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VOR Weekly E-Mail Update
February 22, 2008
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Table of Contents
1. VOR Annual Meeting and Washington Initiative: Join Us!
Register today! Exciting program updates!
2. H.R. 3995 advocacy: We need your help to get cosponsors!
3. 100 organizations call on Congressmen to cosponsor H.R. 3995!
It’s not too late for YOUR organization to sign onto this letter
4. CALLING ALL SPONSORS – we need your help identifying
companies, associations, foundations and individuals that would
like help sponsor the financial costs of VOR’s Annual Meeting
and Washington Initiative
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1. VOR Annual Meeting and Washington Initiative: Join Us!
Register today! Exciting program updates!
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We have some exciting program updates to note:
a. Pilar Falo, Legislative Counsel to Rep. Barney Frank,
has agreed to speak about H.R. 3995 and the legislative process
for moving this legislation through the House, including the
role of advocates.
b. Brenda Lowry, a provider of ICF/MR and nursing
facility care to people with MR/DD, has agreed to moderate a IPP
panel discussion a panel discussion to focus on the legal
(regulatory) requirements regarding the annual IPP process, and
how families can be effective advocates during this process.
Panelists are Dianne Smith, CMS Technical Director and Team
Leader for ICFs/MR; Robin Sims, VOR’s First Vice President; and
Kathleen Miller, a social worker for Sonoma Developmental
Center, where her son is also a resident.
c. HOTEL RESERVATIONS. Same great hotel, new name - A new
toll free number is now available to make hotel reservations.
Beginning April 1, the Holiday Inn on the Hill, the long-time
venue for VOR’s Annual Meeting, will become an Affinia hotel and
will be called the Liaison on Capitol Hill. A new toll free
number for reservations is now available to VOR members
attending the Annual Meeting and Initiative.
Holiday Inn on the Hill / The Liaison on Capitol Hill
866-Affinia (866-233-4642) (toll-free)
202-434-0125 Marcia Hopkins (direct)
415 New Jersey Ave., N.W. Washington, D.C. 20001
Reservations due by May 12, 2008
Group rate: $169 for single or double, plus tax, per night.
Mention VOR for group rate. All meetings will be held at the
Holiday Inn on the Hill / The Liaison on Capitol Hill (an
Affinia hotel). Take advantage of networking with other VOR
members by staying here. Please let us know if you would like to
be paired with a roommate, if possible.
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2. H.R. 3995 advocacy: We need your help to get cosponsors!
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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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3. CALLING ALL SPONSORS – we need your help identifying
companies, associations, foundations and individuals that would
like help sponsor the financial costs of VOR’s Annual Meeting
and Washington Initiative
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This is VOR’s pinnacle event. Help be a part of its success. Be
a sponsor, find a sponsor. Full details are here:
See last year’s sponsors here: http://vor.net/2007sponsors.htm
THANK YOU!!
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4. 100 organizations call on Congressmen to cosponsor H.R.
3995! It’s not too late for YOUR organization to sign onto this
letter
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VOR’s Washington Representative, Larry Innis, recently
hand-delivered the following sign on letter to every U.S.
Representative’s office. The letter in support of H.R. 3995 has
been signed by 100 organizations!
VOR would like to add even more cosponsors before the June
Initiative. If you know of an organization that would like to
join these 100 organizations on this sign on letter, please
contact Tamie at 605-399-1624 or Tamie327@hotmail.com.
SIGN ON LETTER
PLEASE CO-SPONSOR H.R. 3995
a bill to protect the interests of residents of intermediate
care facilities for people with mental retardation (ICFs/MR) in
federally-financed class actions lawsuits
The undersigned national, state and local organizations
representing and advocating for the rights of thousands of
people with mental retardation and their families from across
the country join together in support of H.R. 3995.
Introduced on October 30, 2007 by Rep. Barney Frank (D-MA), H.R.
3995 would require that before federally-financed class action
lawsuits against Medicaid-certified and funded Intermediate Care
Facilities for Persons with Mental Retardation (ICFs/MR) can
proceed, residents and their legal representatives must receive
notice of the proposed class action and be given a time-limited
opportunity to opt out of it.
This bill is desperately needed and supported by families of ICF/MR
residents. It is opposed by the lawyers who bring these suits,
as it would limit their discretion with regard to who they are
allowed to represent. The undersigned organizations, however,
submit that the decision regarding attorney representation
should be made by individuals and their legal guardians, not by
attorneys.
The problem is real.
Federally-funded attorney groups often pursue class action
lawsuits against ICFs/MR, driven primarily by a bias against ICF/MR
care, as evidenced by the number of closures due to these
lawsuits – at least 15 ICFs/MR in 9 states, involving thousands
of individuals with mental retardation (see, http://www.vor.net/classactions.htm).
Families have good reason to be concerned. Closures sometimes
result in tragic outcomes for the former residents (see e.g.,
http://vor.net/abuse_neglect.htm, listing examples of systemic
abuse, neglect and higher death rates in community settings for
people with mental retardation who have been moved out of ICFs/MR
in many states and the District of Columbia).
Families, many of whom are also legal guardians, often object
strongly and expressly object to the lawsuit and its objective
of closure because they are pleased with the care their loved
ones are receiving. Under current law, however, there is no
requirement that legal guardians or residents be notified of a
class action lawsuit and they do not have the right to opt out.
Consequently, many residents of ICFs/MR are swept into these
lawsuits and transferred from ICF/MR settings against their or
their guardians’ wishes (see, http://www.vor.net/FamilyTestimonials.htm).
Legal guardians should make these fundamental decisions, not
federally paid lawyers. Federal law, including the authorizing
language of one federally-funded lawyer group that files class
action lawsuits against ICFs/MR – Protection and Advocacy – also
embraces the policy that individuals and their
families/guardians are the “primary decisionmakers” regarding
the services and supports received. This law – the Developmental
Disabilities Assistance and Bill of Rights Act -- is scheduled
to be reauthorized this year. The timing is right to change the
rules to assure individual and family rights by passing H.R.
3995 (see, DD Act, 42 U.S.C. 42 U.S.C. 15001(c)(3)(2000)).
Please cosponsor H.R. 3995 today. Contact Pilar Falo,
Legislative Counsel to Rep. Barney Frank at 202-225-3581 to
secure your support.
Individuals with mental retardation or, where appointed, their
Legal guardians should make the fundamental decision as to legal
representation, not the federally paid lawyers. That’s just good
common sense.
Thank you in advance for your support.
Sincerely,
ActionDD (WA)
Advocacy Network, Inc. (MA)
Acadiana Region Supports and Services Center Parents
Organization (LA)
Alabama Voice of the Retarded
AFSCME Local 634 (WI)
Altoona – Cresson – Ebensburg Centers Association (PA)
American Health Care Association
American Federation of State, County and Municipal Employees (AFSCME),
AFL-CIO
Area Seven Family Care Council (FL)
Association for the Mentally Retarded at Agnews (CA)
Association of Hunterdon Developmental Center (NJ)
Autism Society of America – Butler County, Inc. (PA)
Autism Society of America – Pittsburg, Inc. (PA)
Autism Society of America – Pennsylvania, Inc.
Autism Society of America – Westmoreland County, Inc. (PA)
Beatrice State Developmental Center Family and Friends
Association (NE)
Billings Fairchild Center (OK)
California Association of Psychiatric Technicians
California Association of State Hospital Parent Councils for the
Retarded (CASHPCR)
Cedar Lake Foundation (KY)
Cedar Lake Lodge, Inc. (KY)
Cedar Lake Residences (KY)
Central Virginia Training Center Families and Friends (VA)
Civitan Club of Fairfax (VA)
Coalition of Families and Friends (MA)
Coalition of Louisiana Supports & Services Centers (For Citizens
with DD), Inc.
Concerned Citizens for the Mentally Retarded (MA)
Concerned Families of Hazelwood ICF/MR (KY)
Conway Human Development Center Parents Association (AR)
The Council on Mental Retardation, Inc. (KY)
Developmental Disabilities Health Alliance, Inc. (NJ)
Dever Association for the Retarded (MA)
Dixon Association for Retarded Citizens (IL)
East Central Georgia Family Council
Families and Friends of Care Facility Residents (AR)
Families and Friends of North Lake Supports & Services
Association (LA)
Families and Friends of Tachachale (FL)
Family & Friends Association of Arizona Training Program at
Coolidge
Family and Friends of Woodward Resource Center (IA)
Fernald League for the Retarded, Inc. (MA)
Florida's Voice on Developmental Disabilities (FL)
Fox Center Families and Friends (IL)
Frances Haddon Morgan Center Families & Guardians (WA)
Frances Haddon Morgan Center (WA)
Friends of Choate (IL)
Friends of Fircrest (WA)
Friends of Jacksonville Developmentally Disabled (IL)
Friends of Retarded Citizens of Connecticut (FORConn)
Glavin Association for the Retarded (MA)
Gray Panthers California
Greater St. Louis Parent’s Advocacy Group (MO)
Hamburg Center Family and Friends Association (PA)
Howe Family and Friends Association (IL)
Illinois League of Advocates for the Developmentally Disabled
Kankakee Association for the Mentally Retarded (IL)
Kansas Neurological Institute Parent and Guardian Group
Lubbock State School Family Association (TX)
Maryland Association of Nonpublic Special Education Facilities
(MD)
Maryland Coalition of Advocates for the Retarded
Massachusetts Coalition of Families and Advocates for the
Retarded
Mental Retardation Association of Nebraska
Mental Retardation Association of North Carolina
Mental Retardation Association of Utah
Misericordia/Heart of Mercy (IL)
Missouri Voice of the Retarded
Murray Parents Association (IL)
National Disability Party
Ohio League for the Mentally Retarded
Oregon Voice of the Retarded
ORI (Opportunities for the Retarded, Inc.) (HI)
Parent Association for the Retarded of Texas
Parent-Relative Organization for Oakwood Facilities, Inc.
(PROOF) (KY)
Parents & Associates of the Institutionalized Retarded of
Virginia
Parents & Associates of Northern Virginia Training Center (VA)
Parents and Friends Association of Selinsgrove Center (PA)
Parents and Friends of Lower Fairfield Regional Center and
Associated Group Homes (CT)
Parents and Friends of Ludeman Center (IL)
Parents and Friends of Monson Developmental Center (MA)
Parents Coordinating Council, Lanterman Developmental Center
(CA)
Parents Planning Programs for the Developmentally Disabled of
Florida, Inc.
Parents, Relatives and Friends of Polk Center (PA)
Parent's Hospital Association, Sonoma Developmental Center (CA)
Patrons of Partlow (AL)
Pennsylvania League of Concerned Families of Retarded Citizens
Pinecrest Parents Association (LA)
Porterville Developmental Center Parents' Group, Inc. (CA)
RBS Consulting (FL)
Relatives and Friends Association of White Haven Center (PA)
Sacramento Association for the Retarded (CA)
South Carolina Parents and Advocates for the Developmentally
Disabled (SC)
St. Mary’s Square Living Center (IL)
Southbury Training School Home & School Association (CT)
Supporters of Residential Choices for the Developmentally
Disabled/DSI Supporters (FL)
Umbrella Services for Advancing Autistic Children (PA)
Valley Association for Retarded Children and Adults (VARCA) (CT)
Washington State Democratic Disabilities Issues Caucus
Waukegan Developmental Center-Association For Retarded Citizens
(IL)
West Tennessee Parent Guardian Association (TN)
Wisconsin Parents Coalition for the Retarded
Wrentham Association for the Retarded (MA)
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Tamie Hopp
REFERRAL/MEMBERSHIP/CONTRIBUTION FORM
THREE EASY WAYS TO SUPPORT VOR > REFER, CONTRIBUTE OR JOIN
THANK YOU FOR YOUR SUPPORT!
TO JOIN OR CONTRIBUTE: $25 per individual, $150 per family
organization, or $200 per provider/professional organization.
Extra donations are welcome!
You may pay by credit card or check.
TO REFER SOMEONE TO VOR: Use the form below, including the
additional sections for referrals.
Mail the completed form (if joining or contributing) with
payment to:
Voice of the Retarded
836 S. Arlington Heights Rd., #351
Elk Grove Village, IL 60007
847-258-5273 fax (for referrals or credit card payments)
kluck146@comcast.net (for referrals or credit card payments)
FOR REFERRALS: ____ The contact information provided is for
someone I think would consider membership with VOR.
FOR REFERRALS: _____ You may use my name in any correspondence
with this individual. My name is ________________________.
____________________________________________
Name
_____________________________________________
Address (if paying by credit card, use billing address). All
forms must include complete address including zip code)
_____________________________________________
City St Zip
_____________________________________________
Phone Fax
_____________________________________________
E-Mail
_________________________________________________
Family/Professional Organization Affiliation (if applicable)
VOR now accepts Master Card and Visa. If paying by credit card,
please provide the following information:
Amount to charge to card:
___$1,000 ___$500 ___$250 ___$150 ___$50 ___$25 $_____ Other
amount
_____ Mastercard
_____ Visa
Card Number: ___________________________________
Expiration Date: __________________________________
Cardholder's Signature: ___________________________
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