Ride For Life: ALS patient waits and waits for benefits

A longtime contractor, Dave Oldenburg knows what it takes to build a good structure with a firm foundation.

But the St. Charles man is beginning to wonder if his Social Security benefit is a house of cards ready to crumble around him.

Stricken with amyotrophic lateral sclerosis (ALS), the 46-year-old Oldenburg applied for Social Security disability benefits in the fall of 2002 but has yet to see a dime of it.

Now, Oldenburg and his wife, Ann, say they are sliding into poverty as they await the $1,200 monthly payments, even though federal law now requires that Social Security speed benefits to ALS patients because of the speed at which it kills.

"I've been paying into Social Security since I was 16, and they just don't recognize it," Oldenburg said. "I can't go back to work. What about that don't they understand?"

ALS advocates have pushed through changes in recent years designed to hurry financial assistance.

The changes include a presumptive eligibility for benefits with a diagnosis of ALS -- assuming the person had paid enough Social Security taxes -- and reducing the waiting period for benefits to five months from two years. Under Social Security guidelines, even those under retirement age are eligible for certain disability benefits.

ALS, more commonly known as Lou Gehrig's disease, causes one's muscles to waste away, slowly robbing victims of their ability to move their limbs and eventually even to breathe and to swallow. Doctors expect Oldenburg to live one to three years.

"There are people who have paid into the system," said Sue Burstein, executive director of ALS Association of Michigan. "They have the right to get the money out when they need it."

Ann Oldenburg said hopes of quickly receiving the ALS benefits disappeared because of problems in establishing eligibility.

The key hurdle is the couple's 1997 tax returns, which they say document Dave Oldenburg's contributions that year to Social Security. The couple said they originally filed the returns in 1997 but that the Internal Revenue Service later said it never received them.

More than a year ago, the Oldenburgs said they refiled the paperwork, only to have a Social Security employee apparently lose them. They said the employee no longer works for the agency.

The couple again has refiled the paperwork, and it now is pending before an agency judge who reviews appeals for denied benefits. A hearing is to take place in two weeks.

"Having ALS is not the worst thing. Dealing with (Social Security) is the worst part -- the red tape you go through," Dave Oldenburg said.

The Saginaw News could not reach officials at the Saginaw Social Security office for comment.

The couple has contacted U.S. Rep Dave Camp, a Midland Republican, for help. His assistants say they are reviewing the case, and they confirm the key obstacle in establishing eligibility is Oldenburg's 1997 tax return.

"Speaking broadly ... sometimes it's just a misunderstanding," said Sage Eastman, spokesman for Camp. "There are good people on both sides. Our job is to get the process back on track. We can only try to get it moving forward."

Meanwhile, the couple said, they are quickly sinking into a financial hole.

Dave Oldenburg, a longtime self-employed contractor, cannot work, and Ann Oldenburg earns $13,000 as a part-time school bus driver because she must spend part of the day tending to her husband's needs.

The only other money they receive is $88 a month from Supplemental Security Income, a federal disability aid program for low-income people.

Although the SSI monthly payment was $536, the couple said the amount fell after federal officials claimed they had overpaid the Oldenburgs by $4,700 since January 2003. Officials have asked the couple to repay the money, which they do not have.

Dave Oldenburg said most of his medical costs are paid by Medicaid.

Meanwhile, the Oldenburgs don't know how much longer they can hang on. Their stack of unpaid bills, now 3 inches high, is growing higher, and they wonder how they can even pay their phone bill.

Ann Oldenburg said facing her husband's looming death is hard enough, but they at least want the financial freedom to attend a concert together or take a day trip during his last year or two of life.

"This is our last summer together," she said, "and I would like to spend my last summer with my husband."