Online Insurance Guide


Welcome to our Online Insurance Guide! Whether you’re a patient, family member or medical professional, you will find tools and materials that allow you to advocate for timely access to affordable treatment.

Use these resources to learn about insurance, troubleshoot insurance problems and connect with other patients who have overcome their own insurance challenges. 

Coverage Connection

Coverage Connection is PHA's monthly e-newsletter providing PH-related insurance updates. Read the latest information below or sign up to receive monthly updates via email.

Working While Receiving Social Security Disability Benefits

While these are the official SSA rules for working while receiving SSD benefits, SSA reserves the right to consider each case on an individual basis.

Social Security Disability (SSD), is a federal program run by the Social Security Administration (SSA) that provides assistance to people with disabilities. PHA knows that with PH, some days are better than others, and you may not be 100% sure if working with PH will be the best fit for you. Fortunately, the Social Security Administration (SSA) offers a trial work period for those receiving SSD benefits to test whether or not returning to work will be feasible. If you are already receiving SSD benefits, you may be able to return to work part time without losing your benefits. Similarly, if you are thinking about applying for SSD benefits, but would like to keep working part time you may be able to. Read below to find out more about SSD and working.

Learn More, Get Help

Contact CVC for Help with your SSD Application or appeal
(888) 267-1440

Contact PHA’s Treatment Access Program
(301) 565-3004 x773

SSA Guide on Working While Disabled

SSA Overview of Extended Period of Eligibility

Contact SSA Directly

Working While Applying for SSD

SSA states that you can work part time while applying for SSD benefits, as long as you do not earn above the SSA substantial gainful activity amount ($1,130/month for 2016 or $1,820 for applicants who are blind). It is worth noting however, that not only does SSA look at the amount you are earning, but they also take into consideration the number of hours you are working. For instance, if you earn under the SSA limit, but are able to work 30 hours, this may potentially jeopardize your chances of getting your application approved. PHA recommends contacting the Caring Voice Coalition (CVC) for help with making a strong case for your SSD application.

Trial Work Period

For those already receiving benefits, SSA offers a trial work period, where you can test your ability to work for nine months. During those nine months, you will receive your full disability benefits, regardless of how much you make as long as you report your work to SSA. For 2016, any month in which you make over $810, or work more than 80 hours if you are self-employed, is considered a trial work month. Your trial work period will end once you have worked nine months in a 60 month period.

Extended Period of Eligibility

If, after your trial work period ends, you still feel as though you can continue working, you may do so and continue to receive your SSD benefits as long as you do no earn more than the SSA limit ($1,130/month or $1,820 if you are blind for 2016). If at any time after your trial work period ends you earn more than the SSA limit, you will lose your SSD benefits. At all times during your trial work period, and after, you must continue to report your earnings to SSA, even if they are under the SSA substantial gainful activity limit. Keep in mind that during this time SSA may decide to review your condition. In the case that your SSD benefits are terminated because your income exceeds the SSA limit, you will be eligible for expedited reinstatement, meaning you will have five years to request to have your SSD benefits reinstated without having to file a new application or wait for your benefits to restart while your condition is under review.

Need help with your SSD application or appeal? See the box on the right for more information on how to contact a patient advocate at the Caring Voice Coalition and other additional resources.


DISCLAIMER: The Insurance Resources section includes brief summaries of complex subjects. They should be used only as overviews and general guidelines. The views expressed herein do not necessarily reflect the policies or legal positions of the Pulmonary Hypertension Association. These summaries do not render any legal, accounting, or other professional advice, nor are they intended to explain fully all of the provisions or exclusions of the relevant laws, regulations, and rulings of various private and public insurance programs. Original sources of authority should be researched and utilized.
Contact us with insurance questions, success stories or suggestions.
PHA is proud to be able to make educational materials and programs like these available for free to everyone because of the generous support from members of the community just like you. Donations are welcome!

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.