OK - So what's been going on with us... well, I'm taking on the retched woman at the VA that holds the title of Caregiver Coordinator. Let's just say I have a plan, and it the pieces are falling beautifully around it.
So back in August 2012 I was physically handed a letter from the CGC (Caregiver Coordinator) that stated that they were revoking my husband's eligibility for the CG Stipend (Caregiver). We jumped through the hoops she told me to and then I appealed. I bypassed this woman and went through the Patient Advocate (we like her) to have it submitted directly to the VISN (Veterans Integrated Service Network - It's basically the district)... it was denied.
So how did this get to this point? For the most part I will tell you at the end, but essentially the doctor went from rating my husband that he needed a CG to absolutely NOTHING was wrong with him (someone forgot to give me the memo, and tell Richard he was miraculously healed).
I THEN asked for an external review. Ok what does this mean... it means what they SHOULD HAVE done was not looked at any of my husband's doctors notes and basically conducted their own research into it. So I'm pretty sure you know that is NOT how it went down. They never mailed, called, or showed ANY attempt in contacting my husband... ummm, ya... show we were a bit surprised to get yet ANOTHER denial letter in the mail. OK, so we sat on this trying to figure out the most professional way to take this. In all this time, many things were going on.
The CGC was being herself (which is NOT a good thing to be) and purposefully causing stress to our family. And in our house, stress = episodes. So around October time frame CPS (Child Protective Services) was called and there was a report filed on my husband. Seriously?!?! Ugh. So we packed all three kids in the car, packed in Richard and Koa and off we went. We had nothing to hide, so let's get this over with. Now I want you to know that we got the message on a Friday, and it wouldn't be until MONDAY that we could talk to anyone. How's about a little stress, right? OK, so off we went. They were surprised that Richard was a veteran, and were not aware of this (since they handle veteran's differently). They had my children out playing while they started in on the allegations. Three sentences later I said, "You can stop. I know where the letter came from. Would you like a copy of the original letter written (since it was almost word for word)?" That kind of took them off guard and they asked if I actually had it with me. Of course I did... I knew where this was coming from and was prepared with my "VA bag." So I gave them a copy and waited with my children as they read it. Needless-to-say, they finished reading it, talked to the kids individually for just a few moments, and told us we were done. On the way out I simply asked if on a preliminary note if we were good? She smiled and told us yes. When the case was finally closed we got a letter in the mail... it was dismissed... note because of lack of evidence, but because it was unwarranted (meaning it was a false report).
In December Richard had a dissociative episode causing him to want to hurt himself. After spending almost a week in the mental ward (RIGHT before Christmas), he got to come home (YEAH!!!). A week after his discharge, we had to meet with Mr. Tennessee, a PA (Physician's Assistant) for Psychiatry to make sure all his medications were good. We liked him SO much that we asked him to be his new attending Psychiatrist. We started with a new therapist (Mr. Parker - he ROCKS) and things got better.
We submitted in February a formal letter stating that we wanted to change my husband's PCM (Primary Care Manager - his main doctor) as well as his Psychiatrist. The director of Mental Health actually called us to tell him that the request for Mr. Tennessee had been granted.
The beginning of March I reapplied for the CG Stipend. After leaving several messages the CGC FINALLY called me back (she is notorious for doing that). She proceeded to tell me that my husband's episode in December (which mind you, I have on video) was a "stunt." That's right... she actually said that. So Richard took the phone from me and let her HAVE IT!!! (Good for him). The next day was our final meeting with the PCM at the time. Richard let him have it too. Again - Good for him!!! I kept quite nearly the whole meeting. I want you to know that 2 - 3 times during that final appointment that doctor actually said that he never said that Richard DIDN'T need a caregiver and believes that he does... Ummm... then why did you rate him at a NO for everything? Whatever his opinion didn't matter to us anymore. This was the second time he did something like this to us. After Richard's ORIGINAL VA PCM left to go into Research in Virginia, that's the GREAT Dr. Helmer, that current PCM re rated my husband.
(side note: at this point we are at a tier 1. this is how it breaks down roughly:
Tier 1: 0 - 10 hours a week
Tier 2: 11 - 25 hours a week
Tier 3: 26 - 40 hours a week)
That PCM re rated my husband from his original rating of tier 1 to a tier 3. Now, those that KNOW me... you know how much work Richard can be. I was like cool (secretly I was hoping at least for a tier 2 - but hey this worked). Now, the doctor calls up to the CGC and asks the next step to take. She tells him my husband does not qualify for tier 3 and tells the doctor to change it, which he does. He actually copied and pasted word for word what Dr. Helmer had written. Yup, thanks for the CGC!
So onto the new PCM (we like him too so far) Dr. Ghosh (NASA clinic if anyone wants to know). May 3, 2013. The doctor actually rates Richard at tier 3 AGAIN!!! Lots of witnesses and everything. Yeah! Two weeks later I don't hear anything, so I call. FINALLY the NCM (Nurse Case Manager for the CG Program) calls me and tell me that this is a team decision.... ummm... ya... duh! I know. So I politely tell her that I didn't realize I had to do their job FOR them... so I called the Psychiatrist and asked if he would be willing to do it. He agrees to do it at the next appointment (June 12th). Fantastic! I thought it was cute that the CGC thought she would get somewhere with me sending the NCM after me.
June 12th - Went to therapy with Mr. Parker (we really do like him), then went down to medical records and requested all the documentation from the May 3rd doctor's appointments. Wouldn't you know, that CG Assessment had been retracted. What the heck does THAT mean? Again, we KNEW the CGC had her hand in this. Now if ANYONE thought we were paranoid thinking that the CGC didn't like us... we had some serious proof going on now.
So same day... we went to the appointment with the Psychiatrist (PA). You know, the one where he was going to fill out HIS portion of the information on the (now missing) Assessment. Anyhow all the stress and talk sent Richard into a full blown PTSD episode. Let's just say that half way through the appointment that a "code green" was called on my husband (police and all were called). It ended with a Non-Epileptic Stress Attack (seizure where he loses consciousness). We finished the appointment and off to the Patient Advocate we went.
I'm just going to say I LOVE Michele Farrow (the Patient Advocate). She really IS in the right position for this job. She TRULY cares about the veterans. Anyway, long story short... Chief of Staff of Mental Health was called. She wants the Director of Mental Health to review ALL the information that Michele has, and then she wants to review it as well. Everyone now recognizes that there is a SERIOUS issue and flaw in the system (my personal belief is that the flaw is the CGC).
On Saturday the 22nd I was a part of a Focus Group at the VA about the care of the veterans their. Let's just say that 3 of the people that were there DEFINITELY knew what would be on the agenda that day. I tried to remain as professional as possible, and really enlightened a few people that were misinformed by the CGC on how to rate people. I told them that I not only had READ the bill, but I spoke with one of the writers (Ralph Ibson with the Wounded Warrior Project (WWP)), talked to the Deputy Director of the Stipend in Washington DC (Meg Kabat) as well as the NCM under Meg Kabat (Nancy Dupkee). I had also spoken to SEVERAL CG's across the nation about how their care team meetings ran that made their process successful. The veteran and the caregiver get to be a part of that meeting. Amazing... have the veteran a part of his care. So if any questions needed to be addressed they were right there to answer them, and clarify anything that may need it. Unique idea, huh?
I swore that I WOULD get the stipend back... and then somehow, someway that woman would lose her job. Let's just say that it appears EVERYTHING is going in the right direction. It has been a week since the Chief of Staff and the Director have received all the paperwork (and I'll tell you right now, it is a LOT), and we are just playing the waiting game. I am one of those people that understands that people have other things to do as well... and I am patient. It will all come in time.
So for now I am happy with the way that things are going, and I can go back to being Just the Wife, Just the Mama.
