CHADD Leadership Blog

Recovery, Hope, and Self-Esteem

2008-05-06T10:16:00.004-05:00

This weekend I attended the annual scientific advisory board awards luncheon of the Depression and Bipolar Support Alliance, and also discussed with my son’s school mentor the impact of the lack of self-esteem has on his outlook and confidence.

The theme of the DBSA luncheon was to review recovery tools available online, 24-7. DBSA is increasingly using video to provide these tools. On their Web site, “Recovery Steps” is a major link. DBSA equates recovery with wellness.

The President’s New Freedom Report on Mental Health advocates the transformation of the nation’s mental health system to focus on recovery. The report and the DBSA link to the Substance Abuse and Mental Health Services Administration definition of recovery: “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.” For two years I have been thinking off and on about how the mental health concept of recovery, the fundamental principle in reforming the nation’s mental health system, applies to AD/HD and to my 17-year-old son with special needs. The CHADD professional advisory board has not yet focused its concentration on this question, but we will over time.

The SAMHSA National Consensus Statement on Mental Health Recovery identifies ten components of recovery. I will only focus here on one aspect of recovery—hope.

Hope is a focus on a “better future–people can and do overcome the barriers and obstacles that confront them.” Hope is internalized but can be fostered by peers, families, friends, and others. To SAMHSA, “hope is the catalyst of the recovery process.” During the past two weeks my son has been upset with some peers’ criticism of him. He is highly sensitive; criticism takes a life of its own and becomes a focus on the negative, rather than a focus on the positive.

My son’s mentor believes that my son’s sensitivity is heightened by low self-esteem and low self-confidence. Robert Brooks, PhD, has emphasized at CHADD conferences over the years the need for each of us to have and use our "islands of competence." I have always used Brooks’ approach to emphasize with my son his strengths, while not exaggerating. My March 20, 2008 blog—“Self-esteem, Bonding, and Enjoyment”—focused on my son’s strengths. But offsetting strengths are the built-in doubts we all have, and that people with special needs may have even more of.

At the DBSA luncheon, consumers used the following words to describe their success in moving towards recovery—trusted, loved, depended on, understood, healthy, in control, and inspiring hope. My son’s mentor observed that self-esteem and confidence are “earned” through lived experiences. I wish to think that they are “developed” through life experiences. Within each of us is the memory conflict between positive experiences and negative experiences. Enhancing the positive experiences and reducing the frequency of the negative experiences is an objective. You can’t fake this—it is an internalized feeling. But hope and self-confidence can be fostered. It is much easier for me to stay focused on the positives, but life is this balancing act between the positive and the negative. The more negative experiences one has, the more difficult to have hope. (Not discussed here is the literature on resilience.)

CHADD will continue to brainstorm, think about, and examine the published science to conceptualize how the concept of recovery applies to a lifetime learning and living challenge called AD/HD. Using the SAMHSA definition, we know it is a journey of lifelong duration. We know that one has to “live a meaningful life.” Our role as parents, partners, and advocates is to assist our child or partner in achieving his or her own potential. (There are nine other interrelated components to recovery, according to SAMHSA, that will not be addressed here.)

Your thoughts, your experiences, and your approach can help CHADD more effectively think this through. Please share your ideas on how the mental health concept of recovery applies to living with AD/HD. Thanks for your time and sharing.

Clarke

Kids, Stimulants, and EKGs

2008-04-23T12:58:00.008-05:00

by Andrew Adesman, MD

The American Heart Association (AHA) this week released a statement calling for pre-treatment electrocardiograms (EKGs) and routine cardiac monitoring for children and adolescents prescribed stimulant medication for attention-deficit/hyperactivity disorder (AD/HD).

The intent of the AHA’s call for closer cardiac monitoring is to identify the very small number of children and adolescents who may have an undiagnosed heart problem. Overall, I think this makes an already safe process even safer. That said, I think there are some considerations and implications involved with such a recommendation.

First, I am concerned that while this screening test will undoubtedly identify the extremely small number of children who indeed are at some increased risk, it will lead to a delay in treatment for most children, incur an additional cost for some, and create a significant number of “false positives” that will lead to additional consultations.

To the extent that many people do not live close to a pediatric cardiologist, this will create an additional burden of time, anguish, and money. Although the decision should indeed fall to pediatric cardiologists, there may not be clear, evidence-based guidelines guiding them as they counsel families referred for a cardiac clearance for stimulant medication. (This of course assumes that a family can easily locate and get in to see a pediatric cardiologist.)

Since some of these rare cardiac conditions would be important to identify for their own sake, perhaps routine EKG screening should be done on all children. In other words, although the decision to treat with stimulant medication will increase the likelihood of imminent cardiac problems in some children evaluated for AD/HD, these health issues should be identified in all children if feasible. However, this is likely to be a resource issue.

Perhaps the most important point is that the EKG screening may, to some extent, give a false sense of security to families and clinicians. That is to say, in some rare cases the screenings could miss some cardiac problems that would be important to identify if stimulants are to be prescribed.

The AHA’s recommendations likely reflect a consensus by its leadership on what is considered reasonable and feasible. I am certain the points I have enumerated in this blog entry were considered in developing the recommendation.

So what should be done as we move forward with this recommendation? First, we must make sure we’re eliminating as many hurdles as possible for parents. Health insurance companies should play their role by accepting EKGs as “medically necessary” so that there are no payment denials for asymptomatic children. Pediatric cardiologists will need clear evidence-based guidelines that will help them as they advise families. And primary healthcare providers, who initiate the evaluation for AD/HD, will have to help shepherd parents through the various evaluations to avoid a significant delay in treatment for AD/HD. I take solace in knowing that CHADD and its sister organizations will do everything imaginable to help parents with these new recommendations.

Andrew Adesman, MD, is chief of developmental & behavioral pediatrics at Schneider Children’s Hospital, part of the North Shore-Long Island Jewish Health System in New Hyde Park, New York. A former member of CHADD’s board of directors and a current member of its professional advisory board, Dr. Adesman is recognized nationally for his clinical expertise in child development. He has authored many articles on AD/HD and co-authored the book Parenting Your Adopted Child.

AD/HD and Research Priorities

2008-04-16T08:25:00.002-05:00

Thank you for the opportunity to address the members of CHADD and the readers of CHADD’s Leadership Blog. As director of the National Institute of Mental Health (NIMH), I am excited by CHADD’s enthusiasm and support for progress in clinical and basic research that will lead to improved outcomes of individuals with mental disorders, including attention deficit/hyperactivity disorder. AD/HD is a neurobiological mental disorder that affects approximately five percent of school-aged children (G. Polanczyk and L. A. Rohde, 2007), and is recognized by the NIMH, the Centers for Disease Control, and the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Recent studies have demonstrated alterations in neurotransmitter systems and cortical development that may be fundamental to AD/HD. Even though we do not yet understand the exact causes of AD/HD, we know that approximately 75 percent of the likelihood of developing AD/HD is due to genetic influences (S. V. Faraone et al., 2005), and the remaining risk is composed of environmental factors.

The National Institutes of Health (NIH) has a vision for clinical care built around four Ps: medical care that is predictive, pre-emptive, personalized, and participatory. NIMH has been pursuing this vision for mental disorders. Toward this aim, in 2007 we funded 219 awards related to AD/HD research, totaling over $80 million.* These investigations range from the identification of genetic and behavioral features to predict who is at risk, to early intervention studies to pre-empt the disability of AD/HD, to treatment studies aimed at identifying personalized, individual patterns of response to behavioral or medical interventions. As we continue to acquire information that will lead to improved therapies, we encourage the recognition of, diagnosis of, and treatment of AD/HD by clinicians. NIMH is also committed to participatory research, which means that we work closely with groups like CHADD to ensure that our science is relevant to the needs of patients and their families. For us, research is a partnership between our scientists who want to make a difference and our families who volunteer to ensure that research will make a difference.

Biomedical research rarely follows a linear path of progress. There are many years of incremental findings before major jumps forward. The renowned physicist Freeman Dyson famously noted more than ten years ago that “new directions in science are launched by new tools more often than new concepts"(1997). New tools for genetics and imaging are changing the landscape of biomedical research from mental disorders to cancer, leading to advancements in the understanding of many common disorders. The past year has been a time of extraordinary progress, arguably the beginning of a jump forward, in research on AD/HD. The first whole genome association study was completed, with data available in dbGAP so that researchers anywhere can join the search for genes associated with AD/HD (GAIN: International Multi-Center ADHD Genetics Project Database). Imaging studies demonstrated that children with AD/HD have delayed cortical maturation (P. Shaw et al., 2007). After years of debate about the validity of AD/HD as a behavioral or cognitive disorder, this finding reminds us that AD/HD is a developmental brain disorder, specifically a disorder of cortical development. Finally, studies in the past year support the value of treating preschool children with AD/HD with behavioral interventions (L. Kern et al., 2007), providing additional options to earlier data about the effectiveness of psychostimulant medication in this age group (B. Vitiello et al., 2007).

If we now view AD/HD as a disorder of cortical maturation, what does this mean about diagnosis and treatment? Should children receive repeated MRI scans to make a diagnosis or to follow treatment response? Can we find genes that regulate cortical maturation or develop novel treatments that accelerate it? Do early individual differences in cortical maturation have any predictive significance? These are all questions that will need to be addressed in future research. But clearly, in this case, a new tool has yielded a new concept. AD/HD is not just a behavioral disorder; it is a developmental brain disorder. This conceptual shift suggests not only an entirely new generation of research but new prospects for prediction, pre-emption, personalization, and, yes, participation of families as we generate research to pave the way for improved treatments, prevention, and ultimately cures for AD/HD.

Thomas R. Insel, MD
Director, National Institute of Mental Health

* NIH is currently improving the system for coding disease-related projects. This change may alter the number of projects that are coded as “AD/HD-related” in 2008 and future years; however this will not alter our strong commitment to funding the best basic and clinical research, working to improve the lives of AD/HD-affected individuals and their families.

REFERENCES

Faraone SV, Perlis RH, Doyle AE, Smoller JW, Goralnick JJ, Holmgren MA, Sklar P (2005) Molecular genetics of attention-deficit/hyperactivity disorder. Biological Psychiatry 57:1313-1323.

Kern L, DuPaul GJ, Volpe RJ, Sokol NG, Lutz JG, Arbolino LA, Pipan M, VanBrakle JD (2007) Multisetting assessment-based intervention for young children at risk for attention deficit hyperactivity disorder: Initial effects on academic and behavioral functioning. School Psychology Review 36:237-255.

Polanczyk G, Rohde LA (2007) Epidemiology of attention-deficit/hyperactivity disorder across the lifespan. Current Opinion in Psychiatry 20:386-392.

Shaw P, Eckstrand K, Sharp W, Blumenthal J, Lerch JP, Greenstein D, Clasen L, Evans A, Giedd J, Rapoport JL (2007) Attention-deficit/hyperactivity disorder is characterized by a delay in cortical maturation. Proceedings of the National Academy of the Sciences USA 104:19649-19654.

Vitiello B, Abikoff HB, Chuang SZ, Kollins SH, McCracken JT, Riddle MA, Swanson JM, Wigal T, McGough JJ, Ghuman JK, Wigal SB, Skrobala AM, Davies M, Posner K, Cunningham C, Greenhill LL (2007) Effectiveness of methylphenidate in the 10-month continuation phase of the Preschoolers with Attention-Deficit/Hyperactivity Disorder Treatment Study (PATS). Journal of Child and Adolescent Psychopharmacology 17:593-604.

Sports and Dads

2008-03-26T09:49:00.004-05:00

As a kid I played organized sports, so part of the excitement of being a new father was anticipating watching my son play sports and even coaching him. This happened, but not as smoothly or effortlessly as I anticipated. The introduction of special needs and the child’s individual interests into the equation complicates life and requires modifications in expectations.

I pledged that I would not be one of those overbearing dads who forced sports onto his son. Neither would I be one of those dads who structured sports training programs for their sons that resembled Marine Corps boot camp. And I haven’t—I wanted to introduce my son to the positives of sport. My son has had obvious developmental delays and awkwardness since around the age of one to two. I wanted to introduce Andrew to sports at the appropriate age when his peers were being introduced to sports, as possible options for him to explore.

It took me awhile to understand the tremendous physical and mental effort it took for Andrew to participate in these activities, which did not come naturally. We first tried soccer—it didn’t work. My wife and I had met skiing, so we tried skiing lessons for several years. We stopped skiing after Andrew asked us, “Why do you put me through this?” Andrew tried karate, but didn’t like it. We tried baseball. Andrew liked baseball, but when it turned to kid pitch, he asked to stop playing. He still liked the design and flow of the game, however. We tried basketball and he liked it (Andrew is on the tall side). What made all these sports possible was a policy and practice within our community of residence: Every kid up to the age of 14 who wants to play, plays—and plays equally. Most of the coaches (but not all), most of the parents (but not all), and many of the kids (but not all) support this policy and encourage the kids who are not quite as skilled. Andrew was blessed with several good basketball coaches and I was able to serve as the assistant coach. It was a positive and enjoyable experience for both of us.

While baseball was a challenge for Andrew as a player, he has developed into a knowledgeable and interested fan. During the past few years we have bonded by attending baseball games together and keeping informed about the game. So, while my original hopes did not come through, other enjoyments and bonding experiences did occur. We rarely leave a baseball game early, for as a friend of mine reminds us, “You never know.” You try. You see what sparks an interest. You stay patient, flexible, and supportive. You build on the positives. At Andrew’s high school, he is required to participate in sports programs of his choice. While a great challenge, he also enjoys it. And he is healthier for it.

For many children with AD/HD, it seems that the mother is the key figure in their child’s life. On October 23, 2007, the AD/HD program at the University of Buffalo’s Center for Children and Families issued a press release, “Getting Fathers Involved in Children's ADHD Treatment Programs: Sports Element in COACHES Program Improves Dads' Participation, Relationships with Children.” For many fathers and sons, participation in sports at all levels can build a positive relationship.

During the past several months, CHADD has received letters of frustration from parents whose teen or young adult child was excluded from a non-school organized sports program because they were taking medication for the treatment of AD/HD. A former U.S. Olympic athlete contacted us regarding his dismissal for use of stimulant medications. These requests and recognition of the value of participating in sports encouraged the CHADD board of directors to adopt a statement of issues, considerations, and philosophy when thinking about children under medical treatment and their participation in organized sports programs.

Sport is a vehicle for building relationships and promoting good health. It may be an appropriate vehicle for some. CHADD advocates that anyone properly diagnosed with and treated for AD/HD is assured participation in their sport of choice.

Clarke

Self-Esteem, Bonding, Enjoyment

2008-03-20T13:17:00.003-05:00

My son Andrew and I just completed six baseball spring training games in six days in Florida. We are fans of the Baltimore Orioles and the Boston Red Sox. This is our second time attending spring training. We enjoy it and grow closer given our shared interest.

I received a column published March 4 by child psychiatrist Dr. Michael Jellinek on "Kids and Self-Esteem," and I have been thinking about the topic ever since. Andrew is in eleventh grade and has learning differences and challenges. He passed the state mandatory math exam for graduation and he is very pleased. He missed the mandatory reading exam by a single point. He knows that next year he will pass the reading exam. He was honored for the highest grade in his math class. For a kid with few "accomplishments" during his academic career, each of these events has reinforced his self-esteem. Last year, Andrew came in second in a schoolwide spelling contest. This year he didn't study ahead of time and he went out of the spelling contest early. He has learned that effort is correlated to progress.

Andrew is a whiz at baseball statistics and team rosters. When at a game, many fans, overhearing the observations he makes to me, will ask Andrew questions about players and their situation. Andrew feels confident at the ballpark. He gets reinforcement from strangers about his knowledge. There is a familiarity about being at the ballpark, no matter the team or stadium. We both are knowledgeable fans and love attending. Andrew is a much louder and animated fan than me.

Dr. Robert Brooks has emphasized at CHADD conferences over the years the need for each of us to have and use our "islands of competence." As Andrew grows and matures, his islands of competence continue to expand. He is still very anxious, still socially awkward, still has learning challenges, still has major doubts. But as a father, it is so reassuring to see his growth, maturity, and increasing self-esteem. He's also seventeen. It is a feeling of great satisfaction.

May we always look for and build the strengths of our kids.

Clarke

Medications and the Internet

2008-03-07T12:03:00.003-05:00

Just this week, several news items related to medications and the internet have caught my eye.

The February issue of Behavioral Healthcare magazine emphasizes that "the casual scribbles that pass for handwriting and the extensive use of abbreviations, acronyms, and shorthand dose designations in many doctors' offices" are to blame for miscommunications with pharmacists. More than 12,000 prescription drugs are on the market and 3 billion prescriptions are authorized each year, with similar names, potential contraindications, and multiple formulation and dosage options. The magazine advances the use of e-prescribing to reduce errors, maintain a more accurate medication history, and allow patients and their families to have access to this information. Promotion of e-prescribing is available from the Center for Improving Medication Management. The American Academy of Family Physicians is a founding member of the Center. The Center demonstrates and enhances the advantages of e-prescribing.

While the magazine advances e-prescriptions, the magazine also reports that Drug Enforcement Administration regulations prohibit e-prescribing of "controlled" medications that includes stimulant medications for the treatment of AD/HD. DEA regulations require medical personnel to manually sign prescriptions for controlled medications. Nineteen U.S. senators are considering legislation to allow e-prescriptions.

Meanwhile, the Substance Abuse and Mental Health Services Administration (SAMHSA) published a National Survey on Drug Use and Health (NSDUH) report on the misuse of prescription medications for non-medical uses. Among these are 2 percent of adolescents aged 12 to 17 (an estimated 510,000 persons) who have used stimulant medications at least once for non-medical purposes. The science-based literature discusses the importance of medication as part of a "multimodal" treatment process. Medications need to be prescribed by medically licensed professionals with the legal authority to prescribe using evidence-based guidelines with the informed consent of the consumer and/or family to treat a precise disorder. It is regrettable that there is such misuse. The report documents that the adolescent rate of misuse is twice as high as the rate of adults aged 26 and older. The survey asks people about their illegal use of drugs. The NSDUH report is currently posted on the CHADD National Resource Center on AD/HD Web site under "What's New."

Last Saturday, President Bush devoted his weekly radio address to his administration's proposed 2008 National Drug Control Strategy. The President expressed his concern for the "growing availability of highly addictive prescription drugs online," and focused on painkilling medications. The President called for legislation to prevent internet sales of medications; you can hear the address on the White House Web site; click on Radio under "News" in the "In Focus" column.

While research studies on medications as part of "multimodal" treatment continue, concerns about non-medical misuse continue and administrators are attempting to improve the accuracy and safety of prescribing. CHADD will continue to monitor these developments and share them when appropriate.

Clarke

Kudos for Good Medical Journalism

2008-02-21T11:55:00.001-05:00

Like so many people affected by AD/HD, I get really riled up when I notice misinformation about the disorder being disseminated through the media. Unfortunately, that's quite often. The disorder is important to me both professionally and personally. My teenage son Andrew has AD/HD and other learning challenges. I know what he goes through, so hearing a lot of nonsense from the anti-mental health groups and others who haven't bothered to read up on the disorder really irritates me. They don’t live with the challenges and frustrations that we families do.

As I am sure you are aware, there is still a lot of work to be done to educate the media and the public about AD/HD. However, I find information about the disorder in the media that is science-based to be exhilarating. That was the case recently when I read an article by a columnist at the Herald-Tribune in Sarasota, Florida. The piece was by a Dr. Paul Donohue, who was responding to a question that challenged the validity of AD/HD.

In his answer, Dr. Donohue relied on the scientific findings to effectively address the question posed to him. Basically, the doctor said AD/HD is a real disorder with objective and quantifiable signs. He wrote that "medicines that treat ADHD don't dope children. They allow affected children to control impulses that are otherwise uncontrollable. No medicines should be used indiscriminately, but there is a time and place for the appropriate use of ADHD medicines."

Dr. Donohue's response is good journalism and good information because it's based on the science. We need more people like Dr. Donohue. When we see people like him, we need to thank them for all that they do to set the record straight about AD/HD. If you see an article that you think is particularly good, be sure to write a letter telling the writer or his or her editor what you think. Share the article and your letter with us here at CHADD. It's important that we speak up when we notice good information, as well as when we see misinformation being disseminated.

Here's to positive reinforcement for journalists who do their jobs!

Clarke

Claims Without Science; Promoting Good Health

2008-02-13T14:53:00.003-05:00

My local community publishes a glossy bi-monthly magazine featuring local volunteer leaders who contribute to the quality of community life and showcasing local businesses. A chiropractor recently featured his business showcase column on AD/HD.

He started the column with the claim that between the 1990s and today, children with AD/HD treated by medication rose from 900,000 to "more than 5 million." Now, there has been tremendous growth in the number of children being treated for AD/HD with medication, and there is a lot of concern, discussion, and debate about this. But why make up numbers? The Centers for Disease Control and Prevention (CDC), in a national epidemiologic study, states that there are 4.4 million school-age children with AD/HD, and 2.5 million of these kids typically receive medications. The increase is an important topic - but why exaggerate the numbers, unless the intent is to scare?

The chiropractor then discusses his views of "contributing factors" causing AD/HD. Nowhere does he state the findings of the Surgeon General of the United States, National Institute of Mental Health, and the scientific establishment of America about the neurobiological origins of the disorder. He does claim that "busy families," "fast box food," and "processed food" cause AD/HD. The published peer-review science discounts these as causes of AD/HD.

He does cite the recent Lancet study on food dyes and its link to some hyperactive behavior in children. This is an important study that requires further research. He cites "excessive TV watching" as a cause of AD/HD. There are studies about the negative effects of excessive TV watching on some aspects of early child development, but it is not a cause of AD/HD. That is our challenge. We know that structured family life with proper nutrition, adequate exercise, family support, balanced and educational TV use, and community and frequently faith involvement contribute to healthy living. All these things are important and should be stressed in every family and community. But this is different than a "cause" of AD/HD. This is different than a multimodal treatment approach to AD/HD.

The chiropractor concludes that his clinical experience is that chiropractic care can play a positive role in the life of a child with AD/HD. That is true. I have seen a chiropractor since 1980. I find this helpful to maintaining my overall health. But there is no science that it is an effective or appropriate treatment for AD/HD. We need to assertively promote good health. Promoting good health is not identical to effectively treating a neurobiological disorder known as AD/HD.

Saludos,
Clarke

Prepare to Make a Difference

2008-01-30T15:38:00.000-05:00

Which do you want first – the good news or the bad news?

Let’s get the bad news out of the way. Every indication is that the anti-mental health forces plan to increase their outreach to state and federal policymakers. These forces would like nothing better than to turn back the hands of time in how our country views AD/HD and treats people with the disorder.

Their message? AD/HD does not exist.

But you know better. I know better. And the science shows us that AD/HD is REAL. It also shows that it is highly treatable.

Despite the science, the negative misinformation is detrimental to all the progress we’ve made. The last thing you need is for someone to tell you that AD/HD doesn’t exist. Imagine how much more difficult your life will be if this message resonates.

The good news: Recently CHADD and other leading mental health groups released the State Advocacy Toolkit. (These groups work together under the auspices of the American Academy of Child & Adolescent Psychiatry. The workgroup is chaired by a representative from the National Alliance on Mental Illness.) The toolkit will help you make a positive difference in your state. Before using this helpful resource, be sure to read the letter that was released with it.

Numbers do equal strength, so invite others to get involved. Encourage your friends and family to join CHADD today. Or, better yet, think about buying them a membership. With the forces we’re up against, we’re going to need as many people as we can find.

Let’s get moving!

Clarke

A New Look for the Public Policy Page

2008-01-25T14:27:00.000-05:00

It is my pleasure to alert you to some changes we've made to the Public Policy section of the CHADD Web site. While our work is far from complete, we think you will agree that we're moving in the right direction.

Speaking of moving, that's exactly what we encourage you to do – Get Moving. If you are not already involved, start actively participating in our social movement to help shape the way our society views and treats people affected by AD/HD.

The newly renovated Public Policy section will help you in this endeavor by allowing you to monitor developments, find information (including sample letters) on how to reach out to policymakers, and locate useful information that will assist you in self-advocacy.

Please visit now to get a sneak peek of all of the exciting information and advocacy tips that are yet to come. We look forward to your feedback.

Thank you for making a difference!

Clarke

Helping Students with AD/HD Stay in College

2008-01-16T16:20:00.000-05:00

Many students with disabilities, including those with AD/HD, can handle academic expectations, but easily get overwhelmed with a full academic course load. One accommodation to meeting these learning needs is to reduce the number of courses taken. This is particularly true at the college and university level. We know many young adults through CHADD who are successfully passing their college courses, but are taking several years more than the traditional four years to complete their studies and graduate.

Health insurance plans typically allow adult children who are “full-time” students to stay covered under their parents' health insurance plan. In 2006, the state of Maryland enacted a law mandating health insurance coverage for part-time college students with "documented" disabilities. "Part-time" is defined as "at least 7 credit hours per semester." The law covers students in "accredited institutions of higher education."

On January 13, at a meeting in Harrisburg, CHADD Pennsylvania decided to seek legislative sponsorship and enactment of the “Maryland law” in Pennsylvania. We believe that Maryland is the first state in the nation to have this legal requirement. CHADD actively supports this approach to assisting young adults with AD/HD and related disorders who are seeking college and university education.

CHADD supports more comprehensive supports for adults with AD/HD, but this is one realistic, targeted, and reasonable support that should be able to find majority legislator support.

Here is where you will find the text of the Maryland law. First, go to the Maryland General Assembly homepage. Scroll down the page until you find Statutes, Maryland Statutes, Maryland Code Online (on the Michie/Lexis website), Maryland Code, Insurance, Title 15 Health Insurance, Subtitle 4 Eligibility for Coverage, 15-417 Coverage for Part-Time Students with Disabilities (206, chapter 395). The text of the law is also posted on the CHADD Web site.

Clarke

Youth Involvement

2008-01-04T12:01:00.000-05:00

My son, Andrew, is 17 years old. He has special needs. Trying not to be paternalistic, trying to solicit and respect his views as he approaches adulthood, and trying to share whatever lessons I have learned from life, are challenges.

A fundamental role of CHADD is sharing the lived experience of persons with AD/HD and their families with those who make decisions about our lives—medical professionals, educators, health insurance companies, those who work locally/statewide/nationally as legislators and public administrators, and others. The adult consumer perspective is important. The perspective of parents and other caregivers is important. Soliciting and respecting the views of teens and adolescents is a gray area, particularly when those views aren’t shared by the parents. This is such a perplexing challenge for all families. Add some special needs into the equation and it gets even more confusing.

Through the leadership of CHADD volunteers Chris Dendy, Joan Helbing, and the conference program committee, the CHADD annual conference has increased its focus on the needs and issues of teens and adolescents. Chris and her sons have written books about this challenge. Several years ago my Presbyterian church created a slot on our governing board for a high-school-aged representative. CHADD will continue to discuss how to meaningfully include the teen and adolescent perspective in what we do. In addition to governance concerns and public educational and personal development activities, there is a role for teens in developing financial support activities.

On December 30, the Washington Post published an article, “For Modern Kids, 'Philanthropy' Is No Grown-Up Word.” The article started: “In lieu of presents at her 12th birthday party this year, Maddie Freed of Potomac asked her friends to bring money, and she raised $800 for Children's Hospital.” The article went on: “Young children and teenagers across the nation are getting involved in philanthropy more than ever, according to research and nonprofit experts, who credit new technologies with the rise of the trend. As young people increasingly become exposed to and connected with the problems of the world via the Internet and television, experts said, parents are finding new ways to instill in their children the value of giving. At the same time, technology is democratizing philanthropy so giving is not only easier for people of all ages and means, but also trendier. And children are starting to organize at the grass-roots level to give.”

Avery Zuleger of Appleton, Wisconsin, is one such young man. Nine-year-old Avery wants to change the way people view AD/HD, and to do so, he created his own Web site. After he was bullied on a playground, he designed silicone awareness bracelets with the slogan “ADHD Rocks.” He sells these blue-and-white bracelets through his Web site, and is donating all his profits to AD/HD research and CHADD. Avery has received emails from people all over the world, and has addressed two AD/HD functions. At one of these, a conference held last November in his hometown, he spoke before 700 people, sharing the stage with one of the foremost experts on AD/HD, Dr. Russell Barkley. This is a young man on a mission!

As a father I need all the guidance and assistance I can get on how to meaningfully solicit and respect my son’s ideas and views about his life. Involvement in peer groups, church, and civic associations are venues for him to learn how to share his views and to guide his life. As a guy with special needs who has social skills challenges, he needs more learning opportunities. He and the children identified in this blog are being involved. We, as parents, need to be as supportive and understanding as we can. Welcome to 2008.

Clarke

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

2007-12-10T16:22:00.000-05:00

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

Learning Continues, Even During Thanksgiving

2007-11-27T17:16:00.000-05:00

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

AD/HD is Real and the Earth is Round

2007-11-19T11:58:00.000-05:00

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

Promoting Wellness

2007-10-24T14:37:00.000-05:00

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

Sorting Out Messages About Parenting

2007-10-12T12:42:00.000-05:00

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

Contributing to a Social Movement

2007-09-27T09:45:00.000-05:00

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

Every Day is AD/HD Awareness Day

2007-09-19T21:03:00.000-05:00

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

After High School?

2007-08-29T11:04:00.000-05:00

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.

Clarke

Addressing Mistrust and Disparities Barriers

2007-08-15T12:49:00.000-05:00

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.

Clarke

Together We're Stronger

2007-07-31T13:42:00.000-05:00

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.

Clarke

Studying Treatment, Educating Congress

2007-07-25T10:03:00.000-05:00

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—www.chadd.org for the complete statement from CHADD, and www.help4adhd.org 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.

Clarke