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

You'll need to have enough evidence from doctors and teachers to show Social Security your child's medical and functional limitations.

Cystic fibrosis is an inherited disorder that can be disabling in its more severe stages. Cystic fibrosis (CF) makes it difficult for the 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.

Cystic Fibrosis Symptoms and Medical Evidence

Symptoms can vary from child to child as does the age at which the more serious symptoms manifest themselves. This means that children may be awarded disability benefits at different stages in their development. So if your child is denied benefits after an initial disability application and hearing, don’t give up. You can reapply when your child becomes more symptomatic.

Because cystic fibrosis can be characterized by recurrent bouts of infections and slow growth, it is important for you to present medical evidence over a period of time. One diagnostic finding, single treatment note, or hospitalization record will not show a pattern of recurrent lung infections or a pattern of developmental delay.

Some of the symptoms that might be disabling to newborns or younger children are:

  • meconium ileus, an obstruction of the small intestine. The small bowel can also become twisted and not develop properly. The thickened meconium can also block the large intestine causing further bowel problems.
  • coughing, wheezing, and difficulty breathing due to thickened mucus
  • thickened mucus in the pancreas, causing difficulty absorbing nutrients. This can lead to slow growth and potentially, a failure to thrive.
  • compromised immune system, and
  • frequent lung infections.

Disabling symptoms that tend to occur later in teenagers and early adulthood include:

  • frequent bouts of sinusitis
  • lung damage due to frequent bronchial infections such as pneumonia and bronchitis
  • pancreatitis
  • rectal prolapse
  • liver disease due to blocked bile ducts
  • gallstones
  • diabetes, and
  • 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. High levels of these elements strongly suggests cystic fibrosis. Another diagnostic test is genetic testing to identify whether your child has the genetic markers for cystic fibrosis. The doctors may follow up with additional tests such as blood tests to measure nutrient absorption and chest x-rays. Later, when your child is capable of understanding instructions for pulmonary function testing, this type of testing may be conducted to determine the degree of impairment in the lungs.

How Does My Child Qualify for Disability Benefits for CF?

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

Once income 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 childhood activities. If your child has trouble breathing with minimal exertion or is significantly underweight with a weakened immune system or frequent infections, this is likely to constitute a severe impairment. The disability must also be expected to last for twelve months or more or result in death. This requirement is easily met in the case of CF since it is a progressive condition.

Will My Child Automatically Qualify if the Cystic Fibrosis Is Severe?

Only if your child meets the specific medical criteria set forth in Social Security’s Listing of Impairments Social Security automatically grant your child disability benefits. While children with advanced CF often do meet the listing criteria, some children with severe but not advanced CF may not. However, the children who do not meet the medical criteria can still be deemed disabled due to the severity of their functional limitations (more on this below).

What Are the Medical Criteria to Meet the Listing for Cystic Fibrosis?

Cystic fibrosis can be evaluated under several different listings, since the disease can impact several body systems. Lung issues are analyzed under Section 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. The listings relating to digestion and growth impairment consider the child’s relative weight and ability to absorb nutrients. If your child has significant weight and development issues, Section 100.00 deals specifically with growth impairments.

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

  • three hospitalizations in the last year, of any length, occurring at least 30 days apart
  • two serious exacerbations in the last year (such as hemorrhage, weight loss requiring supplemental nutrition, 10 days of intravenous antibiotic treatment, or CFRD requiring insulin).
  • a forced expiatory volume (FEV1), which is measured with a spirometer test, that meets the criteria in section 103.04 of the listings
  • a collapsed lung (pneumothorax) due to CF that required chest tube placement
  • vascular embolization to control a pulmonary hemorrhage, or
  • invasive mechanical ventilation or noninvasive ventilation with BiPAP for at least 48 hours (or 72 hours if it followed surgery).

Children under the age of six, who may be too young to perform pulmonary function testing (PFT), can also qualify if their medical records include imaging results that show thickening of the proximal bronchial airways, nodular-cystic lesions, segmental or lobular atelectasis, or consolidation 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.
Note that the following criteria from the old CF listing no longer qualify a child for benefits under the updated listing:
  • having pneumonia, respiratory failure, or chronic bronchitis at least six times a year or one time every two months
  • having chronic lung infections that occur at least one time every six months and require antibacterial treatment via IV or nebulizer.

If your child's symptoms are not identical to those set forth in the listing described above, but you feel they are equal in severity, you may have an argument that your child’s condition "medically equals" the listing. For more information, see our article on medically equaling a disability listing.

What if My Child Does Not Meet a Listing?

Child who do not meet the requirements of a listing may still be found disabled if their cystic fibrosis significantly impacts their functioning. This is called "functionally equaling" the listings. Social Security examines certain areas of your child’s life called “domains” of functioning, such as attending and completing tasks, caring for oneself, and health and physical well-being. Children who have severe limitations in two domains of functioning or extreme limitations in one of the domains of functioning will be considered disabled.

One can clearly see how the domain of health and physical well-being may be severely compromised in children with CF. There may be 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 may interfere with your child’s ability to concentrate, while the need for frequent treatments may interfere with your child’s ability to stay on task. There may be many absences from school, and it will be important to provide school documentation showing this, as well as any comments from teachers attesting to concentration difficulties.

Significantly impaired growth may also interfere with your child’s ability to take care of him or herself as compared similar aged children. Parental reports or statements from occupational, physical, or pulmonary rehabilitation therapists may provide important proof of these limitations in functioning and should be gathered 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.

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