STATEMENT OF JIM MCNULTY
ON BEHALF OF THE NATIONAL ALLIANCE FOR THE MENTALLY ILL
BEFORE THE HOUSE OF REPRESENTATIVES COMMITTEE ON APPROPRIATIONS
SUBCOMMITTEE ON LABOR, HHS, EDUCATION AND RELATED AGENCIES
MAY 20, 2003
Chairman Regula, Representative Obey, and members of the Subcommittee, I am Jim McNulty of Bristol, Rhode Island, President of the National Alliance for the Mentally Ill (NAMI). Like so many NAMI members, mental illness has directly affected my life. In 1986, I was first diagnosed with bipolar disorder, also known as manic-depressive illness. 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. As President Bush noted last year in a speech in New Mexico:
"Millions of Americans, millions, are impaired at work, at school, or at home by episodes of mental illness. Many are disabled by severe and persistent mental problems. These illnesses affect individuals, they affect their families, and they affect our country. As many Americans know, it is incredibly painful to watch someone you love struggle with an illness that affects their mind and their feelings and their relationships with others. We heard stories today in a roundtable discussion about that -- what the struggle means for family. Remarkable treatments exist, and that's good. Yet many people -- too many people -- remain untreated. Some end up addicted to drugs or alcohol. Some end up on the streets, homeless. Others end up in our jails, our prisons, our juvenile detention facilities. Our country must make a commitment: Americans with mental illness deserve our understanding, and they deserve excellent care. They deserve a health care system that treats their illness with the same urgency as a physical illness."
President George W. Bush, April 29, 2002.
In a few weeks, the President’s New Freedom Commission on Mental Health will be coming forward with its final report to the President. NAMI is anxious for this report to build on the important accomplishments this Subcommittee has made in recent years with its substantial investment in biomedical research directed to the most complex organ in the human body, the brain. In NAMI's view, scientific research - made possible by the support of this Subcommittee has laid the foundation for the President’s Commission to establish a renewed commitment for the federal government and states to address both the need for continued research and the development of new treatment for severe mental illness. However, in NAMI’s view it is equally important for this Commission report to address the failure of our fragmented public mental health system to adopt treatment and services that are informed by scientific advance and to help children and adults living with mental illness to achieve recovery. NAMI looks forward to working with this Subcommittee to advancing this forthcoming White House report and ensuring that the relevant federal agencies have the resources to achieve its recommendations.
Severe Mental Illness Research at the NIH
The National Institute of Mental Health (NIMH) is the only federal agency whose main objective is to fund biomedical research into serious mental illnesses. NIMH supports and conducts an integrated program of basic and clinical research and research training in biology, neuroscience, and epidemiology. Research initiatives include programs into the major brain disorders such as schizophrenia, major depression, bipolar disorder, panic disorder, and obsessive-compulsive disorder.
For FY 2004, the President is proposing $1.382 billion for scientific and clinical research at NIMH. This is a $33 million increase over the agency’s FY 2003 appropriation of $1.349 billion. NAMI is very concerned that increases for medical research at NIH in 2004 and 2005 will be held far below the increases Congress enacted from 1998 to 2002 – perhaps as low as 2% (barely enough to cover inflation and below expected increases in the cost of conducting clinical research). This decline in budget increases could have a devastating impact on the ability of NIMH (and NIH as a whole) to sustain the ongoing multi-year research grants that have been initiated over the past 2-3 years. This is especially the case with new research grants that have been initiated in conjunction with NIMH’s new research plan on mood disorders (including new research underway on bipolar disorder). NAMI therefore supports the recommendations of the Ad Hoc Group for Medical Research Funding to add 10% in FY 2004 to the doubled budget of the NIMH (as well as the entire NIH) to sustain the momentum of discovery.
NAMI strongly supports the federal investment in biomedical research into brain disorders and genetics and support for initiatives focused on neural receptors, receptor subtypes, and modulators. NAMI congratulates Congress and President Bush for completing the doubling of NIH in FY 2003 and urges that this commitment to research be sustained in FY2004 and beyond. NAMI also supports greater attention at NIMH on the most serious brain disorders—including schizophrenia, major depression and bipolar disorder—in its research portfolio.
The Case for Increased Federal Investment in Mental Illness Research
- Research is the ultimate source of hope for NAMI consumers and family members. Already, research has yielded tremendous advances, underscored the fact that severe mental illnesses are brain disorders, and provided amazing treatment advances. The results to date have fueled NAMI’s advocacy to end stigma and discrimination against people with severe mental illnesses. And, perhaps more importantly, the results have made recovery a real possibility for individuals who suffer from these chronic, disabling, and not infrequently life-threatening diseases.
- 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. No genes have been indisputably identified. There are no side-effect free treatments. And of course there is no primary preventive measure or cure on the horizon.
- 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. A 1996 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. These brain disorders account for an estimated 20 percent of 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. NIMH’s origins spring from a congressional and public desire to enhance the treatment of severe mental illnesses. Research at all levels should be closely linked, so that advances rapidly translate into better treatment for individuals living with these illnesses. NAMI therefore urges Congress to require NIMH to provide an accounting of new and existing research grants broken down by specific illnesses.
- Mood Disorders Strategic Plan -- NAMI strongly supports full implementation of the NIMH strategic plan for mood disorders research. NAMI believes that NIMH should build on this plan and develop a strategic plan for schizophrenia research that will involve all stake-holders, including researchers in basic, clinical, and services research, providers, payers, policy-makers, consumers, and their family members.
- 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 health and serious disease.
- Bridging of Research and Basic Neuroscience to Behavioral Research and Clinical Study of Severe Mental Illness – While there has been an explosion of basic neuroscience research and a decade long significant increase in psychological studies, often integrated with basic neurosciences, there has been relatively limited integration of the best neuroscience with the clinical investigation of serious brain disorders. The best of neuroscience must be better wed to mental illness research and mental illness studies must win a bigger portion of NIMH’s budget pie.
- Treatment Research – Currently there is a lack of understanding about which treatments work best for which patients, in what combination, and with what risks. NIMH has invested in significant research to improve this understanding and it should be continued and fortified in the current budget. But 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.
- Co-Occurring Mental Illness and Substance Abuse -- NAMI would like to urge that NIMH's colleague institutes, the National Institute on Drug Abuse (NIDA) and the National Institute on Alcohol and Alcoholism (NIAAA) be directed to work cooperatively with NIMH on the pressing public health crisis posed by persons diagnosed with a severe mental illness who have a co-occurring substance abuse disorder. NAMI believes that a large and growing body of scientific evidence is making clear that integrated treatment, as opposed to parallel and sequential treatment, is the most effective means of treating these co-occurring disorders. NAMI urges that NIMH, NIDA and NIAAA should work in partnership to ensure that progress continues in our efforts to better understand co-occurring mental illness and chemical dependency.
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 practice.
CMHS’s largest program is the Mental Health Block Grant (MHBG). In recent years, funding for the MHBG has been increased by more than one-third (up from its FY 1999 appropriation of $288.8 million to $440 million in FY 2003). This important formula grant program to the states supports community-based services to adults and children with severe mental illnesses and persons with a dual diagnosis of mental illness and addictive disorders.
States use their MHBG allocation to support local treatment service programs that include rehabilitation, case management, housing-related supports and other services designed to enhance the recovery and independence of people with mental illness. States allocate funds on the basis of annual plans, developed through input from state Mental Health Planning Councils, that are submitted to the federal Center for Mental Health Services (CMHS). While the MHBG represents only a small portion of overall state and local public mental health spending nationally, it is an important source of funds for programs that focus on the most severely mentally ill in many states.
CMHS, through the Children’s Mental Health Services Program also funds the Comprehensive Community Mental Health Services for Children and Their Families Program that provides grants to public entities providing comprehensive community-based mental health services for children and adolescents with mental illnesses. NAMI strongly supports the federal investment in creating home and community based services for children with mental illnesses and their families. NAMI appreciates the Congressional oversight built into the program to ensure accountability and that children and adolescents with the most serious mental illnesses receive appropriate and evidence-based treatment and services.
Why an increase for the Mental Health Block Grant?
- Despite the recent increases in federal funding, we have witnessed a continued widening of gaps in the public mental illness treatment system in many states. These gaps in the public mental health system are worsening as the current budget crisis facing many states deepens. We are currently witnessing 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 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.
What should an increase in the Mental Health Block Grant be used for?
- As states continue to cut funding for mental illness treatment and supportive services, the MHBG will become an increasingly important source of funding for the states. First and foremost, states should be encouraged to use their MHBG allocation to prevent further cuts in services for children and adults with severe mental illnesses. NAMI also supports targeting any increased funds for the MHBG appropriated in FY 2004 to investment in evidence-based, outreach-oriented service delivery models for persons with severe mental illness in the community. In particular, NAMI is urging to Congress to direct any increase in MHBG funding to evidence-based programs such as assertive community treatment.
Services for Homeless Individuals With Mental Illness
- NAMI supports President Bush’s $50 million request for FY 2004 for the PATH program – a $6.5 million increase above the FY 2003 level. PATH is a formula grant program to the states to support local programs serving homeless persons with severe mental illness. This increase in PATH will help states improve access to treatment and supports for the growing number of homeless with severe mental illnesses. This proposed increase for PATH is also tied to the Bush Administration’s "Samaritan Initiative" to end chronic homelessness over the next decade.
Services in Permanent Supportive Housing
- To make adequate progress toward meeting President Bush’s goal of ending chronic homelessness over the next decade, NAMI supports a new $30 million allocation in FY 2004 within SAMHSA’s Programs of Regional and National Significance PRNS programs for services for people who are chronically homeless. Building on the President’s Samaritan Initiative, these additional funds would be an important down payment toward producing and sustaining 150,000 units of permanent supportive housing. This amount would help at least 6,000 people move off the streets and into permanent supportive housing by funding a portion of the services in supportive housing that would in turn be used to leverage matching commitments from states, local government, faith-based and community-based organizations, and the private sector. Chronically homeless people with severe mental illnesses and co-occurring substance abuse disorders have needs that cross the boundaries of fragmented, categorical service systems. They rarely access the comprehensive supports they need to get and keep housing. Supportive housing provides accessible, coordinated, and flexible services that lead to recovery and reintegration into community life.
Funding for Programs Authorized Under P.L. 106-310
- In 2000, Congress passed legislation reauthorizing all SAMHSA and CMHS programs and authorizing several new programs targeted to adults with severe mental illnesses. NAMI strongly supports funding for these programs in FY 2004: suicide prevention (funded at $3 million in FY 2003), jail diversion (funded at $5 million in FY 2003), services for individuals with co-occurring substance abuse disorders and emergency mental health centers.
- NAMI is also concerned that the Substance Abuse Block Grant is not currently supporting programs serving persons dually diagnosed with mental illness and addictive disorders. Research has demonstrated that integrated treatment, as opposed to parallel collaborative approaches, is the most effective model for serving persons with a dual diagnosis. NAMI therefore supports efforts to direct SAMHSA to use funding from both programs to promote integrated treatment for persons with co-occurring mental illness and addictive disorder.
Ensuring Accountability in CMHS’s Discretionary Programs
- Programs of Regional and National Significance (PRNS) includes funding for the agency’s discretionary activities ($246 million in FY 2003). NAMI supports efforts in Congress to push CMHS to ensure that activities funded through the PRNS account focus on replication of evidence-based programs serving children and adults with the most severe and disabling mental illnesses (e.g., PACT). NAMI urges that particular focus be placed on assisting states in reaching the most vulnerable individuals with severe mental illnesses such as the homeless, individuals with co-occurring substance abuse disorders and those in the criminal justice system. NAMI also supports expanded funding for community action grants (CAGs) directed towards these high priorities (Congress allocated only $1 million for new CAGs in FY 2003).
Mr. Chairman, thank you for the opportunity to offer NAMI's views on FY 2004 funding for programs of critical importance to people with serious brain disorders. NAMI looks forward to working with you in the coming months to educate both the general public and your colleagues in Congress about the critical importance of investment in biomedical research and improved services for children and adults living with severe mental illness and their families.