|
| | NAMI
OFFERS COMMENTS ON BUSH EXECUTIVE ORDER REGARDING STATE IMPLEMENTATION OF
OLMSTEAD
NAMI
E-News August 28, 2001 Vol. 02-17
On August 27 NAMI submitted comments to the Bush Administration on the
president's Executive Order on the landmark LC vs Olmstead decision. These
comments, included below, concern the role of the federal government in
assisting states to meet their obligations to make community placement and
supports available to people with severe disabilities currently residing in
institutions including public psychiatric hospitals and nursing homes. Among the
key concerns raised as part of NAMIs comments are: the discriminatory impact of
the Medicaid IMD exclusion, the importance of access to affordable housing and
strategies for addressing the criminalization of mental illness.
Additional information on the Olmstead decision and its importance to
individuals with severe mental illness and their families is available at the
following links:
To access NAMI E-News dated June 29, 2001 "NAMI APPLAUDS PRESIDENT
BUSH'S "NEW FREEDOM INITIATIVE" go to http://www.nami.org/update/20010203.html
To access President Bush's executive order go to http://www.whitehouse.gov/news/releases/2001/06/20010619.html
To access the Olmstead decision go to http://www.nami.org/legal/finalbrf.html
The New Freedom Initiative announced by President Bush on February 1, 2001 is
part of a nationwide effort to remove barriers to community living for people
with disabilities. http://www.hcfa.gov/medicaid/newfreedom/
***************************
August 27, 2001
New Freedom Initiatives Group
U.S. Department of Health and Human Services
P.O. Box 23271
Washington, DC 20036-3271
Dear Sir/Madam:
On behalf of the 210,000 members and 1,200 affiliates of the National
Alliance for the Mentally Ill (NAMI), I am pleased to submit the following
comments on Executive Order 13217 - Community-Based Alternatives for Individuals
With Disabilities. As the nation's largest national organization representing
people with severe mental illnesses and their families, NAMI is strongly
supportive of the overall goals of both this Executive Order and President
Bush's New Freedom Initiative to promote recovery, independence and greater
community integration for people with severe disabilities.
NAMI is pleased that the Bush Administration is pushing forward on a defined
agenda to assist states in meeting their obligations to promote community
integration for people with severe disabilities. These goals, set forth by the
U.S. Supreme Court in the L.C. v. Olmstead case (527 U.S. 581 (1999)), are
consistent with Title II of the Americans With Disabilities Act (ADA). In this
landmark case, the Supreme Court made clear that states are obligated to place
qualified individuals with mental disabilities (including people with severe and
persistent mental illnesses) in community settings, rather than institutions,
whenever such placement is appropriate. Further, the Supreme Court noted that
states must avoid disability-based discrimination unless doing so would
fundamentally alter the nature of a state-operated service or program.
In NAMI's view, it is significant to note that both of the original
plaintiffs in the Olmstead case were women with co-occurring severe mental
illnesses and mental retardation who were seeking to leave a state psychiatric
hospital in Georgia. Like these two brave women who came forward to challenge
state policy, NAMI members over the years - individuals with severe mental
illnesses and their families - have had to fight for years to get the treatment
and support services that are essential to community integration. In NAMI's
view, the Olmstead case is important because it sets forth an obligation for the
states to make community placement (with necessary supports including housing)
available to institutionalized persons.
NAMI is grateful for the leadership of President Bush in signing Executive
Order 13217 and directing federal agencies (HHS, HUD, Education, Justice, Labor
and Social Security) to coordinate assistance to the states as they move forward
in implementing Olmstead. NAMI is hopeful that this Executive Order will set the
context by which federal policies can be measured against the goals of serving
people with mental disabilities and removing barriers to community integration.
At the same time, NAMI is concerned that the Executive Order appears to narrow
the universe of states targeted for assistance to those that are actively
planning for comprehensive Olmstead implementation. In other words, the
Executive Order does not address those states that are not engaged in Olmstead
planning. Today, more than two years after the Olmstead decision, a number of
states have not yet begun to even plan for how they will carry out the
requirements of this decision. NAMI is concerned that limiting the Order to the
states that are currently actively engaged in planning will cause those that
aren't to construe that they have no obligation to move forward on promoting
community integration or seeking assistance from the covered federal agencies to
achieve the goals of community integration.
In addition to commenting on the specifics in the Executive Order, NAMI would
like to provide additional context on the Olmstead decision as it affects
individuals with severe mental illnesses. Many of NAMI's colleague disability
organizations view Olmstead as a mandate on the states to close or significantly
downsize institutions (including nursing homes, intermediate care facilities and
public psychiatric hospitals). NAMI supports this goal for individuals with
severe disabilities who are ready for community placement. At the same time,
NAMI would like to note for the record that this same policy has been in place
in many states for the 40 years - with oftentimes tragic results. Today, there
are more than four times the number of people with severe mental illness
residing in our nation's jails and prisons as in psychiatric hospitals. In most
major cities, people with severe mental illnesses comprise as much as 40% of the
homeless population. These are tragic outgrowths of deinstitutionalization
without adequate community services and supports.
In NAMI's view, the social experiment of deinstitutionalization of people
with severe and persistent mental illness, while well intentioned, failed
hundreds of thousands of consumers and their families over the last four
decades. The reasons for this failure are complex. However, in NAMI's view some
of the factors have led to the breakdown of public mental systems in many states
include:
 | failure to properly invest in community-based housing and services, |
| lack of accountability in ensuring that public mental health agencies
focused limited resources on people with the most severe illnesses |
| inability of states and communities to follow and adopt best
evidence-based practices in their public mental health systems, and |
| legal barriers that prevent the most severely ill individuals from
accessing needed treatment. |
In other words, on a fundamental level, people with severe mental illness and
their families have been victims of a failed policy of
deinstitutionalization.
Before moving on to NAMI's specific recommendations regarding the
solicitation for comments on Executive Order 13217, one additional point needs
to be made. NAMI remains very concerned that governors, state legislators, state
Medicaid directors, state mental health commissioners and other key officials
are considering, in response to appeals from advocates, establishing new
criteria for housing and community support programs that would grant priority
status to individuals with disabilities who are transitioning from nursing homes
and other institutions under state Olmstead plans. NAMI is leery of any scheme
that would, by designed or consequence, place individuals with severe mental
illnesses who are already in the community at a disadvantage relative to
individuals seeking to enter the community under a state Olmstead plan. NAMI's
concern here is heightened when the interests of individuals with the most
severe and disabling mental illnesses are at issue - specifically the interests
of individuals with severe and persistent mental illnesses caught in the tragic
cycle of homeless shelters, the streets, the criminal justice system and
intermittent treatment. They are unlikely to fit neatly into a state's Olmstead
planning criteria, even though their housing and community support needs are
equally as compelling.
NAMI would therefore like to offer the following comments in the spirit of
helping the Bush Administration and the states avoid the myriad of lost lives,
social ills and missed opportunities that are now associated with
deinstitutionalization of people with mental illness.
Current Barriers in Federal Law, Policy and Programs That Limit Community
Integration:
- Fragmented Medicaid Rehabilitation Option prevents state investment in
PACT. State Medicaid agencies were provided with important guidance from
HCFA in June 1999 on how to fund intensive community based services
(including assertive community treatment) under the existing Medicaid
Rehabilitation option. Despite this effort, few states are using the
Rehabilitation option to its fullest extent to invest in evidence-based
programs such as PACT that have proven effective in meeting the needs of
individuals with severe mental illnesses in the community. The complicated
and fragmented nature of the Medicaid program allows states to direct
resources to service models that are demonstrated to work for individuals
with the most severe and disabling mental illnesses.
- The Medicaid Institutions for Mental Disease (IMD) Exclusion which
discriminates against non-elderly adults with severe mental illnesses. In
NAMI's view, IMD exclusion is an unfair and discriminatory limitation on
Medicaid financed services that applies only to 18-64 year old beneficiaries
with severe mental illnesses. In no other federally funded safety net
program is eligibility for services restricted on the basis of age,
disability and location of the service provided. NAMI recognizes that only
an act of Congress can repeal the IMD exclusion. Nevertheless, NAMI urges
that the Bush Administration reexamine this outdated and discriminatory
restriction on Medicaid eligibility and services as part of comprehensive
Olmstead implementation.
- Continuing disincentives in Social Security's disability programs that
penalize people with severe mental illnesses who are only able to work on a
part-time basis. In 1999, Congress passed the Ticket to Work and Work
Incentives Improvement Act (TWWIIA), the first major effort in decades to
address the pervasive disincentives to employment facing SSI AND SSDI
recipients. Despite the substantial progress made in this new law, the
unemployment rate among SSI and SSDI recipients with severe mental illnesses
is estimated to be above 80%. This is due in large part to the severe
penalties still associated with even part-time work. More needs to be done
to ensure both full implementation of TWWIIA and greater attention to the
disincentives to employment that were not included in TWWIIA.
- Vocational Rehabilitation is ineffective in serving adults with severe
mental illnesses. In a 1997 report entitled "Legacy of Failure,"
NAMI addressed the structural and operational barriers that prevent the
federal-state vocational rehabilitation system from effectively serving
individuals with severe mental illnesses - most prominently, the short-term,
process oriented system that allows public VR agencies to deem as little as
9 months of employment as a successful case closure. By contrast,
individuals with severe mental illnesses need long-term supports and
services to maintain employment (something traditional VR services are ill
equipped to provide). The "ticket to independence" program in
TWWIIA is intended to shift this focus to outcome oriented payment systems
that reward provision of long-term supports instead of short-term process
oriented interventions.
- "Elderly-Only" designation of public and assisted housing that
have restricted access to affordable housing. Since 1992, tens of thousands
of affordable housing units have been taken off line for non-elderly adults
with disabilities through designation of public and assisted housing as
"elderly only." Adults with severe mental illnesses have been most
disadvantaged in this process, largely as a result of the stigma and lack of
understanding associated with mental illness. In NAMI's view, the policy of
"elderly only" designation of public and assisted housing
represents the largest shift of affordable housing resources away from a
single class of individuals. In many communities across the country, there
is simply no remaining inventory of affordable efficiency or 1-bedroom
rental units open to people with disabilities.
Suggested Actions for Federal Agencies to Address Barriers and Support
Community Integration:
- The Centers for Medicare and Medicaid Services (CMS) should issue further
guidance to the states on Medicaid funding for evidence-based programs and
develop new guidelines for waivers to loosen restrictions under the IMD
exclusion. As noted above, the IMD exclusion bars states from receiving
federal Medicaid reimbursement for services provided to otherwise eligible
individuals with severe mental illnesses based upon where they live
(including community-based settings such as group homes and permanent
supportive housing with 16 or more residents). This Executive Order provides
CMS with an important opportunity to experiment with waivers and state plan
amendments that would allow states to waive the inflexible IMD exclusion to
fund intensive community-based services to individuals in congregate living
arrangements.
- HHS should issue new guidance to the states on the blending of substance
abuse and mental health block grants dollars to fund integrated treatment
for persons with co-occurring mental illness and substance abuse. Currently,
inflexible rules governing expenditure of mental health and substance abuse
block grant funds bar states from adequately investing in services targeted
to individuals with mental illness and co-occurring substance abuse
disorders. Numerous peer-reviewed studies have demonstrated that integrated
treatment (as opposed to parallel and sequential treatment) is most
effective in serving persons with co-occurring mental illness and addictive
disorders. Unfortunately, complicated administrative and reporting
requirements for the separate mental health and substance abuse block grant
programs (administered by the Substance Abuse and Mental Health Services
Administration, SAMHSA) prevent states from blending these funding streams
to fund integrated treatment. NAMI strongly urges the Secretary to examine
methods for waiving these duplicative reporting requirements and thereby
permit states to blend mental health and substance abuse block grant funds
for integrated treatment. This is especially important for states that will
be targeting individuals with co-occurring mental illness and substance
abuse disorders as part of a comprehensive Olmstead plan.
- SSA should revise its draft "Ticket to Work" regulations to
ensure that individuals with the most severe and disabling mental
disabilities can access the program. In comments submitted in February 2001
on the Social Security Administration's draft Notice of Proposed Rulemaking
for the TWWIIA "ticket to independence" program NAMI raised
several concerns about the ability of SSI and SSDI beneficiaries with severe
mental illness to effectively access and use the program. A copy of NAMI's
comments is available on the NAMI website at: http://www.nami.org/update/20010227.html
.
NAMI has two overriding concerns with the draft NPRM that SSA published late
last year. First, that SSI and SSDI beneficiaries labeled as "medical
improvement excepted" (MIE) would not be allowed to receive a ticket
until their first Continuing Disability Review (CDR). This restrictive rule,
developed by SSA on its own, would effectively bar hundreds of thousands of
SSI and SSDI beneficiaries with mental illness from ever getting a ticket in
order to leave the benefit rolls for the workforce. Second, NAMI is
concerned that the requirements and schedules envisioned by the
"milestone-outcome" payment system would make it difficult, if not
impossible for small non-profit providers and consumer-run programs to
participate as Employment Networks. NAMI strongly supports TWWIIA's ticket
precisely because it offers SSI and SSDI beneficiaries consumer choice and
the prospect of long-term work-related supports based on an outcome system.
NAMI strongly encourages the SSA Commissioner to reexamine the draft NPRM
and make the changes necessary to ensure that people with the most severe
disabilities who are transitioning into the community from institutional
settings can use the ticket program to find, and most importantly, hold a
job.
- HUD should issue new guidance to state and local jurisdictions regarding
the Consolidated Plan and the agency's mainstream programs. Currently, these
programs are virtually inaccessible for people with mental illnesses and
other disabilities. Ensuring access to decent, safe and affordable housing
is likely to be the most daunting challenge for state Olmstead planning. It
is NAMI's experience that the affordable housing sector has traditionally
been reluctant to come forward with sufficient resources to meet the needs
people with severe disabilities in the community who are already living in
the community and experiencing "worst case housing needs" (i.e.,
living in substandard housing or paying more than 50% of monthly income for
rent). This is alarming given the magnitude of the challenge facing SSI
beneficiaries. In their May 2001 report "Priced Out," the
Technical Assistance Collaborative and the Consortium for Citizens With
Disabilities found that SSI beneficiaries are only 18.5% of median income
and must pay more than 85% of their monthly income to rent a modest
1-bedroom apartment.
In many states and communities, this historic reluctance will be even more
difficult when seeking to make affordable housing resources available to
people coming directly out of institutions, psychiatric hospitals and
nursing homes. It is also NAMI's view that discreet disability housing
programs at HUD (Section 811, Section 8 disability vouchers, the McKinney-Vento
permanent housing programs) are extremely important for addressing the
housing crisis for people with disabilities. However, the modest funding
levels associated with these small, but very effective programs prevents
them from dealing with the enormous scope of current housing crisis.
NAMI believes that in order to effectively address this enormous challenge,
states and communities should be strongly encouraged to use mainstream HUD
resources (HOME, CDBG, Section 8) to address the affordable housing crisis
for people with disabilities. This is most effectively done by addressing
the housing needs of people with severe mental illnesses and other
disabilities as part of HUD's required Consolidated Plan process. HUD should
therefore be encouraged to insist that states and communities address both
Olmstead planning in particular, and the housing needs of people with
disabilities in general, as part of their Consolidated Plan process.
- HUD should terminate, or at least significantly scale back, its Access
Housing 2000 program. As noted above, ensuring access to decent, safe and
affordable housing is, in NAMI's view, central to making Olmstead state
planning and implementation effective. In July 2000, HUD announced a new
pilot program, Access Housing 2000, tied to Olmstead and the CMS nursing
home transition grant program. NAMI submitted comments on Access Housing
2000 in February 2001 raising a number of concerns with the program's
structure and funding. These comments can be viewed at: http://www.nami.org/pressroom/testimony/20010216_accesshousing.html.
NAMI concerns with Access Housing 2000 are numerous, but these are important
to raise here. First, HUD redirected existing resources already targeted by
Congress to people with disabilities who are facing worst case housing needs
because of "elderly only" designation of public and assisted
housing. Second, HUD restricted eligibility to individuals transitioning
into the community from nursing homes only - denying access to individuals
seeking to leave public psychiatric hospitals (Note - the very two
plaintiffs in the Olmstead case would have been ineligible under HUD's
criteria).
Finally, HUD's proposal for the Access Housing 2000 program has a inordinate
reliance on homeownership as a preferred option. While NAMI strongly
supports homeownership as an aspirational goal for people with disabilities,
the reality is that such an approach completely excludes individuals with
severe disabilities who rely on SSI as their sole source of monthly income -
persons likely to be disproportionately represented in any proposed Olmstead
plan. In fact, HUD's own guidelines for a separate disability homeownership
program establishes a minimum income threshold far above any state's annual
SSI income level (including any state supplemental benefit). In short, NAMI
believes that HUD's Access Housing 2000 program is fundamentally flawed and
should either be withdrawn completely, or revised significantly to make it
more responsive to the realities facing states, the affordable housing
system, public sector disability service programs and people with
disabilities and their families.
- Justice Department should continue promoting Mental Health Courts and
other Court-based mechanisms to create alternatives to incarceration for
personas with severe mental illnesses. Additionally, the Department should
push for full funding for the Federal Mental Health Courts program and
prioritize resources through existing resources (e.g. the Edward R. Byrne
grant program) for theses innovative Courts.
- HHS should push for full funding of its program to provide grants for jail
diversion programs authorized under P.L. 106-310, the Children's Health Act
of 2000. Additionally, HHS should continue to work cooperatively with the
Department of Justice, HUD, and the Social Security Administration (SSA) to
maximize resources targeted for persons with severe mental illnesses who
come into contact with criminal justice systems.
- The SSA and CMS should work with state and local corrections systems to
efficiently restore SSI and Medicaid benefits to eligible individuals with
severe mental illnesses after their release from jail or prison. Currently,
many people who are jailed for just a few days are removed from these
benefits and, as a consequence, are unable to access desperately needed
medial care and support services after their return to the community.
Federal Interagency Coordination in Support of Community Integration:
- HHS and HUD should develop a more appropriate division of responsibilities
for people with severe disabilities who are chronically homeless, i.e.
federal policy should be oriented towards ending homelessness, rather than
sustaining programs that serve the homeless. In recent months, Secretary
Thompson and Secretary Martinez have begun significant discussions about how
to most effectively create a more rational division of labor between HHS and
HUD with respect to homeless programs. These discussions have centered on
reorienting federal policy toward ending homelessness, rather than building
a permanent services infrastructure for the homeless. NAMI applauds this
effort and further encourages that it focus on the needs of chronic homeless
individuals with disabilities, especially people with severe mental illness
and/or substance abuse disorders. In NAMI's view, HUD's $1.02 billion
McKinney-Vento program should become the long-term funding source for
development of new permanent supportive housing for chronically homeless
individuals. HHS programs, by contrast, should be refocused on providing
treatment and supportive services to chronically homeless individuals with
disabilities and other long-term health care needs. This, in NAMI's view, is
the most effective strategy designed to actually end homelessness. Further,
NAMI encourages the development of this national strategy as part of
Olmstead implementation in order to avoid the massive increases in
homelessness that have occurred all across the country in the aftermath of
closure of public psychiatric hospitals and other institutions. Olmstead
implementation does not have to mean an increase in homelessness, so long as
HUD, HHS and state and local governments have the infrastructure in place to
end homelessness for people with disabilities.
- HHS (specifically SAMHSA) and the Justice Department should develop
guidelines and model programs for states and communities for diverting
non-violent offenders with mental illness out of the criminal justice
system.
Thank you for the opportunity to comment on Executive Order 13217 and the
important national issue of independence, recovery and greater community
integration for people living with severe disability.
Sincerely,
Rick Birkel
|
