September 27, 2002
Chairman Burton, Representative Waxman and members of the Committee, I am Jim McNulty, President of NAMI-The National Alliance for the Mentally Ill. On behalf of NAMI, I submit these comments for the record. NAMI is deeply concerned that the Committee held the hearing to largely recycle bad science and trivialize the need for early identification and treatment of mental illnesses in children and adolescents. In doing so, the Committee missed a wonderful opportunity to examine childhood mental disorders and emerging scientific consensus about how best to respond to the needs of children who suffer from these illnesses. Public policy involving treatment of Attention Deficit Hyperactivity Disorder (ADHD) and other brain disorders must be founded on science, not science-fiction or religious ideology. Public policy on health issues must be shaped by scientific evidence. The best available research and the most knowledgeable experts should guide congressional oversight and legislative action on the diagnosis and treatment of psychiatric disorders in children.
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, including ADHD. NAMI families know all too well the barriers that exist in accessing quality treatment for their children struggling with mental illnesses, however, these families can also speak of how their lives, and the lives of their children, have been dramatically improved by effective treatment.
Before addressing the content of the hearing, it is critically important to frame NAMI's testimony in the context of the legacy of failure in this country to treat childhood mental illnesses. Also, it is appropriate to address the treatment of ADHD in the broader context of childhood mental illnesses because research shows that 69% of children with ADHD have one or more co-occurring disorders. (NIMH, Multi-modal Treatment Study of Children - MTA, 1999)
Contrary to the suggestion at the hearing that we are overdiagnosing and overtreating children with ADHD in this country, well-documented studies and reports make clear that we have repeatedly failed to provide gravely needed treatment and services to children with ADHD and co-occurring mental illnesses. This country is experiencing a health care crisis as a result of our failure to identify and treat children in need of mental health services. In 2000, the Surgeon General convened a conference of experts and issued a report on children's mental health. The report identified that 1 in 10 children and adolescents in this country suffer from mental illness severe enough to cause impairment. Yet, in any given year, only 1 in 5 children receive mental health services. The unmet need for treatment and services for children remains as high today as it was 20 years ago.
The World Health Organization Global Burden of Disease Study indicates that by the year 2020, childhood neuropsychiatric disorders will rise proportionally by over 50% to become one of the five most common causes of morbidity, mortality, and disability among children.
Our nation lacks a unified infrastructure to address the needs of children and adolescents with mental illnesses and their families. Consequently, families often have nowhere to turn in their hour of greatest need. NAMI is frequently contacted by families across the country who often have nowhere to turn for mental health services for their child when they have exhausted their private insurance benefits for mental health coverage (most insurers place discriminatory caps on mental health benefits). Most of these families do not qualify for Medicaid benefits. These families are often told by state agencies and others that they can access critically needed treatment by relinquishing custody of their child to the state. NAMI's 1999 report - Families on the Brink, The Impact of Ignoring Children with Serious Mental Illness - documented the prevalence of the custody relinquishment problem. In Families on the Brink , 23% of respondents to NAMI's national survey of parents and caregivers, reported being told that they would have to relinquish custody of their child to access services. 20% of the respondents reported they ultimately relinquished custody of their child to the state. This is a well-documented problem that is receiving increasing media attention. Understandably, families are shocked to learn that their family must be torn apart and they must give up custody to access mental health treatment for their child.
Some families also report being told that to access treatment or services for their child, they should either call the police and have their child arrested or leave the child at a hospital or treatment center. An arrest means that the child may receive services through the juvenile justice system and parental abandonment means that the child will be referred to the child welfare system and will most likely receive some treatment.
On the education front, Congress promised to fund the Individuals with Disabilities Education Act (IDEA) at 40%, however has never lived up to that promise. Most schools fail to provide school personnel with basic training and education to understand the early warning signs and symptoms of mental illnesses, despite the high prevalence rates of the disorders. Without an adequate investment in education for students with disabilities, especially those with mental illnesses, and appropriate training for school personnel, we will continue to see unacceptably poor outcomes for these students.
So rather than hold a hearing on the issue of overtreating and overmedicating children with ADHD - for which there is little scientific evidence -- this Committee should focus future efforts on the more immediate crisis of unidentified and untreated mental illnesses in children and adolescents.
Everyday, thousands of families struggle to get treatment and support services for their children with mental illnesses. Unfortunately, many of these children cannot access the treatment and services they need. As a society, we frequently abandon these children and their families who are trying to help them. The tragic consequences of the failure to provide treatment for many children with ADHD and co-occurring disorders are staggering. What happens to children and adolescents with mental illnesses who fail to get treatment? They end up in the criminal justice system where it is estimated that 60-75% of the youth in our country's juvenile justice facilities suffers from a diagnosable mental illness. (Coalition for Juvenile Justice)
The consequences can also be deadly. Suicide is the third leading cause of death in adolescents. (CDC, 1999) The evidence is strong that as many as 90% of children and adolescents who commit suicide have a diagnosable mental disorder. (Surgeon General, 1999).
For children, the failure to diagnose and treat a mental illness early often results in the loss of critical developmental years. Many children fail in school, are unable to develop friendships and become isolated from their peers. Their inability to participate in school results in their failure to earn a diploma and ultimately in the chance to lead an independent and productive life.
Families often face unthinkable stress and financial ruin when a child requires intensive treatment and there is no coverage or programs available to serve the child. Several families testified before Congress about the financial devastation in support of the Family Opportunity Act. Families are also torn apart when they are forced to relinquish custody to secure critically needed treatment and services. This has a dramatic adverse effect on the child being given up and the siblings who often fail to understand why this happens.
Research increasingly is showing that the failure to intervene and provide early treatment for many mental illnesses accelerates the course of the illnesses and may result in increased damage to the functioning of the brain.
Without proper attention and a real commitment for change at the national, state and local levels -- the tragedies that result from unidentified and untreated mental illnesses in children and adolescents will not improve.
The knowledge and tools to help these children recover and thrive are available right now. Attention Deficit Hyperactivity Disorder is one of the most extensively studied childhood mental disorders. There is broad scientific agreement that ADHD is a brain disorder, based on decades of NIMH-sponsored research. In 1999, the U.S. Surgeon General's seminal Report on Mental Health contained an entire chapter on childhood mental disorders, including ADHD. ADHD is a relatively well defined disorder in which a child shows cognitive deficits (particularly difficulties attending to an activity long enough to function successfully) and hyperactive behavior. When appropriately trained professionals perform careful evaluations the disorder can be diagnosed with good reliability. Unfortunately, far too many children never receive this kind of careful evaluation. A lack of insurance coverage and discriminatory caps on mental health coverage, restrictions under managed care, a profound shortage of trained professionals (currently there are approximately 6,300 child and adolescent psychiatrists in this country with a level of need at 32,000), poor training of professionals who work with children -- including school personnel and primary care practitioners - and many other factors result in a failure to identify and intervene with treatment for children with ADHD and co-occurring disorders.
The Surgeon General's report documented broad scientific consensus that multi-modal treatment - medication used together with multiple psychosocial interventions in multiple settings - is the most effective intervention for ADHD. Additionally, both the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry, emphasize the importance of multi-modal treatment, including parent training in diagnosis, treatment and behavior management techniques, educational supports, individual and family counseling and, when necessary, medication. In other words, medications for ADHD are not an "either-or" proposition, but rather an essential component of a good treatment plan.
The most recent and most definitive study of the treatment of ADHD is the NIMH Multi-modal Treatment Study of ADHD. This study compared 14-month outcomes of 579 children randomly assigned to one of four treatment conditions - medication management alone, behavioral treatment alone, a combination of medication and behavioral treatments, and standard treatment in the community. The study demonstrated once again that medication has a substantial positive impact on symptoms and behavior at home and at school. Moreover, the study demonstrated that behavioral strategies have a useful role in effective treatment. These results are completely consistent with the evidence from decades of study.
The Surgeon General included a separate section in the seminal report on mental health to probe the issue of whether there is an overdiagnosis of ADHD or overmedication for the illness in children. Contrary to some of the testimony provided in this hearing, recent reports have found little evidence of either the overdiagnosis of ADHD or the overprescription of stimulant medications. In fact, overall just the opposite is true. Fewer children (2 to 3% of school-aged children) are being treated for ADHD then suffer from it. This suggests that there are many children who could be helped but are not being properly identified, diagnosed or treated.
The available evidence from numerous studies -- examining the issue of whether ADHD is overdiagnosed and whether children are overmedicated - suggests that ADHD is not overdiagnosed across the country, since as many as half of all children with ADHD are not being diagnosed and treated in any given year. (see Report on Emotional & Behavioral Disorders in Youth, Columbia University, Fall 2002 - summarizing the research and studies) NAMI recognizes that overdiagnosis and overmedication likely occurs in certain regions. What is critically needed to address those cases is better education and training for providers and families. There must also be a commitment to address the profound shortage of qualified mental health providers in this country to treat children and adolescents.
Research shows that only 40% of children with well-defined ADHD are receiving special education services provided under the Individuals with Disabilities Education Act (IDEA). In order for children to be successful they must have access to a comprehensive range of evidence-based services, especially those that combine intensive school-based services with access to high-quality mental health treatment, including behavioral therapy, parent training and appropriate medication. (MTA Cooperative Group) Students with access to the proper services and supports achieve greater outcomes in not only daily schoolwork and testing, but also with peer relations and social development. There are some good examples of evidence based practices in our communities and schools, however, these practices often fail to be widely disseminated and implemented.
Mr. Chairman, witnesses at the hearing testified about their concerns related to medicating preschool children. NAMI shares these concerns and believes that any decision to treat preschool children with psychotropic medication requires strong justification and documentation of the failure of other treatment alternatives. Relatively little to no scientific research exists to guide the use of psychiatric medications in pre-school children. It therefore is especially important that children at this age receive a thorough evaluation by well-trained child specialists and that other therapies always be considered. Particularly for very young children, intensive therapy should be provided before considering the use of medication. NAMI has supported the Surgeon General's recommendations to push for more prevention and early intervention services which are fundamental to lowering future health care costs and promoting the opportunity for children with mental illnesses to achieve independence and economic self-sufficiency as adults. Some children manifest the signs and symptoms of a serious mental disorder at an early age. Failure to intervene early can result not only in the loss of a childhood, but also lost potential-and loss of a child's future. For some young children, medication is appropriate and has proven highly effective in dramatically improving the quality of their lives. In some cases, it has saved lives.
Given the unacceptably high number of children and adolescents with ADHD and other mental illnesses who fail to be identified and treated, our focus should be on better education and training for providers, school personnel and families and disseminating the most current research and evidence-based information on ADHD and other mental disorders affecting children. We must address the sad reality that only 1 in 5 children suffering from a mental illness, including ADHD, receives treatment.
NAMI continues to ask Congress to act on the U.S. Surgeon General's call to address the health care crisis in this country by improving early recognition and appropriate identification of mental illnesses within all of the systems serving children and adolescents (schools, primary care, juvenile justice, child welfare and others). Future hearings should focus on ensuring that federal, state and local governments make a real commitment to developing systems that meet the treatment needs of children and adolescents with mental illnesses and their families. It is unacceptable that so many children fall through the cracks.
Congress should keep its promise to provide full funding for IDEA. Congress must make an appropriate investment in the special education system in this country to ensure that children with disabilities, especially those with mental illnesses, are given a fair chance for an appropriate education. NAMI families tell us that school personnel often fail to understand the basics about early-onset mental illnesses. It is hard to imagine how school personnel can be expected to address the education needs of children with mental illnesses without adequate training. We must invest in school-based training so that school personnel can recognize the signs and symptoms of mental illness and can develop the skills to effectively work with these students. Also, schools should make a commitment to the early identification of students with mental health needs early in the school years, just as schools identify students with visual, auditory and other health concerns. High dropout rates among students with mental illnesses are correlated to shortages of qualified personnel.
Congress should increase its commitment to fund research to continue progress in understanding early onset mental illnesses, including ADHD. NAMI supports increases in federal funding for research on childhood mental illnesses and continued research in child psychopharmacology.
Congress should address the profound shortage of qualified mental health providers in this country to serve children and adolescents and their families. This shortage presents a real barrier to children accessing critically-need treatment and services. Families are often told that they must wait 6 months or longer for their child to see a qualified mental health provider.
Congress should focus on promoting awareness of early-onset mental illnesses and recognizing the serious adverse impact that untreated mental illnesses can have on families and reducing the stigma that families often face with a child is diagnosed with a mental illness.
Mr. Chairman, this hearing presented an ideal opportunity for the Committee to engage informed scientists in a thoughtful discussion about the current status of research on ADHD and other childhood mental disorders and how best to properly diagnose and treat these disorders. Unfortunately, the hearing provided an opportunity for those whose quest it is to discredit the very existence of ADHD and the value of medication in treating ADHD and other mental illnesses to further perpetuate the stigma of childhood mental illness. This type of misinformation only serves to further stigmatize mental illnesses and perpetuates the shame that so many families feel when their child suffers from a mental illness. It harms families by making it harder for them to make informed treatment choices for their child.
I would respectfully suggest that the committee focus its attention in the future on why children with these illnesses are not being identified or provided with treatment and services that they so desperately need to succeed in school - and ultimately in their lives.
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