^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
 Ivan Suzman        51/39/36       [log in to unmask]      :-)
 Portland, Maine    land of lighthouses    +02 CHILLY ICE-BOUND  deg. F
:-)
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Dear PIEN and Caregivers List members:


  It is now almost 08:00 AM on Sunday, February 4, 2001.
I have been trying to type this message , in intervals,  for  nearly
3 hours.

  Friday night,   I had to taxi downtown to Mercy Hospital, and
abandon my PD-adapted home.  I had failed to find overnight
PCA (personal  care attendant)  help,  and I was feeling
nearly exhausted.

  My usual daily PCA care hours ,  paid to the PCA's by
the Maine Medicaid Waiver  for the Physically Disabled
(Consumer- Directed), have been assessed for the only time in 6 years to
be drastically cut,  from 13 hours per day, which I have had since 1998,
 to 5 hours per day.  This is the simultaneous assessment of my needs
by the Maine  Bureau of Elder and Adult Services (BEAS) and  by the
Provider Agency, Alpha One, Incorporated.

This happened October  23, at my home.  It was very, very strange.
Instead of
one assessing nurse, as had always happened annually, there were two.
They had different
forms, and told me that they were assessing me onboth standarads at once.
 One was a
 MED --'94 form, and the other was a tally sheet of the time it takes to
perform
normal daily tasks and body functions.

I was not asked  about  details of  how my  10 different PCA's that I
manage simultaneously, help  me, when needed,  for either  toilet use,
nor  about  the typical level of what PCA
help I need to pass water.  This was so strange, because I sometimes have
to be held steady
while on the commode, and either "peeing or pooping" can take up to 45
minutes.

Most importantly, I was not asked about off-periods, freezing episodes,
or dyskinesia, which take up many hours of each day.  It was as if only
my
very top moments of performance were being written down.  They had little
to say, except that after five hours and 20 minutes, I was said to have
6.71 daily
hours of need, with 0 (ZERO) hours of assistance allowed for the
off-periods, when I am
 definitely completely dependent, and most in need!  I found this to be
weird, and then scary. It was as if there was a pre-planned lowering of
my PCA hours of help, in the works

They said I had to sign a form which actually limited me to only 5 hours
of PCA time per day.  This was a TOTAL shock. As soon as they  left, I
telephoned to the state capital and appealed their decision.  I then had
to rest
 in a painful, deep off-period,  with severely cramped muscles, which had
been building in intensity for four hours.

 The two assessors had come here a week earlier to assess me, but at that
time,
October 16th, the two ladies changed their minds when they found that I
had people in my house when they arrived..
I was told by the BEAS assessor that she needed to assess me alone,
 so they returned a week later for the very uncomfortable  October 23
assessment.

I am appealing the 13 to 5 hours cut, with the legal support of
the Disability Rights Center of Maine.

  UNTIL FEBRUARY  11th,  Mr. Kevin Concannon, the Maine Dept.
of Human Services Commissioner can receive  messages of
concern.  My lawyer has now agreed to allow written messages
of concern to go through to Mr. Concannon.

 His address, if you feel able to write,  is:

 Mr. Kevin Concannon, Commissioner
Dept. of Human Services
221 State Street
State House Station 11
Augusta, Maine 04333 USA
 tel 207 - 287 - 2736

I am 51, diagnosed at  age 39, and my first visible PD
appeared in 1985, at age 36.  For months, I have been virtually unable
to leave my house at all, or even to go outdoors, due to hypothermia
that is part of my Parkinson's symptoms,  and I am much worse off than
in the long and beautiful summer and fall, during which I was assessed.
Unless there is a PCA or a friend to  take me out, I almost always stay
home
in the long, icy winter.

  I was at the Emergency Room at about 11:00 PM at
 Mercy Hospital on Friday night, with nervous exhaustion.  I am
suffering from a perpetual  lack of overnight personal care attendants
(PCA's).
There just isn't enough pay to keep them working at night, unlesss they
are
friends, or unless, as the BEAS assessor told me , I " transfer my 5
daytime hours
to the night PCA, and manage without using up those hours during the
day."
.
  Last night, there were  again no overnight PCA'a found, even from local
agencies,  to fill the doctor's order written for me to have an overnight
PCA,
This physician's written order was made  at about 4:00 PM. Saturday,  by
the on-call neurologist, Dr. Kolkin, covering for my usual and
long-standing
neuro, Dr. Boothby.

 On Friday, I was driven  all over Portland by a  retired senior
volunteer
from the Southern Maine Area Agency on Aging,
 to (1) the Adult Protective division of the Maine Department
of  Human Services ,and to (2))the American Red Cross, and to (3)Catholic
Charities, during the mid- afternoon, in the hope of somehow finding PCA
help.
We were told that no help could be found, at all three places.

 I had also been telephoned by a social worker at Community
 Health Services  agency, having finally gotten written orders
for a social worker from Dr. Boothby, on Thurssday.  I asked him
for PCA overnight help, due to the low pay for PDA's,and how a lack of
coverage affects my independence, and my medical condition.  This was
the ONE encouraging thing that happened all weekend.  He plans to see me
for the
first time at 1 PM on  Monday, at my home.

 Yesterday I was on the phone searching for help for 14 hours, to avoid
re-hospitalization.
My friend Jeff, a friend who gives me emergency time as a PCA, was found
very late,
 He arrived at 10:25 PM. and is here now.

Tonight there are  again no agency PCA's available.  The agency already
called last night at 7:37 to tell me that my doctor's orders will remain
unfilled. I will have to be rehospitalized TODAY.

  The  Maine Department of Human Services has a proposed rule
change from, I believe, two subdivisions under the DHS, the Maine
Bureau of Medical Services, and the Maine Bureau of Elder and Adult
Services.

The BEAS's staff actually are the managers of these  rules.  The
pay proposal would CUT the pay for the entire night shift for a PCA  from
the current$15.00 per night, to either one hour of help at $8.50, or  a
maximum of $17.50 for two hours of work. Many disabled consumers
are extremely concerned that the "night attendant", or overnight
PCA jobs, appear to be scheduled to be either reduced to one hour
or possibly two hours of coverage, or in some cases, eliminated
altogether.

I really am at a loss and am feeling extremely anxious.  I hope that
this letter will touch a few of you in such a way that you might be
able to be helpful.

Thanks so much,

Ivan Suzman
PWP  and  volunteer patient-advocate
in sub-arctic Portland, Maine