Sunday, October 30, 2011

VA Caregiver Program

Many of you have written in to ask about the New Caregiver Program for post 9-11 disabled veterans who require care full time or assistance with daily living. There are some who haven't either heard about it, have some misconceptions, ideas, and yes, even a few think it's a little scary. It's a VA program so yes, I was worried too, I'll admit. I am hoping to write this out to answer some questions, provide some information on it for those who need it and clear the path of the unsure for others. Our process believe it or not, honestly wasn't bad at all. Y'all know I will shoot straight from the hip and tell you how it is!

When it first started, I didn't know anymore than just rumors that it was being put into place and getting set up. Our Federal Recovery Coordinator told me about it and being the upbeat and dear person she is, encouraged me to contact them. I called on several occasions when it had just started. When I mean just started, I mean like they had just turned the 1-800 number on and the people answering were just as baffled as I was. There was some confusion right at the beginning and to be honest with you....I really kind of checked it off my list of things that the VA had to offer. I had the same idea that many of you have of "Oh God, here we go again. Just another promise, but no follow through"! After the third call that left me filled with more questions that what I had to begin with, I figured that this wasn't for our situation. A month later, my dear friend Brannan at Family of a vet encouraged me again as well as our coordinators assigned to us. The requirements for the program were a bit confusing, parts still being adjusted and tweeked; leaving still quite a few of us out that didn't really fall in the guidelines.

As the time went by, the Caregiver Program was often brought up to me and I explained the reason the 1-800 number told me I didn't qualify. As many of you know that follow all the time, my husband is still considered in service although not able to serve. He hasn't served since December of last year with January's "bottom falling out" sealing the deal. Now with us, we have asked about the Med Board process for three years so we were kind of stuck in the middle of nowhere land up until this year. One of the requirements for the Caregiver Program is a medical discharge date or estimated date. I didn't have that, so I couldn't even fill out the application online.

After speaking to the OIF/OEF director, the best solution for us was to simply call and ask the Caregiver Program Coordinator/Director herself. We had otherwise fit the bill for requirements so to speak, and she felt like we really needed to pursue this. This proved to be the best way to get not only the information, but the correct information and believe it or not, I haven't had one single complaint at all about this program so far except that it leaves out many others like our Gulf War and Vietnam families. Now for those of you who are wondering like this question that came in "What the hell is the VA Caregiver Program?"

The Caregiver program, (the fancier name as it was created, the Caregivers and Veterans Omnibus Health Services Act) was created and signed in as a program that was ready for applications starting May 9th of this year. It is designed to help provide respite care, counseling, training, insurance for spouses (more on this here in a second) and a monthly stipend for those (person who is considered primary care giver to the veteran) who care for wounded veterans that require assistance in daily activities. This program is very monumental and one that was fought and pushed for by many. Currently, this program is only for those suffering from severe physical and psychological wounds that were sustained in the Iraq and Afghanistan wars that requires them to need assistance. I don't honestly know if the respite care coverage is the same for all, but for us it was 30 days per year I can use should I need it. If you do not have insurance for health coverage, you can qualify as a caregiver for Champ VA. This does not mean you can stop using your health coverage if you have it. Only if you don't have one in place and need insurance. The monthly stipend is based on the level of care, how many hours is determined by the tier that you fell in and the pay based on that particular tier.

Once the application was filled out, I mailed it in and it took about two weeks before it came back to our Coordinator. I was rather impressed with our Coordinator here. She stayed in constant touch with us through the whole process, let me know when she got our application after it was processed and kept us in the loop on the next steps. Those next steps included having a physician, registered nurse or mental health doctor filling out the portion that states the Veteran needs assistance for daily living. We really don't see much of our PCM so was worried, but my husband's psychiatrist knew of our situation, how bad he was and filled it out for us. Before I knew it, we were pre-approved and on our way to expecting the online training from Easter Seals who created the online and workbook training program.

Now to answer many of the questions of who qualifies, its for those who need assistance for daily living and can be for those with mental disabilities such as PTSD and TBI, for those with physical disabilities OR a combination of both. Just remember, this is for those who must have help in order to get through the daily chores of just living. I had some questions that went along the lines of using this to quit their jobs and stay home, although their Veterans were working still full time and needed no care. This program isn't for that. If your Veteran is able to tend to himself, is working and needs no help, this program isn't for you to be able to quit your job and stay home. Not trying to be rude or nasty, just being bluntly honest and let you know you will be turned down. Now there are some who are in Vocational Rehab, needing assistance at home etc in which you might be able to qualify for. Just because some of them work, there are many out there who need assistance at work, at home and basically everywhere. I can't answer who is and who isn't, you just have to contact your VA's Coordinator and ask. It's as simple as that.

Many spouses are not applying because they are unsure if they qualify. Much of the time, we don't stop to look at how much we assist our veterans in daily living. Stop and look at how much you do, and how much they do on their own. You will be asked a series of questions, so this is a prime opportunity to be honest. has a fantastic breakdown of the whole process and the answers to some questions on the Caregiver program. This is a great web source for those who are confused, unsure, scared or wondering how the process works. Once you apply, they receive your application...your start date begins the day they get that application. So for us, I filled out the application and it was received three days later on August 19th. My first check will be on November 1st, which includes back payment from the August date.

The only issue I had was I chose to do my training online rather than doing the workbook. I find it easier to get out of bed early in the wee hours and completed it with just a couple of hours. It doesn't take that long, but do try to pay attention and not guess on the answers. In our case, the Coordinator Director did our home visit with the nurse and asked me some of the questions on the training. So just don't breeze through it and not really know the answers because it might just come back and catch you. The problem I had with the training provided was there was only one small section that had anything to do with those of us who are dealing with the more severe Post Traumatic Stress and TBI Veterans. A bulk of it is medicine related, infections, bed sores, home safety etc. While I found that it was rather easy to navigate, easy to complete and was probably very useful for those with physical kind of left us Caregivers who are full time that are dealing with the psychological wounds of war out. I think I was looking for a bit more in this training such as preparing a safety plan, what to do when they become belligerent and nasty, what to do if they are in a severe flashback. However, I have to look at it this way. Each of our Veterans are different, so even if there had been a solution, that solution might not work for all of us.

So out of all the questions, the dreaded Home Visit seems to be scaring many of you. I have to tell you, this weighed on my mind heavily. Will I be judged? Will my home be clean enough? Do I have everything spic and span? What will they say about the toys in the floor of my child's bedroom? The list and fear kept building up. Let me tell you, I cleaned as if there was no tomorrow. If you came into my home and ran a cotton swab across my floor the only thing you would have found was cleaning products! I organized, I scrubbed, I moved things, I scoured to the point I barely made it through the home visit because I was so sore. I threatened my children with boot camp if they dropped food or drinks on my newly scrubbed and polished kitchen floor, and threatened if they dumped toys all over the place! I had medications nicely organized, laid out in particular fashion and made sure my food pantry and cabinets were those of someone who had severe obsessive compulsive disorder. Readers, I cleaned things with toothbrushes and in places that a normal human being wouldn't even look at, but let's be honest with ourselves. This is the VA we are talking about. We have been raked over the coals so badly, I was so afraid that one little place would cause me to fail our home inspection. It was silly, I knew I was overreacting but still couldn't help feel we were being placed under a microscope. I know that our VA probably doesn't like me that much, and that's ok. I just didn't want them to come into my home and say "Lord, not only is she a pain in the ass but her house is dirty too!"

They didn't even look at any of it. Not anything. They came straight in, made a comment my house smelled really nice, introduced themselves to my husband and sat down in the living room. That was it. There were some questions after they took my husband's blood pressure and weight, like "Do you have smoke alarms and are they working?, A safety plan for emergencies and fire evacuation?" etc. I was so disappointed! Now my house is usually clean and neat, but sometimes slightly cluttered especially since we have been working on paperwork and records for the Med Board. They would ask me a question, and I was willing them mentally to PLEASE go check. I think one of them asked me where the bedroom was located and I said its down the hall and to the right, you want to go see? Hahaha! After all was said and done, they left. We both kind of sighed a sigh of relief, but was like "Is that is?". All that worry, all that cleaning, and all that time spent worrying about the what ifs was pointless. Yet, my house was clean and things had been done that needed to be done for a while now so it was just a good excuse.

I think the purpose of the Home Visit is just to ensure that the home is safe, is a clean environment, has the required safety items like railings on stairs, handles in the bathrooms etc which are all very important. If you need those things, they will help you get those in place. Also, they want to make sure that the Veteran is well taken care of and you aren't abusing, mistreating or letting them live in squalor. Now to speak for our Veterans, these visits can be a little challenging. My husband doesn't really like people he doesn't know in our home. He was very nervous, pissed off, and if looks could kill? They would have had to bury these people twice. His paranoia was evident that day and he was extremely agitated they were here. The other downside of this program, is they will come back every three months to check in. That is mostly just to be sure there aren't any changes, things that are needed, and of course to be sure that the Caregiver is still taking care of them and they don't have them duct taped to some wall down in the basement. (That's a joke people). The thing that bothered my husband the most is that he didn't know these people, the nurse that was required to be here will be a different one every three months. I have to admit....I really didn't like that either. I think for all of us Caregivers, that can be a little nerve wracking because you will see someone different each time and you don't know who they are. For Veterans suffering paranoia on high levels, this can be a bit challenging.

Overall though, I promise you it's not that bad. Most of us who have applied will tell you the same thing. Some have bad stories, some are good. I think it just depends on who is the Caregiver Coordinator and fortunately for us, we seem to have a pretty good one who cares and seems to take her job seriously. It's worth all the paperwork, the wait, the training and the home visits. The issue we are facing right now, is not many people are applying. This is a good program with a lot of beneficial things involved, and if we don't get people to apply....I am afraid the government will come back and say "well, obviously there isn't a need for this and we should cut the program or funding". We don't want that! If you care for your veteran, no matter who you are....I encourage all of you to apply. For those of us Reserve and National Guard programs, and have a DD-214....see if they will accept that as your discharge date because they can use that as these are totally different entities than that of Active Duty components, if their injuries happened during active duty time served.

Check out , there is great information and links for you to look at. Another one is listed here. I have been there and done that with the VA, trust me. I know its scary, I know they can be one of our biggest obstacles when it comes to our Veterans, but I think they might have just gotten this one right. I feel I did better with dealing directly with our Caregiver Coordinator than wasting my time with the 1-800 number but you might find it differently. The National Caregiver Support Line at 1-855-260-3274. You can find the application here and more information. Stop a few minutes and look over it. Talk with your VA Caregiver Coordinator (ask through the operator or your OIF/OEF clinic) and just see if its something that can help you. I think out of all of it, I know that I can call our Coordinator and just talk. If I need counseling, I feel I can get it. Although I know I contribute to our home, work my butt off seven days a week, I feel that with the stipend I am financially contributing and that makes me feel good. For those that say well, I might only be on the lower tier...well, my thoughts are that is one level up from nothing, which is where you are right now.

Hope this helps relieve some of the worries, the stress and confusion about the program. The worst thing that can happen is you apply and they say no, so you haven't lost anything by just making the call. It took a lot of pushing, work and lobbying for this program to go into place. Let's thank those who made this possible by applying for it and utilizing it. Hopefully, in the next couple of years this program will be available to our Gulf War Veteran families as I know they are working on it.

As Always,


  1. so as with most benefits or programs the VIET NAM era veterans with PTSD OR TBI are excluded.

  2. Sheryle, unfortunately yes. This is one of those that our generation of wives and advocates are asking "what about the others?" I really hate that it's not available to all. I really do and often I feel very guilty. I asked a VSO officer/benefits specialist and advocate about any stipend program for Vietnam and there isn't any. He says its due to funding because there are so many Vietnam Veterans compared to ours now. I don't see with the way the economy, government and financial strain on our country, that the CG program will be there always. I do know that the Caregiver Coordinator Support person has a ton of resources for ALL veterans and provides support, training and help. It might help to call and just see? I know its not money, and I apologize that from one caregiver to another. It's not fair at all, especially if they are same or worse situations.

  3. It's a long writing but still I wanna give thanks for sharing good things about those caregivers who willing an d give their time and effort to take good care for the old ones , and because of this I remember the blog of caregivers at home Leisure World.

  4. Just came across this post and thought I would share my experience with the VA Caregiver Program. It sounds like we are in a similar situation. My husband is still technically in service but also not able to serve. We have been dealing with the Med Board for several years. So when a friend, who is in the Caregiver Program, suggested we look into it, I wasn't sure if we would be eligible. I called the Caregiver Coordinator and he instructed me to fill out an application. After filling out the application, the Coordinator sent us a form to release my husband's medical records. A few days later I received a call from the Coordinator explaining that we were eligible and I would be receiving information on how to complete the online training with Easter Seals. I was shocked at how quickly we seemed to be moving through the process. And a few days later I received an email from Easter Seals with my login for training. I called the Caregiver to update him on my completion of the training. He told me I would be receiving a call from "Jon" to set up our home visit.
    Several weeks later, no call. FYI the home visit SHOULD take place no more than 10 days after the training is complete. I decided to call the Coordinator. He seemed annoyed with me and just told me that "Jon" would be calling. More than a month after I completed the training, a woman named "Theresa" called to set up the home visit. When Theresa came to do the home visit, she asked us a series of formal questions. Most of the questions had to do with physical boundaries. My husband's disabilities are mostly psychological. I was surprised when Theresa did not ask us any personal questions. The very next day I got a call from a woman. She introduced herself as the new VA Caregiver Coordinator. She told me that she would be taking over. She told me that she was calling to finalize our application. I was surprised that the process was complete. She told me she needed to me to verify a few things. When she asked if I had been explained my husband's Tier level and that I understand the benefits it included, I said, no. She laughed it off and said that she would go through it with me right then. She explained we were at a Tier 1 (the lowest Tier) and that we would receive $515 per month. I do disagree with this decision, but more so, I didn't have any idea how they came up with the decision to place him at a Tier 1. So I asked..A veteran's Tier level is decided through an evaluation that the veteran's primary care physician (PCP) fills out. That evaluation alone decides the Tier level for the veteran. So here is my problem... my husband DOES NOT see his VA PCP. He has had such poor experiences with the VA that he refuses to go to her. Instead we pay to see a physician outside the VA network. When I explained this to the caregiver, she didn't know how to respond. She told me she would call me back with details on what I needed to do to get the decision re-evaluated. A few days later she called me. She told me that because our application had already been extended (remember the 30 days between the training and the home visit) she could not extend it any farther. Our only choices were to start the process over (and forgo the back payment from our original application date) or complete the process (accepting the Tier 1 decision) and submit an appeal later.
    Of course, this isn't much of a choice, so I told her that it seemed like my only option was to take the Tier 1 and appeal. Now, understand, if I felt like the VA did a thorough examination of our situation, and still felt as though we deserved a Tier 1, I would accept it and be grateful for what we do get. But the fact that the PCP who doesn't know my husband was the person to decide the Tier makes me very suspicious of this programs policies and procedures. It seems like if you have a good relationship with your VA PCP, you have a good chance of getting a higher Tier, regardless of need.

  5. So glad I read this! Thanks for writing it. We have our Home Visit today. I, too, just completed a thorough house organization/cleaning! Ha! I'll be interested to see how this goes.

  6. We just found out about this program several days ago and I just printed and filled out the application-mailing it off today. Keeping my fingers crossed for a positive experience with this program. It does help to read what others have been through - both positive and negative. Thanks for posting.

  7. Hello everyone here's my nightmare concerning the caregivers program. I was in the program going on 7 months until I had to change my primary caregiver my caregiver coordinator told me I had to reapply even though she could not explain why but told me she didn't know how to revoke my primary caregivers orders( all she had to do was look in Public Law 111-163) because I was the first veteran to request this action anyway I received a letter stating I did not meet the requirements so they put me out of the program after getting put out of the army on a medical right now I did an appeal and have been denied for the second time and I'm on my 3rd appeal and I will do a congressional as well its truly ashame how I fought and served my country as a single parent and have to fight the VA to put me back in a program they kicked me out of so everyone that works for the VA don't care about us especially about giving us what's do to us it seems that they are jealous or mad and dont want us to get what is do to us it's like being in the military its not what you know its who you know I encourage every veteran to keep fighting even if they tell you no the Va treats you like you are a pow you gotta fight to get free so you can get the benefits they say you cant have my advice never change your primary caregiver because if you do change your primary caregiver they will make you start the application all over again just so they can kick you out even though there is no where in VA regulations that you have to start the application over again take my advice and never change your primary caregiver

  8. So I was looking into signing up for the program as my husband suffers from bad PTSD and a TBI. However he is under the impression that the program will take away all of his rights and make him appear like he cannot make any decisions on his own without me...He is also worried that Uncle Sam will come and take away his guns. Is this something to really be concerned about?

  9. I'm in the very beginning stages of this process. I have my first telephone interview next week. My husband is 100% with an unemployable rating. He's severe PTSD and TBI. I am very grateful for a program such as this but do have the same concerns that have been mentioned. Thanks so much for this post. Do you have a facebook page?


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