When to fill for disability?

Dolores193

This is my first post, hopefully will get some advice from those who have been thru what I am about to going thru. My DH was diagnosed 2 years ago with early on set Alzheimer’s . He is now 63 and still working as a computer programmer. He was told today by his boss in a very kind way that he has 2 months to speed up, switch departments or they will terminate him. Don’t think he can speed up and currently there are no other jobs available that he could do. He has been with the company for 20 years. My question is when do we tell his boss about his diagnosis? So far only a select few family members are aware of his diagnosis. What options do we have ? Do we start applying for SS disability now ? This is so overwhelming. Have no idea how to proceed. Any tips would be appreciated.

Jeanne C.

Hi Dolores - sorry that you and your husband are going through this. I'm not an expert, but I don't think eligibility for SSDI kicks in until after a year. It's possible that your husband's regular longterm disability insurance may be a possibility. I strongly recommend that you talk with a certified eldercare attorney. You're going to need to move quickly as your husband's company has started a timer. The Alzheimer's Association website has a resource search that may help: https://www.communityresourcefinder.org/

This forum is a wonderful source of information and support. I'm newish here and everyone has been so helpful.

sandwichone123

My dh was diagnosed and filed for early retirement within days of each other, and I filed for disability on his behalf the next day.

towhee

Hi Delores193, I have not been through this myself, but until others chime in I will repeat some advice I have read on the forum.

• don't tell his boss until you get more info and have a plan
• you want to talk immediately to an employment lawyer and/or a certified elder care attorney (nelf.org)
• you want to find out if his company has a disability program/insurance
• you want to use up as much of his sick leave as possible
• Medicare will not start until two years after his date of approval so keeping his health insurance is critical
• You can apply for SS Disability when your LO is on company disability or sick leave I think, but not while he is still working

This is a link to a previous discussion, read carefully about when SSecurity accepts a diagnosis SS Disability — ALZConnected

storycrafter

My husband was told a very similar thing only he was 58 years old. He was unable to focus enough to do his highly technical job. He went on sick leave, then long term sick leave/disability, and then early retirement. It took seven years for him to get a firm diagnosis of FTD (Fronto Temporal Dementia). We had to dip into our retirement savings several years early. Only with the specific diagnosis, did Social Security finally accept his disability claim.

Fortunately, your case is different. With the specific diagnosis of early Alz your husband should be able to apply for Social Security Disability right away and relatively quickly be approved to receive his maximum benefits. If he can go on sick leave now that will give you time to start the process of applying for SSD.

I'm sorry you are dealing with this. It's a very difficult time. You'll find much support and wisdom here. You're certainly not alone with this. Keep reaching out until you find all the support you need.

Iris L.

Short term sick leave usually requires a doctor's signature. Regular long term disability and SSDI require a lot of documentation and takes time. Taking sick leave will preserve his employee benefits until everything is sorted out and in order. Discuss with appropriate legal specialists ASAP.

[Deleted User]

The user and all related content has been deleted.

Dolores193

Wow I am blown away by the good tips I have recieved. Did not even think about the long term disability from his job.. We saw an elderlaw attorney and did all the usualy things right after he got diagnosed... set up a trust , got things out of his name and updated POA and wills. I will reach out to them Monday to see if they can assist with the short and long term disability from his job.

We have been seeing a neurologist so have medical documents to prove his diagnosis and he has beenon several meds, in a clinical trial and is in a research study right now... Do you think info will help him qualify for company provided disability ?

Will look at the annual enrollement info this weekend as he has short and long term disability thru work and is fully vested in his 401k. Yes this is definelty a race to preserve his assests that he has worked for.

SO grateful for the advice..... he was going to try to find another job inside the company but I think while he has all these benefits we need to get the disability ball rolling to preserve them.

Anything else I should be doing?

[Deleted User]

The user and all related content has been deleted.

Iris L.

After all of the legal/employment/disability affairs have been settled, consider your bucket lists. Do them now! Search for and read the travel threads for guidelines. Also, read the driving threads.

Denise1847

I was in HR for many years. Under no circumstances should he tell his boss or anyone else. If they know, he will not have a chance at another job in the company. They will say he is unable to perform the job. You may need to seek some help from the doctor for a letter or documentation that doesn't reveal the diagnosis, but supports the need for the leave etc. HR is not suppose to see/know about diagnosis due to HIPPA. Have him use his sick leave (it is probably now PTO), then file for short-term disability, then long-term disability.

I am so very sorry and I hope I have been a little bit of help.

Crushed

you file for disability ASAP no reason at all to delay

Dolores193

Thanks for the tips .. we will reach out to the elder law attorney we used to set up the trust first thing Monday and see if they can help us navigate this situation since they already know our circumstances.

yes Victoria 2020 it was a hard conversation but I think he is onboard with applying for disability… don’t want to wait and him get fired and we lose all his benefits. I did remove his name from the DPOA. That was a rough day, but we got it done.

Thanks Iris L that is a great suggestion.. we will definitely have more time to do some traveling once he gets disability going. Hopefully we can make the most of the time we have left.

Battlebuddy

My husband was also a computer programmer. We knew something was wrong but didn’t know what. My husband had seen a neurologist and they had done an MRI. It had shown shrinkage in the brain.

It got confusing , but when my husband missed a meeting I got scared he would get fired, so I made him an appointment with his GP and this time went with him. He came from work to the appointment . I asked her what was going on with his health, and she said “ this could be early dementia” He was 52.

I told her that I was worried about him getting fired and she said “ oh would you like me to put him on Short term disability right now while we figure this out?” That was it. He never went back to work from that appointment. HR takes care of everything. They notify employer and to this day his company never learned what he was pulled for. So you don’t need the elder law attorney to start this process , just the doctor.

I have more to tell you but it’s midnight. I would have him call in sick Monday and talk to the doctors about short term disability

[Deleted User]

The user and all related content has been deleted.

Crushed

Alzheimers is a scheduled compassionate disease and gets you SS disability right away .

[Deleted User]

The user and all related content has been deleted.

Heartbroken17

My best advice is to start the process right away. My husband retired in December of 2021 and we are still waiting for his first SS disability check. There is a lot of paperwork but for me the biggest holdup is having a designated payee assigned. I've been fighting with that since November of last year. He was "approved" for disability by SS but they wouldn't issue a check until the designated payee was set. The person assigned to handle my husband's case wouldn't respond - after at least a dozen voicemails (no email address and she never answers her phone.) Her supervisor didn't respond to a message either. In March, someone from SS called me and said we could do the whole thing over the phone and she would set up an appointment. The appointment is for this coming Friday. Hopefully it will finally be over with soon.

Hellogoodby

Some good advice here, but some possibly dangerous advice. I was a disability attorney for over 40 years. You need to act as if the company’s disability plans and SSA will look for every possible excuse to deny the claim, and working after diagnosis is a strong basis for a denial. It isn’t always true that they will bend over backwards to deny the claim, but it is often true, and it never hurts to be prepared for the worst.

You will need NEW evidence after he stops working to document his claim. I strongly recommend an neuropsychological exam after he stops working. And I recommend not one, but two lawyers in addition to the elder law attorney. You need a specialist in Social Security disability benefits (see NOSSCR.ORG), and you also need a specialist in long-term disability (if they have a professional association, I don’t know of it, but they are not hard to find). The Social Security disability specialist can recommend an LTD specialist.

danapuppy

Not to take away from Hellogoodby's experience. Sign up for disability with SSA immediately. You will need the current diagnosis documents that your physician will provide. When my wife was diagnosed the SSA processed and approved her eligibility. Without us having to involve legal counsel. I was able to complete the request myself.

In all fairness, consider working with the employer. Recognize that a job needs to be done and if performance degradation is impeding that, it is unfair to the employer.

A large problem for us was health insurance until Medicare kicks in at 65. Good luck.

[Deleted User]

The user and all related content has been deleted.

Iris L.

My personal experience: I had to threaten to sue my employer to obtain long term disability benefits. They had kept putting me off by sending form letters asking for more information, for years. After the disability lawyer was involved, the benefits were awarded. I received a lump sum of $170,000, of which $70,000 went to the lawyer. I had to pay another large amount in taxes, although I should not have had to pay any because it was an insurance settlement. Out of the original amount, I was left with about $45,000.

My problem was that due to being ill, I was not able to understand exactly what was happening. The lawyer did not have to file legal papers in court, only wrote two letters, which they showed me. Then the insurance company complied. I think I should have paid a small sum, perhaps about $5,000. But that's what happens when you are ill and on your own.

ladypeewee

my husband Peewee worked at his job for 11 years when he quit. I knew something was wrong for awhile before that, I took him to his GP and then he sent Peewee to a neurologist, where they put Peewee through several test to which the outcome was early onset Alzheimer's disease. Peewee was 56 we filed for his disability and got his first check 4 months later. Because he was diagnosed with Alzheimer's disease he was pushed to the top of the list and he received full retirement benefits. We did use a disability lawyer and had to pay a small portion of his back pay to the lawyer. We later learned that we would have gotten Peewee's disability without the lawyer, but was glad we did use him.

I hope you get the answers your looking for.

SunshineSam

Hi there! I wish my experience were like LadyPeewee but it could have been that we got caught up in the pandemic, but our experience with applying was three years in the making. We also live in the DC metro area where there are a lot of applicants. My DH was diagnosed at 57 with EOA (MRI and PET). It was recommended that he leave his job immediately. The stress was making it worse. He was a Federal Employee for 17 years with a high-security clearance (just short of his 20 yrs). We had two kids in college, and I had recently lost my job of 25 years - believe me, I did NOT want him to quit, but it was the right thing for him to do. We told his Director, and they immediately started his transition to Disability Retirement. He took medical leave while we waited for his Fed Employer to approve disability, which took 7 months. During that time, he was required to apply for SSD due to being a Federal Employee. One very important thing I learned by applying for SSD/SSDI is you can not be "receiving a paycheck while working." Our claim was initially denied after one year because the Fed Gov. still employed him. I challenged the decision myself, did not use a lawyer, and proved to them that he was not taking pay but using his leave. After that, his application went into the SS abyss! Due to the increased number of SSD applicants (due to COVID), they were extremely slow and questioned his diagnosis. They required us to see one of their doctors to determine if he actually had the disease, even though we had an official Dr. diagnosis and tests done. It took their doctor all but 5 minutes to realize my DH has moderate Alz (it could have also been all the scratches on his face from all the picking he does or perhaps the jibberish that comes out when talking). Let's just say SS called 7 days later, just last week, to say his condition was fully favorable and had been approved for SSD. Three years of back pay (and they will tax it as well). The SSD decision process took us three years (2020-2023). The current law says the SS Administration has to expedite any SSD claims when the applicant has Alzheimer's. Since ours was during COVID, I'm sure they just forgot about that. I'm telling you this because you must be ready for a long process - stay strong and get smart. Do your research about SSD and your choices. You may need to have Medicare, which is a good reason to claim SSD. I highly recommend hiring or finding someone who can help you navigate the process. I navigated through, but it was a rough and stressful ride. There was a lot of lingoes I didn't understand (still trying, too - now I'm hiring Estate lawyers to get through that process). It's long and unrelenting, but SSD will help you both in the long run. Good luck with it all. Reach out with any questions. We are in this struggle together!

Crushed

Note DW was pre covid

receiving a paycheck while working." Our claim was initially denied after one year because the Fed Gov. still employed him. I challenged the decision myself, did not use a lawyer, and proved to them that he was not taking pay but using his leave.

I won DWs Federal leave /soical security case on the same point. so well done The LAW is that you cannot be working not that you cannot be getting paid accrued leave.

It was important for DW since she had a year plus of leave both sick and annual She was a "vital" employee so not subject to limits on annual leave accumulation. she had also received a big promotion and I got 33 months of her higher salary into her FERS pension.

The SS "doctor" is actually an occupational specialist who confirms the inabiltiy to work

I then had to sue OPM on the age 62 redetermination of pension issue I won that one too.

PlentyQuiet

I think our experience was atypical going by the comments. DH was diagnosed 11/2021 after a spinal tap. Applied for SSDI 11/17/21. Approved and back pay sent by end of December 2021. Possibly it went so quickly because the spinal tap was a definitive diagnosis?

DH was considered disabled 1/2021(when he left his job) and so he is able to start Medicare 6/1/2023. After 2 years on disability you qualify for medicare. This has been a lifesaver