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Social Security Disability Benefits for Cystic Fibrosis

Bowman, DePree & Murphy

How Does the Social Security Administration Decide if I Qualify for Disability Benefits for Cystic Fibrosis?

If you have cystic fibrosis, Social Security disability benefits may be available. To determine whether you are disabled by your cystic fibrosis, the Social Security Administration first considers whether your cystic fibrosis is severe enough to meet or equal a listing at Step 3 of the Sequential Evaluation Process. See Winning Social Security Disability Benefits for Cystic Fibrosis by Meeting a Listing. If you meet or equal a listing because of cystic fibrosis, you are considered disabled. If your cystic fibrosis is not severe enough to equal or meet a listing, the Social Security Administration must assess your residual functional capacity (RFC) (the work you can still do, despite your cystic fibrosis), to determine whether you qualify for benefits at Step 4 and Step 5 of the Sequential Evaluation Process. See Residual Functional Capacity Assessment for Cystic Fibrosis.

About Cystic Fibrosis and Disability

What Is Cystic Fibrosis?

Cystic fibrosis is a severe genetic disease that causes production of excess mucus. It has major effects on the lungs and the digestive system. In cystic fibrosis the function of the exocrine glands is impaired. Exocrine glands secrete substances outside of the body or into body cavities. Examples include the mucous glands lining the bronchial tree, sweat glands, and glands in the pancreas that secrete digestive enzymes.

There are about 30,000 cases of cystic fibrosis in the U.S., but around 5% of the population unknowingly carries a mutated cystic fibrosis gene. The disorder principally affects whites of northern European descent, but all races can be affected.

Presently, there is no cure for cystic fibrosis. Care is mostly supportive—pulmonary hygiene to drain mucus from the lungs and prevent the onset of pneumonia, antibiotics to treat infection, replacement pancreatic enzymes, exercise, and good nutrition.

Lung Problems in Cystic Fibrosis

The lung problem in cystic fibrosis results from thick, dry bronchial mucus that cannot be adequately cleared from the airways. The excess mucus leads to coughing and sputum production sometimes with coughing up of blood (hemoptysis). Pneumonia and other lung infections are also a frequent problem. Chronic lung infections can lead to chronic obstructive lung disease.

The thick mucus needs to be removed from the lungs with frequent pulmonary hygiene, consisting of postural drainage and chest percussion. This is done by clapping with cupped hands on the front and back of the chest while the person lies with his or her head over the edge of a bed so that gravity helps clear the secretions. Mechanical devices may also be used for chest percussion.

Medications to thin mucous secretions (mucolytics) and bronchodilators to improve air flow are typical components of treatment. Additionally, an inhaled enzyme can help break down cellular material accumulating in the bronchi.

About 80% of cystic fibrosis patients die from lung disease, mostly related to infection.

Digestive Problems in Cystic Fibrosis

Thickened secretions can block digestive enzymes secreted by the pancreas. About 90% of cystic fibrosis patients have some degree of this problem. They must take pancreatic enzymes to digest food. Additionally, vitamin supplements are needed.

Thick, dry intestinal secretions can cause intestinal obstruction that requires surgery to clear. Stool softeners may help; enemas and intestinal lavage (rinsing) may be needed. Exercise is always important, to the extent that the patient can do so.

Other Problems Associated With Cystic Fibrosis

All cystic fibrosis problems are not necessarily pulmonary or digestive. Other problems can be associated with cystic fibrosis, including undescended testicles, diabetes mellitus, inguinal hernias, sinusitis, heart failure, and fibrosis of bile ducts (biliary cirrhosis). See Can I Get Social Security Disability Benefits for Diabetes?

Diagnosis of Cystic Fibrosis

The diagnosis of cystic fibrosis is made with a test called pilocarpine iontophoresis in which a sample of the person’s sweat is collected and analyzed for presence of sodium or chloride. People with cystic fibrosis have elevated levels, which is why their skin tastes salty. The diagnosis of cystic fibrosis has always been made long before a claimant files an application for disability benefits, but sometimes the Social Security Administration has to purchase the test to verify the diagnosis when a claimant’s medical records cannot be obtained.

Prognosis for Cystic Fibrosis

Despite the absence of a cure, improved treatment has steadily increased survival. Because of increased survival the Social Security Administration sees adult claimants with cystic fibrosis, as well as children. In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000.

Winning Social Security Disability Benefits for Cystic Fibrosis by Meeting a Listing

To determine whether you are disabled at Step 3 of the Sequential Evaluation Process, the Social Security Administration will consider whether your breathing difficulties are severe enough to meet or equal the cystic fibrosis listing. The Social Security Administration has developed rules called Listing of Impairments for most common impairments. The listing for a particular impairment describes a degree of severity that the Social Security Administration presumes would prevent a person from performing substantial work. If your cystic fibrosis is severe enough to meet or equal the cystic fibrosis listing, you will be considered disabled.

The listing that applies to lung problems from cystic fibrosis is 3.04. It has 3 parts, A, B, and C.

You will meet the listing and qualify for disability benefits if you meet any part.

Digestive system problems are evaluated under the digestive system listings. You may qualify for disability benefits with a combination of pulmonary and digestive impairments even if neither alone is sufficient to meet a listing.

Meeting Social Security Administration Listing 3.04A for Cystic Fibrosis

You will meet part A of listing 3.04 if you have cystic fibrosis with an FEV1 equal to or less than the appropriate value specified in Table IV corresponding to your height without shoes.

Cystic Fibrosis Table

Part A involves evaluation of the results of spirometric testing. Spirometric testing requires you to exhale into a device called a spirometer, which measures the volume of air you can inhale and exhale. FEV1 means forced expiratory volume in one second. Spirometry is the most important test for evaluating obstructive lung disease. FEV1decreases in proportion to the severity of the lung disease. In other words, the lower your FEV1, the more severe your lung disease is.

Table IV shows the threshold values for the FEV1 that meet the listing for various heights. In reality, gender and age affect normal values but are not taken into account in part A. Since older women have somewhat lower normal predicted values for a given height than men, failure of the table to make a distinction is to the maximum advantage of older women.

Meeting Social Security Administration Listing 3.04B for Cystic Fibrosis

You will meet part B of listing 3.04 if you have cystic fibrosis and episodes of bronchitis or pneumonia or hemoptysis (coughing up blood–more than bloodstreaked sputum) or respiratory failure, requiring physician intervention, occurring at least once every 2 months or at least 6 times a year. Each inpatient hospitalization for longer than 24 hours for treatment counts as two episodes, and an evaluation period of at least 12 consecutive months must be used to determine the frequency of episodes.

Not every episode counts. Episodes must be prolonged lasting one or more days and requiring intensive treatment, such as intravenous bronchodilator or antibiotic administration or prolonged inhalational bronchodilator therapy in a hospital, emergency room or equivalent setting. Therefore, to meet Listing 3.04B, you must have episodes that require a trip to the ER or treatment by a doctor to control.

Documentation of your medical treatment is the key to winning a disability claim under listing 3.04B. Documentation should include hospital, emergency facility and/or physician records indicating the dates of treatment; clinical and laboratory findings, such as the results of spirometry and arterial blood gas studies (ABGS); the treatment administered; the time period required for treatment; and your response to treatment. The medical evidence must also include information documenting your adherence to a prescribed regimen of treatment as well as a description of physical signs.

Meeting Social Security Administration Listing 3.04C for Cystic Fibrosis

You will meet part C of listing 3.04 if you have cystic fibrosis and persistent pulmonary infection accompanied by superimposed, recurrent, symptomatic episodes of increased bacterial infection occurring at least once every 6 months and requiring intravenous or nebulization antimicrobial therapy.

The purpose of part C is to document severe chronic lung disease resulting from infection. The Social Security Administration determines whether you meet the listing by considering factors such as medical history, clinical findings, symptoms, sputum cultures, imaging studies like chest X rays, or direct visualization of bronchi with bronchoscopy.

Part C requires only that the infection be persistent. It does not require any particular level of severity. Furthermore, it does not require symptoms, such as chest discomfort or malaise, although these would support the diagnosis of continuing infection, as would a persistent low-grade fever. Even mild, persistent infection implies ongoing deterioration in the lungs, although it might be slow. In fact, deteriorating pulmonary function studies, like a worsening FEV1, in the absence of obvious pneumonia support the existence of some type of chronic infection.

Residual Functional Capacity Assessment for Cystic Fibrosis

If your cystic fibrosis is not severe enough to meet or equal a listing at Step 3 of the Sequential Evaluation Process, the Social Security Administration will need to determine your residual functional capacity (RFC) to decide whether you are disabled at Step 4 and Step 5 of the Sequential Evaluation Process. RFC is a claimant’s ability to perform work-related activities. In other words, it is what you can still do despite your limitations. An RFC for physical impairments is expressed in terms of whether the Social Security Administration believes you can do heavy, mediumlight,or sedentary workin spite of your impairments. The lower your RFC, the less the Social Security Administration believes you can do.

Claimants with cystic fibrosis are likely to have more limitations than other people with the same severity of chronic lung disease, because of the time they may have to spend in pulmonary hygiene like postural drainage, inhalation of nebulized drugs, receiving treatment for digestive problems resulting in malnutrition, or being treated for complications such as exacerbations of pneumonia.

Many claimants with cystic fibrosis qualify at listing-level severity when they apply for disability. Most of those who do not qualify under the listing are limited to light or even sedentary work. A claimant would need to have a very early and mild form of the disease (not likely statistically) to justify medium or heavy work and it is almost inconceivable that anyone with cystic fibrosis would be justifiably rated as “not severe.”

Getting Your Doctor’s Medical Opinion About What You Can Still Do

Your Doctor’s Medical Opinion Can Help You Qualify for Social Security Disability Benefits

The Social Security Administration’s job is to determine if you are disabled, a legal conclusion based on your age, education and work experience, and medical evidence. Your doctor’s role is to provide the Social Security Administration with information concerning the degree of your medical impairment. Your doctor’s description of your capacity for work is called a medical source statement and the Social Security Administration’s conclusion about your work capacity is called a residual functional capacity assessment. Residual functional capacity is what you can still do despite your limitations. The Social Security Administration asks that medical source statements include a statement about what you can still do despite your impairments.

The Social Security Administration must consider your treating doctor’s opinion and, under appropriate circumstances, give it controlling weight.

The Social Security Administration evaluates the weight to be given your doctor’s opinion by considering:

  • The nature and extent of the treatment relationship between you and your doctor.
  • How well your doctor knows you.
  • The number of times your doctor has seen you.
  • Whether your doctor has obtained a detailed picture over time of your impairment.
  • Your doctor’s specialization.
  • The kinds and extent of examinations and testing performed by or ordered by your doctor.
  • The quality of your doctor’s explanation of your impairment.
  • The degree to which your doctor’s opinion is supported by relevant evidence, particularly medically acceptable clinical and laboratory diagnostic techniques.
  • How consistent your doctor’s opinion is with other evidence.

When to Ask Your Doctor for an Opinion

If your application for Social Security disability benefits has been denied and you have appealed, you should get a medical source statement (your doctor’s opinion about what you can still do) from your doctor to use as evidence at the hearing.

When is the best time to request an opinion from your doctor? Many disability attorneys wait until they have reviewed the file and the hearing is scheduled before requesting an opinion from the treating doctor. This has two advantages.

  • First, by waiting until your attorney has fully reviewed the file, he or she will be able to refine the theory of why you cannot work and will be better able to seek support for this theory from the treating doctor.
  • Second, the report will be fresh at the time of the hearing.

But this approach also has some disadvantages.

  • When there is a long time between the time your attorney first sees you and the time of the hearing, a lot of things can happen. You can improve and go back to work. Your lawyer can still seek evidence that you were disabled for a certain length of time. But then your lawyer will be asking the doctor to describe your ability to work at some time in the past, something that not all doctors are good at.
  • You might change doctors, or worse yet, stop seeing doctors altogether because your medical insurance has run out. When your attorney writes to a doctor who has not seen you recently, your attorney runs the risk that the doctor will be reluctant to complete the form. Doctors seem much more willing to provide opinions about current patients than about patients whom they have not seen for a long time.

Here is an alternative. Suggest that your attorney request your doctor to complete a medical opinion form on the day you retain your attorney. This will provide a snapshot description of your residual functional capacity (RFC) early in the case. If you improve and return to work, the description of your RFC provides a basis for showing that you were disabled for a specific period. If you change doctors, your attorney can get an opinion from the new doctor, too. If you stop seeing doctors, at least your attorney has one treating doctor opinion and can present your testimony at the hearing to establish that you have not improved.

If you continue seeing the doctor but it has been a long time since the doctor’s opinion was obtained, just before the hearing your attorney can send the doctor a copy of the form completed earlier, along with a blank form and a cover letter asking the doctor to complete a new form if your condition has changed significantly. If not, your attorney can ask the doctor to send a one-line letter that says there have been no significant changes since the date the earlier form was completed.

There are times, though, that your attorney needs to consider not requesting a report early in the case.

  • First, depending on the impairment, if you have not been disabled for twelve months, it is usually better that your attorney wait until the twelve-month duration requirement is met.
  • Second, if you just began seeing a new doctor, it is usually best to wait until the doctor is more familiar with your condition before requesting an opinion.
  • Third, if there are competing diagnoses or other diagnostic uncertainties, it is usually best that your attorney wait until the medical issues are resolved before requesting an opinion.
  • Fourth, a really difficult judgment is involved if your medical history has many ups and downs, e.g., several acute phases, perhaps including hospitalizations, followed by significant improvement. Your attorney needs to request an opinion at a time when the treating doctor will have the best longitudinal perspective on your impairment.

Medical Opinion Forms

Medical opinion forms can be great time savers for both your attorney and your doctor, but they must be used with care. Forms may not be appropriate at all in complex cases; and they need to be supplemented in many cases so that all issues are addressed. The best forms are clear and complete but not too long.