SSDI for Early Onset

Lgb35

for those of us who are still working while on this journey and your significant other has had to stop working and applied for SSDI. I have a couple questions. At what point did your loved one stop working? It is my understanding this disease is considered a compassionate allowance under SSDI. Since we are officially diagnosed with MCI is that enough or do we need to have the official Alzheimer’s or FTD? Also I know other diseases like ALS which is under the compassionate allowance has had the 5 month waiting period waived. Do any of you know if it is also waived in this disease too?

Dio

Here's the webpage on SSA all about Compassionate Allowance, and which has a link to the list of Compassionate Allowance conditions: https://www.ssa.gov/compassionateallowances/index.htm

DH stopped working when he was incapable of performing work duties. I'm not sure about MCI, but you do need a doctor's diagnosis clearly stating that it's Early Onset of Dementia, regardless of which type, and he must not be working any more. I don't know about the "5-month" wait period, but typically SSDI approval process is very long. Under compassionate allowance, if application is accepted, will fast track to approval. Ours got approved in record time, 2 months from application submission. We went through a group called Allsup. No charge upfront. Will deduct from first lump sum back pay from SSA (which SSA handles automatically) with a cap of $6k at the time. If you're applying yourself, just make sure you dot the i's and cross the t's. Good luck.

sandwichone123

My spouse was employed well into stage 5, but because he was working from home at the time I know he did not do one effective moment of work for two months while I was catching on and racing to catch up before he got fired. When I applied him for disability he had a solid Alzheimer's diagnosis and it took the full five months, almost to the day.

MelissaNH

My husband was diagnosed in late April of this year. I will share my experience with you and I hope it helps. When this first happened, I got a lot of conflicting information online and the first few people I spoke with at SSDI (the 800 number and a representative at our local walk-in office) were very unhelpful. I waited an hour to see someone in person and well over an hour to get someone on the 800 number only to be told I needed an appointment and would have to wait 10 days for the earliest appointment. They could not give me any further information or answer any of my questions. I had questions about how the "Compassionate Allowance" might work/help and they couldn't/wouldn't tell me anything. This was, by far, the most frustrating part - getting accurate information and personal assistance. Perhaps I just got unlucky - who knows! So here is what I learned from that experience, whether you call or walk-in (at least here in NH) all they can do for you is make an appointment to have someone from SSDI assist you with the application. You can do it online, but I am glad I did not go that route because I had started it online and it was with a representative in Boston, MA and just sat there. I ended up making an appointment to have a representative call me and ten days later someone called me from our local office in NH and we spent about three hours on the phone. The next day I gathered all of his medical documents and drove them to the local office. I'm not sure if it helped, but I did it anyway. About a week after that call, I checked the SSDI website and saw that our application had moved to the next step (there are 5) and that was Medical Review in our state office. This is where they go over all of the medical records and their doctors determine if the person is disabled. I was told that even though I had sent the records, they still had to get them from the healthcare offices directly. We passed the review in a week and I was told it was because we had had a recent neuropsych test and that that allowed us to pass the medical review so quickly. The neuropsych doctor diagnosed him with Major Neurocognitive Disorder and the neurologist's diagnosis, based off the neuropsych test and MRI/MRA's, was FTD/Picks' with vascular contributing. As of right now, the date my husband is being considered disabled is 4/18. On 5/31 it went back to the local office for a final review and determination (step 4) and it says online that this process could take 2-4 weeks. It's been about two weeks since I've heard from anyone. The rep from our local office told me that no matter what, there is a 5 month "hold back". So if he gets approved for the 4/18 date, we won't receive payment until five months later. The first payment would not include 5 months of "back pay" like I thought. If the process took longer than five months from the date of disability, which it does for many disability cases, that's where the "back pay" would come into play. It sounds like we will know the answer well before then and will just have to wait the five months if all goes well with the non-medical review. I'm not sure why it wouldn't, but who knows.

While our application was in the Medical Review process, we had a PET scan which came back and showed that my DH's dementia is likely vascular contributing as opposed to typical FTD. I panicked because I couldn't find anything on the Compassionate List about vascular dementia, specifically. I did, however, finally find a diagnosis they have on there - Mixed Dementia - and it sounds like he would fall under that. But, again, who knows. I wanted to mention that because I'm not sure where MCI falls, but I think, if anything, it might be there if you don't know the etiology of the disease. FTD/Pick's and Early-Onset Alzheimer's were the only ones that jumped out at me until I found the Mixed Dementia diagnosis. Maybe someone else will have more info on MCI specifically. From my experience, the Compassionate Allowance does expedite things, but passing the medical review is the process that could slow things down if all the testing isn't already in place. I forgot to mention that when it went to the Medical Review process, it originally said online it was expected to take 6 months! I was really nervous when I saw that and then shocked when it only took a week! Something finally went right! Anyway… I can keep you posted if this has been helpful. I wish you lots of good luck with this process. We are desperate for this money as we are in financial ruin due to the disease and I've been home since our kids were born. My husband is only 56 :( Sorry this is so long. I just know experiences with SSDI have been so different and I wanted to be as specific as I could about our case.

trottingalong

https://alzconnected.org/discussion/comment/212550#Comment_212550

I remember your story (the first part). I’m happy to see the ball got rolling after all your hard work and the frustrations you had to endure. I’m hoping you do get the back pay, that in itself would be like a bonus.

MelissaNH

All that and I forgot to answer the question about when he stopped working! DH was let go from his 8th job in four years on 4/18/24. Prior to all the job losses, he was a high level executive with successful work history. He had been with the same company for 15 years before his position was terminated due to downsizing and he was let go. It had nothing to do with job performance - just really bad timing. I often wonder if he would have been able to continue on there for several more years since everything was familiar, but we'll never know. Early-onset dementia is so confusing!

MelissaNH

https://alzconnected.org/discussion/comment/212556#Comment_212556

Thank you so much, ((( @trottingalong ))). This forum was so supportive and I am so grateful :)

rplourde50

we got the SSDI for my wife. It was a process. Took about six or seven months. They will come back to you repeatedly with additional requests for information but if the diagnosis is solid it should come through. Be persistent!

Lgb35

thank you all for your insight. It is one more layer to the horrid disease when you’re still working. I am 54 and work from home and thankfully I carry our medical insurance. DH is 60 and works as a building material salesman. He does not have the benefit of disability leave through work or any accommodations. It’s either you work normally or not at all. I am honestly very nervous about dropping down to just my income but he feels the time is very close