Applying for Disability Benefits

Posted on April 02, 2018   |   
Author: Gretchen   |   
13 Comments   |   
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This blog post was written by Cynthia Flora, patient advocate and head of NTM Support Group

Applying for disability with the Social Security Administration (SSA) can be a daunting task, but also is working with chronic lung conditions. My best piece of advice is EDUCATE YOURSELF AND PUSH FORWARD. If your symptoms and/or side effects from medications are making it difficult to work, think about getting more information and possibly applying. Typically, this process gets more difficult each year as the agencies have less money and our population ages. The level of difficulty will depend in part upon your local office.

I was lucky enough to find knowledgeable, kind employees that I could sit down with and actually helped talk me through the process. Go in armed with a clear one-page synopsis of dates, diagnoses, symptoms, and ways your condition affects your work, etc. You can always expand from there. If you cannot go in person and have to do it via phone, I would not recommend spending much time with a worker who is not being helpful, even though you may have to wait for another phone rep. Keep in mind that a bit of kindness and gratitude on the phone often goes a long way when you are asking someone to help.

Everyone is on his or her own journey. As for me, not long after I began a three year stint on the "big three antibiotics", it was obvious to me that my new job should be staying well. Exhaustion and the fear of getting the flu or an upper respiratory infection every time I used a phone, computer, or fax machine that a sick co-worker had just touched made work a huge impediment.

In general, the older you are, the sicker you may be, and the more difficulties you face doing your current job are key factors. You do NOT want to put a brave face on your condition. You want them to understand how difficult your worst days can be. If awarded disability your monthly payment will be the amount you would receive had you remained working and applied for Social Security at your full retirement age. This varies with age due to the government chipping away at benefits. You can look it up on your individual SSA account or call the SSA if you can't figure it out.

https://www.ssa.gov/disability/

https://www.disabilitybenefitscenter.org/social-security-disabling-conditions

The government has a blue book that lists diseases that qualify for disability. Bronchiectasis is one of them, as are numerous immune disorders. You can find the list at https://www.ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm#3_07

Chronic lung infections are another category, which is where NTM would fall. It used to be listed as an actual illness, but I could no longer find it when I looked to write this post.

That does not mean that NTM lung disease will not be an illness that helps you qualify for disability benefits. Often times, it is a combination of conditions that makes people eligible for this benefit. The key will be documentation and comments from doctors treating you for each condition. The end goal is to prove that you are no longer able to perform your current job or one similar.

Do not let yourself get caught up in all the particulars for respiratory factors. I did not have a FEV or O2 count low enough to qualify, but I did have fairly extensive bronchiectasis and had been on the big three for NTM/MAC for more than a year.

I also have Sjogrens Syndrome (which qualifies) although I did not have very debilitating symptoms as yet. Be sure to document any pathogenic infections such as Pseudomonas aeruginosa or Stenotrophomonas maltiphilia. Note any hospitalizations and duration of antibiotics or corticosteroids. It is up to you to prove you are ill and that your symptoms, side effects from medications and the demands of your treatment protocols are making work difficult.

Don't be shy about admitting to experiencing side effects such as brain fog (a real side effect from antibiotic use) if this applies to you, as brain fog makes it really difficult to complete job tasks. If you suffer from depression due to medication side effects or the overwhelming stress of dealing with a progressive, chronic condition list it as a side effect. Even if you are experiencing depression but are not taking drugs, you should still list it. You should also mention it to your general practitioner so it is documented.

Presentation is key. If you have a doctor that realizes your life is REALLY difficult and the stress and germs and demands of work are likely a big drag on your overall health you may succeed. I succeeded and am now able to focus on staying well instead of dragging myself through another day at work. This has made an enormous improvement in my overall life.

If you are denied first time around, as many people are, start the appeal process immediately. There is a big backlog in many area's judicial systems so it can take many months to get there. Hang tough. Keep documenting your illness.

One weird side effect...you will be forced to go on Medicare after you have been receiving Social Security Disability for two years. I actually had more choices and better health insurance through the Affordable Care Act than under Medicare. But it was well worth not having to drag myself to work those four extra years.

13 Comments



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  • I know applying for disability benefits has been a conversation here. I hope you find some helpful hints and support here.
    Reply
  • Gretchen,
    Yes, this information is very important for patients going through the application process. It is a process that no one truly ever wants to face ; however, there comes a time when one must do so. I just want to mention that I have heard that 50% of the applications , at least get denied the first time around.
    Sadly, a lot of people apply for disability who truly are not disabled; hence, the rules and process are tougher to weed out these individuals.
    Reply
  • Thank you. Valuable info as I find it difficult continuing work
    Reply
  • MLS
    Applying for SS. disability, two things made it much easier for me and I received it on my first try. At the time I was 56.

    1. Hire a lawyer, try to find one that worked for SSA. Your doctor can probably give you a reference. The lawyer’s fee is set by law.

    2. See your own doctor, I was originally told by SSA that I would have to be examined by one of their docs, not true as long as your doctor is willing to do the paperwork.


    Reply
    • Great suggestions.
      If your doctor completes the forms, is there still a possibility that the SS doc will see you as well?
      Reply
    • Thank you for sharing! I hope these 2 pointers make the path a little easier for some others.
      Reply
  • Kel
    I applied for disability on my own the first time, knowing that it would probably get denied. I included all the paperwork. Tons! I then hired a disability attorney that was recommended to me by someone who had success. She helped me apply the second time, letting me know that often people are refused until a hearing with a judge. This has taken over two years so far and she informed me that most likely I will see a judge this summer. The refusals from disability state that with my advanced degrees, (I am now a retired high school visual arts teacher), I am capable of working many types of jobs, thus no disability. Even with precise details on how working in public education made my disease worse, often around contagious flu, viruses that led to reoccurring lung infections, (PIC lines), etc...I was still told I could do my job. Not! I was unable to speak to the 175 students daily w/o coughing fits, lift equipment, etc... with a PIC line in my art, plus the undeniable fatigue. I even have difficulty now talking on the phone for bill paying and such w/o coughing. Hopefully, I will get the disability? But, who knows? Frustrated and often fight depression (which I also document with doctor) because of the illness. Despite all this, I am still grateful for many things. :)
    Kelli

    Reply
    • Kel
      PIC line in my arm, not "art" haha
      Reply
    • Dear Kel,

      Hello! I feel for you. You are not alone on this journey. So many do not understand the impact of NTM/Bronchiectasis has on a patient's life since it is usually an invisible disease. Multiple educational degrees or no formal education at all does not matter when you are sick; the fact is the fatigue which impedes patients from being all that they can truly be, or of reaching their true potential.
      I hope and pray that you can get through the next month some how since the school year is almost over. Do you have sick time, vacation time you can utilize? Have you thought of contacting your local representative to have him/ her assist you in pushing up your court date?
      Some representatives will be able to assist you in this process; no harm trying.
      Hopefully, you will be approved by the judge early this summer or sooner.
      Reply
    • Kelli, thank you for sharing. I am sure it is difficult to fight for what you need, which is completely exhausting on top of taking care of normal day-to-day responsibilities. Depression and anxiety are real occurrences with many chronic illnesses and the circumstances they create. I wish you the best on pursuing this further this summer and I hope you get the outcome you need. Your attitude of expressing gratitude is heart warming to me-so many with far less struggles can't even do that most days. Take care of you and keep us posted on your journey. It could help others as they begin their trek down this bumpy path.
      Reply
  • Hi Gretchen- thank you for writing this great article!

    Reply
    • Gretchen,
      Hello! I picked up a book at the library yesterday, entitled, Nolo's Guide to Social Security Disablity-Getting and Keeping Your Benefits, Dr. D. Morton, published March, 2018. It is a comprehensive book covering the most frequently asked questions.
      Reply
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