Date:Wed, 4 Jun 2003 00:20:42 -0400Reply-To:John Pistorius <johntheone@NETZERO.COM> (changed to jp@pabia.org)From:John Pistorius <johntheone@NETZERO.COM>Subject:June 3,
2003 PABIA Meeting praise and comments and upcoming meeting infoContent-Type:multipart/alternative;
Hello Folks: Kudos to Ed Crinnion! He outdid himself tonight.
It seems as if he has no limit to his selflessness. He set the
meeting up (almost) on time. He supplied the snacks and drinks out
of his own pocket and provided us with the video presentation that
he spent his own money to purchase. And he didn't even put out the
donation bottle. This guy needs and deserves a big thank you!
Please. . .everyone that was present tonight, drop him a note of
thanks at evc@pabia.org. We owe him a debt of gratitude. He
continues to go above and beyond the call of duty! Tonight, Ed
agreed to have Malin Lowenadler-Shadel facilitate the next meeting
of the Pittsburgh Area Brain Injury Alliance. And I have it on
good authority from Malin, that the next meeting of the PABIA
support group will be an action-packed presentation full of
powerful, TBI relevant information. Malin has promised (and I am
not at liberty to discuss) a nationally renowned, charismatic
speaker who will deliver an important message regarding
information of consequential significance to every citizen of the
Commonwealth of Pennsylvania! How is that for giving you what you
ask for and more from a "Peer Support" group? Do not let the date
of our next meeting slip your mind! If you do, I promise you that
you will miss an event that could impact your life and the lives
of people you know for years to come. It really is that important!
If you have any questions, please contact me at jp@pabia.org, and
I'll be pleased to respond as quickly as possible. But I must warn
you, this upcoming meeting is one that you do not want to miss! SO
BE THERE! Yours in service, John Pistorius
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Sorry for the late notice folks. This one just came past my
desk. I took it out of the original attachment and included it for
you within this note. John Pennsylvania Rehabilitation Council
1902 Market Street Camp Hill, PA 17011 voice (717) 975-2004 or
(888) 250-5175 tty (877) 827-9974 fax (888) 524-9282 email
racucpca@parac.org www.parac.org Pennsylvania Rehabilitation
Council (PaRC) Public Forum To: Persons interested in Vocational
Rehabilitation Services for Pennsylvanians with Disabilities Re:
Invitation to participate in a Public Forum When: Tuesday, June
10, 2003 - 6:00p.m until 8:00p.m. Where Pittsburgh/Allegheny
County Team PACareerLink 425 Sixth Avenue Assessment Room - 21st
floor Pittsburgh, PA 15219 Phone: (412) 552 - 7100 Why: The PaRC
is sponsoring this Public Forum to listen to your comments about
the delivery of vocational rehabilitation services and to identify
best practices and areas of improvement. This Public Forum will be
conducted in a comfortable atmosphere to ensure open
communication. If you have recently attended or plan to attend an
OVR or BBVS public meeting, you should know that this Forum is
different, and is designed to provide you with an opportunity to
express your individual concerns. We hope your schedule will
permit you to attend. If you are unable to attend yet want to
participate, please send us written comments to the following
questions: · What experiences with vocational rehabilitation
services have worked well for you? · Did those experiences involve
the PA Office of Vocational Rehabilitation and or the Bureau of
Blindness and Visual Services? If so, how? · Were you
satisfied/dissatisfied with the service OVR/BBVS provided to you?
Please explain. · What experiences with vocational rehabilitation
have not worked well for you? · Did those experiences involve OVR/BBVS?
If so, how? · How can the delivery of vocational rehabilitation
services, either through OVR/BBVS or another provider, be
improved? Please send written comments to: PaRC Support Staff 1902
Market Street Camp Hill, PA 17011, or email racucpca@parac.org
Next Steps: After the Forum, your comments will be summarized and
reviewed by the PA Rehabilitation Council and OVR and will assist
in the development of goals and objectives for the State Plan
Attachment. Comments will also be used to identify priorities, to
improve services, and review policies. Directions to
"Pittsburgh/Allegheny County Team PACareerLink" FROM THE WEST
Follow I279 (East) (Penn Lincoln Pkwy) into Pittsburgh. Through
Ft. Pitt Tunnel. Continue onto Liberty Avenue. Bear right onto
Sixth Avenue. Pass Wood Street and Smithfield Street. Regional
Enterprise Tower building is on your left, across from Mellon
Parking Garage (on your right). FROM THE EAST Follow I376 (West)
(Penn Lincoln Pkwy). Continue into Pittsburgh. Exit at ramp to
Grant Street. Continue on Grant Street. Turn left on Sixth Avenue.
Continue past Wm. Penn Place. Building is on your right, across
from Mellon Parking Garage (on your left). FROM THE SOUTH Follow
I279 (East) (Penn Lincoln Pkwy) into Pittsburgh. Through Ft. Pitt
Tunnel. Continue onto Liberty Avenue. Bear right onto Sixth
Avenue. Pass Wood Street and Smithfield Street. Regional
Enterprise Tower building is on your left, across from Mellon
Parking Garage (on your right). FROM THE NORTH Follow I279
(South), bear left onto I579 (South). Bear right onto Bigelow
Blvd. Bear right onto Sixth Avenue. Follow Sixth Avenue past Grant
Street, past Wm. Penn Place. Building is on right, across from
Mellon Parking Garage (on your left) If you get lost call (412)
552-7100 - Have a safe trip!
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Hello Folks: This one is important for everyone including
anyone who has ever known another person who experienced anything
that could be called a disability. Please forward this message to
everyone you believe would be interested. "On May 19th, a group of
people with Down's syndrome and their supporters disrupted the
International Down Syndrome Screening Conference at Regent's
College in London. This is the first time people with Down's
syndrome have made such a protest and is a major new step in the
debate about genetics, eugenics and the rights of disabled people.
As a result of the protest, the conference organizers allowed Anya
Souza to speak from the platform. Ms. Souza, who is a trustee of
the Down Syndrome Association, told the doctors that she opposes
Down's syndrome screening and that people with Down's syndrome are
people not medical problems." (source references supplied below)
In response to the message from which we excerpted the above
quotation, Robert Demichelis of the BIAUSA sent a message out
Wednesday, June 11, 2003 9:11 AM, Subject: I say HURRAY!!! the
emergence of a new group of advocates. This is reminiscent of the
efforts the founding members of the National Survivor's Council
experienced for close to a decade before the NHIF Board finally
acquiesced and recognizes our right to participate... and there
were so many more: Sherrie, Ken, Maureen, Lucy, Jim, Cheryl, Joe,
Theresa, Wayson, Connie, ..... I wonder how the ARC will respond
.... In response to Robert's message, Andrea Williams, longtime,
well known, National Advocate for people with disabilities (and PA
resident) wrote: You are assuming I think that the founders of our
movement are generally known and we are not. I can tell you that
they are still treating our people this way. Except we have token
seats here and there. We are still mostly anonymous and they make
great effort to keep us there. Our work, our time, our efforts,
our words and others taking credit for them. By keeping ourselves
free of heroes of our movement, we have kept ourselves out of the
visibility of the disability community at large. We will not
succeed until we can have and acknowledge among ourselves our
Justin Dart, Bob Kafka, Mark Johnson, Lex Frieden and all the
others who have worked so diligently to make change happen. We
glorify the professionals, give them chairmanships, podiums for
keynote speeches and honors and awards while we talk about the
movers and shakers of our community anonymously. I don't disagree
with acknowledging them, but not to the exclusion of our people.
Sometimes I imagine that we are African American and you get a
clear picture in your mind if you do this, of how they talk about
us and we are not doing the talking. Can you imagine where the
civil rights movement would be if the people who were not African
American were sitting at the head of boards, advisory boards and
the services and talking about them? I don't care how clever the
presentation. It doesn't work. Here in America we track disability
as if it is a disease and we have legislation on the books to
further this effort as well. Here in PA many of the people are
still calling themselves the "brain injured" and the emails go out
reading that way. It is horrifying to me. And too, here in PA,
where at one time three Vice Presidents of the NHIF and eventually
a Chair of the Board emerged from our movement, we have regressed
and are still being looked at, surveyed and deciding what more
services they can design around us. We need the right services,
not more. We know what we need to know. We need to take action. No
one can seem to figure out that "noncompliant" means that it is an
outcome the individual does not agree with and that is why they do
not participate. There are efforts that they do not support and so
they do not join in to support it. They label them for that too.
They are still trying to fix us and support our families Robert.
But unless and until, those who have been making themselves famous
and making their living off of our situations can at least share
their podiums and spotlights (the higher good would be to turn it
over) we will have to make our changes via other avenues. I say
hats off to these folks, at least they responded. We never got
that luxury, and more often than not, still don't. A lot has
changed in some ways, more has not changed. We need community
support, full wrap around services, the right to attendant care,
housing, self determination and the right to mental health
services for the inevitable emotional struggle that brain injury
dumps on a person. Our people are still in institutions. Our
people are still being kept from the monies and services that are
available - the kind that make you independent and a participating
member of ones community. We need access to the technology to
level the playing field. We have come a long way. We have much
further to go. I don't disagree with professionals having the
right to promote their agendas, but not while saying that you are
an organization that represents people with brain injury. Other
disability organizations know the difference between a
representative organization and a participant organization. We do
not. We need to wake up and smell the roses. Operation:
Empowerment happened in 1989, where have we come since the few
years of gain that surrounded that event? And were our people
given the podium to discuss this? No. Were our people
acknowledged? No. They wrote about us like we were a science
experiment. It is time to join forces again and move forward and
create with us a new generation of empowered leaders. We are
overdue. Are you ready to participate in that? Hats off to Anya
and hats off to the participants who turned over the mike. Until
there is justice for all, Andrea (reprinted with permission from
the author) > > > > > > ----- Original Message ----- > > From:
"Robert Demichelis" > > Sent: Wednesday, June 11, 2003 9:11 AM > >
Subject: I say HURRAY!!! the emergence of a new group of advocate
> > > > > > > This is reminiscent of the efforts the founding
members of the National > > > Survivor's Council experienced for
close to a decade before the NHIF > Board > > > finally acquiesced
and recognizes our right to participate... and there > > were > >
> so many more: Sherrie, Ken, Maureen, Lucy, Jim, Cheryl, Joe,
Theresa, > > > Wayson, Connie, ..... > > > I wonder how the ARC
will respond .... > > > > > > source: transition digest: June 10,
2003 > > > > > > > > > Subject: Woman with Down's syndrome tells
doctors: "I am a person not a > > > disease." > > > From: "John G.
Reiss" > > > Date: Tue, 10 Jun 2003 08:18:30 -0400 > > >
X-Message-Number: 1 > > > > > > People With Down's Syndrome
Disrupt Screening Conference > > > Woman with Down's syndrome
tells doctors: "I am a person not a disease." > > > > > > On May
19th, a group of people with Down's syndrome and their supporters
> > > disrupted the International Down Syndrome Screening
Conference at > Regent's > > > College in London. This is the
first time people with Down's syndrome > have > > > made such a
protest and is a major new step in the debate about > genetics, >
> > eugenics and the rights of disabled people. As a result of the
protest, > > the > > > conference organisers allowed Anya Souza to
speak from the platform. Ms. > > > Souza, who is a trustee of the
Down Syndrome Association, told the > doctors > > > that she
opposes Down's syndrome screening and that people with Down's > >
> syndrome are people not medical problems. > > > > > > The
protesters consisted of three people with Down's syndrome, another
> > > disabled person with learning disabilities and their
families and > > > supporters. They had written to the conference
organisers in advance and > > > asked to speak, but were refused
by the main organiser, Professor Howard > > > Cuckle. It is
unacceptable that doctors discuss better ways of > preventing > >
> people with Down's syndrome being born, whilst excluding their
voices > from > > > the debate. This runs directly counter to one
of the main demands of > > > disabled people: Nothing about us
without us. The protesters expect that > > > their action will
persuade the conference organisers to ensure a full > > debate > >
> at next years conference with proper representation of disabled
people > > with > > > learning difficulties. > > > > > > In her
speech, entitled Everything you ever wanted to know about Down's >
> > syndrome...but never bothered to ask, Anya Souza said: "I
can't get rid > of > > > my Down's syndrome. But you can't get rid
of my happiness. You can't get > > rid > > > of the happiness I
give others either. It's doctors like you that want > to > > >
test pregnant women and stop people like me being born." > > > > >
> "Together with my family and friends I have fought to prevent my
> > separation > > > from normal society. I have fought for my
rights. I have the right to a > > job, > > > to services when
necessary, to a decent standard of living, to know > about > > my
> > > medical problems, to speak my mind, to make choices about my
friends, > > > whether to have sex, and so on." > > > > > > "To do
this you have to be independent when you grow up and not get > > >
separated from society. I may have Down's syndrome, but I am a
person > > > first." > > > > > > Kitty Gilbert, who also has
Down's syndrome, said: "I enjoyed watching > the > > > conference
although I was a bit scared of what the conference people > were >
> > saying. I think screening pregnant mothers with Down's
syndrome babies > is > > > wrong. They are wanting their offspring
to be able to enjoy their world > > > around them and have endless
happiness. I for one gave my mum pride and > > joy > > > and I
will continue to do so. I think that we should be treated fairly >
and > > > equally, not being getting rid off because there is so
much more in life > > > that we can do. We are what we are and ask
our opinion." > > > > > > >From the Down Syndrome Research
Foundation Web site > > >http://dsrf.org/index.cfm?fuseaction=news.main
> > > Robert Demichelis > > > Legislative Liaison (volunteer) > >
> Brain Injury Association of America > > > 105 N. Alfred Street >
> > Alexandria, VA. 22314-3010 > > > Phone: 703-236-6000 ext. 119
> > > Fax: 703-236-6001 > > > Email: rdemichelis@biausa.org > > >
Web: www.biausa.org > > > > > > The contents of this email message
is strictly confidential > > > and is intended for the addressee
only. If you have received > > > this message inadvertently,
please do not read, copy, forward, > > > or in any way use this
document or any files attached. If you > > > are not the intended
recipient please delete this message > > > and any attached files
from your system, and contact me. > > > > > > The Vision of the
Brain Injury Association of America -- A world where > all > > >
preventable brain injuries are prevented, all unpreventable brain
> injuries > > > are minimized and all individuals who have
experienced brain injury > > maximize > > > their quality of life.
The mission -- Creating a better future through > > > brain injury
prevention, research, education and advocacy. Please join > > us.
> > > > > > v Contributions make it possible for BIA to create a
better future > > > through brain injury prevention, research,
education and advocacy. You > > can > > > show your appreciation
for this service by making a gift to BIA at > > >
http://www.biausa.org/Funding.htm. Click "Contributions and
Financial > > > Development" to access our secure server donation
page. We thank you in > > > advance for your commitment to our
mission. Contributions are tax > > > deductible to the extent
permitted by law. > > > > > > > > >
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Hello everyone, This is a friendly reminder about the upcoming
Pittsburgh Area Brain Injury Alliance Support Group meeting.
Remember to mark your calendar. DATE: July 1, 2003 PLACE: 1323
Forbes Avenue, Pittsburgh Near Mercy Hospital and AJ Palumbo
Center ADMISSION: Free PARKING: Free Parking lot adjacent to the
building SPEAKER: Al Condeluci Ph.D., CEO United Cerebral Palsy
Association of the Pittsburgh District, Chairperson of the PA
Dept. of Health Traumatic Brain Injury Advisory Board TOPIC: Goals
Mission and Purpose of The Traumatic Brain Injury Advisory Board
to the Pennsylvania Department of Health. For the month of July,
TBI Advisory Board Chairperson Dr. Al Condeluci, will provide an
overview of the goals, purpose, and mission of the PA Statewide
TBI Advisory Board. Dr. Condeluci is CEO of his organization, UCP
of Pittsburgh, since 1973. UCP has created a family of
corporations. He speaks annually to national and international
audiences reaching some 15,000 people each year. Don't miss this
opportunity to learn more about the goals mission and purpose of
the TBI Advisory Board, by attending the PABIA's July 1st meeting!
Ed Crinnion promises to have an abundance of snacks and sodas.
John
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Hi folks, It came to my attention that I did not include the
time of the meeting in the announcement. The meeting will be held
7 PM - 9 PM. John Pistorius
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For Immediate Release: June 26, 2003 For MARCH information
contact: Marsha Katz 406/544-9504 Nancy Salandra 215/627-7255 Bob
Liston 406/544-5137 For RALLY information contact: Bob Kafka
512/431-4085 MEDIA ADVISORY Who: ADAPT, the national grassroots
disability rights group What: Free Our People March - 144 miles,
"From the Liberty Bell to Capitol Hill" 120 people with
disabilities from across the U.S., many using wheelchairs and
other mobility aids, will begin the march in Philadelphia, to be
joined by an additional 80 people in Baltimore to cover the last
half of the march to Washington, D.C., culminating when a planned
20,000 people gather at the Free Our People Rally on Capitol Hill
to demand passage of MiCASSA so there will be No More Stolen Lives
Where: Beginning with a press conference at the Liberty Bell, in
Philadelphia, PA, through Delaware and Maryland, and ending with
the rally in Washington, D.C. on Capitol Hill When: September
4-17, 2003-day by day Thursday, September 4 10:00 a.m. Press
Conference at Liberty Bell 10.1 miles Market St. to 38th Street,
to Baltimore Ave. (Rte.13) Spending the night in Glenolden, PA
/Delaware County at First Presbyterian Church Friday, September 5
Travel 16.3 miles on Rt. 13 and Business Rte. 13 Spending the
night in Wilmington, DE at Goodwill Saturday, September 6 Travel 9
miles on Rte. 13; Press Conference in Wilmington Sen. Joe Biden
invited Spending the night in Wilmington, DE Sunday, September 7
Travel 11 miles on Rte. 13 Spending the night in Bear, Delaware
Monday, September 8 Travel 10 miles on Rte. 40 Spending the night
in Northeast Maryland at Nazerene Camp Tuesday, September 9 Travel
13 miles on Rte. 40 Spending the night in Harve de Grace, MD
Wednesday, September 10 Travel 12 miles on Rte. 40 Spending the
night in Aberdeen, MD at Estuary Thursday, September 11 Travel
10.8 miles on Rte. 40 Spending the night in Whitemarsh, MD at
Cowenton Friday, September 12 Travel 11.1miles on Rte. 40 Spending
the night in Baltimore, MD at Patterson Park Saturday, September
13 Press Conference Inner Harbor Travel 8.7 miles through Inner
Harbor Spending the night in Halethorpe, MD Sunday, September 14
Travel 7.5 miles on Rte. 1 Spending the night in Jessup, MD
Monday, September 15 Travel 11.8 miles on Rte. 1 Spending the
night in Beltsville, MD at St. John's Episcopal Church Tuesday,
September 16 Travel 10.0 miles on Rte. 1 Rhode Island Ave.
Spending the night in Washington, D.C. at Israel Baptist Church
Wednesday, September 17 Travel the last distance to Capitol Hill
Rally and press Conference with up to 20,000 people and Sen.
Harkin, Sen. Specter, Rep Davis, Rep. Shimkus expected Spending
the night in D.C. at Holiday Inn Capitol on C Street Why: Everyday
persons with disabilities and people who are aging have their
lives "stolen" when they are forced into nursing homes by
Medicaid's "institutional bias." Disabled and older Americans,
already at risk for forced institutionalization in nursing homes
due to this institutional bias in Medicaid, are currently at a
sharply increased risk. Budget woes in nearly all states have seen
state legislatures slash state budgets, especially the Medicaid
programs. Because, under Medicaid, states are not allowed to cut
federally mandated services, like nursing homes, first on the
budget chopping blocks are the so-called "optional" services, like
"home and community based" attendant services and supports. These
"optional" services are the ones that help older and disabled
Americans stay in their own homes rather than be forced into
nursing homes and other institutions. "Optional" services are at
additional risk under the proposed Bush budget, which would cap
the amounts states spend for optional services while maintaining
all currently mandated services (e.g. nursing homes) under
Medicaid. While Congress and the states talk about a program-wide
"fix", there is no guarantee that home and community based
services will be protected, even though every poll on the subject
has overwhelmingly underscored the need and desire for home and
community based long-term care rather than institutionalization in
a nursing home. There is, though, legislation currently in both
houses of Congress that guarantees that disabled and older
Americans would have a real choice in where they receive their
long term care services and supports. That legislation, the
Medicaid Community-based Attendant Services and Supports Act, also
known as MiCASSA, has been introduced several times, is widely
supported by disability and aging groups, and has yet to be
passed. ADAPT's Free Our People March and the Free Our People
Rally are designed to draw the attention needed to pass MiCASSA in
2003. To make a tax deductible donation to the march for food,
water, accessible porta-potties, sunscreen, bug repellant, first
aid items, generators, tents, cots, gas for equipment vans,
personal assistants/attendants, drivers, and lots more, make
checks payable to DIA of PA, Inc.- Free Our People March, 125
South 9th Street, Suite 700, Philadelphia, PA, 19107.
http://www.adapt.org
http://www.freeourpeople.org JOIN US IN WASHINGTON, D.C. FOR
THE FREE OUR PEOPLE RALLY SEPTEMBER 17, 2003 COME WELCOME THE
MARCHERS AS THEY ENTER OUR NATION'S CAPITOL SUPPORT MiCASSA! AND
JOIN THOUSANDS OF OTHER ADVOCATES AS WE CALL FOR DISABILITY RIGHTS
TOGETHER AT THE LARGEST DISABILITY RALLY IN HISTORY! NO MORE
STOLEN LIVES!!! FOR MORE INFORMATION on ADAPT visit our website at
http://www.adapt.org/ NATIONAL ADAPT MAILING LIST - Adapt
MiCASA List
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