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Here's an article titled "The Disability Trap" from the NY Times.

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    Here's an article titled "The Disability Trap" from the NY Times.

    Here's an interesting article titled "The Disability Trap" from the NY Times. The guy profiled in the article didn't have a spinal cord injury but he talks about how it's hard to exist on SSI.

    New York Times, October 20, 2012
    The Disability Trap

    BRAD CRELIA was rushing around the vast media room at an international AIDS conference last summer in Washington, interviewing people for a series of articles on, a Web magazine he founded for people who are H.I.V. positive. The ease with which he moved through the crowd made it clear he’d done this kind of political networking before: he’d worked first as a field organizer for Hillary Rodham Clinton and later as a regional field organizer for President Obama.

    But Mr. Crelia, 27, nearly didn’t make it home from the AIDS conference; without the $17 necessary to buy a bus ticket, he’d had to beg a stranger for a ride back to New York. It was the end of the month, he said. He’d simply run out of money.

    He is one of more than 8.7 million disabled Americans who rely on cash assistance from the government through a program called Supplemental Security Income. The program was created in 1974 to help blind, aged and disabled people meet basic needs for food, clothing and shelter. By 2035, the federal government expects to spend $60.9 billion in payments to 9.9 million people.

    Discussion of Medicare, Medicaid and Social Security programs has been at the forefront of election-year debate. But there has been no discussion of S.S.I. The fact is that expenditures for the S.S.I. program are rising while the economic status of disabled people is on the decline.

    The very program that is supposed to be their safety net is actually the source of the problem, experts say. S.S.I. traps many disabled people by limiting their income to levels just above the poverty line, and taking away their cash benefits if they achieve any level of security.

    At 16, Mr. Crelia was given a diagnosis of porphyria, an incurable hereditary blood disorder. His symptoms — seizures, paralysis, blackouts, nausea and extreme pain — became more and more severe, preventing him from finishing college and landing him in the hospital for days or weeks at a time. In addition, in 2009, he learned he had H.I.V. That has not affected his ability to work. But his porphyria has made maintaining a traditional full-time job nearly impossible.

    So he and others like him need a flexible financial safety net for the periods during which they cannot work. But no such program exists. The only way for Mr. Crelia to qualify for cash assistance was to sign up for S.S.I. — and demonstrate that he was unable to “engage in substantial gainful activity” because of his physical impairment.

    He now receives a monthly check for $506 through the S.S.I. program, and he is allowed to earn $85 more. (He also receives some assistance toward his rent and food expenses.) Once he surpasses the $85, his benefit check will be reduced by $1 for every $2 he earns. And if his income reaches $1,097 a month, he will no longer be eligible for any cash S.S.I. benefits at all. So he must be poor or he must give up all government support. Mr. Crelia is never permitted to have more than $2,000 in the bank, a restriction that places the trappings of a middle-class life — a car, a modest home, a family — far out of reach.

    “I’ve been kept financially sort of in this cage,” Mr. Crelia said. “Just basic things that people rely upon, having a normal life, aren’t things that are really accessible. And won’t be.”

    People like Mr. Crelia — ill, but ambitious, motivated and able to work the majority of the time — don’t fit into a rigid system set up primarily to provide support for those who will never be able to enter the workplace in any capacity. Instead of accounting for a spectrum of ability and administering a benefits package accordingly, the system offers a one-size-fits-all plan: you can either work and not qualify for financial assistance, or you’re sick, and barred from earning any substantial income.

    “Instead of helping people achieve their full potential,” David Stapleton, who directs the Mathematica Center for Studying Disability Policy, testified before Congress last month, “the current disability support system has created a poverty trap.” The employment rate for people with disabilities, he said, is just 21 percent of the rate for people without disabilities, down from 32 percent in 1981. The problems stem from the Social Security Administration’s failure in 1974 to structure a program that motivates work. It is relatively easy to accept cash benefits but very hard to get into the workplace. Mr. Stapleton said that Congress had the power to push to change the structure of the program, but that it had not done so.

    Today, 70 percent of people with disabilities live in poverty. The Affordable Care Act may eventually ease the burden for some individuals with disabilities, namely those who rely on Medicaid through the S.S.I. program, by eliminating exclusions based on pre-existing conditions and annual or lifetime benefits caps. But the impact on the disabled is not yet clear, and experts are calling for additional targeted reforms.

    Richard Burkhauser, a professor at Cornell, and Mary Daly, a government economist, have studied the welfare of people with disabilities for more than three decades, and offer some solutions. They suggest a work-first approach that would help people get job training or employment before they go through the red-tape-ridden path of getting on S.S.I. Now people must go through the lengthy process of proving that they cannot work before they are given access to job training and other programs.

    Instead of enrolling Mr. Crelia in S.S.I., the Social Security Administration could have helped him apply for a loan to finish his bachelor’s degree, increasing his chances of finding a flexible, high-paying job with health insurance.

    Mr. Burkhauser and Ms. Daly borrow another idea from the lessons learned from the 1996 welfare overhaul. Welfare moved from a federal program that did not encourage single mothers to work to a state-run program that offered the incentive of an earned-income tax credit for working mothers. They say S.S.I. should copy this model by allowing people like Mr. Crelia to hold a paying job as often as possible — whether for 20, 25 or 30 hours a week — and having the federal or state government chip in with tax credits to round out his income.

    For now, Mr. Crelia is doing his best to stay busy. He clocks far more than 40 hours most weeks, mostly in unpaid writing. “When I work, I thrive both physically and emotionally,” Mr. Crelia said. “When I am not sick and can control my disease with medication — like now — I want to be able to contribute to society, have a family, grow my business. But not as a volunteer; I want to be paid like everyone else.”

    Freelance journalists who have contributed to The New York Times.
    C4/5 incomplete, 17 years since injury

    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

    I'm glad to see some attention drawn to this. I think it's a fatal flaw in the program that people end up putting ished for trying to work when they can, but have no idea what the solution is.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.


      I don't know the details about other states, but New York has a Medicaid buy-in program for people with disabilities where you can make up to approx. $40,000.
      C4/5 incomplete, 17 years since injury

      "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

      "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust