"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.