I received this personal experience comment from Lee Kramer. He has also posted it on the Yahoo Living with ALS group and on ALSA's advocacy site. It seems he has had a slightly different and in some ways more successful time with the VA.
His comment:
"You must request the home visit or no visit
happens. Monthly visits are still a dream but if you make enough noise it
can happen but there is a time limit and once that limit is reached you must
be recertified for more. Your GP is the one who authorizes med. Renewals,
except for ALS directed meds, Rilutek Lexapro etc., are refilled by your
neurologist. If you are 100% disabled there is no charge. Home health care
for vets with ALS has been fought by me so they supply me with 42 hrs a week
for a CNA
only. VA regulations state; “If one Veteran is supplied a specific service
or benefit, they MUST offer the same service or benefit to ALL veterans”.
If you can find a home health care agency that has a VA contract your
waiting is cut to weeks. Mine took 3 weeks from request to first visit. I
did have to write the VA Director in D.C. to get the fire started. The more
noise the vet makes the better the benefits adjust to their needs."
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1 comment:
Hi, I was CALS to Cale, PALS, dxed 11/04 at Mayos. He was a Korean War Vet. We first used insurance and Medicare before we entered the VA system. One thing I wanted to mention that he went on the Bipap on 8/05 when he first entered the ALS Clinic at Noerhwestern University in Chicago. His FVC was 63 and Medicare paid. When we did enter the VA system he was treated like a king. We live in Western Illinois so we went to the Iowa City Vererans Hospital--a wonderful facility. He was also offerd Home Health help in 10/06-we did not ask. The social worker offered it. At the time he was progressing rapidly and I wanted to be his sole caregiver and I do not regret n ot taking the help but I did appreciate the offer. Thanks for your info, Ginny
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