i hope you have a fresh cup of coffee (a slightly stale one will do) because each of these depressing, frustrating, hopeless, unfair, infuriating, and jacked up situations warrants their own posting. happy reading blog-a-maniacs!
Social Security vs. a "mentally challenged" woman with "un-severe enough MS"
i filed for social security disability in march. i had been urged to apply by my former psychiatrist, internist, and neurologist in d.c., but it took a bit longer to be completely convinced. i associated disability with an MS-death sentence. my mind cycled slideshows of those big ugly burgundy handicapped vans, rickety wheelchairs, elastic pants, 
flowered canes, and chunky orthopedic mules. and to be honestly i thought it would mean i had reached the end of my rope in trying to recover from this wicked flare. i would mean giving up.but i quickly came to realize that giving up had nothing to do with getting the resources i deserved to keep fighting. so after i was denied coverage from the disability insurance i held at arnold, and watched my medication co-pays, physician visits and monthly cobra payments drain the dismal amount of money in both checking and savings, i began to reconsider. i mean hell, i already use a cane and am pushed around in wheelchairs (some drivers being better than others.) and besides, this is what our tax dollars, paycheck deductions and government programs are there to do- help people that need it. so let the mountains of paperwork begin!
i'll break it down for you (in a VERY abbreviated format.) you start by choosing to schedule an appointment in person at your county's SSA office, or on the telephone with an SSA representative (which i chose due to my mobility and fatigue issues- i assumed they didn't have a cot in the back i could go lay down on halfway through our interview.) you give repetitive, intimate information about your complete health history to a total stranger who will have no influence at all over the Administration's final decision. you provide a list of every doctor who might had seen you for any reason for the last year leading up to your disability, and sign a waiver for each of these offices to release your files to the Administration. (you are then charged $0.15-0.75 per page for your someone at your doctors' offices to press "copy", collate and lick the envelope to mail these files- with no sense of urgency whatsoever.) the representative tells you it will be at 3-4 months before you have your final decision, but i'd suggest you double that figure.
the Administration then contacts you approximately 3 months later saying that they do not have enough "information" on your condition, and could you please answer fill out a questionnaire and a function report that totals 20 pages? (what this really means is that your medical files are way too large for them to go through, so would you please do the work for them?) these documents ask highly technical and obviously influential questions such as "Do you take medication?", "Describe your daily activities.", "How much weight can you lift?", and "How far can you walk?". throughout the process, the Administration will frequently send you letters (never picking up the telephone- the horror!) to say that Dr. X has not responded to their "frequent" attempts to contact him/her, and could you please intervene on their behalf? (i don't know about you guys, but getting a doctor on the phone is next to impossible. i would think the "Social Security Administration" has way more pull than the patient!!)
after the "3 or 4" month deadline has passed, you contact your Adjuciator (has anyone else ever heard of this term?) or the state appointed "legal representative" that the SSA so willingly provided you to make sure there is always someone "looking out for your best interests." btw, i don't think either one of these people have ever picked up a phone in their life. so plan on spending about 2 or 3 weeks calling their office(s) on a daily basis- sometimes twice a day- just to see which one you can contact first. the "3 or 4" months quickly passed into "5 or 6" months and i began to get panicky (this escalated each time i received my monthly bank statement. or lack thereof.) i did get in touch with the "Adjuciator"who told me she doesn't have time to return phone calls, so i should just keep calling until she picks up. (wow. can you imagine saying that to a client? only in our federal government system.) she then told me that the system is overloaded, and they are very backed up, so it would be at least another 2 months before a decision was made in my case.
by this point, i was beyond stressed out. cobra was running us $530/mo- a fee that Mom and Dad have had to take on since my bling was blaaaaaahhhh. even though i have state supported medicare, it doesn't cover Tysabri, so we were keeping BCBS to cover that one infusion. ($530 is better than $1700 for Aloxi + $2,000 for the Tysabri) but my friend stacie had had it with my SSA nightmare. she was so infuriated on my behalf, that she strapped on her MS Ninja Girl uniform, grabbed her nunchucks and decided to take on the state of pennsylvania. thanks to her, a constituent advocate from senator robert casey jr.'s office called me before i could finish her entire email. (elle had always told me that much of a congressional or senator office's role is intervening on behalf of its constituents, i.e. passports. but of course that information was not retained nor linked at the time of my SSA run-ins.)
kevin (constituent advocator) explained that they have to tread very carefully, making sure they are not seen as putting "pressure" on the SSA, and what they have the most success is in expediting hearings once the claim goes into an appeal. after i explained my situation (when i had applied, what i had found out on my phone calls, that i knew i would be rejected, but need to get the appeal process started which i can't do right now), he said he would work on seeing what he could do to expedite the original decision. i was then emailed a waiver, with my signature allowing his office to have access to my medical files and contact the SSA on my behalf. this was the week of the 10th, and it was on saturday (the 22nd) that i received a large, bulky envelope from the Administration. i know it was because of kevin's involvement under the office of senator casey, jr. like we all know, it's good to have connections, especially political ones.
despite my rational expectations, the fact that it wasn't a super thin no. 10 envelope mislead me- briefly. (remember applying for college? you never wanted to see those small envelopes.) i thought maybe, just maybe, something had gone my way. i mean, medical records can't lie! doctor's orders can't be misread! but that hope evaporated as soon as i opened the tab. my claim had been denied because i did not qualify as disabled under "their rules." (these "rules" can be found online in the SSA's "Disability Blue Book"- MS falls under 11.09) among other things, my MS isn't "severe enough" and i am too young to be disabled (these are almost exact quotes- the letter is downstairs.) my favorite line was that i should instead look for work that is "less mentally challenging".
like i said above, we were expecting this to happen. but when the rejection came, it hit me harder than i expected. i was insulted, my feelings were hurt,- i was enraged that in this day and age, when so much is known about MS (and it is a real and documented disease), that a government agency has the ability to tell me how severe my MS is. do they honestly think i PREFER living at home, losing my career, having limited mobility, waging a daily battle with my inability to process information and have a normal conversation? or do they not even see me as a person at all? i'm thinking the latter. not to mention that my age is apparently an issue. and ALL of my recent doctors, from my psychiatrist in va and my internist and neurologist @ georgetown, to my current my internist, nurse practitioner and neurologist at geisinger, gastroenterologist at evan, and my physical therapist here in pa, have documented in my files that i should not be working, as returning even part time would compromise my fragile health condition.
i had been introduced (electronically, that is) to a lawyer out of philly who had handled a recent disability case for one of the women at the MS support group mom attends here in town. i contacted karen (the lawyer) a month ago, wanting to know how i would go about filing for an appeal and what her assistance would be in the matter. right off the bat, she was extremely supportive and positive about the outcome of my case. she has lots of experience with ms patients and disability claims, and she verified my suspicions that my age is being used against me. i am classified as "younger" (anyone under the age of 49) by the Administration and automatically denied at the first level. the assumption is that there must be some work that i can do. by rejecting me, they assume i will be daunted by the decision and the work and time involved in an appeal, and will just go away. but she has every expectation that we will receive a positive outcome when we get in front of a judge.
when i received the rejection on saturday, i immediately emailed her to ask if she could take my case, and i recieved her acceptance on monday. luckily, she only charges her fee if we are successful in our appeal claim (she mentioned this is mandated by the Administration also)- she collects 25% of the back due benefit up to $5,300. (so, if i get a back due benefit of $8,000, she gets $2,000; if i get a back due benefit of $30,000, she is capped at $5,300.) from my research, the benefits vary from person to person based on how much you have put into the system. and as far as timing is concerned, that's a bit ambiguous (shocking.) the appeal must be filed within 60 days from receiving the denial, and after that, the Administration and the lawyer have to request all of my medical records (i think there is an entire forest in n. dakota that is treeless due to my medical paperwork) to review, and the hearing will be scheduled anywhere from 6 months to 1 year. (i'm trying not to cringe at the timeframe.)
so kids, i'm callin' it a night- am going to power down this little hottie (the laptop, not me) and try to sleep with my heart racing and face pounding. (ahhh i've missed you IV steroids!) i hope you have enjoyed your lesson on the inner workings of our nation's social security administration. thanks for staying with me 'til the end- both literally and figuratively. and as always, i'm open to your illustrious wisdom and advice.
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