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Greg, It troubles me tremendously that for whatever reason, I feel like George Orwell's "1984" is reoccurring. IF the money and time that the State of Maine is spending to investigate and challenge me were instead spent on helping people with Parkinson's , we would all probably be enjoying a better quality of life. Does Pennsylvania allow home health care based on being consumer-directed?? On Wed, 3 Jan 2001 08:45:32 -0500 Greg Sterling <[log in to unmask]> writes: > Ivan, > It troubles me to think the government feels it necessary to put you > through this ordeal. If there is anything I can do please let me > know. Why don't they put a video camera on you for 24 hrs. to see > what you are really like? > > Greg > 48/35/35 > > ----- Original Message ----- > From: "Ivan M Suzman" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Wednesday, January 03, 2001 12:17 AM > Subject: Re: People's Court drama for PWP today > > > > Dear Mary and PIEN subscribers, > > > > I had two off-periods while called as a Witness , in the Maine DHS > > Hearing Room, before the Court today for 4 hours. Maine is putting > > me through an ordeal that goes on and on, so I am not able to > > get enough time for positive energy to flow and create. > > > > Maine doesn't seem to understand that I am NOT going to give in > > to being stuck away in a nursing home. > > > > The State ,and also the provider of paychecks to my workers, the > ALpha > > One > > Independent Living Center, are trying to chop out 8 hours/day of > my 13 > > daily hours of personal care attendant (PCA) assistance. I have > > had 13 since 1998. > > > > I spent a large amount of time explaining and illustrating the > meaning of > > "off-period" "low period" freezing episode" and dyskinesia > > when I was being cross-examined. I elaborated on how these > different > > states affect PWP's. > > > > Much of my evaluation centered on substantiating my claim > > that I am more disabled than I appear to be when I appear in > public. > > > > I explained what it means to "fine-tune" your medications > > while remaining in conversation with your physician. > > > > I was sworn in, answered questions for my attorney from the > > Disability Rights Center, Paul Tuttle of Lousiana, > > and questioned very hostilely by the Asst, Atty-General Ross. > > > > I said on the record (while being taped) that the 10/20 assessment > > felt like an interrogation and confession forced out of a > > totally innocent and unsuspecting person. > > > > I was shocked when my neurologist's affidavit was invalidated > > andobjected to because it had no date on it (but it was dated > > on the FAX cover sheet), and tossed out; my primary witness's > > affidavit , a social worker's statement about my health > > for the last six months, was excluded because it supposedly > > did not cover the assessment week in October. > > > > I am on consumer-directed Medicaid waiver for the physically > > disabled. > > > > The state's star witness, Ms. Baldwin, interprets the Medicaid > rules, > > sets thelow PCA pay rate and is in charge of my case. > > She does not want me to drive , nor get around town by > > asking PCA's to drive me except to stores for food, banks , ie NO > > recreational, leisure and social activities are acceptable. > > > > My mental health and social well-being is somehow forgotten. > > Ms. Baldwin objects to my asking my PCAfor help to prepare to > > go to synagogue, and she specifically does NOT want me to sing > > in the choir with PCA help. > > > > Otherwise it could be fraud. So she wants me to be > > confined to my house, except for when friends are helping me. > > > > The two opposing attorneys were given 10 days to submit > > written closing arguments about my future. > > > > I am so glad this testifying job is over- at least it seems like > > I will not have to have the case re-opened in front of the Court. > > > > Ivan Mfowethu Suzman > > > > > > On Mon, 1 Jan 2001 09:56:46 -0500 Mary Ann Ryan > <[log in to unmask]> > > writes: > > > > And what happens if I have a freezing > > > > episode in the hearing room? > > > > > > Ivan, a freezing episode just might convince the court. Think > > > about having > > > one. > > > ----- > > > God bless > > > Mary Ann > > > > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) > > Ivan Suzman 51/39/36 [log in to unmask] :-) > > Portland, Maine land of lighthouses deg. F :-) > > > ******************************************************************** > > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 51/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses deg. F :-) ********************************************************************