Is Cystic Fibrosis a Disability?
Last updated: August 2022
Living with cystic fibrosis (CF) may make it harder to earn a living. Shortness of breath, the need for rest breaks, and sudden hospital stays are common complications that interfere with work. Some jobs offer more flexibility than others. Plus, some bosses may be more understanding than others.
Even in the best situation and with workplace accommodations, working a steady job can be too demanding long-term for someone with cystic fibrosis. One study found close to 70 percent of people with CF stopped working because of issues with their disease.1
If you are unable to work while living with cystic fibrosis and need financial help, you may qualify for disability benefits. The U.S. government offers disability benefits through the Social Security Administration (SSA).
Disability benefits explained
Social Security offers Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) to people who cannot work due to a disability:2
- Social Security Disability Insurance (SSDI) is for people who have worked a certain amount of time. The amount you receive is based on your disability and income earned during your working years.
- Supplemental Security Income (SSI) is for people who have not worked long enough to qualify for SSDI. It is based on age, income, assets, and disability.
People receiving SSDI or SSI get a check each month. They may also qualify for health insurance through Medicaid at some point. Family members may also qualify for benefits.2,3
How to qualify for disability benefits
The SSA evaluates your application for benefits based on certain rules. Even if you have a severe disability, you must provide information to support your claim. The SSA will review and approve your claim based on the information you provide and how it compares to their definition of cystic fibrosis disability.
An SSA doctor, or team of doctors, will review your medical records to decide if you qualify for disability benefits. The criteria used to decide if cystic fibrosis is a disability are listed in the Social Security Blue Book and includes:4
- FEV1 volume (varies by age, gender, and height)
- At least 3 hospital stays in the last year. Each stay should be at least 1 month apart.
- Having a collapsed lung that requires a chest tube
- Needing mechanical ventilation
- Having lung damage, a lung transplant, low blood oxygen levels, or CF-related diabetes
- Needing a feeding tube or g-tube
Residual functional capacity
You may still be able to receive benefits even if you do not meet the Blue Book requirements. A medical vocational allowance may be available. This is an SSA program for people who do not match the Blue Book description of being disabled. This benefit may be offered to people who can still do some type of work but not the job they once did. This is known as “residual functional capacity.”5
Applying for disability benefits
You can apply for SSDI or SSI online, by phone at 800-772-1213, or in person at a local Social Security Administration office.
The most important thing is to provide all the necessary documents. It can take some time to gather everything you will need.
These documents should offer proof of the medical reasons you are unable to work. It is also important to explain the progressive changes of CF. Your doctor will need to include dates that show the increasing severity of your condition and how this prevents you from working. You will also need to provide test results.
Once you apply, it can take from 5 months to a year for a reply. The timing depends on how complete and thorough your application is. You will get a letter approving your benefits or denying them. If you are denied, you may appeal.6
Once you are approved to receive benefits, your case will be reviewed every 7 years to make sure you still need the money.3
The application process can be tough. It requires complicated paperwork, including medical records and sometimes expert testimony. Ask your doctor to recommend a social worker or lawyer who can help you with the application and any denials. These people may increase your chances of getting approved for disability benefits.
The CF Foundation also offers legal help with SSDI and SSI applications through its Compass program at (844) 266-7277 or firstname.lastname@example.org.
Learn more about applying for social security disability with CF.
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