Disability program, concerns on rise

SSI youth benefits draw more fire

By Patricia Wen
Globe Staff / July 11, 2011

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A federally run children’s disability program whose enrollment practices are already the subject of a congressional investigation grew by 3 percent over the past year and is now estimated to cost about $10.3 billion annually.

Statistics released last week by the Social Security Administration, at the request of The Boston Globe, showed that at the end of last year, 1.24 million indigent children received up to $700 a month in cash benefits from its children’s Supplemental Security Income (SSI) program, compared with slightly fewer than 1.2 million recipients the year before. The youngsters who qualify based on behavioral, mental, or learning disorders grew by 7.2 percent, more than twice the overall rate, and represent 55 percent of all children’s SSI cases.

The two largest mental impairment categories - attention-deficit hyperactivity disorder and speech delay - grew by 6 and 12 percent, respectively. The third-largest such category is children who qualified based on autism spectrum disorder, and that grew by 13 percent in the past year.

US Representative Richard Neal, a Democrat from Springfield and an outspoken critic of the program, said the new data reinforce his belief that the children’s SSI program, although it helps many low-income families who have children with serious impairments, may be evolving into a loosely run alternative welfare system. He said veteran school officials in Springfield and other poor urban areas continue to complain to him that many indigent families face incentives to label their children disabled, or to put them on psychotropic drugs, “simply to secure the benefits.’’

Earlier this year, in response to a three-part Globe series on the program, Neal joined Senator Scott Brown and a top member of the US House Ways and Means Committee in calling for an investigation by the Government Accountability Office, the investigative arm of Congress. A full report may be ready this year.

The commissioner of the Social Security Administration, Michael Astrue, in a meeting with the Globe in late May, described the children’s SSI program as seriously flawed and urged Congress to fund a proposed $10 million study by the Institute of Medicine, the nonprofit health research branch of the National Academy of Sciences.

“I continue to believe the evidence that has been uncovered demands that the Institute of Medicine undergo a careful analysis,’’ said Neal, who has also called for a public hearing.

The Globe series last December showed soaring rates of children with behavioral, mental, and learning disorders in the program, which began in 1972 largely to serve children with congenital and physical disabilities, such as cerebral palsy and Down syndrome.

In 1990, for instance, 8.3 percent of all children’s SSI cases were for behavioral, mental, or learning disabilities. In 1995, they were 24 percent of all cases. Now they account for more than half. The series also showed, among other things, how the program has become increasingly lax in checking on whether children no longer qualify because their conditions have improved, and has caused many teenagers on SSI to turn down part-time jobs for fear they will jeopardize their SSI benefits.

Meanwhile, the investigations in Congress have caused deep concern among some powerful disability and mental health groups, which have met with federal officials to discuss the program. They worry that the 39-year-old program will be gutted, particularly in today’s budget-cutting times.

They also have flashbacks to the mid-1990s, when the program was profoundly scaled back amid complaints that the government followed inconsistent, highly subjective guidelines, including giving benefits for “maladaptive behavior,’’ and let through some children who allegedly faked poor behavior at the suggestion of needy parents. While federal investigators never substantiated widespread coaching, they did tighten guidelines after finding procedural irregularities and began requiring more medical proof.

Ethel Zelenske of the National Organization of Social Security Claimants’ Representatives, which represents lawyers and advocates for SSI cases, said she worries that some congressional leaders will smash the program when “a scalpel’’ will do. She said the growth of mental disability cases over the past 15 years also reflects a positive trend toward destigmatizing and treating the many mental conditions affecting children.

Numerous Social Security staffers throughout the country said the Globe articles spelled out what they have long observed over the past 15 years. A claims representative from Milwaukee, who asked to remain anonymous because he is not authorized to speak to reporters, said many indigent parents are desperate for a “disability’’ label for their children simply to get the monthly cash.

“It’s not the job of the children to support the parents,’’ said this worker, who also wrote to his US representative to pursue the issue.

Georgina Huskey, who handles SSI cases for the government in Los Angeles and is planning this year’s conference of the National Association of Disability Examiners, said the problems around the children’s program have been a major topic among her peers.

She said she tailored this year’s conference to include discussion on how they can better follow uniform procedures on children’s cases.

“Even in the same office, you’ll see people adjudicate cases differently,’’ said Huskey.

She also has invited the chief federal investigator from the Government Accountability Office to speak at the August conference about his investigation into the program.

Even if his work is incomplete, she said, she hopes some “preliminary information’’ will be available.

Patricia Wen can be reached at