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ALS VA Disability Claims

rhondape
0 Recommendations

Hello,
I'm new here. My name is Rhonda and I'm a gulf war veteran, not having served overseas. I have 4 kids and my husband is also a veteran of the gulf war who was in Saudia Arabia. I'm 37 and was diagnosed with atypical ALS in 2001. My diagnosis was changed in 2004 to Progressive Muscular Atrophy and then in 2008 to Brachial Amyotrophic Diplegia and then in Dec 2008 back to atypical ALS with lower motor neuron dominance. I am doing pretty well, all things considered. I'm mostly affected in arms, hands, shoulders, back, neck and face. Just beginning to have cramps in legs. Anyway, have a question for any veterans here who have filed a claim that is completed. I filed mine on 9/24/08 and am still waiting. I will say, because I am already a disabled veteran due to my knees, so I filed over the phone. I didn't get my duty to assist letter until November after repeated phone calls. I have sent all information requested including medical records and a letter from my doctor. Though this was not sent until a week ago. It took me 4 weeks after my last visit to the ALS clinic in dec to get the later stating I indeed did have ALS with onset 2001 as was originally thought. My concern is not so much with the waiting time, but with how I will be rated. Can anyone who has gone through this enlighten me. I am, of course, hoping to get 100% either IU or P&T. I am already at 20%, 10% for each knee.. I have looked at the rating schedule and know the minimum for als is 30%(should be 100% min in my opinion), but I can't figure out if they will rate each affected body part or give one overall rating. Anybody know? I would also like to know what to expect at the C&P exam as soon as one is scheduled. I have contacted PVA and someone is supposed to get with me on Monday and I'm hoping that might expedite my claim just a little faster. I wont hold my breath on that, so I am content in waiting patiently. I am anxious though in how I will be rated. Thanks.
Rhonda

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ALS Pain Hospice care

25 replies

CherylW

Rhonda

Sorry to hear your news. My husband also has ALS. We filed back in 2005 and at that time our claim was denied. We have since refiled in Sept. 08, since supposedly our original claim could not be found. VA was supposed to reopen all the old claims. I have contacted a PVA and working with him. It's now going into Feb., we are still waiting. My husband's only movement now is a pinkie on his left hand so they tell me he will be 100% disability plus another ranking. My PVA is trying to find out what is going on with our claim as I write. I will say I did meet one lady on line whose claims was processed in less than 2 months - so far not the case with my husband.

I wish you luck and really feel VA has to come up with a better plan of action in deciding on these claims.

Janine

Hi there, I filed all claims on my Dad's behalf. I contacted the PVA the day the VA considered ALS a service connected disease. My claim was sent in less than a week after the change. We were lucky and began receiving benefits Dec 1st. Dad can only move one thumb a little and had a forced vital capacity of less than 20%. He was considered 100% disabled. It is my understanding that any ALS patient will be automatically considered at least 30% disabled. If you are getting nowhere w/your PVA contact I suggest calling the Washington office. The contact there will tell you who your best contact person is. I have a suspician that they are being swamped w/claims now. That may be the reason for the hold-up. Good luck to you.

CherylW

I am so glad you got your dad's disability so soon. Harry will be classified 100% disabled due to his movement of just 1 finger left, on a vent, etc. Got a letter yesterday claim is being processed. I went to the a woman who is on the House Affairs Committee for Veterans in DC- my PVA has done more than her. Her answer was it takes times - most at least 3 months. Sad part is we filed originally in 2005 and those claims were just supposed to be reopened. When I called, they couldn't find his paperwork and we had to start all over. Like I said I do know people who have gotten it in far less time. I am glad for them and will keep the faith that Harry's will be shortly.

joe

Rhonda,

There is a gentleman that we met in D.C. last May and he is the veteran’s affairs guy for ALS. I will look for his name and get it to you. He was also in the Gulf War and he knows all to well what the cost of ALS is. If nothing else go into the National ALS web page and I am sure that they will have it. My understanding is that veterans with ALS get waved for ALS.

Try this lady Alice Hill [capitalhill4@yahoo.com] or try this site too (see attachment)

Do you have a local ALS Support Group? If so find out what they can do for you. They have been a big help to me and my family. I am sure if you go into the national site it will tell you about any local Support Groups. ALSA Advocacy [advocacy@alsa-national.org]

Hope I was able to help in some way.

Joe Hrezo (iceberg)

joe

FAQ’s: New Veteran’s Administration Policy for ALS
On September 23, 2008, the Department of Veterans Affairs published new
regulations – effective immediately - establishing ALS as a service connected
disease. In light of this exciting news and the recognition that people will have
many questions about what this new policy does and does not cover, The
Advocacy Department and Patient Services Departments of The ALS Association
have developed the following list of Frequently Asked Questions and answers. We
hope this information is helpful.
We encourage veterans with ALS to contact their local ALS Association Chapter
as well as the veteran’s service organization (VSO) of their choice (e.g., Paralyzed
Veterans of America, American Legion, Disabled American Veterans) when
applying for VA benefits. These organizations can provide guidance and
assistance to veterans as they proceed through the application process.
If you have questions not answered below, please contact The ALS Association at
alsinfo@alsa-national.org or 1-800-782-4747. This document will be continually
updated and will be available via The Association’s website at www.alsa.org.

CherylW

As I said have a PVA and woman on the House Committee for Veterans Affairs - her answer to me was they waive that you have the prove ALS was service connected, your claim could still take 3-6 months. Letter dated Jan. 28 says mine is being processed. When questioning the length of time it takes, her answer is you will receive the back payments when your claim is approved. I explained that time maybe the issue with a lot of Vets with ALS but it didn't seem to make a big difference to her.

I am hoping any day now. Maybe eventually, they will speed up the process for Vets with ALS

ZenArcher

What percentage you are granted is entirely dependent on your condition, meaning how far you've progressed. Beyond the initial 30% they look or should look at neurological effects secondary to ALS. I'm working with ALSA now to try to simplify that process.

How long it will take to process your claim is entirely dependent on your VA Regional Office. Some areas have been reporting extreme wait times while others are processing quickly. 3 to 6 months is the default answer but as I said it varies greatly for each area.

rhondape

Hey everybody,
Thanks for all the replies. I did get a call from the PVA rep this morning. He told me that he had checked on my file and that the rating specialist did not see a definitive diagnosis for ALS and was getting ready to send my file out today to a hospital with an ALS specialist. Apparently the VA had lost the letter I sent from my doctor stating that I did indeed have ALS as was previously diagnosed in 2001. So I sent him a copy and he said he would take it up to the VA office as he is in the same building. He called me back a few minutes later to say the rating specialist told him she would rate me within the next 2 days! I guess I will have an exam scheduled at this point and will just hope it goes how I want it. ALS really does vary in how it affects people. I am in know way as bad off as probably most people with ALS(at this time, at least), but I'm pretty bad off compared to someone who doesn't have this disease and of course I'll get worse. I'll post back later and let yall know how it went. Thank God for PVA. I only wish I had contacted them at the beginning.

rhondape

Hi everyone,
I had my C&P exam today and I don't know what to expect now. When I walked in we sat down and the dr asked me to tell him about my "neuromuscular condition". He asked me a lot of questions about when my symptoms started and what each dr I have seen said. It was supposed to be a General Medicine exam, but it seemed to me the doctor was doing an exam to confirm my diagnosis. It was not a complete exam. He checked my arms, hands and looked at my tongue. He tested my leg strength by having me push against his hands and he checked my reflexes. Then he scheduled me for an EMG in my arms and legs. I don't mind having this painful test done to better show the level of progression. I know you can tell things from the EMG that is not noticeably obvious. I really don't know what to expect now. He said they would schedule the test within the next couple of weeks. This is why I think he is trying to confirm the diagnosis or say it is not ALS. I thought that wasn't supposed to be done at a C&P exam especially if you have already been diagnosed. And I do not believe this dr is even a neurologist. So, as you can probably tell, I'm not real happy now and a bit concerned. I guess I will just have to wait and see. I did email my PVA rep to ask is this normal procedure for ALS cases.

Chuck1106

I filed firsat in September 2008 with the VA. I got the usual runaround, and the shoulder shrug I saw in the Navy. I cannot talk, or I would have let them have it.
In January I went to PVA. They filed all the paperwork. I was rated right off the bat as 100%. I got back disability apy to Sept 2008. They are now in the process of helping me get a van to p;put my wheelchair in. They are slow and inefficient, but once they get rolling..they rock and roll.

Chuck

rhondape

I sure hope so because yesterday I got a decision on my claim that was dated the same day I had my C&P exam. They rated me at 60% for ALS. The letter said they based the decision on medical records from my neurologist I submitted with my claim. Understand now, that this decision was made without medical evidence from the C&P exam since it was done the same day and was not even finished since C&P dr scheduled me for an EMG. I have left a voice mail with my PVA rep. They scheduled me for a C&P exam and then rate me without it. The letter did not say this was an interim rating either. I got 30% for L arm, 20% for R arm, and 10% for each leg. Let me assure you there are other areas of my body affected than just my arms and legs, which was even mentioned in my medical records. I know I should have been 100% based on the rating schedules. I had applied for IU, just in case, but was denied because I homeschool my children. I guess they don't know you can homeschool while laying on a couch with heating pads all over you because of muscle pain and soreness. Anyway, I'm waiting to hear back from PVA and hoping he tells me that they rated me by mistake, and not make me wait 3 or 4 months longer for a reconsideration. None of this makes any sense to me. But we are dealing with the government so......

boblandstar

Please be aware that even with a proper diagnosis and a fair C+P your rating % is going to be based on your current disabilities. Although ALS is presumptive the base rating is only 30%. The rapid onset and unpredictable nature of ALS can be a nightmare when dealing with the slow pace of the VA and getting the rating you deserve. If I can help in any way or advise you based on my experience with the VA concerning needed equipment,and shortcuts to help you please contact me at boblandstar@att.net.

I have been fortunate in my dealings with the VA. Here is my story.

Amyotrophic Lateral Sclerosis


SEPT 23,08 FILED CLAIM WITH ASSIST OF PVA VSO.
CLAIM FILED AT MUSKOGEE OK. VARO

OCT, 27 LETTER GRANTING 30% INTERIM FOR ALS. C+P EXAM SCHEDULED FOR NOV 7.

NOV,7 C+P LASTED 30 MINUTES.

NOV,21 VSO CALLED. I HAVE BEEN GRANTED 100% P+T WITH SMC R2

THE ACTUAL COMBINED RATING ON MY APPROVAL LETTER% WAS 390% DISABLED.

I was fortunate to find a VSO whos office is in the same building as the VARO. He knows the personnel and can walk in and get answers. If the VARO is aware the claim is for a condition considered "terminal" they make every effort to expedite that claim. I live in Tahlequah OK. about 25 miles from the Muskogee VARO. I filed for SC in 05 but was denied so all the necessary paperwork was already in my file. My VSO is Lawrence Walker of the Paralized Veterans of America.

I owned a successful business but had to quit when my speech and mobility became affected. Eventually I had to sell or transfer my assets in order to qualify for SSI. But I waited too long and was denied SSDI because I hadn't worked enough "recent quarters". I had already turned my business over to my sister. I am Indian so I had to live in Cherokee public housing. I had to live on $605 a month SSI and food stamps. Oklahoma provided a home health aid 2 hours a day to cook and clean for me. The VA provided hospice care for bathing and feeding.

In Sept 08 I decided after a bad fall that I could no longer live alone and reluctantly moved into a Medicaid funded Nursing home. WHAT AN AWFUL PLACE! Thank the good lord the VA finally designated ALS as service connected! I am now SMC R2 I receive $7650 per month. I moved to a 3bd 2ba rental house and hired a live in caregiver for eves/nights and my old home aid came to work for me working days.

Oklahoma exempts me from sales and property tax. The VA gave me $11,000 to buy a wheelchair accessable van. The VA will pay $60,000 towards building me a handicapped accessible home. I chose a 1 acre lot and a house plan last month. Building begins in May. God willing I'll live to see it built.

Happy ending? No. But thank God for all the "HEROES" that worked so tirelessly to get this devastating disease on the Service Connected list. No other vet should have to walk my path.



--------------------
GOD AND THE SOLDIER WE ADORE
IN TIME OF DANGER AND NOT BEFORE
THE DANGER PASSED AND ALL THINGS RIGHTED
GOD IS FORGOTTEN, THE SOLDIER SLIGHTED.

nonoy

Hi Rhoda. I'm sorry about your news. My husband also has ALS, diagnosed in 2006. When we first filed for VA disability, we got turned down. We were told at that time that ALS was not service connected. We refiled in 2008 and was granted 30% rating. With the help of PVA and our ALS doctor we were granted 100% within 2 months after the 30%. I really believe that the letter from our doctor describing my husband's condition helped VA evaluator come up with the decision to award him 100%

Veteran

I have gone through the whole process and have been rated 100%. There are a lot of service providers that can help you, but the only one that always hit a home run for me is the Disabled American Veterans. The reason I can say this is the DAV only serves Disabled Veterans. The DAV usually has a headquarters at your state house and will set you up with a free Visit. Feel free to give them a call-- Please take a few steps back and regroup--take a good look at what you want -- don't pass the buck. There are a lot of people that will try to help you--- that is not good enough- you want firm results from someone that has 100% of VA Claim knowledge with proven results. This is all free for you -- Thanks For Your Service To Our Country

managerie99

Hi. My husband applied for VA disability benefits a year ago and eventually underwent the physical. It was decided that he wasn't fully diagnosed with ALS and was not bad off enough for benefits in any case. Supposedly the records of his testings were either lost or never there. He went through the humiliation of being accused of being an alcoholic (doesn't even take a social drink) or having a STD (that's a laugh) or exposure to asbestos. He has been living with ALS for 2 years now. It is for sure that the VA will yank you around from pillar to post with bogus accusations and proofs you must come up with. It is a crying shame that after serving 2 tours in Vietnam and serving a total of 21 years in the Navy, he has to put up with these troubles. I hope you are successful in getting your disability benefits and have better luck than us.

CherylW

Contacted a PVA in your area - they were a great help in getting my husband his benefits. Do you have a diagnosis from outside the VA as ALS - if you do you need that paperwork. Do not give up the fight. It took us from Oct. of last year (when they said they had no file on my husband yet I had two rejection letters from them on ALS) until Feb. of this year to finally approve him. Do not give up. Please continue to fight. Only thing I can say if you do win they will give you the back payments. Good Luck.

nnew08

I was diagnosed in Dec of 08 and after taking time to process this turn, I finally contacted DAV and filed my claim with the VA. I must admit I'm a bit conflicted filing for disability while still working. While my left hand is pretty much toast, I'm still able to function at a reasonable level - I know, FOR NOW.

I filed in MAR 09 with the Oakland office, then received notification in late May that I had failed to sign one of the 24 some odd pages. In early June, I refiled the form in question, signed, this time. In late Aug I got notification back that my claim was transferred to San Diego and that more info was required. Those in question here:

1. Evidence showing I had qualifying active duty service, in spite of the fact I had included my DD214 with the original filing showing USAF active duty from '72-'76.
2. Evidence showing qualifying income and net worth - This info was originally included on form 21-526 part D sections IV and V. I'm not filing for a pension but somewhere, someone indicated I should fill out part D.
3. Medical evidence I'm unable to work because of disabilities - though I indicated I'm still employed.
4. Medical evidence of my permenant inability to obtain or maintain gainful employment due to disability - I'm still working
5. Need evidence showing that ALS existed from military service to the present time. I had included the letter from my neuroligist with the diagnosis rendered on 12/18/08.

It seems much of the info provided on those 24 pages didn't seem to have made it through the administrative filter. Interesting.

My question - Even though I'm considered 30% disabled under the ALS presumption, will I have to wait until I'm "fully wheeled" and unemployed before I'm able to collect?

I'm fortunate I'm not in dire need (yet) and do feel funny claiming disability while I'm still working but was advised to get the ball rolling now so when I do need it, I won't be trying to scramble through an administrative morass typing with one finger.

I'd appreciate an informed read on my situation.

rhondape

nnew08,
welcome to the crazy world of va disability claims.
As to all the paperwork, I can't really comment much about it because I already was service connected before filing claim for ALS, so that when I filed for it, I didn't have to complete the disability application again. But, I do know that you do not need evidence to show that your ALS existed since military service because it is now a presumptive condition. All you need is medical evidence of the diagnosis. You may need to point out to them the new regulation or have your vso do that. Did you or your vso file for TDIU also? If so, that is why they are requesting evidence that you are unable to work. But, like you said, you are still working, so it will not matter, but if they ask for information, send it in. It has been my experience that if they ask for something, they will not do anything with your claim until they get it, even if they already have it. You can perhaps get your vso to find out exactly what they have received and what they need. On my duty to assist letter they asked for stuff I had already sent it, but I sent it in again anyway, so in my claim folder there are a lot of multiple copies of things. I know because I got a copy of it a month or so ago. One last thing I can tell you is to please not feel bad about applying for disability while you are working. It is perfectly fine to get VA disability and still work, even if you get 100%(of course not due to individual unemployability). Many people do. You will however not be able to get Social Security as long as you are still working, although if you apply and are not working you will be approved with just the diagnosis. I could be wrong about you still working and not able to get social security for ALS, so you would have to check that out. I have heard though that no matter what condition you have, that if you apply for Social Security are are still working when you apply, you will be denied. But, do keep on the VA claim though. Hopefully your vso will do better by you than mine did. I have been doing my claim on my own since Feb and hopefully will be awarded IU soon or even 100% schedular. With VA, though, things are not as they should be and things are not what they seem to be. Hang in there.

nnew08

Thanks, Rhondape,

First, my apology for not recognizing you and your husband's contribution in my reply. You and your family will be in my prayers. I appreciate your quick feedback. I had forgotten how many acronyms are used in government. Could you let me know what TDIU, IU and P&T stand for?
You're right about SSDI. No benefit before you're completely disabled, though they aparently have instituted a policy to fast track ALS claims. Medicare has also waived some of their restrictions for ALS sufferers like the 2 yr wait and age 65 minimum.
I'll follow your advice and keep sending what they request. Dealing with the government isn't about who's right. It's about achieving the goal.

God bless,
Norm

rhondape

Norm,
TDIU - Total Disability due to Individual Unemployability
IU-Individual Unemployability
P&T-Permanent and Total

Regarding SSDI, yes they do fast track ALS claims. Whenever you decide to stop working, go ahead and apply. Your claim should be approved within 30 days after they get all medical evidence for the diagnosis. They will process is as a Compassionate Allowance (CAL) claim. You will get medicare immediately.

Thank you for prayers and we will be praying for you as well.
rhonda

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