NAMI Offers Comments on Bush Executive Order Regarding State Implementation of Olmstead
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.
August 27, 2001
New Freedom Initiatives Group
U.S. Department of Health and Human Services
P.O. Box 23271
Washington, DC 20036-3271
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:
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.
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.
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.
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.
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.