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Preliminary Response |
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VOR Comments to “Delivering on the Promise:
Preliminary Report of Federal Agencies’ Actions to
Eliminate Barriers and Promote Community Integration” March 2002 Executive Summary Voice of the Retarded (VOR) submits its comments to
“Delivering on the Promise,” released by the U.S. Department of Health and
Human Services (HHS) on December 21, 2001. VOR represents individuals with mental retardation and
their families. We are the only national organization which supports the
availability of a full spectrum of quality care options for people with mental
retardation, including own-home, community-based supports, and Intermediate Care
Facilities for the Mentally Retarded (ICFs/MR). VOR has thousands of members
with representation in every state, and 150 organizational affiliates. VOR asserts that any action by the Administration much
adhere to the following guiding principles: Specific Comments VOR applauds the Administration’s attention to including
stakeholders in a variety of policymaking forums. VOR’s submission
specifically requests involvement of VOR representatives. VOR suggests a specific reform proposal regarding DOJ CRIPA
enforcement that would enhance the effectiveness of CRIPA. Specifically, VOR
suggests consideration of the actual impact of past CRIPA actions (have people
been harmed?) and proposes a more streamlined enforcement structure that
includes better coordination with CMS enforcement activities. VOR requests greater accountability of Protection and
Advocacy (P&A) and Office of Civil Rights (OCR) activities, including
presentations. It has been VOR members’ experience that the tenor of these
presentations, and other activities, are biased against ICFs/MR care, contrary
to Olmstead. Proposal for
Reform In developing a community-based infrastructure, federal
agencies are encouraged to consider ICFs/MR as ready resources to help address
legitimate barriers to community-based care. An ICFs/MR serving as a
“Community Resource Center” is one that provides specialized medical,
dental, therapeutic and respite services to individuals living in the community.
A comprehensive Community Resource Center will also provide training to staff of
community providers and community-based clinicians, and establish formal
relationships with universities to provide specialized training opportunities
for students. Successful comprehensive models of Community Resource
Centers are found in Virginia, Kentucky, and Massachusetts. Community Resource
Centers with a more narrow focus (i.e., engineering customized wheelchairs) are
found throughout the country. Conclusion The Administration, in its “Delivering on the Promise”
report, has made important strides towards ensuring all people with disabilities
receive the high quality services and supports they choose and require. To help ensure responsible implementation, express
clarification of the Administration’s support of ALL services, including
community and ICFs/MR supports is needed. This clarification should come from
the U.S. Department of Health and Human Services, Office for Civil Rights, and
the Administration on Developmental Disabilities. For more information, please contact: Tamie Hopp, Executive Director
VOR Comments to
“Delivering on the Promise:
Preliminary Report
of Federal Agencies’ Actions to Eliminate Barriers and Promote Community
Integration”
March 2002 On December 21, the U.S. Department of Health and Human
Services (HHS), on behalf of 10 federal agencies, submitted the above referenced
report to President George W. Bush. The report was prepared in response to
Executive Order 13217, which stated, in part, “By the authority vested in me
as President by the Constitution and the laws of the United States of America,
and in order to place qualified individuals with disabilities in community
settings whenever appropriate, it is hereby ordered as follows: The Federal
Government must assist States and localities to implement swiftly the Olmstead
decision, so as to help ensure that all Americans have the opportunity to live
close to their families and friends, to live more independently, to engage in
productive employment, and to participate in community life.” The development of “Delivering on the Promise”
benefitted from extensive public input from individuals and organizations,
including Voice of the Retarded (VOR). VOR respectfully submits herein its comments in response to
“Delivering on the Promise.”
II. About VOR VOR represents individuals with mental retardation and
their families. We are the only national organization which supports the
availability of a full spectrum of quality care options for people with mental
retardation, including own-home, community-based supports, and both small and
large public and private Intermediate Care Facilities for the Mentally Retarded
(ICFs/MR). VOR has thousands of individual members with representation in every
state, and 150 organizational affiliates.
III.
Guiding Principles Upon submitting our comments to Executive Order 13217 (the
Olmstead Executive Order), VOR set forth several guiding principles that we
encouraged the U.S. Department of Health and Human Services (HHS) to follow in
considering reform and establishing policy. These guiding principles can be
summarized as follows:
A. The letter and spirit of the
Olmstead decision embraces the maintenance of a full array of quality support
options for people with disabilities based on choices and needs. This includes
community-based care and Intermediate Care Facilities for the Mentally Retarded
(ICFs/MR). VOR
is very pleased that the “Delivering on the Promise” report accurately
quoted the complete holding and qualifying language of the Olmstead decision
which expressly recognized a role for large ICFs/MR (“institutional”) care
for some individuals with disabilities.
B. Nothing in the Olmstead decision
negates the legally-established role of individuals and family members and
guardians of people with mental retardation as primary decisionmakers regarding
services, supports and policies impacting their loved one’s care. C.
The Olmstead decision and the Olmstead Executive Order expressly recognize that
individuals with disabilities will have different needs requiring different
residential settings. The population of individuals with mental retardation is
especially diverse. For example, there are a great many people with mental
retardation who are best served in community-based settings. There are also
people with mental retardation whose severe conditions require the close care
found in ICFs/MR. These individuals are not best served in community-based
settings. Any policy impacting this population must consider the full spectrum
of care needs. Consistent
with these principles, the Administration should give strong support to the
States in the creation of service systems which will address the diverse and
life-long conditions of people with disabilities. Such an array of support
systems may be best described as follows:
A. Families should be supported
in caring for their young children with disabilities through specific programs
(IDEA, TEFRA, respite, medical and dental).
B. Individuals with disabilities who
can self-determine should be supported in living and working situations which
encourage productivity and independence; and
C. People with severe and profound
mental retardation whose impairments are uncompromising must have the close care
found in facility-based (large and small ICFs/MR) settings. VOR
would ask that HHS and other federal agencies better distinguish between
different types of disabilities. VOR
urges HHS to clarify the Administration’s position in supporting the State’s
prerogative of planning systems of long term care which address citizen’s
diverse needs. In particular, VOR requests that HHS direct communications from
the Administration on Developmental Disabilities and the Office of Civil Rights
which spell out the right to an array of care as outlined above. It has been the
experience of VOR members in many states that the foregoing entities tilt toward
the “community imperative” of Olmstead activities at the state level.
Greater supervision and accountability of these entities, some of which are HHS-funded,
are needed. As
noted above there exists diverse needs within the population of people with
mental retardation. Furthermore, people with physical disabilities will have
vastly different support requirements than individuals who also experience a
cognitive disability. Federal agencies must take care not to establish policies
so broad — such as any policy supporting the elimination of the ICFs/MR care
option — that they may have unintended consequences on one subset of the
entire population with disabilities. IV.
Specific Comments
A.
Continued involvement of stakeholders VOR
applauds the provisions for continued involvement by stakeholders, including the
Medicaid Community Services Reform Task Force, Disability Advisory Committee,
and the meeting DOJ has planned with “disability rights advocates.”
VOR requests the opportunity to have representation in each of these
opportunities. VOR
would also recommend including stakeholders in many of the other objectives
envisioned in the “Delivering on the Promise” report, including but not
limited to: (1)
The ED Office for Civil Rights (OCR) Program Legal Group is preparing a resource
document for nationwide distribution targeted to parents and students that
clarifies the rights of students and the obligations of schools as students with
disabilities transition from high school to post-secondary education. (2)
Education will develop and disseminate public service announcements to increase
awareness of community-based living options. (3)
The Department of Justice (DOJ) will develop three technical assistance
documents: (a) a “Know Your Rights” piece for individuals with disabilities
currently living in institutions; (b) a similar document targeted for people at
risk of institutionalization; and (c) a document designed to assist states in
implementing their responsibilities under Olmstead. (5)
Any effort by HHS to reform Medicaid eligibility and access to home and
community-based waiver and ICFs/MR services (see comments below). (4)
Any efforts to reform the Civil Rights of Institutionalized Persons Act reform
(see comments below).
B.
Quality of care in community-based settings VOR
is very pleased to see that HHS will develop a multi-pronged strategy to address
quality of care issues in home and community-based settings. Reports
of abuse and neglect in community-based settings have been reported in at least
4 national publications and 19 states, including 7 investigative series that
spanned from several days to several months. Federal oversight of small private
and publicly-operated settings is desperately needed to help address the
tragedies that have been felt by countless individuals with mental retardation
and their families, often in the wake of deinstitutionalization. VOR
especially applauds any federal initiative that will work to standardize the
training and wage requirements for direct care workers, recognizing that these
workers represent an important front line defense to ensuring high quality care
and support. It is critical that they be given training and paid a wage that
ensures competence, high morale, and low turnover. VOR
also supports plans to seek Congressional authorization and funding from
Congress for a national demonstration respite care project and other essential
relief for caregivers of children with disabilities.
C.
Medicaid eligibility reform — tightening ICFs/MR eligibility VOR
does not oppose vehicles which make home and community-based waiver programs
easier to establish and available to more eligible persons with mental
retardation and developmental disabilities. Consistent with the guiding
principles set forth above, however, VOR cautions HHS from implementing any
policy or regulation that limits access to any ICF/MR by eligible individuals
who need and chose this level of support. Specifically, VOR strongly objects to
any concurrent tightening of ICFs/MR eligibility. As
waiting lists grow, more and more people are demanding HCBS services. Expanding
eligibility for this option makes sense. A concurrent tightening of eligibility
for ICFs/MR services, however, will only lead to placing greater stress on an
already overburdened community-based services system. Any gains realized in
expanding HCBS eligibility could quickly evaporate.
D.
Office on Disability and Community Integration VOR
expresses its concern that the new office will not become another powerfully
funded entity for the provision of community programs to the exclusion of large
and small ICFs/MR care.
E.
Housing HUD
regulations for Section 8 certificates for low income housing currently require
consideration of the income of all residents if two or more unrelated persons
live in a home. For persons with disabilities receiving SSI, this requirement
puts them over the income levels for Section 8 rental assistance. This HUD
regulation should be repealed as it represents a barrier to establish affordable
community-based housing for people with disabilities.
F.
Development of a Community Infrastructure
1.
General Comment Throughout
the report there is the recognition that the existing community-based
infrastructure is stressed and requires fixing before individuals with
disabilities who choose community-based care can expect to have a beneficial and
safe experience. The
focus on issues such as staffing, quality assurance and improvement activities,
respite, transportation, housing, caregiver and family support, employment,
education (especially the “aging-out” crisis), technology, etc., indicates
an understanding by the participating federal agencies that system is presently
unable to accommodate growing demand. More important, it strikes the appropriate
focus. Too often advocacy organizations and even public officials, place
inordinate amounts of energy figuring out how to get people out of
“institutional” settings, without a clear vision of where they will be
going. The “Delivering on the Promise” report honestly considers barriers to
community placement and integration and seems to have some awareness of the
cause and effect of transferring large numbers of persons from institutional
settings to the community. 2.
Specific solution In
developing a community-based infrastructure, federal agencies are encouraged to
consider ICFs/MR as ready resources to help address legitimate barriers to
community-based care. Stakeholders
providing input regarding barriers to community-based care often cite lack of
access to health care services as a primary barrier. Indeed, the ability to
access to medical, dental and therapeutic professionals for preventative or
acute health care needs often means the difference between success or failure of
community placement and integration. Despite demand, there very often lacks
willing and trained health care professionals in the community. Aggressive
deinstitutionalization (elimination of ICFs/MR settings) has only widened the
gap between demand and supply. ICFs/MR
can, and in some communities have, filled this void. An ICFs/MR, serving as a
Community Resource Center (aka “Center of Excellence”), is one that provides
specialized medical, dental, therapeutic and respite services to individuals
living in the community. A comprehensive Community Resource Center will also
provide training to staff of community providers and community-based clinicians,
and establish formal relationships with universities to provide specialized
training opportunities for students. Large
private and public ICFs/MR are ideally-suited to serve as Community Resource
Centers. ICFs/MR currently accommodate residents’ health, dental, therapy and
other service needs on-site. Many of the professionals in ICFs/MR have long
tenures working exclusively with individuals with mental retardation. Many of
these ICFs/MR are located in rural areas, making access to quality health care
and other services that much more challenging for community-based residents. Successful
comprehensive models of Community Resource Centers are found in Virginia,
Kentucky, Massachusetts, and other states. ICFs/MR that fill more narrow
community needs, such as engineering customized wheelchairs, repairing
wheelchairs, equestrian programs, pools and other recreation, day programs,
etc., exist across the country. Formal
HHS support for the Community Resource Center model through expanded federal
funding opportunities, marketing and other opportunities, is desperately needed.
G.
Civil Rights For Institutionalized Persons Act (CRIPA) reform “Delivering
on the Promise” notes as an objective more effective DOJ enforcement of CRIPA,
including expanding jurisdiction to include oversight of community programs and
private institutions. Before
pursuing reform that would provide DOJ with expanded jurisdiction per CRIPA, VOR
requests a thorough accounting of past CRIPA actions against state-operated ICFs/MR
settings to confirm effectiveness, as well as consideration of how people have
actually faired following a DOJ action. VOR is concerned that many past DOJ CRIPA enforcement actions have led to the closure of large state-operated facilities to the detriment of former facility residents. Reports of former residents meeting abuse, neglect or death following closures prompted by DOJ actions in Washington, D.C., Tennessee, Oregon and New Mexico, for example, raise concern that the outcome of DOJ actions are often tragic. Furthermore,
dual enforcement authority by DOJ and CMS over Medicaid-certified and funded
facilities raise legitimate questions of inefficiencies. As DOJ actions are
often against state-operated ICFs/MR certified facilities, a dual system has
arisen in which it is implied that Medicaid regulations and certification do not
meet minimal constitutional standards. In its actions, DOJ alleges that a
Medicaid-certified ICFs/MR can subject residents to “grievous harm” due to
findings of “egregious and flagrant conditions.” This should not be. If CMS
certifies a facility and has continuing responsibility — and jurisdiction —
to assure that its mandates are met, DOJ should not enter the picture until CMS
finds it cannot enforce compliance with the certification requirements. CMS,
which has primary jurisdiction over the funding and certification of all ICFs/MR,
public and private, should be the first line of oversight to ensure high quality
care. DOJ intervention should only be necessary once a facility is deemed to be
out-of-compliance with ICFs/MR regulations and all CMS administrative appeals
have been exhausted. It may be that CMS requires greater funding to carry out
its survey and oversight roles, but this is a more appropriate and efficient use
of limited federal dollars than continuing to fund a system that causes one
federal agency to bring costly lawsuits against programs overseen primarily by
another agency. VOR
proposes the following action toward effective reform of CRIPA enforcement: (a)
State that a Medicaid-certified facility is per se in compliance with minimal
constitutional standards; (b)
State that DOJ’s authority arises when all CMS appeals have been exhausted and
despite these efforts, a facility remains, out of compliance; (c)
Prior to the initiation of a DOJ civil action, DOJ must formally communicate
with families and guardians to ascertain their opinion regarding the standard of
care being received by their family members; and (d)
Establish greater DOJ accountability (the present statute merely asked that the
Attorney General certify that a facility’s conditions warrant a CRIPA action;
this certification need not be substantiated by any other group and is not
subject to judicial review).
H.
Involvement of Office of Civil Rights (OCR) and Protection and Advocacy
(P&A) It
has been VOR members’ experiences that the tenor of many OCR presentations and
P&A activities are biased against ICFs/MR. Such activities work to eliminate
the choice of ICFs/MR. Clarification to these entities by the federal agency providing oversight is needed and we do hereby request such clarification. Specifically, in all presentations and communications with states, DOJ, OCR and P&A will include, “nothing in the ADA condones termination of institutional settings for persons unable to handle or benefit from community settings . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).
V.
Conclusion VOR
is grateful to the Bush Administration for the many opportunities provided to
consumers for input on issues directly impacting our respective constituencies. For
more information on the above comments, please contact: Tamie
Hopp, Executive Director
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VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007 877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com |
