SSDI filing and Neuropsych testing

[Guest guest]

This is a post that I did several years ago, and it's as important today as it was

then.

As for SSDI, the first thing you do is file for yourState Disability. Generally this lasts for the first12 months. Six months into that time frame (now) youneed to start the process for SSDI.Get ahold of Social Security and request the forms.They will send you a packet of what you need to fillout. It will also include a release for medicalrecords.It is so very important that when you explain why youcan't work-- that you explain in detail what happenswhen you try to walk, when you try to sit for anylength of time, the effects that the NS has on yourcognitive skills.If you have short-term memory loss- explain it. Ifyou have numbness in your extremities, explain it.Detail what you can no longer do-- don't go into whatyou can do.If you need help in any Activities of DailyLiving--ie. showering, cooking, cleaning, shopping,keeping house, paying bills, explain what you've

lost.If you suffer from depression secondary to yourinjuries, explain it.You'll need a couple of letters from friends andco-workers that can tell SSDI what you did and whatyou cna no longer do.For instance, one of the women I used to work with,and had trained for her job, wrote that I was anextremely compentent manager, multi-tasker, problemsolver-- and that the NS had made it so that talkingwith me was like talking with a patient in the firststages of Alzheimers. One minute I was totally clear,the next- I had no idea what I'd just been told, orwhat I'd explained- so I'd start over-- and over andover.Another explained that watching me work was heartbreaking, in as much as I'd start a project, but ittook a trip to get the paper, then a trip to get theinkpens, then another trip to get something else-- andthen by the time I had all I needed together, Icouldn't remember what i

was going to do-- and I'd bedestracted by a phone call- and not get back to theoriginal task for hours.This was all confirmed by the Neuropsych testing--which I flunked horribly.I had also become inappropriate with what I wouldsay-- and I had no idea what I had said-- not good ina world of harrassment lawsuits.As for the time frame-- one thing SSDI does is look atwhat you would have gotten paid if you were on SSDI--and if your State Disability is less, they will makeup the difference. So getting started early - at the6th month, is important. It can take 6 months to 2yrs to get approved. However, you will be paidretroactively to the time you first filed. DO NOT MISSANY APPEALS DATE-- OR YOU START OVER- AND THAT LATERDATE WOULD BECOME YOUR START DATE FOR RETRO-ACTIVEPAY.At the 1 yr anniversary of your disabilty, if you'vebeen approved for SSDI, you would start

gettingmonthly payments at that time.At the 2 yr anniversary of your disability, if you'vebeen approved for SSDI, you will be enrolled inMedicare Part A and Part B and D. You don't pay amonthly premium for Part A--Hospitalization, but youdo pay a monthly premium for Part B and D-- Medicaland drugs.It is imperative that you take the insurance whenoffered- and make a choice for your drug coverage.Otherwise, you don't get a guaranteed enrollment untilyou turn 65. If you have a Long-term disabiltyprogram through your employer-- sometimes that willgive you secondary coverage or prescription drugcoverage--so you'll want to educate yourself on thedifferent choices.Some people will tell you to get an attorney right offthe bat. I don't feel it's necessary-- if yourmedical records state that you are disabled and spellit out as to what you cna't do. So make sure youaren't

holding back anything from your docs. ANYproblems you are encountering-- whether it's yourpersonal relationship that have taken hits, sexualdifficulties, work relationships or any ADL (activityof daily living) tell the docs. Get it in yourcharts.Another thing that helped me was that my docsexplained that multisystem sarcoidosis was like havingMS, Rheumatoid Arthritis, Peripheral Neuropathy,Dementia and Chronic Fatigue all wrapped into one.That gave SSDI an idea of how to guage the manner ofdisabilty. No-- I don't have all of those (4/5 butwho's counting) but they have criteria for thosediseases. NS is new to them- and so many have the old1953 Merck Manual that says this will burn itself outin 2 yrs, and you'll never know you had it. (Boydon't we wish).One other thing-- in our ARCHIVES and LINKS-- we havea huge number of articles that explain varioussarcoidosis issues--

print out the ones that you feelwill help your case- and send them in with yourrecords.The address for the A & L's are at the bottom of thisand every email that comes from the group.Sincerely,TracieNS Co-owner/moderator

[Guest guest]

Thanks! I needed to know this because this is exactly what has happened to me. I

was on disability before but felt that I was able to do. At the time my

neurosurgeon warned me that I might worsen but I did not see it coming until

very recently.

>

> This is a post that I did several years ago, and it's as important today as it

was then. 

>

>

>

> As for SSDI, the first thing you do is file for your

> State Disability. Generally this lasts for the first

> 12 months. Six months into that time frame (now) you

> need to start the process for SSDI.

> Get ahold of Social Security and request the forms.

> They will send you a packet of what you need to fill

> out. It will also include a release for medical

> records.

>

> It is so very important that when you explain why you

> can't work-- that you explain in detail what happens

> when you try to walk, when you try to sit for any

> length of time, the effects that the NS has on your

> cognitive skills.

> If you have short-term memory loss- explain it. If

> you have numbness in your extremities, explain it.

> Detail what you can no longer do-- don't go into what

> you can do.

> If you need help in any Activities of Daily

> Living--ie. showering, cooking, cleaning, shopping,

> keeping house, paying bills, explain what you've lost.

> If you suffer from depression secondary to your

> injuries, explain it.

> You'll need a couple of letters from friends and

> co-workers that can tell SSDI what you did and what

> you cna no longer do.

> For instance, one of the women I used to work with,

> and had trained for her job, wrote that I was an

> extremely compentent manager, multi-tasker, problem

> solver-- and that the NS had made it so that talking

> with me was like talking with a patient in the first

> stages of Alzheimers. One minute I was totally clear,

> the next- I had no idea what I'd just been told, or

> what I'd explained- so I'd start over-- and over and

> over.

> Another explained that watching me work was heart

> breaking, in as much as I'd start a project, but it

> took a trip to get the paper, then a trip to get the

> inkpens, then another trip to get something else-- and

> then by the time I had all I needed together, I

> couldn't remember what i was going to do-- and I'd be

> destracted by a phone call- and not get back to the

> original task for hours.

> This was all confirmed by the Neuropsych testing--

> which I flunked horribly.

> I had also become inappropriate with what I would

> say-- and I had no idea what I had said-- not good in

> a world of harrassment lawsuits.

>

> As for the time frame-- one thing SSDI does is look at

> what you would have gotten paid if you were on SSDI--

> and if your State Disability is less, they will make

> up the difference. So getting started early - at the

> 6th month, is important. It can take 6 months to 2

> yrs to get approved. However, you will be paid

> retroactively to the time you first filed. DO NOT MISS

> ANY APPEALS DATE-- OR YOU START OVER- AND THAT LATER

> DATE WOULD BECOME YOUR START DATE FOR RETRO-ACTIVE

> PAY.

>

> At the 1 yr anniversary of your disabilty, if you've

> been approved for SSDI, you would start getting

> monthly payments at that time.

> At the 2 yr anniversary of your disability, if you've

> been approved for SSDI, you will be enrolled in

> Medicare Part A and Part B and D. You don't pay a

> monthly premium for Part A--Hospitalization, but you

> do pay a monthly premium for Part B and D-- Medical

> and drugs.

>

> It is imperative that you take the insurance when

> offered- and make a choice for your drug coverage.

> Otherwise, you don't get a guaranteed enrollment until

> you turn 65. If you have a Long-term disabilty

> program through your employer-- sometimes that will

> give you secondary coverage or prescription drug

> coverage--so you'll want to educate yourself on the

> different choices.

>

> Some people will tell you to get an attorney right off

> the bat. I don't feel it's necessary-- if your

> medical records state that you are disabled and spell

> it out as to what you cna't do. So make sure you

> aren't holding back anything from your docs. ANY

> problems you are encountering-- whether it's your

> personal relationship that have taken hits, sexual

> difficulties, work relationships or any ADL (activity

> of daily living) tell the docs. Get it in your

> charts.

>

> Another thing that helped me was that my docs

> explained that multisystem sarcoidosis was like having

> MS, Rheumatoid Arthritis, Peripheral Neuropathy,

> Dementia and Chronic Fatigue all wrapped into one.

> That gave SSDI an idea of how to guage the manner of

> disabilty. No-- I don't have all of those (4/5 but

> who's counting) but they have criteria for those

> diseases. NS is new to them- and so many have the old

> 1953 Merck Manual that says this will burn itself out

> in 2 yrs, and you'll never know you had it. (Boy

> don't we wish).

>

> One other thing-- in our ARCHIVES and LINKS-- we have

> a huge number of articles that explain various

> sarcoidosis issues-- print out the ones that you feel

> will help your case- and send them in with your

> records.

>

> The address for the A & L's are at the bottom of this

> and every email that comes from the group.

>

> Sincerely,

> Tracie

> NS Co-owner/moderator

>