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Testimony of Carla Jacobs of Tustin, California
On Behalf of NAMI - The National Alliance for the Mentally Ill

"Housing, Homelessness, and Mental Illness - Recommendations for President Bush's New Freedom Initiative Commission on Mental Health Services"

Los Angeles, California
November 13, 2002

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Chairman Hogan and members of the President's New Freedom Initiative Commission on Mental Health Services, I am pleased to offer this testimony on behalf of the National Alliance for the Mentally Ill (NAMI). I am Carla Jacobs, of Tustin, CA and I currently serve on the national Board of Directors of NAMI. As you know, NAMI's national President, Jim McNulty, provided comprehensive and detailed testimony to this Commission at its meeting on July 18, 2002. This statement covered the broad range of issues and concerns within the Commission's jurisdiction related to public sector mental illness treatment services. The testimony I am offering today on behalf of NAMI is intended to concentrate on the issues of housing and homelessness - the major focus of the Commission's current meeting.

The Commission's Interim Report

At the outset, I would like to offer NAMI's congratulations on release for the Commission's Interim Report on November 1. In NAMI's view, this Interim Report represents an extremely coherent and sound statement of the current state of the public mental health system in our country. It defines critical problems that are facing the nation's public mental health system and confirms the fact that after three decades of broken promises, the system is worse than many policymakers across the country have ever imagined. This is especially troubling for NAMI given that the knowledge and tools for recovery from mental illness are available right now.

As the Interim Report recognizes, treatment works and real recovery is possible. However, because of a fragmented treatment system and inadequate adoption of evidence-based practices, millions of Americans are condemned to isolation, neglect and despair. This Interim Report can and should serve to guide and inform the final report and recommendations that you will be making to the President next year. As our nation's largest organization representing individuals with severe mental illness and their families, NAMI looks forward working with this Commission to ensure that the final report is as strong as possible in guiding the major reforms that are needed to fix our failing public mental health system.

The Need to Focus on Housing

NAMI is pleased that the Commission has come to California and we are especially grateful that this meeting has included such a heavy focus on the issues of housing and homelessness. Earlier this week you toured several housing developments and programs that are specifically geared to serving adult consumers with severe mental illnesses and co-occurring substance abuse disorders. You have seen first-hand how critical access to decent, safe and affordable housing is to the recovery process. The reality is that without access to housing and housing related supports, recovery from mental illness is nearly impossible to achieve. All of the major elements of recovery - access to evidence-based treatment, community supports, family and peer relationships, employment, independence and full integration into community life - collapse without a stable housing environment.

We are well aware of this reality in Southern California. The people of Southern California are better educated about this reality thanks to the outstanding work of the Los Angeles Times editorial board and its 2001 Pulitzer Prize winning writer Alex Raskin. His landmark series of editorials in the Times on chronic homelessness and mental illness has been a major factor in shifting the debate here in California towards solutions aimed at ending homelessness and addressing the failures of our public mental health system. NAMI would like to urge the Commission to review all of these editorials that have already been recognized with the highest honor in journalism. See: http://www.latimes.com/news/opinion/.

In recent years, we have seen a number of reforms undertaken in California. Over the past decade, The Homes for Life Foundation has developed hundreds of permanent supportive housing units for formerly homeless people with mental illness. Most recently, the California legislature and Governor Davis have taken key to address access to mental illness treatment services, chronic homelessness and the burden being imposed on our criminal justice system. First, last year the state allocated more than $55 million in funding for mental illness treatment services for people experiencing chronic homelessness as part of the AB 2034 program. In addition, this year the legislature passed, and Governor Davis signed legislation (AB 1425) to foster provision of services in supportive housing programs.

Finally, this year the legislature (through the leadership of Assemblywoman Helen Thomson) passed legislation - known as "Laura's Law" - to allow counties to develop programs to expand access to treatment for individuals with the most severe and disabling mental illnesses that do not come voluntarily to services. We are making progress in California in addressing homelessness and mental illness as a result of increased collaboration between diverse stakeholders - homeless advocates, mental health advocates, leaders in the criminal justice field and (most importantly) leading newspapers in our state that have drawn public attention to this critical state priority.

Housing: A Major NAMI Priority

Let me now turn to some of the major issues related to housing and homelessness that NAMI believes this Commission must focus on. In recent surveys of the NAMI membership and NAMI state leaders, housing has emerged as a top policy priority, second only to state level funding of adult mental illness treatment system. Why? The answers are obvious. For many consumers and families, getting access to decent, safe and affordable housing is the single most difficult struggle. Further, for many NAMI family members (especially aging parents), housing stability for their ill family member is their number one anxiety. They understand that stable housing is the foundation upon which long-term recovery is built.

NAMI believes that the problems and concerns around access to housing for consumers can be organized around 4 major themes:

1. poverty experienced by non-elderly adults with severe mental illnesses,
2. discrimination and NIMBYism (both at the community level and outdated program design,
3. keeping the affordable housing resources that are currently directed to non-elderly adults with severe mental illnesses, and
4. pushing the public mental health system to direct appropriate resources toward helping consumers keep their housing.

Problems & Issues for the Commission to Recognize

As this Commission has already learned, housing is a complex issue and the affordable housing system is a complex web of agencies and funding streams for which accountability and dollars are widely dispersed - from HUD at the federal level, to state housing finance agencies, to public housing authorities, to local non-profit agencies, and finally to individual landlords and tenants. It is a system just as complex as our public mental health system that this Commission has been examining. It is also a system that has a relatively poor record in serving individuals with severe mental illness.

As this Commission moves forward in examining the issues of housing and homelessness, NAMI believes that there are major challenges that the must be faced head on:

• The U.S. Department of Housing and Urban Development (HUD) and many state and local agencies responsible for administering our nation's affordable-housing system do little to alleviate the struggle to access community-based housing and supports. Historically, HUD has made little effort to understand the real implications and bitter reality of recent federal housing policies that have reduced the federally subsidized housing units available to people with severe mental illnesses and other disabilities.

• Policies enacted by Congress in 1992 and 1996 have allowed public and assisted-housing providers to designate housing as "elderly only" - resulting in the loss of an estimated 273,000 units of affordable housing for people with disabilities over the past decade. The irony of this loss of housing (as well as cuts to other HUD programs such as Section 811) is that it comes when people with all types of disabilities (particularly severe mental illnesses) are increasingly able to achieve recovery and live successfully in the community when they get stable housing paired with supportive services.

• Supportive housing works. Successful recovery-oriented outcomes are possible for the most seriously ill consumers (many of whom have co-occurring substance abuse problems), but only when there is access to stable permanent housing that is directly linked with appropriate housing-related supports and services. There is substantial research indicating that supportive housing works to break the costly and inhumane cycle of hospitalization, homelessness and "criminalization" for people with severe and persistent mental illness. See: http://www.huduser.org/publications/suppsvcs/shdp.html and http://content.nejm.org/cgi/content/short/338/24/1734.

• The Medicaid Institutions for Mental Disease (IMD) Exclusion continues to discriminate against non-elderly adults with severe mental illness by limiting the ability of states to use their Medicaid programs to finance community-based housing-related supports. Further, the IMD Exclusion serves to erode the quality of care many consumers receive in the community and hinders the ability of states to use Medicaid waivers to transition consumers into the community from institutional settings as is done in the mental retardation/developmental disability system.

• According to 1998 and 2000 surveys conducted by the U.S. Conference of Mayors, on average 40 percent of the nation's homeless are single adults with severe mental illnesses and co-occurring substance abuse disorders. This over-representation of people with mental illness among the homeless is magnified further within the "chronically" homelessness population, i.e. those who stay homeless over an extended period of time.

• The 2000 "Priced Out" report (produced by the Technical Assistance Collaborative and Consortium for Citizens With Disabilities) found that SSI income amounts to only 18.5 percent of median income nationally and that the average rent for a modest, one-bedroom apartment consumes, on average, 98 percent of a person's monthly SSI check. See: http://www.c-c-d.org/POin2000.html.

• HUD's most recent "Worst Case Housing Needs" report found that worst case needs declined for every major population served by HUD's programs in 1999 and 2000 except non-elderly people with disabilities (worst case housing need is defined as an individual paying more than 50% of their monthly income for rent or living in substandard housing).

• A 2001 University of Pennsylvania study found that that permanent supportive housing for individuals with mental illness who are homeless are nearly as much as the costs of homelessness (emergency room treatment, psychiatric hospitalization, incarceration, etc.). See: http://intranet.csh.org/publications/NYNYCostStudy.pdf.

• Housing retention remains a major concern for many consumers. State and local public mental health systems in many communities remain too focused on housing acquisition and placement, with only limited attention paid to provision of housing-related supportive services that can ensure long-term housing retention. The absence of ongoing supports has left many individuals with severe mental illnesses with troubled tenant histories and long-term ineligibility for programs such as Section 8 and public housing.

Recommendations for the Commission

1) Poverty

While alleviating poverty for all non-elderly adults with severe mental illnesses is far beyond the scope of the Commission's mandate, there are several concrete steps that can be made by HUD to address the affordable housing crisis for non-elderly adults with severe mental illnesses whose sole income support is SSI cash benefits. Most important among these is to ensure that existing HUD programs are better targeted to individuals living on SSI at the state and local level. As part of this effort, NAMI and its colleague organization in the mental retardation field, the Arc of the United States, are moving forward on a program to education and train our affiliates in how to more effectively participate in the affordable housing planning processes that HUD requires of states and localities. In order to advance this process, NAMI urges this Commission to recommend that the President:

1. promote greater targeting of HUD's programs (particularly HOME) toward development of rental housing that serves extremely low-income households (those at 30% of median income and below),
2. allow greater discretion for housing authorities to "project-base" or "sponsor base" Section 8 tenant-based vouchers and allow non-profits to operate property specific waiting lists, and
3. urge Congress to emphasize rental production and extremely low-income targeting as part of any new affordable housing production program.

2) Discrimination, NIMBYism & Lack of Attention from the Affordable Housing System

Discrimination in housing for individuals with mental illness remains a major barrier to housing. Since the 1988 amendments to the Fair Housing Act, discrimination against people with mental illness in housing has been illegal. However, many NAMI members know from personal experience that stigma and discrimination are still huge obstacles - from landlords that simply refuse to rent to tenants with a history of mental illness, to communities that organize against congregate housing in residential neighborhoods. Moreover, NAMI still sees significant discrimination in federal programs that allow local housing providers to restrict tenancy based on disability or simply limit eligibility for supportive services that are needed to allow a consumer to retain their housing. NAMI would therefore recommend the following steps for this Commission to consider:

1. direct the Office of Public and Indian Housing at HUD to issue guidance to all housing authorities receiving rental vouchers for people with disabilities tied to "elderly only" designation to ensure that they remain directed to non-elderly people with disabilities upon turnover;
2. grant the HUD Office of Fair Housing Equal Opportunity (FHEO) oversight authority for approval of all public housing Allocation Plan submissions;
3. direct HUD to issue regulations implementing assisted housing tenant preference provisions of Title VI of the Housing and Community Development Act of 1992; and
4. strongly recommend that Congress repeal the discriminatory IMD Exclusion that unfairly restricts Medicaid eligibility based upon the type of housing a consumer lives and bars Medicaid coverage for most community-based services that are integral to supportive housing.

3) Keeping Current Resources

While NAMI supports increased federal, state and local funding for affordable housing programs, we also recognize that the return of budget deficits at the federal level and significant revenue shortfalls at the state level make such expectations unrealistic for the immediate future. At the same time, NAMI believes that there is much that this Commission can do to ensure that those housing resources that are now directed toward people with mental illness are preserved and remain focused on high priority needs. NAMI would therefore urge that the Commission:

1. applaud HUD and Secretary Martinez for their most recent initiative to address chronic homeless and move forward on a national goal to end chronic homelessness over the next decade;
2. direct HUD to develop a long-term plan for stable funding for renewal of expiring rent subsidies under the Section 811 program and the permanent supportive housing programs under the McKinney-Vento Homeless Assistance Act (Shelter Plus Care and SHP); and
3. direct HUD to continue the 30% permanent housing set aside and 25% local service match requirement within the McKinney-Vento Homeless Assistance Act.

4) Public Mental Health System and Housing Retention

Much of NAMI's testimony has focused on what the affordable housing system can do to better serve people with mental illness. At the same time, NAMI believes that there is much the public mental health system can do to more effectively work with the housing system. The reality is that just getting someone access to housing is the easy part. The bigger challenge is helping a consumer retain that same housing over the long-term. Just as every acute episode of psychosis or mania complicates long-term recovery, every eviction leaves a consumer with a more difficult struggle to get back to stable housing.

The reality is that most individuals with severe and persistent mental illness need housing-related support services that are personalized and flexible in order to meet the obligations of a lease. Further, NAMI believes that there needs to be a continuum of housing options available at the community level - from congregate and supervised housing, all the way to independent apartments. It is critically important that the public mental health system be held accountable for making services accessible in all the full range of residential settings so that consumers can retain their housing on a long-term basis. Finally, NAMI believes that tenants with mental illness should not be discriminated against in housing based upon their status in the mental health system, i.e. individuals receiving treatment on an involuntary basis should not be ineligible for housing programs.

In order to further these goals NAMI urges this Commission to take the following steps:

1. direct HUD and the Center for Mental Health Services (CMHS) to develop a set of evidence-based best practice guidelines for housing-related supportive services for public mental health agencies, and
2. direct the Centers for Medicare and Medicaid Services (CMS) to develop guidance for the states on Medicaid financing of supportive services in permanent supportive housing. This should include guidance to the states on how they might develop proposals to waive the restrictions in the IMD Exclusion in order to fund services in permanent supportive housing programs.

Conclusion

Chairman Hogan and members of the President's New Freedom Initiative Commission on Mental Health Services, NAMI appreciates the opportunity to offer our views on this important issue.

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