NOVEMBER 18, 1997
Welfare reform is affecting disabled children, and threatening their eligibility for supplemental security income. Elizabeth Brackett of WTTW-Chicago reports.
ELIZABETH BRACKETT: Carl Jones' mother watches her son carefully as he bicycles down the block. Carl's heart surgery six years ago left him with a leaky heart valve. He tries to do everything other kids do, and that's one thing that worries his mom. She is also worried about money. Carl is one of 135,000 children across the country who have lost their eligibility for supplemental security income, or SSI, disability benefits. Her reaction when she got the letter last July saying Carl was no longer eligible for the $481 a month disability benefit:
DIANA JONES: Shock. I couldn't believe it. I called our local Social Security office down on 47th and Bishop and a lady I talked to, she said, "You got to appeal that."
ELIZABETH BRACKETT: Carl and other Chicago lost their eligibility after Congress revised guidelines for determining disability for poor children. Congressman Clay Shaw, one of the architects of welfare reform, says there was widespread abuse in the program.
REP. CLAY SHAW, (R) Florida: Well, the program was totally out of whack. We found that in one school down in Louisiana half of the students applied for SSI benefits. This is a benefit which is very simply put in place by the Congress to take care of poor disabled children. It wasn't to be paid to people who have attention deficits or people who acted weird or got bad grades.
ELIZABETH BRACKETT: The new standards are projected to save over $8 billion through the year 2002. Dr. Susan Daniels heads the disability program for the Social Security Administration.
SUSAN DANIELS, Social Security Administration: The most significant change is it--the new guidelines raise the level of severity for children who are eligible. Before these changes children who had moderate limitations in their ability to function were eligible. Now, the new language says marked and severe functional limitations. So it raises the bars, so that only children who have marked and severe function limitations are eligible.
ELIZABETH BRACKETT: The guidelines were tightened up when Congress passed the welfare reform bill, but now the advocates say the Social Security Administration has gone way beyond the intent of Congress in interpreting and administering the guidelines. Child advocate Julie Justicz is with the American Bar Association.
JULIE JUSTICZ, American Bar Association: Basic concern is that the standard has been interpreted by SSA so narrowly that it's cutting on many children who have severe physical and mental impairments, kids who need this help desperately for the extraordinary medical costs, and for food and shelter for their normal life expenses.
ELIZABETH BRACKETT: The number of children receiving SSI had more than tripled since 1990. The growth came after extensive outreach programs by SSI and a 1991 court challenge that led to less stringent eligibility standards. Despite the big increase, child advocates say the program was far from out of control.
TOM YATES, Attorney: Regardless of what happens on the SSI, you leave that kid on.
ELIZABETH BRACKETT: Attorney Tom Yates has represented thousands of children receiving SSI.
TOM YATES: We didn't see the kinds of abuse that Congress claimed was there. We thought it was a difficult program, a difficult standard to meet, and, in fact, most the kids who we represented and we thought had strong cases, more than half usually were found not disabled. It was a tough standard to meet, even before they made the changes, and now it's an even tougher standard for a child to meet.
ELIZABETH BRACKETT: Nearly 1 million children were receiving SSI disability benefits, and over one quarter of them have had their cases reviewed in the year following the passage of welfare reform.
DR. BROJENDRA AGARWALA: That is there, and the valve is leaking.
ELIZABETH BRACKETT: Diana Jones does not understand how a review of Carl's medical records could have found him ineligible. The reviews were primarily paper ones. Examiners trained by the Social Security Administration looked at each child's medical records and school records. Dr. Brojendra Agarwala sent in records for Carl. Dr. Agarwala operated on Carl in 1991 and says he will need a second surgery in the near future. He doesn't understand why Carl lost his benefits either.
DR. BROJENDRA AGARWALA: If I have to write some letters to him, I'll strongly support that he should get the benefit based on his cardiac condition.
ELIZABETH BRACKETT: Most of the children who lost their SSI benefits are children with mental disabilities, particularly learning disabilities, and attention deficit and hyperactivity disorders, or ADHD. Gracie Robinson has been receiving SSI disability benefits after she was diagnosed with dyslexia and other learning disabilities five years ago. She was in special education classes at her old school but was put in a regular 6th grade class when she transferred to a different Chicago public school this fall. The teacher says she does have problems learning.
ANNIE JOYCE ENGLISH, Teacher: She was really bad when she came in. She did not even know how to use guide words in a dictionary. And those she didn't do anyway because she said it was too hard. You know, and when I looked at her work, it looked somebody--you know--first grade or second grade or somebody had done it.
ELIZABETH BRACKETT: Betty Robinson was encouraged to apply for SSI benefits for Gracie when her daughter first entered school. But now with the new standards even she's not sure if her daughter is still eligible.
BETTY ROBINSON: Truthfully, from what they're sayin' they only qualify if you blind, if you hurt--your legs ain't workin' or something--she don't have them disabilities, she's not like that, so I figure, no. I don't think so--she is qualified. I don't think she's qualified ‘cause she can--she can walk; she can talk; she can see; she can play--just like all the other kids--just she has a learnin' disability.
SUSAN DANIELS: Under the new standards the milder forms of mental impairment children, some children with some kinds of learning disabilities, with some kinds of attention deficit disorders, milder versions of these lesser severity type mental impairments are no longer eligible.
ELIZABETH BRACKETT: Dr. Bennet Leventhal is a director of child and adolescent psychiatry and chairman of the Department of Psychiatry at the University of Chicago. He says the cuts reflect a societal bias and a lack of understanding against mental disorders.
ELIZABETH BRACKETT: The biggest questions seem to be involving ADHD and disruptive behavior disorders. Why are those disabilities?
DR. BENNET LEVENTHAL, University of Chicago: Well, because they're real diseases, and we now have more than ample evidence to suggest that there are things fundamentally wrong with the brains of individuals who have these disorders when they're properly diagnosed. We'd like to see them as disorders of parenting because that's our bias. If only you'd be tougher on that child, they'd pay attention. But you ask any parent who has an ADHD child how tough they've tried to parent their kids, and they work their fingers to the bone and still can't fix ‘em. They need medical help. They need other kinds of help, and that's what SSI is for.
ELIZABETH BRACKETT: But Congressman Shaw says those medical needs can be covered by Medicaid.
REP. CLAY SHAW: Children that would qualify for SSI do qualify for Medicaid, which means that they will get the medical attention that they need. But to pay the families almost $450 a month just simply because they have a youngster with an attention disorder just doesn't make any sense at all.
ELIZABETH BRACKETT: Advocates say what doesn't make sense is the wide disparity in the way the states are administering the program. Termination rates range from 81 percent in Mississippi to 35 percent in Michigan.
TOM YATES: There's differences in the way that different states have applied the standard, so depending on where a child lives, that child may be found disabled or not.
ELIZABETH BRACKETT: Social Security says the disparity isn't surprising, given the differences in both the poverty rates and the numbers of children states qualified under the old, less restrictive standards. Families with children who lose benefits are being urged to appeal the decision both by the Social Security Administration and by advocacy groups. The American Bar Association produced this commercial.
COMMERCIAL SPOKESMAN: Call your local legal services, or local bar association for legal assistance with children's SSI appeals. This is one fight you don't have to face alone.
ELIZABETH BRACKETT: Families have 60 days to appeal. But if they appeal within 10 days from the time they got their cutoff notice--like Diana Jones did--they will still receive benefits while their appeal is pending, but they may be asked to pay the money back if they lose the appeal.
SUSAN DANIELS: You are asked to repay the benefits but if you can't repay it because you need your family income for your family, that is, if you don't have the resources to repay it, you can ask for a waiver.
ELIZABETH BRACKETT: Advocates say the appeal process is confusing, and, as a result, only about 40 percent of those cut off have appealed. Jones says she doesn't know how she will manage if she loses her appeal.
DIANA JONES: If we don't have that, we'll be homeless, to put it frankly, we'll be homeless. If I didn't get that check on October 1st, I couldn't have paid rent, couldn't have paid the phone bill.
ELIZABETH BRACKETT: Jones gets $119 a month from public aid, and that amount would increase if Carl remains ineligible for SSI. But her public aid benefit would not equal Carl's SSI check, and with welfare reform, Jones would have to go to work within the next two years, something she says she can't do because of Carl's needs and her own poor health. But Shaw says the program was never meant to supplement poor people's incomes. It was meant to aid families with children with severe disabilities.
REP. CLAY SHAW: There is a great deal of pressure to change these guidelines by some advocate groups. Most of these groups make their money on taking--on looking after issues and looking for issues like this that they can jump on. But when you see that out of a million that only a hundred and thirty-five thousand kids were removed from the roles and that some of those are going through the appellate process and being put back on, then you can see that the program is working, and it is doing--we did the right thing. The administration is doing the right thing, and I certainly hope they stay the course.
ELIZABETH BRACKETT: A course advocates are working hard to change.
JULIE JUSTICZ: I think the public has been dismayed to hear in the news that many families who have kids with severe disabilities are losing benefits. I don't think this is what the American public wants. I don't think it's what Congress intended, and I think Social Security is seeing all the evidence of that now and needs to make some changes.
ELIZABETH BRACKETT: The Social Security Administration has agreed to review the program. The results of that review should be announced shortly.