Disabilities question........
 

Hi all,
Does anyone know if Neuropathy (not specifically diabetes Neuopathy but Neuropathy in general) is covered by the Americans with Disablities Act? I am going to try to get my Principal at the school I work at, to let me work half days for a while to see if I can handle it or not, taking my pain meds.
If you know can you give me the specifics of where it's at in the ADA.....Thanks! Roxie

An exerpt from EEOC:

http://www.eeoc.gov/types/ada.html

A qualified employee or applicant with a disability is an individual who, with or without reasonable accommodation, can perform the essential functions of the job in question. Reasonable accommodation may include, but is not limited to:

* Making existing facilities used by employees readily accessible to and usable by persons with disabilities.
* Job restructuring, modifying work schedules, reassignment to a vacant position;
* Acquiring or modifying equipment or devices, adjusting or modifying examinations, training materials, or policies, and providing qualified readers or interpreters.

An employer is required to make a reasonable accommodation to the known disability of a qualified applicant or employee if it would not impose an "undue hardship" on the operation of the employer's business. Undue hardship is defined as an action requiring significant difficulty or expense when considered in light of factors such as an employer's size, financial resources, and the nature and structure of its operation.

An employer is not required to lower quality or production standards to make an accommodation; nor is an employer obligated to provide personal use items such as glasses or hearing aids.

Jarrett was right on target about
 

ADA.
What kinds of issues/problems and the like are going thru your mind when you ask this question? Because if it's the walking and steps that are issues, there can be easy changes made, if it's the hours standing for your job, and wheelchair accessiblity - some things can be changed and modified easily, usually without a great deal of effort or expense.
By putting out your problems, we all can help you find the resources you need to get you thru all this.
Take super good care now! - j

HI J,
I'm worried that I don't have the stamina to work a full day in special education Life Skills right now. I want to ask my Principal about working only half days. I'll have to take one afternoon a week off anyway because of my infusion (the company that sends out the nurse is only open Mon-Fri.)
I want to tell the Principal I have Neuropathy and because of the accompaning nerve pain and lack of stamina I am not able to work a full day. Any suggestions??? Thanks! Y'all are great!

Roxie,

A qualified individual with a disability is defined under ADA as someone who can perform the essential duties of the job, with or without reasonable accommodation. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities. While the ADA lists some categories of impairments, it does not list diseases or illnesses. Each disability is handled case by case.

The definition of disability would seem to work in your favor, as long as there is a documented history. However, you can't use the ADA to limit the amount of days or time you work. The first part of the definition means that you need to be able to meet all job obligations listed for your particular job.

If there is some way that accommodations would help you perform your work full-time, then you may very well have legal standing. Otherwise, you would need to pursue other disability options, as apply in your school district, locality, state and so forth.

Based on what you say so far, it seems you are doing the right thing by trying to work with your principal and forge a solution that would allow you to work less than full-time. I know others here have been in the same situation and perhaps have advice to offer. I know that this is can a sensitive area about which to post. You really do need to be careful in what you divulge, but on the other hand, the more you can say, then the more suggestions you will get.

rafi

HI Rafi and all,
Thanks for your answers. I hope my Principal will be willing to work with me, at least for a few months. I'm trying to do what I can to make him happy and hopefully he'll do the same.

Hi. With disability I think some depends on luck and less of issues. I know some people I was inpatient with for eating disorder had been on it for a long time and others who were more extreme couldn't get it. I had thought of trying when I had that issue and have the paper work I had to fill out. I would try to talk to your principle so if things don't work out you can have your docs start the paper work. I'm sure it can take a while like all things I would think especiallly since you have been having the ivig you may have a lot of luck with coverage. I do think your health is number 1 and rushing to work and getting overwhelmed physically and mentally may make things worse in the long run. Not with this issue but in my past I have rushed recovery to end up backsliding. Your health is number 1 and state your needs. Take care

I would be 'wont' to disclose your PN disability to co-workers.
This is a 'no-see-um' disease and is not understood very well
by the general public. It sometimes can create adversarial conditions because they are not able to understand why you have a disability and no amount of trying to make them understand will help. It is difficult enough to try to make spouses and loved ones understand. That's why we come here.
We do understand.
If your principal is not easy to work with, you would have to go
to the school system to be made eligible for application as a part-time worker. You may find that you may not be welcomed back - at the same school.

We talked with a guy from the National Institute on Disability and Rehabilitation Research about how we should go about talking to my Principal about my disability. He talked with us for 50 min on the phone and gave us a LOT of info and tips. So I think we're prepared to talk to the Principal. If the Principal isn't receptive to the idea of my working part time for now, then we'll take the next step with a much stronger letter to the School District. I've worked for the district for 13 yrs now so I hope that has a little impact on keeping my job position.
He also told us that I should file now for SSDI, so we printed off forms for that. If any of you have tips on filing for SSDI we'd love to hear them! He said it's much better to print off the forms and fill them out at home so you have time to think about answers as opposed to doing the interview over the phone and having to come up with answers quickly. So that's what we're going to do.

Social Security Disability (me and Alan are on it), usually takes 2 years from when you first apply. The only two times you get it immediately is if you have ALS, or end stage renal failure (because dialyisis is medicare run), now don't ask me why this is, this is what the people at the Social Security Office told me.

Now I had to do the 2 year wait thing. I went down, I was examined, (not for neuropathy but for degenerative joint disease), They make you jump through hoops, they make you see their psychiatrist), who tells you a bunch of numbers in sequence and then makes you repeat them back to him. This is how it was for me.

Now Alan, is a completely different story. He was approved almost immediately. 5 years ago, he applied, they sent him to their medical examination place. The guy gave him an emg, stated out loud "Oh my god, you don't feel this??" and he was approved immediately. But it takes approximately 6 months after you get approved to get your first check. Alan got approved and got his first social security check 6 months later. And he got medicare two years after that. The only time you get immediately on medicare is if you have ALS or end stage renal failure.

Me, I waited the two years (had to go to a lawyer who specializes in disability), I got approved, got the checks.

Oh, by the way, from when you get approved, it takes 2 years to get on medicare. That was how it was way back when.

Don't know if they've changed the rules today.

HI Mel,
It sounds like the rules are still the same as when you and Alan got signed up, from what the guy at National Institute on Disability and Rehabilitation Research told us this morning. I'm going to go ahead and sign all the paper work and get it sent in and hopefully work part time for a while and see how things go.
The new pain med...Balacet 325 is helping with the pain. I have to take 1 1/2 pills 4 times a day but at least it's helping....but man does it ever make me tired. Seems ya can't win with pain meds!
Hope you and Alan are having a good day. I have infusion #4 tomorrow afternoon.......the fun never ends! LOL

HI Bob,
I totally understand what you are saying. I'm not planning on discussing my PN with coworkers......who haven't been supportive up till now anyway. I know everyone will ask (because they're nosy) why I was out the last 5 weeks of school last school year.......they'll just have to wonder!
I'm SO thankful for all of you here who DO understand! It's nice to know you're not alone in all this!
Gina,
I plan on being careful when I return to work. I know I just can't do the things I used to do before, I just can't.
I hope you are doing better.....and that the pain isn't too bad.......

Hi Roxie, talking from my own experience, be carefull who you confide in and don't trust anyone that includes your boss, decisions that you make now can affect the rest of your life, just tread carefully and you will be right.

Sorry, I didn't realize it had already been discussed.

Roxie
 

yes be very carefull who you talk to. Bob and Brian are so right about that.
My youngest son is blessed,he know's how to fill out paper work. He
know's how to deal with the Gov. It's terribal what they put some people
through. I've seen some people,myself included have no problem at all.
And other poor souls battle for years. You seem to be going in the right
direction. I'm a Diabectic but i have polyneuopathy's mine was just not
judged by the diabetes alone. Get all of your paper work from your Drs.
and get a Dr. who will be willing to help you through this,some can't or
won't. Good Luck your heath must come first. :hug: Sue

HI Brian, That's ok. I know it's going to be difficult to avoid the question at school as to why I wasn't there the last 5 weeks last school year and now (hopefully) returning working only half days. My school is a gossip vine! I'm not even looking forward to returning.

Roxie
 

It was that way when i was a nurse, but could get pretty funny if
if you were not the one being talked about. Sue Let's talk about Brian
now he looks soft and sweet, thing so???

Sue.......that's so very true......and that long tail! LOL LOL

Thanks Sue, :D :D now all i have to is convince the ones that really know me :D :D now that is going to be hard :) ;)

Sue and Roxie about Brian?
 

I HAD to chuckle, but, at the same time Brian's so nice - I blushed {and it definitely wasn't a hot flash!}

Do keep any possible disability issues as lo key as possible for your own protection ...look at what all has happened to SeamsLikeStitches ? Who has been very quiet and probably very busy...I hope.
However, when things get truly impossible-DO speak up to the appropriate people about what all can be simply 'fixed' or changed.
As for being careful? That is the best way to be! Goodness knows how many of us get into trouble and fall when we get totally distracted. That makes us one bunch of slower, more thoughtful and careful planners about EVERYTHING we do...every single thing... But, we do tend to muddle thru it all!

So much else to think about other than what you WANT to think about?
Good thoughts a'plenty for now - j

Brian
 

your so welcome,convice nooo you don't have to convice anyone.
Roxie likes your long tail,and Dahlek is having a hotflash,my gosh
your one lucky dog,so to speak. :D :D Hey to the rest of you. got
any good well tails :D :D Sue

Good luck on your next treatment. I'm glad your going to be careful. As for not telling or telling coworkers. Now I'm not saying this will be your issue but hjust so your prepared. What I have found with my eating disorder and taking time its better to just be honest. Some how people find out and really when you just explain like your under care and are healthy enough to preform your job the talk will stop. You will get your "caretakers" that are annoying but better then gossip. I will say you will see who your true friends are and to me "gossipers" are not. As for disability I don't get it so Melody what are you suppose to do for the 2 years while waiting? By then you may be able to work. I have no clue about insurance stuff. Just that mine sucks but at least I have it. Hugs

Roxie
 

Hi - you've gotten some good advice here... did you talk to your principal yet? As mentioned - your co-workers dont need to know - BUT - you need to get this officially presented to HR - that you do need accomodations (they will ask for MD notes for sure).... not only does this let them know that you truly have health issues - but "protects" you, as mentioned, from a potential termination due to your health (once presented must be taken into consideration and you have handed the liability to the employer who will be much more hesitant to take any adverse action against you).

Reasonable accomodations unforutnately are often left to interpretation of the employer and a point of dissention - but with the large employee base like it sounds you are working with - reassignment to a part time position sounds like it would be feasible for them if necessary. At least presenting this officilly will ensure you can protect yourself! If you do at some point need to go on disablity - does your employer have a plan too? This is usually quicker to get - but if you are terminated before you can file a claim then its useless....

SSDI of course is another animal - you would probabably be required to get both.

Wish you the best here - unfortunatey coming from a backgorund in HR - I saw employees ending up being terminated because they did not come to us with their issues - and many companies are unethical enough to cut their losses even though they may know you are sick - because it hasnt been presented to them formally...... however, once they are notified of your medical issues - they must tread very carefully.

Hang in there:)

Roxie:

Here's exactly what you should do (because I had to do it myself).

When my son was diagnsed with Aspergers, I simply looked it up on the internet, printed out a few flyers with the explanation on it, and when family members would say "What the heck is Aspergers Disorder?" I would hand them the piece of paper. They would read it and they would go "Oh, that's what it is".

Now I read in your signature that you have Chronic Anoxonal Neuropathy and Myopathy. I tried googling this to get a simple explanation and what came up was only stuff a doctor could interpret.

So if anyone on these boards can write you up a simple layman's explanation of Chronic Anoxal Neuropathy, then you can run it off on your computer (make a few copies). Keep these copies in your purse.

When you feel the need to share what you have with whomever you need to share this with, simply whip it out of your purse and simply state "this is what I have, I hope you can be understanding of what I'm going though".

Hopefully it will stop them dead in their tracks.

Hope this suggestion helps you.

Sincerely,

Melody

The Mayo Clinic overview article on neuropathy--
 

--might be enough for explanatory purposes:

http://www.mayoclinic.com/health/per...opathy/DS00131

There's a lot of good info on the Mayo Clinic site. However, their B12 information is crap. I've been after the people who are supposed to respond to comments, and it has improved somewhat, but it still is unreliable.

It is shameful that an institution of that prestige and importance would allow misinformation so basic as the definition of "pernicious anemia" to be wrong and outdated by decades.

Do not use them as a resource for B12 information.

rose

Here ya go!!!!
 

Roxie: I just simplified the whole thing. While it is not the whole explanation, with causes, effects, meds, whatever, it will get the message across.

Whomever you wish to show this information to, well, just in case they are a supervisor, or a boss, or a non-medical professional, this explanation gives them the facts they need to understand better the condition known as Peripheral Neuropathy. So copy and past the following, either put the info on index cards and carry around with you, or simply copy and paste into your word processing software, print out some copies, have them ready and whenever you need to make someone really understand what it is that you have, well here it is!!!!

-------------------------------------------------------------------------

Peripheral neuropathy is a term used to describe disorders of your peripheral nervous system. Your peripheral nervous system includes nerves in your face, arms, legs, torso, and some nerves in your skull. In fact, all of your nerves not located in your central nervous system — which includes the brain and the spinal cord — are peripheral nerves.

When damaged, your nerves can't communicate properly, and that miscommunication causes symptoms such as pain or numbness.

Peripheral neuropathy often affects people with diabetes and autoimmune diseases such as rheumatoid arthritis and lupus.

If a sensory nerve is damaged, you're likely to experience symptoms that may include:
Pain
Numbness
Tingling
Muscle weakness
Burning
Loss of feeling

At times your symptoms may be barely noticeable, and some people go years without realizing anything is wrong. For others, symptoms are constant, and especially at night may be almost unbearable. Signs and symptoms may include:
The sensation that you're wearing an invisible glove or sock
Burning pain
Sharp, jabbing or electric-like pain
Extreme sensitivity to touch, even light touch
Lack of coordination

--------------------------------------------------------------------

Thank you all for the info for PN. I'll print it off and use it at work.
I had my 4th infusion on Wed. and still feeling like death warmed over from it.....nausea, flu like symptoms....the works. Do you think this is going to happen after each infusion?? This time it was the worst so far. I'm going to mention it to my dr. when I see him.....maybe the dose is too strong??

I do believe that your post IVIG symptoms are fairly common side effects.
They usually diminish somewhat, over time.

Yeah, Roxie.
Don't worry. Alan felt like he was hit by a mack truck the first time he had them.
He has had over 10 and now (at least for him), he just sleeps through the whole thing and has no side effects whatsoever.

So don't feel down about this. Your body is probably getting used to all those thousands of anti-bodies doing their stuff in your body. I call them "little warriors". Alan laughs. I say to him "just imagine, little warriors going into your body, attacking all the bad guys. Like little ninjas".

He laughs.

Feel better soon.

Melody

HI Bob and Mel,
Thanks for the encouragment. I truly feel like I've been hit by a mack truck! I'm just totally wiped out and ache all over. I had the infusion on Wed. afternoon so I'm hoping these symptoms go away soon. Two and a half days of this is about all I can handle!

Just to be sure, I'd check with the infusion people (nurses, docs, staff, etc- maybe even talk to any other patients who are there for the same type infusions) to be sure. It may be you are having a more negative reaction s/e than is customary. Double-check. Redundancy never hurts.

Hi Roxie,

I applied for SSI in November 27, 2006 and was approved in Feb of 2007. This disease is on the list which you can get on the Social Security web site. I did my application on -line and brought all my paperwork to the local office. I didn't have to wait 2 years nor did I have to have any other testing done by the SSI office. I did however have all of my doctors visits and test result copied so that I had all the information on hand when I applied. I'm not sure why you wouldn't also just apply for FMLA leave at the school. This also allows for up to 13 weeks of time off or you may use days or partial days as needed. You can check with you HR director at the school. Good luck and I do agree no one understands this disease so its very hard to make them understand just how painful it it.

:hug:

Hi Kemmy,
Do you have other issues beside Neuropathy? is it Neuropathy related to Diabetes? I don't have Diabetes. My Neuropathy is Chroinc Axonal Neuropathy. I have copies of all my tests thus far. I hope I don't have a long wait and fight for ssi.
I have used 6 weeks of my FMLA. When school starts on the 20th then my pay starts over for the year and then my pay will be 0.......and I won't have money to pay for my insurance premium. :( So I have to go back to work so I can pay for my insurance. (like so many discussed in the Sicko movie)
My husband and I have a meeting on Monday with my Principal to see if I can work part time for a while.....as my dr. recommended.

Roxie, Please be very careful...
 

what all you say to the principal - more importantly.....Did your doctor give you a letter or note stating that you MUST work on a limited schedule?
Do NOT just give that letter to the principal - be sure you have more than one copy for your own files and uses....
If you can at least work part time with some flexible hours while this all being sorted out that would be good.
As for giving them a copy of medical explanations on your condition[s] Do not do that - any and all elaboration of your medical condition should be from your doc[s] to the HR reps for your school system. Let THEM do the looking!
Copying off explanations and giving them to family and friends is one thing...as they have to know and understand you are living with a CHRONIC condition. Employers will 'let you go' quick as a bunny if they REALLY understood - get my drift?
Hopefully you are near a large metro area that has attorneys who specialize in dealing with this all...one who can outline your options and any time restraints/constraints there could be in terms of the laws...
There is a LOT of paper, medical reports, diagnoses etc that go with this all.
Some docs charge for copies, others do not [I've found I can get copies of my records-I ask for them at least every year - and then fill in the blanks of the other doc records as needed - it's much cheaper that way] Some medical offices can charge $5. a page for the 'labor' and 'handling' to get you your copies...
I just think that talking to a lawyer about your options, well, it could be cheaper in the long run to know what info you need to get, and what it all could cost...I sure wish I could be of more help tho!

HI J,
Yes my dr. wrote a letter for me saying he wants me to work part time for now. I'll be sure to have copies of it and not give out my original. We won't be telling him any info we don't have to give. I'll let the district notify my dr. if they want more info.
We talked to an atty the other day on the phone and he gave us a lot of good pointers and tips. I'm not looking forward to the meeting on Monday......my Principal can be an *****.

Good!
 

That you are doing both!
As for the principal being a particular type of animal? Well You have to admit it comes with their job? Good that your husband's going with you tho....
I never go to any doc appointment or other legal things [a friend has had some problems] w/o a steno pad and 3 working pens! That I write down all that's being covererd, well, no wool is being pulled!
With some folks, that gains respect, with others fear - depends on how they plan to 'play games' or get things done. Me? I find that it's always good to have a back-up set of ears+brains in important situations....this will be one. Just be your nice, factual assertive self. Never lie, nor volunteer facts. BUT always be truthful so you dont get caught up at a later date.
Now don't fret, rest, and keep your feet dry? Or, better yet, send some of that wet up here? No water rationing/restrictions yet.....
Take care - j

While I am not familiar with your employment history and financial situation, I seriously doubt that you would qualify for SSI. You, perhaps, might qualify for SSD. These two get mixed up all the time.

If you switch to half-time employment, that is likely to bring in too much income for you to qualify for SSD. What most folks don't realize is that the determination is made based not on what work you do, but on how much income. For most people, they have to either not be working at all or only very little in order to qualify.

I really wanted to let you know so that you do not get your hopes up, especially if based on the wrong things. Of course you do know your situation better than I . . . also, if you want to PM me, I can give you more info.

I performed evaluations for SSD/SSI for many years. I have a lot of knowledge, inside info, contacts, etc, etc. I also successfully negotiated my own SSD case, without having to appear before an ALJ (Administrative Law Judge).

rafi

Roxie, you have brought up a very interesting quandary that many of us face. The legalities are very important and you do have to be careful, but there is also another side fo the story, and that is the emotional suffering many of us endure in this type of situation. Before I became ill and was a practicing physical therapist, I noticed problems that many of my patients had: often their supervisors, or their child's teacher or principal, or anyone in authority -- instead of reacting with compassion to their situation, would react with downright meaness, a reaction that never failed to shock me. Often these were people that were considered "good people", church people, well thought of in the community. But when asked to make concessions for someone with a disability -- even a child -- would be unbelievably cruel. Then when I became ill, I experienced it myself. I had always been an excellent employee and had gotten outstanding annual reviews, but when I asked for a transfer to a position that required me to be on my feet less my supervisor (who was post-polio and received special consideration herself!) reacted visciously. I had to get a lawyer to accomplish this simple transfer. I have seen a principal of a school fight to keep a beautiful, smart, charming little girl out of his school just because she was on crutches (before there were laws about this). I have just never figured out where this comes from. I have heard explanations that these people are afraid, or feel threatened by anyone who isn't totally healthy, or whatever, but I can't see why that would make people be so awful. So, in addition to the pain and disability, we must sometimes endure unexpected cruelty. It was so demoralizing to me. Even my neurologist, who knew I was experiencing pain so severe that I was suicidal, told me that I would never get SSD because "even people in wheelchairs can work", and that I was better off than that. I was so depressed for so long that I never even tried to get SSD, and am past the time limit now. All of this is just to say that I hope you protect yourself emotionally as well as legally. Be prepared that your principal may not be supportive, and don't let it cause you emotional pain. There is just something perverse in some people. When we are down, it hurts to be kicked.

Dakota: You said: " I have seen a principal of a school fight to keep a beautiful, smart, charming little girl out of his school just because she was on crutches"

Oh, I've seen many people react to people with disabilities in that way. I never understood their reactions or why they felt that way, UNTIL, my friend who is 64 years old, once told me "I can't watch Christopher Reeve on tv, I won't do that to myself". Well, after I picked myself off of the floor, I asked her "why on earth can't you watch a wonderful man who has gone on with his life, his wonderful family, who helps people with spinal disorders, why can't you watch him on tv, what does it have anything to do with you"???

She was quiet and said "I am too sensitive, it gets to me, I don't want stuff to get to me". Then she told me she can't watch any of the stuff on the Disovery Heath channel (where they have dwarfs, giants, people who are disfigured, etc. etc.) because she just can't stand it. She needs perfection around her.

This is the same woman who knows exactly where everything is in her drawers, the socks face a certain way, (she's extremely OCD). As a matter of fact, I found out yesterday that in all her 64 years on this earth, she has never let the shower water go on her face. She cannot wash her hair in the shower. She'll have a panic attack because she thinks she's drowning. She's been washing her hair in the kitchen sink all her life.

So I gather that people like this can't stand things out of their comfort zone. They limit themselves to only see perfection, have things in straight lines, are very stubborn in their approach to life. I can't tell this woman anything. She knows everything. Now sometimes she's right, but not every time.

People like that lack a kind of empathy. They live in their own bubble of their comfort and to say that "I can't watch Christoper Reeve on TV". is the same as saying "I can't watch anybody with a disability, it upsets me".

My answer to her was: "you have to grow up". She's 64 tomorrow. Don't think she's about to change in her thinking.

If we are brought up to think a certain way, well it's very hard to change.

And it absolutely hate principals who can't see other people's viewpoints. Isn't this how we grow and learn in life??? I'm still growing and I'm still learning, and I hope to do so until I leave this planet.

I've learned, that when someone says something hurtful, inappropriate or downright mean to me, well I just look them in the face and say "now why on earth would you say such a thing to me". It works every time. They just stand there with their stupid mouths open. They really don't think before they speak. And I've never been one to idly stand by when someone says an inappropriate thing to another human. I just gently chide that person and say "how would you feel if that were said to you?"

We have to stand up for one another.

Melody