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Social Security fast-tracks rare-disease claims



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Washington • In an effort to ease the burden of being stricken with a debilitating condition, the Social Security Administration is expanding a program that fast-tracks disability claims by people who get serious illnesses such as cancer, early-onset Alzheimer’s and Lou Gehrig’s disease — claims that could take months or years to approve in the past.

While providing faster benefits, the program also is designed to ease the workload of an agency that has been swamped by disability claims since the economic recession a few years ago.

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Disability claims are up by more than 20 percent from 2008. The Compassionate Allowances program approves many claims for a select group of conditions within a few days, Social Security Commissioner Michael Astrue said. The program is being expanded Thursday to include a total of 200 diseases and conditions.

Many of the conditions are rare; all of them are so serious that people who suffer from them easily meet the government’s definition of being disabled, Astrue said. With proper documentation, these are relatively easy cases for the agency to decide, too easy to put through the usual time-consuming process that other applicants face, he said.

"Why for someone who is going to die within 15 months do we need 15 years of medical records?" Astrue said in an interview. "If somebody’s got a confirmed diagnosis of ALS, you know that in essence, it’s not only a disability, it’s a death sentence, and there is no use in burdening them with paperwork."

High demand during the sour economy has made it difficult for Social Security to reduce disability claims backlogs and wait times for decisions. About 3.2 million people have applied for disability benefits this year, up from 2.6 million in 2008, the agency said.

Disability claims usually increase when the economy is bad because people who managed to work even though they had a disability lose their jobs and apply for benefits. Others who have disabilities may not qualify for benefits but apply anyway because they are unemployed and have nowhere else to turn.

Two-thirds of initial applications are rejected, according to the agency. If your benefit claim is rejected, you can appeal to an administrative law judge but the hearing process takes an average of 354 days to get a decision. In 2008, it took an average of 509 days, according to agency statistics.

Judge Randy Frye, president of the Association of Administrative Law Judges, said judges have been working hard to reduce backlogs while some decide more than 500 cases a year. But, Frye said, his group was not consulted on the Compassionate Allowances program.

"We want claimants that are worthy of the benefits, that meet the definitional standard for disability, to be paid as quickly as possible," said Frye, who is an administrative law judge in Charlotte, N.C. "On the other hand, I think we are not interested in seeing programs designed to simply pay down the backlog. Whether this is that kind of program or not, I don’t know."


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Social Security’s standard is to award benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death.

More than 56 million people get Social Security benefits. Nearly 11 million beneficiaries are disabled workers, spouses and children. Benefits for disabled workers average $1,112 a month, or about $13,300 a year.

The Compassionate Allowances program is designed to render decisions in 10 days to 15 days. It was started in 2008, about a year after the agency did an internal review of how it handled initial applications from people with a handful of serious but rare conditions.

In about 40 percent of the cases studied, the agency mishandled the claim, either rejecting valid claims or taking too long to approve them, Astrue said. Among the conditions studied was ALS, also known as Lou Gehrig’s disease, a debilitating condition that causes people to lose muscle strength and coordination, eventually making it impossible to do routine tasks such as walking up steps, standing or even swallowing.

Since the Compassionate Allowances program was started, 200,000 people have received expedited benefits, Astrue said. On Thursday, the agency is scheduled to announce that it is adding 35 more diseases and conditions to the program, bringing the total to 200.

The program includes some well-known conditions, including many kinds of cancer such as acute leukemia, adult non-Hodgkin lymphoma and advanced breast cancer that has spread to other parts of the body.

Others are more obscure, such as Alpers disease, a progressive neurologic disorder that begins during childhood, type 2 Gaucher disease, an inherited disorder in which the body accumulates harmful quantities of certain fats, and Menkes disease, a genetic disorder that affects the development of hair, brain, bones, liver and arteries.

"Some of the (conditions) aren’t killing you, some of them are just keeping you to the point where you can’t physically work," said Peter Saltonstall, president and CEO of the National Organization for Rare Disorders. "But you’re still alive and breathing, and in that case you need to buy groceries, you need to be able to support yourself in some fashion. And so this is a program that helped solve that problem."

Robert Egge, vice president of public policy for the Alzheimer’s Association, said the program is a godsend for people who have just received diagnoses that promise to be extraordinarily difficult for patients and their families.

"This is difficult for anybody to negotiate," Egge said of the disability claims process. "But by the nature of the disease it can often be especially difficult for this community, as they are dealing with not only a terrible diagnosis but then the nature of the disease makes it very hard to go through this year-by-year process of getting the benefits they are entitled to under the law."



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