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Statement of Margaret Stout on Behalf of the National Alliance for the Mentally Ill Before the U.S. Senate, Committee on Appropriations, Subcommittee on Labor-HHS-Education and Related Agencies

March 30, 2004

Chairman Specter, Senator Harkin and members of the Subcommittee, I am Margaret Stout of Johnson, Iowa. I current serve as President of the National Alliance for the Mentally Ill (NAMI) and Executive Director of NAMI’s statewide Iowa affiliate. I am pleased to offer NAMI’s view on the Subcommittee’s FY 2005 bill.

NAMI is the nation’s largest grassroots advocacy organization, 220,000 members representing persons with serious brain disorders and their families. Through our 1,200 chapters and affiliates in all 50 states, we support education, outreach, advocacy and research on behalf of persons with serious brain disorders such as schizophrenia, manic depressive illness, major depression, severe anxiety disorders and major mental illnesses affecting children.

Mr. Chairman, for too long severe mental illness has been shrouded in stigma and discrimination. These illnesses have been misunderstood, feared, hidden, and often ignored by science. Only in the last decade have we seen the first real hope for people with these brain disorders through pioneering research that has uncovered both a biological basis for these brain disorders and treatments that work.

The cost of mental illness to our nation is enormous. President Bush’s White House Mental Health Commission – which completed its work in 2003 – found that the direct treatment cost exceeds $71 billion annually. This does not include the $79 billion in estimated indirect costs of benefits and social services (including 35% of SSI benefits and 28% of SSDI benefits). These direct and indirect costs do not measure the substantial and growing burden that is imposed on "default" systems that are too often responsible for serving children and adults with mental illness who lack access to treatment. These costs fall most heavily on the criminal justice and corrections systems, emergency rooms, schools, families and homeless shelters. Moreover, these costs are not only financial, but also human in terms of lost productivity, lives lost to suicide and broken families. Investment in mental illness research and services are – in NAMI’s view – the highest priority for our nation and this Subcommittee.

Funding for Services Programs at SAMHSA & CMHS

The Center for Mental Health Services (CMHS) – part of the Substance Abuse and Mental Health Services Administration (SAMHSA) – is the principal federal agency engaged in support for state and local public mental health systems. Through its programs CMHS provides flexible funding for the states and conducts service demonstrations to help states move toward adoption of evidence-based practices. Funding for all SAMHSA and CMHS programs is part of the FY 2005 Labor-HHS-Education Appropriations bill that Congress will soon consider.

CMHS Programs and the Crisis Confronting the Public Mental Health System

During the recent economic downturn and resulting crisis the state budgets are facing, we are witnessing widening of gaps in the public mental illness treatment system in many states. This is resulting in unprecedented cuts being enacted by states in both direct spending on mental illness treatment and supportive services, and in Medicaid funding of such services. Deep cuts to front-line clinics and providers in the public mental health system, curbs on access to newer more effective medications and closure of acute care beds in the community are just a few of the misguided strategies that states are employing to close their widening budget gaps. The consequences of these emerging cracks in the service system are readily apparent, not just to NAMI’s consumer and family membership, but also to the public: increased risk of suicide, the growing number of chronic homeless adults and the growing trend of "criminalization" of mental illness and the stress it is placing on state and local jails and prisons.

The Need to Focus on Recovery-Oriented Evidence-Based Practices

As states continue to cut funding for mental illness treatment and supportive services, CMHS programs are becoming an increasingly important source of funding for the states. First and foremost, states should be encouraged to use their CMHS Block Grant funds to prevent further cuts in services for children and adults with severe mental illnesses. NAMI also supports targeting of CMHS dollars toward investment in evidence-based, outreach-oriented service delivery models for persons with severe mental illness in the community. The need to focus limited resources on evidence-based models (such as Programs of Assertive Community Treatment (PACT) and integrated treatment for co-occurring disorders) was recommended in 2003 by the President’s "New Freedom Initiative "Mental Health Commission Report. This landmark report called for a reform of the public mental health system to eliminate system fragmentation and better reflect the priorities of recovery and community integration.

NAMI Supports the Bush Administration’s Request for a "Mental Health System Transformation" Initiative

The President’s FY 2005 budget includes a request for $44 million at CMHS for a new state incentive grant program for "Mental Health System Transformation." This initiative is intended to help states follow through on the July 2003 recommendations in the White House "New Freedom Initiative" Mental Health Commission report. Under the proposal, funds would be allocated to states on a competitive basis to support the development of comprehensive state mental health plans to reduce system fragmentation and increase access to evidence-based services that promote recovery from mental illnesses. States would be required to use funds to develop plans that cut across multiple systems such as housing, criminal justice, child welfare, employment and education. In subsequent years, up to 85% of funds could be used to support community-based programs, with the remaining 15% available for state planning and coordination. NAMI strongly supports this proposal as critical to the effort to reform our nation’s fragmented and underfunded public mental health system and bridge the gap between scientific advances and practice.

NAMI Supports the "Samaritan" and "ELHSI" Initiatives to End Chronic Homelessness

The President’s FY 2005 budget proposes $70 million to continue the "Samaritan Initiative" to end chronic homelessness over the next decade, with funding spread across SAMHSA, HUD and the VA. In addition, the Bush Administration is seeking a $5 million increase for the Projects for Assistance in Transition from Homelessness (PATH) program – boosting FY 2005 funding to $55 million. PATH is a formula grant program to the states that funds outreach and engagement services for homeless individuals with severe mental illnesses. CMHS estimates that this increase in the PATH program will result in 154,000 homeless individuals with severe mental illnesses being served by state and local PATH grantees. NAMI also urges additional funding in FY 2005 for the PATH program to address inequities in the program’s interstate funding formula that have the allocation for many smaller rural states frozen since the mid-1990s.

NAMI urges full funding of the "Samaritan Initiative" in FY 2005 and the proposed increase for PATH. Individuals with severe mental illnesses and co-occurring substance abuse disorders make up the largest share of the more than 150,000 people who experience chronic homelessness – those who stay homeless for a year or more. In addition to supporting the Administration’s Samaritan Initiative and the recommended increases for PATH, NAMI also supports funding for the Ending Long-Term Homeless Services Initiative (ELHSI) program at SAMHSA to assist states and localities in funding services for new permanent supportive housing being developed through HUD’s McKinney-Vento program. Funding at SAMHSA for Samaritan and ELHSI is critical to producing and sustaining 150,000 units of permanent supportive housing that will all but eliminate chronic homelessness. Ending chronic homelessness through permanent supportive housing will pay for itself, as communities save hundreds of millions of dollars in that communities are relieved of the costs related to keeping people homeless – including those associated with shelters, emergency rooms and jails.

Funding for CMHS Programs in the President’s FY 2005 Budget

In addition to the initiatives noted above, NAMI also supports ongoing activities at CMHS.

  • Mental Health Block Grant – CMHS’s largest program, the Mental Health Block Grant (state formula grant program), would receive a $2 million increase under the President’s FY 2005 budget proposal (boosting funding to $436 million).
  • Children’s Mental Health program at CMHS – The President is requesting a $4 million increase for the Children’s Mental Health program, increasing funding to $106 million.
  • Programs of Regional and National Significance – CMHS’s own discretionary budget – known as Programs of Regional and National Significance (PRNS) – would increase under the President’s budget to $271 million. This includes the $44 million mental health system transformation initiative noted above.
  • Co-Occurring Disorders – The request for FY 2005 for the PRNS program includes $15.2 million in ongoing and new funding for best practices and targeted capacity expansion grants to foster increased access to integrated treatment for individuals with co-occurring mental illness and substance abuse disorders. SAMHSA has an important leadership role to play on this issue. NAMI strongly urges this Subcommittee to support expansion of SAMHSA’s activities on this critical priority.
  • Jail Diversion – NAMI is disappointed that the President’s budget does not request continued funding for the $7 million Jail Diversion program at CMHS. NAMI strongly supports the Jail Diversion program and urges continuation of funding in FY 2005.
  • Suicide Prevention – NAMI strongly supports continuation and expansion of CMHS’s best practices grants and contracts to support suicide prevention. The President’s "New Freedom Initiative" Mental Health Commission report contains important recommendations on making suicide prevention a national priority. NAMI supports these recommendations as critical to addressing the estimated 30,000 suicides that occur every year in our country – 90% of which involve a victim with a mental disorder.

National Institute of Mental Health (NIMH) Research Funding

The National Institute of Mental Health (NIMH) is the only federal agency with the main objective of funding biomedical research into serious mental illnesses. Increased funding and focus is needed to achieve the promise of exciting gains in understanding the brain in upcoming years.

NIMH – Smallest Proposed Increase in 8 Years

For FY 2005, the President is proposing a $1.421 billion budget for the NIMH. This is a $39 million increase—2.2 percent—over the amount Congress appropriated for NIMH for FY 2004 ($1.39 billion). While this exceeds the average 0.5% increase for all domestic discretionary spending, it is below the 2.7% increase proposed for all of the National Institutes of Health (NIH) – which would increase to $28.805 billion under the President’s budget. In addition, this proposed increase for NIMH for FY 2005 is below the 3.6% increase that Congress enacted for FY 2004 and far below the 8% and 9% annual increases that were achieved between FY 1998 and 2003.

This minimal budget increase is expected to have a serious impact on the ability of NIMH to sustain ongoing multi-year research grants that have been initiated over the past 3-4 years and fund new grant proposals relevant to serious mental illness. This is especially the case if Congress accepts a proposal being floated by NIH to limit annual "cost of doing research" adjustments to individual grants to 1% per year. NAMI remains very concerned that this coming fall-off in budget increases for NIH does not wipe out the new research that has been undertaken at NIMH in recent years, and take advantage of the significant opportunities to advance treatments and cures for serious mental disorders.

Mr. Chairman, NAMI is deeply grateful for your leadership on this Subcommittee in seeking a strong budget for NIH and NIMH. The bipartisan commitment to scientific research that you and Senator Harkin continue to demonstrate is an example to your colleagues in Congress and in the Administration. We commend you for your amendment on the Senate floor during debate on the FY 2005 budget resolution to increase NIH funding above the President’s request. NAMI urges you and your colleagues to make every effort to fund in NIMH at the "professional judgment" recommendation for FY 2005 -- $1.555 billion, or $172.8 million above the FY 2004 level.

"Roadmap to Recovery and Cure" – NAMI’s Advocacy Goals and Strategies on Mental Illness Research

This month, the NAMI Policy Research Institute is releasing a new report, Roadmap to Recovery and Cure, urging significant increases in the NIMH budget for basic, clinical and health services research focused on serious mental illness. The reality is that dramatic improvements in the lives of individuals with mental illness can be achieved over the next decade if research is expanded and the treatment system reformed and brought into closer alignment with research.

Among the conclusions in Roadmap to Recovery and Cure are that serious mental illness research has been underfunded, compared to other chronic, disabling illnesses, and is insufficiently prioritized at NIMH. The task force also found that psychiatric research has only begun to enter the modern era of biomedical research and requires the development of a strong base of basic and interdisciplinary research, large, policy-relevant clinical trials and services research directly tied to service delivery. It is important to note that all of these are integral to the Bush Administration’s Roadmap to Medical Research initiative that is currently driving research priorities at NIH.

Among the recommendations in this report are:

  • Significant and accountable increases in NIMH funding of basic, clinical and services research focused on serious mental illness--$1 billion over 5 years,
  • Increased application of the NIH’s Roadmap to Medical Research initiative to serious mental illness,
  • Continuation and expansion of clinical trials focused on serious mental illness,
  • Coordination of serious mental illness research, dissemination, and service system policy efforts by the federal government, and
  • Increased training and support of researchers and mental health care providers.

The Case for Increased Federal Investment in Mental Illness Research

  • Further research is imperative if we are to prevent the next generation from suffering. Much has to be learned. The causes and mechanisms of diseases such as schizophrenia and bipolar disorder are mostly unknown. We do not yet have laboratory tests that can diagnose these illnesses. There are no side-effect free treatments. And, of course, there is no primary preventive measure or cure currently available.
  • Treatment is imperfect; it does not work well for all individuals living with these brain diseases. There are no cures for severe mental illnesses, and existing treatments and services shown to be effective are all too often not available to the people who need and deserve them. While steady research-funding gains have been achieved, NAMI believes that severe mental illness research, from the most basic to services research, remains underfunded, given the tremendous scientific opportunities that exist and the severe burden that these diseases present to the public as well as to our families.
  • The public health burden associated with severe mental illness is enormous, accounting for a large percentage of costs imposed by all illnesses in the United States. An independent study by the World Bank and World Health Organization (DALY: Disability Adjusted Life Years) found that four of the top ten causes of disability worldwide are severe mental illnesses: major depression, bipolar disorder, schizophrenia, and obsessive-compulsive disorder, accounting for 25 percent of the total disability resulting from all diseases and injuries.

Where Should Funding at NIMH Be Directed?

  • Greater Focus & Accountability on Severe Mental Illness – NAMI believes that more focus is needed at NIMH on severe mental illness research. NAMI therefore urges Congress to require NIMH to provide an accounting of new and existing research grants broken down by specific illnesses.
  • Basic Neuroscience – NIMH needs to continue progress that has been made in unraveling the mysteries of molecules, genes, and brain interconnections related to higher brain functioning in brain health and serious disease.
  • Treatment Research – Currently there is a lack of understanding about which treatments work best for which patients, in what combination, and with what risks and costs. NIMH has invested in significant research to improve this understanding and it should be continued and expanded in the current budget. Importantly, new treatments must be developed as well.
  • Services Implementation – There are many important, even crucial research questions relevant to the treatment system that serves individuals with severe mental illnesses—ranging from improving the provision of evidence-based care to identifying exactly how much public monies are being spent on a treatment system that more often than not is failing.
  • Consumer and Family Involvement in Research – All of these efforts at NIMH must be done with a greater involvement with and accountability to those patients with severe illnesses and their families. Recent efforts at NIMH have moved in this direction, but more needs to be done to integrate families and patients into annual reporting and strategic planning on research investments and accomplishments.

Conclusion

Chairman Specter, Senator Harkin and members of the Subcommittee, thank you for the opportunity to offer NAMI’s views on your FY 2005 bill.


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