Can I Get Disability Benefits for My Child's Cystic Fibrosis?

Cystic fibrosis is an inherited disorder that can be disabling in its more severe stages. Cystic fibrosis (CF) makes it difficult for a child's body to carry salt and water to and from cells, causing a buildup of thick mucus in various parts of the body. This mucus can cause respiratory and digestive problems.

Is Cystic Fibrosis a Disability?

CF is a disability when it causes serious limitations. However, the symptoms of cystic fibrosis vary from child to child. And the age at which a child's symptoms become more severe also varies. So, children will qualify for disability benefits based on CF at different stages in their development.

Because of this variance, if the Social Security Administration (SSA) denies your child's benefits after an initial disability application and hearing, don't give up. You can reapply when your child becomes more symptomatic.

Cystic fibrosis can be characterized by recurrent bouts of infections and slow growth, so you need to present medical evidence that shows the development of your child's symptoms over time. You need to show a pattern of recurrent lung infections or developmental delay—something you can't do with just one diagnostic finding, hospital record, or a single treatment note.

Disabling Symptoms of CF in Children and Teenagers

Infants and children. Some of the symptoms that might be disabling to newborns or younger children include the following:

• coughing, wheezing, and difficulty breathing due to thickened mucus
• thickened mucus in the pancreas, which blocks enzymes and causes difficulty absorbing nutrients, which can lead to slow growth and potentially a failure to thrive
• a compromised immune system
• frequent lung infections, and
• intestinal blockage (called meconium ileus) in which excessively thick meconium (the baby's first stool) obstructs part of the small intestine. The thickened meconium can also block the large intestine, causing further bowel problems. Occasionally, the small bowel will become twisted and not develop properly in babies born with CF.

Teenagers. Disabling symptoms that tend to occur later in the teen years and early adulthood include:

• frequent bouts of sinusitis
• lung damage due to frequent respiratory infections such as pneumonia and bronchitis
• pancreatitis
• liver disease due to blocked bile ducts
• gallstones
• diabetes
• osteoarthritis, and
• clubbing of the fingers and toes.

How Is Cystic Fibrosis Diagnosed?

The most common test for cystic fibrosis in young children is the sweat test, which measures the amount of sodium and chloride in your child's sweat. If a child has high levels of these elements, it strongly suggests cystic fibrosis.

Another diagnostic test is genetic testing to identify whether your child has the genetic markers for cystic fibrosis. The doctors might follow up with additional tests, such as chest X-rays and blood tests to measure nutrient absorption.

Later, when your child can understand the instructions for pulmonary function testing, your child's doctor might conduct this type of test to determine the degree of lung impairment.

How Does My Child Qualify for Disability Benefits for CF?

Social Security takes several steps to determine whether your child qualifies for benefits. The first step is determining whether your child meets the income and asset guidelines for Supplemental Security Income (SSI). SSI is a needs-based program awarded only to children whose household income and resources fall below a certain amount. (Read more about the SSI income limit and asset limit.)

Once financial eligibility is confirmed, Social Security must determine whether your child's impairment is severe enough to significantly impact your child's ability to engage in normal, age-appropriate activities. Social Security will likely consider your child's impairment severe if your child:

• has trouble breathing with minimal exertion, or
• is significantly underweight with a weakened immune system or frequent infections.

Your child's impairment must also be expected to be severe for 12 months or more. This requirement is easily met in the case of CF because it's a progressive condition.

(Learn what it takes for an adult with CF to qualify for Social Security disability benefits.)

Will My Child Automatically Qualify With Severe Cystic Fibrosis?

A child with CF can automatically qualify for disability benefits, but only if the child meets the specific medical criteria detailed in Social Security's Listing of Impairments. While children with advanced CF often meet the listing criteria, some children with severe (but not advanced) CF might not. But children who don't meet the medical criteria can still be deemed disabled due to the severity of their functional limitations (more on this below).

How Can My Child Meet the Listing for Cystic Fibrosis?

Cystic fibrosis can be evaluated under several different listings because the disease can impact several body systems.

• Lung issues caused by CF are analyzed under listing 103.04, which deals with respiratory diseases in children.
• Intestinal and bowel issues are dealt with under the listings for digestive disorders, which can be found in Section 105.00.
• Less frequently, children with CF suffer from digestive and pancreatic problems that can affect the child's relative weight and ability to absorb nutrients. A child with significant weight and development issues might meet the listing criteria in Section 100.00, which deals specifically with growth impairments.

Most children with severe CF have respiratory issues. Briefly, to meet the pulmonary criteria of listing 103.04, your child must have experienced one of the following:

• a forced expiratory volume (FEV₁), which is measured with a spirometer test, that meets the criteria in Tables A or B (depending on age)
• 3 hospitalizations in the last year of any length, occurring at least 30 days apart
• 2 serious exacerbations in the last year involving:
• pulmonary hemorrhage
• weight loss requiring supplemental nutrition
• 10 days of intravenous antibiotic treatment, or
• CF-related diabetes requiring daily insulin
• a collapsed lung (pneumothorax) due to CF that required chest tube placement
• vascular embolization to control a pulmonary hemorrhage (bleeding in the lungs), or
• invasive mechanical ventilation or noninvasive ventilation with BiPAP for at least 48 hours (or 72 hours if following surgery).

Children under the age of six who are too young to perform pulmonary function testing (PFT) can also qualify if their medical records include the following:

• diagnostic imaging (X-rays or CT scans) that show:
• thickening of the proximal bronchial airways
• nodular-cystic lesions
• segmental or lobular atelectasis, or
• consolidation (filled areas of the lungs), and
• at least one of the following:

• • history of shortness of breath on exertion
  • bilateral rales and rhonchi or reduction of breath sounds, or
  • accumulation of secretions causing repetitive coughing.

If your child's symptoms aren't identical to those in the listing described above, but you feel they're equal in severity to some of the listings, you might have an argument that your child's condition "equals the listings."

What if My Child's CF Doesn't Meet a Listing?

Children who don't meet the requirements of a listing can still qualify as disabled if their cystic fibrosis significantly impacts their functioning (called "functionally equaling" the listings). Social Security examines certain areas of your child's life called "domains" of functioning. The six domains of functioning include the following:

• acquiring and using information
• attending and completing tasks
• interacting and relating with others
• moving about and manipulating objects
• caring for yourself, and
• health and physical well-being (the physical effects CF has on your child's functioning).

Children who have severe limitations in two domains of functioning or extreme limitations in one domain will qualify medically as disabled. (20 C.F.R. § 416.926a(b)(1).)

It's clear to see how the domain of health and physical well-being could be severely compromised in children with CF. A child with severe cystic fibrosis might make frequent hospital and emergency room visits for infections, testing, and treatment.

These issues can also have a significant impact on the child's ability to attend to and complete tasks. Frequent coughing spells might interfere with your child's ability to concentrate, while the need for frequent treatments could interfere with your child's ability to stay on task.

A child dealing with a severe, chronic condition like CF might miss a lot of school. It's important to provide school documentation showing absences and any comments from teachers attesting to concentration difficulties. School records and teachers' observations are two of the best sources of evidence about how your child is functioning.

Significantly impaired growth might also interfere with your child's ability for self-care (as compared to similar-aged children). Parental reports or statements from occupational, physical, or pulmonary rehabilitation therapists can provide important proof of these limitations in functioning. Gather these statements as early as possible so that Social Security can consider these elements in addition to medical documents in evaluating your child's claim.

To learn more about proving your child's limitations, see our article on functionally equaling the disability listings.

How to Apply for SSI Disability for a Child With Cystic Fibrosis

Applying for SSI disability benefits for a child is a two-step process, and you can't complete it on your own. But there are four ways to get your child's application for SSI disability benefits started:

• Call Social Security at 800-772-1213 (TTY: 800-325-0778) to make an appointment to file your child's SSI application.
• Make an appointment at your local Social Security office to complete the application in person.
• Complete an online form to let Social Security know you want to apply for benefits for a child.
• Complete an online child disability report for your child.

Once you've used one of these methods to get the ball rolling, Social Security will set an appointment for you to complete the application process. Then, prepare to wait. It can take several months for Social Security to decide if a child qualifies for SSI disability benefits—or much longer if you have to appeal your child's claim.

Learn more about a child's odds of getting disability benefits, including what it takes to win an SSI claim for a child.

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