CHADD: a voice for individuals with AD/HD and their familiesAPDA
Anne Teeter Ellison, Ed.D.
“CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder) is the nation’s leading non-profit organization serving individuals with AD/HD and their families.”
Initially founded in 1987 by Dr. Harvey Parker, parents and professionals joined together to advocate for research on the nature and treatment of AD/HD, to disseminate the science of AD/HD to the public, and to advocate for the educational and legal rights of individuals with AD/HD. Today, we enjoy many accomplishments as a result of our collaboration with leading scientists, clinical/medical professionals, legal experts and educators around the globe.
Over the past nineteen years advances in the science of AD/HD has been remarkable. We now have a solid foundation for understanding the biogenetic, neurobiological, and neurochemical mechanisms of AD/HD. Research indicates that problems in behavioral inhibition or self-control are a result of dysfunction in frontal-striatal networks, while other brain regions (basal ganglia including the caudate nucleus and cerebellum) are also implicated. The evidence of genetic transmission of AD/HD, primarily involving the dopamine systems that innervate frontal-striatal regions is well established. Studies estimate that 70-95% of deficits in behavioral inhibition and inattention are genetically transmitted. Investigation of the interaction between environmental factors, subtle brain anomalies and genetic mutations is ongoing. Although not causal, we know traumatic life events, the presence of co-morbid disorders, and other psychosocial stressors (i.e., poverty, family dysfunction) complicate AD/HD. In the future it will be important for us to further clarify these interactions in an effort to create home, school and work environments that are AD/HD friendly and prevent the development of co-existing disorders that are so common in AD/HD. Researchers are beginning to address prevention strategies and these efforts will no doubt lead to more productive, fulfilling lives for persons with AD/HD.
CHADD has been fortunate to have strong relationships with the leading scientists and clinicians investigating and treating AD/HD across the national and international community. These individuals serve on our Professional Advisory Board (PAB), and provide invaluable advice by interpreting and communicating the science of AD/HD. Education is one of our major goals at CHADD, so it is important that we have accurate and up-to-date information which we publish in our fact sheets and other printed materials. Members of he PAB also serve on the editorial board of ATTENTION!â Magazine, contribute articles for the magazine and interpret controversies regarding assessment and treatment of AD/HD. I believe that these ongoing relationships and strong affiliations with the science of AD/HD help us communicate a message that the public can have confidence.
Over the past 15 years, there have been significant changes in federal laws regulating educational services for children and youths with AD/HD. In 1991, the U.S. Department of Education issued a Policy Memorandum with new regulations implementing the Individuals with Disabilities Education Act (IDEA) Amendments and for the first time explicitly incorporated AD/HD within the definition of “Other Health Impaired.” This memorandum provided access to special education services for children with significant impairment as a result of their attention-hyperactivity deficits. Two other federal laws — the Rehabilitation Act of 1973 (RA) and the Americans with Disabilities Act of 1990 (ADA) — prohibit discrimination against individuals with disabilities in higher education and the workplace. Adults with AD/HD may be eligible for protection and accommodations in higher education and the workplace. While protecting access to services and accommodations, we are routinely reminded that implementation of these laws often lags behind their enactment. Through our public policy work, CHADD continues to monitor changes in federal laws in an effort to maintain these legal rights including the Re-Authorization of IDEA (2004).
Working together, persons with AD/HD and their families have a powerful, compelling story to tell. These life stories describe the daily challenges of living with AD/HD. E. Clarke Ross, the CEO of CHADD has emphasized the need for us “to build a social movement, CHADD continues to educate public policy makers emphasizing the lived experience of persons with AD/HD and their families.” Dr. Ross asserts that “CHADD will continue to advocate that consumer and family lived experience becomes an important part of health care decision making. For this reason, my April 2003 and February 2006 ATTENTION!® CEO columns focused on enhancing quality of treatment, including respect of the consumer and family lived experience.” In our effort to advocate for consumer and family driven care, we are bolstered by a number of significant national movements that are summarized in these messages.
Although we have made great strides since 1987, today we face continued attacks from anti-psychiatry groups who perpetuate the false notion that AD/HD is not a real disorder, that there is no science behind AD/HD, and we are needlessly drugging our kids. Persons with other mental health disorders face similar public attacks and misinformation. These attacks stigmatize mental illnesses, and discourage individuals and their families from seeking needed treatment. In an effort to counter these unfounded attacks with science and education, CHADD is working with other advocacy groups (Child and Adolescent Bipolar Foundation, CABF; National Alliance on Mental Illness, NAMI; Federation of Families; National Mental Health Association, NMHA) and professional organizations (American Academy of Child and Adolescent Psychiatry, AACAP; American Academy of Pediatrics, AAP; American Psychiatric Association, APA).
The power of persons with AD/HD and their families working together with researchers, clinical and medical professionals, and other advocacy groups can be formidable. Together we can dispel the myths, misinformation and stigma associated with AD/HD. We look forward to working with our international friends in your efforts to address similar challenges to the AD/HD community.
Phyllis Anne Teeter Ellison, Ed.D., Professor, Department of Educational Psychology; Director of Training, School Psychology Program. University of Wisconsin-Milwaukee, USA.
Dr. Armando Filomeno, who met Dr. Anne Teeter Ellison at CHADD’s 17th Annual International Conference in Dallas, USA, October 2005, thanks CHADD President for this article which he translated into Spanish for APDA’s electronic newsletter nº 11, issued on March 15, 2006.