CALS

no other help avail. docs here in reno do not do the surgery, so waiting for consult in sacramento.

UPDATE, and not good. VA benefits stop effective 12-2011. Trying to get a lawyer, but they say we do not have a case. As of 12 01 2011, my kids and I have no health insurance, and we just found out last month that my 17 yr old daughter needs Major surgery on her hip. Going to be impossible to get insurance for her, so she will probably end up in a wheelchair for life. Trying to get Shriners to help, but by the time we get through the red tape she will probably be 18, and too old for Shriners to help. Just trying to figure out how to get my daughter insurance, and live on $1800 a month. HUGS Lori

Thanks all. Berta, we do go to one of the top ALS clinics in the US. My husband does have ALS. His original DX was done outside the VA. ALSA was who told us it was covered because he was a Veteran. I had read Katrina's advise before coming on here. I have talked with Jim Strickland about this.He was the one who told me about waivers. We are seeing our VSO tomorrow. The reason we had decided not to put in for an appeal is because with no new evidence, once the hearing concludes, and a decision is reached, benefits stop immediately. Doing the 60 days, we will get benefits until 2 months after final decision, which means till Oct, which saving this money will allow us to keep our home. There is No way the hearing will not be held in July or Aug, meaning we would lose benefits 2 months earlier. The only way to prevail is to get Congress to change the law, or have the VA change his DD 214. We will see a lawyer this week also, however, finding one to take this on will be another challenge. They originally said he had active duty for the period when he was at Ft Lee for his MOS training. They missed where it said it was for training. I discovered the info about ADSW while doing research, and had hoped it was under Title 10, but it is most likely under 32, if it was ADSW at all. It is listed on his DD214 as inactive duty service.

We have lived and planned our lives after his diagnosis with ALS with the knowledge that we would be receiving VA benefits. We would have planned differently if we had no VA benefits. Our VSO officer advised us NOT to file for a hearing. Our consult is with the VAMC for his trache, however, 24/7 care is required with a trache and vent, and I will have to return to work in order for our family to survive, therefore I can not give him 24/7 care. The R1 allowance would have allowed us to hire attendants for him, which is the only reason we requested an increase. No single person can provide 24/7 care for a person on a trache and vent. And you are right, my husband would already be dead if it wasn't for the VA benefits. Now , because they are taking away his benefits, he will die SOON. We had hope, now we have nothing. Carlie, please watch some of the links I will post about ALS, and put yourself in my shoes. We are continuing to fight in the hope of a cure. The "WE" will now become just "ME", because my husband will die in the next 6 months without VA care. I will fight for him until the day I die. http://www.cmt.com/videos/ty-herndon/603383/journey-on.jhtml If this was happening to your loved one, would you just say, Oh Well, and give up??

Thanks for all the help on this matter. We are going to try and get his time sheets and records for the time we hope is ADSW, although it is very unlikely. We are not asking for a hearing on the advise of our VSO, since doing so will subject us to over payments, and once they make a ruling, the payments stop immediately. Our VA works real fast(from the time we filed original claim till first check was 3 wks) and the wording in our paperwork says we will get at least 3 more payments with no over payment. The amount we are losing is staggering. $500,000. I am grateful for the benefits we have received, however, taking them away at this point in my husbands disease is so hard. If we had never received any benefits we would not be facing the decisions we are facing today. After long and painful discussions, my husband had made the decision to continue his fight against this horrible disease by getting a trache and vent. He has an appt for surgery consult on this on July 17. He has already beaten the odds by living with ALS for 4 years, and he made the decision to continue the fight. Now, with no VA benefits, he can not get a trache and vent, and has to face the facts that he will most likely die before his 47th Birthday. He feels he has let his family down, and the depression that he has now is heartbreaking. I will fight this until the day I die, unfortunately, I will have to fight it without my husband. HUGS Lori

ALS is automaticly awarded at 30%(although it is going to be raised to 100% soon) and we immediately put in for an increase, and increase was granted 7 days later. We also put in for an increase and had a C&P in Feb 2010, which was not granted. We put in for another increase in Feb 2011, it was granted, but they proposed to deem my husband incompetent. We put in a NOD on the incompetency, and they deemed him competent, and in the same letter informed of they made a CUE. Here is what the letter states: You are considered competent for VA purposes. A clear and unmistakable error is found in the grant of service connection for Amytrophic Lateral Sclerosis (ALS) therefore severance of service connection is proposed. Important Information A clear and unmistakable error is found in the rating decision dated Sept 28, 2009, which granted service connection for ALS therefore severance of service connection is proposed. There is no record of ALS occurring during active duty service nor a diagnosis within one year of discharge from active duty. The ratings decision dated 9 28 09 committed a clear and unmistakable in granting service connection for ALS on a presumptive basis since the record does not show that the veteran has active, continuous service of 90 days or more nor is service connected for a separate disability on either a direct or aggravated basis. Your DD214 shows you served from 10/25/83, to 1/30/84, and were released from Active Duty for Training(ADT) upon completion of your MOS training. It also notes prior active duty for 2 months and seventeen days. The record does not show service connection has been granted for a separate disability on either a direct or aggravated basis nor that you served on active duty under Title 10 or 32. SO: The time frame we think he had ADSW is from Feb 1983 to June 1983. He worked at the Base, turned in a time sheet each week to the custodian of records, and was told he was on Active duty by the AG, and was getting paid from a special fund.He was paid at his E 1 rate and received a Federal check. In about June of 1983, he got a full time job on the shooting range and got a significant raise in pay. Then in Oct 83 he went to his MOS training. On his DD214 it shows "Total Prior Inactive Service" line e as 8 mos 15 days, which covers the time from release from boot camp to going to his MOS. Could this 8 months have really been inactive service?

Can't scan, but will type. This is from we got it raised from 30% to 100% plus SMC's: "The records reflect that you are a veteran of Peacetime. You served in the Army from Oct 25, 1983 to Jan 30, 1984. We grant service connection for a disability that began in military service or was caused by some event or experience in service. The records in this case have been reviewed and the issues considered under the provisions of VCCA (Public Law 106-475). We have determined that all indicated development has been undertaken and all reasonable efforts to assist you in pursuing your claim has been exhausted. The evidence of record is shown to be sufficient to render a sound decision on the merits of this case. The following decisions have been made based on a review of all evidence listed." Then it list the service connections for ALS and loss of feet ect. Under the "What we decided" part it says: "We decided the following conditions were related to your military service, so service connection has been granted:" Then it lists ALS and loss of feet ect.

Thanks all! It doesn't show up on his DD-214 or his Guard release form, so we are going to try and contact someone in Phoenix to see if there are more records. He was granted under the Presumptive clause. What we need to find out is : What was he working under from Feb 1983 to May or June of 1983(when he got hired full time for the Guard) He received his E-1 pay during this time. He was told by the AG that he was being put on Active Duty, was paid a Federal check, and was doing NO training. When he got out of Boot camp, his MOS training was not scheduled until 8 months down the road, he had no job, so the AG told him he had no job at the time for him, but had special funding to do landscaping and maintenance around the base. If it wasn't ADSW or ADT(active duty for training) what was it? It was some kind of Active Duty. And how can I prove it is ADSW if it isn't in his records. This was almost 30 yrs ago that all this took place. I SO appreciate all of you!! HUGS Lori

Hi All, I may have found something. His 4 months that he was put on active duty after boot camp, and before he got his full time job with the Guard, may be "ADSW" (Active Duty for Special Work) under Title 10. Any comments? I know not everything will show up on his DD 214. Any ideas where I go from here. My service Officer(VFW) is not a lot of help, but I am talking with one from Vegas(PVA) who is really good. Only problem Vegas is 8 hrs away. Can't talk with him till Thursday, and my local guy is out till next Monday!!

We do not know the answers to the question about his medical status at the VA, and our service officer is clueless. We are on first name basis with everyone at the VAMC. Our social worker will be devastated when we tell him what is going on, however we do not want anyone to know because we need to continue receiving help there as long as possibl He has Medicare and SSDI, however all his doctors are at the VA. NCS will be out, as he does not have the 90 days, not for training, which is why we are losing everything. All of his problems are related to his ALS. We are currently at R1.

Thanks all. What our Service officer is telling us is that this letter dated May 25th is only a proposal, and we will continue to have benefits for 2 months after they send us the letter with the final decision. A proposal is not final action. He went int the Guard at 18, in 1982. He did split training(boot camp first) then came home, then went for MOS training in 10-83 to 2-84, which is what they are considering his active duty. He worked for AMG until 1987, and there were no call ups during this time. When he was doing his MOS, Grenada happened, and he was supposed to be deployed, but it was called off. His 2 commanders did go however. Our local VA works very fast(he got his original benefits in 3 wks) and if we ask for a hearing, the action becomes final once they decide the case, and since we have nothing to present at the hearing our case would be final possibly by the end of July. The VA has to follow the laws set by Congress, and Congress is who wrote the ALS law. My husband has an appt set for July to do a consult for a trache and vent, without which he will die. If the VA cuts us off, he will not be able to get this, as it requires 24 hr constant care, and I can not ask my 16yr old daughter to take this on if I have to get a job. Also, in order for us to keep his scripts he will have to go on Hospice, which does not allow for PALS with a Vent. Before all this happened, he was confident that he would see his daughter graduate, now he has accepted the fact that he will not even be here next Fathers Day. My husband is still alive today because of the VA. If they take back all his DME's, he will be confined to a bed 24/7. He has progressed so much in the month that we received this news, and he has lost his will to fight this horrible disease.

If the VA proposes to sever service connection because of a CUE(Veteran was awarded service connection in error, as his 90 days active duty was for training) Is the initial letter proposing to sever service connection the date that will be used end benefits, or is the date 60 days from the actual date the final decision was made? We received a letter dated May 25, our 60 days will be up on July 25, will benefits end on Aug 1st or Oct 1st?

Quick update and question We have been advised to not ask for a hearing, as we would have to pay money back. In our letter it states- "If we do not receive additional evidence from you within 60 days, we will reduce your evaluation. Your benefit payment will stop the first day of the third month following our notice to you of the final decision." Our letter was dated May 25, Does this mean that after July 25 they will notify us of final decision, and final benefit payment will be the first day of the third month (after July 25), or will it be the May 25th date? Can the final decision be dated May 25th, or will it be the date they actually make the final decision. I have read it both ways. We will become homeless if we do not receive a check on August 1st. If we receive checks for Aug and Sept, we can save the money so we can survive another 6 months, and have my daughter stay home to care for her Dad(she is 16) and I can find a job. She can do on line school to finish high school.

"A clear and unmistakable error is found in the rating decision dated 9/28/09 which granted service connection for ALS, therefore, severance of service connection is proposed." "The record does not show the Veteran has active,continuous service of 90 days or more nor is service connected for a separate disability." What gets me is he served with people who were active duty Army, and was all set to be deployed to Grenada. If these other Vets get ALS they will be covered because they were regular Army, and not Army Nat Guard. We do have Medicare and SSDI, but his SSDI will not even cover his scripts .Rilutek costs over $1,000 a month, and is the only medicine approved to slow the progression of ALS. I am unable to work, as he requires 24 hr care, and Medicare does not cover home care at all. I may be able to put him on hospice, which will cover some scripts, but he doesnt want to die, and was going to get a vent and trache, which if he gets, he can not be on hospice. If we had never gotten VA benefits, we would have had applied for loans and scholarships for our son to attend college. He graduates next week from high school, and we have to tell him he can not go to college. We will have to move to a place we can afford on less than $2000 a month. My husband will have to find new doctors. He is a paralyzed Veteran, who served his country, and the stress from all of this will probably kill him within 6 months. Without the benefits the VA has been providing us, his health will suffer to the point it will kill him. With a trache and vent, he would have been able to see our daughter graduate from high school in 2 years. He has lost his will to live and fight this horrible disease. If he hadn't been in the Military, he wouldn't have ALS, and if they hadn't made this mistake we wouldn't be going through this nightmare for a second time. When our lives were turned upside down with his DX, he was able to do things. Now, he is bedridden, and this disruption of our life is going to kill him.

I know about the 30 days to request hearing. He was in Army Nat Guard, and they originally accepted his 90 day active duty, but are now saying that it was for training, which makes him ineligible for benefit for ALS. They made a CUE in granting service connection to begin with, and are now proposing to sever his service connection based on the fact that he did not have 90 days continuous active duty. I think we have no recourse, as what they are saying is true, but we will be financially ruined if this happens. He was granted service connection in 2009, retroactive back to 2008 when the law went into affect.