New Rules Cut Disability Aid to 135,000 Children

Richard started talking about killing himself when he was 5 1/2 years old.

He was not joking. He was not being manipulative.

“I didn’t see him try to attempt it,” said Richard’s mother. “It’s just the fact that I was hearing it--that his mind was going there--that was alarming and suggested we should address it.”

Now Richard is 11, on medication for attention deficit disorder, and in therapy with a psychiatrist and a psychologist for depression. He is also one of the more than 135,000 low-income children nationwide who have received notices saying they are being cut from the disability rolls.

The terminations are a consequence of a controversial section of the 1996 federal welfare overhaul calling for a redefinition of childhood disability. In February, the Social Security Administration began a review of more than 200,000 low-income children who had been receiving monthly supplemental security income and medical benefits. Children who are judged as not meeting the new criteria are being dropped from the assistance program.

“We’re not talking about kids that suddenly got better,” said Julie Justicz, who is heading an American Bar Assn. effort to assist families nationwide in appealing the terminations. “The kids have not changed; what’s changed is the definition of disability.”

The Social Security Administration says that children who have been cut from the program are not severely disabled and that evaluations conducted in recent months have been fair.

Children’s advocates, who have been scrambling to locate and provide assistance to affected families, counter that the process is rife with problems. They are calling, along with some in Congress, for the Social Security Administration to halt its remaining reviews until the issues can be resolved.

“The first round of terminations were so shoddy and rushed and hurried, it has resulted in tens of thousands of severely disabled children being wrongly terminated in the last months,” said Philadelphia attorney Jonathan Stein, who serves as an advocate for disabled children. “I believe the evidence is in now to justify a halt and a review of these kids already cut.”

Late last month, Kenneth S. Apfel, the nominee to be director of the Social Security Administration, promised a 30-day “top-to-bottom” assessment of the reviews.

“He’s very concerned about that program and has pledged to the Senate and the nation that he will, very first thing, look at that program,” said John Trollinger, spokesman for the administration.

For families who have been terminated, the impact is already being felt. The income loss has brought a sudden change in their lives--and an uncertain future.

“This past month has been very difficult,” said Richard’s mother, who received her last monthly check for $534 in August. “Next month, it will be impossible.”

According to the Social Security Administration, of the 135,841 children who have been cut, 112,016 were classified as having a mental disorder. That category includes children with personality disorders, conduct disorders, maladaptive behavior, learning disabilities and attention deficit disorder. And 3,126 were diagnosed with a physiologically based neurological condition. In addition, 4,255 children with respiratory problems such as asthma have been dropped.

“Overall, nationally the data that we have is not surprising,” said Susan Daniels, the administration’s associate commissioner for disability. “It is right on target with the estimates that were expected.”

The new law requires that eligible children have impairments that are marked and severe.

“Many of the children have mild or moderate limitations,” Daniels said. “These children coming off the rolls are not fakers but children who [once] met a standard that is now stricter.”

Facing a Future Under New Rules

Parents like Richard’s (whose real name is being withheld by The Times) say the benefits have helped their children. Without them, they say, their children face the risk of severe reversals, and families as a whole will have little ability to support themselves.

SSI advocates say the cuts caused by the federal welfare overhaul could have the ironic effect of forcing some families who lose benefits onto welfare.

Richard’s mother knows that her son’s condition does not fit with the easy picture that comes to mind when people think of the word disability. He is not in a wheelchair or on crutches. He has no visible signs of limitations. Yet they are painfully evidenced in his life every day, and have been since kindergarten, she said.

A series of trips to medical centers led to the discovery that the boy suffers from learning disabilities and hyperactivity as well as depression.

Though the therapy and medicine have helped, Richard is still subject to bouts of depression and crying, a child for whom simple tasks are trials: learning to read, learning to control his impulses, learning to understand himself, his mother said.

Over the years, his mother has spun an intricate web of support around her son. She is a full-time homemaker and advocate, working with schools, therapists, psychologists and tutors to help him learn to navigate the world.

“The reason I’ve been able to maintain him at home is because I’ve been so aggressive” to get the support system, his mother said.

That task, coupled with the needs of her teenage daughter who is physically disabled, consumes her days. She has not worked outside the home for three years.

“I couldn’t really hold my job down because of the kids,” said the former home health care nurse. “Things became too much to handle--the doctors visits and therapy sessions and all that.”

The $534 Richard’s mother received each month paid for his daily care, for his medication, tutoring, books and other learning aides, and extracurricular activities designed to help him adjust socially. SSI also covered Richard’s appointments with physicians and psychiatrists.

Before the sixth-grader’s benefits were terminated, officials ordered his mother to take him to a psychologist for an examination that lasted “no more than 15 minutes,” she said.

“You cannot do a thorough evaluation in 15 minutes,” she said. “It’s a sham. It takes time to pick up what’s going on.”

Now she is appealing.

Since the national review began, the staff at agencies such as Protection & Advocacy on Wilshire Boulevard have been preparing to help with appeals for people like Richard’s mother. By law, no child’s benefits could be cut before July 1, but since then the advocacy group has fielded calls from scores of families who are appealing terminations, said attorney Melinda Bird. The group provides some assistance and refers many families to attorneys who offer free services or services on contingency.

Richard’s mother, who also receives about $500 a month from SSI for her daughter, will have to pay the attorney assisting her.

The appeal process is the one hope many families have for retaining benefits. But it is what distresses Bird most.

So far, of the more than 4,800 families who have lost benefits in California, fewer than 400 have appealed. “The appeal rate is so low and the success rate, if you do appeal, is so great that any incentive we can give to appeal we should.”

The number of families whose benefits are restored on appeal “show essentially how bad and in error the termination decisions have been,” advocacy attorney Stein said.

But the administration’s Daniels said the agency does not yet have enough data to reach any conclusions. “That could change dramatically,” she said.

Advocates say that key information about the appeal process is buried in the depths of termination letters, so that families may not understand that they must act quickly. According to the administration, families have 60 days to appeal a termination. But families may continue to receive benefits during the first level of appeal if they request a continuance within 10 days. Some may not read the letter thoroughly and may miss this small window, Bird said.

When Gwendolyn Law of South Los Angeles read the termination letter, she mistakenly believed it was related to her son’s placement in school. By the time the confusion was cleared, 10 days had passed.

“My son’s problems to me are severe,” said Law, who is appealing the termination. After Bird wrote a declaration to SSI explaining Law’s confusion, the boy’s benefits were restored, and will remain in place while she appeals.

In Richard’s case, his mother said the 10-day window had passed before she was able to get forms filled out by the medical personnel who had treated her son.

In a letter to Apfel, U.S. Sen. Paul Wellstone (D-Minn.) has called for a short moratorium on terminations and “an effort undertaken promptly to educate families facing a loss of benefits about their rights to appeal.”

Groups Fight to Help Parents

Along with other groups, the American Bar Assn. has requested that the Social Security Administration include with the termination letter a list of hotline numbers and legal services’ phone numbers, calling the act a “simple, fair step” that would assist families in the review process.

The administration has refused.

“What we do is offer that information when the families come in to inquire about the loss of benefits,” Trollinger said.

But parents and advocates argue that some SSI workers add to the confusion.

Advocates from across the country have collected affidavits from families who say they received inaccurate information--and often harsh treatment--from local SSI workers. The affidavits tell of workers who refused to give out the appeal form and others who told families that they would be forced to repay money received while appealing if they do not win the case, Stein said.

Rachel Shigekane of the Volunteer Legal Services Program, an arm of the ABA in San Francisco, is encouraging families to appeal. Even if a family loses the case, she points out, the administration has the option of waiving the repayment if the appeal was filed in good faith.

“When terminating a child from SSI, you’re talking about destabilizing families,” she said.

After Sally Magnuson’s son was terminated, an SSI worker told the San Francisco resident that the office would not send her an appeal form because Magnuson had no new information on the boy’s condition to support his appeal, Magnuson said.

Magnuson persisted and ultimately received the form. Her 14-year-old son has dyslexia and other learning problems.

“This whole thing has been like a shock,” Magnuson said. “They’re treating us like criminals now, and we were encouraged [in the years before the 1996 welfare law] to apply. . . . It’s demeaning.”

Children’s advocates and advocates for the poor have questioned the huge disparity in the termination rates between different states, suggesting that the law is being applied unequally.

In Mississippi, of the children whose cases have been reviewed, 82.2% have been terminated. In California, the rate is 39.7%.

“Given those discrepancies, many advocates feel Social Security should stop reviewing these cases until they figure out why,” the ABA’s Justicz said. “There’s no reason kids in Mississippi should be losing benefits at 2 1/2 times the rate of kids in Michigan.”

Daniels argued that the populations are different and those differences come into play when looking at termination rates.

“Because they’re different doesn’t mean they’re wrong,” she said. “It just means they’re different.”

What lies ahead for families like Richard’s is uncertainty. Appeals can last for up to a year. But his mother is looking even further down the road.

“I’m looking at making sure he can be functionally independent, be able to hold a job and be able to function in society and be a responsible citizen,” she said. “That’s my goal.”