VA is expanding its Home Based Primary Care program for home bound veterans. Worth the effort for vets to check with a service officer assigned to their local VFW, American Legion, DAV.

Really good news is that it looks like pHDs who are vets and in the advanced stage of HD qualify for 100% disability. Am chasing this to ground with Linda’s VA case manager and the service officer at the local DAV. Has lots of implications – health care; long term care; federal, state and local taxes.

www.benefits.va.gov/WARMS/docs/regs/38cfr/bookc/.../s4_124a.

From the south of Maryland

Fred Lothrop

Fred, that link doesn't appear to go where you intended. Can you tell us how to get there?

Lizzieann

Lizzieann


Google Veterans administration huntingtons disease should get you there - the benefits page will have the schedule of ratings 4.124a - para 8105 has Huntington's.

don't know what happened with posting the link - must be this grey headed old man

good luck

Fred

Question, is this only for service members diagnosed while serving in the military? My husband is retired AirForce and has 20 percent service connected disability. He was diagnosed several years after leaving the military. He receives AF retirement that he is taxed on, but his 20 percent disability check is not taxed.
We were finally able to get in to see a VA doctor in January, and we received a letter stating that at his 20% disability level, he is a priority 3 for services. His psych eval was a 10 month wait, so we won't see that doc until October.
After a behavioral crisis earlier this year, I was referred to a VA Social worker and she helped us get a CNA to come out twice a week to help my husband shower, shave, and brush his teeth. His VA doctor also notified the DMV that he can no longer drive.
Are there steps we need to take to get him re-evaluated for his disability level as his disease progesses?

I didn't know you could get a disabilty check and retirement pension, of course my husband is not disabled from any service connection- since HD was seen after retirement from the military. I did get the VA doc to determine him CATASTROPHICALLY DISABLED which he is category 4 and gets ADULT DAY CARE some days per week and PERSONAL CARE/HOMEMAKER 8 hrs per week alomg with 30 days respite per year. I work full time, so this helps cover some of his care I pay for and some days he goes a to medical Adult Day Care (it is hard to get him there more than 2 days per week because of the morning and afternoon drive time before i have to be at work) he is late mid stage.

The good thing about being determined catastrophically disabled is there are no copays, except if he went to LTC facility. So no copays for the personal care or homemaker hours or the adult day care facility

Since he is not service connected disabled i don't think the rating would help us any?

Lizzieann



Edited 1 time(s). Last edit at 08/16/2013 04:13PM by LizzieAnn.

One thing I do know is that when my husband left the military 20% disabled, they took away 20% of his retirement pay and replaced it with disability pay. He doesn't get double pay, but at tax time, the retirement is taxable but the disability payments are not. LizzieAnn, does your husband use Tricare Prime or Standard, or just VA? I got some information recently that we will need to make decisions by October on Medicare insurance selections.

Medicare is the primary and Tricare For Life does the rest. He see's a neuro who is not at the VA and Medicare and Tricare cover that fully.

Every 6 months he has to go to VA to see the doc brieflly to review him for the VA homecare and make sure he "still" meets criteria for Adult Day Care, like a review. Otherwise he see's the neuro out in the community. We could get his meds with no copay at VA but i just let Tricare pay and we pay the copay as it's not a lot and i didn't want to change from getting auto delivery from express scripts and the neuro just calls it in, didn't know how switching meds to VA would go as they are a little drive for us and time off from work to pick up is difficult. Once you are on medicare, your Tricre goes to Tricare for Life, we never did have Prime, just Standard

This is interesting news. My husband applied for VA disability in 2008 for numerous problems. They granted him only 10% for sinus problems and we've been in appeals ever since. We found evidence in his medical records of early stage HD problems, unexplained falls, memory issues and so on. So far the VA has ignored everything.
A year and a half ago he had an appointment with a Dr. to update his sinus rating. She happened to be the head VA Dr. for the whole state. She was shocked that he was given only a 10% rating and that his original VA rating exam was done only by an assistant (not a DR.) who has since been fired for NOT doing her job. She requested that his original rating exam be thrown out and he be given a new exam for all issues. Since then we have not heard a word from VA.
I have taken him to his yearly VA medical exam and they have documented that he is in the advanced stages and in a nursing home. I really feel that VA is just waiting for him to die so they can close the file.
It makes me so angry that the VA is trying to sweep him under the rug. They certainly didn't feel that way went he spent years on nuclear submarines serving his country.
Right now I'm in the process of writing to anyone and everyone I can think of from the President on down. This will be the 2nd time I've done that.
Please, if you can find the link above please post. VA+Huntingtons disease only seems to take me to info on the VA clinic in Huntinton, VA.

My reading of the VA schedule,

the lead in para "§4.124a Schedule of ratings—neurological conditions and convulsive disorders.
"With the exceptions noted, disability from the following diseases and their residuals may be rated from 10 percent to 100 percent in proportion to the impairment of motor, sensory, or mental function. Consider especially psychotic manifestations, complete or partial loss of use of one or more extremities, speech disturbances, impairment of vision, disturbances of gait, tremors, visceral manifestations, etc., referring to the appropriate bodily system of the schedule. With partial loss of use of one or more extremities from neurological lesions, rate by comparison with the mild, moderate, severe, or complete paralysis of peripheral nerves]"

and "para 8106 Chorea, Huntington’s. Rate as Sydenham’s chorea. This, though a familial disease, has its onset in late adult life, and is considered a ratable disability"

is there is no qualification on date of diagnosis.

Meeting with a VA benefits person next week to review Linda's application prior to submission.

In the mean time suggest you all contact your COE's, HD support groups, veteran organizations, VA medical case workers and anyone else you can think of to stir this pot.

Fred Lothrop

Thanks Fred.
I've been working with our local COE since 2008.

The trick in this whole situation is this: The VA wants to see service connection. Even though my husbands service records show him being treated for unexplained falls, depression, psychological issues and dizziness, BECAUSE they don't specifically say these things were caused by HD, they will not service connect them.
Instead they issue a standard statement saying it could be from another 'neurological issue'.

My beef is this: They missed the diagnosis. Was he supposed to diagnose himself before discharge?
1) Denial is a huge problem in early symptoms of HD and most phd's will not volunteer to be tested even if there is a known family history.
2) Why didn't the VA find the source of the 'other neurological' disorder?
3) He was never offered or encouraged to have any neurological testing, why is that?

They state in their original denial letter that nothing in his records say anything about HD. Well, Vietnam veterans being discharged probably didn't complain about the cancer they'd get years later from Agent Orange exposure either, so this shouldn't be relevant.

The VA now rates any Veteran with ALS at 100%. Most of those suffering with ALS didn't know at discharge that they'd be stricken with that horrible disease so why is HD treated differently?

The VA system is severely broken. We have been stuck in the system of word games and dodge the issue for over 5 years now. I really believe they are hoping he will die soon so they don't have to deal with his file.

LizzieAnn is right - for retired vets, when eligible for Medicare, Tricare For Life kicks in as the secondary insurer. Doubt if it kicks in automatically as you and dependents have to be in the DEERS system - may want to check in person. Have to pay Medicare A and B premiums - but TFL is no cost to the vet and dependents. Between Medicare and TFL I only pay 17$ copay for 30 days supply of xenazine for Linda.


Indigo - my sense is that HD will evaluated in the same manner as ALS. The rating schedule is fairly recent in government terms, so maybe it hasn't been pushed yet. What if anything has HDSA or your COE done for pHD vets? 2008 is a long time.
And yes, the medical care community is focused on treating symptoms. That is why I question every medic seeing Linda as I did two weeks a go when she ended up in the ER and the hospital after a fall - after talking, nicely, to the admitting and attending doctors - the record reflects she fell because of imbalance caused by her HD, the fall resulted in a broken back. The follow-on home care was ordered because of her fall - as a result of HD. Her primary care Dr. prescribes an antidepressant to alleviate the depression caused by HD. And, I always ask for a copy of their notes
Have been in the system since 1980 and don't see the VA system as broken, but rather overwhelmed with baby boomers, gen x'ers, the heavy demands by returnees from unfunded extended wars and the fall out from continuing budgetary battles.

I still don't connect the dots on this one. How is HD ever going to be a service connected disability? I mean, how is HD caused or worsened by a person's service in the military? Does it make a differnce if someone was diagnosed with HD while active duty or after active duty? I always thought ALS was different because it may have actually been caused by coming in contact with something in the environment where as HD is contracted from being born, therefore HD can never be service connected. That was always my understanding. Am i wrong in my assumptions? I understand stress can worsen symptoms but that is true with any life events, not caused by serving in the military. Is this the VA's position on rating HD as any service connection? Just trying to figure this one out.

Lizzieann

Am the first to admit I don't know all the answers - but the wording in the schedule -"though a familial disease, has its onset in late adult life, and is considered a ratable disability" seem to be the key - will talk with the benefits person this week to see where and how we go from here. My Dad used to say - " you will never know the answer until you ask the question"

Fred, will be eager to find out what you learn. Please, keep us imformed.

This doesn't really relate to the current discussion. All Vietnam vets (I'm one) who were in-country when Agent Orange was used are "presumed" to have contracted certain diseases or conditions as a result of exposure. Oddly, one of them is Parkinson's.

I'm quite sure I wasn't exposed since I spent my time in the northern mountains part of the country. Agent Orange was used primarily in the more southern jungle areas.

Will

Actually, Will that's exactly what i was thinking, the way the VA views other disease's is that there is a chance that they were contracted as a result of exposure and therefore it is presumed that it occured due to exposure while in service....therefore contracted while serving or made worse by service. But, how is that possible with HD? I have not heard of anyone being approved as HD being considered a service connected disability. Maybe someone that is active duty with HD is discharged due to medical disability from active duty can get disability due to them going from active status but i didn't think that was considered service connected.

Lizzieann

For you legal beavers, found two appeals for consideration for VA benefits and HD
09/29/97, docket 95-14 812, Huntington's chorea as a residual of exposure to Agent Orange - denied
04/13/05, docket 97-30 386 Entitlement for Huntington's Chorea - denied

Yeah, I know its another windmill, - but what the hey.

There are numerous cases of Vets being approved for HD. Most of them were diagnosed before discharge.
No one knows why 2 people with the same CAG can have onset years apart.

I have no doubt that the stress of military service, vaccinations and intense training takes its toll on every service person.
A person with an already compromised system, known or unknown, is bound to be affected in some way.
Unless the Military is going to start testing for genetic defects and excluding those with defects, then a person who starts to show symptoms while on active duty, should be covered.

My husband was involved in 2 car accidents while on active duty and suffered concussions in both. He was also exposed to radiation and asbestoses while serving on nuclear subs. He had stitches and a mild concussion after losing his balance in an unexplained fall onboard. These are just a few examples of the medical problems he had. Unfortunately the dots didn't get connected until after he was discharged.

Had they tested my husband before discharge he would have tested Hd+. It was obvious from his medical records that something was happening. There is a medical evaluation at discharge, and unfortunately, most of these exams are a quick 'you look fine to me, see ya later' type of exam.

Vets who develop ALS later in life are covered and no one can say definitively that military service was the cause, but it is presumed.
Vets who are diagnosed with hd should be given the same consideration especially when medical records show "some neurological" issue.

well right now I am and this situation my husband is retired Military having to many problems with medication in our small town I decided to take him to the VA in San Diego best service so far and last week I got a bill from them I called them and ask them about his beneficts with them and told them that my husband has Medicare and Tricare for Life and they told me they can not bill Medicare that what ever they are charging me I could do payments its not a lot right now but I am thinking if he needs to get in the hospital then I will be in trouble I called Medicare they said exacly what VA told me they are both goverment now I have an appointment with tricare and see what they say I am so tired and thought that finally I found a good place for my husband at the VA and now I may have to switch him to a place that takes Medicare, oh well I I have to keep searching and see this is so stressful not sure witch one is worse the desease or making sure to find a place to take care of the desease, if anyone has anything that can help me out please let me know I am open to any suggestions.

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