KNOXVILLE, Tenn. (WATE) – A young Knoxville woman, disabled since childhood, has been told she’s not sick anymore. Social Security sent a letter saying her disability and insurance are being dropped and that she is well enough to work. She says she wants to work, but is unable.

Nina Rouse says her health is bad. She can barely make it to the mailbox without losing her breath. Five years ago, a Social Security administrative judge ruled that Rouse was disabled, can’t work anymore and was eligible for Social Security benefits, Supplemental Security Income (SSI), and Medicaid.

Under federal law, after benefits are granted, they are reviewed periodically. Nina Rouse’s case was reviewed a few months ago and she was notified her benefits were ending.

Her identical twin sister Jane, who is healthy, has been looking after Nina Rouse all their lives. Nina Rouse requires an inhaler to open up her airway and she was born with a birth defect in her digestive system. As the twins grew older, Nina Rouse’s esophagus and colon impairments worsened and she was on disability until the age of 18.

At 22, part of her esophagus and part of her colon were removed. That kind of surgery is usually for people with cancer. Nina Rouse never had cancer. Instead, she had breathing difficulties, swallowing problems, needed constant access to the bathroom, and couldn’t stand or walk for long periods of time. She still can’t.

“They moved everything around to make it easier for me to eat again,” she said.

Nina Rouse

Before the operation, she worked at a movie theater and fast food restaurant. Since then, she has not been well.

“She just can’t stay with it. She can’t, like, continue to work because she gets sick,” said Jane Rouse.

Nina has a thick book filled with medical documents describing her illness and medical limitations. After years of hearings and doctor visits, Social Security granted her total disability in 2012. But following a routine general review this year, Social Security says her benefits are ending.

“They say I’m fine, but I’m not,” she said. “‘Your condition does not prevent you from doing some type of gainful work.’ Most people can work. I would be off every other week.

Nina says she’d love to be able to work.

“Nobody wants to be 27 and not working,” she said.

What upsets the twin sisters is the manner in which the general review was conducted by Social Security.

“The lady that reviewed Nina’s case only spoke to my parents. Never once did she contact Nina or take any of Nina’s phone calls,” said Jane Rouse.

“They were using records that are outdated,” said Nina Rouse. “[Social Security says I am] not disabled, that everything is fine. You are okay, you can go back to work.”

Attorney Andrew Roberto specializes in Social Security cases. He does not represent Rouse. He says for people receiving benefits, like Nina Rouse, reviews are conducted to make sure they’re still eligible.

“Pretty much everybody will go under the review in some periodic fashion until they reach retirement age,” said Roberto.

He said if benefits are dropped, as in Nina Rouse’s case, it’s best to appeal quickly, within ten days. She’s done that. Social Security then schedules a hearing.

“The first thing you will do is be invited to review your case with a case worker at the Social Security office. It can take months to go through this whole thing. If you appeal it, you eventually go in front of a Social Security administrative law judge and you may have a new hearing,” he said.

Nina Rouse has appealed and is now waiting for that first hearing.

“I’m going to fight for it back. I have to. I got to. I have to. It’s the only thing I can do,” she said.

Because she appealed within 10 days, her health benefits and small Social Security income will continue. If she loses her appeal, however, she will be required to pay that money back. Many of these appeals are complicated and difficult to negotiate without legal assistance. There is no way to know how long the appeal will take.

Social Security has not responded to WATE 6 On Your Side’s inquiries about Nina Rouse’s case.