Hi Rita, Nancy , Maryhelen Davila, Ken Becker,
Bonnie Rowley and many more:
Somehow I feel like this is a bulletin from the Sahara
to the home front. Here is a"briefing" on my legal
struggle to retain at-home care:
I am a single, 51-year old PWP who is in his 15th year of battle against
YOPD (Young Onset Parkinson's Disease).
I am anxiously awaiting the decision, within 30 days
of January 12, by the Maine Dept. of Human Services
hearings officer Stoodley, on whether I will retain my 13
hours per day of at-home care, or get CUT to 5 hours/day.
I have been at 13 hours/day since 1998. I have been disabled
and receiving SSDI since 1992. Medicaid rules prevent my
going to work. My check is $728.00 per month.
Legal closing arguments were submitted on Friday, by one of the
Assistant
Attorneys-General of Maine, AGAINST my October 23, 2000 Appeal
to retain my home- care hours, plus overnight assistance. If I lose
these home-care hours, my health will be severely damaged.
Attorney Helen Bailey is the Director of Public Policy for the
federally-
funded Disability Rights Center, Maine branch office (DRCME).
I believe there is an equivalent DRC office in all 50 States.
My Appeal was taken by the DRCME under the "least restrictive
environment"
concept. The decision in my case is expected to have far-reaching
implications for the home-care rights of PWP's, and many others.
I called Attorney Bailey on January 6th, and left a taped message
asking for help, after not hearing from any DRCME staff attorney
following being questioned under oath for 3 hours on Tues, Jan 2, 2001.
Bailey stepped in to take over my case on Monday, January 8. I am
now told that staff Attorney Paul Tuttle had left the DRCME on or about
January 5, after filing closing arguments on January 4
for me. Attorney Bailey has filed supplementary closing arguments for me.
I have assessed and annually reassessed as nursing home eligible since
November of 1994.
With home-care, I have remained active in the community, while
living in my PD-adapted home, which is probably one-of-a-kind,
with my two kitty companions, Shadow and Winnie. My qualmy of
life here has been wonderful.
YOPD has increased my needs gradually since 1994.
Numerous times, I have stated that I prefer that I receive care at home,
and remain out in the community, instead of living in an institution.
Unfortunately the October 23 annual home-care needs assessment
assumes me to be
functioning far better than I actually am able. It appears to ignore
my
OFF-PERIODS., where my medicines wear off quickly. Neither State nurse
had any experience with
YOPD. One nurse testified under cross-exasmination that she
did NOT know what an off-period is.
The other State nurse testified that she went to assess me ONLY,
and noone else, during the entire year. She also has set the night-rate
of pay for our care attendants at $15.00 per shift (not per hour).
I have been one of at least 30 disabled persons in Maine who are seeking
a remedy,
because this low pay attracts very few qualified care attendants.
and has led to concerns about how to find personnel that are safe to
hire.
The Maine Civil Liberties Union has sent me a complaint form,
if I wish to sue for the hardships related to and coming from violations
of
my Constitutionlal rights that may have been occurring , once I became
a vocal and visible advocate for similarly disabled people.
THank you all for your wonderful public and
private posts on my "People's Court" experience.
Ivan Suzman
Portland Maine
51/39/36
:-)
On Thu, 11 Jan 2001 11:06:31 EST [log in to unmask] writes:
> Nancy,
> The $129 nursing home care rate is state of MN.
