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
