Getting SSI Disability Benefits for a Child With a Congenital Heart Defect

Congenital heart defects are one of the most common kinds of birth defects, affecting up to 44,000 newborns each year. Ideally, congenital heart defects are harmless and only need minimal treatment or monitoring. But some congenital defects require extensive, potentially invasive treatment to resolve long-term problems. In these cases, parents of children with heart problems may be eligible for Supplemental Security Income (SSI) disability benefits.

In order to qualify for disability benefits for a child with a congenital heart defect, the child's family must first meet the low income and asset limits for SSI. Once preliminary eligibility is established, Social Security can award SSI benefits to children whose medical records demonstrate significantly reduced heart functioning compared with others their age. Because the medical requirements are quite technical, it's a smart move to get familiar with some basics so that you can effectively advocate for your child.

When Is a Child's Congenital Heart Defect Considered a Disability?

Congenital (con-JENN-it-uhl) is a medical term meaning “present since birth.” When a child is born with an abnormal heart structure, doctors say they have a congenital heart defect. The most common congenital defects fall into one of the categories below, but some defects (such as Tetralogy of Fallot) can involve multiple problems:

• Septal defects are holes between the chambers of the heart.
• Stenosis occurs when the heart’s blood vessels are narrower than normal.
• Atresia is a malfunction of the heart valves that pump blood.
• Cyanotic heart defects allow oxygen-rich and oxygen-poor blood to mix.

Symptoms of congenital heart defects vary depending on the type and severity of the defect. Common symptoms include:

• abnormal heart rhythm or rate
• shortness of breath or rapid breathing
• swelling (edema) of the legs, stomach, or around the eyes
• extreme fatigue, and
• pale or bluish skin tint.

Doctors have a range of options for treating congenital heart defects in children. Mild defects may be managed with medication, while more severe defects may require heart surgery or even transplantation.

Does a Congenital Heart Defect Qualify My Child for Disability?

Children who have severe congenital heart defects may qualify for SSI disability benefits provided their family has limited earnings and assets. Because SSI is a needs-based program, if your family has income and assets above the resource threshold ($2,000 per individual and $3,000 per couple), your child won’t be able to get disability benefits, no matter how severe their heart condition is.

After Social Security has determined that your child’s family meets the financial requirements for SSI eligibility, the agency will start gathering information about your child’s heart defect. This means asking your child’s doctors—ideally including at least one cardiologist—for medical evidence that the heart defect is causing significant limitations in your child’s functioning.

Getting SSI for Your Child by Meeting a Disability Listing

Some conditions are so serious that when Social Security sees specific evidence of them in the medical records, the agency will automatically approve the application for benefits. Getting awarded benefits this way is called “meeting a listed impairment.” Social Security has several listed impairments for children with congenital heart defects. Each listing has its own set of criteria that need to be present in your child’s medical records in order to get automatically approved for benefits.

Listing 104.06, Congenital Heart Disease

Several congenital heart diseases are covered by listing 104.06. These include:

• cyanotic heart disease with chronically low blood oxygen
• secondary acyanotic heart disease with severe hypertension
• symptomatic acyanotic heart disease with ventricular dysfunction, and
• any life-threatening heart defect present in infants under 12 months of age that requires surgery (automatically disabling until they turn 1).

Because Listing 104.06 requires specific test results, the language used in the listing is highly technical. Some of the more technical terms are described below. Your child’s medical records will need to show evidence of at least one of the following test results or symptoms in order to get disability under Listing 104.06.

• Hematocrit measures the percentage of oxygenated cells in your blood. If your child has a hematocrit of 55% or more on two separate occasions, three months apart, they can meet the listing.
• Arterial oxygen saturation measures the percentage of a protein responsible for carrying oxygen through your blood. A result of less than 90% will satisfy the listing.
• Resting oxygen pressure uses a unit of measurement called a “torr” to test the amount of oxygen in your blood. Pressure of 60 torr or less is low enough to meet this listing.
• Hypercyanotic spells are temporary periods of decreased blood oxygenation resulting in uncontrollable crying and rapid breathing.
• Syncope is the medical term for fainting.
• Characteristic squatting is a physical symptom of poor blood flow, intended to improve circulation.
• Hypoxemia is the general term for low blood oxygen. Children who experience hypoxemia after exercise can meet Listing 104.06.
• Arterial systolic pressure measures how well your heart pumps blood through your body. A pulmonary artery pressure that is 70% or more of systemic (body) pressure will satisfy the requirements of the listing.
• Ventricular dysfunction occurs when the heart has difficulty pumping oxygenated blood to the rest of the body.

Listing 104.02, Chronic Heart Failure

Children whose congenital heart defect causes them to have an enlarged heart (cardiomegaly) or ventricular dysfunction can meet the requirements of Listing 104.02 with evidence of one of the following:

• persistent tachycardia (fast heart rate) at rest
• persistent tachypnea (rapid breathing rate) at rest
• markedly decreased ability to exercise without symptoms, or
• delayed growth (height and weight measurements that are well below the average for a child of the same age).

The exact heart and breathing rates needed to meet the listing vary by age:

Determining whether a child’s growth has been significantly delayed is a bit more complicated. Social Security uses a metric known as the body mass index (BMI) to calculate your child’s weight-to-weight ratio, and then compares their BMI to the normal developmental range based on how old they are. If your child’s BMI is less than the third percentile (meaning they’re smaller than 97% of children the same age), Social Security will find that they meet Listing 104.02.

Listing 104.05, Recurrent Arrhythmias

Congenital heart defects can frequently cause irregular heartbeats (arrhythmias). If, despite treatment, your child has recurring abnormal heartbeats, they may qualify for disability under Listing 104.05 when:

• the arrhythmia isn’t caused by a reversible condition, such as a medication side effect or chemical imbalance in the body
• the arrhythmia causes repeated episodes of syncope or near-syncope (feeling like you are about to faint), and
• the arrhythmia is shown by objective medical testing, such as an electrocardiogram (ECG), that was taken at the time of the syncope or near-syncope.

Listing 14.09, Heart Transplant

If your child received a heart transplant, they will be considered automatically disabled for one year after the transplant surgery, at which point Social Security will reevaluate their medical records to see if they’re still disabled.

As you can see, the above listing requirements are complicated. It can be helpful to speak with your child’s cardiologist for their input on whether your child meets the criteria. If the doctor agrees to write a medical source statement that the listing requirements are met, even better—Social Security values the opinions of doctors who regularly treat your child in their area of specializa

Qualifying for SSI When Your Child's Heart Defect Doesn't Meet a Listing

Children with heart defects that don’t meet the requirements of the cardiovascular listings can still qualify for benefits if their symptoms are functionally equivalent to the listings. Social Security determines functional equivalence by looking at medical records, teacher’s notes, and standardized test results to determine whether your child has “marked” limitations in two, or an “extreme” limitation in one, of the following functional areas (“domains”):

• acquiring and using information
• attending and completing tasks
• interacting and relating to others
• moving about and manipulating objects
• caring for self, and
• health and physical well-being.

“Extreme” limitations are worse than “marked” limitations. Domains where your child rarely, if ever, functions independently are likely to be labeled as an extreme limitation, such as hospital stays that keep your child out of school for days at a time. Domains that your child can navigate by themselves, but only with a lot of help, will likely be labeled “marked” limitations. For example, your child might need alternatives to many physical activities, such as playing sports with friends.

How Much SSI Can a Child With a Heart Defect Receive?

Children who qualify for SSI can receive up to the federal benefit rate ($994 per month in 2026), the same as adults do. This rate is set by the federal government and represents the maximum amount you can receive in SSI (save for a modest supplement payment in the states that provide them). Calculating the exact amount of a child’s SSI benefit can be complicated, however, since the payment is reduced if the child’s family has any countable income.

Applying for Child SSI Benefits

You’ll need to contact the Social Security Administration to apply for benefits on behalf of your child. You can do this in two ways:

• Call 800-722-1213 Monday through Friday from 7 a.m. to 7 p.m. (If you’re deaf or hard of hearing, call the TTY number at 800-325-0778.)
• Visit your nearest Social Security field office (you can locate your nearest office here).

Explain to the Social Security representative that you want to file an SSI application for your child. The agency provides a Child Disability Starter Kit that can help you prepare your child’s application.

Your child’s application will involve an interview with a Social Security representative. Review the agency’s Checklist for Childhood Disability Interview before you attend. Additionally, you can file a Child Disability Report online by providing information about your child’s cancer treatment so that the agency can obtain the medical records.

Should You Get a Lawyer's Help for Your Child's SSI Application?

The requirements in order for a child with a congenital heart defect to get disability are complicated, and the disability determination process is long and stressful. Having an experienced attorney by your side can go a long way to speed up the process and increase the chance that your child will be awarded benefits, freeing up time for you to focus on your child's medical treatment. Disability attorneys work on contingency, meaning they don't get paid until (and unless) you win, and many offer free consultations, so you can ask around to find a lawyer who's a good fit for you and your child.