The 4-year-old southwest Baltimore boy wears a backpack wherever he goes. The backpack contains a package of special food and a feeding tube, the only way he can eat.
The diagnosis is gastroesophageal reflux, complicated by chronic pulmonary disease. Or, as his grandmother says: "He can't keep his food down. And he gets pneumonia."
As a result, the boy is developmentally disabled, with some speech and behavior problems. But almost three years ago, when his grandmother requested Social Security Income (SSI) for him, the federal agency ruled he was ineligible under the current regulations, which dictated that only certain illnesses entitle a child to SSI.
He simply didn't have one of the illnesses on the list that also excluded Down's syndrome, autism, muscular dystrophy and AIDS.
"He had all these serious problems, but he didn't fit in," said Ethel Zelenske, a Legal Aid attorney who has been handling SSI cases such as this for 13 years. "There wasn't any way he could win under the old standards."
The boy -- his grandmother asked that his name be withheld -- is one of 4,029 Maryland children who may be eligible for back benefits as a result of a Supreme Court ruling in a class action suit, Sullivan v. Zebley.
Today, the federal government was to start mailing notification letters to the family of any child denied SSI from Jan. 1, 1980, through Feb. 27, 1990. These families then will have 120 days to request new hearings in their cases.
Nationwide, there are 452,000 cases affected by the ruling. The Supreme Court ruled that children, like adults, must be evaluated individually for SSI, not according to a set list. Any child who was denied could claim benefits retroactive to the date of the original decision.
Some children may collect lump sums of more than $40,000. Adults who were denied benefits as children also may collect. Overall, the Social Security Administration estimates it will pay out $2 billion in back benefits, as well as $1 billion in Medicaid payments.
In addition, about 60,000 children who were denied benefits under the interim rules of Feb. 28, 1990, through Feb. 11, 1991, will have their cases reviewed automatically.
"It's a massive undertaking," said Rhoda Schulzinger, a staff attorney at the Washington, D.C.-based Mental Health Law Project.
For advocates such as Schulzinger, the fear is that the federal government will not be able to find some of the children originally denied benefits. Her agency plans to use the most current addresses on its computer tapes, as well as working with local governments and non-profit agencies. Families who are difficult to find will be given an additional 120 days to apply.
Some families still may be denied benefits, Zelenske said. But under the new standards, about 68 percent of Maryland cases are ruled eligible.
"For kids that have already been found disabled [since the standards changed in 1990], Social Security is not going to reinvent the wheel," she said. "They're going to use the presumption that the child was disabled as of the first application."
That's good news for the 4-year-old southwest Baltimore boy, who was found eligible under the interim standards last summer. The boy, who already has received one small lump sum, now can expect about 18 months of benefits, totaling more than $7,200.