Hi,

There have been varied responses to this problem. As Marsha put it, Steve due to HD was unaware of his decline in his ability to work as efficiently as he once did. He was only at this corporate office 3 yrs. He was at their refinery in Alaska 26 yrs. From what I have read on the laws he did not have to disclose he had a disability unless he needed assistance. Due to him being unaware of his cognitive deficits and poor memory and the other cognitive issues associated with HD, how could he go to anyone at work and say I'm not ok. He is also in denial about having symptoms, which is another characteristic of the disease.

I guess I am a little disappointed that in this forum and on this site that no lawyers respond, nor are any recommended who deal with the issues I now find myself in along with four young daughters, not to mention my spouse who is really unable to take positive action to deal with the entire issue. He has "thrown in the towel" already, despite him saying after being fired that he would "fight" Tesoro. Tesoro is a big oil company that displays in various rhetoric on their website at how great they treat their employees, how they are valued and one of the first lines on this site is that "They do the right thing." Maybe I should try to talk with the CEO, but unfortunately he is fairly new there, having come from another oil company and so is the lady under him.

After an employee works faithfully for 29 yrs. climbs up the ladder and gives his best (the company was always important to him and he always praised them and appreciated them). That seems so sad now in light of how they basically fired him quickly, walked him out the door, wouldn't let him return to his office and sent him on his way in shock.

It appears they should have some responsibility to see that a former great employee was deteriorating and delve a little more into that and at minimum ask him to see a doctor. I have read of others with HD had that chance and did indeed leave on disability or were rehired and then left on disability after being initially fired.

I wish all this could be as easy as calling the CEO and remind them of their "Core Values" on their website. I'm losing some of my stamina and am zapped. I did speak very nicely to Steve's boss and was professional to the HR person. She was curt and "as matter of fact"

Where are all the attorneys that must deal with situations like mine????????????

You are a little disappointed in this forum????! That none of us recommended a lawyer to you?! Who do you think you are??? We are not professionals here! We are people with hd! And caregivers! Supporting each other in any way that we can! We gave you a lot of support! A lot of suggestions, sympathy, and any ideas that we could! Don't you think, that if any of us knew of a lawyer we would have told you??? We are Not the hdsa! They're the ones that get paid to do that! Yeah i'm mad!



Edited 1 time(s). Last edit at 06/08/2011 02:41AM by Barb.

I may have over-reacted to your post, or maybe not. I'm sure you were just venting, and others may not take it as strongly as i did. I will stand by what i said, and i'm sure others may be nicer, maybe. But seriously, do you really think there are lawyers out there, that just roam the hd support sites, looking for low income clients? Sure they do. And do you not think, if someone knew of a lawyer, they would have with-held that info from you, on purpose, because we are just such a disappointing forum, and want to prove that to you? You may want to re-think what you have said to us, and when you ask for help, and don't get the specific answer you are looking for, maybe it's because we just don't know. But insults don't help anyone, especially the people that run this forum, from their own house budget, as a generosity to all of us...think about that one.

I thinkTeresa just wrote "I guess I am a little disappointed that..." which sounds like an honest account. I understand why you are disappointed - there are not many places to turn where you will find people informed about HD and you hoped someone could help you find a lawyer here. I think any good labor lawyer should be able to help you. I have a family filled with lawyers and when my husband was diagnosed we were concerned about his job and they did say that there has to be some warning - some reviews - some reports that say that his work wasn't up to par. I believe he also has to be warned that they have an issue with his work. Did he ever have a bad review?

I don't think you need to find a lawyer that specializes in HD - just try to find a recommended labor lawyer.

The problem you have, as many of us have found about including myself is that you can't make up for what you didn't plan for. There are HIPPA laws, but companies can't act if they don't know. I don't know if they have a responsibility or not, in my state they wouldn't. They can fire you for a bad haircut if they want to. You will have to shop the phone book for disability attorneys. We discuss a lot of legal issues here, but the problem is labor issues like so many others are different state by state. So "a lawyer" is not all that helpful. If a lawyer were here... and from my state... you would be told you are very limited on your options. That's why we recommend over and over to self protect yourself while at risk for HD because no one else will do it for you. All people with HD will eventually lose their job. Very few employers are all that benevolent. By the time a person is fired they also are probably not going to find another job either. The company can tie this up for a long time. I have found that if you want to talk to a lawyer you have to do the legwork to find one, and pay for the initial consultation. Generalities don't help in stuff like this.. it's about your particulars for this exact case.

You are definitely in a very difficult situation. I know it's frustrating when we don't get the answers we hope for. I just recently hired a lawyer to set up a trust for my husband and believe me it was NOT easy! I met with 3 different lawyers and none of them knew how to set one up (it was a medicaid reimbursement trust) they had no experience even though they were elder care atty's and setting up trusts is what they do. We were lucky in the fact that my husband had a great boss and he kept him working as long as possible doing simple jobs where he wouldn't be able to hurt himself or anyone else. My husband ,at the time was also able to communicate to his boss that he didn't feel safe driving big trucks anymore. He was a snow plow driver for the town and also drove other big pieces of machinery.

Has your husband applied for disability? Also, you might want to check and see if he qualifies to collect his retirement. My husband was able to get both of those even though he was only 41 when he was diagnosed.
In our state when a parent is disabled any children they have under 18 usually will qualify for benefits. It's worth looking into. Also call your assemblyman. That what I did when the state wasn't cooperating and within 24 hour I had a response. Good luck!

Thanks for the information. Yes an assembly person or ombudsman, representative etc are just some I may call on for help if this gets 'ugly' with Tesoro. I am hoping and praying that once Steve gets to the HD clinic and evaluated, the doctors there can write a letter in conjunction with an attorney to the CEO and to the HR dept. and things will be straightened out and he will be put on disability with full benefits and 70% of his pay. Right now unemployment told him he will get 400 per wk. We have four daughters and each other and live in separate homes. That will cover lunch, gas for autos, keep the lights on at home and not much else! This is all so surreal. I never expected this company to act like this to my spouse who proved he was a very capable employee for 29 yrs., then started slipping and out the door he went! Alcoholics on the job get better attention and treatment and rehab for their conditions!!!!

I am optimistic this will work out and Tesoro will see the light with doctors help, and an attorneys. If they don't I will raise hell in what ever way I can. I can get very fired up over extreme injustices. I do hope it works out in a positive manner, so i can settle down and try to focus on my girls. I feel so bad for them. This is not the life I wanted for them. I feel so inadequate trying to parent them and I have a lot to deal with and Steve just sits around out in space and has thrown in the towel already..... He is being so unrealistic and so in denial about HD, which I know can be the norm, but it can put such a great load on me. I feel it's one more of his battles I am having to fight. Steve has always been one to brush things under the carpet and not deal with difficult issues, so guess who had to......

I sometimes feel HD and all that has gone on and will come down the pike will destroy me and my daughters. We all look forward to leaving this painful world and living with Christ.

Feeling weary again....

Theresa

Thanks for your response and ability to understand my perceptions and frustrations. I have no idea just how far reaching this site is. It now appears to encompass some 'regulars' that like to look for reasons to become angry at how one expresses her concerns or questions, I don't understand the latter. I have no idea who read these and if there is a board that governs this site and if there are legal experts amongst this group or 'close at hand' should the need arise.

Info on many attorneys sites seem to focus on getting social sec. disability. That is not our current problem. Steve was fired for "poor performance" which included sometime being "disorganized" and not turning in all his receipts on expense reports. I am sure the company noticed other things and they all added up. They did not notice that he was a long term employee, who 3 years ago was capable to be hired into this executive position at the corporate office, but now suddenly and for the first time in 29 yrs. ended up with a "poor" review, which he tried to rectify. Given he has mainly cognative deficits, including poor memory it was hard to meet his boss's boss expectations, who didn't seem to like him and was fairly new at the company. His previous former boss gave him a good review months before and we even were invited to her home for dinner. The new bosses wanted to make changes, and saw Steve as the weaker link. They never considered there could be some medical issue involved as to why after 29 yrs he got a "poor" review, so uncharacteristically like him. It was, they thought an easy time to get rid of him.

Meanwhile, Steve sits at home, spaces out in front of the TV, thinks he can now use all his retirement money on a franchise and doesn't want to think about Tesoro. That's maddening....so off I go with a torch and sword to battle.

I'd rather be in the Bahamas.

"It now appears to encompass some 'regulars' that like to look for reasons to become angry at how one expresses her concerns or questions"

Your darn right there's Regular's here. I don't LOOK for reasons to get angry, but it's pretty hard not to notice insults being thrown at the people you love and care about. Insults to the people here are what make me angry. So don't sneak your insults in, and then patronize when your insults get noticed. I may have hd, but i'm not stupid, and don't have time for this kind of attitude @@

Theresa, has Steve actually been diagnosed with HD and if so, when? And did he receive warnings at work before he was sacked? Two simple questions.

The site was founded by Steve, our friend Cristy, and me back in 2000. We are friends who met in the old MGH chatroom. All three of us were seeking support because of HD in our spouses' families. Back then HDSA had a site with minimal information that hadn't been updated in close to two years and was put up by a volunteer. They had no real interest in the internet and said so. We developed this site to share what we were learning about HD and to have a forum where the HD community could come together, get support, share information, and discuss issues and problems.. Cristy has gone on to other interests but Steve and I are still here and still maintaining the site. In 2004, Jerry Lampson who had started the HD Lighthouse died and we were asked to take over his site and we did. Steve is a software developer and I am a sociologist with a Ph.D. from Bryn Mawr College. There's just us, no board, no legal experts and in fact I don't think there ARE legal experts in HD. I wish there were. We accept no contributions. This site is funded out of our household budget (this word is now singular because Steve and I are now a couple) and so are my visits to conventions to learn more about the research. In 2007, the HDSA asked me to develop and maintain the research section on their website (which is now extensive and regularly updated). In 2008, the HDSA asked Steve to serve on the board. This site is referenced in textbooks and linked to by NIH and various Centers of Excellence. CNN and the BBC have both linked to us when doing stories about HD.

So basically this site is just what the slogan says - For HD Families By HD Families. No lawyers, no doctors, no researchers, just people constantly trying to learn more about HD and a community of people who are willing to share experiences.

I'm sorry you have HD, I can understand this is very difficult to deal with and my issues must pale in comparison to yours. I hope you have a pleasant day.

Theresa

Yes 6 or so yrs ago he had the blood test done and it showed he had the defective HD gene.

Steve said in Jan. he got a poor review and tried to be "exemplary" after that, meaning do everything right. He has always liked to perform well on the job and do his best. With HD symptoms and poor memory creeping in, doing ones best doesn't come across to others as such.

He never said he got a "warning." He was in shock when told he was being dismissed. He did not see that coming....

Good grief. I'm getting whiplash from the passive/aggressiveness of it all.

Thanks for the details Marsha. So do you deal with HD families as a social worker or what line of work are you involved in? I appreciate your input and help. Steve's mother is in denial about a lot of things including the HD symptoms that have been present for sometime. She is in CA. His father who is in the latter stages of the disease lives in AK, but Steve never met him until Steve was 23 and had returned to AK where he was born and his half-sister 'found' him. His father remarried before Steve was even born, and had 3 more children, all adults now and at risk. They all have children. One half brother is thinking he has symptoms, but none have been tested. They all live 3 hrs from here and there has never been much communication with all of them.

My family is in IL and for a number of reasons we rarely communicate. As I have stated, Steve is in denial and mentally has been getting worse for years, mainly acting out at home, with anger, irritability, hostility, apathy, etc. These being some of the most noticeable symptoms as indicated on HD information sites when "onset" occurs.

Again, thanks.

Theresa



Edited 1 time(s). Last edit at 06/09/2011 10:13AM by theresa.

I am a sociologist and although I've done some teaching on the college level, most of my career has been as a consultant doing program evaluation (criminal juistice diversion programs, prison programs, programs for juvenile delinquents, drug courts, and child welfare). I closed down my consulting business to take care of my first husband and now maintain the HDSA website's research section as well as do some writing for print for HDSA as a part time consulting job. I've never done social work. My involvement with HD families is as a fellow family member and self-appointed advocate and website editor.

My late mother-in-law was diagnosed in 1997. She was the first in her family to have the disease so it was quite a shock.

Hi Marsha,
So your first husband had/has HD? I am sorry to hear that. Is he in a care facility or ???

Your work background is quite interesting. Should an attorney I find need to contact you for more information on HD what is the best manner to do that? Do you have a direct email address he or she could use?

Thanks.

Theresa

I don't think he he got a "poor" review. He got a poor review. He knew he had the gene, as did others.. and HD was going to kick in sometime. The company is not going to watch out for each employee... and monitor their health.. in fact they are not allowed to do that. How well can he do his job if he now can't manage his own life? I think the review was accurate. They can't pay people to not do a job. They are not doctors. They need the paperwork done. There were all sorts of points along the way where he could have protected himself to an extent from HD and what it was going to do. He could have been having a doctor monitor his progression, could have insured, could have tried to have HIPPA to cover his disability for a short time. Now he sick and dieing.. probably won't be working again and is probably in need of medication, and needs some sort of insurance and income. His former employer won't be doing that for him. They gave him the opportunity with the performance review but he couldn't improve. Chances are he declined further. They had no idea why... and if he didn't care why, they can't be responsible to care either. To prove anything at all, he will have to have a proper diagnosis. Prove his disability. From a doctor. MRO is right... he needs to start collecting his social security and receive his medicaid and medicare because he will need it to live out his time comfortably. He's not getting better.

Eric,

Thanks for the response, but you don't understand that HD affects the brain in such a manner that the person with HD lacks self awareness and isn't aware therefore of their own deficits. Plus "organic denial" is a documented symptom of HD. A mentally ill person with acute paranoia could not explain that to their boss no better than Steve could.

T

Eric knows that and he's right in that you've got to pursue a diagnosis now. The company isn't sounding sympathetic and they might not even believe you. There may be something a lawyer can do but he'll need that diagnosis. Nothing can happen without a diagnosis and documentation. That has to be the priority now.

You've been saying that there was no warning. Yes, there was. He got a poor review. I don't know how much more strongly they could have warned him then putting in writing that his performance wasn't up to standard.