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desertcat6

New member
Joined
Dec 10, 2011
Messages
9
Reason
PALS
Diagnosis
06/2009
Country
US
State
GEORGIA
City
EVANS
I am very concerned about the type of care our veterans are receiving from the Department of Veterans Affairs (VA), and the lack of clear guidance and policy on the most effective ALS care protocols throughout the VA. Instead of being seen by an accredited multi-discipline care team most veterans with ALS are receiving general care. If you agree sign our petetion at www.change.org/petitions/the-us-sen...ls-care-through-a-multidiscipline-als-clinics .

Study after study indicates that ALS patients fare better under a multidiscipline care team. Key findings of these studies include: Quality of life is maintained and enhanced through the aggressive management of physical and emotional symptoms; Multidiscipline care teams do not change the neurological progression of the disease, but increase the survival of ALS patients regardless of their initial onset; Multidisciplinary clinics optimize health care delivery and prolong survival; Only comprehensive multidisciplinary care can effectively improve overall quality of life from diagnosis to death; and Cost of multidiscipline care teams is essentially the same as general care.

Due to the quality of care and tangible benefits of accredited multidiscipline care, many veterans with ALS chose to attend a non-VA ALS Clinic using MEDICARE and/or private health care insurance. VA neurologists are telling veterans with ALS to attend non-VA ALS clinics since it is virtually impossible to get the VA to fund this type of accredited multi-discipline care. The VA claims they can provide the same care through multiple appointments via general care which negates the benefits of a multi-discipline care team clinic approach.

Veterans diagnosed with ALS are considered service connected regardless of when or where they served in the military as of September 23, 2008. Since this change, the VA has not published or developed guidance on the care of veterans with ALS. VA Hospitals have been left on their own to develop care strategies for ALS patients. Most rely on general care, but a few have established a multidiscipline care team approach utilizing their Spinal Cord Injury Unit resources. Others have established joint ALS multidiscipline care teams by partnering with accredited fee based medical facilities. At best, this approach only benefits a few veterans.
 
I read an article about agent orange and the attempted cover up and denial of veterans for compensation. in my opionion the reason they made als a military related illness is too avoid the rehap of millions of gallons of chemical exposure conflicted in ww1, ww2 and vietnam that they claimed to be harmess as well as experimental vaccines they deem nessessary distributed to troops in deployment. chemical exposure is rated # 1 most likey cause of this disease. Maybe they dont want you to get the help you need to survive to long enough to create awareness. I dont know just a thought. Conspiracy theory. My dad has als and va hasnt helped much as far as medical resources. but on the otherhand they were very prompt in giving 100 % disability immediately after diagnoses, then forced retirement which was a blessing for sure. its happening so fast.......
 
Signed and passed on!
 
I found that it was up to me to manage my husband's care throught the VA. We had a great neurologist that helped me get this done. I did the research and figured out what equipment we needed so he set me up with OT, PT and KT. He gave them what was called a "blank check". This allowed them to order anything we needed, including at home OT and PT. We did the same thing with pulmonology, gastroenterology and nutritionists. Not ideal, but it worked. Our local PVA was of no value. The regional PVA was great, so I worked through them to get SAH, Chapter 35 benefits, etc.

Unfortunately, the MDA in our area is horrible. We have a pitiful MDA clinic in Memphis. It is run by a fabulous neurologist, but that's it. There is no pulmonologist, gastroenterologist, nutritionist, or OT. The PT is outdated. (The restrictions she gave my husband caused frozen shoulders immediately!) The ALSA here is fantastic. Sadly, MDA won't refer PALS to the ALSA! The MDA is also failing to ask PALS if they qualify for VA benefits. It is a tragic situation that arises from greed over donations (in my opinion).
 
Signed and passed on as well!
 
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