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NAMI Offers Comments on Bush Executive Order Regarding State Implementation of Olmstead


For Immediate Release, August 28, 2001
Contact: Marie Wyffels
703-524-7600


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:

NAMI E-News dated June 29, 2001, NAMI APPLAUDS PRESIDENT BUSH'S "NEW FREEDOM INITIATIVE.

President Bush's Executive Order.

The Olmstead decision.

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.

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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.

  1. 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.

  2. 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.

  3. 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.

  4. "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:

  1. 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.

  2. 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.

  3. 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 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.

  4. 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.

  5. 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 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.

  6. 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.

  7. 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.

  8. 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:

  1. 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.

  2. 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  


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