Have you contacted your U.S. Representative and asked
him/her to cosponsor H.R. 3995? If yes, have you followed-up?
Contact Tamie with any questions and to receive H.R. 3995
advocacy materials (605-399-1624;
tamie327@hotmail.com)
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VOR Weekly Update and Action Alert
December 28, 2007
HAPPY NEW YEAR!!!
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1. Special Notice to ILLINOIS and NORTH CAROLINA members
2. VISITS, VISITS, VISITS – Help seek H.R. 3995 cosponsors
3. COSPONSOR update – Your visits, calls and letters are making
a difference!
4. Chicago Tribune Editorial: In caring for disabled, families
know best. ” Please send your letter to the editor today!
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1. Special Notice to ILLINOIS and NORTH CAROLINA members
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Recently, VOR member Bill Ryerson, who resides in North Carolina
and whose sister with mental retardation receives services in
Illinois, had the opportunity to visit the Washington, D.C.
offices of EVERY MEMBER of the NORTH CAROLINA and ILLINOIS
(except Rep. Kirk) Congressional Delegation. Bill left VOR’s
information in support of H.R. 3995 in each of these offices,
along with the request that each of these Representatives
cosponsor H.R. 3995.
If you are from NORTH CAROLINA or ILLINOIS, now would be an
excellent time to call, visit or write your U.S. Representative.
Begin your communication by saying, “Recently, VOR member Bill
Ryerson stopped by your Washington, D.C. office. I also support
H.R. 3995 and am contacting you to request that Rep. _______
cosponsor H.R. 3995.”
NOTE: Rep. Brad Miller (D-NC) and Rep. Bob Etheridge (D-NC) ARE
already cosponsors of H.R. 3995. Constituents in these districts
should write to say THANK YOU! (An updated list of cosponsors is
provided below).
To find out who your Rep is in these or any state, visit http://www.congress.org
and type in your zip code in the search window.
If any VOR member would like a copy of the handouts that Bill
used – and many other members are using as they prepare for
District visits in December and January – please contact Tamie
at 605-399-1624 or Tamie327@hotmail.com.
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2. VISITS, VISITS, VISITS – Help seek H.R. 3995 cosponsors
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NOTICE: MEMBERS OF CONGRESS WILL BE HOME NOW THROUGH
MID-JANUARY!!
This is the perfect opportunity for visiting your U.S.
Representative face-to-face and asking him/her to cosponsor H.R.
3995.
VISITS, VISITS, VISITS!
VOR has heard from several VOR members who have already
requested appointments with their U.S. Representatives for the
upcoming Dec/Jan recess. THANK YOU!!
As we have reported, at the end of December and through
mid-January, Members of Congress will be working in their
District offices. Although the exact date of adjournment is not
yet known, Congress seems poised to head home next week
sometime. NOW is the time to request an appointment so that you
can share your support for H.R. 3995 and DIRECTLY ASK HIM/HER TO
COSPONSOR H.R. 3995.
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3. COSPONSOR update – Your visits, calls and letters are making
a difference!
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Here is the latest bi-partisan list of cosponsors. Your visits,
calls and letters can help expand this list to many, many more!
Rep. Charles Boustany, Jr. (D-LA)
Rep. Michael Capuano (D-MA)
Rep. Bob Etheridge (D-NC)
Rep. Charles Gonzales (D-TX)
Rep. John Larson (D-CT)
Rep. Stephen Lynch (D-MA)
Rep. James McGovern (D-MA)
Rep. Brad Miller (D-NC)
Rep. James Moran (D-VA)
Rep. Ron Paul (R-TX)
Rep. Todd Platts (R-PA)
Rep. Christopher Shays (R-CT)
Rep. Carol Shea-Porter (D-NH)
Rep. Tim Walberg (R-MI)
Rep. Lynn Woolsey (D-CA)
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4. Chicago Tribune Editorial: In caring for disabled, families
know best. Please send your Letter to the Editor today!
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CALL TO ACTION: VOR has submitted a Letter to the Editor
and so should you. Send your comments ctc-tribletter@tribune.com
AND perspective@tribune.com. You can submit the same letter to
each email address, for consideration in either the “letters”
and/or “perspectives” opinion sections.
SUMMARY: The following editorial was written by
William Choslovsky, a VOR member and Chicago lawyer who
represents Misericordia, a private ICF/MR in Chicago, Illinois,
pro bono. His sister, Stacie, is a longtime Misericordia
resident. His editorial supports the right of individual and
family/guardian choice, “Expanding choice for some in the
disabled community should not come at the expense of eliminating
it for others. When it comes to caring for the disabled, one
size does not fit all, and choice should be a two-way street,”
he concludes, noting earlier is in editorial that “[d]iscussing
the [anti-choice] advocates brings to mind a favorite saying:
‘Lord, protect me from my friends.’ Though they say they are for
choice, in many instances, they only want one choice: theirs. In
reality, they do not speak for the entire disability community,
but for a small, vocal subset.” VOR agrees. Individual and
family/guardian choice of residential choice is the cornerstone
of VOR’s Mission and also what is at the heart of H.R. 3995,
introduced by Rep. Barney Frank.
Opinion Editorial: In caring for disabled, families know best
The Chicago Tribune
December 23, 2007
By William Choslovsky
This essay is about a complex and wrenching issue: caring for
the developmentally disabled. At its heart, though, this is a
story about Hazel Shapen and her daughter, Patrice. And it's a
story about Stacie, my 37-year-old profoundly retarded sister.
Patrice and Stacie have a lot in common beyond disabilities that
require care their families cannot provide. They also have loved
ones who want the best for them and who reserve the right to
decide what kind of care that is.
Until her recent death from cancer, Hazel Shapen was the
fiercest advocate her daughter could hope for. Yet I will never
forget how Hazel began our first conversation: "Who knew I was a
terrible mother?"
Hazel's voice reflected equal parts sadness, sarcasm and
resignation. Part of that came from the challenge of raising
Patrice, who was born deaf and severely retarded 50 years ago.
But part of Hazel's pain came from having to defend herself and
the place that Patrice has called home for half her life: Howe
Developmental Center, a state-run facility in Tinley Park that
cares for about 350 residents, most of whom have multiple
disabilities.
I called Hazel after reading stories calling for the closing of
Howe, which has been fined for safety violations. According to
some disability "advocates," 11 residents have died at Howe
under "questionable circumstances" since 2005.
The so-called advocates are clear: "It is time to close Howe. It
is time to prepare a plan to close all state institutions in
Illinois," says Tony Paulauski, who runs the disability group
The Arc of Illinois.
Other advocacy groups, such as Equip for Equality, which
receives millions of taxpayer dollars, seek to close not only
state-run facilities, but also large private facilities. Their
own literature says as much. Essentially, these advocates assert
that big is bad.
'The spin game'
No doubt, the advocates have won the spin game. They claim
disabled people should live "integrated" in the "community," not
"segregated" in "institutions."
But as Hazel noted, Patrice, who functions at a 5-year-old's
level, thrives at Howe.
"She is more involved in her community than anyone else I know,"
said Hazel, who surveyed other facilities for Patrice -- some
big and some small -- and determined "there is no better place
for her."
Until Hazel's cancer ate away at her, she would bring Patrice
back to their modest home in Chicago Heights every weekend. "But
come Sunday, she can't wait to go back," Hazel said.
Hazel's disdain for the advocates was clear: "None has ever met
Patrice, and I suspect most have never even been to Howe."
Howe's residents include some of the most disabled and
vulnerable individuals you will ever see. Many are so disabled
they cannot eat, dress or use the bathroom without assistance,
and many require round-the- clock care and medical attention.
Each has unique needs.
But what about those 11 deaths at Howe?
Hazel was familiar with the deaths and by no means an apologist
for substandard care. "But understand," she said, "Howe's
population is fragile and unique. Some residents are now in
their 80s, and some deaths are natural. Almost all will outlive
their predicted life expectancies."
Caring for Stacie
This story is personal for me because of Stacie, who is the
youngest in our family. Stacie was born with a part of her brain
missing. She has seizures, can't walk now and functions at about
a 1-year-old's level.
"A fluke" is how my father, a soft-spoken physician, explained
it to us as kids. Suffice it to say, Stacie needs constant care.
We all knew the day would come when we could no longer take care
of Stacie's special needs. As the older kids headed off to
college, my parents searched everywhere for a place suitable for
Stacie. Fortunately, they found it right here in Chicago, at
Misericordia, our blessing.
If the advocates point to Howe as the poster child for closing
large facilities, then they run from Misericordia.
Misericordia is home, in the truest sense of the word, for 550
residents. It has a waiting list that is even longer than its
list of residents for one reason: "It's simply the best," said
Dan Para, whose 27-year-old son, Dan, has been waiting for a
spot for 10 years.
A full spectrum of care
Run by the legendary Sister Rosemary Connelly for almost 40
years, Misericordia provides the full spectrum of care at its
North Side campus.
For its lowest-level functioning residents, many of whom are
intubated, it has a skilled nursing facility. At the other end
of the spectrum, it has a modern apartment building for
high-level, semi-independent residents. It also has facilities
for everyone in between, such as our Stacie.
For its most independent residents, Misericordia even has six
off-campus homes in the surrounding neighborhood, where the
residents live family-style with supervision.
The advocates seek more of these homes, called community
integrated living arrangements, or CILAs. Some advocates are so
militant, they state that all disabled people -- even Stacie --
could and should live in a CILA.
But a CILA cannot provide all the care, staff, support, programs
and facilities that Stacie needs and gets at Misericordia. Put
simply, Stacie's quality of life would be worse in a CILA.
The suggestion that Stacie should be in a CILA is not only
wrong, it is insulting. Do the advocates know better than us,
Stacie's family, what is best for her?
Discussing the advocates brings to mind a favorite saying:
"Lord, protect me from my friends." Though they say they are for
choice, in many instances, they only want one choice: theirs. In
reality, they do not speak for the entire disability community,
but for a small, vocal subset.
Lawsuit creates controversy
In 2005, the advocates -- including Equip, Access Living and the
American Civil Liberties Union -- filed a federal class-action
lawsuit against the state, accusing it of forcing disabled
people into large, private "isolating institutions that deprive
them of basic liberties."
In doing so, they painted with a broad brush and alleged that
all residents at facilities with more than eight beds
"experience unnecessary regression, deterioration, isolation and
segregation."
No surprise: The suit, which is ongoing, has generated
controversy.
The elephant in the room is that the disability pie is only so
big. The state is strapped for cash. In this situation, the
advocates can make for strange bedfellows with politicians and
agency heads who are looking to save money.
Rather than seeking to make the pie bigger for all, too many
advocates seek to grab pieces of the small pie. Too often it's
about turf or dogma, not quality of care.
The advocates are quick to note that Illinois ranks 49th among
states in placing people with developmental disabilities in the
community, meaning CILAs. In response, Para says, "So what? My
son has been waiting 10 years for a place like Misericordia. I
don't care how big it is, I care how good it is."
As Sister Connelly says, "Big can be bad. Small can be bad. Both
can also be good."
"Don't let labels fool you. Our campus is a community, where our
residents maximize their potential and live integrated lives.
Even our CILA residents use our campus as their anchor. Without
it, they'd actually be more segregated, not integrated, living
in the community," she said.
Good intentions gone bad
The battle over Howe is at a standstill. Whether it should
ultimately be closed, I cannot say. I do know that before
someone insists a facility should be closed, three questions
should be asked.
First, where will the people who live there go? Second, will the
closing improve their quality of life? Third, and perhaps most
important, what do they and their guardians want? Or doesn't
that matter?
California is a good example of good intentions gone awry.
There, advocates pushed for deinstitutionalizing severely
retarded adults in the 1990s. They won, but a follow-up study in
2005 showed that the residents who were moved into the community
-- many against their family's will -- suffered a higher
mortality rate.
Undoubtedly, there should be more living choices for all
disabled people. Just as CILAs are appropriate for some people,
large campus facilities are appropriate for others. It should
not be an either/or proposition. Both are necessary, and neither
should be force-fed to the exclusion of the other.
Expanding choice for some in the disabled community should not
come at the expense of eliminating it for others. When it comes
to caring for the disabled, one size does not fit all, and
choice should be a two-way street.
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Tamie Hopp
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