Disability Question

[shellshell]

Hi to all! I have a question, my dad had to quit working in January 2007 due to limb onset of ALS (he was diagnosed in February 2007). He is a Veteran with a Purple Heart and has been unable to get any assistance from the Veterans affairs office. We also applied for his disability in January 2007, luckly he was approved; however, he will not receive his first check until August 2007, that's right AUGUST! :evil:

We put in for an expediate for his disability (which was also denied) because my mom's income is the only thing they have coming in right now (and she doesn't make much at all) so my husband and I are having to pay their house payment and my dad's cobra insurance, which I will do whatever is needed to help them but , needless to say, we along with my parents are behind on everything because in February my husband lost HIS job (he's finally working now but we are still catching up!).

It is so hard dealing with this disease along with the financial woes of it all too, I was curious how long it took those of you who are receiving disabilty to obtain it. I feel like my dad's health is declining at a faster rate because of the stress of the money issues and that makes me so upset because it's not like he's not asking for anything he isn't entitled to, especially with the veteran's office!!!

I work with a WONDERFUL group of people at my job that took up about $500 for my parents, I was so humbled at their generosity, then last night my parents air conditioning went out in their home (we live in Arkansas so it's ALREADY quite warm here) and it seems like everytime something good happens something bad does too...

I am so sorry for the lengthy post, I guess I just needed to vent for a minute. I only want to make things as easy for my parents as possible. I am so used to "fixing" everything for them and it is so difficult for me to not be able to "fix" my daddy or their financial issues. I've asked them to move in with me and my husband or told them we would sell our house and move in with them to help but my daddy just won't hear of it, which I understand that my parents need their time together I just want so badly to make it all better...

Thank you all for helping me thru this. I would be losing my mind (as if I'm not :???: ) if I didn't have you all to help me thru this.

My husband and I are volunteering at a silent auction and golf tournament on May 19th here in Little Rock, AR for ALS, I told them I couldn't donate money right now but wanted to do anything I could to help! I just feel like I need to give something....

Bless you all and much much love!!!

Michelle

[vmd]

Michelle:

I'm sorry I can't help you, but I have many of the same questions you have. I am hurriedly trying to look at all the financial options I can line up in order to help my 11 year old-daughter after I am no longer here. In my business, there is a disability payment and a death benefit. Unfortunately, the longer I draw from disability the lower the death benefit. Since I am responsible for my 11 year-old's financial situation, it would be better fo me to die quicker so the death benefit would be larger!

[CindyM]

Hello everybody. I read somewhere that ALS is an automatic disability. I'll post the site as soon as I find it. Meanwhile you can find a bunch of good information on this site:
http://www.alsa.org/policy/agencies

Happy hunting! Cindy

[ltr]

Michelle - did you search disability at the search link on this site? I know this has been discussed before and I was under the impression that once diagnosed with als there was no waiting period whatsoever. This is the most horrible story, Michelle and it really saddened me to read it. Did you try calling a disability lawyer? As a disabled war veteran it certainly seems as if there is something that went wrong here. I highly suggest a lawyer. I am a firm believer in justice and that is something your family is not getting right now. Hopefully others on this forum will give some advice too, but a lawyer is needed. Good luck.

[sharona]

I am so sorry to hear about this terrible situation you are both having. VMD I know where you are coming from it's sad to even have to think your daughter would benefit more if you passed soon.
I'm sure she would rather have you here for as long as possible, you are more important than money now or in the future We have to put our trust in the Lord only he knows our destiny. My Son passed away 4 yrs ago & just when his union was starting him on disability & he could collect social security he died I know where Michelle is coming from he earned all of that & never got to collect one cent.He wasn't married so the family couldn't get any of it for the many $$ in bills. he had cancer & died 6mos after being diagnosed.He had 2 children .1 was able to get SSI until she was 18 as long she remained in school. Your daughter should be able to get Social Security if something happens .God Bless both of you & your familes .My husband is still in the process of trying to find out what is going on with him.We know it is in the neuro muscle family for the last year atleast. Sorry for the long post again God Bless.
Sharon

[tabney]

I would definitely talk to someone regarding this issue. ALS, according to the Social Security office in my state, is automatic approval and no more than a two month waiting period to receive benefits. I would think it would be the same for your state. Get an attorney would be my advice. Best of luck with the disability and all that you and your family is facing. Strong thoughts and prayers are sent your way. Toni

[CindyM]

I did a search on Arkansas for free or low-cost legal aide and a couple of sites came up. Hopefully you will find a resource near where you live. Plus I had another thought...are you registered with your local ALS chapter? Often they make things much easier. Cindy

[Frizzel]

I am so honored to be a part of this ALS forum. Just reading how all of you responded to Shell brought tears to my eyes. You are an awesome group!

[Jamiet]

Shellshell,

Were sorry this is happening, it's tough, but you will make it, we can tell you are a strong person.

You need to get him on Social Security. It's automatic for ALS, the six month waiting period is waived, so get with the SS admin ASAP. Just this year, my company, donated the money for the entire ALS assn. in Louisisana to go to Washington in two weeks to lobby the senators for the renewal of it and to get more ALS research funding.

Next, make sure your registered with the local ALS Assn. I have a good friend in the ALS assn here, i can get the closest assn info for you if you need it.

Finally, you need to meet with an associate of the MDA, they usually cover all medical bills that you cannot cover. They may pay for the cobra or something else. There is definitley money there for ALS patients, so speak to them ASAP.

The ALS Assn will probably be the most help, as far as information. I also think they provide a nurse for a few hours per week and i think here, they give you $400/ month, it's not much, but it will help.

If you need to speak to my friend, send me a private message and i will give you her phone number. WE are in Louisiana, so were your neighbors and she is about the nicest lady you have ever met.


Rgds,

Jamie

[shellshell]

I wanted to say a big thank you to all of you that replied to my post regarding my dad's disabilty. We are looking thru the phone book tonight and will be calling a disability lawyer tomorrow. You all are such a blessing to me and my family. Thank you so very much!!!!

Much Love!
Michelle :-D

[CindyM]

Michelle-this is what we like to hear! you take the bull by the horns, my friend, and go get the help your family deserves! Jamie, thanks from all of us for the great advice and put so clearly! Have a good day, everyone. I am off to the old salt mines! Cindy

[lunarruna]

Here is a link that describes that ALS is, since 2003 legislation, considered a "presumptive disability' and you can get SS starting right away...when you get this sorted out, you will be able to get retroactive payments back to when the disability started and hopefully that will help your financial problems now. You should NOT need to get a lawyer for this....read up and talk to someone at SS that knows--if you get someone onthe phone who is uninformed--hang up and call back until you get someone knowledgeable. This is a very standard thing.
http://www.alsa.org/files/cms/Resources/FYI_Presumptive%20Disability.pdf?CFID=13 23751&CFTOKEN=19175728

Beth

[shellshell]

You guys are the best! I so appreciate the quick replies on my issue at hand. I've gotten no where over the past three months with Social Security and it has been so discouraging. The help that you ALL give to us newbee's with ALS is unremarkable. I hope you receive extra blessings in your life for the generosity that you give to us all.

Thank you again,

Big Hugs!
Michelle:grin:

[paula B]

In Wisconsin als is automatic diasability,,,however there is a five month waiting period. in which case there is no paying back from first date of disability. Worked out ok for me because i had six months of short term disability from work.
Best of luck to you shell

Paulab

[liz]

Social Security Disability is a federal benefit and the same eligibility criteria apply in every state.

Liz

[CindyM]

Thanks, Liz. the whole SSI and SSDI thing is all balled up in my mind with medicare, medicaide, and a bunch of other terms. One day I am going to sort out this confusion so i will know what everybody is talking about! Cindy

[thomkat]

The Social Worker at our ALS clinic was VERY helpful in dealing with our SS office. She knew everything that they would need and prepared a letter and package for us to take with us. The letter essentially outlined the "presumptive disability" issue because she was aware that not all SS workers know about it (she said especially in smaller towns). The package included all of my husband's test results, as well as diagnosis and treatment notes. We also called the SS office and they gave us a list of other things they would need...SS numbers for us and our kids, bank account numbers, even a copy of our marriage certificate! Our process went very smoothly because we were armed and ready from the outset with everything they required.

Just another source of help from the ALS clinic!

Kathy

[liz]

I started a file of all medical reports pertaining to my diagnosis and treatment. It is depressing to read but I will have all of the documentation I need to establish presumptive eligibility ready for the day I go to apply for disability.

Liz

[Brentt]

Don't forget that when diagnosed with ALS you are automatically approved for Medicare's part A, B and D. You will need to bring this up however. Most Social Security reps. are not familiar with the amendments that cover ALS victims. You need to be very firm with them and go over their head if they don't work diligently for you on this case. You certainly don't need a vacuum cleaner sucking funds from the scrawny amount you'll receive from SS. so eighty six the idea you need a lawyer.Remember these people at SS are regular government employees so they don't receive bonuses for doing a good job it's 9:00 to 5:00 every day. Don't be patient with them as they know who Lou Gehrig was but have no idea of how devastating this disease is and just how fast it can render you useless. I would also recommend a good Durable Medical Equipment dealer in your area,s start talking to different ones to find out who really wants your business. If you fight for these services they will come to you much sooner then waiting for them to come to you. There are some very good people out there trying to help us so I won't say it's all a fight. I hope you find quick acting people in your area.

[vmd]

Does anyone know about coverage for dependents? I am concerned about my 11 year-old daughter. She is currently under my health and dental insurance plan at work. I know that with the ALS diagnosis, I will be eligible for Medicare, etc, although I can choose to stay with my work health insurance for a period of time (COBRA). What would be available for my daughter? If I stop working and she is not covered by anyone else, does this mean the only option she has is government health insurance?

[CindyM]

If you can get her on government insurance this is a good deal. She might actually have better coverage than most private plans offer.

[sharonm25]

I do not know if this may be of importance to those of you on or applying for disability because my Mom was retired and already receiving SS as well as her retirement check when diagnosed with ALS but in the state of Florida when you receive disability they take out premiums for Medicare which lowers the amount of your check. If you have a low enough income you can apply for the Qualified Medicare Beneficiary program which will pay your premiums as well as the Medicare deductable, also acts as a supplemental insurance by paying copays that the standard 80% does not pay as well as Medicare Part D premiums. In Florida, you apply for this program via the Food stamp and Medicaid office. I hope this info might be useful to some.

Sharon

[shellshell]

Thank you Sharon, any information is most certainly appreciated! Thanks for sharing your experiences with us all...

Michelle