Jim McNulty, President of NAMI, Testifies before Senate Health, Education, Labor and Pensions Subcommittee on Children and Families
October 1, 2001
Chairman Dodd, and members of the Subcommittee, I am Jim McNulty, president of the National Alliance for the Mentally Ill (NAMI), the nation's leading family member and consumer grassroots advocacy organization to improve the lives of persons with severe mental illnesses and their family members. The United States Surgeon General has reported that every year, more than 30,000 Americans take their own lives. Suicide is the eighth-leading cause of death in the United States, and the third among our youth, ages 15 to 24. Most suffer from treatable mental illnesses, biological-based brain disorders that can lead to tragic consequences. The majority suffers from some form of depression. NAMI has long been concerned with the issue of suicide among children and adolescents and applauds this Subcommittee for bringing attention to this issue.
Who is NAMI?
NAMI, the National Alliance for the Mentally Ill, is the leading family member and consumer grassroots membership organization in the nation dedicated to improving the lives of individuals with severe mental illnesses and their family members. NAMI was founded in Madison, Wisconsin in 1979 and currently has over 220,000 members, 50 state organizations and over 1,200 local affiliates. Through these chapters and affiliates in all 50 states, NAMI supports 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.
The Pressing Need for Action
For too long, the needs of children and adolescents experiencing symptoms of mental illnesses and the links to teen suicide have been ignored. United States Surgeon General David Satcher, M.D., Ph.D., released a report on children's mental health in January 2001 that soundly identifies the public health crisis caused by our nation's failure to recognize and treat childhood mental illnesses.
The Surgeon General's Conference on Children's Mental Health: A National Action Agenda, found that in the United States, 1 in 10 children and adolescents have a mental illness severe enough to cause impairment. However in any given year, fewer than 1 in 5 of these children receives needed treatment. According to recent evidence compiled by the World Health Organization, by the year 2020, childhood neuropsychiatric disorders will rise proportionately by over 50 percent, internationally, to become one of the five most common causes of childhood morbidity, mortality, and disability.
Families with children are suffering because of missed opportunities for early identification and the fragmentation of treatment services. NAMI strongly supports many of the identified goals and action steps of the Surgeon General's National Action Agenda for Children's Mental Health that include:
- Promote public awareness of children and adolescents and reduce the stigma associated with mental illness.
- Continue to develop, disseminate, and implement scientifically-proven treatment and early intervention services in the field of children's mental health.
- Improve the assessment and recognition of mental illness in children and adolescents.
- Eliminate racial/ethnic and socioeconomic disparities in access to mental illness treatment.
- Improve the infrastructure for children's mental health services including support for scientifically-proven interventions across professions.
- Increase access to and coordination of quality mental healthcare services.
- Train frontline providers to recognize and manage mental health issues, and educate mental health providers in scientifically-proven treatment services.
- Monitor the access to and coordination of quality mental illness treatment services.
Child and Adolescent Suicide: A National Tragedy
The American Psychiatric Association (APA) reports that suicide is the second leading cause of death among young people ages 15 to 19 years and that every day, 14 young people (ages 15 to 24) commit suicide, or approximately 1 every 100 minutes. The APA has also found that most people who commit suicide have a diagnosable mental illness or substance abuse disorder and that fifty-three percent of young people that take their own lives are abusing substances and the majority have co-occurring disorders.
Although the evidence supporting the crisis of teen suicide is clear, the lack of available and accessible treatment is a major concern. The Surgeon General reports that there is substantial evidence that the nation lacks a unified infrastructure to help these children and many are falling through the cracks. Many NAMI families are aware that, too often, children who are not identified as having mental health problems and who do not receive services end up in the juvenile justice system. Within this system, recent studies have found that fifteen percent of all youth mandated or incarcerated in "boot camps" have a serious mental illness such as bipolar or schizophrenia. Another recently published report indicates that fifty to seventy-five percent of children in juvenile justice institutions are youngsters of color who have never had access to mental health screening or treatment.
Lack of Coordinated Systems of Care Leave Children and Families Vulnerable
NAMI documented this public crisis in a 1999 report that identified systems of mental health care created to address the needs of children and adolescents, and how these systems are failing the children they are meant to serve. This report, Families on the Brink, explains how this lack of care results in potential lasting harm to the affected children and their families and in broad dissatisfaction with treatment options and capacity. As the executive summary points out, "The overall picture is one of major barriers to care, with devastating results for the children and the families.…In more than half the families, fifty-five percent, one of the parents had to change jobs or quit to take care of their ailing offspring. Fifty-nine percent said they felt like they were pushed to the breaking point." Most alarmingly the Families on the Brink report found that twenty-three percent of surveyed parents had been counseled or advised to a counselor relinquishing custody to the state in order to ensure eligibility for care or residential services.
Child and Adolescent Suicide Congressional Response Needed
Mr. Chairman, NAMI recommends that this Committee and Congress take the following steps to address this public health crisis:
- Fully fund the suicide prevention initiative that was authorized by Congress in the Children's Health Act of 2000 (section 3111 of PL 106-310). This important new program calls on SAMHSA, NIMH, CDC, HRSA, and ACF to support evidence based suicide prevention programs. These include timely assessment and treatment for children and adolescents most at risk for suicide and increased integration of suicide prevention strategies with other systems such as education and juvenile justice. NAMI strongly urges Congress to appropriate the full $75 million for this program in FY 2002.
- Create new incentives for states and communities to invest in evidence based screening and assessment tools for children and adolescents with mental illness. The most promising of these evidence-based tools is the Diagnostic Interview Schedule for Children (DISC). The DISC was developed in 1979 at the National Institute of Mental Health and is a comprehensive interview that covers 36 mental health disorders for children and adolescents, using DSM -IV criteria. This evidence-based model can be self-administered using computerized voice files and produces a series of diagnostic reports. This tool can work in conjunction with school-based educational programs that attempt to provide early identification and assessment. Further, it can reduce the stigma of mental illnesses and suicide and teach about mental illness including the risk factors and symptoms.
- NAMI strongly supports passage of the Family Opportunity Act (S 321/HR 600). This legislation, introduced by Senators Chuck Grassley (R-IA) and Edward Kennedy (D-MA) and Representatives Pete Sessions (R-TX) and Henry Waxman (D-CA), is intended to restore hope for children with severe mental illnesses and their families. The Family Opportunity Act would allow states to set up Medicaid buy-in programs for children with severe disabilities so that parents would not be forced to relinquish custody of their children or declare bankruptcy to get coverage for the treatment their child needs. S 321/HR 600 would also establish "Family to Family Health Information Centers" which would assist and support families of children with disabilities and/or special health care needs. These centers, staffed by both parents of children with special needs and professionals, would provide technical assistance and information to families on health care programs and services available and appropriate for children with disabilities and/or special needs.
- Congress should renew The Better Pharmaceuticals for Children Act (S 838) that will expire later this year. This bill will amend the Federal Food, Drug and Cosmetic Act to improve the safety and efficacy of pharmaceuticals for children. Congress should encourage NIMH and private industry funding of basic scientific research on effective interventions that can reduce the risk of suicide among children and adolescents. While there is ample evidence on effective screening and prevention strategies, there is still little understanding on the effects of treatment on at-risk populations. Conducting scientific research and testing new medications to treat severe mental illness for children and adolescents is critical.
- In addition NAMI urges Congress to continue its bipartisan effort to double the budget of the NIH by 2004 to ensure that there are adequate resources for this research.
- Congress should pass S. 543, the Mental Health Equitable Treatment Act of 2001. NAMI greatly appreciates the work of this Committee in favorably reporting out this important legislation on August 1. The risk of suicide will continue to be increased so long as health plans offer discriminatory coverage for the treatment they need. Parity will ensure greater access to the treatment that can save the lives of those most at risk.
This hearing along with the Surgeon General's report has generated long overdue attention to the remarkable absence of appropriate screening, treatment and services for children and adolescents with mental illnesses. Local and national media continue to feature reports and articles confirming the crisis our children face as a result of the failure of a fragmented mental health system. NAMI is grateful to Chairman Dodd, Senator Gregg and the other members of this subcommittee for holding this hearing on teen suicide and giving NAMI an opportunity to submit testimony on this very important issue.