ALS patients will receive disability benefits sooner

Litchfield couple help to
cut red tape for aid

John Hunter wouldn't take no for an answer.

He wouldn't even take yes for an answer, not as long as others in his situation were being told otherwise.

Hunter, of Medina County's Litchfield Township, has amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease. When the Social Security Administration denied him disability coverage, he fought the system -- first for himself, then for others with the fatal disorder.

Because of his persistence, ALS patients no longer wait as long to receive disability benefits. Now they are automatically considered eligible for disability and Medicare coverage when their doctors diagnose the disease and receive those benefits faster.

In recognition of that effort, Hunter, 40, was honored last month by the Muscular Dystrophy Association with its 2003 Personal Achievement Award for Ohio.

``John is just a great example of someone who took on a disease and not just faced the challenges, but did so much more'' to benefit other people, said Jackie Simcic-Becker, who works with Hunter and his family as MDA's health-care services coordinator in the Cleveland area.

Not so long ago, it might have seemed an unlikely victory for a man who said he never had been politically active. But all that changed when Hunter came up against a governmental system that seemed unable to adjust to his situation.

Hunter was diagnosed in late May 2002 with ALS, a neuromuscular disease that gradually robs the person of the ability to control and move voluntary muscles. By August 2002, the disease had affected him to the extent that his doctor advised him to apply for disability.

Hunter and his wife, Jonna, were warned that the process would be slow. In fact, they were told that in many ALS cases, death benefits are approved before a decision can be made on disability benefits, Jonna Hunter said.

``I was just appalled by that. I thought that was so wrong, and so did John,'' she said. She spoke for her husband during much of an interview last week, because talking tires him.

ALS typically takes a long time to diagnose but progresses fairly quickly, with its victims living an average of two to five years after diagnosis. So while the government's benefit-approval process may be adequate for people with illnesses that are slower, Jonna Hunter said, the couple believed it was too slow for ALS patients.

The Hunters contacted their congressional representative, Sherrod Brown, to request help in expediting the paperwork. Still, in November the Social Security administration notified Hunter that his application had been denied.

The determination was based on the fact that he could still walk and use his arms to a limited extent, ``even though he couldn't write, couldn't hold the phone, couldn't do any of that stuff,'' Jonna Hunter said.

At the time, John Hunter was able to work only one or two days a week as an on-site foreman for Suburban Contractors Inc., a job he had to give up in December. He recalled how difficult it was to cope with the rejection at the same time he and his family were trying to deal with the physical and emotional effects of the disease.

``The heartache it put us through, I thought, was so unfair and so unjust,'' he said.

Duane Pohlman thought so, too. Pohlman, an investigative reporter with WEWS (Channel 5), heard of Hunter's denial through a mutual friend. He took up the cause, airing a story on the situation and challenging Social Security on its decision.

Within three days, the denial was reversed.

The Hunters were grateful to Pohlman, but they still weren't satisfied. They knew that most ALS patients don't have reporters to bring attention to their struggles, and they didn't want those people to experience the same heartache or have to fight for their benefits.

So with Pohlman's help, they decided to do the fighting for them.

Over the next nine months, the Hunters crusaded to change Social Security's rules -- a focus they said was second in importance only to their children, Tori, 8, and Jace, 5. With Pohlman, they made two trips to Washington, first meeting with Ohio's congressional representatives, Sen. George Voinovich and Martin Gerry, a deputy commissioner with the Social Security Administration, and later with Sen. Mike DeWine.

The trips were exhausting for Hunter, who recalled the strain of going from office to office during one visit. ``There were some times I could see the fatigue,'' his wife said, ``but he did it for other people.''

The effort succeeded. In July, Social Security Commissioner Jo Anne Barnhart announced the regulatory change, which received final approval from the Office of Management and Budget in August. It's called the John Hunter Rule.

Hunter was quick to credit Pohlman's encouragement and determination, as well as his wife's persistence, with bringing about the change. He also cited the support of Brown, Voinovich and U.S. Rep. Ralph Regula.

With their help, Hunter has made life a bit easier for other ALS patients and their families during a difficult time. ``I saw it as a chance for me, in my lifetime, to really make a difference,'' he said.

That wasn't his only motivation, though. He also did it for his children, Jonna Hunter said.

``There's no way to make sense of this disease. No way at all,'' she said. But she and her husband saw this as a way to show their children that good can come from even the darkest of circumstances.

``He didn't just sit here and give up,'' but used his limited energy to benefit others across the country, she said. ``I think that's going to give Tori and Jace something to hold onto.''

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