. Smith says.

Finally, the school report provides the telling evidence: In the past year, he has jumped three grade levels in his test scores; his IQ is 78, well above the cutoff for disability. She looks up from the paperwork and reads the teacher's notes aloud, running her finger along the line: "He gets things done on time.... He thinks creatively."

A new picture has emerged. The teacher reports that the child's medication controls his violent impulses. He "is beginning to connect -- he's compensating," Mrs. Smith says. "He may not be a rocket scientist, but he'll be fine." She decides to end his SSI.

Each case is a challenge. The 11-year-old who "gets phone messages wrong" and is "verbally abusive" appears headed for cessation. His father cites fetal-alcohol syndrome but provides no clue that it is severe. The boy takes no medications, and although he picks fights, the new guidelines no longer regard that as a criterion for aid.

But despite his IQ of 83, the boy tests in most areas at first-grade level. He still can't read or write. "This is more than just slow," Mrs. Smith says. "It's a marked disorder," giving him credit for one disability. But the new rules require another area of severe disability. Although reluctant at first to judge his temper a disorder, Mrs. Smith is moved by, among other evidence, a school report that he "terrorizes his teachers."

"This child is going backward," she concludes. She allows his disability checks to continue.

The dilemma remains over her HIV case. The growth charts she turned to show that this boy, though small for his age, is growing at a normal rate. Yes, he carries the virus, but, she says, pausing between each word for emphasis, "he is totally asymptomatic." She cuts off the benefits, effective today.

The case is through, but Mrs. Smith isn't. "There are all kinds of programs, free ones, that can help," she says. The boy will continue to get Medicaid and probably other social services. "If he gets sicker, they can reapply," she says.

"Maybe," she says pausing, "if his IQ were lower ...I could have . . .," her voice trailing off. "He definitely has disability," she says, "but I couldn't say he is disabled."

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