How to start?

[micmon]

Hi all. I am a US Army vet (Vietnam era) and was diagnosed with Bulbar onset ALS on 4/6/21. I have been told about, and have done some preliminary research on VA benefits available. How do I start? Download and fill out the claim form myself? Hire an attorney? Contact PVA or the like?

Are benefits based on financial need? I have an amount of retirement money and a Medicare Advantage Plan through my husband's retirement employer. Also, I am fortunate enough to have long-term care insurance (I've been paying Genworth for 30 years and plan to get some of that $$ back.) Will having such resources prevent me from getting help from VA. Vehicle adaptions etc.

 

[Nikki J]

Hi
Call the PVA. Most people have found them extremely helpful in applying for benefits. It isn’t needs based. It is a benefit you earned

this is a guide Guide to Veterans' Benefits Not sure it is totally updated but it will get you started to see what is available. I am sorry for your diagnosis but the VA benefits for PALS will help immensely with the practical things

 

[Atsugi]

Hi, MICMON.
I used to work at VA in the financial reimbursement department.
Plus, my wife had ALS. This was many years ago.
The insurance plans that you have will not interfere with your VA benefits once you are rated 100 percent service connected "Totally and Permanently" disabled.

But, before you are rated, any trips to the Emergency Room will be covered by your personal insurance.

You can get approved and rated by VA rather quickly (relatively quickly).
As Nikki rightly said, contact the PVA local to you. See the PVA locator at pva (dot) org (slash) find-support/national-service-office/

The value of VA benefits in ALS is big bucks, so don't delay.

 

[frankb]

sorry, MICMON, for your diagnosis but congrats on your military service. also, congrats on locking in long term care insurance. the va has absolutely wonderful benefits, i.e. home modification, powerchairs, and handicapped modified vehicles to name only some. the va now considers military service a presumptive cause for als and therefor you will be rated 100% disabled. however, in my opinion the va is far from the easiest organization to deal with.. my pva representative has provided invaluable assistance in working through va entanglements, specially what i considered to be logjams. also, don't forget to call on your local state als chapter. they are good people. and last but not least take advantage of this forum. the forum has some of the most knowledgeable people to help us travel through our als journey. remember, no question is too small. and finally, don't delay in contacting the va because every day delayed is costing you money. i wish you good luck.

 

[micmon]

OH you all are wonderful. Thanks for the great info. and your warm wishes. So I should go ahead and fill out and send in the VA Application for Health Benefits? I'll find the closest PVA and get off on the right foot. (Or at lease the correct one.) Do I need to attach anything? (diagnosis? DD214?) The form seems pretty simple and straightforward, particularly for a govt doc.

Thanks again. I am still horrified and in shock that I have ALS, but I am so glad I found you all.

 

[Clearwater AL]

I'm a Viet Nam vet too. The clerical attention to detail wasn't so great back then.
Look over your DD214 closely and make sure everything is accurate to your
service. Hope you have one... if not the PVA can help you with that.

The PVA is the only way to go.

 

[Nuts]

Call the PVA--they KNOW ALS and how to get you the help you need. You can apply online and then appoint the PVA as your rep, and then they will be able to access your case online and help you out, but I'd make the phone call first and get their advice. My husband also had Genworth LTC in addition to the VA, Tricare, and health insurance from his work. We used them ALL in addition to Medicare. As he progressed, we had hours for caregivers from the VA and we added to those hours using LTC benefits. We did not exhaust his LTC benefits--please start using them as soon as you need them. I did have one social worker tell me that I'd have to exhaust the LTC before getting aid hours from the VA and I snapped back at her very quickly. He earned the one benefit and chose to pay for the other, therefore he was entitled to both. That was the last I ever heard on that subject.

VA benefits for ALS are NOT based on financial need because ALS is automatically 100% service connected (veterans are afflicted at twice the rate of the rest of the population).

Matt's benefits started very quickly because he was already enrolled in VA healthcare and it was a VA doc who diagnosed him. That doc was also the head of the Duke ALS clinic, so things moved quickly.

Of all the people in the US who have ALS, you are among the best prepared. We had tons of equipment and supplies--all of which I gave away once we no longer needed them. Where possible, they went to PALS.

This site was the first one I found after his diagnosis, and it saved me. The wealth of knowledge here is unmatched and the support is never ending, butt here are also private FB groups for veteran PALS and CALS that you may want to join for even more specific information on VA benefits.

One last bit of advice--request equipment and modifications to your home ASAP. Don't wait until you need them, because some things take time and you can't predict your progression. It's far better to have the stuff waiting to be used than to need it and be waiting.

I am so sorry that you had to join this club, but you found the best place to be.

 

[lgg]

Dear Micmon, My husband was also a Vietnam era veteran. Many have mentioned PVA, I just want to emphasize how wonderful they are. We started with our county VA office. Had we started with PVA the process would have taken days instead of months. I see you are in Texas; so are we. As awful as this disease is, we have found the VA has taken all financial worries off our shoulders. Our house is 100% accessible now due to a VA grant. Warm thoughts going your way. Leslie

 

[Carolina76]

Your Neurologist may be able to put you in touch with your PVA. They can email all the documents to you and walk you through all you need to know. If you have a social worker at your neurologist clinic they can help too. It takes a while during the process, but well worth it!

 

[PrimaVera]

Are you already in the VA Healthcare system? My VA ALS Social Worker has been very helpful. I was literally handed paperwork for handicap van (35k), home tenovations (up to 100k) and paperwork for 100% disability the day diagnosed.
Still had to go thru a VSO, but so much better with her help.

Took only 6 weeks max for disability approval.

Apply for SSDI now too