Waiting 5mo for SSD ?!?

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OlgaS

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My husband has not officially applied for SSD yet but here's what we were told. I personally think this is RIDICULOUS and want to know if there is any way to get around this.
When we met with the social worker from the ALS Association he told us that because he has ALS he will automatically be qualified for SSD (his ALS is at the point where he is no longer able to perform his job) but that there is a 5 MONTH waiting period before he starts receiving any SSD benefits.
How on earth do they expect people to live for 5 months ?

Because of this we are having to move cross crounty to live with my parents until he starts receiving his benefits.

Is there really no way around this waiting period for ALS patients ?

The only suggestions they had were to take out a loan or to do a donation/fund raiser from family/friends etc....

I'm just really wondering how people get by for 5 months with no income.
Any suggestions appreciated...Thank you !
 

Cassandra

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Olga,

I'm so sorry about your husband.

I agree, the 5 month wait is insane. Until fairly recently, it was TWO YEARS. So, this is better. But that's very little comfort when you're looking at 5 months with no income. Without knowing more about your situation...will you be working? do you have children? insurance? COBRA?...I can only suggest that you immediately apply for SSI/Medicaid when you reach your parent's home. Immediately.

SSI payments are laughably small, but Medicaid is crucial. You'll want to have it for the duration. If you plan to return to Oregon, you'll need to reapply for those programs there...as they are administered by the individual states. You know, it couldn't hurt to call the SS office where you're moving and try to reach a caseworker who has handled ALS cases. Explain your situation and find out what information you'll need to bring with you when applying...to speed the process along. Will there be an ALS clinic nearby where you're moving? If so, call them for guidance.

Fundraisers can be problematic...at least for SSI/Medicaid. If one is organized, consult with someone in Elder Law about setting up a trust. You absolutely cannot have direct access to monies raised. It will count as income. You could lose SSI and, with it, Medicaid. Even with a trust, there are restrictions on what can be paid for (out of the trust), without THAT counting as income. Again, you DO NOT want to risk losing Medicaid.

Sounds like a lot of hoops to jump through, I know. There are and, unfortunately, you've only just started jumping. You said you are moving cross-country. Do you mind saying which state? Chances are, someone here has familiarity with the programs and application process there. I've been "lurking" on this site for months. Helpful, caring folks and tons of good information. I'm sure they can correct any misinformation I've given you. Best wishes on your move.

Cassandra
 

indigosd

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Olga, Cassandra hit the nail on the head. Strengthen your leg muscles because it seems like enless jumping through hoops! We immediately applied for SSDI. Yes, it is a regulation that everyone has to endure the 5-6months waiting period. That waiting period is to make sure that YOU CAN NOT RETURN TO WORK! OMG! Now, the way you CAN get around that is this, make sure that you have the date he was unable to work as far back as possible! I didn't discover that little pearl until it was too late for us. I even did the appeal process to no avail. We are living on a hope and a prayer. SSI [Supplemental Security Income] is not SSDI [Social Security Disability Income[?] or Insurance] It is ghastly to apply for SSI and Medicaid in my opinion and it is regulated by state income guidelines. You literally can have NOTHING to qualify-at least in my state of residence. IF he has a ALS diagnosed, I would suggest that you apply asap. He will have Medicare A & B in five months-at least it is something. Does he have short term disability through his job? That is what we are doing so that we don't starve. Hope this helps. There is so much great information and support in this forum. You just need to search. Just know that you are not alone. :]
 

OlgaS

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Thank you for your replies. That is a very good idea about contacting the Florida (where we are moving to) SS Office before we get there so that we can make sure we bring everything we will need.
We have met with an Elder Law Attorney and from what I understood , as far as fund-raising, as long as the account is not under my husband's name/my name it should not be a problem. We are opening a donation account in our child's name and the attorney said that will not be looked when we are applying for SSD/SSI. Is that correct ?

Here's another questions, we were told by the attorney to pretty much not even bother with SSI because we will not qualify.
He said that we need to apply for Mediaid right away but that we should not plan on getting anything for SSI, only SSD.
It is a complete pain that we will have to apply for Medicaid in Florida and then re-apply when we get back to Oregon, but right now, honestly that is the only option we have.
We simply can not afford to live in Oregon on my income alone and be able to pay bills, childcare, insurance etc....
Unfortunatly he does not have short/long term disability from his work.
We are going to put our child & husband on COBRA through his work, but even then that's apx 600 a month.

Yeah, we are just getting started and we're already overwhelmed by everything....sounds like we'd better prepare ourselves ....not going to be a quick and easy process !
 

indigosd

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Olga, Is your husband diagnosed with ALS? When and UMN, LMN or Bulbar? You mention a child-what is the age? YOU WILL NOT QUALIFY FOR MEDICAID! I think that you are confusing Medicare and Medicaid-2 different beasts. He will AUTOMATICALLY be enrolled in Medicare Part A & B when you apply for SSDI. I am confused about going to Florida and then returning to Oregon...Elder Lawyer? If you have no money how can you move across the USA? Will there be a ALS clinic where you are going? I'd love your Cobra! Our's went from $390 copay/month to $1400/month if we want to continue with COBRA! My son and I will have no health insurance :[ We all can identify with the outrage and the overwhelming feelings.
 

Mahealani

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I just went through the application process - they qualified me immediately over the phone even, buy there is no way around the 5 months - frustrating!

In addition you can't back date your disabled date if you made more than $680 PER month during those months.

Mahea
 

shannon1966

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Contact your congress person's office, explain your situation and ask for their assistance in expiditing your husband's case. This works in hardship cases.
 

Cassandra

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Olga,

I don't suppose there's the remotest chance your parents live in Pinellas County? We found an angel at the SS office here, while making some "fact finding" inquiries. (Our son and his partner were, for a time, thinking about moving here...though they ultimately decided to stay in North Carolina.) Anyway, I can give you his name.

I believe the Tampa Bay ALS Chapter now covers the entire state. Go to their website to get the name of the "Care Coordinator & Facilitator" for your parents' county. You'll likely need to make contact and wait for them to get back to you, as they are apparently swamped. Not necessarily a bad thing though. Send an email with a thorough explanation of your situation and an exhaustive list of questions. That'll provide a starting point for the conversation.

When will you be moving?

Cassie
 

Cassandra

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Olga...one more suggestion. (You're going to fully regret having ever caught my attention.) My understanding is that you must be a Florida resident before applying for Medicaid. However, there's nothing to prohibit you from getting the requisite paperwork to fill out before coming.

If you've recently applied for SSDI...and have that info complied/close to hand...I'd imagine much of what Florida requires would be duplicative. You can then hit the ground running when you get here...instead of trying to round up what you'll need in the middle of unpacking from the move.

Just a thought.:D
 

brendapals

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Olga-

Wanted you to know I'm praying all works out for you and your family! I agree that the 5 month waiting period is painful,to say the least! I was far too stubborn to quit work right after my diagnosis...so of course I made "too much money" over the 6 months after diagnosed. So I worked the maximum amt I could to stay in their guidelines.

It was not an easy task, but faith will get you thru it. And now that I await my 3rd ssd check, I find it amusiing what I used to worry about! Now I'm more thankful for my family, our home and food!

Hang in there-
brenda
 

t34gib

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I was informed today that my job requires me to speak and since my speech has been reduced to blubering, I will be losing my job. I am going down to 32 hours and maybe will be layed off and have to go on unemployment. Of course, I will look for work but I can't help it if they will not hire me. Maybe I won't, I don't know what to do. One thing about Cobra. I do this at work so I know it is true. The government is now reimbursing the employer for I think 70-90 percent of the premium if the unemployed worker is paying the 10-30% I think it is 10% , I will check the paperwork tomorrow. So if you go on Cobra, it will be cheper for you. I think it is if you went on after May or June of this year. I will check. I don't know when to apply for SS disability. I have made too much money this year, so what is anyones suggestions? I really need the money to pay the house payment. Husband is retired. Help.
Thanks, NancyS
 

t34gib

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Also, how much can I earn and still get it?
NancyS
 

tmasters

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Does you have Short Term disability insurance through your employer or the state of Florida?

Perhaps your husband should un-retire. Better than losing the house. Let him choose.

-Tom
 

sadiemae

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You can have 800 dollars a month in income while waiting out the 5 month waiting period. This is called SGA. Unemployment income is not considered SGA, but it is really iffy collecting unemployment while filing for SSDI. On unemployment you are stating that you are able to work, and filing for disability you are stating you are not able to work. Lori
 

chefdeborah

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Lori...you need to check on that! I just went through 2 1/2 hours at the Social Security office and I got SSD in 2001 for another problem. They kept telling me I could make $800 a month while on SSD. When I got the letter, I couldn't figure it out so I went to the office. and waited! While there, I met a nice young lady who helped me figure out my paperwork. She told me that you can make up to $800 a month, but it is counted over a period of nine months! If you make that much in a period of nine months, you might lose it! I didn't know that, so I was working by writing for a paper and doing medical transcription. I just barely squeaked by, by the grace of God, and the young lady that helped write everything down. I was totally dumbfounded about all the paperwork they shoved at me....thank heaven's she helped me!

deborah
 
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