Monday, December 10, 2007

End-of-the-Year Giving: Ask Us the Questions

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 ( 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 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; 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.


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.


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

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.


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.


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.


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.

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.


Wednesday, August 29, 2007

After High School?

Sunday night we dropped my son Andrew off for his second partial week at a Maryland Department of Rehabilitation Services (DORS) program to help Andrew think about employment options.

The literature on AD/HD emphasizes that transitions from stages in life—to elementary school, to middle school, to high school, to college, and to the work world—are particularly stressful and difficult for many individuals with AD/HD and related disorders. Some speculate that the transition to work from school may be the most difficult of these transitions.

I have previously discussed what a disaster ninth grade was for Andrew and his family. Tenth grade in a totally different school environment was a tremendous success, and our happy and growing young man looks forward to the upcoming eleventh and twelfth grades. While the public school system in our county failed to appropriately meet Andrew’s needs in ninth grade, during the transition from middle to high school the school system did encourage us to begin thinking about the after-high school experience. Because Andrew had an IEP (Individualized Education Plan under special education law), he was automatically referred to the state rehabilitation services program.

No one knows where Andrew’s skills and interests will be in another two years, but we felt it important to have us all begin thinking about options. The state rehab services program categorizes children by levels of challenge, and with severe funding restrictions, many children in need of vocational assessment and support do not get it. Andrew was accepted and enrolled; then we were told that funding cuts meant he would not participate this year; and then the state found a “slot” for him. Andrew returns to school two weeks after the regular public schools in Maryland begin, which probably helped open a “slot” for him. While next year would probably be a more ideal time for Andrew to have such an assessment experience, with governmental funding opportunities one takes them when they are offered.

Andrew stays at a vocational assessment and training center called the Workforce and Technology Center. Week one, he checked in Monday morning and departed Thursday afternoon. Week two, he checked in Sunday night and will depart Thursday afternoon. The two partial weeks are spent exposing Andrew to different job related areas to determine his ability and interest. He has yet to find something that he really enjoys. They don’t have baseball club related job areas (one of his passions in life), but they do offer a variety of computer skill areas. This summer at a school-camp program, Andrew learned PowerPoint skills. He prepared two baseball PowerPoints as well as one on the U.S.S. Ross.

While Andrew is unable to leave the Workforce Center unless there is a field trip (and none are planned during his two-week experience), he has more independence and responsibility at the facility than at school or home. He is also one of the youngest kids at the center these past two weeks. And unlike his current school, no one actively promotes social connections. He has made only one friend there, and that boy left two days after Andrew met him. So, he is lonely. He is not very interested in the skill tests and assessments. We are mildly concerned about the lack of close supervision, something he is accustomed to having. But it is also a good opportunity for Andrew to develop greater independent living skills and to begin thinking about what will follow high school. No decisions are being made, and we have two years before Andrew graduates from high school, so we have plenty of time.

If your child has an IEP, I encourage you to take advantage of job-related assessment and training opportunities that the schools or other public agencies offer.

CHADD realizes that we need to develop staffed program support of individuals facing the transition from high school and from college to the work world, as well as their families. We have submitted applications for funding support from two federal agencies—the Center for Mental Health Services (CMHS) and the Department of Labor . We will be submitting applications to private foundations to provide support to individuals in transition and their families. Our current planning focus is on individuals during the first ten years of transition from high school or college. We will continue to attempt to locate funding to employ staff specialists who can provide direct support to individuals facing this transition. Your support of this effort is also helpful and important.


Wednesday, August 15, 2007

Addressing Mistrust and Disparities Barriers

Last week I attended the annual conference of the National Medical Association (NMA), an African-American medical society in its 112th year of operation. For the fourth consecutive year, CHADD has hosted a dinner presentation on AD/HD for the NMA section on psychiatry and behavioral science. Former CHADD professional advisory board member Karen Taylor-Crawford, M.D., provided the address, speaking on “AD/HD Across the Lifespan, Questions and Quandaries.” Current CHADD PAB member Diane Buckingham, M.D., serves as the NMA section chair. This activity is consistent with CHADD's mission to provide science-based information on AD/HD and related disorders to all populations. Only two percent of the nation's psychiatrists are African Americans. At the NMA conference, 70 medical doctors discussed with CHADD how to bring the most recent science-based information on AD/HD and related disorders to their patients.

Last month, CHADD and the Black Mental Health Alliance of Baltimore conducted a public forum in Prince George's County, Maryland. Approximately 140 African-American families attended to learn about AD/HD. Moving personal stories were shared by audience participants and the all African-American faculty on dealing with the disparity in resources and information and responding to mistrust of professionals and the institutions of society.

The most recent issue of the Journal of the National Medical Association contains an article entitled, "Beyond Misdiagnosis, Misunderstanding, and Mistrust: Relevance of the Historical Perspective in the Medical and Mental Health Treatment of People of Color" (by Derek H. Suite, MD, MS; Robert La Bril, MDiv; Annelle Primm, MD, MPH; and Phyllis Harrison-Ross, MD). This article discusses how the attitudes within the clinical community and the disparities in resources have influenced African-American culture. The article reinforces the conclusion of former U.S. Surgeon General David Satcher's report, "Mental Health: Culture, Race, and Ethnicity": that mistrust is a major barrier to people of color receiving mental health treatment. This was evident at our Prince George's County forum. The article emphasizes that clinicians must be aware of and responsive to such attitudes and experiences of mistrust. As a voluntary health agency, CHADD must also be aware of and responsive to these attitudes. One of the authors of the JNMA article, Dr. Annelle Primm, attended the CHADD-NMA dinner.

Two areas of greatest concern to families attending the Maryland forum were that the use of medication to treat AD/HD might lead to substance abuse, and that placement in special education is not a service to enhance a child's ability to deal with their disability but a mechanism to isolate children, particularly boys, of color. The forum faculty, comprised of African Americans of multiple professional disciplines and family members, shared science-based information on the potential relationship between medication and substance abuse. While acknowledging that some schools and school districts have used special education as a way of segregating children, in the past and at present, many examples were given showing how special education can be extremely helpful for the growth and development of children.

CHADD's effort is to empower individuals with AD/HD and their families by providing practical, science-based information and compassionate support, allowing such persons and families to more effectively manage their lives throughout all the stages of life. We recognize that some populations and communities experience special challenges. I am proud that CHADD is able to engage in outreach and support to these communities. As a result of our Prince George’s County forum, 18 new individuals signed up to become part of the CHADD support group in their community.


Tuesday, July 31, 2007

Together We're Stronger

I recently heard that some CHADD grassroots leaders feel the public's understanding of AD/HD is worse than it has ever been. CHADD members all too frequently encounter people who doubt AD/HD is a real disorder, or think diagnosis and treatment are bad ideas. But research studies show we are holding our own in the world of public opinion, if not yet convincing the naysayers. CHADD has been actively promoting science-based information on AD/HD for many years, particularly through the National Resource Center on AD/HD, our education initiative with the media, and the increased number of CHADD support groups all over the country.

Statistically—in terms of national studies of public attitudes about AD/HD—we have been basically in the same position for the past seven years. Independent studies have consistently documented that roughly 60% of the American population understands that AD/HD is a legitimate and real disorder of the brain that can be treated, that roughly 20% of the American population rejects the existence of AD/HD, and that roughly 20% of the American public simply doesn't know. CHADD obviously has to do a better job of communicating the science of AD/HD and providing direct support to our community leaders. A number of our programs and services provide this information and support, including Parent to Parent: Family Training on AD/HD and our National AD/HD Education Initiative.

Our sister national organization—the National Alliance on Mental Illness (NAMI)—recently launched a blog, written by its executive director and guest contributors, to better communicate to the public and members of the organization. To understand activities and issues facing the larger field of serious mental illness, I encourage you to read Mike Fitzpatrick's blog.

Senator Maria Cantwell (D-WA) has announced her intention to again sponsor a Senate resolution recognizing September 19, 2007 as AD/HD Awareness Day. When the Senate acts, we will inform you on our Web site home page.

In preparing for AD/HD Awareness Day, I went back and listened to some of the world's leading authorities on AD/HD speak at CHADD's previous annual international conferences. I listened to keynote addresses of Robert Brooks, Ph.D., Tom Brown, Ph.D., Edward Hallowell, M.D., and Russell Barkley, Ph.D. These tapes are available from our Online Store.

Some of the important themes I recall:

Listening is central to learning about and coming to understand a person with AD/HD.

Shame and fear are what hold people back. We need to instill hope. Positive energy flows when focused on strengths. Positive energy is what drives treatment to success. The fundamental aspect of good mental health is the need to feel connected. Belonging is the most important aspect to success. It starts in our families. It expands into our churches and communities and schools.

The stories told discuss AD/HD as positive examples and as severe challenges for many people. AD/HD for many people is not a benign disorder and contributes to major life activity impairments. These can include distractibility, impulsiveness, difficulty stopping negative activities, not listening and not following directions, poor follow-through on promises, difficulty doing things in proper sequence, difficulty sustaining attention, and difficulty organizing tasks. This results in major challenges at school, work, home, and community. AD/HD is a "Dimensional Disorder," it is not an all-or-nothing disorder. Impairments come along on a wide continuum—small > medium > substantial > devastating. This reality makes public understanding of AD/HD difficult. Each of us views AD/HD through the lens of our family members.

By focusing on strengths, we teach resilience. Resilience is defined as focusing on strengths to overcome adversity. These are personal and community qualities that professionals, faith leaders, community leaders, family leaders, and many others can promote and reinforce. CHADD community leaders can help focus on strengths and promote resiliency. Each of us—telling our personal story—confronts negative public attitudes.

We all need to work together—collaborate—to deal with the stigma, discrimination, and ignorance in the public and in our own communities. The experts can help us. Stay connected through CHADD and other networks.


Wednesday, July 25, 2007

Studying Treatment, Educating Congress

The MTA Update
Last week, the National Institute of Mental Health (NIMH) announced its latest follow-up information on the nation’s most comprehensive treatment study of persons with AD/HD—the Multimodal Treatment Study on AD/HD, known as the “MTA Study.” This study was first published in 1999, its findings updated in 2004, and now again in 2007. Researchers are following the same group of children over a number of years.

The lessons from the study are that comprehensive treatment is the most effective treatment and that comprehensive treatment is most likely to have a long-term impact if it is maintained with intensity over time. Comprehensive treatment is treatment combining family education, behavioral modification, medication therapy, and special educational modifications for children. Intensity means ongoing and regular activity in each of these areas, carefully monitored by the family and professionals. When intensity of treatment declined, treatment success declined. For a subset of children, there were concerns about growth, future delinquency, and future substance use. These concerns reinforce the need to carefully monitor treatment, which should be intensive.

For further information on the study, go to our Web sites— for the complete statement from CHADD, and for the NIMH statement. The study is published in the August issue of the Journal of the American Academy of Child and Adolescent Psychiatry.

Morning on the Hill
On November 8, all CHADD annual conference attendees will visit with their U.S. Congressional delegations. CHADD is making the appointments, conducting the training, and providing the transportation and support.

Last week, our Director of Public Policy, Paul Seifert, wrote all CHADD members with e-mail addresses, explaining our plans to visit the U.S. Congress. We encourage anyone interested in AD/HD to participate in this public education event. Here is what Paul wrote:
Now, we know the thought of meeting with your U.S. Representatives and Senators can be, well, a little daunting…so we’re making it as easy as…taking a walk! And of course you have questions—we have answers!

Q) I’ve never met with my elected officials and I don’t how to make an appointment.
A) That’s okay because CHADD will handle all that for you.

Q) I’m worried about how to get to the Capitol and back.
A) No problem. We’ll provide wheelchair-accessible, climate-controlled coach buses to and from the Capitol and get you back in time for lunch!

Q) What if get lost and maybe miss the rest of conference?
A) We have you covered! Each and every step of your visit will be guided along the way by experienced and trained CHADD Hill Visit “Captains.”

Q) I won’t be all alone, will I?
A) Absolutely not! Hundreds of CHADD conference attendees will be there with you—easily recognizable, and you’ll be meeting with your Representatives and Senators with other CHADD members from your home state!

Q) What if I get tired or stressed while I’m there, where can I go?
A) We’ll have two staffed rooms, one on the House side one on the Senate side, for you to relax in, grab a soda or juice, rest your feet, and chat with other CHADD members. Just don’t get too comfortable because there’s a whole evening of activities we wouldn’t want you to miss.

Q) But I’m not an expert on the issues; I don’t know what to say!
A) No worries. We’ll provide handouts on a few special issues, and facilitators will be assigned to each and every meeting to guide the discussion. All you need to do is tell your story about how AD/HD has affected you and/or your loved ones; and you already know about that. Speak from your personal experience.

Q) What if they ask a question I can’t answer?
A) Just tell them we’ll get back to them. Each meeting facilitator will have a way to get those questions to us.

Hmmm…okay, well, that sounds easy enough.

Q) Now, how do I get signed up for the Morning on the Hill?
A) Easy… just register for the Conference and we’ll handle it from there.

Q) Oh, one last thing, what should I wear?
A) Whatever you want as long as it’s comfortable.

And for more on CHADD’s Conference go to our Web site.
So, come to Washington and speak from your own personal experience and let Congress know we’re paying attention!

I hope to see you in Washington in November.


Thursday, July 19, 2007

Improving Treatment and Educating Key Audiences

New Treatment Guidelines Announced
The latest issue of a professional journal contains an article with new assessment and treatment guidelines for childhood AD/HD. Information on these guidelines is available on the Web sites for CHADD (see “In The News”) and our National Resource Center on AD/HD (see “Latest News”). These are two separate announcements on the same topic.

Individuals with AD/HD and their families look to their doctors and other health care professionals to accurately diagnose and suggest effective plans of treatment. CHADD, a national consumer and family membership organization with 14,000 members, applauds the American Academy of Child and Adolescent Psychiatry (AACAP) for publishing its revised Practice Parameter for AD/HD.

CHADD completely agrees with the conclusion in the Journal of the American Academy of Child and Adolescent Psychiatry (July 2007 issue, page 916): “The key to effective long-term management of the patient with AD/HD is continuity of care with a clinician experienced in the treatment of AD/HD.” CHADD will continue to work to ensure that all families and professionals are familiar with and practice the latest in evidence-based medicine.

In 2002, the National Initiative for Children’s Healthcare Quality (NICHQ) launched its community collaborative demonstration to enhance pediatric practices for diagnosing and treating AD/HD in 30 communities. NICHQ included a variety of partners, including CHADD and the American Academy of Pediatrics (AAP). NICHQ based its community collaborative using three theories of change—will (leaders who desire to enhance clinical practice), ideas (AAP guidelines provided evidence-based new ideas), and execution (change in health care delivery requires additional infrastructure and incentives).

In many of the community collaborative sites, primary care physicians increased their use of the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV), increased use of teacher-provided information, increased use of written plans of care, increased structured diagnostic assessments in the patient chart, and improved levels of functioning by patients. NICHQ’s efforts paralleled the AAP eQIPP initiative (education for Quality Improvement in Pediatric Practices). Increased collaboration between pediatric practices and schools increased in a few communities.

Among the reasons that some community collaborative projects failed to meet initial expectations were lack of local leadership and commitment by pediatricians, families, teachers, and schools; inertia or the unwillingness to actually change clinical practice, including enhanced roles for office-based nurses; withdrawal of technical supports such as academic medical center backup to private practices; failure of health care payers to financially reward improved clinical practices; and the reality of difficulty in truly engaging with others to build collaborative teams.

We need more community collaborative projects to truly enhance the use of science-based guidelines. CHADD advocates for better family access to professionals practicing the latest evidence-based guidelines.

Educating Federal Legislators
On November 8, all CHADD annual conference attendees will visit with their U.S. Congressional delegations as an integral part of the conference. This is CHADD’s first effort to have such a number of people meet with legislators. “Morning on the Hill” is our November 8 conference event; there are no other conference events that morning. Everyone will be on “The Hill.” We are making the appointments, conducting the training, and providing the transportation and support.

In a little over a week, 34 chapter and national leaders have already volunteered to serve as “captains,” moderators and facilitators for the appointments. Captains will be supported by CHADD staff, sister organizations that specialize in such events, and our national volunteer leaders. To have over a thousand people on the Hill, we will need 100-200 captains.

We are organizing these appointments with members of Congress because:
(1) Our strategic objective is to further our building of a social movement to support persons with AD/HD and related disorders and enhance public education about AD/HD.
(2) Our tactical objective is to demonstrate to the United States Congress that we are an important and numerous constituency focused on a legitimate and frequently serious disorder.

Please register for the conference now, and in early September we will begin making appointments. Join other conference attendees to inform members of Congress what living with AD/HD is all about. Speak from your personal experience!


Wednesday, July 11, 2007

Share Your Experience with the United States Congress

On November 8, 2007, as part of CHADD's 19th Annual Conference, we will be taking to the halls of Congress for our CHADD "Morning on the Hill" to make sure our elected officials know that we're paying attention. Hundreds of CHADD conference attendees will be visiting their members of Congress to tell their personal stories about AD/HD. Our goal is that all conference attendees go to the Hill. We typically have between 1,200 and 1,500 conference attendees. But we need your help to make this day the huge success we know it can be. This Morning on the Hill is a CHADD strategic priority, and is needed to convince Congress that AD/HD is a serious disorder.

The focus of the appointments is to discuss your lived personal experience with AD/HD and related disorders. We will have handouts on a half-dozen public policy issues, but the real purpose is to inform Congress about AD/HD. You can directly explain to members of the U.S. Congress what living with AD/HD is like. But you won’t be alone—you will be part of a delegation of people from your own state. You will experience legislative democracy firsthand, make a memory for a lifetime, and have a lot of fun!

CHADD national and chapter volunteer leaders are agreeing to become state legislative delegation "captains"—facilitators and mentors. We are providing training to all captains. Every CHADD delegation will be led by one of these mentors. Just this week, we asked our leaders to become captains, and already a dozen have volunteered. When we have many more captains on board, we will share this list.

We need more than a thousand people attending the Morning on the Hill to leave a lasting impression. We are making and confirming the appointments, providing transportation from the hotel to the Hill, and providing breakfast. Members of Congress and CHADD staff members will orient you before going to the Hill. We want to reassure those of you who have never visited your member of Congress that it is important, easy, and fun.

If you are planning to attend the conference on Friday and Saturday only, please reconsider. A prominent candidate for President will likely be our opening speaker at 7:00 pm on Wednesday, November 7. The standard conference fee includes the Wednesday evening plenary session. All the Thursday morning Hill activities are free of charge.

Thank you for your efforts to build CHADD's social movement to assist people with AD/HD and related disorders.

Let us know your thoughts about this activity—questions, concerns, excitement. And join us on the Hill!


Thursday, July 5, 2007

Summer: School and Camp Options

Last weekend my wife and I dropped off our 16-year-old son, Andrew, at summer school camp. He'll be there for 6 weeks.

In June, Andrew and I went to Chicago and Milwaukee, where we saw 5 baseball games in 6 days. We visited with Scott Eyre, a relief pitcher with the Chicago Cubs who has publicly discussed dealing with his AD/HD. (See the December 2003 issue of Attention magazine.) Andrew has matured a lot this past year. He and I are good traveling companions, both focused on the various dynamics within the game of baseball. We are blessed to have a common interest; it allows us to better bond and build memories for a lifetime.

Andrew first attended camp just before his 13th birthday. We researched and located a camp specializing in serving a special-needs population, with a long history of operations without problems and a high staff-to-camper ratio. We tried a 10-day mini-camp orientation to see if he liked it, and Andrew admitted that he had a good time. A shy, quiet guy with a history of difficulty making friends, Andrew had previously had only a few friends. He was smiling broadly when we picked him up that first year, because of his new friendships. The next few summers he attended the camp for six weeks.

Our purpose in sending Andrew to camp was to increase his social skills and friendships, and to allow him to engage in activities difficult to offer at home—such as canoeing, hiking, banana boating, camp play, and other social activities with kids his own age. Andrew even attended a minor-league baseball game while at camp.

Now we are sending Andrew to a summer school camp at his new school. Andrew will be 17 in October and begins 11th grade this coming September. Following academic and social failures in 9th grade, and his resulting depression, unhappiness, and defiance at home, we decided to place Andrew in a boarding school for kids with special learning needs. The school had a 66-year history and serves no more than 80 kids, half boys and half girls. This was an excellent decision for Andrew’s 10th-grade year. He passed all his courses, made friends, increased his social skills, participated in team sports (as must all students at the school), and improved his independent living skills and personal hygiene—although these remain challenges to work on. He is a happy guy, with challenges and frustrations typically faced by all adolescents.

We based our decision to send Andrew to a summer school camp on several factors. He faces required competency tests for high school graduation and continued learning difficulties. At home, he does not exercise regularly and misses his friends. We wanted to further his social and independent living skills development. Summer school camp means that Andrew goes to school with his regular school teachers in the morning and enjoys camp-like activities in the afternoons. And he gets to attend a minor-league baseball game. Andrew was looking forward to going back to this “comfort zone.”

A July Washington Post article, "Kids Learn To Get Moving: Summer Camp Fits Fitness Along with the Fun," states that the typical kid gains more weight in the summer than during the school year, according to a study in the April American Journal of Public Health. Though my wife and I exercise regularly, and Andrew and I got some exercise during our baseball trip, his tendency when at home is to play electronic games, watch baseball, and use the Internet to keep up with baseball games and statistics. At home, his best friend enjoys playing electronic games and does not enjoy sports and physical games. A regular exercise program, including team sports, is an added motivation for summer school camp. Andrew loves team sports, particularly basketball and baseball, but he is developmentally awkward and can't play with the regular athletes in his home community. At his school, however, everyone has challenges and everyone plays. Andrew really enjoys this.

Every family has to work through decisions about school and camp placement. They aren't for every kid and every family. Economics influence a family's chance to take advantage of these opportunities. As CHADD CEO, I am very proud that for our second consecutive year, CHADD has provided summer camp scholarships, so that kids with special needs and limited economics can have the camp experience. We are blessed that our family has choices, and these choices help Andrew learn, grow, and mature.

Enjoy your summer.


Wednesday, June 27, 2007

Communicating--with Doctors and Other Treatment Professionals

Before turning to this week’s topic, I want to call your attention to VideoCHADD, a brand-new feature on our Web site. This week VideoCHADD presents an interview with Karran Harper Royal, CHADD member and the mother of a teenaged son with AD/HD. We will add more film clips as we develop this feature in the coming months.

Communicating with Clinicians
The May issue of the Journal of Attention Disorders includes a new feature titled “Clinical Commentary,” written by professionals for professionals. Professionals describe a "clinical" case and other professionals react to the clinical description. The commentary suggests four recommendations for clinicians dealing with more complicated "cases" of AD/HD and possible co-occurring disorders. CHADD and several colleague family organizations have been attempting for several years to convince professionals to humanize the way they view people with possible disorders. We prefer to be called people, rather than "cases."

Despite some sensitivity to the journal's terminology, the four recommendations are right on the money. Family members need to be aware of these recommendations, and maybe even remind some professionals of these recommendations, if not practiced. The four are:

1. Be patient and do not rush to judgment on assigning diagnoses.
2. Instill hope.
3. Clarify goals and prioritize interventions.
4. Monitor treatment closely and carefully and make adjustments as necessary.

The first recommendation advocates professional "understanding" of the person and getting the diagnosis correct. The second emphasizes the role of the professional in promoting hope to the "patient" and their family, so they understand and can successfully deal with the disorder. The third is the need to prioritize treatment interventions. The fourth documents the need to constantly monitor for changes—both negative and positive. As the father of a son with the inattentive form of AD/HD and co-occurring challenges, I found these recommendations very helpful. (See Kevin Murphy, "Reactions to Our Experts' Commentary on the Case of Sally," Journal of Attention Disorders, May 2007, page 42.)

Consumers Weighing the Evidence
CHADD is a member of the National Working Group on Evidence-Based Health Care, which was organized by Mental Health America.

On April 19, the working group conducted a forum on "Nothing About Us Without Us: Patient/Consumer Participation in Evidence-Based Health Care." The forum’s advocacy agenda highlighted the need to include patients and consumers in all parts of the development, review, and dissemination of evidence-based knowledge of health treatments, technologies, and services. It is the patient-consumer and his or her family who must implement the treatments recommended by clinicians. If the clinician is aloof and merely preaches, the odds of implementation are greatly reduced. If the researcher does not involve the consumer in the research design, the design may not work for persons with disorders in the real world. If the professionals do not involve the consumer in disseminating the information, it may be written in a form that the consumer can not understand. There must be collaboration, respect, and communication for treatments to be successful. It is the responsibility of researchers and clinicians to fully prepare patients-consumers and their families to participate in the process. This takes time and patience on the part of all participants. Part of this communication process means that patients-consumers receive complete information about benefits, risks, and possible unknown consequences of the possible interventions.

Role of Conferences and Support Groups
Skills in and experiences with communication between professionals and consumers and their families are learned and increased at the CHADD annual conference and the monthly support groups organized by many CHADD chapters.

We all want competent professionals who understand the latest knowledge about the science. But an important element in selecting and staying with a professional is comfortable and respectful communication. Many families will schedule an appointment to literally interview the professional about his or her knowledge and communication style. Frequently, health insurance will not reimburse for this initial interview process unless the consumer and family ultimately choose the professional. But such an interview can be a very valuable investment in the future. CHADD support groups offer an opportunity to discuss these professionals in an informal person-to-person dialogue.

I wish you success in locating and maintaining such professional relationships.


Wednesday, June 20, 2007

Educating the Media

Wouldn’t it be wonderful if the media was a source of information based on fact and evidence? If your child had attention-deficit/hyperactivity disorder (AD/HD) or any other disorder, you could turn to your preferred media outlet—newspaper, Web site, television or radio—and find stories grounded in reliable, accurate, science-based information. When reporters do their research responsibly, instead of sensationalizing, trivializing, opining or theorizing, the public good is served and awareness increases. When they don’t, we at CHADD spend another week trying to increase the media’s awareness of the importance of doing its job more responsibly.

Here’s a roundup of some of the reports involving AD/HD over the last couple of weeks…

Dietary interventions and AD/HD
A number of media outlets recently published stories asserting that AD/HD can be treated through dietary interventions. These stories relied exclusively on controversial books and information and did not report on what the science shows to be an effective treatment for the disorder.

There are two types of dietary interventions: one adds particular foods, vitamins or other "nutritional supplements" to one's regular diet, and the other removes or eliminates certain foods or nutrients from one's diet." The most publicized of these diet elimination approaches is the Feingold Diet. This diet is based on the theory that many children are sensitive to dietary salicylates and artificially added colors, flavors, and preservatives, and that eliminating the offending substances from the diet could improve learning and behavioral problems, including AD/HD.

Despite a few positive studies, most controlled studies do not support this hypothesis. At least eight controlled studies since 1982, the latest being 1997, have found validity to elimination diets in only a small subset of children "with sensitivity to foods." While the proportion of children with AD/HD who have food sensitivities has not been empirically established, experts believe that the percentage is small.

There is stronger published research about the advantages of one dietary supplement—Omega 3 fatty acid—for a variety of good health promotion, including conditions related to AD/HD.

Parents who are concerned about diet sensitivity should have their children examined by a medical professional for food allergies. Research has also shown that the simple elimination of sugar or candy does not affect AD/HD symptoms, despite a few encouraging reports. For more information on these treatment options, click here.

We at CHADD offer extensive science-based information about AD/HD on our Web site and on the Web site of the National Resource Center on AD/HD (NRC). CHADD also produces a rich package of benefits for its members.

Paris Hilton & AD/HD
Who’d have thought that as CEO of CHADD, I’d get such an education in pop culture. But that’s exactly what happened recently when word began to spread through the media that reality star and hotel heiress Paris Hilton has AD/HD. I must admit that I typically don’t keep up with Ms. Hilton; however, it is important to keep up with issues when AD/HD is mentioned. These reports have been unsubstantiated, but we encourage anyone who thinks (s)he has the disorder to seek a full evaluation from a medical professional. As I mentioned in a recently released statement, we want to emphasize that AD/HD should never be used as an excuse for bad behavior. We wish Ms. Hilton the best of luck as she moves on with her life.

And on to other news that is certainly fit to print…

I hope you have registered for CHADD’s annual conference, scheduled for Nov. 7-10, in Crystal City, Va. I have previously highlighted the attendance of James Carville and Ty Pennington’s mom at our 20th anniversary gala dinner celebration. Radio and television sports announcer Johnny Holliday has agreed to serve as our master of ceremonies. Johnny is the father of a young woman with AD/HD.

We will continue to arrange interesting speakers for the conference. We hope that you will peruse the conference section of our Web site to learn more about the offerings at this year’s event and to register to attend. We welcome everyone, including members of the media.

Who knows—while it will be held in Washington, you may even see Paris there! Stay tuned…


Wednesday, June 6, 2007

A Very Special Conference

Hopefully you’ve noticed that registration is now open for CHADD's 19th Annual International Conference on AD/HD, which will be held November 7-10, in Crystal City, Va., a suburb of the nation's capital.

Our conference always brings people with different backgrounds together under one roof to share ideas, science-based information, promising practices, and inspirational stories. It’s a great opportunity to network, learn and even earn continuing education credits.

This year is CHADD’s 20th anniversary, so we plan to celebrate at Conference by hosting a special gala dinner on Nov. 8. You probably know by now (with the help of a big announcement on our Web site) that James Carville, one of the best-known political strategists in Washington and an individual who lives with AD/HD, will be speaking at the gala dinner. It is certain to be a lively speech. Mr. Carville will speak about dealing with his own AD/HD.

Also, special to this year’s conference, we plan to take full advantage of the fact that the conference will be held in the nation’s capital. We will be busing our conference participants up to Capitol Hill for a highly structured day of meetings with their congressional delegations.

This will be an excellent way to bring home to members of Congress how AD/HD affects the lives of their constituents. And just imagine what it will look like to have over 1,000 people who are affected in some way by AD/HD walking around Capitol Hill. What a statement that will make! You won’t be alone. Staff and volunteer leaders will serve as resource guides with state delegations during the visits.

Several members of the U.S. Congress, including those running for president, have verbally stated their desire to speak to conference attendees. We are not yet able to publicly announce who they are.

At the gala dinner, Ty Pennington’s mother will discuss dealing with Ty’s AD/HD, we will honor several members of Congress who are advocates for those with mental health and disability challenges, and we will be entertained by the Capitol Steps, a popular musical political satire group.

Consistent with a theme from our sister association, the National Alliance on Mental Illness (NAMI), of “Parents and Teachers as Allies,” this year’s conference will dedicate a separate track to assisting teachers in successfully dealing with AD/HD.

The social movement continues!

Oops, we hope she won’t do it again…
Yes, my headline borrows from Britney Spears’ popular song. While I am several generations away from the young people who listen to Ms. Spears’ music, our communications staff briefs me on these cultural developments.

My son Andrew has AD/HD-Inattentive Type, as well as other co-occurring conditions. So, like other people affected by AD/HD, I took issue with a flip statement Ms. Spears made recently that referred to people with AD/HD as being “bad.” AD/HD is neither “bad” nor willful; it is a neurobiological disorder that needs a “multi-modal” approach to help.

Of course, Ms. Spears doesn’t have the professional training of someone like Joyce Brothers, Ph.D., who recently referred to adults with AD/HD as being hypochondriacs. As you know from previous blog entries, I fired off a letter to Dr. Brothers and then CHADD’s communications staff took the lead in organizing a group response from our sister organizations.

Add to these statements the outrageous and unscientific information that is published everyday in both small and large news markets, and you can clearly see that we have our work cut out for us. Here are some things you can do when you see misinformation or read a cutting comment about AD/HD.

Five tips for combating misinformation and negative comments about AD/HD
1) Write a letter to the editor. If you see something you disagree with, let people in your community know what you think and, most importantly, what the science says. You can find information on the CHADD Web site or at the CDC-funded National Resource Center on AD/HD.
2) Find a reporter’s contact information, and send a letter directly to him or her. Forward an article from Attention magazine or some information from the aforementioned sites. Tell the reporter that he or she can contact CHADD’s communications and media relations department for some creative and science-based story ideas.
3) Enlist the help of a CHADD Chapter Coordinator if the issue is local and you want to brainstorm on how to respond. Our chapter coordinators will contact the CHADD communications department if the need arises.
4) Become a part of our social movement—join CHADD today. Besides getting the magazine and being a part of something bigger than yourself, membership also means you’re joining forces with other to support an organization that is effective in the state and local public policy arenas, with local and national media, and in delivering evidence-based information to the public.
5) Visit the National Alliance on Mental Illness’s (NAMI) StigmaBusters site. StigmaBusters is a network of dedicated advocates across the country and around the world who seek to fight inaccurate and hurtful representations of mental illness. You can learn more at

As we celebrate CHADD’s birthday, we recognize the difference the organization has made over the last 20 years. But with your help we plan to make an even bigger splash in the years ahead.


Tuesday, May 22, 2007

Burdens and Attitudes

The May 2007 issue of the journal Pediatrics contains an article on “Psychological Functioning and Coping Among Mothers of Children with Autism.” This article resulted in some interesting discussion within CHADD’s lay and professional leadership and in a later blog I will summarize some of these discussions. The conclusion of the study was that mothers of children with autism were highly stressed and more likely to report poor or fair mental health than mothers in the general population. While this study focused on moms with children with autism, the same daily stress applies to any mother or father of children with special needs.

As the father of a 16-year-old son with AD/HD and several co-occurring disorders, dealing with disappointment and stress has been with me for 16 years. There are many moments of happiness and satisfaction but it is no bed of roses, as they say.

So along comes Dr. Joyce Brothers in an April 17 column that we just saw a little over a week ago. She calls adults with AD/HD “hypochondriacs.” Her solution to dealing with adult AD/HD: just “muddle through.” She said there is no need to seek medical advice—just muddle through life and do the best you can.

CHADD has written Dr. Brothers expressing dismay that without relying on published science she dismisses the existence of AD/HD and says that it is a mild inconvenience that one should get over. The result of her article is perpetuation of the stigma associated with AD/HD and will likely result in individuals with AD/HD and their families not seeking medical and associated professional assistance. I really wish that one could rid oneself of AD/HD and related disorders by willing it away. But the reality is that AD/HD for many people is a lifespan disorder that manifests itself in many ways.

Not only is muddling through not the correct answer, but untreated AD/HD can result in school failure, relationship problems including social isolation that my son has experienced, employment problems, and driving accidents. What kind of parents would we be if we merely told our children and family members with special needs to “get over it”? CHADD is here to respond to such misplaced attitudes, but how I wish we could spend more of our energy and resources on helping people deal with these stresses rather than the need to counter ignorance.

A sister organization initially issued a press release on Dr. Brothers. A week later CHADD wrote to Dr. Brothers. A week after CHADD wrote to Dr. Brothers, CHADD joined our sister organizations—American Academy of Child & Adolescent Psychiatry (AACAP), the American Psychiatric Association (APA), Mental Health America (MHA), and National Alliance on Mental Illness (NAMI)—in writing an open letter to Dr. Brothers. We will keep you informed about any progress or developments.

Write to Dr. Brothers via King Features, 888 Seventh Avenue, New York, NY 10019.

May we reach a time when we don’t have to deal with these public attitudes so we can increase our efforts to improve the lives of persons with AD/HD and related disorders.


Tuesday, May 15, 2007

The Evidence Base for Peer Education Relying on the "Lived Experience"

The Parent to Parent Experience
Designed to help parents of children with attention-deficit/hyperactivity disorder, CHADD’s Parent to Parent: Family Training on AD/HD enrolled its 1,000th participant this month. As of today, there are 1,167 parents participating in the program. The P2P program exemplifies one of CHADD’s core principles—peers helping peers—in this case, parents helping other parents.

A second core principle of CHADD, since our founding 20 years ago, is reliance on peer-reviewed evidence-based science. Recent published research on a sister program that P2P is based on documents the evidence.

Parent to Parent is a unique educational program for parents and individuals who are dealing with AD/HD; many participants, or their family members, have recently received a diagnosis of AD/HD and are searching for reliable, evidence-based information on the disorder. Courses are offered in 38 states and online by certified Parent to Parent teachers who have received training through CHADD.

The course, a series of two-hour classes offered during the span of seven weeks, includes a variety of topics on which parents are searching for information. The course includes an overview of AD/HD and available assessment and treatment options. Also included is information on managing the impact of AD/HD on a family, behavioral interventions that work and effective parenting strategies. School issues, such as special education and IDEA, classroom accommodations and Section 504, and how to work with school administrators are incorporated. Also discussed are issues surrounding growing older, the disorder’s impact in the teenage years and during adulthood.

P2P is an exemplary model of the role that voluntary health agencies perform in American society. Last year, the National Alliance on Mental Illness announced, after more seven years, the training of their 100,000th family in their Family-to-Family Education Program (FtF). This peer program is focused on families dealing with the recent onset of severe mental illness. Parent to Parent was the first program funded by contributions to CHADD’s President’s Council—donors who give substantial personal financial contributions to support specific CHADD educational projects that might not otherwise be possible. The P2P concept was based on NAMI’s FtF initiative and voluntarily initiated as an AD/HD program by Linda Smith of CHADD-Utah. Meanwhile, Beth Kaplanek of New York and Mary Durheim of Texas worked on similar projects. They soon collaborated and, during a period of two years, created Parent to Parent.

Linda is a former member of the CHADD national board of directors, and Beth and Mary are former CHADD national presidents. Three innovative volunteers, collaborating under the umbrella of a voluntary health organization, with financial support from other volunteers, typify the role of voluntarism in America. And these three individuals serve as a model of how to answer the question,“What’s after my national board service?”

The Evidence Base
In the winter 2007 issue of the NAMI Advocate, researchers at the University of Maryland, with financial support from the U.S. National Institute of Mental Health (NIMH), documented three research-based evaluations of the FtF program. Their findings included:

1. People completing FtF indicated less “subjective burden” after completing the program. This is a NIMH-university funded study, so the language and phrasing will be challenging. “Subjective burden” is “how much emotional stress family members rate themselves as feeling, as a result of objective stresses and other worries.”
2. People completing FtF indicated more “empowerment.” Empowerment is a term that has been used in the mental health field for the past 20 years and has been increasingly recognized by researchers and policy makers. Empowerment is one’s sense of having information, rights and skills needed to understand a given situation and to meet one’s goals within this situation. The FtF researchers asked families about their sense of empowerment in their family, in their community, and with the mental health system. People completing FtF were much more able to adapt to the situations facing them.
3. People completing FtF experienced more “proximal” positive changes (such as better family communications and less anger).
4. People completing FtF experienced more “distal” benefits (such as less stress and less conflict in the family).
5. People early in their FtF program participation felt immediately welcomed, heard that others face the same problems they do, and received valuable information from their very first meeting. These benefits led them to return to ensuing meetings. The researchers term these benefits “early sustenance.”

The Future of Parent to Parent
There are now 181 Parent to Parent teachers working with local chapters to offer the course and more than 1,045 graduates of the course. The course is also offered in Spanish across the country. In addition to information, parents and individuals learn tactics and tips for managing the disorder in their children’s and their own lives, have the opportunity to meet other people dealing with the same situations they deal with, and discuss their concerns in a supportive environment. Parents who have taken the course say they have gained a better understanding of the disorder, improved their parenting styles, and gained confidence in navigating the challenges AD/HD can present.

Over the next few years, CHADD will also be seeking independent third-party academic evaluation of the program. This is actually what is known as a “paradigm” change. Many academics and treating professionals still reject the validity of peer-provided education and support. CHADD will support NAMI and others in developing a body of evidence documenting the benefits of peer-provided education and support, using the “lived experience” as the benchmark.

To register for a course, contact Parent to Parent at CHADD; visit our website or call (301) 306-7070, extension 135.

Thursday, May 10, 2007

AD/HD Prevalence and Treatment Variance

Variance in Medication Prescribing Practices
An article on public attitudes about attention-deficit/hyperactivity disorder (AD/HD) appeared in the May 2007 issue of Psychiatric Services. The authors, McLeod and associates, compare the estimated national prevalence of AD/HD with medication use and argue that AD/HD is underdiagnosed in the United States. They also observe that critics claim the disorder is overdiagnosed because of the tremendous increase in the use of AD/HD medications over the past decade. Missing from this analysis, however, is the more significant and difficult issue of the tremendous variance in medication utilization across the nation. Where a person lives seems to be important to whether that person receives medication for the treatment of AD/HD.

There are two published national studies documenting the significant variance in medication utilization across the country. The first, the result of 14 months of work by two reporters from a major metropolitan daily newspaper, gets little attention in the published research because of the source of the data and the journalistic credentials of the researchers. On May 6, 2001, the Cleveland Plain Dealer published a major study by reporters Sabrina Easton and Elizabeth Marchak entitled, "Ritalin Prescribed Unevenly in US." This study documented the use of medication to treat AD/HD in every county in the United States, using Drug Enforcement Administration (DEA) data.

Alarmingly, the Cleveland Plain Dealer study found that in some counties in the United States the number of people being prescribed medication for AD/HD was three times the expected prevalence rate, while in other counties not a single individual was receiving medication for the disorder. There are many possible reasons for this variance. CHADD believes that a major reason for the variance is inconsistency in the use of evidence-based diagnosis and treatment guidelines as published by the American Academy of Pediatrics (AAP) and American Academy of Child and Adolescent Psychiatry (AACAP). CHADD works closely with AAP and AACAP to more effectively implement these guidelines.

The second published study of medication use is a recognized professional study published in Pediatrics in February 2003. Despite controlling for age and gender, Cox and associates conclude that variation in stimulant use among children was second only to the variation in cough/cold/allergy prescription use among children. The authors state that the reasons for regional variation in stimulant treatment are not known. They postulate that "differences in state controlled substance abuse laws, anti-Ritalin campaigns, direct-to-consumer advertising, physician practice style, the values, beliefs, and expectations of adult caregivers" are the reasons. They define "physician practice style" as either the "professional uncertainty theory" of physician uncertainty about the nature of AD/HD, and the "enthusiasm hypothesis" whereby some physicians are advocates of stimulant medication use.

Through CHADD’s advocacy with the U.S. Congress, the U.S. Centers for Disease Control and Prevention (CDC) is currently funding two community-based studies to learn more about the prevalence and treatment patterns of AD/HD. (U.S. OMB. Federal Register, April 5, 2007; 72:65, 16789-16791)

When you consider a physician or other medication prescribing professional, ask if he or she practices the American Academy of Pediatrics evidence-based guidelines. Ask if he or she practices the American Academy of Child and Adolescent Psychiatry evidence-based guidelines. Try to probe his or her philosophy and understanding about what the U.S. National Institute of Mental Health (NIMH) states is a neurobiological lifespan disorder. You need to be comfortable with the doctor’s medication training and philosophy, preferably before you go into the appointment. This is possibly a long-term partnership between you and the professional.

International Variance
While CHADD’s concern is with the variance of prescribing practice in the United States, you might be interested to know about worldwide patterns.

A March/April 2007 Health Affairs article by Sheffler and associates documents the significant variance between countries in the use of medication to treat AD/HD. These authors state their premises up front: that AD/HD is “a syndrome with strong neurobiological origins” and that the prevalence of AD/HD is similar across nations. As of 2003, 55 nations officially recognize AD/HD and officially recognize medication as one treatment for AD/HD. The United States counts for 83.1% of AD/HD medication consumption in the world. Sheffler and associates conclude that use of AD/HD medications is positively related to per capita income and to the availability of medical specialists who understand AD/HD. This is true for most health conditions.

Canada, Great Britain, and Australia show medication-use patterns similar to the United States while France, Italy, Ireland, Austria, Japan, Sweden, and Finland use less AD/HD medication than predicted by per capita income. In addition to per capita income and availability of specialists, other factors identified by the authors as influencing these patterns include advertising, the definition of AD/HD and its differing focus on severity of the disorder, public educational policies and practices, and medication spending as a portion of overall health spending. France, for example, has highly restricted and narrow criteria before medication can be prescribed, requiring that only a hospital-based neurologist, psychiatrist, or pediatric specialist in AD/HD may prescribe AD/HD medications.

I hope you find this international information helpful and educational, and not a distraction from the important issue of treatment variance within the United States. CHADD will continue to work to close the variance of treatment within the United States by working with the professional community to implement evidence-based guidelines.