Congenital Heart Disease: When Are Disability Benefits Available?

You can get disability benefits if you have congenital heart disease that causes cyanosis or severe functional limitations on your ability to work.

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Congenital heart disease comes in many forms, with some presenting serious limitations for the patient and others being barely noticeable. If your type of congenital heart disease is so severe that you are unable to work, you may be able to get disability benefits from Social Security (SSDI or SSI).

What Is Congenital Heart Disease?

Congenital heart disease refers to impairments of the structure of the heart or the functioning of the heart that begin before birth. There are two types of congenital heart disease: cyanotic and acyanotic. Cyanotic congenital heart disease causes the skin to turn blue because the heart is not able to provide the body with enough oxygen. Conversely, acyanotic congenital heart disease does not result in a color change of the skin.

Cyanotic heart defects include:

  • tetralogy of fallot (low oxygenation due to right-left shunt, causes blue baby syndrome)
  • transposition of the aorta and pulmonary artery
  • defect of the tricuspid heart valve (atresia)
  • poor connection of the pulmonary veins to venous circulation (TAPVD, TAPVR, or TAPVC)
  • truncus arteriosus (aorta and pulmonary artery failed to divide)
  • underdevelopment of left ventricle, mitral and aortic valves, and aorta (hypoplastic left heart)
  • pulmonary vavlue defect (atresia), and 
  • tricuspid valve defect (Ebstein's anomaly)

Non-cyanotic defects include:

  • ventricular septal defect (hole in the wall dividing the ventricles)
  • atrial septal defect (hole in the wall dividing the atria)
  • open ductus arteriosus (PDA, a blood vessel fails to close)
  • narrow aortic valve obstructing blood flow (aortic stenosis)
  • narrow pulmonic valve obstructing blood flow (pulmonic stenosis)
  • coarctation of the aorta (narrowing of a part of the aorta), and
  • defects in the heart walls or atrioventricular valves (aendocardial cushion defect).

Can I Get Disability for Congenital Heart Disease?

First, the Social Security Administration (SSA) will make sure you meet the general disability eligibility requirements, and then it will look to see if your congenital heart disease meets or "equals" (is roughly equivalent to) one of the qualifying conditions established in the SSA's Listing of Impairments. "Symptomatic congenital heart disease," Listing 4.06, is one of the qualifying conditions encompassed by the listings. If you meet or equal the criteria of a listing, you will be automatically approved for disability. (If you are seeking disability benefits for a child with a heart defect, read Nolo's article on SSI for children with heart defects.)

Congenital Heart Disease Listing Requirements

The listing requirements for symptomatic congenital heart disease is set forth in Listing 4.06 and covers both cyanotic and acyanotic diseases. To be approved under Listing 4.06, you first must be diagnosed with congenital heart disease by cardiac catheterization or another established test. You must also experience one of the following three complications:

  • Cyanosis (blue skin due to oxygen deprivation) at rest, and one of the following:
    • Hematocrit (volume of the blood, by percentage, that contains red blood cells) of at least 55%, or
    • Oxygen saturation of less than 90% in room air or resting plasma oxygenation of 60 Torr or less.
  • Occasional abnormal blood-flow (right to left shunting) in the heart that causes cyanosis with physical effort (for example, when walking) and with arterial plasma oxygenation of 60 Torr or less with brisk movement. 
  • Secondary pulmonary vascular obstructive disease (also called Eisenmenger syndrome) that causes elevated blood pressure.

These listing requirements are particularly complex; ask your doctor to determine whether you meet the criteria for this listing (listing 4.06).  

What If My Condition Doesn’t Meet the Listing?

Even if your congenital heart disease does not meet the criteria set forth in Listing 4.06, you may still be approved for disability; however, approval at this stage is more difficult. At this stage, you must prove that your congenital heart disease causes too many work limitations for you to be able to work full time. To prove this, you should have your doctor provide the SSA with a physical Residual Functional Capacity assessment (RFC). The RFC form should detail the limitations on your ability to perform work-related activities as a result of your particular type of congenital heart disease.

What Your RFC Should Include

An RFC for congenital heart disease should state your specific limits on how long you can walk, sit, and stand, and whether you can push, pull, and carry. And because congenital heart disease can cause significant fatigue it is extremely important that your doctor note whether you need to rest or lie down throughout the day. Often, the need for frequent and unscheduled breaks precludes regular employment, so your doctor should state that because of your congenital heart disease you will be required to rest frequently (if that's the case). Your doctor should also note if your congenital heart disease would cause you to miss work on a regular basis, as this would affect your productivity. A reduction of productivity of 20% ordinarily results in an approval for disability. (For more information, see our article on qualifying for disability due to reduced productivity.)

Evidence Required to Back Up Your RFC

Although the SSA must consider the opinion of most licensed physicians, the SSA will give more weight to the opinion of a doctor who specializes in the diagnosis and treatment of your congenital heart disease. Therefore, you should have your cardiologist prepare the RFC.

It's also important that your doctor’s opinion be supported by objective medical evidence. You should provide the SSA with copies of reports from of all blood tests, EKGs, catheterizations, imaging results, surgeries, and hospital stays. You should also report any side effects of medication, as these often have a significant impact on your ability to work.

Emotional and Psychological Complications

Sometimes people with chronic illnesses suffer from anxiety and depression. If you see a psychiatrist or psychologist for a mental illness, it is helpful for your doctor to prepare a mental RFC. A mental RFC describes any mental limitations on your ability to work, including your ability to concentrate, remember and follow directions, get along with others, and demonstrate reliability. If your mental RFC limits the type of work you can do, combined with the limitations of your physical RFC, there may not be many jobs you can do, if any.

How Your RFC Is Used to Determine Disability

The SSA will look at your RFC and the requirements of your prior job to determine whether you can do your past work; if the SSA feels that, despite your disease, you can do your old job, your claim will be automatically denied.

If the SSA agrees that you can no longer your past job, it must decide if there is any other work you can do. The SSA will consider how old you are, how far you went in school, and the kind of job skills you have, as well as how your congenital heart disease limits your ability to work. If you are over 55 and didn’t graduate high school or go to college, approval will be easier for you than for a younger, more educated person. 

Learn more about how RFCs are used to establish a medical-vocational allowance (approval for disability).

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