Americans with Disabilities Act
 

Hello everybody! I've been MIA for a long time from here I know.

I wanted to share this website with those who are still trying to keep working with MS or even other disabilities.

https://www.ada.gov/2010_regs.htm

My MS has gotten to the point of me being either fired from work or needing to go on disability soon so I shared with everyone at work about the MS and my symptoms.

I had previously been allowed to sit while I work for 4 hours a day but our HR department had lost that information. I got a new note from my doctor saying that I cannot stand while I work, period, due to MS.

So that helps me to keep working if I can keep my sales up enough to stay. I know it might only be a temporary reprieve because I have issues with pain, weak hands, cognitive issues (word recall, forgetting names, handwriting difficulty, bathroom issues, etc...)

I didn't realize the protection provided under the ADA act though. So they really won't want to fire me if I am doing my job in a reasonable manner. :)

I need to work four more years if I can handle it so I can get early social security at age 62 1/2. I could easily get disability but I'm stubbornly avoiding that for as long as I can because I'm afraid if I do so many things would happen:

I might go stir crazy
I might kill DH or vice-versa :wink:
My cognitive decline might accelerate
I might run out of money in my retirement because other than the MS I am fairly healthy (that is the biggest one)

Hi Wiz!!!

I am so glad you posted this link as it is helpful to those who are still working and are able to work outside of the home but need some sort of accommodations to continue to do so.

You are in a tough position but I am amazed and in awe of you. I only work on a very part-time basis and some days even that can exhaust me. As you know, I work from home in a sit down type job transcribing. I cannot imagine working outside of the home and in sales where I need to be on my feet all day. You're awesome!

I hope that you are able to continue in your position for the next 4 years. Killing your honey will only get you more than 4 years in a not so friendly environment. :D:D

I miss seeing your posts!!!!:( But, I know it is hard with working to post often. :hug::hug:

hi wiz, good to hear you're back. :)

if it helps anyone else let me tell you the poor decision i made when i was still working. i was an RN and had worked at my hospital for 18 yrs. i was not in a good way when my MS was dx'd. i was 58 y/o.

i was working FT and had been paying for LTD benefits. i hoped that if i went to PT i could prolong my work life into my 60's. HR told me if i went PT i would loose my LTD benefit. but, i decided to do it. well, only 2 mos later i had to resign. i just couldn't do it. and, so away went my LTD.

i had to pay COBRA for 18 mos til my SSDI was approved. a bad move. think long term when you're still working. hope this experience helps someone.

I remember that Nursenancy. I'm paying for LTD, and luckily my company doesn't have part time employees so if I get to that point I'll just go out on STD and then revert to LTD. We have MetLife for that and I've heard it's very hard to work with them for your benefits. So hopefully if I need them I won't have a tough time.

There are some jobs in my company that are home based but very few and I doubt they would promote me to one of those anyway.

I've found that my productivity has increased greatly now that I have a chair. The main problem is keeping others from sitting in the chair when I get up to do something and then come back to see it's taken.

since you might be closer than further from applying for ssdi let me tell you another of my experiences.

someone at my neuro's office told me to approach the application for ssdi like a thesis. he said to be detailed and to not approach the questions like you were having your best day, but your worst.

when i had it filled out and my drs said they mailed in their info about me i waited......only to get a denial letter (common, right?) which amoung other things said they were missing info from my pcp. i called their office and they said they sent it in. ????? too late, i'd already been denied. so had to pay thru the nose for COBRA for 18 mos. then i hired an attorney and applied again. i was approved. a very expensive and stressful wait.

that's why i always suggest that we get copies of reports, tests, dr notes etc.
i would have done that had i been smarter. then i make a copy of the copies and mail it to them return receipt requested.

also, when i told my neuro that i couldn't work anymore he ordered some other tests, functional capacity studies, to document my weaknesses. so get your drs to document, document, document.

and, ps....if you're taking any meds or even OTC meds get your dr to write an Rx and put it in your medical file. you can write these of on your taxes.

sorry this is so long. i wish someone had told me these things when i was first dx'd.

NurseNancy - Thanks for sharing your experience and tips! :hug:

I followed Nurse Nancy's advice and kept a 3 inch binder with separated sections for my different doctors. I had first applied for SSDI in 8/2013 with no documentation. Of course, I was denied. I did not appeal for reconsideration. My son was able to carry me on health insurance beginning 1/1/2014. My document trail begins again. I reapplied 7/31/2014. I was denied again, and I made an appointment with a local attorney. She filed the reconsideration. I was denied again and we appealed for an ALJ hearing in person. In March, we were notified that my hearing date was set for 8/12/2016. My attorney's paralegal called me on 7/21/2016 to tell me that she had received a call from the ODAR office and that the ALJ had ruled OTR in my case. I have received the letter and it is a fully favorable decision. My neuro only diagnosed my MS on 4/26/2016. We made sure that everything was added to my record.

good for you! i'm glad you didn't give up.
in the medical field it's document, document, document.

i worked many yrs in NICU's. i always kept good written notes. and, left out the emotional but always tried to chart the objective, not the subjective.
one day i was told that it was my good charting that kept a family from suing us. we made no mistakes.

that's what the court looks for too. notes from md's etc.
and an extra added bonus is that you may learn interesting things from reading your dr's notes. i've found many with inaccurate charting. some were so wrong that i called the office & had them changed. like; one dr said i had coronary artery disease and i don't. didn't want that in my records. i made him change it.

your description of a notebook is a great idea to keep organized.

Wow!!! You got your SSDI quickly. I know for some people it is years. I am sure all the documentation helped, as NurseNancy suggested. I don't remember how long it took me to get mine. It was less than a year. I was denied the 1st time and appealed using a lawyer and was approved right away after that. They lawyer didn't even do much.

They're reluctantly forcing me out at work. They like me because of my ability to handle customer service situations and my expertise with our systems in helping new employees fix problems, but they are forced to coach me on my lack of sales of new products.

I requested a copy of our company long term disability policy but I don't know if they will provide it to me. I called Met Life asking for it and they said I needed to get it from HR. My manager requested it for me yesterday via email.

I will actually get more from SSDI now than waiting until I'm 62. There is no way I could wait until then. If my own company doesn't want me, no other one would at my age and with my health issues.

Once I get the policy I'm going to have it translated with a disability attorney. With my tenure at work I should get 4-6 months of 100% pay on STD, then it reverts to LTD. I really need to know if they cover pre-existing conditions. It's interesting that we are not able to download the policy from the company website.

We are seriously short handed at work. They want me, but they don't. It's such a strange situation. They terminated hundreds of people a week ago when they cut out customer service positions in the retail stores nationwide. I almost feel fortunate that I have a way out now. I feel sorry for those others that have lost their jobs or that must apply in different parts of the company.

i'm sorry wiz.

when i left my job i was so sad. i grieved for the loss of my job, part of myself & my future.

if that happens to you try to be gentle with yourself. you have provided a great service in the workplace for most of your life. be proud of that.

PM me if you need to talk.
judy

:hug: Wiz :hug:

I didn't want to leave my job either. And they didn't want me to go but we both knew it was time.

It takes a while to get used to the fact that you're not working anymore. It was strange....I felt almost guilty. :o But having the LTD was a Godsend and still is.

I was awarded SSDI almost immediately. I applied online.....by myself with no help.....and a few weeks later got my award letter in the mail! I was shocked and while I know that isn't the case for some folks it was most appreciated by me.

I hope things go smoothly for you. You've hung in there a lot longer than most.

Well I found out today that pre-existing conditions are covered but they still would not give me a copy of the policy.

So I'll have to go through the STD part and then LTD until I get SSDI. I have tomorrow off work so I might apply for the STD then to get it started. I was warned again today during my shift by one of the managers regarding a sale. It's so disheartening in some ways. On my good days I feel like I could work forever, then on the next day I'm dragging again. It's time. I might actually feel better without the stress of my job.

Thanks for your support ladies! :hug::hug:

:confused:I applied today for STD. The odd thing is that I don't call off work. I just go in and push through each day. One of the people on the phone was very condescending. That tells me that this will not be an easy process. Because even though I have paid for this coverage for nearly seven years, there is still the presumption that I am a dishonest person trying to work the system.

I'm so sorry you got a "bad apple" the first time you applied for the benefit you paid for but never wanted to use.

These type of people are everywhere but they certainly don't need to be in a job assisting people with these type of benefits.

It's so hard to try and explain to folks who've never experienced MS or really any disease what it's like and why we can't work "normal" hours....or any hours. What's "normal" anyway?? And why do we need to explain ourselves to people who already have a slanted opinion of our situation? There really needs to be some sensitivity training for these people who are in these types of positions.

I really do hope you get better help with your claim in the future. Is there anyone in HR that could possibly help you with this?

That's a good point Kitty. I have my HR contact info so I might need to call her. I have my paperwork going so we'll see what happens next.

Is there no other position there you could do that does not require all that you do in sales. They know your capabilities, s you say you have tenure.

I do know that when I recieved my SSD, I had been on STD. The SSD was awarded back to my last day I actually worked so that when I got the big back payment check, I was then asked at tax time to give part of it back since I was receiving SSD and STD. We were able to work a deal that I didn't have to give them back as much as they originally asked.

I am so glad I never had to go through all of this. I had an exacerbation that forced mme off work and I never worked again. Because I doubted my ability to return to nursing, I didn't renew my nursing license that winter which did make it permanent. But I never had to either be asked to quit or make the decision myself.

Hi Doydie,

There are no customer service positions available because the company is doing away with many of them. And to get a management position I would have to have good sales to get into that, and those positions are more stressful and also involve a lot of standing.

I got a good person with MetLife on Friday and got his direct number. I received some paperwork today from them stating if I'm not eligible for STD then I might be able to take a leave of absence and go on LTD while waiting for SSDI.

It sure does get complicated. I should find out of the STD is ok'd next week sometime.

Hi Wiz,

I'm sorry to hear you have to give up your job. That must be sooooo hard. I'm glad to know you have LTD. Good luck with the SSDI process. I remember when you were one of the early Tysabri people in this forum - always appreciated seeing you around. I don't come here so much anymore.

Thinking of you and sending positive energy. Wishing you the best!

:hug:

N

Thanks Natalie,

I'm currently taking Aubagio and several other meds to keep me going. The things that keep me from working are pain, bathroom issues, hand weakness and some cognitive issues. If not for those I could at least be good at sales while sitting at work.

Today I got a phone call from my doctor's office saying they faxed in the paperwork to MetLife. I can go over and pick it up to see what they said. I feel like I'm in limbo again.

My symptoms are complicated by arthritis, high blood pressure and cholesterol, low thyroid and B12. I also take a med called Evista because of an atypical result from a breast biopsy done September 2013. I have to take that until 2018 as a cancer preventative med. So with all of these expensive meds I take my insurance will be pretty expensive until I can get medicare to go along with SSDI.

I'm considering medical marijuana for the pain. I get so much pain from spasticity that I keep shopping for new chairs. :rolleyes: Baclofen and tylenol for arthritis is what I use to manage it now.

So my doctor faxed in incomplete information. MetLife has tried to fax them a form for more information but the fax machine at the doctor's office is not working correctly. So I might not get the disability approved at all because of errors by my doctor's office. I switched to this neurologist because they are nice and close by. I am so discouraged.

I'm so sorry!! Seems like when it rains it pours.

It's so difficult to make others see the urgency in things that are important to us. :Doh:

Do you have a fax machine at home? Or maybe a office supply store that has one (or a UPS store) that maybe they could fax it to you and you could take it to the doctor's office yourself? I know, it seems like a ridiculous thing to have to do, but maybe it will speed things up.

Hoping that they get their ducks in a row soon.

Well the STD claim was denied, and I appealed but it was denied again. I should have hired a lawyer but I was exhausted and depressed about the whole thing. I never went back to work and I was ultimately forced to resign on January 31st otherwise they would call it job abandonment.

I signed up for Cobra insurance which is cheaper than going on my husband's retiree plan.

I applied for SSDI in December but didn't submit it online until February. Every time I checked the status it said "processing". I called early last week and the person I spoke to looked into it and said it had been approved (!) so she did some things in the computer and said I should get a letter in 7-10 business days. I'm cautiously optimistic that she is right and it has been approved. But I won't believe it until I get the letter.

I can tell you one thing for sure, I will never purchase or support any product by MetLife. I still might see if I have any means for filing a claim against them with the state insurance board. Even if it just puts some pressure on them for being so heartless in handling my claim. I spoke to someone in HR before I stopped working and she said that MetLife does this sort of thing all of the time.

Wiz, I'm so sorry you can no longer work. I know how much you enjoyed your job and you were good at it.

I'm glad you got approved for SSDI! That news must have come as such a relief to you. Many have to wait so long to get it. I got it on the 2nd try, which is typical. I hope that by having the SSDI, you can relax some and take care of you.:hug:

I really miss my co-workers, we had so much fun together. Once when I stopped in to see them they were asking me to help them with problems with sales they were working on. They really valued my presence even though I was much older than most of them.

I'm trying to find other means for socializing now since I miss that from work.

Wish I could help with socializing, but I've never been good at it, and it only got worse when I moved to GA and then with MS I basically live as a shut in. Maybe there's a community center near you? Or something that allows for freedom in hours as a volenteer... our library used and might still have a group they called friends of the library, they held fundraisers to help out the library for expansions and adding computers and such. Meetings were only an hour long once a month or so, and the fundraisers were only I think 2 or 3 times a year... selling off old books, bake sale and some fair like event. And it was all done on a "help as you can" basis.

If you have friends from work that you're close with maybe see about a book club or something, crafting circles... I dunno... kind of terrible at things like that. Depending on your and the age groups of your friends you could even try hosting D&D games or bridge... my experience so far is giving folks a good reason to eat drink and be merry tends to have people coming over to visit. If you brew it they will come :D. And some people also still enjoy good old fashion "tea", light meal and some interesting tea selections, a deck of cards and either having plenty of gossip or inviting the best gossipmonger you know can be a fun way to wile away a Friday afternoon.

And there's generally always the fall back to national social clubs like the Lions Club, Red Hats Society, Kiwanis, Masons... etc. Most churches tend to have some social groups, and even offer Sunday schools where they're always looking for volunteers. It won't be quite the same as the 8 hour days 5 days a week, and health might keep you from being one of the most active members, but still gives a good reason if you're part of a group to struggle that extra little bit to make it to a short meeting on a bad day.

About all I can think of, and mostly stolen from what my parents do to stay socialized (except D&D that's more the 40's something scene ;) retro games and booze!) I more prefer my interpersonal relationships to be internet based :p, and yet I don't even use Facebook go figure :rolleyes:.

I did join a book club Starz. It's at my local small library. They choose a book (usually a women's title or romance) once a month then meet the last Friday of the month. I can get really exhausted easily though so I take a nap in the afternoon before the meeting.

I love the women in the group, they're funny and gossip more than they discuss the book. And booze. They bring booze and snacks to the meeting. It's just hilarious. :D

I don't even care for stories like this normally but I'm reading them to be in the group. I like historical fiction or books about other parts of the world so I can learn about other cultures.

Wiz, that's hilarious! Sounds like my kinda book club!!

I can almost see a book coming out of this book club experience. It would be a hoot! Woman enjoying her life in the work force gets diagnosed with an auto-immune disease and has to stop working. She doesn't want to become a hermit so she looks for socialization outlets. Finds this book club and it all seems innocent enough until she goes to a couple of the meetings and finds out that this is just a glorified cocktail party!! The women there come from all sorts of backgrounds an social levels. Some get into mischief after the meetings (due to the booze they consumed while discussing the book) and the others rescue them.

I think it would be a best seller!! ;)

I still hadn't received a letter from social security so I called them again on Friday. Apparently the person I spoke to must have been lying to me. They show that my application is still pending, needing further information.

Why would a person do something like that? Did it just look too complicated to her to investigate so she was just trying to get me off the phone? I don't get it.

They sent me to an extension of a person in charge of my case so I left her a voicemail message. I won't hold my breath that she will get back to me.

I'm so confused by everything right now. :confused:

I'm so sorry you're having to apply for SSDI.

Many mistakes are made in these vast systems. The person who told you your claim had been approved may have been looking at a computer screen that said you had been approved, and later on it changed and said it was pending. Someone somewhere decided that more information was needed, maybe.

I'm just guessing but it's based on the problems I've seen people having dealing with computers and with lots of information coming at them. I don't think anyone intentionally lied in this case. Social Security is an overloaded system, and it's amazing to me that they do as well as they do.

I hope they told you WHAT information they still need. You might be able to expedite the process if you know that.

If you have a neuro who can write a supportive letter, that might help, but that's probably already been done. Any other doctors who might chime in with more supportive letters--ophthalmologist, ENT doctor, primary care doctor, etc.?

Have you received word yet on your application status? I am hoping that you finally got the approval for SSDI.

No approval yet. It has been a huge mess all along. The last time I called the SS help line, the person I spoke to said my application was just sitting there and couldn't get processed. She said, quite apologetically, that she thinks I will have to start my application over again.

So, feeling defeated by the whole process, I called a disability attorney. They were able to confirm what she said. They logged into the system while on the phone with me and could not see my application pending either.

Luckily, I had the printed form after submitting it with the application number. So they said they would take my case but I would have to pay them up to 25% of my settlement if I get approved. They sent me the paperwork and I sent them the printed copy. They said they would try to get that one to go through, effective December 2016, but if they can't they will have to start over with a new application.

If they can get the original to go through it will mean more money for them and the back pay for me so I'm crossing my fingers that they might be able to fix it. I'm not going to hold my breath though with all that has happened along the way so far. :eek:

I truly wish I could afford to just wait until I was 67 to get my full SS amount but I really need the medicare coverage. I'm paying for cobra through my former employer and even that is expensive. After that runs out I'll go on my husband's pension insurance plan and that is close to $800 per month just to add me on.

I'm just so tempted to just drop the insurance and wait it out but then I would have some sort of health catastrophe for sure and we would end up homeless.

The thing is also, I don't appear to be that sick like so many with MS. But I only have maybe two good hours a day. And I always try to put up a good front. In the neighborhood we tell people that I'm retired. I don't like to explain the MS, it's too stressful to me when people look at me like I'm just being lazy. I've never been a lazy person in my life, I've worked since I was 12 years old except for the years of being a hard working stay at home mom with our boys.

The good thing is I've really focused on budgeting. I've cut expenses drastically. My brain is still fairly good at handling money though I've made some mistakes even with that.

I feel like I should write an essay about all of this when it's over. "How not to apply for disability in 12 easy steps". :D

Another update today. I spoke to the attorney on 8/21 after being told that I would have to reapply for benefits. I logged in to the SS website today and there was a change to the application as of 8/31. :eek: It is "Disability Determination Pending".

I wonder if by verbally getting the law firm started, they called and got the ball rolling even before I had sent them the paperwork?

And I'm not usually easily confused or confuddled but this whole mess has had me doubt my sanity.

At least if it is pending, and they initially deny it, the attorney can help with the appeal.

Now I can see how some people die before getting benefits.

I got a call from someone at the state asking me some questions. She wanted to confirm where my primary doctor was. She said they hadn't received the info from my last visit.

The clinic has recently been taken over by Northwestern (a large Chicago medical group) and so the old records are not readily available. She said if they didn't get the info they need, they will send me to another doctor, but they want to avoid that if possible because they would have to pay for it.

I have a December appt with the neuro, and she said she was hoping to get this finished before then if possible. I wonder if the attorney is responsible for them wanting to get this completed?

I went on a couple of trips recently, one to California with DH to see his rich cousin, and just got back from Mexico where my dear sweet niece got married. I was reminded of my limitations in both places. I think I need a t- shirt that says "I'm not lazy, I have MS." Someone in Mexico asked if I was anti-social because I wanted to sit in the shade away from the group. At least when I go with DH alone on a trip I can rest a lot.

Others just don't get it, do they? They can have MS described to them up and down and sideways and they still don't get what it's like to give out after a short time and find yourself coping with poor vision, loss of bladder control, shaky hands you can no longer feel, and inability to walk, just to name a few of the problems that come on with fatigue.

And it isn't what most people mean when they talk about fatigue.

It's a shame when people in charge of making decisions about benefits lack any understanding of MS but unfortunately it sounds as if there are quite a few of them around, still.

The lawyer you have on a contingency basis is good, IMO. I had a lawyer on those terms years ago when I had to appeal my SSDI termination. It was pointed out to me that a lawyer wouldn't take a case on a contingency basis unless there was a good chance of winning in that lawyer's opinion. After all, if you lose, the lawyer gets nothing.

It took 5 years but I did win the case. Your case shouldn't take that long. This was back in a time when there was quite a commotion about disability cutoffs, which had been happening at an alarming rate because the government was in a mood to "trim the rolls."

It can be a long uphill battle but all indications are that the situation is better now.

They "lost" my file, found it, think they put a big B**** on it, got through on 2nd try. I wrote a description of my day, was too positive so using their own language(You can find their Blue book online using their description of MS. Had a kind person, sure a recent hopeful graduate who soon quit the place. Within months got my SS and both kids as dependents got checks each month until 18. Used to pay college. Not once have they're contacted me since (over 10 years). Hang in there and fight!!! I made and kept copies of everything.

My kids received monthly payments too until age 18, and that was very helpful.

The paper-pushers at Social Security can be a pain but a few of them know what they're doing, and being persistent helps.

An update:

They sent me to the local social security doctor for an exam. A few days later they called me with questions about my antidepressant meds. I told them that depression is common with MS. They said that they might need to send me to a psychiatrist anyway because of the rules.

I told them that my neuro has scheduled an MRI for January and they said call us and let us know the results of that.

Then the next day they called and asked about my work that I did in my last and my previous job (10 years ago). I described my work and reminded them that in the previous job I had to sit while working and that I had great difficulties. The woman just wanted me to answer, didn't want explanations. I suppose it has to be that way or they can get mired in complications. She said she would send the report to the local social security office.

Meanwhile, I had an appointment with my neurologist and I brought a form that my attorney had sent me that was a questionnaire about my MS and the functions, etc... The doctor filled that out and I sent it back. I think they'll use that in case there is a denial.

The people on the phone have been polite lately but I have no idea if I am near getting approval. I suppose I'll find out within a couple of weeks.

If this is approved I'm hoping that medicare coverage won't be long after.

I'm glad to know that your case is moving forward, or at least it sounds as if it is.

Unfortunately, there's a 24-month wait until Medicare starts, or at least there always has been even though many have protested this policy. I haven't heard that it has changed. And I'm not sure if that's 24 months after disability benefits begin to be paid or 24 months after it's determined that your disability began.

Good luck with the psychiatrist. I too was sent to a psychiatrist--and to a clinical psychologist. The psychiatrist interview took only about an hour and wasn't difficult but the clinical psychologist put me through an entire day of tests.

I wasn't told what tests I was being given but later when I requested copies of my medical records I learned that I'd been given an IQ test.