Not only am I a lyme disease sufferer, but I am also a trained social worker. Because of this, I understand both sides of the coin, and have learned (the hard way over time) how to navigate the system. Life has created a very unique path for me to walk and I would like to share my knowledge with those of you who are financially desolate, unable to work due to lyme disease, and having a hard time navigating the system.
A quick look at my path to SSD (Social Security Disability):
First of all, you should know, it took me four years to get approved for SSD. It is a lengthy process and you WILL be denied the first time you apply. Do not take this personally or let it bring you down in any way. It has nothing to do with your worthiness. If you have lyme and you cannot work, you are eligible for SSD and Medicare, it is just that you have to be persistent and go through the hoops the system has created. On top of that you need to have a medical doctor you can trust who can and will document your case, the best bet is to have a LLMD (Lyme Literate Medical Doctor).
When I first applied, I was denied and gave up. I felt that I must not deserve it. During that time I was in Georgia receiving IV antibiotic treatment from a very compassionate doctor. I stopped by a disability advocate office just to ask a few questions. It was, ironically, a social worker (this was before I became one) who sat me down and explained the process to me step by step, including the obstacles I would face. She told me that unless you are blind or a quadrapelegic, you will be denied your first time, and maybe even through your appeals. Once you are denied the first time you have 60 days to appeal the decision. I was denied 3 times, and that is the magic number. On my third denial I contacted a lawyer to represent me, I found out that this is sometimes the only way to get through the red tap. The lawyers who take on disability cases only take a percentage of your back pay, they require no money paid up front. Once I got to this point, I received a letter from the court hearing office informing me that because we were “short” on judges in Nevada that I would be waiting 24 months to get a hearing. At this point I had sold my home and spent all of the money I had on treatments, but was still getting worse. I was desperate, so I wrote everyone I knew and asked if they would contact my senators (Reid and Ensign at the time) about my case. There was no way I could have held out another 2 years just for a decision, I needed health care and income. My mother also wrote to the senators and contacted their offices. Within three days I got a call from Harry Reid’s office saying they received over 130 emails on my behalf (Thank you to all those people!) and that they would be assigning me an advocate and helping me with my case. I got a court hearing within 2 months! It was a fight, a long hard one on top of the fight for my life, but in the end I won. I hope my story inspires you to keep fighting and pursuing this. While it is not much money, it comes with health insurance and has been a huge blessing that has helped me get a lot better and survive.
Being that lyme is totally misunderstood by doctors just for us to get treatment, the path to get disability income and health care is even more difficult. Some people with lyme can work. And I believe you should if you can. But when the disease becomes too overwhelming, this is a solid alternative that can provide income and health insurance. I am an advocate for all lyme patients because I know first hand it’s devastating effects.
Something you should know about SSD is that it is NOT welfare! It is an insurance policy that you pay into while you are working. So if you become ill after working in the system, you are entitled to benefits!
Steps to take:
1. Go to your local social security office and ask for an application for SSD and Medicare. Or visit them online and do the application there: http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/326
2. Make sure to be going to a doctor that is knowledgeable of lyme, and get all of your records (from all the docs you’ve been to). Keep track of all the things you do to try and get better, and document the abilities you’ve lost.
3. Turn your completed application in: wait for your answer which will most likely be a NO the first and maybe even through your third appeal. If you get it on the first try, congrats, you are lucky!
4. Appeal, Appeal, Appeal!
5. Get an attorney that specializes in SSD cases in your area. They take a certain percentage of your back pay, if you are approved. Otherwise you pay nothing.
6. At your hearing: state your case and fight for yourself, bring family members in, and find ways of measuring how lyme has affected you.
7. Keep your head up, and know that there is hope out there for a cure! Meanwhile, be willing to accept help from all directions and develop coping mechanisms that allow you to live your life!
When Filing For Disability by Jennifer Pitts, Leslie Wermers, and Anna Willo Hart
These are notes compiled from 3 different people on applying for disability – notes written by Jennifer Pitts, Leslie Wermers (may she rest in peace), and myself, Anna Willo Hart. As long as this writing is kept in its original form, anyone is welcome to share it with people who need this information! I’ve been told by several friends that this was the first bit on disability that didn’t make their heads want to spin off; I take that as a good sign! lol!
When filing for disability, determination is usually not based on a diagnosis but is based on one’s ability to function. It is also not based on the doctor’s opinion that one is disabled, but rather on the documentation of one’s ability to function, number of systems affected, number of symptoms, severity of symptoms (etc), that is in one’s file.
The SSA has what is called the Adult List of Impairments. Under 14.00 (Immune System Disorders) you will find Lyme disease listed under 14.09 – Inflammatory Arthritis.
The spectrum of inflammatory arthritis includes a vast array of disorders that differ in cause, course, and outcome. Clinically, inflammation of major peripheral joints may be the dominant manifestation causing difficulties with ambulation or fine and gross movements; there may be joint pain, swelling, and tenderness. The arthritis may affect other joints, or cause limitation in ambulation or in the performance of fine and gross movements. However, in combination with extra-articular features, including constitutional symptoms or signs (severe fatigue, fever, malaise, involuntary weight loss), inflammatory arthritis may result in an extreme limitation.
Your reason of disability is how these diseases have disabled the body as a whole. You are disabled because: fatigue, neuropathy, seizures, fibromyalgia like pain, parkinson’s like tremors, ataxia, tummy troubles, short term memory problems, muscle malfunction, joint pain or stiffness, headaches, palsy, brain fog, weakness or paralysis, insomnia, impaired cognition, and so on. If there are mental health aspects, include those too — depression, anxiety, panic, PTSD, mood swings, distorted memory, crying for no reason, rage, etc..
Look from head to toe and describe WHY you can’t function. Not: because I have Lyme & co-infections, I can’t work. That’s a guaranteed denial.
Review the list of impairments and go into them further. Look up symptom lists of Lyme and TBIs in general and mark down every little thing you suffer from. Leave nothing out. Two of our favourite symptom lists are from from PA Lyme’s “The Basics” which is available online (google “PALyme The Basics” without the quotations to find the URL to download the PDF file) and Dr. James Schaller’s Symptom Lists: http://www.amazon.com/Checklists-Bartonella-Babesia-Lyme-Disease/dp/0984088954/ref=sr_1_1?ie=UTF8&qid=1376519537&sr=8-1&keywords=Dr+James+Schaller
The diseases are the causative factor, but, the most important part of disability will be affected by the impairments listed.
Here is a good link that takes you through the process from the viewpoint of the SSA:
I recommend that anyone seeking disability benefits purchase the Insurance Issue of Lyme Times from LymeDisease.Org (formerly) CALDA for $10.
It is HIGHLY valuable in explaining how the disability process works with Lyme, includes many form letters for your use and is all around brilliant.
I also suggest purchasing (or checking out from the library) the Nolo’s Guide to Social Security Disability Getting & Keeping Your Benefits: http://www.nolo.com/product.cfm/objectID/03C58536-EEDE-41D7-90FC0E4DAA51B476/213/
You should absolutely download the: Worksheets from the Disability Workbook ($5)
(http://www.disabilityfacts.com/Bookstore/e-book_Form.html – close to the bottom of the page — the full workbook can be bought for $20)
It will make the process so much easier, especially for the brain fogged like us. :)
Include all of the worksheets, if this is an appeal don’t forget your appeal letter (Nolo should give a good example as does the Lyme Times Insurance Issue) and also get the SSA into your medical record — send the worksheets to your doctor with a note that they need to be sent to the SSA when medical records are requested.
You should also consider the:
Disability Evaluation in a Nutshell the 3 minute guide to effective medical reports.
(http://www.disabilityfacts.com/Bookstore/Booklist.html – it’s targeted towards the physician. $5)
You will want to include peer reviewed information about Late Stage/Chronic Lyme.
Relapse/Persistence of Lyme Disease Despite Antibiotic Therapy
Seronegativity in Lyme borreliosis and Other Spirochetal Infections
Some other great info to include can be found on this LymeInfo page: http://www.lymeinfo.net/neuropsych.html (lots of peer reviewed literature there!)
Include the CT Attny General’s finding on the IDSA 2006 guidelines:
Add the fact that the IDSA was forced to review their guidelines.
Add any information that is pertinent to you, information the people looking over your case should know: the Poughkeepsie Journal articles on Lyme, the newer studies about Rhesus Monkeys and Biofilms, for example.
It is known that 70% of cases are denied via initial application, but a very high proportion of them get approved when it goes before an administrative law judge (I think after 2 appeals).
In the documentation you send — whether it’s an appeal or the first application — as a cover page, list the items that you are enclosing.
For example –
*Social Security Questionnaire
*Worksheets from the disability workbook (list individually)
*Residual Functional Capacity Questionnaire
*List of doctors (the worksheets have those)
*ILADS Guide to Lyme
*ILADS Guide to Lyme for Psychiatrists (http://www.ilads.org/PsychiatristBrochure.pdf)
*ILADS’ Evidence-based guidelines for the management of Lyme disease (http://www.guideline.gov/summary/pdf.aspx?doc_id=4836&stat=1&string=lyme)
*Findings of Connecticut Attorney General regarding the multiple conflicts of interest and flaws of the IDSA Guidelines
*Letters from Friends and/or coworkers (insert how many)
*Medical records from xyz doctors that back up the individual troubles (sleeping, pain, neuro, gastro, etc)
*Any educational materials you want to include
Also, if they are unable to obtain your doctor’s information, or if they have any questions, ask that they contact you directly before making a final determination on the claim.
Call your caseworker to check status. Be very friendly — even if they lose something. It does absolutely no good to get angry, in fact that could be damaging to your case.
When filling out worksheets or applications, make sure to emphasize what you can no longer do — NOT the work-arounds you’ve put in place.
“I can no longer walk more than 2 blocks unassisted,” rather than, “I have to use a cane to walk more than 2 blocks.”
Or: “I have gotten lost a number of times on familiar routes,” instead of, “I bought a GPS to help me find my way home.”
Some other great links to peruse:
..especially the following link, though the above worksheets captured much of the information. It can be edited as you need in order based on what information you have. VERY LONG but good:
Okay, we know that’s lots of random info.. but we hope there’s something helpful in here for everyone who needs it!
Disability seems like this huge task to overcome, but if you sit down with the right worksheets this job can become a lot easier.
Les, Jenn, and Willo