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Where We Stand

Issues Specific to Children with Brain Disorders

NAMI’s Position (summarized from the NAMI Policy Platform)

NAMI believes that children and adolescents with brain disorders have the right to thrive in nurturing environments, that all children and adolescents with brain disorders deserve to have early diagnoses with appropriate treatments and services targeted to their specific needs, and that children and adolescents with brain disorders should be treated in the community whenever possible with the same expanded opportunities as for adults. NAMI declares that under no circumstances shall families be coerced or forced to relinquish custody of their dependent children with brain disorders in order to obtain care, treatment, and education.

NAMI believes that all children and adolescents with brain disorders have the right to thrive in nurturing environments, deserve to have early diagnoses with appropriate treatments and services targeted to their specific needs, and should be treated with the same expanded opportunities in the community as adults whenever possible. NAMI declares that under no circumstances should families be coerced or forced to relinquish custody of their dependent children with brain disorders in order to obtain care, treatment, or education.

Children and adolescents can and do have severe and persistent mental illnesses. In the United States, one in ten children and adolescents have mental illness severe enough to cause impairment. In any given year, however, fewer than one in five of these children receive needed treatment.

We are facing a public crisis in which the systems of mental health care created to address the needs of children and adolescents are failing them instead. NAMI’s landmark 1999 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. The report's 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."

Understanding the issue

According to recent evidence compiled by the World Health Organization (WHO), by the year 2020, childhood neuropsychiatric disorders internationally will rise proportionately by more than 50 percent to become one of the five most common causes of childhood morbidity, mortality, and disability. Concerns about inappropriate diagnosis—either the over- or underdiagnosis of children's mental health problems—and the availability of evidence-based, scientifically proven treatments and services for children and their families have sparked a national dialogue around these issues. There is sweeping evidence that the nation lacks a unified infrastructure to help these children, and many of them are falling through the cracks. 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.

In December 1999, the Surgeon General released a Report on Mental Health that affirmed several core principles underlying NAMI’s public policy on children’s mental health. The report highlighted the needs in education, research, and service delivery that are important in the treatment of children and adolescents. Highlighted issues were 1) the need for families to be essential partners in the delivery of mental health services for children; 2) the understanding that serious childhood mental illnesses are biologically based illnesses; 3) the lack of treatment options (while one community may have an innovative mental health system for children and adolescents, another state or community may have no available services); 4) the complexity of the system for delivering mental health services to children and their families and the patchwork of providers, interventions, and payers that contribute to the lack of treatment; and 5) the desperate need for appropriately trained child psychiatrists, psychologists, and social workers.

NAMI’s policy goals

In January 2001 the Surgeon General released a National Agenda on Children’s Mental Health. NAMI supports the agenda’s goals and objectives and will work with policymakers to ensure that a better system of care is created for children and families. The goals and objectives are as follows:

family education and recognition of early indicators of potential mental health problems;

increased education of frontline providers, including healthcare professionals, teachers, school counselors, and coaches;

increased training of health care professionals in scientifically proven, state-of-the-art approaches for assessment, treatment, and prevention;

continued scientific research;

connecting research and practice to public policy on access to care;

increased coordination of mental health services for families. (No primary mental healthcare system exists for children and adolescents. Treatment and services are fragmented across many institutions, including, too often, the juvenile justice system.);

reducing the stigma associated with mental illness;

increasing public awareness; and

family and consumer involvement in education and treatment plans, as well as the encouragement of further family advocacy at the local, state, and federal levels.

NAMI will continue to work with the Center for the Advancement of Children's Mental Health to improve identification, assessment, and treatment practices for children with mental disorders.

Federal legislation and oversight needed

NAMI will advocate strongly for the Family Opportunity Act (FOA) in the 107th Congress. This legislation, written 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 FOA 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.

NAMI advocates for major increases in federal funding for research at NIMH, emphasizing children with severe mental illnesses. NAMI supports full funding of programs and services that are focused on screening and treatment for children and adolescents with severe mental illnesses authorized in Public Law 106-310, the Children’s Health Act of 2000.

NAMI will orchestrate targeted technical assistance support to directly ensure two or three juvenile justice mental health screening pilot projects.

NAMI will conduct a review of the progress of state legislation relating to children’s mental health and will tie it to NAMI state and federal interests. State legislative tracking will be monitored and reviewed monthly.

NAMI will continue to push for greater Food and Drug Administration oversight of medications approved for adults (but not yet proven safe for children) when they are used in clinical trials involving children and adolescents.

NAMI will work for parity in the State Children’s’ Health Insurance Program (SCHIP).

NAMI will advocate for full funding of the Individuals with Disabilities Education Act (IDEA) discretionary programs and the Elementary and Secondary Education Act (ESEA). Further, NAMI will pursue the ESEA requirement for training general education teachers and administrators about children’s brain disorders. NAMI opposes any efforts to weaken due-process protections in IDEA.

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