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