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Benefits for Families of Disabled Children Retooled

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It is complaints like Willie Lee Bell's that Congress is responding to with its efforts to rework a federal program that provides cash benefits to low-income families with disabled children.

But a benefit that educators such as Mr. Bell view as an incentive for children to fail in school can also be the support system that allows a family to keep a child out of an institution, disability-rights advocates argue.

Mr. Bell, the principal of Southside Elementary School in impoverished Lake Providence, La., contends that parents are instructing their children to act up in his school or fail tests in order to try to qualify for the Supplemental Security Income program, which offers families up to $458 a month per child. The Social Security Administration, which runs the program, often calls on schools to provide information about a child's academic performance and behavior to help decide whether to grant the child benefits.

"My kids just aren't trying anymore," Mr. Bell said after testifying at a recent hearing here. "Parents say, 'Look, just fill out the form this way and help me out.' The word is out."

Mr. Bell's comments are part of a litany of highly publicized charges of fraud and abuse that have been leveled in the past year against the $4.5 billion S.S.I. children's program. Those charges--which include reports of parents buying things such as cars and television sets with their grants--have helped drive the proposal to overhaul the S.S.I. program that is included in the welfare-reform bill the House was expected to pass late last week. (See related story .)

Probes by the Social Security Administration and the inspector general of the Health and Human Services Department found no confirmed cases of coaching. (See related(See Education Week, 6/1/94.

A General Accounting Office report released this month said the charges are "almost impossible to substantiate."

Pending Overhaul

But many Republican lawmakers say the coaching allegations have exposed flaws in the program, which serves nearly 900,000 children.

HR 1214, the House welfare-reform bill, includes provisions that would toughen S.S.I. eligibility requirements and severely restrict the number of children who can receive cash. Many children would be eligible instead for services provided through a state-run block grant, while others would be dropped from the rolls entirely. (See Education Week, 2/22/95.)

The Senate plans to hold S.S.I. hearings later this month and is expected to move more slowly than the House.

Meanwhile, the National Commission on Childhood Disability, which Congress created last year to assess the S.S.I. program, is grappling with the same issues. The panel has begun hearings and plans to issue recommendations by July.

Supporters of the program call it a vital lifeline for low-income families struggling to support their disabled children, whose everyday needs are often expensive.

Critics say the program was born with an identity crisis and has mushroomed to include too many children with less severe disabilities. The cash is too easily misused, they say.

An Afterthought

According to many observers, provisions about children were tacked on as an afterthought when the S.S.I. program was created to serve the blind, disabled, and elderly in 1972.

"There wasn't a lot of description of what Congress intended for children," said Barry Eigen, a deputy director in the Social Security agency's office of disability. "It was ill-defined from the outset."

Adults qualify for payments if their disabilities prevent them from working. They must either show that they suffer from one of the physical or mental impairments codified in a detailed set of regulations--known as the "listings"--or by having individual evaluations that show they are unable to work.

The law says children are deemed disabled for the purposes of the program if they have a "medically determinable physical or mental impairment of comparable severity" to those that render adults unable to work.

In 1990, the U.S. Supreme Court ruled in Sullivan v. Zebley that the Social Security Administration had improperly interpreted the law. Because adults whose ailments did not precisely match the listings could qualify by proving an inability to work, and children had no such recourse, the agency was holding children to a higher standard than adults, the Justices said.

In response, the agency devised the "individualized functional assessment," a process designed to measure whether a child's impairments "substantially reduce" his ability to perform "age appropriate" activities. It spawned an elaborate system that weighs information from medical and nonmedical sources, including teachers and parents. State disability agencies, which process applications, must judge children's limitations in areas such as cognitive ability, social skills, and concentration.

It is an unavoidably subjective process, critics say. While Social Security Administration guidelines describe age-appropriate activity, for example, they do not define what constitutes a "mild" versus a "minimal" limitation.

"There's a lot of leeway," said William F. Payne, the chief medical consultant for the Arkansas agency that reviews S.S.I. claims.

The recent G.A.O. report agreed, and urged scrapping the individualized functional assessment.

'Drawing the Line'

The House bill would do just that. It would also redefine what constitutes an eligible disability in children by striking the law's reference to "comparable severity," essentially nullifying the Zebley decision.

The vast majority of the 225,000 children who were awarded benefits through the I.F.A. process have mental disorders. Others suffer from rare physical disorders or a combination of disorders that independently do not match the medical listings' strict definitions.

About 40 percent of the children who would be dropped from the rolls because they qualified through the I.F.A. process may requalify under the listings standard, some experts estimate. Some children were accepted through an assessment simply because state reviewers could not quickly gather sufficient medical evidence to prove that their conditions matched a medical listing, Social Security officials said.

The children who have qualified to date through the listings would continue to receive cash under the House plan. But new applicants would only qualify for cash payments if they lived in a hospital or other institution or would have to be placed in such a facility were it not for ongoing "personal assistance." Other new applicants would receive services from a state-run block-grant program.

Under current law, family income determines the benefit amount, regardless of what disability a child has.

House Republican aides estimate that 30 percent of new applicants would meet the cash standard, and the Congressional Budget Office estimated that the proposed changes would save $10.9 billion over five years. But the budget office called its own estimates "extremely tenuous."

The bottom line, reform proponents say, is that the individualized functional assessment has made it too easy for children to qualify for benefits.

"You have to draw the line somewhere," said a spokesman for Rep. Jim McCrery, R-La., one of the chief authors of the S.S.I. plan. "This program has been run by advocates and the courts."

Advocates point to a different bottom line: what would happen to families that lost the cash aid.

They say the I.F.A. process should be refined, not abolished, and that it alone did not cause the number of children receiving payments to more than double from 1989 to 1993. An expansion of the mental-disorders listings and a Congressionally mandated outreach program contributed to the rise, advocates argue.

"Congress has had a knee-jerk reaction here to allegations that have never been proven," said Paul Marchand, the director of governmental affairs for The Arc, a group representing people with mental retardation. "The Republican House has multiple agendas here, including extracting savings for the purpose of deficit reduction or offsetting tax cuts."

Many observers outside Washington said they fear that families cut off from cash would seek other public assistance at a time when funding for many such programs is being cut. They fear the services to be provided through the House block-grant plan would be spread too thin and be too inflexible.

"Cash gives families a glove that fits better than services," said Brian F. Kendrick, a service coordinator at Enable, a nonprofit agency for disabled people in Syracuse, N.Y. "I'm not convinced our state bureaucracy is going to make the program any better."

'I Feel Punished'

Regulations say S.S.I. payments can be used for such purposes as food, shelter, clothing, medical care, and other items that benefit the disabled child. Parents are required to report regularly on how they spend the money.

For Vanessa Cooke, the cash buys special food and cab rides to her daughter's Philadelphia school, where Ms. Cooke is often summoned to deal with emergencies or provide 6-year-old La Shaira with injections the nurse cannot give. Ms. Cooke said she cannot work because of her daughter's health needs.

La Shaira's form of diabetes did not meet the listings' exact description. It took five years before she was awarded benefits under the I.F.A. process.

"I get so mad when people say it's so easy to qualify," Ms. Cooke said. "I feel like I'm being punished for having a disabled child."

Joanne E. Spencer of Brockton, Mass., said S.S.I. aid allows her to keep her sons out of institutions. One son has a severe muscular disorder and uses a wheelchair; the other is autistic. While her sons, like other S.S.I. recipients, are eligible for Medicaid, Ms. Spencer uses the cash to pay for things the health-care program does not cover, such as hefty electrical bills caused by feeding tubes and repairs for the computer her autistic son uses to communicate.

"These changes are scary," said Ms. Spencer, who works part time. "We wouldn't make it without the benefits."

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