Wednesday, February 28, 2007

Supports: Summer Camps, Consumer Self-Help/Advocacy & Scientific Advancements

Summer Camp Award
For the second consecutive year, we are able to offer four awards of up to $8,000 each to help alleviate the cost of attendance at specialty summer camps for children with special needs. My son Andrew attended a summer camp for special kids for three years. He greatly enjoyed the experience and social opportunities, which he rarely experienced in our community. This included engaging in enjoyable activities with other kids his age and learning independent living skills.

CHADD is delighted to offer four children this opportunity. Applications are due March 7. The application form is available from A committee of five uncompensated volunteers selected by the CHADD board of directors reviews all applications and makes selections. This is a core component of voluntary health agencies and consumer self-help groups--uncompensated volunteers whose family situations are similar to the applicants doing the hard work on their spare time. It is a value that makes America great.

Consumer Self-Help/Advocacy
A national membership marketing expert with extensive experience working with non-profit organizations recently questioned me about why I characterized CHADD as a consumer self-help and consumer advocacy agency.

For the last decade or more, in the mental health field, persons who “consume” mental health services (adults with mental disorders, their families, and families with children with mental disorders) have referred to themselves as “consumers.” [See the President’s New Freedom Commission on Mental Health report for a discussion of the need to “transform” the entire mental health system to one that is “consumer and family driven.”]

CHADD is not a “health organization” per se, although we are a member of the National Health Council as a “voluntary health agency” (VHA). A VHA is one that is dedicated to a health issue or condition, is governed by an uncompensated volunteer board of directors, and receives support from the public through memberships and donations. Within the President’s Commission concept, CHADD is a “consumer-advocacy and consumer-self-help” group. We do not provide health services. We provide consumer advocacy and consumer-support by building a social movement to support all persons with AD/HD and related disorders.

Neuroscience and AD/HD
A recent issue of the journal Neurology published a National Institute of Neurological Disease and Stroke (NINDS) article on prevalence of neurological illness. Included in the study were autism spectrum disorders, Tourette Syndrome, and seizure disorders, including epilepsy. A CHADD member wrote me asking why AD/HD was not included in the study. As the father of a son with the inattentive form of AD/HD, high functioning autism, and a history of seizures between the ages of 2 to 7, I wondered the same thing. I wrote the Director of the National Institute of Mental Health (NIMH) seeking guidance on this question. Within two days the NIMH director replied.

His letter was very insightful. The traditional boundaries of science between psychiatry and neurology are diminishing as the focus now is on diseases and disorders that “involve abnormal brain activity." NIMH and NINDS "have a long-standing relationship of cooperation and collaboration" and I was told that the National Institutes of Health (NIH) "brain-related Institutes," led by NIMH and NINDS, are currently engaged in a collaboration named the "Neuroscience Blueprint." The relationship of the brain and nervous system is an exciting area of current research. The 2007 priority is "neurodegeneration," the 2008 priority is "neurodevelopment," and the 2009 priority is "neuroplasticity." I can't wait to hear the research results of the work on neurodevelopment (in several years). Each year the science tells us more and more.

Meantime, while the NIH, the world's foremost institution of science, is collaborating on new research to better understand the brain and the nervous system, I continue to receive routine rantings from a physician who preaches that "ADHD is a 100% fraud," that we are "drugging normal children" because AD/HD, bipolar disorder, and other disorders of the brain "don't exist," and that these disorders are "manufactured and invented diseases." Having spent 16 years helping my son overcome his struggles and having worked for years with families dealing with mental and physical disabilities through three national family support organizations, I can to tell you that it is hogwash to say that there is nothing wrong with these children except that they should be “disciplined” and/or put on a “better diet.” Life is hard-enough dealing with my son’s emotions, my emotions, my family's emotions, and the emotions of thousands of CHADD families as we search for meaningful help. The media seems to delight in giving equal time and attention to the institutions of science and the rants of denial. CHADD’s National AD/HD Education Initiative and our CDC recognized and funded National Resource Center on AD/HD will continue to share science based information with the public and our members.

May we find strength, patience, and peace of mind through professional, social, family and natural supports as we struggle with our daily challenges. I sincerely believe that each year the science helps us understand more and more about the brain. And we get better at applying the science to better dealing with these struggles. Thanks to the many scientists who devote their careers to enhancing our knowledge. Part of CHADD’s social movement advocacy is to increase the science and translate it into practice.


1 comment:

Anonymous said...

Thanks for the useful information.

Be Well!