Inconsistent Caregiver Program Causes Frustration and Invisible Wounds are Still Invisible

Invisible wounds have been talked about many times, but why does it seem as though the struggles of those with them are falling on deaf ears?  My husband is a 100% P&T disabled veteran through the VA who also receives SMC (special monthly compensation) due to his wounds.  While most of his are invisible, he does have a few things that are visible though not enough to actually get any attention or concern.  While overall our VA experiences have been pretty decent, we recently have run into a huge issue. 

About a year ago we moved across the country in hopes of my husband receiving better medical care and being back in a familiar place, the area that he grew up in.  At first, everything was going very well.  It seemed like we had a supportive care team and all that jazz.  Recently, however, it seems as though no one wants to read the records from our previous state, and they just don't seem to care at all what former doctors with the same degree's have said.  Not only do I find this incredibly unprofessional, but it's insulting as well to those therapists and doctor's that have previously worked with us. 

Doctor's with text book knowledge  though they may try, if they don't have personal experience or are at least willing to listen to your personal caregiving experience, with some of these conditions  they are only going to see things from one perspective.  It is frustrating attempting to be a successful advocate, when you can't get the care team to understand all that you do.  While making lists of what you do daily may be helpful, it still can be difficult to get your point across. 

Our recent issues specifically stem from the national caregiver program.  While I think the intention of this program is a positive one, the implementation of it is not the greatest.  There seem to be huge inconsistencies from state to state, and the interpretation of the program is left up to each local VA system, as I have yet to hear of it being done the same anywhere. I am at least somewhat happy to know that the folks in DC who run this program are at least aware of the inconsistencies and are working on ways to address the problem. 

I think finding a compassionate and understanding care team is nearly impossible as well. If you have one that is wonderful and listens to your concerns, be very grateful as that is the minority from the stories I have heard.  I sometimes wonder if the provider's experience personal burnout as they are dealing with many veterans and high caseloads.  I do not consider this a valid excuse, though I do wonder what is being done on the VA's end to approach this topic, if anything.  Our Caregiver Coordinator has been horrendous.  Not only did she belittle my husband's concerns, she just didn't care and insisted that they were correct in their assessment.  It seems as though you could potentially find yourself in continuous appeals with this program, as they have the right to re-evaluate your Veteran and their eligibility whenever they want to.    

Release of Information has become our best friend in this nightmare.  Not only do we have the right to know what the providers are saying, it is vital that we do know so that we can make sure things are being done correctly.  Unfortunately in this situation, not only have things been done incorrectly, but the attitude we have been shown has also been highly unprofessional and uncalled for.  We are committed to appealing this recent decision of theirs to lower him from tier 3 to 2, as his TBI and PTSD were never even taken into consideration in the evaluation, nor were we even present when it was filled out by the PCM.  It is sad that getting a correct evaluation with a pleasant demeanor is so difficult to achieve. 

You would think that our Veterans are being treated well, but unfortunately that is often not the case at all.  I have heard many other caregiver's echo that they have not had a positive experience with the caregiver program, I think if the evaluation was more consistent and worded differently and doctors were being trained on how to fill them out correctly, many appeals would never have to happen, and time could be saved.  I am an easy person to work with when you are respectful to me, but there is no reason for the rude attitude that has been shown us and our Veteran's and their caregivers deserve much more than this.  What have your experiences been with the caregiver program?  I am hopeful that others have had a positive experience and been treated fairly. 

I want to add that we are filing formal complaints with our patient advocates, as I am a firm believer that we cannot let this kind of attitude and behavior from VA employee's just slide.  If we don't all start taking a stand, who will?

Thanks for reading!

Anonymous Caregiver to an OIF Vet