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July 29, 2014

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Woman to government: My inability to remember qualifies me as disabled

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Leila Navidi

Tina Kitchel at home with her son Christian, 3, on Thursday, June 20, 2013, in Pahrump. Kitchel went into cardiac arrest three years ago during the birth of her son Christian. Her heart stopped for 27 minutes and she was in a coma for 13 days. Today, her brain no longer has the function to store short term memory.

Memory Loss

Tina Kitchel at home with her husband Jason and children Jonathan, far right, 6, and Christian, 3, on Thursday, June 20, 2013 in Pahrump. Kitchel went into cardiac arrest three years ago during the birth of her son Christian. Her heart stopped for 27 minutes and she was in a coma for 13 days. Today, her brain no longer has the function to store short term memory. Launch slideshow »

Tina Kitchel stirred awake in Spring Valley Hospital with a tube in her mouth and her arms riddled with needle marks from an IV.

Her husband stood at her bedside, relieved to see her awaken. She stared back at him like he was a stranger in a crowd. There was so much she didn’t know.

Nearly two weeks prior, she was in the third trimester of pregnancy — their second child. A complication stopped her heart for 27 minutes. Doctors performed an emergency cesarean section in the hallway of the hospital to rescue her child — and bring her back to life. She had been in a coma for the past 13 days.

She was unaware of these events. And that man at her bedside telling her all this? She didn’t recognize him as her husband, Jason.

She later learned that while her heart was stopped, her hippocampus — the portion of her brain that stores short-term memory — atrophied. She was told she would never be able to recall a memory again; not her wedding day, the births of her children, their school graduations, their wedding days.

Her life would never be the same.

Today, three years later, “It’s like I woke up in a dystopian society,” Tina says.

Tina, now 41, and her family are still adjusting to this new reality.

Her neurologist, Dr. Mouchir Harb, told Tina she is disabled and would never be able to work again. This news crushed her; she had worked since she was 17. She would need to apply for Social Security disability payments. In her case, that would amount to $2,000 a month, a stipend for her children and medical insurance. The checks would give the family some stability in case Jason were ever to lose his job.

But the Social Security Administration has rejected her application for disability payments. Despite her medical issues, she can watch surveillance monitors, the government says. Or she can peel potatoes.

Tina is appealing, but she won’t get a chance to make her case to an administrative law judge until April. The process could leave her without disability insurance benefits for up to a year and a half — if she wins.

But it’s not just about money. At issue is why the government considers some people disabled, but not others.

Tina is one of 3,616 people in Clark County seeking Social Security disability payments. They’re competing for the attention of six administrative judges and they’re looking at 11 months of waiting.

• • •

Tina Kitchel thought she had her life mapped out perfectly. There was no allowance for becoming disabled.

She had worked in hospitals since she was 17, most recently as a monitor technician.

She had plans to return to school to become a physician’s assistant. She and her husband had one child and wanted a second, and Tina was making enough money to allow Jason to return to school to better his career.

She worked five 12-hour shifts each week at three different hospitals. From 7 a.m. to 7 p.m., she tracked the heart beats of nearly 20 patients, waiting to catch an irregularity. Patient’s lives depended on her vigilance.

It was a stressful job, but she loved it. It gave her purpose. She was the breadwinner. She was independent.

“I used to know where I’m supposed to go, or who I’m supposed to be,” Kitchel said.

The brain damage has robbed Tina of that identity. She can’t leave the house alone because she gets disoriented simply walking around the block.

She can’t use the oven to cook family meals because she might forget to turn the burners off. Her damaged depth perception and memory prevent her from driving.

“She has a severe brain injury that affects her ability to cognitively function with any kind of work,” Harb said. “She is very forgetful. ... She can do simple things, but she cannot take care of her bank account. She needs help with her basic needs.”

Tina compares her memory to a cracked water bottle. Memories go in, but facts and details constantly leak out, leaving her with with nothing at all. She can remember major life events up until 14 years old, fragmented memories up until 28 years old, and nothing today.

“It’s either right now or the future,” Jason said. “There is no past. That took a lot of adjustment.”

Memories like Jonathan — her oldest son — graduating from kindergarten or that he loves her pancakes, or Christian’s first birthday. They are just pictures and notes, devoid of nostalgia, in the journal she keeps on her pink iPad. She knows she was there, but she can’t recall the details of that moment to make it real.

As for being married to Jason, it’s a fact she’s come to lovingly accept. To make it easier, Jason has made a photo video of their wedding which she watches frequently. She may not be able to remember the details, but she can see the joy they both shared that day.

Despite Harb’s diagnosis, Tina has been denied disability insurance benefits three times — once by Prudential’s long-term disability insurance program and twice by the Social Security Administration.

Her second examination with a Disability Determination Service’s appointed doctor took place in a Las Vegas Best Western conference room. Jason dropped Tina off at the hotel because she had to be examined alone and that would last several hours.

But the doctor ended the exam early and left Tina wandering the street confused and searching for Jason until he tracked her down at a nearby bus stop.

Both examinations with the Social Security Administration ended with a form letter of rejection that read in part:

“While we realize that you are somewhat limited in your physical activity, your condition does not meet the severity requirements for total disability,” the letter stated. “Based on evidence, you should be capable of some type of work activity.”

While all three doctors told her she could work, only her neurologist is allowed to medically approve her. He is the one legally responsible for any accident she may cause at work.

And without his approval, she would have to lie on her job application — making her liable for anything that would happen to her at work. It’s a risk she and Jason aren’t willing to take.

• • •

Three years. That’s how long it takes a person applying for disability benefits to start receiving their insurance checks, Las Vegas disability insurance attorney Gerry Welt estimates.

A lot can happen in three years. Tina was making $60,000 three years ago. Welt has seen clients use up their life savings and lose their homes to foreclosure because they have no income. He’s watched people with bad backs deteriorate waiting for medical insurance to pay for surgery.

Some clients died waiting for their disability insurance benefits.

People who require disability insurance payments aren’t able to receive them in a timely manner, said Welt, who has been working disability insurance law for more than 30 years. The process is broken.

“This is not a healthy existence they want to be in,” Welt said. “Frankly I think a lot of my clients, if they could’ve gotten the appropriate medical care within a year or two, they could’ve gone back to work.”

Every disability insurance case in Nevada starts with a Nevada Disability Determination staff caseworker. To qualify, applicants must prove they’ve worked a predetermined number of years based on their age. In Tina’s case, she must have worked five out of the last 10 years.

Then the caseworker and a consulting doctor examine the applicant and talk to his or her doctor to determine the severity of the disability.

If the caseworker and consulting doctor decide that person can work any job that exists in the U.S. economy — and that can include peeling potatoes — the person is disqualified from receiving disability benefits. There are no benefits for a partial disability.

The process takes between four and six months, Welt said. Two-thirds of the applicants are denied on their initial application, Welt said based on statistics from the National Organization for Social Security Claimant Representatives. If an application is denied, the person must file an appeal for the case to be considered by a new caseworker and doctor.

Only 18 percent of the appeals are approved, according to NOSSCR. Yet the process can take up to a year, Welt said.

Most applicants end up in court with a lawyer to present their case to an administrative judge. Once there, Welt said a person has about 50 percent of a chance to be approved. Even if approved, the checks don't arrive for at least five months.

“Basically everybody is treating them like they’re liars,” Welt said. “It’s embarrassing. People don’t want to do this, some people are sick of waiting too long.”

The Social Security Administration declined to comment for this story.

Welt said part of the problem is that caseworkers and doctors are understaffed, but they also face no repercussions for denying a person their disability. Sometimes it is easier for them to reject someone than approve them, Welt said.

“What’s the penalty for turning down the people? Except for compassion, they don’t pay interest, they don’t pay attorneys fees — nothing happens to them,” Welt said. “They just turn down the applicants and it goes on to the next level of government.”

Yet Nevada isn’t even the worst state, Welt said. The broken process spans the entire country.

• • •

Tina is awaiting her first visit in a year with her neurologist. Christian, now 3 and healthy, sits on Tina’s leg in the patient’s room, playing with a Hulk action figure; Jason and 6-year-old Jonathan are sitting next to Tina.

Tina's memory has been improving. Routine helps, and her iPhone acts as a second brain, compensating for lapses in memory. She sets alarms with notes attached to remind her what task needs to be done.

She is able to take care of the kids, feed the dogs and complete household chores. Last time, Harb left Tina a twinge of hope that she’d be able to work or drive again.

“We can talk about it next year,” Harb told Tina.

Now, when Harb walked in, he greeted Tina with a smile.

“How have you been since the last time I saw you,” Harb said.

Tina looked perplexed. “I was picturing a different doctor,” she said.

“You forget me already,” Harb said. “But we had such a good relationship. I did not forget you. That means one of us has something wrong.”

Nothing had changed since the last time the two met, Harb said later. It didn’t shock him; he knows the brain does not regenerate. He was shocked to hear TIna hadn’t received disability benefits yet.

After Harb completed routine reflex tests and questions about Tina's memory. Jason tells Harb that Tina still can’t go grocery shopping alone because she becomes disoriented, that she can’t operate their bank account or cook.

Still, Tina feels she is getting better. She asks the question she had been waiting about a year to ask.

“Of course you cannot work, there is no way you can work,” Harb said. “... You are never going to get better.”

Tina cast eyes downward.

“You should be grateful and accept what you have because you could be in a nursing home,” Harb said. “At least your kid has a lap to sit on.”

“It’s just hard to accept,” Tina said.

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