As you consider your end-of-the-year charitable giving, I hope you will consider CHADD. We depend on our 14,000 members and individual donors to finance our core staff and operations. We supplement these operations with third-party funds, our annual conference, and sales of products.
There are thousands of wonderful charitable organizations. If you are concerned with learning disability, developmental disability, mental health issues, and helping adults live a full and happy life, CHADD may be the place for an end-of-the-year gift. Our services and programs are described on our Web site (www.chadd.org). Our objective is to build a social movement that provides the supports that people need to be successful and happy.
Here are some questions you should ask any charity, and here are our answers:
1. Does the organization post its Internal Revenue Service 990 return on its Web site? They should, in order to meet charitable standards of public transparency. For CHADD's IRS 990, go to www.chadd.org and go to the "About CHADD" section and "Reports," or click here.
2. Does the organization use an independent auditor to annually analyze the financial integrity of its financial affairs and is the audit available to the public? CHADD has an independent financial audit by Squire, Lemkin, and O'Brien. Because we post the IRS 990 return on our Web site, we do not post the very similar audit. But the audit is available upon request.
3. Does the organization tell you how much of their expenses are spent for programs, how much for management, and how much for fundraising? These data are included in the IRS 990. For CHADD, in the last fiscal year (which ended June 30, 2007), 83.45% of our expenditures were devoted to services and programs for persons with AD/HD and related disorders. We spent 9.78% to manage and have the board govern the association and we spent 6.76% on fundraising.
4. Does the organization meet independent national standards of accountability for nonprofit organizations? CHADD does. We not only meet the federal government's Combined Federal Campaign standards, but we meet the more rigorous National Health Council Standards of Excellence for voluntary health agencies, and we meet the nation's gold standard for independent accountability—the Better Business Bureau Wise Giving Alliance certification.
5. Does the organization post its board of directors, professional advisory board members (if applicable), and annual reports on its Web site? We do; go to our Web site and see "About CHADD"; our annual report content and format meet the National Health Council and Better Business Bureau standards.
6. Does the organization receive corporate support and does it publicly report this support? CHADD does. This is not a requirement of the IRS, NHC, BBB, or CFC. We post a summary of total revenue support and the exact dollars and composition of our revenues from pharmaceutical corporations (see www.chadd.org; go to "About CHADD" and "Reports" or click here. For the fiscal year that just ended, 26% of our revenue ($1,169,000) was derived from corporate donations. These funds support many important programs, including our summer camp scholarship program, young scientists scholarship award, recognition award for individual authors of Journal of Attention Deficit Disorders family-oriented articles, conferences, educational activities, and parent-to-parent training.
When CHADD recently objected to a news media commentary that AD/HD was a historic fraud because AD/HD does not exist, and when we recently objected to a school district sending home with all children in the district a warning that most children diagnosed with AD/HD don't have a problem and are labeled mentally ill, a leading anti-psychiatry group that denies the existence of all mental disorders, including AD/HD, branded CHADD a "front group misleading parents" because we receive financial support from pharmaceutical companies. We receive corporate financial support to build, grow, and support programs and services to persons with AD/HD and related services. We believe that America's corporations have a charitable obligation, and the CHADD board of directors ensures that these funds are completely independently administered by CHADD. We believe in diversification of revenue. Our board restricts pharmaceutical funding to no more than 30% of our revenue.
We publicize the published science of agencies of government and professional societies. We publicize the science-based multimodal treatment of AD/HD, defined for children and adolescents as parent and child education about the diagnosis and treatment, behavior management techniques, medication, and school programming and supports. Treatment should be tailored to the unique needs of each child and family. Medications are not effective for all children. Medication creates side effects for some children and some of the side effects are serious. But for the average or typical child with more substantial AD/HD, medication is part of a multimodal treatment program. This is not a "front" argument. This is a statement of the published science as stated by the unanimous consent of the CHADD professional advisory board.
Thank you for considering end-of-the-year financial support for the programs and services offered by CHADD.
Clarke
Monday, December 10, 2007
Tuesday, November 27, 2007
Learning Continues, Even During Thanksgiving
My son Andrew, age 17, was home from school for eight days for Thanksgiving. This was a wonderful week. Andrew played with his longtime best buddy. He slept late. He enjoyed watching sports events and playing electronic games. He enjoyed visiting with various cousins for four days. We greeted at church. We caught up on his thoughts. He (and I) ate lots of goodies. And he had to prepare a two-page editorial commentary on a current news event. It dampened the holiday a little, but learning never ends.
When we think back on the most positive experiences in life, there are always the great teachers. When we think about the most miserable experiences that we survived, for many of us there are teachers. This is so evident and important that the National Alliance on Mental Illness (NAMI) operates a program titled, Parents and Teachers as Allies (PTasA). CHADD is in the process of translating our successful Educators' Manual on AD/HD into a six-hour, three-component in-service training program for teachers. A team of volunteers developed the manual and is developing the in-service program. Charitable organizations are so fortunate to have volunteers contributing their passion and knowledge without pay. We will be field testing the in-service program during 2008 and will officially launch it at our next annual conference, to be held in Anaheim, November 13-15, 2008.
Two weeks ago we held our annual conference outside Washington, DC, with 1,600 total attendees. We took roughly 600 attendees to Capitol Hill to meet with their members of Congress and they focused on the reality of living with AD/HD. We sold out our 20th anniversary gala dinner at 680 people; the event featured James Carville speaking about the need for a truly individualized education that respects the learning needs and style of every child, and talking about his AD/HD and his daughter's AD/HD. Saturday sessions focused on the needs of teachers to be successful in the classroom: “Behavioral Strategies for the Classroom,” “Using Evidence-Based Strategies to Teach the Student with AD/HD and Learning Disabilities,” “Teens Talk: A Training Program for Middle and High School Teachers,” and “Family-School Success,” among others. During the closing plenary session, Bob Brooks, PhD, spoke on “Discarding Myths, Nurturing Resilience” through a strengths-based approach to raising and educating children. Bob is always a wonderfully inspiring speaker. I told him in a thank-you note that I wish every teacher in America could hear his presentation and be personally tutored by him. Staying focused on what each child does well really builds self-esteem.
I hope you enjoyed your Thanksgiving. I did.
Clarke
When we think back on the most positive experiences in life, there are always the great teachers. When we think about the most miserable experiences that we survived, for many of us there are teachers. This is so evident and important that the National Alliance on Mental Illness (NAMI) operates a program titled, Parents and Teachers as Allies (PTasA). CHADD is in the process of translating our successful Educators' Manual on AD/HD into a six-hour, three-component in-service training program for teachers. A team of volunteers developed the manual and is developing the in-service program. Charitable organizations are so fortunate to have volunteers contributing their passion and knowledge without pay. We will be field testing the in-service program during 2008 and will officially launch it at our next annual conference, to be held in Anaheim, November 13-15, 2008.
Two weeks ago we held our annual conference outside Washington, DC, with 1,600 total attendees. We took roughly 600 attendees to Capitol Hill to meet with their members of Congress and they focused on the reality of living with AD/HD. We sold out our 20th anniversary gala dinner at 680 people; the event featured James Carville speaking about the need for a truly individualized education that respects the learning needs and style of every child, and talking about his AD/HD and his daughter's AD/HD. Saturday sessions focused on the needs of teachers to be successful in the classroom: “Behavioral Strategies for the Classroom,” “Using Evidence-Based Strategies to Teach the Student with AD/HD and Learning Disabilities,” “Teens Talk: A Training Program for Middle and High School Teachers,” and “Family-School Success,” among others. During the closing plenary session, Bob Brooks, PhD, spoke on “Discarding Myths, Nurturing Resilience” through a strengths-based approach to raising and educating children. Bob is always a wonderfully inspiring speaker. I told him in a thank-you note that I wish every teacher in America could hear his presentation and be personally tutored by him. Staying focused on what each child does well really builds self-esteem.
I hope you enjoyed your Thanksgiving. I did.
Clarke
Monday, November 19, 2007
AD/HD is Real and the Earth is Round
MSN UK News Editor Laura J. Snook recently wrote an opinion piece on AD/HD entitled “High on life: The biggest health care fraud in history.” Below is CHADD’s response to Ms. Snook’s misinformation, which we posted on the MSN UK Web site.
AD/HD is Real and the Earth is Round
Laura Snook’s piece is a prime example of the types of misinformation that can be disseminated on the Internet through what are otherwise reputable Web sites. Practically all of the assertions that she makes in this story about AD/HD are inaccurate and completely unscientific.
It is worth noting that Ms. Snook chose to reach back several thousand years to quote Hippocrates about AD/HD, when she could have highlighted the mountain of evidence in recent years from government and academic researchers that shows AD/HD is a real neurobiological disorder that can have devastating consequences if left untreated.
In fact, Ms. Snook did not reference one single researcher who has had his or her work on the subject published in a peer-reviewed journal. Instead, she relied on anecdotal information and urban legends (We’re drugging the Tom Sawyers again!) to make her point. It’s quite interesting that even she unwittingly provides numbers in her story that clearly show that a considerable number of people go untreated.
True, many children can at times demonstrate inattentiveness, restlessness, forgetfulness, and hyperactivity. That is not necessarily AD/HD. But for millions of children these symptoms can become so severe that they can lead to, among other things, school failure, car accidents and even incarceration. Later in life they can interfere with employment, relationships, and general well-being.
As the father of a 17-year-old son with AD/HD and co-occurring challenges, I know the disorder can make every day a struggle for happiness and success. Ms. Snook declares that she will never be a parent, but those of us with children want what is best for them. Professional, community, faith-based, family, and peer supports are helpful to us. Ideological declarations about Hippocrates, on the other hand, are not.
The best in scientific research, including recent study findings, shows us that a combination of medication, behavioral management, parent/child education about the disorder, educational adaptations, and parent training are all important to effectively treating the disorder.
Anyone interested in information that is more recent than vague comments from over 2,000 years ago, can visit the Web sites of the following U.S. organizations and government institutions: CHADD, the National Resource Center on AD/HD, a program of CHADD, the National Alliance on Mental Illness, the National Institute of Mental Health, and the Centers for Disease Control and Prevention.
In the meantime, it is our hope that Ms. Snook will refrain from relying on antiquated information, urban legends, and emotional arguments to address questions that have been answered by recent scientific studies. We’re afraid she will soon be quoting people from the Middle Ages about the shape of the earth!
E. Clarke Ross, DPA
Chief Executive Officer
Children & Adults with Attention-Deficit/Hyperactivity Disorder www.chadd.org
AD/HD is Real and the Earth is Round
Laura Snook’s piece is a prime example of the types of misinformation that can be disseminated on the Internet through what are otherwise reputable Web sites. Practically all of the assertions that she makes in this story about AD/HD are inaccurate and completely unscientific.
It is worth noting that Ms. Snook chose to reach back several thousand years to quote Hippocrates about AD/HD, when she could have highlighted the mountain of evidence in recent years from government and academic researchers that shows AD/HD is a real neurobiological disorder that can have devastating consequences if left untreated.
In fact, Ms. Snook did not reference one single researcher who has had his or her work on the subject published in a peer-reviewed journal. Instead, she relied on anecdotal information and urban legends (We’re drugging the Tom Sawyers again!) to make her point. It’s quite interesting that even she unwittingly provides numbers in her story that clearly show that a considerable number of people go untreated.
True, many children can at times demonstrate inattentiveness, restlessness, forgetfulness, and hyperactivity. That is not necessarily AD/HD. But for millions of children these symptoms can become so severe that they can lead to, among other things, school failure, car accidents and even incarceration. Later in life they can interfere with employment, relationships, and general well-being.
As the father of a 17-year-old son with AD/HD and co-occurring challenges, I know the disorder can make every day a struggle for happiness and success. Ms. Snook declares that she will never be a parent, but those of us with children want what is best for them. Professional, community, faith-based, family, and peer supports are helpful to us. Ideological declarations about Hippocrates, on the other hand, are not.
The best in scientific research, including recent study findings, shows us that a combination of medication, behavioral management, parent/child education about the disorder, educational adaptations, and parent training are all important to effectively treating the disorder.
Anyone interested in information that is more recent than vague comments from over 2,000 years ago, can visit the Web sites of the following U.S. organizations and government institutions: CHADD, the National Resource Center on AD/HD, a program of CHADD, the National Alliance on Mental Illness, the National Institute of Mental Health, and the Centers for Disease Control and Prevention.
In the meantime, it is our hope that Ms. Snook will refrain from relying on antiquated information, urban legends, and emotional arguments to address questions that have been answered by recent scientific studies. We’re afraid she will soon be quoting people from the Middle Ages about the shape of the earth!
E. Clarke Ross, DPA
Chief Executive Officer
Children & Adults with Attention-Deficit/Hyperactivity Disorder www.chadd.org
Wednesday, October 24, 2007
Promoting Wellness
A few weeks ago our president-elect, Marie Paxson, attended a U.S. Center for Mental Health Services (CMHS) conference on promoting wellness for persons with mental illness. The conference is developing a national plan, vision, and pledge for promoting wellness for persons with mental illness. Components of wellness include optimal health, happiness, recovery, and a full and satisfying life. CHADD will be involved in this promotion.
A major objective of the President's New Freedom Commission on Mental Health is the promotion of "recovery" from mental illness. During the coming months CHADD will begin, with our professional advisory board and adults with AD/HD, to conceptualize the application of the "recovery" philosophy to AD/HD. In 2006, CMHS defined "mental health recovery" as "a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential."
Even though we are overwhelmed with preparing for our annual conference—including taking a thousand people to the U.S. Congress to discuss the reality and meaning of AD/HD—celebrating our 20 years with many of the CHADD Hall of Fame scientists, and including this year a special track for teachers, our communications staff is working on the December Attention magazine. One of the articles discusses the CHADD teen program with the U.S. Golf Association and Professional Golfers Association to teach teens to play golf, in order to promote fun, self-esteem, as well as dealing with the symptoms of AD/HD. This is an effort to promote wellness.
This coming Sunday, a member of CHADD’s national board of directors—Rob Tudisco—will participate in the Washington, DC Marine Corps Marathon. Rob is running under a CHADD banner to raise funds for the CHADD Matt Cohen Membership Support Fund. In his New York community, Rob is also organizing a running program for children with AD/HD. Here is another effort to promote wellness.
This past weekend my wife and I participated in fall parents' weekend at our son’s school. Andrew just turned 17. One of the topics we discussed was Andrew's participation in a July 2008 school-based summer program. For the past two years CHADD has been fortunate to have corporate support to operate a summer camp scholarship program, in order to promote happiness, skills, and wellness. A previous CEO blog (July 5, 2007) discussed the value of summer programs. A school-based summer program is based on the assumption of the "cycle of regression of skills," both academic and social, while beginning to deal with vocational and independent living skill development. For many kids with special needs, a three-month summer lacking structured support results in loss of learned skills. A structured six-week program, in the middle of the three months of summer, at a school location with friends and known faculty, is intended to continue consistency in academic and social development, while having fun—another example of promoting wellness.
Many of you know that Andrew and I love baseball. During the past year, we made three trips to see professional baseball, including to spring training. We bond through this enjoyment and it promotes our wellness.
Raising a child with special needs is a challenge. We have the professional treatment needs. We have educational support and accommodation needs. We need a healthy and stable array of community supports, such as family, community, and for many of us, faith communities. We need activities to promote wellness and a few examples are described here. CHADD will continue to promote wellness, including safe and secure environments and good healthy nutrition, as we also advocate professional and school-based supports.
I hope to see many of you at our annual conference. I am pleased to report that, as of today, in the number of registrations we are ahead of last year at this point in time, and CHADD's 20th anniversary conference should be exciting and fun.
Clarke
A major objective of the President's New Freedom Commission on Mental Health is the promotion of "recovery" from mental illness. During the coming months CHADD will begin, with our professional advisory board and adults with AD/HD, to conceptualize the application of the "recovery" philosophy to AD/HD. In 2006, CMHS defined "mental health recovery" as "a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential."
Even though we are overwhelmed with preparing for our annual conference—including taking a thousand people to the U.S. Congress to discuss the reality and meaning of AD/HD—celebrating our 20 years with many of the CHADD Hall of Fame scientists, and including this year a special track for teachers, our communications staff is working on the December Attention magazine. One of the articles discusses the CHADD teen program with the U.S. Golf Association and Professional Golfers Association to teach teens to play golf, in order to promote fun, self-esteem, as well as dealing with the symptoms of AD/HD. This is an effort to promote wellness.
This coming Sunday, a member of CHADD’s national board of directors—Rob Tudisco—will participate in the Washington, DC Marine Corps Marathon. Rob is running under a CHADD banner to raise funds for the CHADD Matt Cohen Membership Support Fund. In his New York community, Rob is also organizing a running program for children with AD/HD. Here is another effort to promote wellness.
This past weekend my wife and I participated in fall parents' weekend at our son’s school. Andrew just turned 17. One of the topics we discussed was Andrew's participation in a July 2008 school-based summer program. For the past two years CHADD has been fortunate to have corporate support to operate a summer camp scholarship program, in order to promote happiness, skills, and wellness. A previous CEO blog (July 5, 2007) discussed the value of summer programs. A school-based summer program is based on the assumption of the "cycle of regression of skills," both academic and social, while beginning to deal with vocational and independent living skill development. For many kids with special needs, a three-month summer lacking structured support results in loss of learned skills. A structured six-week program, in the middle of the three months of summer, at a school location with friends and known faculty, is intended to continue consistency in academic and social development, while having fun—another example of promoting wellness.
Many of you know that Andrew and I love baseball. During the past year, we made three trips to see professional baseball, including to spring training. We bond through this enjoyment and it promotes our wellness.
Raising a child with special needs is a challenge. We have the professional treatment needs. We have educational support and accommodation needs. We need a healthy and stable array of community supports, such as family, community, and for many of us, faith communities. We need activities to promote wellness and a few examples are described here. CHADD will continue to promote wellness, including safe and secure environments and good healthy nutrition, as we also advocate professional and school-based supports.
I hope to see many of you at our annual conference. I am pleased to report that, as of today, in the number of registrations we are ahead of last year at this point in time, and CHADD's 20th anniversary conference should be exciting and fun.
Clarke
Friday, October 12, 2007
Sorting Out Messages About Parenting
Numerous studies have documented the stress and unique challenges of raising a child with special needs. As the father of a seventeen-year-old with the inattentive form of AD/HD and co-occurring disorders, I can share stories. We want what every parent wants for their child—success in meeting society's expectations and happiness in daily life. The disability of the child complicates the achievement of these objectives. The views of others about us as parents frequently complicate our work.
In the last two weeks, I have experienced several different messages about being a parent of a child with AD/HD. These experiences reinforce the added burden we face as parents in dealing with these challenges.
Two nights ago I attended my local CHADD chapter monthly meeting. A university research expert spoke about the impact of parental mental health on assisting children with AD/HD. It was an excellent presentation, although I was initially put off by the researcher's need for professional jargon, as in discussing the "psychopathology" of us parents. Researchers just don't appreciate how off-putting is such jargon, which usually sends a negative message, to real persons with AD/HD and their family members.
One message is the added difficulty parents who have AD/HD have in parenting a child with AD/HD. The researcher described the interplay between parenting expectations and needs, parents with mental health challenges, children with AD/HD, and other factors such as marital problems. The researcher also discussed the prevalence of maternal depression and how this further complicates parenting. As with most research on parents, most of the parents studied were the mothers.
The researcher did not discuss the role of natural supports—such as family, community, and faith. Neither did she discuss concepts of resilience. But we heard the message of added difficulties for some parents with their own challenges. The speaker reviewed a program to help mothers with depression. Its four interventions are ones that would help most of us who are not depressed: relaxation, increase in pleasant activities, constructive thinking orientation, and social skills and assertiveness training.
The great thing about CHADD support groups is the opportunity for parent peers (and other age-group peers) to chat together in groups about what they heard and how what they heard relates to their own lived experiences. This is a virtue and strength of our family movement.
Two weeks ago CHADD wrote the editor of the Harvard Mental Health Letter challenging their observation that parents cause hyperactivity in their child. And this was Harvard University, one of the world's leading research programs. I responded by writing a letter to their editor, observing that: "Parents are not to blame for their children’s attention-deficit/hyperactivity disorder, nor for any other neurologically-based disability. Parenting styles, while they do vary, are not the cause of AD/HD. Parenting styles can complicate and undermine consistent and successful behavior management programs. Statements such as the above reinforce the stigma of AD/HD and the stereotype claiming children with AD/HD have poor parents."
Last Friday, at 4:00 pm, before leaving for a holiday weekend (I missed the holiday), we learned from one of our CHADD Virginia groups that the Portsmouth School District had sent home with each of their over 14,000 students a "WARNING" statement that "Misdiagnosing and Psychiatric Drugging of Children are Violations of Human Rights."
Imagine being a child with AD/HD or any mental disorder and getting a note to take to your parents stating that medications to treat AD/HD cause "suicidal behavior, psychosis, hostility, aggression, heart problems, disturbed sexual function, and headaches" with no understanding of the frequency of possible side effects and benefits of medication treatment. Imagine being a child or parent and reading: "When you agree that you believe your child has AD/HD, you are agreeing that you believe the child is mentally ill."
CHADD is working with a group of its sister national organizations to share science-based information with the Portsmouth school authorities. Science—statements by the Centers for Disease Control and Prevention, National Institute of Mental Health, U.S. Surgeon General, American Medical Association, American Academy of Pediatrics, and American Academy of Child and Adolescent Psychiatry, among others. We will post our statement on our Web site. Imagine parents and children receiving these anti-psychiatry messages from your school. We obviously have much work to do to help educate the public about AD/HD.
Several years ago I testified before a U.S. House of Representatives committee on the family perspective of living with AD/HD. That hearing was organized by an anti-psychiatry movement leader on behalf of a member of Congress. The anti-psychiatry groups were going on and on with their standard messages—AD/HD is made up and a fraud, medications ruin a person's brain for life, and so forth, when a soft-spoken member of the House, Virginia Republican Jo Ann Davis, spoke up for the first time in a public forum about AD/HD.
Rep. Davis did not confront or challenge the anti-psychiatry thinkers, but she did publicly reveal that one of her sons was diagnosed many years ago with AD/HD and had been successfully treated. She said that for her family, a correct diagnosis and professional treatment made a difference in helping her son become a success. Upon her revelation, the dynamic of the entire hearing changed. The next year she co-hosted a CHADD briefing for members of the House on the published science of AD/HD. Sadly, on Saturday, I read that Rep. Davis died last week of breast cancer. CHADD offers our respect and condolences to the Davis family.
We receive many different messages about being a parent of a child with AD/HD. These are just a few messages I experienced in the last two weeks. CHADD works to build public understanding and a support network to make it less burdensome to parent a child with AD/HD. We can't eliminate all challenges, but we can hopefully make it a little less burdensome. I wish you well in dealing with your own stress. It is daunting.
Clarke
In the last two weeks, I have experienced several different messages about being a parent of a child with AD/HD. These experiences reinforce the added burden we face as parents in dealing with these challenges.
Two nights ago I attended my local CHADD chapter monthly meeting. A university research expert spoke about the impact of parental mental health on assisting children with AD/HD. It was an excellent presentation, although I was initially put off by the researcher's need for professional jargon, as in discussing the "psychopathology" of us parents. Researchers just don't appreciate how off-putting is such jargon, which usually sends a negative message, to real persons with AD/HD and their family members.
One message is the added difficulty parents who have AD/HD have in parenting a child with AD/HD. The researcher described the interplay between parenting expectations and needs, parents with mental health challenges, children with AD/HD, and other factors such as marital problems. The researcher also discussed the prevalence of maternal depression and how this further complicates parenting. As with most research on parents, most of the parents studied were the mothers.
The researcher did not discuss the role of natural supports—such as family, community, and faith. Neither did she discuss concepts of resilience. But we heard the message of added difficulties for some parents with their own challenges. The speaker reviewed a program to help mothers with depression. Its four interventions are ones that would help most of us who are not depressed: relaxation, increase in pleasant activities, constructive thinking orientation, and social skills and assertiveness training.
The great thing about CHADD support groups is the opportunity for parent peers (and other age-group peers) to chat together in groups about what they heard and how what they heard relates to their own lived experiences. This is a virtue and strength of our family movement.
Two weeks ago CHADD wrote the editor of the Harvard Mental Health Letter challenging their observation that parents cause hyperactivity in their child. And this was Harvard University, one of the world's leading research programs. I responded by writing a letter to their editor, observing that: "Parents are not to blame for their children’s attention-deficit/hyperactivity disorder, nor for any other neurologically-based disability. Parenting styles, while they do vary, are not the cause of AD/HD. Parenting styles can complicate and undermine consistent and successful behavior management programs. Statements such as the above reinforce the stigma of AD/HD and the stereotype claiming children with AD/HD have poor parents."
Last Friday, at 4:00 pm, before leaving for a holiday weekend (I missed the holiday), we learned from one of our CHADD Virginia groups that the Portsmouth School District had sent home with each of their over 14,000 students a "WARNING" statement that "Misdiagnosing and Psychiatric Drugging of Children are Violations of Human Rights."
Imagine being a child with AD/HD or any mental disorder and getting a note to take to your parents stating that medications to treat AD/HD cause "suicidal behavior, psychosis, hostility, aggression, heart problems, disturbed sexual function, and headaches" with no understanding of the frequency of possible side effects and benefits of medication treatment. Imagine being a child or parent and reading: "When you agree that you believe your child has AD/HD, you are agreeing that you believe the child is mentally ill."
CHADD is working with a group of its sister national organizations to share science-based information with the Portsmouth school authorities. Science—statements by the Centers for Disease Control and Prevention, National Institute of Mental Health, U.S. Surgeon General, American Medical Association, American Academy of Pediatrics, and American Academy of Child and Adolescent Psychiatry, among others. We will post our statement on our Web site. Imagine parents and children receiving these anti-psychiatry messages from your school. We obviously have much work to do to help educate the public about AD/HD.
Several years ago I testified before a U.S. House of Representatives committee on the family perspective of living with AD/HD. That hearing was organized by an anti-psychiatry movement leader on behalf of a member of Congress. The anti-psychiatry groups were going on and on with their standard messages—AD/HD is made up and a fraud, medications ruin a person's brain for life, and so forth, when a soft-spoken member of the House, Virginia Republican Jo Ann Davis, spoke up for the first time in a public forum about AD/HD.
Rep. Davis did not confront or challenge the anti-psychiatry thinkers, but she did publicly reveal that one of her sons was diagnosed many years ago with AD/HD and had been successfully treated. She said that for her family, a correct diagnosis and professional treatment made a difference in helping her son become a success. Upon her revelation, the dynamic of the entire hearing changed. The next year she co-hosted a CHADD briefing for members of the House on the published science of AD/HD. Sadly, on Saturday, I read that Rep. Davis died last week of breast cancer. CHADD offers our respect and condolences to the Davis family.
We receive many different messages about being a parent of a child with AD/HD. These are just a few messages I experienced in the last two weeks. CHADD works to build public understanding and a support network to make it less burdensome to parent a child with AD/HD. We can't eliminate all challenges, but we can hopefully make it a little less burdensome. I wish you well in dealing with your own stress. It is daunting.
Clarke
Thursday, September 27, 2007
Contributing to a Social Movement
Did you ever have one of those periods of time when you constantly are on the run, you are accomplishing a lot, and you are exhausted? Welcome to the CHADD national office right now.
In addition to preparing for our annual international conference—which typically draws 1,200-1,400 attendees—preparations for this year’s conference include organizing appointments for all attendees with their U.S. Congressional delegations, and organizing and hosting our 20th anniversary gala dinner celebration. Almost every week during the past month, major academic studies on AD/HD have been published. CHADD must analyze and help publicize these studies, and respond to media portrayals. Thousands of inquiries pour into our National Resource Center on AD/HD. We are constantly striving to increase our services to our members and our community affiliate leaders. We just made the Web site login process easier. We are carefully preparing our regular communications and public education materials, such as Attention magazine, CHADDNotes, and NRC News. We are conducting a forum entirely in Spanish for a targeted community. Congress is considering legislation that would impact AD/HD and CHADD is actively involved. We are committed, active, and tired.
This year we mark CHADD’s twentieth anniversary and celebrate the tremendous change over the last two decades for people living with attention-deficit/hyperactivity disorder (AD/HD). Thanks to an incredible social movement, made up of people like you, we have influenced public policy, shaped public perceptions and successfully raised awareness about a disorder that, if left untreated, can have devastating consequences.
Despite the progress we have realized, we nonetheless have an incredible amount of work ahead of us. There is a formidable anti-mental health campaign that would like nothing better than to undo all of our accomplishments and turn the clock back on how our country views and deals with people with AD/HD and other mental health disorders. To beat back many of these efforts and to continue to move ahead with our science-based message, we need your help.
Want an example of some of our challenges? Consider this…
This month the Archives of Pediatrics & Adolescent Medicine features a study (similar to findings from studies produced by the CDC and Mayo Clinic) that reports a prevalence rate of 8.7 percent for children 8 to 15 years old. Disturbingly, the research also found that fewer than half of those with the disorder were diagnosed and receiving treatment. Because the consequences of untreated AD/HD are potentially so severe, this study is an important reminder that we must continue to raise awareness with medical professionals, the public, policymakers and educators.
Yet, to look at the bills being proposed and debated in statehouses across the country, one could easily walk away with a different impression altogether. Many state legislatures are actually considering and voting on bills that would have the effect of preventing teachers from communicating to parents about behavior and learning patterns they observe in the classroom. Teachers, ever fearful of lawsuits, are becoming increasingly guarded about what they report to parents. Unfortunately, this could prevent countless parents of children with AD/HD from seeking a medical evaluation for their children.
CHADD is working strategically with our sister organizations to educate policymakers in key states through letters, one-on-one conversations, briefings and other methods. We are also reaching out to journalists in these states by proposing story ideas, submitting opinion/editorial pieces and providing comments on the record. We are reaching out to educators with information that will inform their efforts, and we are raising public awareness, both in these key states and nationally.
This is just one part of what we do each day to make this country an even better place for people with AD/HD. But we can’t do it without your help. You are an extremely important part of this social movement. We need you to actively participate in your local CHADD chapter. We need you to raise your voice—write a letter to your local newspaper and actively communicate with your local leaders. And we need your generous financial support as we move ahead. Please consider making a tax-deductible donation to CHADD today.
This is truly an historic time for CHADD. Thank you for the very important role you are playing in a social movement that will impact the lives of people affected by AD/HD for generations to come.
Clarke
In addition to preparing for our annual international conference—which typically draws 1,200-1,400 attendees—preparations for this year’s conference include organizing appointments for all attendees with their U.S. Congressional delegations, and organizing and hosting our 20th anniversary gala dinner celebration. Almost every week during the past month, major academic studies on AD/HD have been published. CHADD must analyze and help publicize these studies, and respond to media portrayals. Thousands of inquiries pour into our National Resource Center on AD/HD. We are constantly striving to increase our services to our members and our community affiliate leaders. We just made the Web site login process easier. We are carefully preparing our regular communications and public education materials, such as Attention magazine, CHADDNotes, and NRC News. We are conducting a forum entirely in Spanish for a targeted community. Congress is considering legislation that would impact AD/HD and CHADD is actively involved. We are committed, active, and tired.
This year we mark CHADD’s twentieth anniversary and celebrate the tremendous change over the last two decades for people living with attention-deficit/hyperactivity disorder (AD/HD). Thanks to an incredible social movement, made up of people like you, we have influenced public policy, shaped public perceptions and successfully raised awareness about a disorder that, if left untreated, can have devastating consequences.
Despite the progress we have realized, we nonetheless have an incredible amount of work ahead of us. There is a formidable anti-mental health campaign that would like nothing better than to undo all of our accomplishments and turn the clock back on how our country views and deals with people with AD/HD and other mental health disorders. To beat back many of these efforts and to continue to move ahead with our science-based message, we need your help.
Want an example of some of our challenges? Consider this…
This month the Archives of Pediatrics & Adolescent Medicine features a study (similar to findings from studies produced by the CDC and Mayo Clinic) that reports a prevalence rate of 8.7 percent for children 8 to 15 years old. Disturbingly, the research also found that fewer than half of those with the disorder were diagnosed and receiving treatment. Because the consequences of untreated AD/HD are potentially so severe, this study is an important reminder that we must continue to raise awareness with medical professionals, the public, policymakers and educators.
Yet, to look at the bills being proposed and debated in statehouses across the country, one could easily walk away with a different impression altogether. Many state legislatures are actually considering and voting on bills that would have the effect of preventing teachers from communicating to parents about behavior and learning patterns they observe in the classroom. Teachers, ever fearful of lawsuits, are becoming increasingly guarded about what they report to parents. Unfortunately, this could prevent countless parents of children with AD/HD from seeking a medical evaluation for their children.
CHADD is working strategically with our sister organizations to educate policymakers in key states through letters, one-on-one conversations, briefings and other methods. We are also reaching out to journalists in these states by proposing story ideas, submitting opinion/editorial pieces and providing comments on the record. We are reaching out to educators with information that will inform their efforts, and we are raising public awareness, both in these key states and nationally.
This is just one part of what we do each day to make this country an even better place for people with AD/HD. But we can’t do it without your help. You are an extremely important part of this social movement. We need you to actively participate in your local CHADD chapter. We need you to raise your voice—write a letter to your local newspaper and actively communicate with your local leaders. And we need your generous financial support as we move ahead. Please consider making a tax-deductible donation to CHADD today.
This is truly an historic time for CHADD. Thank you for the very important role you are playing in a social movement that will impact the lives of people affected by AD/HD for generations to come.
Clarke
Wednesday, September 19, 2007
Every Day is AD/HD Awareness Day
As we head into fall, there are a number of accomplishments and projects in the works I want you to know about. Here is a quick sampling of ways we're raising awareness about AD/HD.
Over the soundwaves
The findings of a recent study, released in the Archives of Pediatrics & Adolescent Medicine, showed an AD/HD prevalence of almost 9 percent among children 8 to 15 years old. The findings were consistent with research produced by the Centers for Disease Control and Prevention (CDC) and the Mayo Clinic. Because there was so much interest from the media about this topic, I taped a couple of comments for an audio news release (ANR) that was disseminated to 11,300 radios stations worldwide. Be sure to click here and listen to my comments. I made sure I included the CHADD Web site address.
We reached a whopping 2,253,650 listeners. The soundbite was played by local radio stations across the country and by the following national radio networks:
· ABC Radio Network
· Washington Audio News Distribution (WAND) System
· CNN Radio Network
· American Urban Radio Network (An African-American owned radio station)
I was also interviewed by the Orlando Sun Sentinel and Mental Health Weekly about the study.
On television and in print media
Our communications department worked closely with the producers of CBS Evening News on a story about the study on AD/HD prevalence. We contacted the lead researcher on the study and invited her to take part in a special Ask the Expert chat. Excerpts will appear in December’s Attention magazine.
We worked with USA Today columnist Kim Painter on a story about what some of the latest research findings mean for people affected by AD/HD. The story appeared in that newspaper on September 17, close to AD/HD Awareness Day. CHADD board president Anne Teeter Ellison was quoted, and the article also featured AJ Copeland and his mother Tamara Copeland of Washington, DC. The communications department facilitated the interview. A link to the CHADD Web site will be included in the article. We will be sure to include this article in AD/HD in the News.
VideoCHADD
Please take a look at the latest edition of VideoCHADD, which features our board president Anne Teeter Ellison promoting this year’s 20th Anniversary Hall of Fame Conference. This is a very creative way to promote the conference, and it keeps our Web site fresh for visitors. Links placed near the video take people to more information about the conference, the gala, and the Morning on the Hill. We plan to make updates to the section regularly.
YouTube and Google Videos
CHADD is now on YouTube and Google Video. As people search for key words (such as AD/HD, CHADD, etc.) on these sites, they will pull up videos of science-based information posted by CHADD. The world of online videos through YouTube and Google Videos is a new frontier for us. But it will certainly be an effective way to let the public, particularly younger people, know about CHADD, our conference and perhaps membership benefits.
The Leadership Blog
I am glad you’ve found my blog. We’re trying to reach people in new and innovative ways, and we feel the blog is an effective way to do so. Each week there is a new topic. I have noticed that some people have begun linking from their blog to mine. It’s nice to know these connections are being made, and people feel connected to CHADD.
Attention magazine re-design
The October issue of Attention magazine will feature a new look. We have been extremely impressed with the creativity and professionalism of our new designers, and we think you will agree that the new look is fresh, clean, and visually appealing. The purpose of the new design is to more effectively share information with busy individuals and families. We look forward to receiving your feedback.
Homeschooling Parent magazine
We authored a feature story on AD/HD for Homeschooling Parent magazine, which was released in late August/early September. We also promoted membership and conference in the publication. There is a real need for more science-based information in the homeschooling arena. It is nice that we’re getting this kind of publicity from one of the major publications read by homeschooling parents. Hopefully, we will attract more members from this effort as well.
Addressing undiagnosed AD/HD
CHADD joined forces with Congresswoman Sheila Jackson-Lee (D-Texas) and former CHADD board member and current coordinator Karran Harper Royal to produce a video that pulls at the heartstrings, while highlighting what the research tells us. The video was presented to the National Medical Association section on psychiatry and behavioral science in August. Numerous people have requested copies of the video. It will be shown to an annual meeting of Women in Government next week, and we have plan to disseminate via e-mail to staff members in the U.S. House of Representatives in the next several weeks. The video will also be posted in VideoCHADD in the coming days.
Letters to governors
State legislatures are increasingly considering bills that could impede communication between teachers and parents about students' behavior and learning habits in the classroom. As a result, CHADD has focused a great deal of attention on getting our message out to state legislators. For AD/HD Awareness Day, we sent letters to the governors of all 50 states. In the letter, I talked about the importance of receiving an evaluation and treatment for AD/HD. I also provided the governors with resources, including our public policy director’s contact information and our Web site URL, so they can seek more information from us. Unfortunately, given the timing, we shared the letter with our affiliate leaders a day after writing the governors. We apologize for this timing quirk.
We are working hard to produce science-based information and reach key audiences in an effort to raise awareness about AD/HD. Thank you for allowing me to share just a sampling of the work that is being done at CHADD.
Clarke
Over the soundwaves
The findings of a recent study, released in the Archives of Pediatrics & Adolescent Medicine, showed an AD/HD prevalence of almost 9 percent among children 8 to 15 years old. The findings were consistent with research produced by the Centers for Disease Control and Prevention (CDC) and the Mayo Clinic. Because there was so much interest from the media about this topic, I taped a couple of comments for an audio news release (ANR) that was disseminated to 11,300 radios stations worldwide. Be sure to click here and listen to my comments. I made sure I included the CHADD Web site address.
We reached a whopping 2,253,650 listeners. The soundbite was played by local radio stations across the country and by the following national radio networks:
· ABC Radio Network
· Washington Audio News Distribution (WAND) System
· CNN Radio Network
· American Urban Radio Network (An African-American owned radio station)
I was also interviewed by the Orlando Sun Sentinel and Mental Health Weekly about the study.
On television and in print media
Our communications department worked closely with the producers of CBS Evening News on a story about the study on AD/HD prevalence. We contacted the lead researcher on the study and invited her to take part in a special Ask the Expert chat. Excerpts will appear in December’s Attention magazine.
We worked with USA Today columnist Kim Painter on a story about what some of the latest research findings mean for people affected by AD/HD. The story appeared in that newspaper on September 17, close to AD/HD Awareness Day. CHADD board president Anne Teeter Ellison was quoted, and the article also featured AJ Copeland and his mother Tamara Copeland of Washington, DC. The communications department facilitated the interview. A link to the CHADD Web site will be included in the article. We will be sure to include this article in AD/HD in the News.
VideoCHADD
Please take a look at the latest edition of VideoCHADD, which features our board president Anne Teeter Ellison promoting this year’s 20th Anniversary Hall of Fame Conference. This is a very creative way to promote the conference, and it keeps our Web site fresh for visitors. Links placed near the video take people to more information about the conference, the gala, and the Morning on the Hill. We plan to make updates to the section regularly.
YouTube and Google Videos
CHADD is now on YouTube and Google Video. As people search for key words (such as AD/HD, CHADD, etc.) on these sites, they will pull up videos of science-based information posted by CHADD. The world of online videos through YouTube and Google Videos is a new frontier for us. But it will certainly be an effective way to let the public, particularly younger people, know about CHADD, our conference and perhaps membership benefits.
The Leadership Blog
I am glad you’ve found my blog. We’re trying to reach people in new and innovative ways, and we feel the blog is an effective way to do so. Each week there is a new topic. I have noticed that some people have begun linking from their blog to mine. It’s nice to know these connections are being made, and people feel connected to CHADD.
Attention magazine re-design
The October issue of Attention magazine will feature a new look. We have been extremely impressed with the creativity and professionalism of our new designers, and we think you will agree that the new look is fresh, clean, and visually appealing. The purpose of the new design is to more effectively share information with busy individuals and families. We look forward to receiving your feedback.
Homeschooling Parent magazine
We authored a feature story on AD/HD for Homeschooling Parent magazine, which was released in late August/early September. We also promoted membership and conference in the publication. There is a real need for more science-based information in the homeschooling arena. It is nice that we’re getting this kind of publicity from one of the major publications read by homeschooling parents. Hopefully, we will attract more members from this effort as well.
Addressing undiagnosed AD/HD
CHADD joined forces with Congresswoman Sheila Jackson-Lee (D-Texas) and former CHADD board member and current coordinator Karran Harper Royal to produce a video that pulls at the heartstrings, while highlighting what the research tells us. The video was presented to the National Medical Association section on psychiatry and behavioral science in August. Numerous people have requested copies of the video. It will be shown to an annual meeting of Women in Government next week, and we have plan to disseminate via e-mail to staff members in the U.S. House of Representatives in the next several weeks. The video will also be posted in VideoCHADD in the coming days.
Letters to governors
State legislatures are increasingly considering bills that could impede communication between teachers and parents about students' behavior and learning habits in the classroom. As a result, CHADD has focused a great deal of attention on getting our message out to state legislators. For AD/HD Awareness Day, we sent letters to the governors of all 50 states. In the letter, I talked about the importance of receiving an evaluation and treatment for AD/HD. I also provided the governors with resources, including our public policy director’s contact information and our Web site URL, so they can seek more information from us. Unfortunately, given the timing, we shared the letter with our affiliate leaders a day after writing the governors. We apologize for this timing quirk.
We are working hard to produce science-based information and reach key audiences in an effort to raise awareness about AD/HD. Thank you for allowing me to share just a sampling of the work that is being done at CHADD.
Clarke
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