Congresswoman Gabrielle Giffords staff conducted a webinar on TBI today. Apparently people who had written to the Congresswoman after her injury and expressed brain injury interest were invited to attend (among constituents and whoever else..). The event was held at the Southern Arizona VA where the Veterans Administration has one of their Polytrauma Network sites. The Brain Association of Southern Arizona was represented and the Barrow institute was represented. The webinar was scheduled for two hours, questions and answers were invited by Twitter and email, topics were to be TBI Research, Rehabilitation, Treatment…or somethign to that effect.
I had looked forward to the event in hopes of learning something fabulous and new relative to cognitive rehabilitation therapy…which was addressed by the brain injury association spokesperson and her response was a far cry from the kind of information I had hoped for. There was a vet there who suffered a TBI in Iraq and who is now a student at Univ of Arizona. I felt like he had been trotted out like a poster child of what was possible…when I thought they might more readily have trotted out as a poster child what is typical. If a poster child was even necessary. Which it wasn’t. In a word, I found the whole thing to be underwhelming. Disappointing.
I am not sure what I expected. The information disseminated was pretty high level…and seemed geared toward awareness. It also seemed geared toward highlighting the VA Polytrauma program…which, if you are a TBI sufferer from the Middle East needs no advertisement…the DOD health system pushes you through that when treatment is appropriate. If you are a vet or serviceman who is not in the former class…say a vet who suffers cardiac arrest and an anoxic injury that results from your ischemic heart disease related to AO exposure, you are not so lucky. While the VA MIGHT treat you if your Service Connection is granted while you are still alive OR if your income is low enough to meet their criteria to be eligible for health care, it WON’T be via the Polytrauma system. Which is apparently where the leading edge brain injury treatment is.
It seemed to me that the people who were listening on the web were people who suffered injuries and who are all too painfully aware of the information that was disseminated. As for the Q/A. The media gal from DC who was managing the forum for Gifford’s office seemed to be deeply in love with twitter and therefore the questions that came from Twitter. ( have now dubbed her THE TWIT. She is quite young. ) There were a couple twitter questions, one email question, two audience questions (both of which I am glad were put forth and answered because that poor family was in need of resources and advocacy!!! I wanted to volunteer my services to them and if they were on the East Coast think I would have!) None of my questions were put forth…but I only expected maybe one of them would be. The others, I was sure, would be far too “controversial” for the venue. After listening to the webinar, I realize the problem with them was that they were my usual hard questions. Deep. Pot stirring questions. Not fluffy at all. Yeah. I don’t expect answers…they won’t really want to touch them.
Ultimately, it seemed to me that there was some back patting going on…either in their efforts to engage the VA within the Giffords congressional district, or their advocacy of TBI care at the Congressional level. I suppose some effort is better than none…but this one fell short of even some effort from my perspective. It was fluffy. That’s the best thing I can say. Fluffy. Nice enough…but merely fluff. I reflected on it afterwards, thinking…yeah…annnnd? Now what? I did hear, again, that music therapy is extremely useful in regaining ground where there is language deficit. Since Highmark won’t cover further speech therapy, cognitive therapy at all, and was unwilling to authorize rehab in the first place, I guess I know what they’ll say if I ask them to approve music therapy for Mike. Maybe I can refer them to the panelists on the webinar today. Think it’ll help?
I liken today’s webinar to how books/magazines/newspapers today are written for the average reading level. Which is about 8th grade. I think I have researched so much on my own there is not really much news left for me to glean from forums such as this. Sign me “Jaded” and take this post with a grain of salt. I am sure others felt it was a very helpful forum…I found it lacking in depth and ultimately not very useful. I DO wish I could have Mike treated at a Polytrauma Network Site…and I would choose Southern Arizona’s if I could! The weather is better there than here….and the panelists from the staff were definitely sharp!