Ambition a Hindrance for Quadriplegic Seeking Independence : Benefits: Steve Berry went off the federal rolls after obtaining his Ph.D. Now he's in need, but the government has to determine if he's disabled.


Steven Berry is a man who wants to work.

In a nation with a deeply imbued work ethic, that should be an admirable aspiration. But in Berry's case, it has proved to be a hindrance.

Berry, 40, is a quadriplegic who must use a wheelchair. With the help of Social Security Supplemental Security Income benefits, he was able to earn a Ph.D. in comparative literature from UCLA in 1986. With his degree in hand, he felt sure that he would soon be able to support himself and went off the SSI rolls.

Instead, he found his field to have few openings, and he has been looking for a full-time job for four years.

Fortunately, Berry's parents were able to supplement the money he earned as an occasional consultant for the RAND Corp. to help pay his expenses, which include a $200-a-month personal attendant.

But Berry's father is now retired and is no longer able to provide him with financial support.

So last May, Berry applied for SSI benefits again so that he can continue to live independently while he searches for a full-time job.

Berry, who was considered disabled while he attended school, is still awaiting a final determination on whether he is now disabled according to government criteria.

It seems that the consultant work he has performed at the RAND Corp. may have affected his eligibility for SSI benefits.

"I really believe that my problem has been that I'm a square peg, in a certain sense," said Berry. "That I don't fit the common definition of what is disabled and what is not disabled."

People who work with disabled people say that Berry's dilemma is not uncommon.

"It's basically an all-or-nothing proposition for disabled people who are already working," said Douglas Martin, chairman of the National Council on Independent Living and a special assistant to UCLA Chancellor Charles Young. "If he stops working, he can get on all these programs for the rest of his life."

According to Martin, Berry would have been better off if he had never gone off SSI. Recipients receiving benefits are allowed to start working and retain their attendant services and Medi-Cal insurance, while having their benefits reduced on a sliding scale.

But in the case of someone like Berry--applying for benefits while already working--he must reduce his income to $500 per month in order to qualify for benefits, even if his monthly expenses exceed that amount.

"Personally, I think it's much too low," Martin said, referring to the $500 income limitation. "And for severely disabled individuals, it's punitive."

Martin finds it ironic that many times, people in Berry's situation are working only because of government-sponsored training programs and financial aid programs that enabled them to earn advanced degrees. "Our policies in respect to this are schizophrenic," he said.

Berry has sought legal assistance from Westside Legal Services, to help plead his case with Social Security. Steven Bruce, the lawyer handling his case, said that Berry's problem is not unusual among disabled people.

"(There are) people who want to work, who want to be off of Social Security," Bruce said. "But there are actually rules that hinder them from getting off the rolls."

Social Security spokesman Virgil Kocher could not comment specifically on Berry's case, but confirmed that the government had a very strict definition of disability. SSI benefits will be granted to a person only if the disability is so severe that the person cannot work.

"It's harder to prove that someone is unable to work if they're already working," he said. In Berry's case, it would have to be demonstrated that his attempts to work have been unsuccessful, or extremely limited.

In addition, someone who receives benefits cannot possess resources or assets in excess of $2,000. Any money received from another source is subtracted from the standard SSI payment of $630 per month. One-half of any income earned from work is subtracted from the entitlement. Last year, Berry earned approximately $650 from RAND. This year he earned $394.

Finding a job at a university or a community college would solve Berry's problems. But despite being called for numerous interviews, he has not yet received an offer.

Frederick Burwick, a UCLA English professor who guided Berry's dissertation, said he believes Berry's disability has been a factor in his inability to find a teaching position. He noted that while he considers Berry to be an excellent teacher and scholar, calling him a "one-man comparative literature department," potential employers balk when he arrives for interviews and see that he is disabled.

"When he rolls in in his chair, their jaws drop and they're frightened," he said.

Berry said the delay in receiving benefits has caused him tremendous financial strain. The manager of his West Los Angeles apartment sent Berry an eviction notice and was threatening to change the locks on his door until RAND last week agreed to pay his $750 per month rent until December. RAND also will pay for his personal attendant until then.

Bruce said even if Berry's application for SSI benefits is rejected, he still has two opportunities to appeal.

Berry is not optimistic that the Social Security system can make a reasonable assessment of what he needs to live independently.

"It seems to me that this is indicative of the fact that the Social Security Administration doesn't have a realistic view of how people should be allowed to work and earn an income and receive help simultaneously," he said.

And if he had a choice, Berry says he would rather not be a client of the system at all.

"In the final analysis, I want a job," Berry said. "And I think that I have a really excellent resume that shows that I am an employable individual, rather than somebody who is trying to walk a tightrope act between welfare and partial employment."

Meanwhile, Berry is getting frustrated, and fears his attempts to live on his own will ultimately fail.

"I know several people who have tried to mainstream themselves into the system," he said. "And I've lasted since 1977, and I've been on the verge of doing that mainstreaming. And there's many a slip betwixt cup and lip, as they say.

"It's not that I haven't been trying. And I get up every morning, thinking to myself, 'Am I going to survive or not?' "

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