Today I am sending this letter--hope it helps.....
Mr. and Mrs. Peter C. Flintermann
114 Creekside Lane
Oxford, OH, 45056
Feb.7, 2001
Mr. Kevin Concannon, Commissioner
Dept. of Human Services
221 State Street
State House Station 11
Augusta, Maine 04333 USA
Dear Mr. Concannon,
We are writing to you because of our concern about the new reduction in rate of pay for caregivers of the disabled in Maine. Although we live in Ohio, we feel this is something which affects all of us in the disabled community.
My husband has had Parkinsons disease for nearly 12 years, and we communicate with Parkinsonians all over the world by email. I also started a separate list for their caregivers 4 years ago. Thus we are well-acquainted with the needs of this community, wherever they may live, in addition to our own personal experience.
As it happens, my husband does have a loving spouse and enough income to meet the need for a paid helper to relieve me at times. We pay her $7.00 per hour, and the rate for a care aide through an agency is at least double that. No wonder we were horrified to learn that Maine is now paying $0.93 per hour to aides who assist persons in the Medicaid waiver program. (This is based on the pay proposal which would cut the pay for the entire night shift for an aide 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 ) In Ohio the rate is an average of $ 8.50, minimum $7.50, maximum $ 10.00 per hour. Medicaid pays the agency $23.00 the first hour and $ 14.50 thereafter for
a single day. I do not understand how you the state of Maine expects to find competent, dependable people who will work for an amount which is so much below even minimum wage.
I should say that we are acquainted through the Parkinson community and email list with Mr. Ivan Suzman, and are aware of the controversy around the reduction in care hours which is proposed in his case. While this affects all low-income handicapped persons, we have a particular concern for Mr. Suzman, because of his circumstances.
It may be difficult for personnel in your bureaucracy to understand how a person can be able to drive, be active, and function apparently well one hour, and then be frozen and helpless in the next. I can assure you that this is typical for Parkinsonians who have had this terrible disease for many years--it is true for my husband, who fortunately has a loving family member to depend on as Mr. Suzman and countless others do not. It is also true that each victim of Parkinsons experiences it differently--different degrees of each symptom, different medications and responses to them. This disease affects people from head to toe, in all body system, as it progresses. Believe me, not all Parkinsonians are Michael J. Fox !
Please use your influence to see that there is better understanding of our situation, and that individuals like Mr. Suzman are not penalized because of a lack of understanding. It would surely cost the state of Maine less to provide appropriate care for him in his own home than to force him into a nursing home at the age of 51, a totally inappropriate solution and one in which the expense would be much greater.
Thank you for your consideration of this situation. Please feel free to contact me if anything I have written is unclear.
Sincerely,
Camilla H. Flintermann
email: flintepc@xxxxxxxxxx
Camilla Flintermann, CG for Peter 82/70/55 Oxford, Ohio
<flintepc@xxxxxxxxxx>
on the web at http://members.tripod.lycos.nl/genugten/flinterm.htm
and also at http://www.geocities.com/camillahf/index.html
"Ask me about the CARE list for Caregivers of Parkinsonians ! "
And visit the CARE webring at http://www.crosswinds.net/~caregivers/index.html
Parkinsn's Archive Treasures Doctors, students, patients and caregivers find current Parkinson's information such as the Algorithm, Caregivers Handbook, and talks by respected Movement Disorder Specialists.
