Medicaid Managed Care - U.S. Senate Special Committee on Aging

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But unless we get the choice and the consumer protections and
the quality and the outcomes that are promised by managed care,
then all you've got is another track for people with disabilities to
go into and die and disappear.
QUESTION. [Inaudible.] I was wondering what you hope to get out
of today's meeting.
Mr. YOUNG. We wanted to respond to a request from a friend on
the Aging <strong>Committee</strong> and educate as many folks as we could about
our concerns about managed care and to move the process along to
a quality managed care system as quickly as possible.
Ms. LEONARD. I know one of our thoughts was to clearly demonstrate
the need for knowledge of each of the diseases. I think the
common theme across the table is really knowing what it means to
have Alzheimer's disease, what it means to have a mental illnessyour
point about the individual with schizophrenia-and all the
other illnesses that are profiled here.
Probably the most frustrating thing-and I make it a point to
continue being "in the trenches." I am a firm believer as a clinician
and as someone who is very interested in public policy, that I need
to eat, sleep and drink the realities of what happens in Washington
and in Hartford-and part of my frustration and many of my colleagues
is that many decisions are made without the knowledge of
what it really means to have the disease. So if I may speak for myself
and the association, it is to communicate to each and every one
of you that there are people with special needs, and as Susan so
eloquently stated, even within the special needs, there are special
needs.
QUESTION. [Inaudible] and in an effort to make [inaudible] to
bring a great deal of attention to that.
Ms. CHRISTENSEN. Laying the background for additional forums
which will be more policy-oriented than this, describing who are we
talking about.
Mr. MINOR. I simply want to stress two words, and those are
"outcomes" and "accountability." It is extremely important-even
though I speak for people with AIDS and people with hemophilia,
I also deal with almost 15 other inherited genetic disorders, and I
can tell you very strongly that we have not educated people about
outcomes monitoring, and it is a simple tool that lets you know
that you are doing the right things with the best outcomes.
I will make a statement quickly, that the new outcomes to, I
think it is called H-E-D-I-S, HEDIS, I have real concerns with because
it does not cover a lot of things that deal with catastrophic
disease. If you are going to have an outcomes tool, it has got to be
designed with that in mind, because if you don't know what the
benefit is going to be, how do you know the plan? It is very simple-if
you do not understand the outcomes of mental illness or
Alzheimer's or cerebral palsy or whatever, when those things are
not managed properly, then you have no concept of where the
spending is. I emphasize that we look at tunnel vision, seeing that,
hey, this is going to cost us "x" number of dollars today.
An example is for hemophilia, if a patient with hemophilia does
not get Factor on time, it is not just the fact that he did not get
his medicine on time-he now has permanent joint destruction; he
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