Dysautonomia (Autonomic Dysfunction) Community
Social Security, Medicare, Medicaid, etc.
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Social Security, Medicare, Medicaid, etc.

This thread will primarily be for discussion of the process of applying for Social Security benefits, but I think questions about Medicare, Medicaid, and Home Health Waivers tie into that as well, and probably also in some instances questions about applying for food stamps (EBT), heating assistance, prescription discount cards, and other financial need based assistance so for now we'll leave things open and if it gets too messy and confusing we'll split things into separate threads as need be.  

My first and foremost recommendation is this:  apply, apply, apply.  Get applications for everything you can get your hands on and fill out anything that you think there's even a *shred* of possibility that might be a fit for you.  Sometimes you will be surprised at which things come through and which don't.  
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Helpful websites:

Regarding if you qualify for SSD:
http://www.ssa.gov/dibplan/dqualify4.htm
http://www.ssa.gov/dibplan/dqualify5.htm
http://www.ssa.gov/dibplan/dqualify6.htm
http://www.ssa.gov/disability/professionals/bluebook/listing-impairments.htm
http://www.ssa.gov/dibplan/dqualify10.htm

If you didn't see it on the other thread, here's the article that has the severity rating chart for POTS that may be helpful for doctors helping you in applying for disability:

(first URL for view as html, text will be tiny; second URL downloads pdf to your computer)
http://74.125.155.132/scholar?q=cache:UsdkQe2OXTwJ:scholar.google.com/+concise+guide+to+diagnosis+and+management+grubb+kanjwal+2006&hl=en
http://www.iranep.org/Articles/POTS%20%20JCE%202006.pdf

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When you fill out the application, you need to understand what they are looking for when they read it and speak directly to that.  Look carefully at this:

http://www.ssa.gov/disability/step4and5.htm#Q4_2

Keep detailed records of the ways in which your symptoms interfere with your duties at work and even your normal activities at home.  If you faint 1/4 times you take a shower, that interferes with your ability to be gainfully employed because people are expected to show up to work clean.  It may sound silly, but you really need to spell these things out in great detail.  The blanks on the forms are small.  Attach typed pages to accommodate as much as you feel you need to say to answer everything FULLY.  Giving specific examples can help illustrate your point.  I will hunt through my filing cabinet for my copy of my application to try to find a sample question and answer to post.  
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Also, it really is best to track down medical records yourself.  When I first applied for SSD, the majority of my records were at one hospital/medical complex.  I checked with SS to make sure that place sent my records, and was told they did.  However, after I was denied, it turned out they only sent about 5% of my records, and it was all allergy testing, etc, rather than my tilt test, EKG, and cardiologist's notes.  I was extremely ill when I started the process, so I trusted others to do their job right.  Don't do that!  Make sure anything important gets sent to SS.

Also, disability lawyers are required to take your case with no payment up front.  They take a percentage of the back pay if they win, with a maximum of $3500 or $5000 (can't remember which).  So get a lawyer and let them track down your records if you're super sick.  You won't have to pay a thing!

Just for a laugh: I was told I could continue my regular work in a chemistry lab, as long as I stayed away from heavy machinery and heights.  Never mind the nasty chemicals I was carrying around as I pass out!
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I have recently applied for Disability Living Allowance - DLA (UK).  I am still awaiting a decision as a report is outstanding from my consultant.  I had an appointment last week and this form was sitting in my notes uncompleted.  I am now concerned as the Dr I saw did not have a clue about POTS or my history - she thought my symptoms were dizzyness and palpatations!!!  The majority of my symptoms, including the fact that I could not even tolerate sitting up for well over 2 months and other important facts.  I am worried she will not give an accurate account of what I am experiencing.

If I am granted this I have been told they will date it back to august which is good.  I will post the outcome here, so fingers crossed.  
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Thank you. A lot of good advice.

I applied for Short Term Disability with the Company I worked for (recently laid off, unfortunately), and was denied. My Doctor did not provide sufficient information to them (I have no idea what he supplied, but more than likely it was a case of no amount of information would have been sufficient).

I find it "interesting" that this same Insurance Company denied my application for Long-Term care Insurance based on the same medical history and treatments (as me being a poor risk, because I was in such poor health), but then denied my claim for Short Term Disability, based on the same medical history, and symptoms.

I'm quite sure that my application to SSD will go the same route, no matter how sick I am.
Unfortunately, mu diagnosis is not based on some definitive test, that proves I have dysautonomia, but on medical history, symmptons, and numerous tests that eliminate other, potential, causes.

Mar


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Are you able to get a tilt table test (TTT) to establish your diagnosis?  This should be available at a major teaching hospital (often affiliated with universities).  24 hour urine catecholamines can be sent from anywhere in the country to Mayo for interpretation (not sure which other labs do this test; that's where mine were sent).  More extensive testing such as QSART, TST, radionuclide hemodynamic testing, blood volume, valsalva, pupillary reflex, and other autonomic testing is available at specialized autonomic clinics at a handful of hospitals in the US.  (See the following link; note that TST--thermoregulatory sweat testing is being set up at Cleveland Clinic and will be available in the near future but last I knew was not currently available there.)

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

As we've discussed at length in other threads on the forum, it is unfortunate that the major autonomic testing clinics are all clustered in one area of the country.  However, for those with the means to get to one of these centers, this testing does provide much more extensive information than a basic tilt table test and cardiovascular workup.  It's possible this would provide a distinct advantage in proving disability.  

As we've discussed elsewhere, Dr. Mathias is the expert in London who does this testing.  I also have information for a Dr./facility in Canada if anyone needs that.  Sorry, I really need to get those added to our experts health page.  I'll try to get that edited in this week if I don't forget.  Gentle reminders will not be resented!  :-)  
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666513_tn?1256921055

Thank you.... more good information :-)

I wasn't diagnosed with POTS, so I'm not sure a tilt-table test is meaningful (or is it?)


Mar
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A tilt table test is often part of the diagnostic workup for orthostatic intolerance; without knowing your case I can't say whether it would be warranted or not.  If you have orthostatic intolerance but not orthostatic hypotension, or you have syncope not explained by a known cardiac condition, a TTT might be helpful. There is an excellent explanation of the diagnostic significance of TTTs, complete with easy-to-understand graphics which elaborates on orthostatic intolerance vs. orthostatic hypotension, symptoms vs. signs, baroreflex and the sympathetic portion of the ANS, the roles of valsalva/ANS testing and tilt testing in distinguishing different forms of dysautonomia, and the differences between MSA/PAF/Parkinson's/NCS/POTS/Baroreflex failure/CFS-ME/NMH.  

To read this you need to download the entire NDRF guide (it comes in sections so you have to make multiple downloads of each successive section) or just the section that is relevant to this discussion, if you so choose; I recommend getting the whole guide as it's an excellent reference!  The portion to which I am referring here is on pp. 79-93 (Note:  this is going by the pagination marked on the actual document itself, not on the pagination your PDF viewer will add independently, as it will start back at page 1 on each successive segment of the guide, rather than threading them together continuously as they are numbered within the document.)  I hope that makes sense.  The section header on page 79 is "What is Orthostatic Hypotension?" and in reading through page 93 you should be reading through the section entitled "What is Orthostatic Intolerance?"  

These pages are found in SecA_pp59-134:  "Dysautonomias." The section following that describes various tests, many of which are available only at the major autonomic clinics.  Here is the URL to the NDRF handbook:  

http://www.ndrf.org/NDRFHandbook.htm
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Ack!  Forgot to mention ... there's a chapter on Social Security and Disability in the NDRF handbook that's probably a Must-Read for anyone applying!
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Excellent point Heiferly!  Here is a link to the chapter that Heiferly mentioned in the NDRF:

http://www.ndrf.org/NDRF%20Patient%20Handbook/SecB_pp265-274.PDF
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Grrrr.... visited the neurologist yesterday... she's totally disinterested in Dysautonomia. She's testing me for MS and Myasthenia, to rule those out...but won't do any testing, nor recommend anyone (beyond telling me to check out University Medical Centers).

On a brighter note, I'm up to 80mg per day of propranolol, and am starting to see some benefits in exercise tolerance and my daytime breathing (I can now make my bed without resting 2-3 times... well, I've managed that twice now).

So, I guess if MS and Myasthenia Gravis are ruled out, and I want to pursue a definitive diagnosis, then I'll have to investigate visiting the Clevland Clinic, or the Mayo in Minnesota.

Mar


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A little update on my application for Disability Living Allowance (UK).  I put in a claim in August and was refused, I put in an appeal and was refused again.  Then my consultant cardiologist from the hospital put in a medical report for me and they have awarded me high rate Mobilty and Middle rate Care.  They are now going to backdate this to august of last year!!!  

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Wow that is great news!  I'm sure this will give a bit of relief knowing that's been taken care of.  Happy for you : )
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Congratulations!  

Laura
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Thank you guys, I hope this also encourages others to get the help they need x
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Hi, sorry about your struggle. I have been to Mayo Clinic (ten years ago and for follow up there after) and was diagnosed with dysautonomia (multiple systems), had a dual chamber pacemaker placed and have found that traveling to speciality clinics is necessary. I also have been to Cleveland Clinic at the end of last year and found each of those to have some helpful information for ways to help and to better quality of life. I am scheduled to visit Vanderbilt in December of this year. The good news is that after visiting these hospitals, the specialist will guide your care with a local doctor for you. Good luck! Oh and one more thing-- Dr Jeager at Cleveland is very good for any and all heart issues related to dysautonomia.
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