New EMAIL address. Change is good?
Date: Wed, 19 Apr 2006 11:32:47 -0500

My email address is changing.  I will stop using the earthlink address
very
soon.

My new email is stephanie.adapt@sbcglobal.net

AND adapt@adapt.org will continue to work for me.  Because that address
and
my current email address point to the same place, you do NOT need to send
stuff to both.

Thanks for your patience ~

Stephanie Thomas

Nashville City Paper, 4/14/06- TENNCARE cuts attack breathing
Date: Fri, 14 Apr 2006 13:08:41 -0500

Meanwhile in PA and elsewhere vent users find folks to help them at home.
What is it with TN?
----- Original Message -----
From: "Lorre Leon Mendelson" <lorreleon@comcast.net>
Sent: Friday, April 14, 2006 11:40 AM
Subject: Please feel free to circulate: Nashville City Paper, 4/14/06-
Paralyzed man's care to continue

> Article on Glen Barnhill:
>
> > Paralyzed man's care to continue
> > By Chris Lewis, clewis@nashvillecitypaper.com
> > April 14, 2006
> >
> > A paralyzed Nashville man on a ventilator who has been living in a
> > hospital
> > intensive care unit since his 24-hour nursing care was cut off at home
> > last
> > week was assured by a judge Thursday that his round-the-clock care
will
> > not
> > be disrupted.
> >
> > Drawing gasps of air through a tube, Glen Barnhill testified in
Davidson
> > County Chancery Court that his life has been an emotional roller
coaster
> > since he found out a month ago his home health care was ending and he
> > might
> > be placed in a nursing home.
> >
> > "There are times I wanted to die because I'm just tired of fighting,"
> > Barnhill told Chancellor Ellen Hobbs Lyle during a hearing.
> >
> > Hobbs Lyle said a temporary restraining order she signed on Monday
remains
> > in effect while she considers ruling on a permanent injunction
requested
> > by
> > Barnhill's attorneys.
> >
> > Hobbs Lyle has ordered that Barnhill must receive round-the-clock care
> > from
> > a nurse or "sitter" to make sure his ventilator is fully functioning
so
> > that
> > he doesn't suffer respiratory failure.
> >
> >
> > BlueCross searching for nurse
> >
> > The order effectively keeps Barnhill in the ICU ward at Vanderbilt
> > Hospital
> > while his managed health organization, BlueCross BlueShield of
Tennessee,
> > tries to find a private duty nurse to provide 24-hour care in his
home.
> >
> > When he was 33 years old, Barnhill, now 46, suffered a gunshot wound
that
> > left him a quadriplegic. He relies on his ventilator to breathe and
must
> > have someone always on hand to replace it if it pops out, which it did
> > during the court hearing.
> >
> > Barnhill appealed to the judge to enable him to return to his
apartment
in
> > Madison, where he has lived the past three years with a private duty
nurse
> > provided by Complete Home Health Inc. of Clarksville.
> >
> > When he was informed on March 8 that Complete was ending his home care
30
> > days later, he became fearful he would have to go back to a nursing
home.
> >
> > "I literally looked at it as probably the end of the road for me," he
> > said.
> >
> > Before he obtained home health care three years ago, Barnhill said he
> > suffered numerous indignities and received inadequate attention during
his
> > five years in a nursing home.
> >
> >
> > 'Experiencing total horror'
> >
> > "I was experiencing total horror, fear and absolute helplessness," he
> > said.
> >
> > His attorney, Linda Narrow McLemore, claims BlueCross BlueShield is
bound
> > by
> > state law to find a home health care agency to provide nursing
services
to
> > care for Barnhill in the home.
> >
> > BlueCross BlueShield case workers have contacted every home health
care
> > agency licensed in the Nashville area to find a private duty nurse for
> > Barnhill to no avail, said Bill Hubbard, an attorney representing
> > BlueCross.
> >
> > Hubbard said it's very difficult to find a nurse trained in ventilator
> > assistance who is willing to take on the risk and liability of
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providing
> > 24-hour nursing care in the home. He said the insurer continues to
cover
> > Barnhill's essential care in the ICU ward.
> >
> > Barnhill's attorneys asked the judge for an injunction that would
ensure
> > that Barnhill is given the treatment he was used to at home.
> >
> > But Hobbs Lyle said she didn't see how she could order the care
providers
> > to
> > do the impossible.
> >
> > "If it's impossible to find anyone to provide the service, he cannot
> > return
> > home because there is no one to take care of him. He's better off in
ICU,"
> > she said.

NDRN and Access Across America
----- Original Message -----
From: Bob Kafka
To: curt.decker@ndrn.org
Cc: Thomas, Stephanie ; Cassie James ; kathy.mcginley@ndrn.org
Sent: Tuesday, April 11, 2006 12:29 PM
Subject: NDRN and ADAPT Access Across America

Dear Mr. Decker:

Though I know that NDRN is a professional organization with highly paid
lobbyists who drive DC policy, it would be refreshing if NDRN folks would
read the eligibility section of AAA (Who is Eligible for AAA) before
trashing a campaign to get more accessible, affordable integrated housing.
ADAPT has always promoted services that are based on need not disability
label.  NDRN is wrong in their assertions about the eligibility for AAA.
It
is for people in nursing home and OTHER INSTITUTIONS.  ADAPT different
then
many DC groups believes that the identity politics and silo funding has
harmed the delivery of disability services in this country and pit
disability groups against each other.
Our efforts in MFP and MiCASSA are just two legislative efforts that prove
our cross disability efforts.  Real Choice grants (a section from MiCASSA)
are also cross-disability promoted by ADAPT.

ADAPT is a non-violent activist disability rights organization and NDRN's
suggestion that our "Wanted" poster might incite violence is totally
offensive.  ADAPT demands that NDRN publicly apologize for this
irresponsible allusion that we are inciting violence.  Yes we are holding
Secretary Jackson accountable for the lack of accessible, affordable,
integrated housing in this country however the "Wanted" campaign is to get
a
meeting not to incite violence.
Highly paid professionals may not like ADAPT's "guerilla theater" but to
make the suggestion that free speech posters incite violence is
outrageous.
After a decade of working together NDRN's slur is particularly offensive.

Again we demand a written apology from the NDRN BOD and you as Executive
Directer.

For an Institution and Barrier Free America,

The ADAPT Community
www.adapt.org

  ----- Original Message -----
  From: Kathy McGinley
  To: Bob Kafka
  Sent: Tuesday, April 11, 2006 11:20 AM
  Subject: FW: NDRN and ADAPT Access Across America

  I had the wrong address the first time I sent this to you.

  We made the decision to send out the message below to our network.   We
believe that the effort is extremely worthwhile - but have major concerns
about the "wanted poster".   Just wanted you to know and not only find out
through the grape vine.

---------------------------------------------------------------------

  From: Kathy McGinley
  Sent: Tuesday, April 11, 2006 11:15 AM
  To: napas_ceo@yahoogroups.com
  Subject: NDRN and ADAPT Access Across America

  This message is FYI.

  ADAPT is beginning a national campaign entitled Access Across America.
An
explanation of the effort is included below.   This is a worthwhile effort
to address a major nationwide problem.  However, NDRN has several concerns
about the campaign that we believe are important to share.

         The first is that it appears targeted almost exclusively at
people
in nursing homes or faced with the danger of a nursing home (see statement
included below).  There are individuals with a range of physical and
mental
disabilities in other institutional settings/or facing the threat of other
institutional settings - the problem is much broader than nursing homes.
Other institutional settings are not mentioned until the section on who
would be eligible for their proposed program.  It would be good if the
focus
could be broadened across the board.

         The second is the "wanted poster" that people are being asked to
distribute (also included below).  There is a concern that this
unintentionally could incite threats or harm to the Secretary.  If the
intended audience is distracted by the tactics used to promote the
message,
the message itself may not be heard.

  ACCESSIBLE, AFFORDABLE INTEGRATED HOUSING

  ACCESS ACROSS AMERICA (AAA)

  SCOPE OF PROBLEM

  Even with the increased availability of Medicaid community-based
services
and supports, people with disabilities are being stopped from relocating
to
housing in the community because they cannot get access to vouchers or
accessible, affordable, and integrated housing options.  This affects all
disabled people who have gone into nursing homes and due to Katrina the
situation has worsened.  There are thousands of disabled and elderly
people

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who were waiting to get out before Katrina and continue to wait.   Many
people have dropped out of transitioning programs, losing hope when they
could not get any assistance to coordinate their Medicaid community-based
services and supports with any real access to affordable, accessible,
integrated housing.

  WHAT IS ACCESS ACROSS AMERICA?

  Access Across America is a proposal to HUD for a national program that
would help people coming out of nursing homes or at risk of going into a
nursing homes because they cannot access affordable, safe, and accessible
housing.  This program coordinates the receipt of subsidized housing
vouchers with Medicaid-eligible persons transitioning out of nursing homes
or at risk of going into a nursing home due to a housing crisis, who are
receiving home and community-based services and supports.

  WHY ACCESS ACROSS AMERICA?

  Directs HUD and HHS/CMS to collaborate, coordinate and improve services
to
low income persons with disabilities, thus ensuring that they can truly
live
in the most integrated setting.

  C       Improve the timing and coordination of affordable, accessible,
integrated housing with the receipt of home and community support
services;

  C       To facilitate the rebalancing of the long term care system;

  C       Implement the goals of the New Freedom Initiative;

  C       Assist states in implementing the Supreme Court's Olmstead
decision.

  WHO IS ELIGIBLE FOR ACCESS ACROSS AMERICA?

  C       Individuals with disabilities and older Americans who are in
nursing homes or other institutions;

  C       Those who have chosen to leave the nursing home or other
institution;

  C       Individuals who will be transitioning from the nursing home or
other institution within the next 60 days or may be forced back into a
nursing home over a housing problem.

  C       Individuals at imminent risk of going into nursing homes or
other
institutions

  HOW WILL ACCESS ACROSS AMERICA BE IMPLEMENTED?

  HUD in coordination with HHS/CMS will work at the state level and local
levels with federally authorized community-based organizations such as
Independent Living Centers and Area Agencies on Aging, to facilitate the
coordination of and implementation of the ACCESS ACROSS AMERICA program.

  For information:  Cassie James, ADAPT, 215/634-2000      www.adapt.org

  Please note organization name change and email change

  Kathleen H. McGinley, Ph.D
  Deputy Executive Director for Public Policy
  National Disability Rights Network
  900 Second Street, NE, Suite 211
  Washington, DC 20002
  202-408-9514 phone, 202-408-9520 fax
  www.ndrn.org

NATIONAL ADAPT MAILING LIST - Adapt MiCASA List http://www.adapt.org

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Difficulty readign all taht right now, especially the small font. I could only see American are there any Canadian particually Ontario Disabilty Rights Advocates, I have found just about everyone there is to find and they all just pass information along like a network or only help other organizations not individual people.

thank you

God Bless

Sunshine

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Not sure if anyone is interested in this topic but it is a mess so thought I would share with whom ever needs to understand this.

Let's Learn Medicare!

Participate in FREE educational web seminars on Medicare issues, presented by the Medicare Rights Center.

Register online at www.medicarerights.org/webinars.html to listen!

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GREAT resources - THANK you!

I also like the term "DiffAbled", may I use it? 

Carmen A.

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