HIV and Disability
Apr 17, 2008
HI--as a HIV+ man for several years now--I cope with the usual fatigue, digestive problems and sometimes slight fevers. My viral load is undectable thanks to Atripla! I recently lost my job after 27 years and my Dr. put me on state disability-which last one year-I also applied for permanent disability through Social security---its been almost 1 year and I have not heard anything back from Social Security--I have a national law firm to represent me -however they just say you have to be patcient--they even told me S.S. doesnt like their firm and will not respond in a timely manner. My question is == why doesnt S.S. have certian deadlines to conform to? --such as let the person know within 30 days that they have recieved your application, and 6 months to process the application. Apparently I have no recourse but to sit around and wait for years? in the meantime state disability has run out and I have no income--it doestn seem fair--do you have any suggestions? is it true S.S. disability can respond (or not respond) whenever they feel like it? there are no specific deadlines they must adhere to? This puts me under tremendous stress which is not good for any one HIV+ thank you for your help.
Response from Dr. Frascino
You are certainly not alone being stuck in the frustrating quagmire of SSA bureaucracy! The situation is appalling and morally reprehensible. I won't even try to explain all the reasons for the current intolerable mess. (It would just make you even more frustrated and annoyed!) I would suggest you push your "national law firm" to become more aggressive. For instance, have them send copies of their letters showing SSA inaction to your congressmen and senators (state and national). SSA really dislikes that and sometimes becomes more motivated to act if they know lawyers are notifying elected officials of a serious problem. In addition you could get copies of your lawyer's demands and go in person to your local SSA office. Just sit there and demand to be seen by a claims representative. If they are unresponsive, try collapsing in the waiting room or vomiting all over the front desk. (I'm really only kidding about that last suggestion, but I do have a buddy that did this and managed to have his claim resolved within days. However, I'm not endorsing the behavior!) I'd also suggest you begin to contact your local newspapers and local television stations. Sometimes they will pick up a human interest story of gross incompetence resulting in hardship for HIVers.
Good luck. Write back and let us know how your case progresses.
Reply to HIV and Disability (4/17/08) May 8, 2008
Hi! I volunteer 20 hours a week at a clinic that provides free legal services to HIV+ individuals (Im not a lawyer. I have another year of law school, and have obviously not taken the bar yet, so you should not take this as legal advice). A very large part of what we do is SSI/SSDI applications, recons + appeals. SSA can absolutely take as long as they want to make a decision, but theres a lot that your lawyer should be able to do to speed that up a bit (theyre technically things that youre perfectly capable of doing yourself, but the sad and rather disgusting truth is that SSA workers and disability examiners are significantly more willing to be polite, return phone calls, and give useful information when its a lawyer whos on their ass instead of an applicant).
Since you have no income right now, you can get a little bit while you wait by applying for general assistance (GA). Its a pretty paltry sum of money a few hundred bucks a month but if youre desperate, its probably better than nothing. I guess youre in California since youre SDI? Not my jurisdiction, but I believe you qualify for GA in California since youre unable to work due to illness. Google General Assistance plus whatever county youre in, and youll be able to find where you have to go to apply. Your doctor will also have to fill out a one-page form saying that youre unable to work due to your disability so that you wont have to go employment training sessions.
I wouldnt bother going to your local SSA office. Once your application is filed, it gets sent to a disability examiner who is in another building, nowhere near the SSA office and possibly very far away. This is the person who has to be tracked down and it can sometimes be quite difficult to do so! However, it is always possible to find them (it just takes persistence!), and they can be quite accommodating in terms of speeding up the process. Also, our local SSA has security guards theyre apparently used to dealing with frustrated people who are at wits end. If having a vomit-y moment or just creating a bit of drama at the SSA office will alleviate some of your stress, Im all for it! But I doubt that it will make a positive impact on your case.
Im very concerned by the fact that your national law firm is (or claims to be) on bad terms with SSA. Everything regarding SSA is local to some extent, but we are on excellent terms with the management at our local SSA office, as well as many of the caseworkers. And we win the vast majority of cases we bring, at one stage or another. They understand our role, and have no animosity towards us for being aggressive advocates. Hell, it works! As frustrating as SSA can be, we know that maintaining a decent relationship with them is one of the most important things we can do for our clients, and Id be concerned if a disability lawyer didnt realize this. Even if SSA's animosity towards them isn't their fault, it still makes them less-than-ideal advocates. I know some law firms do pro bono work for HIV+ clients, but just by the odds, it seems more likely to me that youve hired one of the national firms that file thousands upon thousands of disability cases every year. These firms usually take a fixed percentage (25%) of your disability back payments (the lump sum youll eventually receive if you win, dating back to the month of your application), up to the maximum allowed by law of $5300 (it would take nearly two years after the application to reach this max for a disabled adult who is not legally blind thats a lot of waiting!). When this is the fee arrangement, they really have no interest in making the process go quicker. Waiting patiently is no extra work for them, and for every month that your case is stuck in bureaucratic sludge, they make a couple hundred more dollars! Its a volume business if they were putting major time into these cases, there is no way theyd be able to do it for a few grand. Theyre not the ones who are struggling to make ends meet and experiencing stress-related deteriorations in their health while SSA takes their sweet fucking time. And all the while, they can blame it on the fact that SSA doesnt like us because we win so much, so theyll take really long to make a decision. Im not accusing your firm of doing this (for all I know, its an excellent firm that actually cares about you and about the rights of disabled HIV+ people in general); Im just not terribly confident in the ethics of many lawyers.
Long delays are often caused by the fact that they dont have your medical records. It can take months for a busy doctors office to respond to a record request, and some doctors wont send them at all (Ive spent quite a few hours crouched over the xerox machine in doctors offices and hospitals because its sometimes the only way to get the records in a timely way, or sometimes at all. Ive also gotten cases on reconsideration where the initial application was denied because SSA waited a few months to get medical records, never received them, then made the decision without them or sent the patient for a consultative exam [which always presents the individuals medical condition in an unfavorable light but then again, what do you expect when the so-called expert on your HIV-related disability is an ophthalmologist?!]. Given the ever-increasing demands on doctors, writing a long, detailed letter to SSA explaining why youre disabled often ends up being placed on a doctors backburner. Theyll sometimes tell a patient that theyll write one, and then when the patient comes to us, and we contact their doctor, often months later, the response is I just havent had time. If your disability lawyer is any good, he should be able to read medical records and lab reports and write a letter summarizing the information in the light most favorable to you so that your doctor can just review it, make any necessary corrections, and sign it. Having lawyers right letters about patients' medical conditions on their doctors' behalf is obviously not ideal, but it's better than not sending one at all or delaying the case until the doctor has time. If your lawyer has a decent amount of experience in handling HIV cases, he should also already have a very good relationship with all of the major providers of HIV care in the area. Personally, I hate bothering doctors, because theyre busy saving lives, and here I am bothering them about paperwork and adding to the list of non-medical annoyances that they have to deal with, but they are always very gracious with us and understand that we are just trying to help their patients. If your lawyer tells you that they are having trouble dealing with your doctor, I would be extremely worried. Ditto if a year into the case, he doesnt have significant background knowledge about HIV in general and your symptoms in particular).
If it has been a year, and your lawyer has no idea where the case is at, the first thing I would do is ask do they have all of the medical records? If your lawyer doesnt know the answer to that question, in my opinion, hes just not on top of the case, and probably doesnt give a fuck. If you want a case to go quickly, the best thing to do is submit your complete medical records (from every hospital youve been at and every doctor youve seen) with the application or request for reconsideration. This can, quite frankly, be a huge pain in the ass, but a good lawyer should do it for you (this is one of those things that you actually could do for yourself without it being to your detriment, but given most applicants poor state of health and general anxiety/frustration over the process, it's probably less stressful to just let your lawyer handle it). If that hasnt been done, the next-best thing you or your lawyer can do is to get the number of the examiner, leave a polite message saying its been a really long time since this application was filed. I just wanted to know if there is any information or any documents that you need. If youre missing any medical records or other documentation, we can provide it pronto. Chances are, theyll actually return the call, be grateful to you for doing some of the legwork for them, and process the case faster as a result. Even if your medical records were submitted with your application, if your case has been in limbo for a year, you have new medical records that should be sent.
I would also ask other questions to make sure that your lawyer is actually working the case. Make sure that he can give you the name and number of the specific individual who is examining the claim. Ask how many times hes tried to call the examiner. If the response is, oh, that doesnt do any good. It actually just pisses them off and makes them go even slower, its either a lie or an indication that he shouldnt be handling your case!
Also, SSA loses a lot of stuff. Its truly like the Bermuda Triangle down there. SSA is what it is its your lawyers job to make sure that your case doesnt slip through SSAs very wide cracks! Why else should they be entitled to 25% of your back-payments?!
I absolutely agree with Dr. Bob about involving your congressman if it turns out that everything with your lawyer is on the up-and-up, SSA has all of your documentation, and its still taking forever.
The situation at SSA is a nightmare. Unfortunately, unless at one point you had an illness that qualifies as a listing (usually an AIDS-defining illness that qualifies, but not always), theyre pretty harsh. Theyre particularly unsympathetic to claims based on fatigue and other symptoms that occur frequently at higher CD4 counts. Persistence is key here! A lot of these claims are rejected without much thought at the early stages, and then won at an administrative hearing. Too many people with bona fide disabilities simply give up without exhausting all of their remedies. I hope that you win your case (and you may win at the early stages! SSA is arbitrary, and that arbitrariness can sometimes work in your favor! They can reject ten claims that look identical to yours, and then, for no apparent reason, youre the lucky winner!). Please take care of yourself, and whatever you do, try not to give up hope. Im sorry that I couldnt tell you anything more potentially useful. I just saw the part about your lawyer and grew a bit concerned.
p.s. Dr. Bob I know you hear this all the time, but I just wanted to thank you for everything you do to make our lives better. Ive sent a couple questions to other forums here over the years, but Ive never actually sent one to yours (its hard to believe, but I just havent lost sleep worrying about giving HIV to my rubber ducky just because we share a bathtub). Im generally pretty happy, but occasionally get really down about my prospects of finding a poz man with whom Im compatible, or a decent neg man who will see me as more than a disease vector and not run away scared. I love reading the bits about your relationship with Dr. Steve its cheesy to say it, but it actually does give me hope. I go on the HIV prevention forum every few weeks just to read all of the silly questions and your hilarious answers to them. Youre right up there with Stephen Colbert on my list of people whom I dont even know who nevertheless, without fail, always manage to brighten my day. Thank you.
Response from Dr. Frascino
Hello Future Esq.,
Thank you for taking the time and effort to address this all-too-common issue. You have provided some very valuable information that I plan to pass on to the many folks caught in the SSA quagmire. Gosh, for such a detailed and erudite dissertation, I feel I should offer you some remuneration. Most of my lawyer friends charge by the word or fraction of a second of their time. So unfortunately I guess I can't afford to pay you in dollars, euros or even Monopoly money. Instead I'll offer you my free and unfettered advice and wise-assed comments whenever you are in need, OK? And just because I'm such a nice guy, I'll start interviewing future husbands for you. OK readers, who wants to marry an extremely smart, very sex, soon-to-be lawyer with dreamy crystal blue eyes, rock-hard six-pack abs and a chiseled chest with pecs so well defined they belong in Merriam-Webster's unabridged dictionary?!? I'll personally interview and test drive all likely candidate-studs and promise you'll have a spunky-hunky to join you and your rubber ducky in your bathtub Jacuzzi (Did I mention Future-Lawyer Guy has a killer bathtub Jacuzzi???) before Memorial Day, OK?
Thanks again. I really do appreciate your effort. I'm also quite confident your Mr. Right is indeed out there!
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