Hi everyone - I'm new to this forum and have been reading a lot of posts on this sight and it is great to see and feel like I'm not the only one going through this. Not that I wish this on anyone, just good to know I'm not alone.

I'm 35 and at risk. Has been a part of my life now for the past 10 yrs or so. My dad had it and took the denial route even though he knew his dad had it. Loved my dad and was a great guy, but that is how he handled it. I haven't been tested, but started the process yesterday. I spoke with a genetic counselor and have an appt. scheduled for the first week in Feb. She told me it will take 6 wks. to get the results back. So this will take at least 2.5 months to get the results from start to finish. I was pretty shocked at how long this process can take. I'm scared, but it helps a lot reading about others who have been through this.

The past year and a half has been hard after getting a divorce that I didn't want. I think deep down she (ex wife) was terrified after finding out this was in my family. We had already been together for 2-3 yrs. before the HD possiblity started looming for my dad. I didn't even know what HD really was or what it entailed until it started coming up in conversations more and more about what may be wrong with my dad.

I signed up for disability insurance (individual) about 6 mos. ago and one of the questions was any suicide in family. I answered no, but remembered (last night in the middle of the night) I had told my old dr. that my dad had committed suicide, which he did. I have my old medical records, and after looking this morning saw where he wrote that in them. I'm freaked out and concerned about this now and wonder what I should do, if anything.

I would appreciate it if anyone had any advice or suggestions about this. The insurance process scares me so much after reading about people who get denied (yrs after paying on it and thinking everything is ok) because the insurance company finds something when a claim is processed. Once again, any advice would be appreciated.

I just wanted to say hi . You do have to do something about the insurance , I would think ; because your right they will try to find things that might help them deny claims . But , I am not sure how I would go about fixing the policy . Someone else might have an idea . Dave is on the forum , and I find him very knowledgeable about insurance matters . My best . db

HI,
Right now I'm in the middle of the disability insurance nightmare! My PHD had/has disability insurance through work. He was diagnosed in October and is on short term (company is self insured for STD). I am trying to get the paperwork together for long term and its pure hell.

What I will say is this, all the way through the long term disability docs, it talks about offset of SSDI. So basicly if you get SSDI they are going to deduct the amount of SSDI from your LTD benefit and then you get the rest. Well, in our case this isn't going to be much. My PHD had a good job but LTD is based on his "base pay rate" not his total earnings with bonuses. His bonuses made up almost 50% of his pay. Comparing this to his SS statement, I wonder if offset will be close to 100%.

We did sign up for the "additional" disability insurance and if/when he becomes completely unable to do anything for himself he will get an additional benefit of 15%. This portion is not offset.

Which brings me back to the only reason why I'm bothering with this nightmare of paperwork, for the crappy 15% because I suspect thats about all we're going to get after the offset.

Before you go calling your insurance and risk being dropped, I would read your policy very well. It should have a copy of the portion you filled out at the beginning. I know when my PHD filled out his, there were no questions pertaining to HD or genetic diseases. Also, some of the questions were worded with "in the last 2 years has...." so some of your answers will only go back to 2 years before you applied.

I know, before all you readers jump all over me, every policy is different and company and state law will dictate some things. I found a very good site to help with answers.

[www.disabilityinsuranceforums.com]

You can ask your questions in there and these folks will help find you the best answer. They will also give you suggestions on how to fix the problem correctly if you need to. Always tell them what state you are living in as state laws can be different from state to state.

At the time my PHD took out the policy he had no reason to believe he was HD positive. I am currently trying to do SSDI, LTD and VA all at the same time and soon will not have any hair left. Getting this done before we end up in the poor house has been my full time job for a few months now.

I would suggest not getting tested (or not through your health insurance company) unless you have symptoms that are preventing you from working right now. You will not get disability (private or SSDI) unless your symptoms are disabling you. HDAC has a great article on preparing for disability and when to tell your employer about HD.

Good luck!
Chris

Thanks for the welcomes and advice. I really appreciate finding a community I can talk to and learn from.

I will be testing anonymously and paying for it myself. I don't have symptoms that are keeping me from working, I'm just trying to be prepared. As I've read, prepare for the worst, but hope for the best. I became concerned and started thinking about my policy and the questions, etc. after reading about some of the problems that others have run into with being denied and such.

I got the policy for peace of mind and now I'm worried I won't know if I'll receive it when and if the time comes that I need it. Just really worries me with what I remembered about the questionnaire and what's in my med. records.

Sorry that iv no advice, just wanted 2 say hi and welcome!

I noticed your said you told your "old doctor" your father had committed suicide.
I know when my hubby applied for his short term disability the insurance company only requested his current dr. complete the form and requested his records, not any previous dr.'s we never listed.

Great point LizzieAnn...we haven't been asked for any prior Dr.'s notes either. Only current ones.

I doubt any company has the resources to go back and look at medical records more then a couple of years old.

You can request your medical records, and if you have a good doctor, you can remove some stuff.

I did

I asked for the file I had that had tracked me over the last few years through two doctors. One reference I didn't like I Crumbled up and threw away. Good bye.

Since you are so young, you need to get on a personal basis with your doctor and go over the file. Ask him to see it. They usually bring the thing to the office with them.

Tell him you don't want them recorded.

I've heard that for LTC insurance there's a certain window of time that they can deny the policy.
I tested for the gene, and have not kept it secret , but am still considering signing up for a policy, since I'm only 27 and would get cheaper rates now. The man from the insurance company said 2 years, so as long as nobody from the policy Googled me during that time, I'd be set.
Maybe it's similar for disability insurance, I would suggest to read through the policy again.

I looked over my policy and in it there are numerous references to 2 yrs. For instance, any undisclosed symptoms within 2 yrs. of obtaining policy and so forth. So maybe two years is all they go back like some of you are saying.

My old dr. refers to when I lived on the west coast. Those are the med. records i'm referring to and have copies of them. Copies only. I called and asked for my records after moving from the west coast and copies are what I received. I just feel like they are my records and I should have the originals.

Just makes me nervous after realizing this the other day. Thought about calling my agent and talking to him about it, but I'm a bit concerned to do that.

Chris - I'm sorry to hear about the struggles you're having and I hope things get resolved soon for you guys.

I've received disability benifits. I continue to receive them.

It's quite true that the paperwork is a pain in the butt. But once you've achieved that - it's well worth it.

I picked the brains of several on this site (mostly Dave) - and it was invaluable!


I would NOT volunteer any suicide information! Say "no!" Given the medical information protection laws - it can take the insurers more time and effort to find such information than it's worth for them.

Make them work for it. Don't volunteer it!

jl

SSDI benefits will INDEED be subtracted from your private insurance LTD benefits - but in no way will they be LESS!

Whatever you qualified for in LTD benefits will remain the same. They just go into a process of working out who pays for how much. Your disability check will remain the same.

jl

Hi Chris-
I went through all this back in 2002
yes the LTD is reduced by the amount of the SS you recieve but there was a 10% difference cap meaning even if it is a complete offset the LTD co was still responsible to cover 10% on top of any SS.

I don't recall that being part of the plan I think it was SS or national insurance guidelines I would check to see if that is still the case.


good luck

Jamie

I don't think SS has to prove anything.

In my case, it was my STD provider that demanded that I let them know if SSDI benefits had begun. It was a condition of my coverage that either I do so - or I'd lose my STD bennies, after a period of time.

The reason they do this is that THEY'RE the ones who stand to lose, if they continue to pay you benefits you're receiving from elsewhere.

Here's how it worked for me. Short Term Disability kicked in right away. Long Term Disability right after that.

After about 6 months, when SSDI kicked in - my LTD was REDUCED by that amount - but not eliminated. You have to check your own disability policy. Since they are issued by private insurance providers - they can differ.

jl



Edited 1 time(s). Last edit at 01/21/2009 08:03PM by jl.

Hi bms,

Welcome to the forum. I just wanted to advise that you are not alone, I am in a similar situation with regards to the medical records and many here are too. I am a 38yr old male and at risk.

Everyone here is friendly and willing to listen and help. They gave me great information about testing, insurance, life in general and more importantly support when I needed it.

Suggestions which were made to me and made sense were

1. change doc's: A fresh start with a new doc, records and mindset.

2. Get your insurance matters straight before any sort of testing, STD, LTD, LTC, DI etc....

3. Suspend the testing process and or do it anonomously when the time comes.

I hope you find this helpful and wish you all the best with your future decision.

>>LP

hi lp and thanks for the kind words from you as well as the others. I have found everyone to be really friendly and I'm really glad I found this forum.
Sometimes it gets overwhelming thinking about all this, but it's a part of my life as with all the others on this board.
I have the disability insurance in place I just fear them finding something in my med. history that they could use against me to deny payments if I ever do need it. I've heard the stories.
Yes I am finding this helpful and it's just good to know I'm not alone.

The only way disability insurance can deny benefits, bms, is if they specifically exclude HD from your coverage.

Or if you're making a claim for a disability that you received treatment or consultation for within the period of time mentioned in the "pre-existing condition" clause.

You simply need to read the policy!

jl

bms...I have been doing the same thing with hubby's disability. He has struggled with depression issues for quite some time before we knew he was HD positive.

My biggest suggestion to everyone is put aside 6 months to a years worth of money to pay the bills. We were trying to do this when we got blindsided and had to go on short term disability or risk hubby losing his job. Even though you might get short term disability, it is usually only a portion of your base pay. Doesn't figure in bonuses or things like that.

If I could go back and do something different, I would have (1) kept credit cards to the bare minimum (2) put as much as possible into a savings account that is not easily accessable (3) paid off cars and installment loans faster.Get your financial ducks in order as well as your medical issues.

I've had no choice but to be very blunt with his Dr's regarding PHD's applications for SSDI, LTD and VA. I've had to come right to the point and tell them that if they have any language regarding pre-exsisting conditions, then they need to correct it BEFORE the records are summoned.

If your still working and able, plan ahead now. You'll save yourself a whole lot of headaches later.
Good luck.

Yes, my STD was 66% of my last base pay. LTD took effect right after, and was 60%.

I had too had to make sure I had my financial "ducks in a row" - before I made that leap. I'm clad I did that.

That said - let me say something about medical records!

They can "summon" whatever the hell they want! But you have control over what you GIVE them!

It's called the federal HIPAA "medical privacy law".

jl