Human Rights
Volume 25
Number 1
Winter 1998
SSI Families Say They Are Too Frightened and Intimidated to Challenge Funding Cutoffs for Disabled Children
"They made me feel like garbage," said the mother of a disabled seven-year-old Southside Chicago boy about her recent visit to her local Social Security Administration office. "I am a strong woman and I have lots of support, but I almost called the next day to cancel my appeal."Amie is one of the more than 128,000 parents and guardians nationally who have been notified by the SSA that their children are no longer eligible for Supplemental Security Income (SSI) under new and more stringent guidelines outlined under welfare reform.
She is the guardian of Brandon, who suffers from multiple disabilities and was abandoned by his real mother four days after she gave birth and brought him home from the hospital. He receives $484 in SSI funds monthly. Without this money, which does not cover all his medical expenses or the cost of food and shelter, Brandon might not be able to remain in the only home he has ever known.
Amie describes her experience at the SSA office as "horrendous."
"They make you feel as if you're less of a person -- as if you are taking their money out of their pocket," she said. "By the time I was through with that interview, and the way the interviewer spoke down to me and asked me questions like: What do you need the money for?-- I walked away from his desk and I actually thought maybe tomorrow I better just call and tell them to forget it all."
To assist families like Amie and Brandon, the American Bar Association, state and local bar associations and community legal offices are organizing pro bono groups all across the country. Julie Justicz, director of the ABA Children's SSI Project, predicts that at least half could win their appeal with legal representation.
Nationally, children's advocates are alarmed about the number of children with disabilities eliminated from the SSI program. Many of these children now might have to be placed in nursing homes or institutions because their parents might no longer able to care for them, they say. Advocates are equally alarmed that large number of SSI families are not appealing and that many of the SSI families are not receiving benefits during the lengthy appeal process, as is their legal right.
At South Brooklyn Legal Services' office, Lee Ginsburg said the cases are not there. "We cover half of Brooklyn and we should have a lot more cases, and that's a real problem," he said. "People are getting misinformation from the SSA offices," he said, "and that's another problem."
In a letter dated Sept. 4, ABA President Jerome Shestack asked Acting SSA Commissioner John Callahan to include telephone numbers of local pro bono legal groups with each new termination notice, and to mail these numbers to all previous recipients of these notifications.
Some SSA offices do give recipients SSA's 800 information number, which is difficult to reach sometimes. Many lawyers report their SSI clients have received misinformation or hostile operators when someone does answer.
In a quirk of the system, SSI families must ask within 10 days for funding to continue during the appeals process, and that same notification letter warns of possible repayment. "The caseworkers are telling them if you lose the appeal you will have to pay the money back. A number of people have told us that," Ginsburg said.
The prospect of repayment is frightening, and all but impossible, to the financially-strapped SSI families. Ginsburg added that impoverished SSI families, who had to prove they have a low income and resources of less than $3,000 to qualify originally, are not informed of a repayment waiver.
At one Philadelphia SSA office, an SSI mother was told: "You will have to pay it back. The government will hound you until you pay it back." Another guardian, who is also disabled, was falsely informed that the government could reclaim the money from his disability check. And yet another mother said the claims officer yelled at her: "The money is not free....you have to pay it back."
"I was so angry, but tried not to show it. I was being screamed at, everyone heard. They did not treat me like a person, they treated me like a child." She appealed anyway.
Amie and the other parents are not isolated cases of intimidation, according to lawyers attempting to help SSI families. They strongly urge SSI familes to use the free legal help to appeal.
"We know there is an incredible amount of confusion. I tell the families to have their benefits continued," said Ginsburg. "Some of them do, but in the case of the vast majority -- they don't understand the SSA notification letters, which are not clear. A high percentage are not able to read or speak English and the notices are not going out in Spanish or any other language."
Ginsburg said he does not understand the wide variance in discontinuances ranging from a low of 38 percent in Minnesota to a high of almost 83 percent in Mississippi. "That doesn't make sense. There obviously is a problem." Another lawyer observes there is a high reversal rate of initial decisions--67 percent--at the second stage of appeal. That is unusual and signals a problem, he said.
Amie, whose appeal is being handled by the SSI Coalition for a Responsible Safety Net in Chicago, said the real issue is the children.
"This is a seven-year-old boy, who's been through a horrendous life, and now they're asking him to make his life even less than what it is already," Amie said. "It's not his fault. It's not like his money is sending him to Disney World or summer camp. It's not.
"My little boy deserves the little money the government, his government sends him. Just because he's seven doesn't mean he is not a citizen of this country, and that's how they treat the children, like they no longer exist, they are not important.
"He might not be important at seven, but I bet he'll suddenly become important in 11 years when he's 18 and voting," she said of Brandon, who was never expected to reach seven due to his disabilities.
. Other SSI parents with children, who receive medical attention at the same facility Brandon does, are not appealing despite Amie's urging. They are scared, she said frankly. "If we don't advocate for our children, nobody will," she said. "The Social Security wants to be the big bad wolf and scare you away."
She encouraged SSI families to take advantage of the free legal help to understand the confusing SSA regulations.
"I don't have to fight for Brandon alone anymore. We have to let the government know that the children of American are not going to be abused or tortured. Torture is actually a very good word, because could you imagine what it would be like to tell Brandon I can't take care of him any more?" she said tearfully and paused. She hugged Brandon and told him to disregard what she had just said. "That's just grown-up talk," she explained.