Unread 12-12-2011, 05:42 AM #1 (permalink)
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Default Veterans with als

Gulf War, Iraq and Afghanistan veterans with ALS continue to struggle with VA care and benefits. We need help to fix critical issues now.

1. Final Rule 2900-AN60 still sits at OMB while vets are being rated at less than 100 percent.

2. The Family Caregiver Program excludes vets with ALS, and the VA has not taken simple policy changes to fix it until the law is ammended.

3. Many VA hospitals are still treating vets with ALS thru general care instead of treating them through an multi-discipline ALS clinic - a universal standard of care across the United States.
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Unread 12-12-2011, 09:16 AM #2 (permalink)
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Default Re: Veterans with als

We were lucky to have good team care and a fast rating decision, but I know you're right: some ALS vets (most?) aren't getting the care they need, deserve, and are entitled to.

Personally, it seems to me that the preponderance of PGW vets getting ALS is most likely due to something the USA was doing in secret. Whether the 1990-91 military ALS pandemic was caused by deliberate experimentation (like Project 212) or accidental exposure (like Agent Orange), either is a travesty that must be corrected.

If the Congress can send billions in aid to Pakistan, then they could certainly appropriate a billion for the VA to treat and support ALS veterans and their families.

Any ideas on how to get this done?
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Unread 12-12-2011, 11:03 AM #3 (permalink)
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Default Re: Veterans with als

If it makes you feel any better, ALL Vets with ALS struggle to get benefits and care. We got what we needed because I dogged them and did not hesitate to run up the food chain.
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Unread 12-13-2011, 01:56 AM #4 (permalink)
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Default Re: Veterans with als

Exactly, but the point is they shouldn't have to fight both ALS and the VA. I approached ALSA with the ALS multi-discipline clinic issue. Instead of supporting the idea of getting the VA to fee base or establish multi-discipline ALS clinics, ALSA stated it was up to the individual veteran to fight the VA for that type of care. As a result, I drafted a letter for people to send to their congressmen on all three issues and posted them to my Veterans with ALS facebook page and started to spread the word. Really sad that MEDICARE and TRICARE will pay for ALS clinics, but the VA won't.
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Unread 12-17-2011, 12:08 PM #5 (permalink)
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Default Re: Veterans with als

desertcat,
Would you be willing to post our ALS Treat Us Now Petition on your Vet Facebook page? Our feelings are that terminally ill patients with little to lose want access to what is available that has shown safety and efficacy as soon as possible. We believe that Phase 2 drugs showing safety and efficacy, should be made available to us through Compassionate Use Now.

Thank you
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Unread 12-20-2011, 12:14 PM #6 (permalink)
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Default Re: Veterans with als

Victory on one of my three issues. Final rule 2900-AN60 was published as VA regulation today. Specifically, the U.S. Department of Veterans Affairs published regulations that would increase from 30% to 100% the minimum disability rating automatically provided to all veterans with ALS who qualify for service connected benefits! The rating would be provided regardless of the progression of the disease or whether or not a veteran is totally disabled at the time of their evaluation.
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Unread 12-20-2011, 04:10 PM #7 (permalink)
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Default Re: Veterans with als

Desertcat6,
Got notice from my PVA rep today about this. Great news for those who will follow us. Also, note that this is effective January 19, 2012.
No matter when it is effective, it is done and on the way!

Semper Fi and Aim High!
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Unread 12-25-2011, 01:34 AM #8 (permalink)
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Default Re: Veterans with als

Our great Christmas news - we received his long awaited 100% rating on Christmas eve. I am elated.
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Unread 12-25-2011, 06:55 AM #9 (permalink)
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Default Re: Veterans with als

Wonderful news! You must be relieved. Maybe increased ratings for your husband will not be a challenge and go smoothly.
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Unread 12-26-2011, 03:42 AM #10 (permalink)
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Default Re: Veterans with als

Awesome. Did the VA give him aid and attendance too? If not, you need to contact PVA and apply now.
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Unread 12-26-2011, 07:30 AM #11 (permalink)
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Default Re: Veterans with als

Applied during the summer for A&A. One sentence on the letter reads "Entitlement to special monthly compensation is based on aid and attendance/housebound criteria being met is granted from July 22, 2011". I'm not quite sure how this all is calculated but I will be contacting the PVA anyway to thank them for their help. I already knew that my husband was more than 100% disabled - per the letter it's about 290%! All from ALS...
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Unread 12-27-2011, 10:39 AM #12 (permalink)
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Default Re: Veterans with als

Now or soon, depending upon his condition, you'll get the big bucks for the highest level of SMC. I think it was called SMC Level R2.

DO NOT DELAY IN APPLYING FOR THIS.

Good luck.
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Unread 12-28-2011, 12:38 AM #13 (permalink)
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Default Re: Veterans with als

There are two A&A compensation levels - R1 and R2. Boils down to then need for skilled medical or unskilled assistance. Skilled medical assistance can be a caregiver trained by a medical professional to perform a daily requirement such as a physical or occupational therapy range of motion routine. If you're doing this you should be getting R2. If not, get trained by a VA PT/OT specialist and apply for the increase to R2.
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