Well I took the plunge upon Marsha's advice and talked with the company my husband 'worked' for ( just got fired for poor performance) I couldn't get the resource person who heads the department, but did manage to finally call when his boss actually picked up the phone. I could tell he was hesitant to talk to me, but I kept going. I told him what Marsha said in that Steve has HD. I explained just a little about the disease and said Steve was in true denial (a symptom that can't be turned off and on) and that he cannot evaluate his own performance etc etc. I worded it exactly as Marsha did in the post below. He said Steve had never mentioned it, like that was a big problem. I reminded him using different words, that Steve can't recognize the deficits. As Marsha stated, this is documented my the medical profession who deals with HD. He said he or the HR dept. will phone tomorrow. I asked that his status be changed from 'fired' to the fact he has a disability and if he is still to be let go, then he should be so with full benefits and 70% of his salary. We have 4 daughters who needs that and myself and him. He worked for this prosperous oil company for 29 yrs. He just turned 56. Steve is still in shock at how they let him go, without advance warning. He doesn't see that his performance was that poor. And cites others who mess up all the time. Ironically the company gives alcoholics time to go for treatment (and pays for it) and is it seems much more understanding than they have been to Steve, who gave so much to this company over the years. Sadly, he always thought so highly of the company and worked hard for them. He worked his way up from a much lower position into an executive one, then they kicked him out like a stray dog that wandered in, not even allowing him to go to his office to retrieve anything personal that was in there. He said he was glad he didn't bring his jacket that day... He can be so difficult at times, but I still care about him and all he has suffered with the details of HD and now this.... Please pray for me, him, our 4 young girls and this outcome. Thanks

BTW is there an advocacy group in the San Antonio area or elsewhere that can help with our cause if the HR dept. won't? I did write a note online to the TX governor.

Theresa

Theresa, did your husband have to sign any employment contracts over the years he's worked for them? If so, was there anything in there saying that it is up to the employee to disclose any medical conditions which might affect his work performance? The disclosure part could be important. He may not have been diagnosed with HD when he started 29 years ago but it may have been up to him to tell them when he was diagnosed.

I also think you're being a bit harsh on the company. They're not mind readers. If your husband has been acting erratically and the company has no idea whether it's drugs, alcohol, a mental illness etc making him act this way and nobody has ever enlightened them as to what his problem might be and he is in denial and won't disclose anything then they have to act to protect both their company interests and other employees. Especially if he has an executive role in the company where he has important decisions to make.

Consider being in touch with a labour lawyer for advice. There maybe something in this about wrongful dismissal. He does have disability rights that should give him some protection. If he has disabiltiy insurance through the employer he should be eligibile for that.

Thanks for the reply. Steve is still able to work very well. There are some things that he has problems with, but not enough that they should have fired him after 29 yrs. with out seeing what was bothering him or having him see a doctor. They do for alcoholics on the job.

He could be forgetful, but how many on the job are like that? I know he was doing some things that got attention, but he thinks they wanted to make changes and do some reorganization and eliminate his job to save money.

Well upon the advice of Marsha, I called HR and Steve's boss. His boss listened and stated Steve never told him about the disease. Actually GINA protects him from disclosing genetic info. as best as I understand the law, which seems to be spelled out simply. Also, with HD, as Marsha indicated the person doesn't see his deficits. Steve just kept trying harder to do better. It came as a total shock when they fired him. He is still stunned and despondent and plans to fight it.

I got through to the HR woman and she was blunt and cold. I asked her if she ever heard of the disease Huntington Disease and she had not. I tried to explain a little about it, but she was really tuning me out. She said the decision that was made regarding him had nothing to do with the disease. THAT WAS A VERY IGNORANT REMARK, GIVEN SHE DOESN'T HAVE A CLUE AS TO WHAT HD IS AND HOW IT IMPAIRS A PERSON. She didn't want to discuss it further and said the decision stands. I told her ADA protects Steve and we will be taking legal action. This is a decent size oil company with many facilities and boasts on their website in how they care about their employees and that is one of their core values. If anyone is interested in assisting in sending letters or phoning them to voice an opinion that would be helpful. I am considering going public with our case. We have four adopted daughters and this would make a great human interest story, bring HD to the forefront and the ignorance of companies to toss out a long time employee who gave 29 years of his life to this company. He always elevated them. See Tesoro Petroleum and read their core values and philanthropic and community activities and how they care so much for their employees. Steve is an example of the opposite. I am probably going to write to several editors of newspapers, where I have heard people read all the letters more than any other part of the paper. I may stand outside Tesoro with my daughters with picket signs, if I can find the time. I'm in Alaska where they have a refinery in Nikiski, Steve was there 24 yrs or more. A large office in Anchorage, REfineries in CA, Hawaii, N. Dakota, and corporate in San Antonio. I find the way they did this pathetic. There were no safety issues by the way. Steve tends to be very diplomatic and tries to give his all at work. With HD obviously, 'kickiing in" unbeknownst to him he didn't quite meet the bar. I happen to know many others at this company that waste time, complain about the company, etc etc. My husband was a target because he was a high salried employee and it was time to cut back. Which happens with others w/o HD!

Meanwhile our four young daughters have no insurance, little life insurance and will be now living below poverty standards, since Steve was paying partial child support until we divorced.

Theresa, on one hand you've said you and your children could no longer live with him in the same house because of the effects of HD on his moods and personality. But now you're saying he was perfectly fine at work and only maybe suffered from a bit of forgetfullness. The two accounts just don't gel.

You need to get a lawyer or workplace advisor, not spend all your energies picketing and writing to newspapers. A lawyer will tell you what rights you have and will make sure Steve gets all the benefits he's entitled to.



Edited 1 time(s). Last edit at 05/26/2011 08:34AM by itchyscratch.

Itchyscratch has a good point here and it may be what the HR person is referring to. It could be that they didn't notice cognitive changes but that the personality changes made it difficult for Steve to work collaboratively with other. I agree with the need to hire a lawyer. However, it couldn't hurt to call corporate headquarters and try to deal with them. I would also mention symptoms like irritability, inflexibility, OCD symptoms, and a loss of ability to 'read' other people's reactions. You might also want to mention other cognitive symptoms such as the loss of executive function (making a plan and executing it) and the loss of the ability to multi-task.

What about employee reviews? I have discussed some of these issues with lawyers in my family and they said that there has to be some warning - like a bad review, a warning something... Did he have any incling that they were dissatisfied with him?

I'm sure you have heard the old saying you catch more bees with honey. I really believe it is true. Approach the people at work as nice unaware people. Talk with them what happened? I'm sure if this is a big company there have been issues in thepast with your husband & he has been told. Remember you live thousands of miles away & possibly he's not going to tell you he was brought on the carpet, it would make him look bad in your eyes.

If the company was unaware of the HD and you approach it that way asking for their help in rectifying the situation they may bend over backward trying to help you. But if you attack, they can make things much harder for you & take long to assist you.

It works, I'm famous for taking goodies to the DMV, DR ,dentist, ss office, etc. I ALWAYS get the best service & smiles!!!!

I agree that medical privacy protects you and will help you change HR's mind. I would provide proof of his diagnosis date and maybe some Doctor's notes of any visits he has had and request that they change his status to disability. If this HR rep will not work with you I would contact her boss. If they ask why is was never disclosed previously you just tell them it is private medical information and legally you don't have to provide anyone with that information. Although had you provided his diagnosis before problems they would have had a harder time getting him terminated.

As a disabled person he does not have to disclose any private information, but it might help to show Dr's notes of his decline. You might have to get a lawyer since his status is terminated and he is not an active employee.

In the meantime apply for Social Security Disability IMMEDIATLEY, sign up for Cobra. Good luck.

The problem is, he needed to go out on disability before he got fired. I don't know if telling them after the fact gives you any legal right. Talk to them, and try and work with them, not against them, that will get you further in the long run, because really, i don't think your husband has a case, because his disability was not disclosed to them until after he was fired, and so the only way you might be able to get somewhere on this, is if they decide to have compassion. Putting up a fuss is not the best way to handle this. I'm also sorry, but no, i won't write or phone his company as you asked if we could, the reason is, i don't know your husband, i don't know how much his work performance slid, and if they fired him it's because he wasn't doing his job well, so how can i or others here support that? The fact is this, many people with hd lose their jobs, because their performance at work declines. The fortunate ones are the ones where either the phd, or the caregiver, usually the caregiver, catches on that their spouse is having problems at work, has the person take an immediate sick leave, go to the doctor and get paperwork in order, then goes back to the company and says, i'm leaving on disability. So it's not the company's fault that they didn't know, it's not their fault period. But, now that he has been fired, they have no obligation to give him his benefits, none.



Edited 1 time(s). Last edit at 05/27/2011 03:45AM by Barb.

His worst behavior came out at home, where he felt most comfortable and able to vent. I was his target. He was neglected and very abused as a child, which made him act out toward his spouse. This didn't come out in our courtship, but gradually worsened in time and the HD made it worse.... He could be much nicer to everyone else but me. The Emotionally Abusive Relationship by Evans spells it out.

Thanks for the additional info. I am trying to find a decent lawyer. Steve worked at the Corporate Office. The head person in HR and his immediate boss were not helpful. I just didn't know if I should make "waves" there with those above them or find an attorney to do that. It's hard to work full time in a demanding job, care for our daughters and get slammed by Steve when I try to help. He's given up already....after meeting with one attny, and I know he wasn't able to give enough details on the case or HD plus he can't see himself, reality and is in denial he has HD symptoms. The attorney took over 200.00 and sent him on his way with nothing. Steve was so uncooperative that he wouldn't give me the attnys fax no. so I could send info on HD, nor would he give me the man's number! I'm trying to fight the company that fired Steve and Steve is 'fighting me' , the idea he has HD and this is a nightmare. He's gone from a high salary to 400.00 per week unemployment. And we have four young daughters and I don't make much. We now have no health insurance either.

Marsha, I realize the importance in contacting a labor attorney who understands HD. I have not been able to find one online and I have spent hours looking. The disability law and genetic info. law should protect Steve, I pray. But I need one in the TX San Antonio or Houston areas. Steve is still planning on going to the Baylor HD clinic next week "to prove he doesn't have the symptoms" that being his latest stance. He's been all over the place lately, sometimes sounding so irrational wanting to open a franchise! and use all his retirement money! OMG he would have problems runnning a small beverage stand right now and keeping everything straight. His memory has been very poor for years.

I am unaware of any attorneys specializing in HD cases. I sometimes hear from people who want me to send information to their attorneys about the disease so I am sure that lack of knowledge is a common problem. I don't think we have any attorneys that post on the site either. But you don't have to limit your search to labor attorneys who have handled HD cases. Try looking for ones who have handled disability cases and then ask if they have handled cases for people with neurodegenerative disorders - Parkinson's or early AD - or with mental illnesses. You can educate them about the particular features of HD.