Ask a Case Manager: Picking an Insurance Plan and Understanding Social Security Disability
Dec. 7, 2017 | 4 min read
Anne Willis

After receiving great feedback from the cystic fibrosis community on the first post in our “Ask a Case Manager” blog series, we're excited to answer more questions from the community about your CF-related challenges.

As we near the end of the year, many people may need to select a new insurance plan or make changes to the one they already have. Here, Cystic Fibrosis Foundation Compass case managers give advice on what to consider when choosing a plan, as well as free resources available to help the CF community navigate federal programs for people who are disabled.

"I have a 15-year-old son with CF. What should I look for when signing up for health insurance?" -- George, 50, Michigan
Sharkara Grant, Compass Case Manager

We often hear from people with CF and their families that picking an insurance plan can be difficult, and we know that understanding your health insurance options can be challenging.

When deciding to sign up for health coverage, you may have several options, such as employer-provided health insurance, private health insurance, or a plan on the health insurance marketplace. There are specific times called open enrollment periods when you can sign up for these plans or make changes to coverage you already have.

A smooth transition from an existing plan to a new plan requires some planning to navigate your insurance options. Your plan will influence which doctors and hospitals are in-network


, which treatment plans and prescription drugs are covered, and your out-of-pocket costs, so knowing what your plan covers is important.

But before selecting a plan, you should consider your needs and the needs of your family. Some important questions to think about are:

  • Is my CF care center covered?
  • Is my care team covered?
  • Are my medications covered?
  • Am I eligible for subsidies or copay assistance?
  • How are hospitalizations, home health, outpatient services, and durable medical equipment covered?
  • What can I afford?

When considering what your financial situation is, remember that the monthly premium is not the only expense you'll face next year. You'll also have to pay any out-of-pocket costs associated with your care. Because many people with CF require frequent medical care, the plan with the lowest premium may not necessarily be the best one for you.

Choosing a plan on your own can be a daunting task, but our experienced Compass case managers are here to help you find and compare your options so that you can choose the best one for you.

"What is the process of receiving disability benefits while retaining my life savings?" -- Vin, 41, New York
Erin Fleming, Compass Case Manager

Many people with CF apply for Social Security Disability (SSDI) or Supplemental Security Income (SSI), which are federal programs that help people who are disabled. The Social Security Administration (SSA) website lists the disability evaluation criteria for children and adults with CF.

The SSA sets strict guidelines to determine if an individual meets the disability eligibility requirements to receive benefits and sets rules to continue to receive those benefits. The application process can often be time-consuming and confusing, so working with an experienced attorney can increase the chances of your application being approved.

The CF Foundation funds the CF Legal Information Hotline®, run by Sufian & Passamano, LLP. You can contact the hotline for general questions about Social Security benefits, including how to keep your savings while receiving disability benefits.

If you are interested in applying for Social Security benefits, the CF Foundation also funds the Social Security Project (SSP), which provides free assistance by Sufian & Passamano to help with getting and maintaining SSDI/SSI benefits.

You can contact Compass to be connected with either of these resources.

For More Information

If you are dealing with any of these issues or need help with a CF-related challenge, a Compass case manager can work with you to understand your options. Call us at 844-COMPASS (844-266-7277) Monday - Friday, 9 a.m. - 7 p.m. ET, or email us at

You can also submit your own question for the next edition of “Ask a Case Manager.” We look forward to continuing to help the CF community navigate their challenges to live full, productive lives.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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As Senior Director of Patient Access Programs at the Cystic Fibrosis Foundation, Anne oversees CF Foundation Compass, a personalized service to help people with CF navigate complex insurance, financial, legal, and other issues. Before joining the Foundation, she spent a decade in oncology with a focus on advocating for and building programs to help people live with, through, and beyond a cancer diagnosis. She holds a master's degree in communication from Auburn University. Originally from Houston, Texas, Anne now lives in Hyattsville, Md., and enjoys traveling the globe with her husband.

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