The VA Caregiver Program: Another Red Tape Diary Entry

When the Army called to inform me that my husband might not make it, I couldn't help but think how could I be a 32-year-old widow. When my next call told me my husband was stable but had lost both legs, I was overjoyed. I before did not care any longer what was wrong with him I was only happy he was coming home. I never thought about any issues that would lie ahead, I solely focused on the joy of our family remaining together.

Weeks after my husband was injured my friend, who had become a young widow years before, called to give me her sympathies with an explanation. She said that her husband may be gone, but she has closure. She said I would never be able to heal and have closure because the VA would put nothing but red tape and ignorance in my path. I remember thinking surely not, our service members have been through so much, how can that be? It's crazy how seven years later I realize that call revealed so much truth.

The VA Caregiver Program was created pretty much while we were beginning our wounded journey. Some pretty amazing people, who I have had the honor to befriend over the years, fought so all of our wounded, injured, and ill families could have help. This group knew all of our struggles were permanent. They fought for us to have some much-needed assistance. Assistance that they didn't have with their journey. Help that they knew would make a big difference in the lives of the wounded, injured, and ill.

The beginning of our Caregiver Program journey was simple. Before we left Walter Reed in 2013, we met with the VA, and they explained the program to us. They said Chaz would always be in the program because he would always need a caregiver. They explained his level of need could change, but the program was designed for guys like him. They described a program designed to help me help him. I remember thinking that was fabulous.

Fast forward through the years....we have had a ton of coordinators, but luckily only two fabulous home health nurses. These two ladies understand our life and have been very supportive. We did have to switch nurses when we moved, but it was a smooth transition. I have only positive words to say about our two nurses. We always look forward to their visits.

Now the coordinator position, that's a different story. I had not had any contact with any coordinator since before our move in 2015. Then magically I received a letter telling me they need to review our case with our coordinator. I had zero problems with this because you should review cases. Things do change. Some people do have improvements. I fully cooperated with the review and even had our civilian records from Chaz's PCM and from PT faxed over before our review phone call.

Then the call started. I was asked to submit my veteran's MEB/PEB file. For those who are not tracking, that is a DOD file that lists all of your servicemember's service-connected related issues so a disability percentage can be determined.  I immediately asked why is the VA asking for a DOD file? She said it was for their review. I countered with that document is five years old, you should only need the last 6-12 months of medical files. She then asked if I could "just fax it over." I told her no I would not because she did not need it, she has the VA file explaining my veteran's injuries, and that my veteran's file is like a 100 pages long and the VA only takes 20 pages per fax transmission. She then informed me she found it in her system. However, in my husband's file, it was marked "item not found contact IRM," which is records management.

Next, I was asked, "What is your veteran's relationship to the children in your home?" I replied with "biological father." I was then told that was not what she was asking, so me being me I said, "Well why don't you just tell me what you want." She then told me the VA needed to know if we had special needs children in our home. I quickly responded with the VA has no need to know that. The interview went on, and some of the questions were spot on, and some were beyond what the VA should be asking.

At one point I was asked if I worked and I said yes, I work when I can. The interviewer said she needed more clarification. I informed her that I work when my veteran is having good days and doesn't need my help. I put him before my work. I went on to tell her I was very fortunate to have clients who understand and support our family.

About a month later, we received a letter letting us know that the CET team, Clinical Evaluation Team, determined Chaz has improved and we were being lowered from Tier 3 to Tier 1. I called and asked for the specific documentation showing where he improved. I was told they compared Chaz's 2018 records to his DOD Med board from 2013. They rescored him according to the new records. I laughed because I knew the lady was clueless. So I set out to write our appeal.

I went through Chaz's records to find out exactly who made the determination. There I found a name, I found her online, and she is with Women's Health at the VA. I am still curious as to why a person specializing in women's health is evaluating the functionality of any veteran. Then I found all five names on the CET. Only one of them has seen Chaz in person, and that was his new PCM we saw in April who didn't like that we use Medicare for Chaz's care. The other four could not pick us out of a lineup. The more I dug, the angrier I got. I realized that the CET simply copied and pasted the notes from Women's Health to support the reduction in Tier level. And worst of all, the home health nurses notes were not acknowledged at all.

We met with Chaz's civilian PCM, who is a fellow veteran. He was outraged and wrote a quite powerful letter. We even sat down and used the VA's scoring chart to rescore Chaz. Together the three of us determined we were definitely a Tier 2 and we could argue for the Tier 3. And if anything at all changes with Chaz's health we were definitely a 3. I then went back through the VA's files and wrote my own letter. Our appeal was 32 pages long. I had more than one VA employee and a few friends tell me it was solid and we should be all good.

The VA response to the appeal was that we spend three days at the VA completing a psych eval and OT assessment. Psych was absolutely fabulous. That team was caring and listened, and the doctor even said it was ridiculous for us to be there because we were doing so well, and that Chaz needed a caregiver for physical needs, not mental. We all agreed that now we have a baseline for Chaz. If something starts happening to his memory or brain function, we now have an evaluation to refer back to for comparison.

OT was a different story. OT was rude when we arrived early. Then when we began, she pointed out that we were there for a "caregiver assessment." Joking, I said yeah we are here to prove he needs help. She scoffed, countered, and informed me that the VA caregiver program was full of fraud and that a double above the knee amputee can live 100% independently for the rest of their life without any help. She told me the legislation that was written was a disaster, and many people who were on the caregiver program had no right to be there in the first place. She then told me I could not be involved in the assessment, even though the VA said I was required to be there, she said I had to sit at least two feet away. I found a chair and sat down and obsevered. She did not read the chart prior to the visit and then didn't understand why Chaz's right arm wouldn't extend. So he went over all of that. Then she had him transfer from his chair to the PT mat and even jumped behind his chair, like I do daily, and made comments about his safety. In her report, she rated him as independent and supported the VA's original finding of Tier 1.

After reading her report, we thought well the VA will come back and say, yup you're a 1. We got the call yesterday...they dropped us entirely from the program. The woman who called Chaz even cried because she was so upset for us. She said the appeals board determined that Chaz was completely independent and has no need for a caregiver. This is effective immediately.

Once I stopped shaking from rage, I posted the decision on Facebook to our friends and fired off a few emails. My poor phone took a beating yesterday. But you know what....we have some AMAZING friends. I had to giggle at many of the comments. My college and our Army friends crafted a few amazing facebook posts. We honestly feel so loved and supported.

It was the Army who gave me the title caregiver. I embraced it, but never let it be my sole identity. Being dropped from the VA Caregiver Program doesn't change my veteran's needs. It won't change the fact that I have to carry legs around for him, load and unload them from our van, and help him put them on at home. It won't change that I have to help him shave, button shirts, and assist with other personal grooming issues. It won't change that at home I have to hold his chair to help him transfer. It won't change that I have to help him in and out of our truck. It won't change that I have to help him sit up in the bed. Or carry his coffee for him, so he doesn't get burned. Or scratch places because his arm won't allow him to reach. Or pick him up off the floor when he falls...I could seriously go on for a very long time. I think you get the idea.

A friend said to me yesterday, "If Chaz doesn't need a caregiver, then who does?" Sure, he doesn't need someone 24/7, but he needs help. Every single day I help him with things that go beyond "spousal duties." Yes, I love my spouse, and I did promise in sickness and in health, but when the VA has a clearly defined clinical benefit we qualify for, we should not have to fight this fight.

This is not a Nashville VA problem, nor a TN problem. Here is a quick list of our friends going through the same thing.

• KY-Double amputee with missing fingers and other injuries, Tier 3 to completely dropped. He was told his wounds don't qualify him for a caregiver. 
• TN-Double amputee was told he graduated from needing help. 
• KY-Triple amputee lowered from 3 to 1
• NC-Severe brain injury was told what his wife did was her "spousal duties."
• MI-Severe brain injury, the VA has him listed for aid and attendance, Caregiver Program stated it was not in the veteran's "best interest to have a caregiver."
• CA-Double amputee dropped citing injuries were not consistent with the veteran needing continuous assistance
• TX-Single amputee was dropped. Veteran was told the spouse was "fulfilling her spousal duties and did not qualify as a caregiver."

Remember this is just the short list. There are caregivers all over our country being kicked out of the caregiver program at a rapid pace. While it's true that the fight for the wounded never ends, this is one fight we should not have to ever fight. If we can prove the veteran needs assistance with clear and precise medical documentation, why is it even being questioned? If you don't have enough common sense to realize a person missing body parts will require some degree of help for the rest of their life, then please come to hang with us for a little bit.

We ask you please consider communicating with your elected representatives and let them know you want to help our veterans and their caregivers.

• To contact your Congressman, click here.
• To contact your Senator, click here. 
• To contact the House Veterans Affairs Committee, click here.
• To contact the Senate Veterans Affairs Committee, click here.  

Together we can fix this for all of our veterans and their caregivers.