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Support meeting between VOR, HHS Secretary Tommy Thompson and
President Bush
Action
Alert
February 19, 2001
Table of Contents
1. Action Alert: Letter
from VOR's Government Affairs Committee
2. Contact information
3. Template letter
4. Voice of the Retarded: Critical Concerns and Related Solutions
1. ACTION ALERT: LETTER FROM TAMIE HOPP
Dear VOR Friends:
This is a request specifically addressed to our VOR members who have
REPUBLICAN Representatives or Senators in Washington, D.C.
The newly elected Administration presents an opportunity to influence the new
Administration's policies as they are being developed.
We would like to assist you in your offers to reach your Republican
Representatives and/or Senators and request that they encourage, with letters of
their own, President Bush and Secretary Thompson to meet with representatives of
VOR. As the leading organization representing families in support of choice in
residential options, VOR must be a voice in the process.
Addresses for House and Senate members, a template letter, and a suggested
enclosure follow. The enclosure is entitled "Voice of the Retarded:
Critical concerns and related solutions" and is also attached in both
WordPerfect and Word format.
You may also visit with your Republican Members of Congress when they are at
home in the District. To find out who your Representative and Senators are,
visit http://www.vor.net (research and resources link).
Thank you in advance for your support. If you need additional information or
assistance in drafting your letters, please feel free to contact me directly.
Please forward any responses you receive to the VOR office.
Sincerely,
Tamie Hopp
Executive Director
P.O. Box 1208
Rapid City, SD 57709-1208
605-399-1624 voice
605-399-1631 fax
vor@compuserve.com
2. CONTACT INFORMATION
Capitol Switchboard: 202-224-3121
The Honorable John Smith
U.S. House of Representatives
Washington, D.C. 20515
Dear Representative Smith:
The Honorable Jane Doe
U.S. Senate
Washington, D.C. 20510
Dear Senator Doe:
3. TEMPLATE LETTER
Date
Address
Dear Senator (or Representative) _________:
I am writing as a [PARENT/SIBLING/FAMILY MEMBER] of [NAME] and as a member of
Voice of the Retarded (VOR). VOR is the leading national organization
representing families of people with mental retardation and is the only national
organization advocating for a full range of residential and support options for
people with mental retardation.
I would like to request your support in helping to arrange a meeting between
VOR representatives and President George W. Bush and Tommy Thompson, Secretary,
U.S. Department of Health and Human Services. A letter from you encouraging a
meeting would be most helpful.
I understand that the new Administration is in the process of identifying its
policies as they relate to disability issues and I feel it is imperative that
representatives of VOR be given the opportunity to offer their unique and
learned perspective. We feel strongly many of our concerns, especially as they
relate to the option of facility-based care, were not fully considered by the
previous Administration. Instead, the previous Administration took actions
designed to narrow the choices available for the care of people with mental
retardation by fostering federally-funded class action litigation against
facilities serving people with mental retardation and misinterpreting the
Supreme Court's Olmstead case. I have enclosed a pertinent document that more
fully expresses my concerns ("Voice of the Retarded: Critical concerns and
related solutions").
These issues of our personal concern to me. [SHARE HERE A BRIEF DESCRIPTION
OF YOUR FAMILY MEMBER - YOUR RELATION TO THEM, WHERE THEY ARE LIVING, WHY THAT
LEVEL OF SUPPORT IS NECESSARY, ETC. BE BRIEF BUT BE SURE TO MAKE CLEAR THE
CONNECTION BETWEEN WHAT VOR DOES NATIONALLY AND THE SERVICES REQUIRED BY YOUR
FAMILY MEMBER IN YOUR STATE].
Representative _______ (or Senator _________), thank you in advance for your
assistance in helping to secure a meeting for VOR with the President Bush and
Secretary Thompson. I look forward to hearing from you soon.
Sincerely,
Name
Address
phone/fax/e-mail
P.S. During the week of June 11, 2001, VOR members will be visiting your
office to further discuss our primary issues of concern. Advance appointments
will be made.
4. VOICE OF THE RETARDED: CRITICAL CONCERNS AND RELATED SOLUTIONS
January 2001
Voice of the Retarded (VOR) is the only national organization advocating for
a full range of residential and support options for people with mental
retardation, including Medicaid-certified Intermediate Care Facilities for the
Mentally Retarded (ICFs/MR) and home and community- based care. VOR has
thousands of members with representation in every state. VOR's membership is
comprised primarily of family members of individuals with severe and profound
mental retardation, and their family organizations. We are not professionals,
but families whose loved ones are directly impacted by often over-reaching
federal agency decisions. This document outlines some of our most pressing
concerns resulting from years of experience with those federal agencies. Critical
Concerns
INCLUSION OF ALL ADVOCATES
Issue: Past Administrations have often failed to include all credible
national organizations, with varying viewpoints, in policymaking forums. A lack
of diverse views does not lend itself to responsible policymaking.
Recommendation: Restore the balance of the policymaking process by seeking
the viewpoints of all credible national disability organizations. All agencies
working on long term care recommendations should seek input from VOR members and
other national disability constituencies.
FEDERALLY-FUNDED CLASS ACTION LITIGATION
Issue: Protection and Advocacy (P&A) programs receive federal funding
from the U.S. Department of Health and Human Services (DHHS). With federal
funds, P&A programs have filed more than 62 class action lawsuits, often
against state entities, on issues including deinstitutionalization, waiting
lists, education rights, foster care concerns and enforcement of the Americans
with Disabilities Act.
Eighteen (18) of these class action lawsuits have been against state-operated
ICFs/MR settings with the express or implied purpose of closure. ICFs/MR are
also funded and certified by DHHS. Thus, P&A class action lawsuits against
ICFs/MR programs amount to HHS funding one of its programs to sue another, often
in cases where DHHS has certified that the ICF/MR being sued meets DHHS imposed
ICFs/MR quality care standards. This is ill-advised policy. Class action
lawsuits against ICFs/MR settings -- under the guise of eradicating abuse and
neglect and often carried out over the objections of the families and guardians
of the residents - - have led to people with severe and profound mental
retardation being isolated from the health and support services they require. As
a result, the lawsuits have sometimes resulted in abuse and even death of the
deinstitutionalized residents, as documented in major newspaper articles, most
notably in California and Washington, D.C.
In response to ongoing concerns by family members of the individuals with
mental retardation directly impacted, Reps. Thomas Bliley (R-VA) and James
Greenwood (R-PA) submitted a request for a General Accounting Office
investigation into P&A activities related to ICFs/MR closures and
compromised quality of care in community-based services (see enclosed).
Recommendations: Release an Executive Order that, (1) permits class action
litigation against ICFs/MR settings only in those cases in which a majority of
the residents, or their families and guardians, approve of the lawsuit; and (2)
requires P&A to monitor the health and safety of those residents impacted by
its lawsuits, with an emphasis on those individuals transferred from the ICF/MR
setting.
CHOICE IN RESIDENTIAL OPTIONS AND OLMSTEAD
Issue: States' efforts to maintain large public- and privately-operated
Intermediate Care Facilities for the Mentally Retarded (ICFs/MR; institutions)
are being undermined by advocates who do not approve of such facilities. These
advocacy groups have misstated the U.S. Supreme Court decision of Olmstead v.
L.C., by alleging that the Americans with Disabilities Act requires dismantling
of the institutional option. These advocacy organizations are receiving
significant technical support from the federal Office of Civil Rights. VOR is
most concerned by this apparent abuse of power. Elimination of specialized care
for our society's most vulnerable citizens has often led to tragic consequences
in terms of abuse, neglect and even death. Advocates, policymakers and
legislators should be focusing all energies on the development of expanded
community-based and ICF/MR options. We need both. Estimates indicate that over
200,000 individuals with mental retardation and other disabilities are awaiting
services.
Recommendations: (1) Inform all Governors and State Medicaid Directors of the
Administration's (and Olmstead's) support for a full range of care options,
including ICF/MR settings. (2) Visit Northern Virginia Training Center in
Fairfax, Virginia, which has implemented the "Centers of Excellence"
program. The "Centers of Excellence" program makes available center
expertise to individuals receiving community-based residential care. Access to
medical, dental, therapies and other programs by these individuals heightens the
quality of care received by this population and helps to ensure their placement
in the community will be successful. VOR would be pleased to arrange such a
visit.
QUALITY OF CARE ASSURANCES
IN HOME AND COMMUNITY-BASED WAIVER SETTINGS
Issue: VOR has long been concerned about the level of quality of care in many
community- based settings serving people with mental retardation. VOR applauds
recent efforts by the Health Care Financing Administration (HCFA) to consider
quality of care in Home and Community-Based Services (HCBS)Waiver settings.
Recommendation: Strengthen and support HCFA's quality initiative related to
the HCBS waiver setting.
CONTACT FOR MORE INFORMATION:
Marilyn Straw, President / (515) 225-0895
520 Southfork Drive
Waukee, Iowa 50263
wstraw@gateway.net
Mary McTernan, Chair, Gov't Affairs Committee / 781-334-4233
8 Baldwin Lane
Lynnfield, Massachusetts 01940
Tamie Hopp, Executive Director / (605) 399-1624
5005 Newport Drive, Suite 108
Rolling Meadows, IL 60008
vor@compuserve.com
