Ellen, a 53-year-old registered nurse, was distraught. She’d just been diagnosed with mild cognitive impairment.
She knew she couldn’t keep working — not with all the highly technical demands of her job, and the safety of patients at stake.
But how would she make ends meet? Her modest savings and the paltry pension she’d get from the hospital weren’t enough to live on.
For Ellen, the answer was to apply for Social Security disability benefits, an option that many people with MCI end up considering when cognitive loss jeopardizes their employment.
Giving up one’s work is a wrenching decision, and qualifying for Social Security disability is a long and arduous process that can require reams of paperwork and meticulous medical documentation.
But with a clear understanding of the process and help from family, your doctors and a good attorney, it is possible to successfully navigate the system and be awarded disability benefits, including a lump sum of retroactive benefits dating back to when you applied.
Nancy L. Cavey, a Social Security Disability attorney in St. Petersburg, Fla., who has successfully been guiding clients from all over the state of Florida with MCI or early-onset dementia through the disability process for nearly 40 years and has handled over 5,000 disability cases, says the journey is fraught with challenges, made even more difficult by the condition that causes the person to apply in the first place.
“A person who has cognitive impairment has difficulty functioning on a daily basis,” Cavey says. “Most people who don’t have cognitive dysfunction don’t understand the Social Security Administration claims process, so you have two hands tied behind your back in the claims process if you have cognitive impairment.”
Living with mild cognitive impairment can be a struggle that affects all aspects of one’s life, but one of the settings where it may be most apparent is on the job.
“It becomes a problem at work,” Cavey says. “Simple tasks they’ve done repetitively on a cognitive level become difficult for them to remember how to do. They have difficulty interacting with their fellow employees or a supervisor, they have difficulty preparing reports or doing presentations. So they’re having problems not only at home but in the workplace, and that becomes the signal, if you will, that something is not quite right.”
That does not, however, mean that people with MCI are necessarily unable to continue working, or that they will be found eligible for disability benefits if they apply.
Depending on the degree and type of cognitive impairment and how slowly it progresses, some people continue to hold a job and work productively even after a diagnosis.
That can be particularly true if your employer is willing to shift you to a less-demanding job or make accommodations for your impairment. However, Cavey’s experience suggests that is the exception. “The reality is that most employers are not going to accommodate restrictions and limitations as a matter of course,” she says.
If that sounds like your situation, and you’re trying to understand if you may be eligible for Social Security disability and what it takes to plow through the perplexities of the process and actually secure disability pay, here are answers to many of the most commonly asked questions.
If I have mild cognitive impairment, am I eligible for Social Security disability?
You may be, but not based on your diagnosis alone. Some illnesses automatically quality for disability benefits, but MCI isn’t one of them. Social Security is going to want proof that your cognitive impairment is severe enough to prevent you from doing the work you’ve done in the past — or other kinds of work, for that matter.
“The Social Security Administration is looking for evidence that confirms the person is having issues with certain areas of executive function, or problems getting along with others, or personality issues, or difficulty communicating, or outbursts or impaired ability,” Cavey says. “People can complain of all these things, but the Social Security Administration wants to see the objective basis of the diagnosis and the objective basis of the testing that confirms these symptoms.”
How long does it take to get Social Security disability?
It can be a lengthy process. In rare cases, a person may be approved within three or four months, but it’s normal for it to drag on anywhere from 16 months to two years or more. The one bit of good news is that if you ultimately are approved, you may receive back benefits dating to when you applied, or even retroactive benefits dating back to when you became disabled.
Do I need an attorney to apply for disability?
You are not required to have legal counsel, but most people with MCI who managed to get all the way through the process and secure benefits would agree that being represented by an attorney who specializes in disability is the way to go. “I had many people tell me you really need to have a lawyer to be taken seriously and get SSDI,” advises one woman with MCI.
There also are Social Security disability “advocates” who are not lawyers, but specialize in helping people through the claims process. They typically are not less expensive than an attorney would be, but that’s another option.
If I decide to use an attorney, how do I find a good one who specializes in disability cases?
Cavey says a good resource is the National Organization of Social Security Claimant’s Representatives (NOSSCR). It’s a specialized bar association for attorneys who handle Social Security disability claims. You can call the organization at (800) 431-2804, and they will refer you to attorneys in your area.
Cavey recommends that you look for someone who’s a sustaining member of the organization. “I, for example, am a sustaining member, and really what you want to do is be represented by a sustaining member of NOSSCR, which means they’ve been practicing a long time and are experts in Social Security,” she says.
What will it cost me to hire an attorney?
A Social Security lawyer will typically offer a free consultation and will take your case on a contingency fee basis. In other words, they only get paid if you get disability benefits.
The rules of the Social Security Administration say an acceptable fee is 25 percent of the back benefits, to a maximum of $6,000. This would be a one-time fee, and the payment is sent by Social Security to the attorney based on the amount of benefits. Some attorneys may charge more, based on a fee petition where they charge for their time, but that must be approved by the Social Security Administration.
How does the Social Security Administration decide whether I quality for disability benefits?
It’s a 5-step process. Your claim can be denied at Steps 1, 2 or 5. If you’re approved, that would happen either at Step 3 or Step 5. We’ll get to more details about these steps shortly. The most important thing, as you start out, is not to underestimate what you’re in for. It is a long, laborious process. You’re going to need to be well-prepared and you’re going to need a lot of help and a lot of solid medical evidence to make your case.
“The problem is, people don’t understand what they need to prove,” Cavey says. “They don’t have the medical proof, and they’re not represented by someone who understands how to present a case involving mild or severe cognitive impairment. A letter from a doctor saying the applicant can’t do the job isn’t worth the paper it’s written on. You’ve got to establish each of the five steps of the sequential evaluation.”
OK, I understand what I’m facing and I’ve got a good attorney. Now how do I build my case?
Cavey says it’s all about teamwork. “My philosophy is we’re a team, and the team is comprised of the applicant, a family member who will run interference, if you will, the doctor and my staff,” she says.
In the initial application for disability, Cavey looks to build a detailed work history that demonstrates you’re no longer able to handle your current job or do other jobs you’ve held over the past 15 years. For that, you’ll need the help of a doctor in completing what’s called a Residual Functional Capacity (RFC) form.
“It’s crucial is to have a physician who is willing to support the claim, and willing to fill out the Residual Functional Capacity form,” Cavey says. “The other key team player is a neuropsychologist.”
Neurological testing can be expensive, costing a couple grand or more, but Cavey say the Social Security Administration is going to want to see proof of a cognitive impairment.
“Anyone can say, ‘I have problems with my memory,’ but they aren’t going to believe you unless there’s neurocognitive testing that confirms there is an organic cause for these problems, or an organic problem combined with a psychological problem,” Cavey says. “So it’s key to have a team that consists of a supportive neurologist or dementia specialist and a neuropsychologist, and to be working with a law firm that understands neurocognitive issues so they can be working with the applicant and the family member and educating everyone about what needs to be proved.”
So what are the 5 steps in the evaluation process after I apply for disability?
In Step 1, the Social Security Administration will look at whether you are currently working and whether you average more than $1,220 a month. If you do, they will probably say you’re not disabled.
The second step is to consider whether you have an impairment that has kept you from working for a year, or is likely to keep you from working for at least a year.
You can be denied at either Step 1 or Step 2, but if you are turned down, you can appeal that denial.
If I get through those first two steps, what’s next?
Step 3 is a pivotal one. It considers whether your impairment is on the official Social Security list of impairments. Even if it’s not, Social Security still may determine that your impairment is equal in severity to an impairment on the list. If the answer to either is yes, your claim will be approved at that point.
It is not unusual for someone with mild cognitive impairment to have other chronic conditions, and Cavey says that can be to the advantage of the applicant.
“In fact, I think it improves people’s ability to get Social Security disability benefits,” she says. “At Step 3, the issue is whether or not the person’s medical condition meets a listing. So if you have a client who has diabetes, or cardiac disease, and they have mild cognitive impairment, potentially one or all of those conditions can either equal or meet a listing. So I may not meet a listing, but the combination of these problems can equal a listing.”
Still, for someone with MCI, qualifying for disability at Step 3 is often a challenge. Cavey estimates that 90 percent of applicants don’t, in which case you are on to Steps 4 and 5.
Well, then, what do those last two steps involve?
To satisfy Step 4, you will have to prove that you are unable to handle the work you were most recently doing, or any work you’ve done for the past 15 years. Step 5 is even more stringent, asking whether there is any type of job you’re still able to do, given your age, education, skills and restrictions.
“If the records you provide don’t address this,” Cavey says, “the Social Security Administration is going to default to something that says, ‘Oh, you can do a simple, routine, repetitive task like putting silverware in a napkin and folding it all day, or working in a laundromat folding towels all day.’”
She says these are the stages in the process where deep documentation becomes pivotal, particularly the Residential Functional Capacity form. That form is not a Social Security document. It’s something developed by legal professionals to give their clients the best chance of showing that they no longer are able to be employed.
“The Social Security Administration isn’t going to tell you about them, and most doctors aren’t going to whip one out and fill it out,” Cavey says of these RFC forms. “So it’s really crucial that you have a competent, qualified representative who can get your doctor to fill out a Residual Functional Capacity form.”
Stage 5 is the final step, and the point at which Social Security will either approve or deny your application.
What happens if I make it all the way to that point, and still get denied?
You can ask for reconsideration, and if they deny your reconsideration as well, then you would go to a hearing before an administrative law judge.
Cavey says the hearing will last 45 minutes. The first 30 will involve you (or a family member representing you) answering questions from the judge. The final 15 minutes will be testimony from a vocational rehabilitation counselor who will answer hypothetical questions from the judge about your employability.
As with every other stage in the process, preparation is the key.
“The attorney will meet with the applicant weeks beforehand and prepare them for the hearing,” Cavey says. “They’ll go over the questions, teach them how to answer, and then be there at the hearing not only to make sure that the judge has developed all the evidence, but to cross-examine the vocational evaluator.”
Cavey says in the Social Security claims process, the administrative law judge plays a unique role.
“The judge is not only the fact-finder, but also is sort of the Social Security advocate,” she says. “It’s not necessarily adversarial, depending on the judge you have. There are judges who are looking to deny claims, and some judges who are looking to award benefits.”
Either the judge or the Social Security Administration may decide to send you for a medical examination. “If that happens, the red flag should be going up, and the applicant should be getting a representative,” Cavey says.
Daunting though the process is, people with mild cognitive impairment do get through it, and do qualify for disability, depending on how strong their case is and how well it’s documented.
For Ellen, the former nurse who we began this story with, it’s been six years since she went through that process, and she still looks back on it as a grind.
“I remember filling out so many pages of forms,” she says. “Then they started sending me to their physicians and therapists, for corroboration. More neuropsych evaluations were done. It was stressful to me, and it felt like I was jumping through hoops.’’
As an R.N, her training left her better equipped than most to pull together the necessary documentation and records. And she had other medical conditions that helped sway the decision in her favor. “It was approved the first time, and needless to say, I was very thankful when I got that news,” she says.
These days, Ellen does volunteer work, and when asked about her departure from the world of employment, she turns reflective.
“I miss my patients, and my professional identity,” she says, “but God has opened other doors, and I feel blessed.”