What to tell employers?

[PDaddy]

I am still working full time and driving safely. My voice is about 99% normal, I can type OK and my emotional liability is now under control with the wonders of modern medicine. I commute about 50 miles each way (with 'normal' Los Angeles traffic) and the drive is starting to be hard on my arms which are now starting to atrophy. My question is, what is the best way, what are the right things to say to my employer about my ALS DX? I am still 100% productive and want to keep working as long as I can; we need my salary and insurance. My wife would like to attend a meeting at my office with me and my management to 'plead for mercy'. Is that a good idea? I would like to propose to my boss that I officially work at home (telecommute) 2 days a week. Our company does not have an official policy about telecommuting. Any suggestions would be appreciated.

[liz]

I think it's a good idea to acquaint yourself with the ADA before you approach your employer to request accommodations. Local Centers for Independence can also be a good resource. People have reported wildly varying experiences dealing with their employers around issues related to ALS. A lot seems to depend on how enlightened the employer is.

[PDaddy]

Thanks Liz, that's a great suggestion, I shall dig into the ADA.

[contempoz]

Can you tell me what you are taking for the emotional liability?
Thanks & god bless, Rich

[PDaddy]

Can you tell me what you are taking for the emotional liability?
Thanks & god bless, Rich

Sure, I'm taking Zoloft (dosage?) It's really helping, but fortunately, I can still get emotional!

[Rob Kerr]

In my work physical labor was a large part of my job. I was an assistant manager for a large retail company so lots of the harder stuff could be delegated. I hid my illness for over two years until I was so exhausted and my performance slipped. I wish I had said something sooner because my boss started treating me poorly and didnt let up even after I explained wat was truly going wrong, I have never been lazy in my life but I think that is how my weakness came across to her. I went through human resourses and they put me on leave with pay until they found a possition for me. Unfortunately the job they came up with was mind numbing and after 15 years with them was degrading in my mind. I only lasted a few months and am alot happier doing what I like to do. It didnt take long to get my diability going, I am financilly secure at the moment........Take care Rob

[PDaddy]

This is great information, thanks all.

Would it be good or bad to let HR know BEFORE I tell my boss??

[Tall John]

Become VERY familiar with all your co's disabilty policies

[Rob Kerr]

You can research on the internet on the above. My companies policy was resonable accomodations, They dont have to retrain you but offer suitable positions that you can perform. Do you work for a large company? if so they can usually absorb the costs of modifiying your job. Smaller companies have difficulties providing reasonable accomodations because of limited suitable possitions. I went to my employer first because it was her obligation to work with HR. There are so many legal ramifications as to how disabled persons are treated that most companies want people familiar with these issues making the decisions. If you are mistreated or disaplined because of your disability it is grounds for legal action...........Rob

[Peg B]

Don't forget about your union, if you have one. Get their input first. Best Wishes, Peg

[PDaddy]

Thanks again everyone, I will dig into our employee manual and see what it says about ADA, there is no union, I work for a software company, so I would be considered management I guess. I know the VP of HR so that will help.

[Sammantha]

First get a note from your doctor stating your disability and talk with your doctor about what you can and cannot handle. They can terminate you if your conditions will cause an undue hardship on them, so find out if that would happen. If it does not they have to find an alternative postion or modify your current position thanks to the Americans with Disability Act. If they prove undue hardship and terminate you, you will be entitled to unemployment... Make sure you get everything in writing, they may be nice to your face but trying to get rid of you and covering there backs legally at the same time.

[CindyM]

This is a great thread. I wonder if it helps to find out who your allies would be once you come clean with your DX. Some entities will support you because they have to - the tip to visit your Union was a great one. Others will find support in unlikely places. At my job, I've been told by several people that if I ever need accomodations I should start at the top, as our CEO has a reputation for being understanding and supportive.

[PDaddy]

Wow, these are all great suggestions. I will start with an Ex VP who is very supportive and I guy I trust. I am now getting a letter from my Loma Linda Dr. that I will have in my hand when I/we inform management about my ALS DX.

This is from our employee manual, the company name is obviously changed:


102.1 Equal Employment Opportunities for Qualified Individuals with Disabilities

ACME will make reasonable accommodations for the known physical or mental limitations of otherwise qualified individuals with a disability who are applicants or employees, unless undue hardship to ACME would result. Applicants or employees seeking a reasonable accommodation should make their request in writing to the Human Resources Department.

[CindyM]

My employer says they cannot ask you if they should accommodate you, as that is not treating you with dignity. But they cannot deny reasonable requests. It just has to come from the employee.

[westjlittle]

I believe that it is a mistake to keep your illness a secret. There are protections in place for people with disabilities. There is a huge difference between an employer's response to an employee who they perceive "won't" lift a box and an employee who they know "can't" lift a box.

I believe that if the guy who worked for a retailer had brought up his condition sooner; a better job may have come up in the meantime.

Now I certianly have worked places where I wouldn't trust the HR people as far as I could throw them. However, my current employer has been supportive. They put in a ramp to the office and an automatic opener. They have supported ALS fundraising.

Just recently let me stop taking phone support calls from customers. It was no big deal for them since I told them 1.5 years ago. We all know that at some point I would not be able to work with customers anymore. That has happened over the last two months. Basically, no one understands me on the phone anymore.

Jim

[PDaddy]

Very good point! I am not really "hiding" my DX from my employers, I just want to be sure I say the right things to them at the right time. Right now I am waiting for my doctor to write a open letter to my employer stating I have ALS and I am still about 100% productive in my work. This week may be 'the week' I inform them. I reeeely need this job, and it's insurance is saving the day for me right now.

One thing I am somewhat worried about is silly. I don't want everyone I know to come up me and ask "are you OK?", "how do you feel today?", "what do you kids think about this?".... Over, and over again.....:rolleyes:

[westjlittle]

I think you may be surprised by how people respond. In my case, I found out who my friends really were and weren't.

Very few people will want to dig into the details. If you bring it up; they will discuss it.

Some people avoid it like the plague. Literally. I had several friends who really stopped calling because they couldn't deal with the terminal aspect of the disease. They are visibly uncomfortable when I am in their presence.

Thankfully, your real friends will appear and do things that you never expect. I hope you have the same experience.

Jim

[PDaddy]

After reading about the ADA and going through the company handbook, I "manned-up" and spoke with my management last Friday. The medicine I am taking for my emotional liability works pretty good but it let me down during my meeting(s) so my face tightened up and I couldn't talk too well. Anyway, they were very receptive and will be accommodating to my work at home a few days per week request. I also met with the head of HR who was also very nice about it. She knew nothing about ALS, not too surprising really, and asked what I needed and asked what should they do if I fall over. She needs to do some ALS research. I should find out today how my request has been granted. :-?

[Rob Kerr]

Something people who are in this situation with employers need to also know, that even if an employer accomodates you for disability and puts you into a new possition, they can legally pay you the prevailing wage. In my case this was substantially lower going from manager to a paperwork clerk. I kept it to myself as long as possible to get my financial affairs in order. We payed down debt and my wife got a higher paying job. I worked in an industry that was 90% manual labor and had I come forward sooner may have put me into something differant before i was ready, i looked out for my family first.


I hope everything goes well for you pat..............Rob

[hopingforcure]

Jim first of all wanted to give you a high five on the MDA stories. What an honor to be chosen, and what a well deserving choice in you.. P- I am glad things went well with work, sometimes it is amazing what little people know about ALS.. I guess I am the kind of person in life who prides herself on knowing a little bit about everything, which of course is dangerous according to my husband. But I just get amazed at people being oblivious to this disease. Everyone we inform is a possible step closer to dx.
I am like you, sometimes just hate to answer the questions, it gets hard. Someone on the board gave good advice and said people will for the most part follow your lead on how you act, how they will. I find this most with children, if I seem strong, they seem strong. I feel like this is the strongest group of people around... H4C.. My name from P...

[PDaddy]

I finally got word from management about working from home (albeit verbal only). The deal is, I can work at home on a 'as needed basis' and "safety first". All I need to do is call or email my boss and I get the VPN goin' and I'm good to go! I received a nice formal letter from my Neuro and gave that to HR today too. It said that I should work from home blah blah blah.

[PDaddy]

This is a great company to work for. I received a memo from HR permitting me to work from home when I feel like it and (but) they want to review the policy monthly. I can live with this.