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Quick Guide To Applying For Disability With CF

Applying for Social Security Disability can be a daunting and overwhelming process for adults living with cystic fibrosis (CF) who are unable to work because of their health status. If you are worried if it’s the right step for you, you aren’t alone. Transitioning from working to solely focusing on your health can be a difficult and isolating step to process emotionally. In addition, the necessary requirements, paperwork, and waiting period during the disability application process can be very stressful in an already delicate situation. Here’s a quick guide to disability from someone who has been there.


There are two federal programs that help individuals who cannot work with an approved condition make an income and gain access to health insurance. Although similar, the two programs are distinct and serve different populations.

What is SSDI?

Firstly, Social Security Disability Insurance (SSDI) is a program for people who have worked in the past and have earned enough “work credits” to qualify.1 The monthly benefit received is based on their lifetime earnings. Individuals with SSDI can also work part-time while receiving benefits making less than $1,260 a month of income.2 After a 24-month waiting period after you start receiving benefits, individuals qualify to receive Medicare health coverage.1

What is SSI?

Secondly, the other program is called Supplemental Security Income (SSI). SSI is often for individuals with a disability who did not earn enough work credits in the past to qualify for SSDI and have limited assets and resources.1,3 According to the Social Security Administration, limited resources is defined as having less than $2,000 in assets for an individual and $3000 for a couple.1 Individuals who qualify for SSI receive health coverage as well through their state’s Medicaid program.

Medical eligibility requirements

The medical eligibility requirements for CF can get quite complicated and specific. The Social Security Administration has detailed the medical requirements to qualify for disability benefits for both children and adults with cystic fibrosis.4,5 Included in your application, clinical notes from doctors' appointments, hospital stays, treatments, and tests results from the past year are used to determine whether you meet the requirements or not. If you are considering applying, check with your local CF clinic to ensure they are keeping a detailed account of your clinical notes and any pertinent information for your case.

Application process

The SSDI/SSI application process can be lengthy and detailed from start to finish. Depending on individual factors, it may take 3-5+ months from the time you submit your initial application to the time of your determination letter. Here is a quick summary of what to expect when beginning the process:1

  • Telephone call with SSA to gather information
  • Form SSA-16- includes information about yourself, illness, daily living, work history, tax information, bank information, and medical evidence
  • Submission of application to SSA
  • Possible request for additional information
  • Determination letter with benefit amount
  • Appeals process if denied

CF Social Security Project

If you or a loved one are considering applying for disability, I highly recommend contacting the CF Legal Information Hotline to speak with one of the attorneys with the Social Security Project (SSP). CF SSP is a free service provided in part with the CFF to help individuals with CF apply for social security benefits.6 They are a dedicated and knowledgeable legal team with years of experience and an in-depth understanding of the needs of the CF community. They can walk you through the application and appeals process and communicate with SSA on your behalf as your representative. Contact CF Compass (844-266-7277) and they can help you get in contact with CF SSP.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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