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Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Remember how ZenArcher informed us in August that the government granted ALS a registry, and the military granted benefits for ALS through the VA? Well, Rick went right out and applied last August.

This week he had 3 appointments at the VA hospital. The first was to complete the paperwork. The other two were physicals and tests. We expect that Rick will have 100% disability benefits from the VA very soon. That's what we are told he gets.

We are wondering if any other veterans out there have had any positive response for themselves. The way the economy is going, we need every bit of help we can get.

Rick was granted 20% for his Type II diabetes, but now is granted 100%
Marjorie and Rick
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
I don't know about on this forum but many vets have already been connected. Unfortunately there are many others that are still waiting. It appears to be very dependent on where you live and which VA Regional Office handles your claim.

When submitting make sure that you utilize a VSO such as PVA and ensure that your application is complete.

Also remember that if Rick needs assist in getting dressed, grooming, shower, feeding, toileting or getting up that you may qualify for aid and attendance as well. This rolls into Special Monthly Compensation (SMC) which has payments above and beyond 100%.

You are also entitled to grants to make the home accessible, grants to get a w/c accessible vehicle as well as many others.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
See Marjorie, I told you it was easy.

AL.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
ZenArcher... Wow, you've told us much we didn't know. We are surely paying attention, and as the need arises we will make use of those provisions. Thank you.

The pulmonary specialist has already spoken about a power wheelchair, and the neurologist has mentioned we will get whatever we need, as soon as we need it. This all was promised at the VA clinics where he was diagnosed. He is on SS disability and a 30% Navy pension.

We have had no problems getting whatever we've needed, but I think that is partially due to the attention and sympathy he got from the explosion accident that almost took his one leg ....back 1 1/2 years ago. He had successful bone grafting surgery.

So far, Rick is managing with some staggering and a little loss of balance. His main symptoms are his breathing problems during the night. He has a bipap. His lungs and diaphragm are gradually lowering in function. Progression has been very slow, and he is still ambulatory. He is just beginning to have a little problem with his hands, and he still drives.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
ZenArcher

Please tell us what is VSO and PVA are. Rick couldn't figure it out. Thanks.

He gave a certified copy of his DD214 (service and time list) and ID (two)
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
VSO = Veterans Service Organization
PVA = Paralyzed Veterans of America

A VSO will act as an intermediary between you and the VA. They maintain copies of all documents help ensure that all paperwork is properly completed and filed and can help ensure you are getting all the benefits you qualify for. That is how it should work. There are of course some offices and people that are better than others.

There are three main VSOs. PVA as mentioned earlier is the one that the ALS Association has worked with the most. There is also the American Legion and Disabled American Veterans (DAV).
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Jeff,

Thanks for the wealth of information you share regarding the VA and the "how to's". Sharing your knowledge makes it a lot easier for those of us following.

Kim
 

DgtofTNfan

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Joined
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565
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Learn about ALS
Country
US
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KY
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Louisville
When we met my Dad's ALS neuro last week he gave us a contact to a local PVA rep.

I thought he was going to talk about getting established in the VAMC clinic for DME, etc. When he told me my Dad was eligible for compensation, dependent program for my mom, home remodeling grant and vehicle grant, I was in shock. Still am actually. My Dad served in the Air Force until 1962 and who would have thought he was still eligible.? The rep talked about the different levels of compensation based on the "residuals" as the disease progresses and how he would help along the way. I have the paperwork and am waiting for the medical records to submit. I cried on the phone with him. Poor guy.

Hope people know older vets are eligible too.
Dana
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
If you served 90 consecutive days on active duty and are diagnosed with ALS you are eligible regardless of when or where you served.
 

grantst44

Member
Joined
Oct 1, 2008
Messages
23
Reason
Loved one DX
Country
US
State
VA
City
Chesapeake
VA benefits and claim for compensation

If you are diagnosed with ALS, it doesn't have to be by the VA. My husband has been undergoing tests for about a year and was diagnosed in January by his neurologist. We were in touch with the local ALS association and she knew people at the VA and contacted them ahead of time. When my husband went there, they did all his claim paperwork and listed what his needs are now and what they will be in the future. They said they would send visiting nurses out to the house, house remodeling for handicap up to $60,000. The person filling out the forms was director of paralyzed veterans and knew how to fill out the paperwork. They said he would get somewhere between 4,000 and 11,000 a month. A letter should come in 30 days to let him know.
He just went to the VA Med Center to get started with being treated this week. He brought his paperwork (DD214, etc.) a while ago so he could get into the system. Now he will get all his care there. He just went out of work last week on disability. He has also filed short term disability with his work, they also have a long term disability plan. His VA claim will not be considered or interfere with any other compensation, such as SS disability or work disability.
I've done a lot of homework and we have tried to plan ahead. When I called the ALS association, they were wonderful and very helpful. They have sources and knowledge. Even if there is not one local near you, try to get in touch with one to learn as much as you can.
 

grantst44

Member
Joined
Oct 1, 2008
Messages
23
Reason
Loved one DX
Country
US
State
VA
City
Chesapeake
PS - my husband

My husband is 62 and it doesn't matter when you were in the service, all your medical care will be covered by the VA. We live near the VA Medical Center in Hampton, Virginia so it's huge center.
 

DgtofTNfan

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Feb 14, 2009
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Learn about ALS
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US
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KY
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Louisville
VAMC clinic

Can someone help me wrap my head around the advantages of enrolling in the VAMC medical system?

My Dad has been diagnosed with ALS for a little over a week. My parents are both understandably overwhelmed with not only the diagnosis but all the things that need to be done and both feel they don't "need" to go to the VA when he is already seeing so many specialists and has good medical coverage. At this point all that has been recommended has been covered.

We have discussed the augmentative communication devices and other DME but my parents are of an age (or I should say mindset) that the technology is too complicated for them so they don't see the need to get something that my Dad wont use. They feel like the clinic appts will be another doctor to see to complicate his care, among other things.

What are the positives and what are the advantages of getting the first appointment started earlier? I think I know what they are, I am just have trouble conveying them to my parents. I am hoping my Dad will reconsider once things calm down after meeting the next couple of specialists.
Thanks.
Dana
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Once enrolled and service connected you only have to visit the VA once per year to stay enrolled. You are not required to use VA facilities however you will have to pay whatever is required if you go outside the VA. I use my ALSA clinic but use the VA to fill all prescriptions and get equipment. In my case my neuro or OT/PT writes the prescription and I fax it to my local VA outpatient clinic. They then put it in and fill it. My meds are sent to the house through the mail and automatically refilled as needed. Any equipment usually involves a trip to the VA hospital for evaluation but I'd rather deal with that inconvenience than pay out of pocket. Now in terms of benefits.

  1. Medications related to ALS are free (Rilutek, Baclofen, etc)
  2. Any adaptive equipment is free (walkers, shower seats, etc)
  3. Power wheelchair is free
  4. Home modification grant of $60,000
  5. Automobile grant of $11,000
  6. Compensation payments up to $8,000/month above and beyond Social Security
  7. DIC payments for spouse following veterans death
  8. Clothing allowance

The list goes on but that should make the point. If your father served at least 90 days consecutive active duty and has been diagnosed with ALS he will be presumed service connected and be eligible for all benefits. Contact your local Paralyzed Veterans of America (PVA) office and get this started now.
 

DgtofTNfan

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Joined
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Learn about ALS
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KY
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Louisville
Thanks for the list Jeff!

It is good to know that he could just keep a yearly appointment and remain eligible. I think that would help in persuading him. He does have co-pays for scripts so that may help too.

My Dad has Medicare/supplement and I work in rehab so I know the limitations there in establishing med nec for equipment as you mentioned. He is losing his ability to speak/be understood so his frustration may cause him to reconsider an augmentative communication device which Medicare

I have spoke with the PVA who has started paperwork for the compensation and said he will help with home mod, vehicle mod and DIC payment forms as the disease progresses. He did say that you do not have to enroll in the clinic to be eligible for these programs as they are 2 seperate benefits. Does that sound right to you?

Thanks again.
Dana
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Compensation, home modification, auto grant and probably a few others do not require that you be enrolled in health care just be service connected. Getting your medications and I believe things like shower seats, etc require you be enrolled in health care but other than the meds I'm not certain. As I said earlier though enrolling in health care means an annual visit to the nearest outpatient clinic to remain eligible. It is more than worth the effort.

From the VA website concerning health care: These benefits may include medical and respite care and prosthetic items, such as wheelchairs, walkers, canes, etc. Prescriptions and medical supplies also may be included, as well as a HISA grant.

Based on the above it sounds to me like enrollment in health care is required for durable medical equipment which by itself makes it more than worth it. Even if the Rilutek copay is $5/month you just saved $60/year. Add to that any other drugs prescribed for ALS such as Baclofen, antidepressants, glycopyrrolate, pain killers, etc and that can add up quickly. Then tack on a $25,000 power chair and ... I think he'll get the point ;-)
 
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