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"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.
