Social Security Disability for Cystic Fibrosis


People with cystic fibrosis (CF) can find it very difficult to hold down a job. With CF, you will likely qualify for disability benefits from the Social Security Administration (SSA), which makes these benefits available to help people pay medical bills and living expenses.

The disease is a hereditary condition, and it causes excessive, thick mucus to form in the pancreas and lungs. Unfortunately, the presence of mucus in the lungs causes great breathing difficulty and greatly increases the risk of lung infections. CF also causes mucus to form in the digestive tract, and that can prevent the proper absorption of nutrients. Cystic fibrosis is sometimes so severe that young adults with the disease die of heart or pulmonary failure. Symptoms of cystic fibrosis are usually severe and include a cough that produces mucus, high blood pressure, sleep disorders and pulmonary hypertension.

The serious nature of cystic fibrosis disease has been recognized by the Social Security Administration (SSA) as a disease that under most conditions will qualify for automatic payment of benefits. The agency automatically approves cystic fibrosis disability benefits for people with the disease. These automatic benefits are called presumptive disability benefits under the SSDI program. Presumptive benefits for cystic fibrosis disability work this way: you file your regular disability claim, and the SSA will pay you cystic fibrosis SSDI benefits for up to six months while they review your application. In October 2016, SSA updated its official Blue Book disability listings to include additional cystic fibrosis allowances for automatic benefits eligibility.

For cystic fibrosis disability, here are the automatic eligibility requirements:

· Breathing tests with poor results, such as spirometry results that indicate low FEV1, the volume of air that can be exhaled in one second. These tests are highly dependent on gender, height and age, so those factors will be considered.

  • Frequent bouts of pneumonia, bronchitis or hemoptysis that must be treated by a doctor six times per year, or that requires hospitalization.

  • Severe, persistent pulmonary infections that require nebulizer and intravenous antibiotic treatment.

· A collapsed lung caused by CF and requiring the placement of a chest tube

· Respiratory failure that required noninvasive ventilation assistance with biPAP or invasive mechanical ventilation for a period of at least 48 hours (or a period of 72 hours if it happened after surgery)

· Pulmonary hemorrhage with use of a technique called vascular embolization to control bleeding

· Low oxygen levels, meaning an SpO2 reading of 89 or lower. If you live at high altitude, the numbers are even lower. Your low oxygen issues must occur twice within a year period, at least 30 days apart.

· Complications caused by CF: at least three hospital stays of any length in the last year. Hospitalizations must occur at least 30 days apart. SSA also considers two serious complications that occur within one year, such as severe weight loss due to nutrient deficiency, infections requiring 10 days or more of IV antibiotic treatment, or hemorrhage.

· SSA also considers automatic benefits for patients with cystic fibrosis related diabetes (CFRD) requiring insulin. CFRD is a type of diabetes unique to CF patients, and is caused by the mucus in the pancreas. This mucus creates scar tissue that prevents the pancreas from producing sufficient insulin. The pancreas makes some insulin, but not nearly enough to maintain proper nutrition.

The SSA uses your countable income to determine how much to pay you. The SSA considers four types of income as countable:

· Earned wages from employment

· Unearned income from Social Security benefits, pensions, unemployment benefits, etc.

· In–kind income in the form of food or shelter that is being given to you free of charge

· Deemed income that your spouse or parents have (if you live with them)

The SSA considers other types of income as not countable toward disability; visit the SSA website to see a full list.

If you receive presumptive disability benefits for six months, and your claim is later denied, you do not have to pay the money back. Sometimes the SSA might determine that you’ve been overpaid, and they will require you to pay back that portion.Going forward, of course, you will not receive future benefit. The SSA does have an appeal process that you can use in cases where your initial claim has been denied. A first denial does not necessarily mean you won’t eventually qualify for benefits. The majority of claims are denied due to lack of sufficient medical evidence, so it is best to hire a lawyer, gather the appropriate paperwork and let the legal firm refile the claim on your behalf. SSA has a four step appeal process which can be cumbersome, so it is a smart move on your part to contact an experienced firm to guide you through that process.