Jersey Girl Posted March 24, 2004 Report Share Posted March 24, 2004 Hi! My initial application was denied for SSDI yesterday--not totally unexpected. I live in New Jersey and don't know of a good lawyer to go to. I would like to file a class action suit on behalf of everyone with POTs who was ever denied. I believe that because this disorder affects mainly women--not that men are any less affected when they have POTS--that we are denied equal access to benefits. I went to the disinissues website and they don't list new york or new jersey attorneys. does anyone know of a successful lawyer in New Jersey that has handled an appeal?Also the Vanderbilt University website has an outstanding explanation of orthostatic intolerance and the future direction of research. Even though OI has many different causes, it shares an "abnormaly enhanced sympathetic drive to the cardiovascular" system. Future research there will study the estrogen dependent changes of the plasma. This center seems miles ahead of anyone else. Their web address is www.mc.vanderbilt.edu/gcrc/adc Quote Link to comment Share on other sites More sharing options...
justme Posted March 24, 2004 Report Share Posted March 24, 2004 My wife and I just started the SSDI process after a lot of soul searching. I hope that we have better luck. There are several people out here who have been approved. Many of them had to go through more than one appeal though as well. Quote Link to comment Share on other sites More sharing options...
denabob Posted March 24, 2004 Report Share Posted March 24, 2004 Hang in there thay almost ALWAYS deny the first request! It took me three tries and a really good lawyer ( I'm in WV) 16 months later I was approved!Not on POTS alone though...I have NCS so they approved me on that with POTS listed secondary. I'm not sure it's a discrimination thing but more in general how they handle most illnesses especially one that is so unknown and varies so much among patients.The best thing for you to do is research it as much as you can yourself use info you gather from this site and the ndrf look for research articles on POTS and help your lawyer (when you find one) you'll more than likely need to educate him/her first...I did!The Social Security office will provide you with a list of lawyers in your area because believe it or not they have to approve of your lawyer! Now that doesnt effect how well they represent you its just that they pre-approve a fee. Also be careful what you sign... make sure the lawyer only charges if you're awarded settlement!Make sure you mention the Chronic Fatigue that accompanies POTS even though it's not CFS that symptom carries alot of weight!Good Luck!Deanna Quote Link to comment Share on other sites More sharing options...
Roy Posted March 24, 2004 Report Share Posted March 24, 2004 I think most people get denied their first time. From what I have heard it looks like SSDI is doing this with alot of cases not just POTS. My brother who has autism was denied on his first try and he has a whole lifes time of proof of disability. 90% of the people in his support group have also been denied on their first try. My stepmothers friend is a social worker and she sai that most SSDI claims are being rejected on the first try because of alot of apply and don't really need it, but god knows us POTS people really do need it.I am worried that I will also be denied SSDI for POTS. I was recently sent a letter stating that my case has been reviewed and that I need to see one of their appointed doctors for "mental problems". As part of my application I listed all of the mental probelms POTS causes me. Now their sending me to a shrink! lol, for further evaluation.Maybe I'll get SSDI becuase they think I'm crazy? I'll still take it! In the end don't give up. Alot of us are going thru the same problems.Good luck and hang in there. Quote Link to comment Share on other sites More sharing options...
divine spark Posted March 25, 2004 Report Share Posted March 25, 2004 Jersey Girl,You might want to try the referral service of The National Organization of Social Security Claimants Representatives: http://www.nosscr.org/refer.htmlAlso, I am assuming you posted a request with the Disinissues group to see if one of the members can give you a referral? If not, then I recommend you do that also in seeking an attorney.Best Wishes. Quote Link to comment Share on other sites More sharing options...
denabob Posted March 25, 2004 Report Share Posted March 25, 2004 Roy- Dont worry much about "the crazy issue" I didnt list the pyschological part in my claim but they found it anyway My lawyer sent me to a counselor for a psyc evaluation. I didnt hear any more about it until my final descision was made.I got upset with the judge at my hearing and told him how much I didnt want to be there proving to them that I'm disabled because I DONT want to be disabled...I want to work but cant. I was upset not hostile but crying. I guess I made an impression because on my approval letter (that came 1 week later) they awarded me SSDI based on "NCS with symptoms of POTS and a mild mood disorder!" Just be honest and upfront and they will listen!Of course it took 13 months for me to get to the hearing level-2 denials prior to that step.and another 3 months to start getting paid!Deanna Quote Link to comment Share on other sites More sharing options...
justme Posted March 25, 2004 Report Share Posted March 25, 2004 My wife has NCS as well and gets severe migraines (almost always require hospitalization). The paperwork is unreal. We are prepared for a long haul. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted March 25, 2004 Report Share Posted March 25, 2004 I am really angry with my attorney. They promised to help with paperwork. But everytime I get some and ask for help they tell us that they don't DO that. Oh well! Quote Link to comment Share on other sites More sharing options...
Marg Posted March 26, 2004 Report Share Posted March 26, 2004 To ALL -SSA actually tells you on their website what their specifications are for SSDI. Failing a Tilt Table test (orthostatic intolerance) is one of them. I beleive another is Chronic Fatigue Syndrom (which most POTS patients have). I'm getting ready to go through the SSDI process with my daughter who turns 18 in May. Her cardiologist and pediatrician suggested it and said they would help in any way they can. Get your doctors involved, they should be able to help with the documentation.Good Luck to all of you. If I find anything else that I think will help, I'll pass it along to you. Hope you all will do the same.Margaret Quote Link to comment Share on other sites More sharing options...
divine spark Posted March 26, 2004 Report Share Posted March 26, 2004 Just about everything you need to know about the SSDI or SSI application or review process can be found at the following address: http://groups.yahoo.com/group/Disinissues/. This site and the information shared by its members is a gold mine for people with illnesses like ours.Also, Jenn, if you look under the topic, Disability Doctor, at ndrf.org, you will find a current lengthy post about finding an attorney. The topic was LTD insurance but some of the information is still relevant to SSDI. Quote Link to comment Share on other sites More sharing options...
WifeofPotsMan Posted April 3, 2004 Report Share Posted April 3, 2004 Everyone - I haven't written in a while. Busy working on my husbands claim for disability. We applied after he returned from the hospital in February 2003. We were of course denied on our first try. We appealed. On the second go around which started in July 2003 we have just received a notice that we have been approved. 1:D It?s now the beginning of April 2004. I haven't seen the first check yet, & the notice said that we would receive a second notice of just how much he will be receiving on a monthly basis. Our "official" notice of acceptance came March 12, 2003. So, as you can see.... I?m still waiting. I wanted to let everyone know that I did this without the help of a lawyer. I'm not in the law profession so everything I did I had to learn myself. For some I know that the lawyer is definitely the way to go due to the enormous amount of paperwork. How many times can they ask the same question 30 different ways? It seems really redundant. I can tell you a little of what I did. I had GREAT doctors that even though they aren't "specialist" in the POTS world, they knew enough to know that the recommended treatments were not working for my husband. I would get the notes from every doctor that my husband saw. At one time my husband had 9 different doctors. I followed up and got the results of every test - every note - everything I could get from his doctors. I would then read everything to see what the doctor(s) were saying in their notes that they might not be telling my husband & I. Let me just say that reading the notes is very enlightening. You don't really seem to get the doctors "full" opinion until you read his notes. Then I would compile a "package" to send to my husband?s caseworker at the social security disability office. I would write a letter with each package. There is also a website that has the information that the social security uses to see if a person meets their "qualifications" for receiving disability.http://www.socialsecurity.gov/disability/p...onals/bluebook/This is an enormous amount of information. I found the issues that applied to my husband & was very bold in my letters to my disability case worker & in my letter sited the categories that my husband fell under & that was why he deserved disability. I did her job in a sense for her. I didn't want any misunderstanding of my husband?s health situation. My husband had been symptomatic for 4 years. He had not worked in the last 4 years, but we didn?t have a diagnosis until July of 2003. I can?t tell you how many doctors we?ve seen over the last 4 years. It has been a frustrating journey. Moving on though I wanted to give a little ray of light if possible to let everyone know that this can happen for you. It took my husband a long time to accept that he was never going to be able to return to work. It?s even more frustrating when you are put through the disability process. We only were approved ?back pay? from July of 2003. I wasn?t really happy with that decision since we have doctor documentation over the last 4 years. This might be where a lawyer would have been helpful. But we?re not greedy & we?re just happy that we are going to be getting some help now. It won?t fix our lives or my husbands health, but it will help. If I can help answer any questions, let me know. Like I said I?m by no way an expert. I just couldn?t see why I would have to have a lawyer prove what my doctors were saying. Why should I have to give someone 25% of what my husband is rightfully entitled to? I think it?s a somewhat screwy situation. To all of you considering it and for those now going through the process ? good luck! Quote Link to comment Share on other sites More sharing options...
denabob Posted April 4, 2004 Report Share Posted April 4, 2004 I most definitely agree about the "con" that goes on with the need for lawyers but the way I saw it was 25% of something is better than 100% of nothing! My lawyer was terrific and she really earned her 25% I went through two denials before hiring my lawyer but I thought I had enough evidence to do it on my own. I had been forced into medical retirement from the postal service and thought that would carry some weight, after all it wasn't my choice to no longer work. Surprise! They dont even completely read the files from the doctors until they are forced to.It is a LONG DRAWN OUT PROCESS but well worth the fight.Good Luck to anyone starting the battle!Deanna Quote Link to comment Share on other sites More sharing options...
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