Article In Brief
Neurologists play a key role in providing thorough and accurate documentation of the individual’s health status for disability claims, but for many neurologists it can be challenging to address requests from patients who want to apply for disability benefits. Experts identify tips for neurologists to help with the claims.
The pain associated with migraine may make it hard for some patients to function for a few hours until medication takes effect. For others, the intractable nausea or light sensitivity associated with the condition may make work impossible during an attack.
“Migraine is so variable—a patient can feel fine at the start of the day, then get struck by a migraine attack and be incapacitated,” said Carrie Dougherty, MD, associate professor of neurology at MedStar Georgetown University Hospital.
And that, she and other neurologists interviewed for this article told Neurology Today, makes it challenging to address requests from patients who want to apply for disability benefits.
When are a patient’s symptoms so great that the patient should be considered disabled and eligible for disability benefits? A neurologist does not have to make that determination, said Stacy Braverman Cloyd, director of policy and administrative advocacy for the National Organization of Social Security Claimants’ Representatives.
But neurologists play an important role by providing thorough and accurate documentation of the individual’s health status. “There is no more important person to support the credibility of a patient with migraine than a doctor who’s been treating that patient for a considerable length of time,” said Robert E. Shapiro, MD, PhD, professor of neurological sciences at the Larner College of Medicine at the University of Vermont and director of its Division of Headache Medicine, who has received his share of documentation requests over the years.
When an individual files a claim for disability benefits from the Social Security Administration (SSA), a neurologist’s records and opinions on a patient’s condition—diagnoses and how they were determined, when conditions began and how they affect the patient, treatments and their side effects, and more—can provide valuable support for the claim, but the determination of whether the individual meets SSA’s standard for disability is entirely up to the agency, Cloyd said.
The SSA uses a “disability standard” that considers a claimant’s age, education, and work experience as well as the functional limitations caused by their impairments, Cloyd said. Individuals do not have to be completely unable to do any work in order to be eligible for benefits. On the other hand, claimants who are performing what the SSA considers to be “substantial gainful activity”— in 2021, that means earning more than $1,310 a month—are not eligible for benefits even if they have medical conditions that greatly affect their lives.
Many neurologists are unfamiliar with the disability-claim process because they hope their patients never have to use it. “We really try to do whatever we can to help a person maintain function so they don’t have to go on disability,” said Charles E. Argoff, MD, professor of neurology at Albany Medical College and director of the Comprehensive Pain Center at Albany Medical Center.
Of course, some patients experience neurologic disorders such as amyotrophic lateral sclerosis or spinal cord injury that obviously make it impossible to work. But millions of people suffer neurologic problems that present challenges if a patient makes a disability claim. In some cases, the challenge starts with the diagnosis itself.
Dr. Argoff, a board member of the American Academy of Pain Medicine, points to the example of fibromyalgia. “The world appreciates that there’s a validated way of making that diagnosis, but it doesn’t involve a serum test, it doesn’t involve the spinal fluid, it doesn’t involve an MRI,” he said. “And so there may be an unspoken bias against people who very much have legitimate issues, but don’t look as sick as others do.”
Another challenge: Some neurologic conditions, including migraine, are not included in the SSA’s list of neurologic disorders that make a person eligible for disability benefits. Epilepsy, peripheral neuropathy, spinal cord disorders and many other neurologic problems are included; migraine and other chronic pain disorders are not.
“There is no urine dipstick that says, ‘Yep, you’re right, you have intractable chronic migraine,’” said Dr. Dougherty, program director for MedStar Georgetown’s Headache Medicine Fellowship Program. And so migraine, as well as fibromyalgia, may be one of those conditions that may be difficult to document for disability benefits.
Dr. Shapiro agreed, adding, “It’s extraordinarily difficult for people with migraine to have successful claims, despite the fact that they are experiencing severe disability.”
Although migraine is not listed in the SSA list of impairments, advocacy by the Alliance for Headache Disorders Advocacy—a group of 13 non-profit organizations, including the AAN—and NOSSCR did prompt the SSA to issue a 2019 ruling that provided guidance on how current SSA regulations can be applied claims for migraine and other primary headache disorders.
In fact, the SSA evaluates claims from patients with primary headache disorders using the criteria for epilepsy claims. That means SSA evaluates whether a patient’s headache is equal in severity and duration to (1) dyscognitive seizures that occur at least once a week for at least three consecutive months despite adherence to prescribed treatment or (2) dyscognitive seizures that occur at least once every two weeks for at least three consecutive months, despite adherence to treatment, along with a marked limitation in physical functioning, concentration or another function.
“SSA is suggesting that the physician needs to evaluate whether a patient’s headache symptoms are ‘equal in severity’ to dyscognitive seizures,” said Amaal J. Starling, MD, a headache specialist at Mayo Clinic. “It is still confusing and continues to serve as a barrier for physicians trying to help patients.”
Even epilepsy is difficult to validate for disability. Between 30 and 40 percent of patients who have seizures have medication-resistant epilepsy, but they function normally between seizures. For that reason, it is often difficult for those patients to get approved for disability benefits, said David Ficker, MD, associate director of the Epilepsy Center at University of Cincinnati Health.
In a letter to the SSA in February, the AAN expressed its concern that the criteria being used to evaluate disability may lead to disproportionate denials for claimants who have migraine and other so-called invisible neurologic disabilities. It cited Dr. Shapiro’s analysis of SSDI claims, published in the journal Headache last year, which shows that just 0.3 percent of claims were made for migraine, and only 23 percent of those claimants were allowed benefits based on their initial claim, compared to 46 percent for claimants overall.
Tips for Neurologists
If a patient seeks help with a disability claim, Dr. Dougherty suggests scheduling a dedicated visit to learn about their job responsibilities and how their medical condition affects their ability to do them.
“Make sure you’re detailing everything because the symptoms can be so variable, whether it’s nausea or light sensitivity, pain or word-finding difficulties and communication barriers when they’re having migraine,” she said. “Patients can have aura where they cannot see for periods of time, which can impair their ability to do their jobs.”
Dr. Ficker, chair of the Epilepsy Foundation Professional Advisory Board, points out the importance of using the ICD-10 codes for difficult-to-control or intractable epilepsy, when appropriate, rather than the codes for generic seizures.
He also encourages patients to keep a diary of their seizures. “If patients are able to provide documentation that they had four seizures in February and six seizures in March, that is helpful information when their claim is reviewed,” he said.
The Lawyer’s View
Many individuals hire lawyers to help them with disability claims, and the lawyer may, via the patient, ask his or her neurologist to fill out a questionnaire about the patient’s condition. That information is helpful to support a patient’s claim, but physicians are often hesitant to complete the forms, possibly because they equate it to an affadavit that they might be asked to defend, said David Kapor, chair of the Cincinnati Bar Association’s Committee on Social Security for the past 25 years.
“Nobody’s going to call the doctor up and say, ‘Hey, you filled out this report, and we want to examine you under oath,” said Kapor, a partner in Kapor, Davis & Associates in Cincinnati. “That never happens—never. We’re not asking for medical certainty—just give us your best estimate.”
Any opinions that a physician provides in such questionnaires—or in letters to support a patient’s claim—are evaluated by SSA to determine whether they are consistent with information in the patient’s medical record.
Kapor offers other advice for neurologists asked to support disability claims. For one, he suggests that physicians avoid the cut-and-paste function in the electronic medical record system—it can unwittingly sabotage a patient’s disability claim, Kapor said.
He cited as an example a neurologist’s notes from a patient’s initial visit that records a history of both seizures and binge-drinking. The neurologist may prescribe a medication to inhibit the binge drinking, and the patient may agree to follow the prescribed regimen. “But then you look at the social history that’s connected to every chart note in the future and it continues to replicate the fact that he drinks a 12-pack of beer,” Kapor said.
When SSA reviews the patient’s medical record, it may dismiss the disability claim on the grounds that the patient is not adhering to the prescribed treatment. That’s why, in his view, neurologists should update a patient’s history periodically so that, if the records are used for a disability determination, they are current and accurate.
Kapor also recommends that neurologists conduct a thorough physical examination on each patient visit, including testing for sensation for patients with neuropathy and strength for patients who have had a stroke. “It’s important to write everything down and take very detailed notes because it can be very helpful” if the patient makes a disability claim.
Kapor suggests that neurologists ask patients to schedule appointments at the time of day when their symptoms are most obvious. “For example, multiple sclerosis patients often get worn out and have difficulty at the end of the day,” he said. “If that patient’s disability hearing is scheduled early in the day, the patient may appear unimpaired; in that case, the medical record could help substantiate the claim.”
Also, he suggests that neurologists probe for details about side-effects of medication. A patient may be pleased that the treatment is addressing their symptoms downplaying side-effects. For that reason, the neurologist should ask, for example, if antiseizure drugs are producing any cognitive changes.
“If the patient says ‘I feel like I’m spaced out. I can’t focus,’ you need to inquire further because that can be important,” Kapor said. Depending on a patient’s skills, work history, and age, the side effects could be a factor that leads to a successful disability claim.
Listen to your patients and record what they say. If a patient with multiple sclerosis, for example, says that her illness or medication makes her so tired that she must take a nap every day, make a note in the medical record.
“If the chart says that, ‘if this person is going to work, they have to have a break so they can take a nap one hour a day, unscheduled,’ that may meet the definition of disability,” Kapor said.
The Need for Medical Experts
Many patients with neurologic disorders pursue disability claims through the SSA with inadequate input from neurologists, but one expert sees a glimmer of hope that might be changing. That’s thanks in part to advocacy from the American Academy of Neurology.
John C. Kincaid, MD, FAAN, a professor of neurology at Indiana University School of Medicine, has served as a medical expert (ME), a specialist hired by the SSA to provide input on disability claims that were appealed after an initial denial, for about 30 years. Although the SSA does not disclose its list of MEs, Dr. Kincaid believes he is one of only five neurologists in the country serving in that capacity.
He hopes that, in the foreseeable future, serving as an ME will become more attractive and that more neurologists will be willing to serve in that role. “There is a very major need for neurologic expert input,” he said.
Dr. Kincaid’s encouragement stems from the SSA’s response to the Academy’s request, sent in February, that the agency review whether the lack of qualified neurologists serving as MEs is delaying benefit approvals for people with neurologic disorders. It also called on the SSA to raise the ME pay rate, unchanged for the past three decades, and make the process for becoming an ME less burdensome.
The SSA responded that it is working toward contracting with an outside vendor to recruit and hire more qualified MEs, said Nicholas Johnson, MD, FAAN, associate professor of neurology at Virginia Commonwealth University and former chair of the AAN Advocacy Committee. By doing so, the federal government’s pay schedule for consultants could be sidestepped, allowing the ME pay rate to be increased, he said.
The SSA offered no promise nor any timetable for improvement, but Dr. Kincaid thought the agency’s response seemed promising. His individual efforts to effect change have been unsuccessful, but he believes the Academy’s letter, along with lobbying efforts from other organizations, have got the SSA’s attention.
“I was encouraged by what they said because they’re obviously aware of the need,” he said.
Dr. Kincaid and other neurology MEs provide support to SSA administrative law judges who are handling appeals by claimants who have neurologic disorders. In most cases, they respond to questions in writing; occasionally, they participate—usually by telephone—in a hearing. In either situation, the ME must prepare by reviewing the records that SSA has collected—”the records could be as few as 400 pages up to several thousand pages,” he said—and then offer an opinion about whether the applicant meets the SSA’s disability standard for a specific condition, such as epilepsy or dementia.
“Then the judge takes it from there,” Dr. Kincaid said. “The medical expert doesn’t make the final decision on awarding benefits.”
A typical case takes three to four hours to review records and prepare an opinion, he said. The SSA pays $130 for written responses to questions and $160 if the ME participates in a hearing.
If a disability claimant has been treated by a neurologist, the SSA, by policy, prefers to receive that physician’s input as the claim is being evaluated. But many patients who make disability claims because of neurologic problems have not been adequately evaluated or treated by a neurologist.
“Maybe they don’t have insurance coverage, or they have moved from one place to another so there is discontinuity of care,” Dr. Kincaid said. “In my experience, the claimant’s involvement with neurology, in many cases, is pretty thin.”
He receives two to three requests each week from SSA administrative law judges across the country seeking his opinion. MEs are not required to accept requests, so Dr. Kincaid and others fit cases in when they can.
“I think many of these claimants end up going on to their review with the judge without the benefit of neurological expert input,” he said. “The demand is profoundly undermet.”