ST. AUGUSTINE, Fla. -- Robert Ferrara, 61, has spent the last few weeks reflecting on his life.
"I've always done the right thing," he said.
The retired insurance adjuster is dying; he has A.L.S. or Lou Gehrig's disease.
"Every day, I am dying," he said.
On March 13, 2013, he was diagnosed with the neurological disorder. Marcia, his wife of 37 years, said since the diagnosis, his health has been declining.
"It is sad he can't get the equipment he needs because Social Security will not approve his Medicare coverage," she said.
Last November, said Ferrara, they applied for coverage and during the process, the wrong code was used to identify his illness.
She said since then, every day has ended in frustration.
"I am calling Social Security just about every other day," she said.
She said she is calling to get them to use the correct code so her husband can be eligible for certain benefits.
"They made a mistake on the diagnosis," she said, "They put the wrong code in and I tried to explain it to them."
She said if he had his benefits, he could get an electric wheelchair that would allow him, now and then, to leave his bed, if but for a few moments.
Now he can't because they used a code for another disease instead of ALS.
"I didn't know where to turn," she said.
They've reached out to their Congressman, so far nothing has changed. Even their Mayo doctor has submitted a letter identifying the proper diagnosis, but they're still fighting the same battle they were fighting in November.
"it is frustrating because it shouldn't be," said Ferrara.
The immediate need is an electric wheelchair and coverage for their rising medical bills. The ALS Association has in the meantime donated the use of some equipment.
The irony in all this is Social Security is giving Robert a disability check, but so far, no health care under Medicare.
"That's how screwed up our government is," said Robert Ferrara.
The are exhausted and they would like their bureaucratic nightmare to end.
"I want him to get approved for the Medicare so we can get the equipment he needs to at least enjoy what he has left," said Marcia.
Frank Viera with the Social Security office in Atlanta said they will review the case and contact the client to get the problem resolved
Social Security has created an Ombudsman to help resolve problems. The number to call is 1-800-MEDICARE.