This year celebrates the 15th anniversary of the Americans with Disabilities Act (ADA), signed into law by the elder President Bush in July of 1990. In 2001 President George W. Bush unveiled the New Freedom Initiative, with the goal to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, make choices about their daily lives and participate fully in community life. The country lauded the goals of the New Freedom Initiative, and we continue to see ever-opening access for people with physical disabilities. As visible accommodations become more widespread in our public environment, social perceptions of disability change.
But progress in social understanding for people with mental disabilities has been more elusive. According to the World Health Organization, depression leads to more years of functional impairment than any other illness, and four of the ten leading causes of disability are mental illnesses. Nevertheless, in survey after survey, the stigma surrounding mental illness is a major factor preventing those with treatable mental conditions from getting help and recovering. One survey conducted by the National Mental Health Association revealed that 43 percent of Americans still believe depression is the result of a weak will or a deficit in one’s character. Multiple other stigmatizing beliefs about mental health problems abound, such as that most people with mental illness are dangerous to others, mental illness is feigned or imaginary, mental problems are self-inflicted, and disorders are incurable or outcomes from treatment are poor. These beliefs reflect prejudice not dissimilar from racial, religious or any other kind of prejudice.
Nowhere do the nation’s fears about mental health problems and mental health treatment surface more blatantly than in the controversy created by recommendations from President Bush’s New Freedom Commission on Mental Health (NFC) for adding basic mental health screening to the many other health screenings (hearing, vision, blood lead, anemia, scoliosis, tuberculosis, etc.) children and adolescents receive as part of comprehensive preventive school health programs. The NFC mental health screening recommendations have received support not only from professional groups such as the nation’s major medical associations, the American Psychiatric Association and the American Psychological Association, but also from consumer groups like the National Alliance for the Mentally Ill (NAMI), the country’s largest grassroots self-help and advocacy group for consumers and families affected by mental illness. Nevertheless, opposition groups have launched an aggressive campaign of misinformation, claiming, for example, that the recommendations call for mandatory universal screening without parental consent. (On the contrary, the NFC specifically underscores that parental consent and involvement are crucial for all aspects of screening and treatment.)
The consequences of untreated mental health problems in children and adolescents are not trivial. They include academic failure, school drop out, loss of critical years of learning and development, social isolation, underachievement, poor self-esteem, family stress, and in the most tragic cases aggression and suicide. Suicide is the third-leading cause of death for young people aged 15 to 24; research has shown that more than 80 percent of adolescents who attempt suicide and more than 90 percent of those who complete suicide have diagnosable and treatable mental illnesses. Although many young people who commit suicide have previously attempted to take their lives, less than a quarter have received specialty mental health care. Recent controversies about antidepressants and suicidal thoughts notwithstanding, the rate of suicide in adolescents has significantly declined during the time period of access to the newest class of antidepressant medications and greater knowledge about specific psychotherapies to address suicidal thoughts and behaviors. Without intervention, child and adolescent disorders frequently continue into adulthood, with higher rates of health care problems, poor employment opportunities and poverty. After reviewing the evidence, the NFC concluded that no other illnesses impede so many children so seriously.
Despite such critical outcomes, mental health problems are under-recognized in children and adolescents, and it is estimated that only 20 percent of those who could benefit from treatment receive it. The consequences of our failure to assist children and adolescents with mental health problems can be seen across the country in juvenile detention centers, where 65 percent of boys and 75 percent of girls have one or more identifiable mental illnesses and are not receiving treatment. Research indicates that intervening early can interrupt the negative course of some mental illnesses and reduce long-term disability.
Why does screening for symptoms of mental health problems cause such controversy? Why do requirements for vaccinations, the checking of children’s blood and fluoridation of the water supply in the name of preventive health seem routine, but asking questions about depression brings charges that Big Brother is taking over?
To be fair, legitimate concerns can be raised for every type of health screening program about how the information will be used. The first imperative is that all involved understand the difference between screening and diagnosis. A positive screening test merely indicates that some risk factors are present and further evaluation is needed; a problem requiring treatment may or may not be present. Second, if a problem is identified, schools must not dictate specific medical treatments as a prerequisite for providing the educational services appropriate for a child. For example, sometimes parents do not feel the benefits of medication are worth the risk of side effects for their children, and they retain the right to make those decisions without forfeiting their children’s right to a free, appropriate public school education. Finally, if mental health screening is instituted, it is vital that the families of children identified as needing mental health services be immediately linked to appropriate treatment and provided with comprehensive information about the full range of treatment options and community supports. The entire purpose of screening is to identify individuals who can benefit from early intervention when treatments are more effective and fewer complications are present; screening on its own will not produce an improvement in children’s social, academic and developmental functioning unless we make a commitment to improve access to treatment.
One problem with access to mental health treatment is that millions of families do not have equal health insurance coverage for mental health problems. For several years in a row, Senators Pete Domenici (R-NM) and Edward Kennedy (D-MA) and Representatives Patrick Kennedy (D-RI) and Jim Ramstad (R-MN) have introduced into the Senate and the House respectively the Paul Wellstone Mental Health Parity Act, named after the late senator from Minnesota and champion of mental health rights. The act would require health insurers that choose to provide mental health coverage to use the same co-payments, deductibles and access to providers for mental health benefits as for medical and surgical benefits, without arbitrary differences in the duration of treatment covered. However, despite widespread bipartisan support last session from a supermajority of 243 House cosponsors and 67 senators, oppositional leadership in both chambers prevented the bill from even reaching the floor for debate. In a press conference, House Speaker Dennis Hastert’s response to a question about parity was, “What mental health condition is at parity with a broken leg?” The Speaker later explained that he was “being facetious,” but many viewed his original comment as a slip (Freudian?) demonstrative of remaining prejudices.
Some mental health screening opponents fear that if children are found to have mental problems that would benefit from treatment, they may feel stigmatized or labeled. This is a valid concern but an unfortunate misinterpretation of the intent of the programs under development, such as the screening guidelines drafted by the Illinois Children’s Mental Health Partnership. According to statements from chairperson Barbara Shaw, the guidelines specifically eschew the label mentally ill and focus on more descriptive functional information pointing out types of developmental support a child may need, from parents for example, in areas such as coaching to remediate aggressive behavior.
Unfortunately, however, we do still live in a society that may stigmatize and label despite our efforts to the contrary. But the answer is not to turn away information that could be useful to parents in getting the best help for their children. At one time, other illnesses that are better understood today were highly stigmatizing. For example, people with epilepsy were once thought to be possessed by demons; however, no one would now suggest that children and their families don’t deserve appropriate information and referral to treatment if seizures are suspected.
The answer is to educate, to inform, to chase out the stigma. It’s high time we began to take our obligation toward providing early, informed, preventive mental health care seriously. We simply don’t have a generation to waste.
Gillian Friedman, MD
Managing Health Editor
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