VA and Private Doc

[John445]

My recent diagnoses of ALS was with my family doctor who is part of a large hospital organization. The team is great and first ALS clinic was helpful in a variety of ways. I am also a Vietnam vet. After understanding the possible financial burden of this journey, the VA benefits with ALS is considerable. This last week was my first VA visit and I was impressed.

I am conflicted.....I want to access the care and benefits the VA offers but still keep my private doctor in the mix. I am wondering if anyone has had this situation and how you handled it?

Thanks, John

 

[rmt]

You can absolutely get the VA benefits and still also use a private physician. That is what we did. The VA benefits are incredible, so I recommend following up with your local PVA to get the paperwork done. You will get a monthly stipend, plus any equipment and medications for free, plus a caregiver stipend (possibly), etc.

 

[John445]

Thanks Robin, what is PVA?

 

[Wilson2009]

PVA is the Paralyzed Veterans of America, a veterans service organization. They specialize in services and assistance to veterans with spinal cord injuries or dysfunction, which includes ALS. They will assist you in filing all the paperwork for compensation including grants for automotive assistance, house modification and supplemental compensation as your symptoms progress.

You indicated that you visited the VA last week. Have you already received a ratings decision on your application for benefits? Can I ask which VA hospital you are connected to?

 

[John445]

At this point we had our first visit with VA last week, just to get into the system. The next appt is the end of November. Now that I am understanding things better, I will have my private doctor fill out VA form stating my diagnosis. We visited Hines VA Hospital outside of Chicago.

 

[Clearwater AL]

John, I'm at somewhat of a loss here... As I and others have suggested for you
to work with the PVA. I got all kinds of this and that, wanted paper work with
the VA. I turned it over the PVA... it was just a matter of phones calls. Did not have to
go to any facility. The PVA got the diagnostic code, records, neuro info and about
within two weeks the benefits were in place. Just with a phone call to my PVA rep
the stair lift has been installed and my custom wheel chair delivered. Soon they
are going to modify our bathroom and a ramp out front. Again, all done over
the phone.

If you're comfortable working with just the VA... it's up to you.

 

[John445]

Maybe I am confused.......

My private doctor has diagnosed ALS. As a vet, I would like to avail of VA benefits. To receive benefits, doesn't the VA need a diagnosis? A VA diagnosis would be a second opinion (which some friends and family recommend). After that, is applying for benefits difficult? I appreciate your advice and have no doubt PVA are great folks. But doesn't adding PVA put another layer into the mix? Just trying to work it all out here during a trying time.
Thanks, John

 

[Clearwater AL]

John, the PVA is the Veterans Administration. it's a section of the Veterans Administration.
Here they are in the same building, same floor, same address. Ok, was your private doctor
a certified ALS doctor? If not that may explain a lot.

Just trying to help. Hope everything eventually works out for you. Wishing the best.

 

[John445]

Thank you all, good information. I have reached out to the PVA.

John

 

[Clearwater AL]

Ok, I did make a mistake... the PVA is not part of the VA. They specialize in ALS and
the VA takes them as the most creditable representative for Veterans who have been
diagnosed with ALS.

"Here they are in the same building, same floor, same address." (In the Federal Building.)
It apparently shows how close they work together. Sorry for the miss info.

Hope everything eventually works out for you. Wishing the best.

 

[John445]

Thanks for the clarification.

 

[andrewf]

I would like to post some information here about our experience. My FIL has ALS, dx in June but really has shown symptoms since 2 years ago. He's a slow progressor, still using a walker. He is a cold-war vet, 1960s in Germany. Fulda Gap area. While he wasn't in SE Asia which was active combat back then, if western Europe had gone hot he'd have been gone in an instant . Probably battlefield nukes before the Soviet tanks rolled in.

In August I started the process of applying for VA benefits for him, and very very quickly found PVA and utilized them to help us, since navigating the VA can be.... not easy. We sent in an intent-to-file in early August, and I started to do all the homework getting his forms ready, and his medical records with the ALS dx code. They originally coded him for Motor Neuron Disease, but verbally and in writing they used "ALS" constantly. We told them it was time to 'fish or cut bait'....is this ALS or not....and code if it is! Done. That's an important part.

There are 5 fast-track VA benefits paths....POWs, MOH awardees, ALS cases, and some others, I was told. They dont get delayed long. Just on this past Friday, PVA called and told me he has been approved. Benefits TBD. Lots of things start happening soon. This will be a lot of help to my parents in law. I've told him...nobody wants ALS but if you have it, you really want to be a veteran. Especially if he is going to be a long-hauler (again, he's probably 2 years into this and still can dorsiflex his contralateral leg and his arms are quite functional) then he will need the support, financial and medical.

Day after Labor day we all got COVID, even him. It wiped him out...couldn't even walk at all. I sympathized, I'm in fine health and I couldn't get up either for half the day. Just drained. Well, he ended up in hospital on his back for a week. BUT....he is back up and mobile as he was before. Which is to say, weak...but walking with a walker still. I'm pleasantly amazed. It was a wake up call...he did not need to go to hospital for COVID, the trip there could have alone killed him. He needs better support at home for these situations so he can avoid a hospital trip just due to mobility. We live and learn....

 

[John445]

Thanks!!

 

[teriya]

I recommend you search for "Planning Guide for Loved Ones of a Veteran with ALS" online. It contains comprehensive information on VA benefits. Thanks to Chris Mulholland for creating this excellent checklist. Thanks also to the I am ALS Veterans Team for sharing it with the ALS community.

I agree with Andrew about submitting an Intent-to-File (VA Form 21-0966) early in the process. My award for Special Monthly Compensation (SMC) was back dated to receive 9 additional months of compensation based on a VA Form 21-0966 submission. See About VA Form 21-0966 for more info.