Here is the latest , for
those interested in
my battle to avoid being
put in a nursing home.
Thanks,
Ivan Suzman
Portland, Maine, PWP 52-39-35
On Wed, 1 May 2002 11:55:02 -0400 "Sue Grant
" <[log in to unmask]> writes:
> I double checked on the policy for your reassessment and, you are
> correct, you only need a reassessment if you are "out" of appeal.
> Tammy did suggest that we make a date (as a contingency plan) and if
> you are still in appeal on that date we will cancel.
>
> So can you block out 9AM on 6/6/02 as a back up plan? Thanks Sue
Dear Sue,
I regret to inform you that I have deep reservations
about your attempting to assess me at this time. Let
me make it clear that this is a policy issue, and not
a matter of disliking you personally.
May I add that it seems that you have never called me to
offer case management services, which you
put aside in favor of using your time to assist me to impose
instead endless repeated reassessments upon me.
I do not see how Alpha One can justify
the endless pressure cooker created by
boiling and re-boiling and then
boiling again the numbers of hours of
need I have, with no reference to the
decisions of the DHS hearing officers, to
the Commissioner of Human Services
orders, or to my own history of suffering
progressive deterioration.
Your comment this morning on the telephone
that ataxia is the same thing as dyskinesia,
which is absolutely erroneous, further increases
my doubts about your ability to assess my
needs properly. If you are as unfamiliar as
you are with the motion disorders of Young
Onset Parkinson's Disease, then you may
wish to find a different person to conduct
case management for me. Or , do the
reading and ask the germane questions
that will educate you up to a proper level
to qualify to evaluate my needs, as well
as those of other Young-Onset Parkinson's
Disease sufferers.
It seems to me that Alpha One risks
being in violation of state and federal
statutes and rules by pressuring me for
a reassessment at this time, when I am
still in the early stages of this
fourth back-to-back appeal process,
that began in October, 2000.
It does not seem fair or reasonable to
reassess me over and over again,
and each time, ignore Mr.
Concannon's decisions
about my eligibility for weekly PCA
services.
My eligibility for a total of 105 hours, that is,
91 hours + 14 night attendant
hours, which extends back 4 years,
to 1998., should , in my humble opinion,
be reviewed only in terms of my being eligible
for more hours, not less, inasmuch as I can
therefore remain empowered in the community
to be independent, in the face of a truly
terrible disease.
Please send me an exact copies of the
text of the federal regulation and of the
appropriate state rule which
you or your manager now uses
to request yet another assessment.
Also please explain the basis for requesting an
assessment at this time. Reassessment
immediately after appeals proceedings
is an obvious reflection of Alpha One's
intent to ignore due process: it suggests
that Alpha One is targeting me in particular
for unduly burdensome repetition of
the assessment process, with no obvious respect for
the decisions that are made at the highest level
of government.
Sue, I am sure you do recall that just five
months ago, in December, 2001,when we met for the first time,
when you came to assess me at home after the previous
12-month appeals ordeal had barely concluded,
you admitted to me that you were relieved to
discover, once you acknowledged
that based on orders from above,
you were going to assess me for
63 hours, regardless of need, without having ever met
me, that I was so extremely upset with any plan
to assess me within the 63-hour limit that I
could not allow you to assess me that morning.
I am certain you recall that you told me, and my PCA
on duty at that time, when I said that there
is no point in assessing me to a limit that cannot meet needs,
that I had "made your day," and you could use the time to go
to a few personal errands instead, and that you
"really did not want to assess me" anyway, with those imposed
PCA weekly hours restrictions. My PCA tells
me she recalls your saying that you could
squeeze in some shopping instead, while
using the hours for the postponed assessment.
Whosoever comes to assess me should
know that four years of this assessment
process has made me highly doubt whether
Alpha One can send anyone to assess me
appropriately and without prejudice, who is
also familiar with Young Onset Parkinson's
DIsease in particular.
I look forward to your response to the detailed
concerns that I have highlighted in this letter.
Until my questions are properly answered, I
respectfully submit to you that any date for
reassessment is premature and inappropriate.
Sincerely yours,
Ivan Suzman
Volunteer Legislative Liaison,
Maine Chapter,
American Parkinson's Disease Association;
Patient-Advocate, Parkinson's Acton Network;
Michael J. Fox Foundation patient-advocate;
Member, Parkinson's International Exchange Network
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