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Best Government Benefit? Social Security Reform

By Brenda Brown-Grooms

I live in Roanoke, Virginia. As of this writing, gas is around $4 per gallon at Sheetz, a franchise-owned convenience store. Milk is almost $5 per gallon. Not even beans are cheap anymore.

I have six prescriptions for medicines that enable me to live a relatively normal life since my stroke in 1998. Barring emergencies, I see my primary-care physician once a quarter. Without insurance, I could not afford to pay for the care or medicines that maintain my life.

I struggle to pay the rent, car loan, student loans, insurance premiums, utilities, food, gas and pet insurance for my elderly dog, Henry Pippen. I manage, but I walk a tightrope. There is no “extra.” Except for the $50 in savings that is necessary to hold open my checking account with my credit union, I do not have savings.

I came off disability in June 2006 because I could finally withstand the physical demands of a 30-hour work week and because I couldn’t live off my payment. After a struggle with disability officials, they agreed that I did not have to pay back several thousands of dollars to which they claimed I was not entitled. (As it turned out, I was entitled to that money.) It took time and reams of paperwork, but I won my appeal.

I work for an independent living center in Roanoke, so I know the trouble people with disabilities have trying to live and pay for the services they need to maintain a healthy quality of life.

Virginia Premier, Medicare’s health insurance in Virginia, maintains that it will pay for “medically necessary” procedures and appliances. Often, however, it does not pay for such for consumers over 18. It took a letter-writing campaign and pressure from my congressperson over many months to get it to pay for a full-leg orthosis for a 24-year-old who would never be able to walk again without it.

Poor and (often) disabled adults over 18 must wait for the annual volunteer dental clinic to see a dentist or be in hospice care (the qualifiers changed and no longer include life-threatening sepsis) to qualify to have their doctor refer them to a dental clinic at an area hospital.

In 2001 Marta Russell, author of Beyond Ramps: Disability at the End of theSocial Contract, wrote about her autistic friend David in Ragged Edge Online (raggededgemagazine.com). David worked for an electronics retail corporation and qualified for Supplemental Security Income (SSI). After the Los Angeles earthquake, he had to move into a board-and-care facility, and his mother made other arrangements while their apartment was being repaired. The change in routine caused him to miss filing copies of his paychecks with the Social Security Administration (SSA) while he was not living at home. The SSA stopped sending his SSI check.

At a hearing before an administrative law judge, David’s mother showed proof of his earnings and explained both the nature of his disability and what happened to disrupt his routine. She further explained that David thought he didn’t have to send copies of his paycheck because he wasn’t living at home. She explained to the judge that she had told the three workers at the board-and-care facility that David needed to send copies of his paychecks to SSA each month. They did not see to it that he did. The judge ruled that failure to send copies of the paychecks would result in David’s losing his payment during that time.

SSA later reinstated David’s SSI paychecks but without back payments. David (who had struggled to save for six years before he could buy a computer) and his mother had to rely on financial support during that time.

To Russell, the scenario is even worse for those who make similar mistakes and are penalized but who have no such support to fall back on.

“A loss of a few hundred dollars to some may mean losing one’s apartment and winding up on the streets,” she said. “It may create conditions where one can no longer hold a job. … It can even end in death.”

According to Nancy Becker Kennedy, a disability activist from Los Angeles, it is “highly inadvisable for any disabled individual to work at part-time or sporadic employment” because to do so risks “throwing these very sluggish benefit systems into confusion.”

Russell writes that “(e)xperience shows that this often results in losing one’s health care, living allowance and money to pay the personal assistant – for months or even years – while SSA and other agencies sort it out (and, hopefully, get it right when they do).”

Such was the case with Lynn Thomson in California.

Thomson worked part time or sporadically and needed personal assistance services. The SSI (or SSDI) and the Medicaid portions of the cost of these services were recalculated each month that she earned income. Thomson, a quadriplegic who needed a personal attendant, tried to earn extra money by stuffing envelopes at home. She reported her income to SSA, which informed her that 1) such work was in violation of its regulations and 2) she had received an overpayment and that her benefits would be terminated until it was paid back. Included in the loss would be her personal attendant and her Medi-Cal benefits. Without a personal attendant, Thomson would have to go to a nursing home; without Medi-Cal benefits, she could not support herself financially.

SSA later learned that it had misinformed her about losing her Medi-Cal benefits. But Thomson was never told that she would in fact not lose those benefits. After a long and bitter battle with SSA, she killed herself. She left a recorded message, Russell writes in Ragged Edge Online, “that the reason for her suicide was that SSA had put her through hell, and she could no longer live with the anxiety.”

As our economy worsens, the Ticket to Work and Work Incentives Improvement Act of 1999; SSI Section 1619(a), which allowed more deductions; the SSA’s proposed automatic adjustments each year to the current Substantial Gainful Activity (SGA) level; and other such reforms of Social Security’s work rules must be made to work.

In 2006, the SGA level was raised from $700 per month for the non-blind to $860 per month, and $1,450 per month for the blind. In 1997, the poverty rates used by the federal government were 35 years old. The poverty rates changed in 2007 to reflect $10,787 ($467 above SGA’s level) for a one-person household under 65 and $9,944 for a one-person household 65 and over. With gas now selling at more than $4 a gallon, it may be time to change the poverty guidelines again.

We need to reform Social Security’s work rules and its benefit system, which harm those it was designed to help. In the meantime, we must learn to advocate for each other and ourselves.

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Brenda Brown-Grooms is an independent living coordinator with the Blue Ridge Independent Living Center in Roanoke, Va., and an ordained minister.

ILUSA.Com

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