When I first became vent-dependant in 1982, my supplier told me
they were required by law to supply two vents to me. One was to be my
primary (bedside) and a backup, that also could be used on my wheelchair.
Every supplier (I've had five) since then has told me the same thing.
I'm not sure whether or not this is a nation-wide regulation, or
perhaps just a State of CA reg. For some reason I think it may be a
Federal reg. My suggestion is for you to contact the Health Care Finance
Adminstration (HCFA). They are the Federal rulemakers, and enforcers,
over the health care system, particularly Medicare. I think they may
also carry weight with HMO's. It sounds like your rights are probably
being violated. Good luck!
Blane
P.S. Your case represents a perfect scenario of typical abuse managed
care (HMO's) subjects persons with disabilities and chronic conditions to
as a regular course of "business." In my opinion, it underscores why it
is crucial for PWD's to oppose managed care at every level. It could
harm, even kill us if we don't get involved in the ever-growing fight
against it. I say, single-payer now!
On Tue, 24 Mar 1998 08:11:28 -0500 (EST) Bob Mauro - PeopleNet
<mauro(AT)idt.net> writes:
>I have been battling with Medicare over my PLV-100s. I have 2. But
>Medicare seems to think I don't need two -- even tho I'm on my vent
>24 hours a day. The problem might be resolved by my pulmonary
>doc's new letter, written in February. But I'm still not sure.
>So I've written to my congress persons. Have you had these
>problems? What have you done about them?
>
>March 23, 1998
>
>Senator Alfonse D'Amato
>7 Penn Plaza
>NY NY 10001
>
>Dear Senator D'Amato:
>
> I had polio in 1951, when I was 5. I was in an iron lung for
>about 6 months. Then, in 1968, Post Polio Syndrome hit me. By
>1970 I had to go back on a respirator. I then had 6 hours of "free
>time," which meant I could be off my vent for up to 6 hours. Over
>the last 28 years, however, that "free time" has diminished to
>about 7 minutes or less! In other words, if my vent breaks, I have
>7 minutes to get to a backup vent. I have one on my motorized
>wheelchair. I have 2 vents now, both are the model PLV-100. As
>a result I have been very productive, writing 5 books. My latest
>book, THE LANDSCAPE OF MY DISABILITY, I have enclosed.
> My problem is my Medicare HMO, Metrahealth, Wilkes-Barre, PA,
>is suddenly refusing to pay for my second ventilator, which is a
>PLV-100. They claim it is not medically necessary! How can that
>be? I cannot breathe without a vent! If one vent breaks, I need
>a backup, which gets me out of bed and acts as my "safety net."
>I no longer have three vents. Just two.
> I have enclosed a letter from my doctor saying my second vent
>is medically necessary! Still, my HMO refuses to cover my second
>PLV-100. What am I to do if I have one vent and it breaks? I can
>barely talk without my vent. If I could call 911, the help would
>not arrive for 15-20 minutes! I'd be dead in 10!
> In February, 1998, my pulmonary doctor, Linga Raju, wrote a
>revised letter, which will go before an Administrative Law Judge
>soon. I do not yet have a copy of Dr. Raju's new letter. But he
>is from Nassau County Medical Center. I am hoping the ALJ will
>reverse the recent telephone fair hearing. I've enclosed a copy
>of that hearing decision.
> I beg you to do something to get my Medicare HMO to cover my
>second vent. These senseless denials of vital medical, life-
>supporting equipment by these Medicare HMOs are extremely stressful
>to me and others like me. It must stop!
> Presently, I have one PLV-100 by my bed. I use that vent when
>I sleep. I have the second PLV-100 on my wheelchair. That second
>PLV-100 gets me out of bed and gives me mobility -- and allows me
>to be a productive member of society. It also is my "safety net,"
>my backup. I need that second PLV-100. It is literally a matter
>of life and death!
> Please, please help me get my Medicare HMO to cover my second
>PLV-100!
>
>Sincerely,
>Robert Mauro
>
>CC: U.S. Senator Al D'Amato, U.S. Rep. Carolyn McCarthy, N.Y. State
>Assembly Woman Kathleen Murray
>
> Bob Mauro, Mauro(AT)Idt.Net
>--------------------------------------------------------------------------
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