 |
 |
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 50/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 37 deg. F :-) ******************************************************************** Dear PIEN friends, DISASTER!! I am fighting a dangerous and vicious decision that endangers my safety at home. Please help me if you can. The Maine Governor , Angus King, can be phoned at 207-287-3531. I am the AUTHOR of his annual PD Awareness Proclamations. Please make him aware that my health and safety are jeopardized . by a decision made yesterday, and scheduled to go into effect on November 1, 2000. My case is stuck in the Bureau of Elder and Adult Services, BEAS, and serviced by a company called Alpha One, Inc. . AO is very closely linked to the George Bush campaign ,and is very biased towards the Republicna party. Although I manage four personal care attendants in a rotation around the clock, and do it perfectly, I am considered an enemy becaused I am a VOCAL patient. THE NURSE ASSESSORS (Betsy Balzano of Alpha One, and Molly Baldwin of the BEAS), put me through a 5-hour and 20 minute non-stop interrogation yesterday, and used information selectively . Their decision is obviously pre=-planned, and in flagrant conflict with reality. THEY CUT 8 HOURS OUT OF MY DAILY CARE PLAN . Balzano and Baldwin are tyring to eliminate 8 of my 13 hrs of home-care allowed during each 24- hour day, leaving me wtih only 5 hours of home-care per day!! . They added that home-care costs will not be covered, that for the first time, I will be forced to pay "co-payments". There is no time allotted for "Off-periods," no time for stand-by assistance when the commode (toileting) is needed, and I am being penalized for wanting to drive. They refuse to assist my independence, do NOT approve of my going to see sick friends in the hospital, refuse to allow as evidence the October 16, 2000 neurologist's letter, which they have ignored. They allot times for everything from putting on a sock to eating supper, and have NO interest in allowing me toi eat at a normal PD pace, which of course is SLOWER. They want my caregivers to vacuum while I am eating, to not sit with me and see what help I need. They are now supposed, to run water and do dishes while I am eating 4 feet away. They do not allow me more that one change of clothes per 24-hour period, despite the sweating I go through..Theu are trying to make my helpers feel like rats on a treadmill.. BUT DO NOT DESPAIR! I have called in to the Bureau to request an appeal. . I have asked for help from the disability rights center and Attorney Helen Bailey has responded. She will look at the nuses; care-cutitng decision, to see if a response can beconstructyed. I will FIGHT FIGHT FIGHT and pray my was through this. Molly Baldwin will lose her job--she wants me to take the 5 hours of my day care, transfer it to night care, and then leave me with no hours at all for day care. She wants me to find a way to say goodbye to Natalie, Julie, Tracy .... THIS IS WHAT HAPPENS TO POOR PEOPLE on the PIEN list who try to get home care and who refuse to leave home. Now maybe some of can understand why RAlph Nader and the Green party are gaining ground. Nader and running - mate Winona ;laDUke , if you take the time to check everything out, recognize that peo0ple like me are silenced and disenfranchised. Ivan Suzman Young Onset Parkinson's patient-advocate