CHADD Leadership Blog

New York Times Bashes ADHD Once Again

2012-02-21T16:19:00.000-05:00

One could easily come to the conclusion that someone on the New York Times Opinion Pages staff has had a very negative experience with ADHD and is on a crusade to blame parents. Just weeks after printing a highly misleading article, “Ritalin Gone Wrong” by Alan Sroufe, the front page of the Opinion section now has a philosophical essay by playwright Hanif Kureishi titled “The Art of Distraction.” Once again someone who has no expertise in ADHD is making highly misleading statements about ADHD and Ritalin.

Don’t get me wrong—I am not pushing medication. CHADD strongly recommends that the decision to choose medication is a personal decision between the patient, the family, and the doctor. Thousands of people deal successfully with the symptoms of ADHD without medication, just as thousands find medication an important part of the treatment process. My own son has been on medication and off of medication, depending on the demands of his life and his coping skills. The decision to medicate or not has to be made based upon the individual needs of the person with ADHD. But that decision should be made based upon good information, not claptrap. And that is my problem with the New York Times, which once again is giving front-page status to utter nonsense in the Sunday Review op/ed section.

So let’s be clear about the facts. When an ADHD medication works properly, there is no stupor and no restraint on creativity. Anyone who experiences a stupor should be visiting his or her doctor immediately. ADHD medications should help your brain to work more effectively. This is not a chemical straightjacket, but rather an opportunity to avoid the many negative consequences of untreated ADHD, such as school failure and a miserable childhood.

The author describes his own troubled childhood, the difficulties his own son is having in school now, and a mythical “Ritalin Boy,” and concludes that suffering and a distracted mind can lead to creativity. In his most appalling passage Kureishi states, “Ritalin and other forms of enforcement and psychological policing are the contemporary equivalent of the old practice of tying up children’s hands in bed, so they won’t touch their genitals. The parent stupefies the child for the parent’s good.” Listen up, folks: According to the New York Times, any parent of a child with ADHD has plopped the child in the bathtub without prior warning, thereby disrupting the wiring of the brain (“Ritalin Gone Wrong”); and, if a parent is so misguided to as to use medication, that parent is chemically restraining the child in the most vulgar terms (“The Art of Distraction”).

In another section, Kureishi describes this as “a moral issue rather than a scientific one; values are at stake here—not facts.” This is in fact both a moral issue and a scientific, factual one. Would we deny a child with diabetes access to insulin because the struggle with their health and potential death would be inspiring? Would we refuse to allow a child to see properly with a pair of glasses, because the resulting visual haziness might lead to some artistic creativity? How could the New York Times continue to be so irresponsible? This is so much more than adding insult to injury. This is gross negligence and does irreparable harm. Fortunately the members of CHADD know this is nonsense, but I worry greatly about the family new to ADHD that reads such garbage and assumes that it must be credible if it appears in the New York Times.

In full disclosure please note that following the publication of “Ritalin Gone Wrong,” CHADD sent a letter to the editor and an opinion/editorial article by Max Wiznitzer, MD, a member of CHADD’s Professional Advisory Board. Neither was published.

So what are we to do? Well, there are several things that can be done—and we need your help.

1. Take a moment to go to the comment section at the end of the article and tell the New York Times what you know about ADHD.

2. Send an email to the public editor, expressing your dismay at the incredibly irresponsible behavior of the New York Times op-ed staff.

3. If you are by chance an advertiser in the Times, please take note. Reconsider sending your advertising dollars to a business that regularly spreads highly prejudicial misinformation.

We cannot allow such blatant misinformation and discrimination to continue to thrive. Please take a moment to act on behalf of all those you love who have ADHD.

Ruth Hughes, PhD, is the CEO of CHADD.

New York Times Article Blames Parents for ADHD

2012-02-07T16:50:00.001-05:00

by Ruth Hughes, PhD

A week ago the New York Times published an article by Alan Sroufe, "Ritalin Gone Wrong," that questions the need for medication in the treatment of ADHD. Even worse, the author claims that parents and environmental stressors are the major causative factor in ADHD. A firestorm of reaction, both positive and negative, has uncovered some deep rifts in our public understanding of ADHD. There are those who are jumping on the bandwagon and decrying families that think a pill is all that is necessary to help a child with problems. (I don’t know any families like this, but I’m sure there must be one somewhere.) And there is the ADHD scientific and advocacy community, who are appalled that information so flawed would appear in the New York Times.

While there is much to be upset about in these claims (and I have been very upset!), there are several assertions that are worth recognizing. There are bad parents in the world, people who do not have the skills, the resources, or the will to be good parents. And the impact on their children, who may or may not have ADHD, is usually negative. Helping these children is one of the major challenges of our society.

I also agree that pills alone rarely are sufficient treatment for ADHD. As the mother of a now-adult son with ADHD, it took a lot more than medication to help him become a productive adult. CHADD always encourages a combination of treatment, parent training and support, school support, and behavioral interventions for any child with ADHD. Medication can help a child focus and be more amenable to learning, but the skills and external supports also need to be put in place.

What is most troubling (and enraging) about this article is that we are back in the dark ages, blaming parents, particularly mothers, for a child’s ADHD. In the article’s most egregious example the author, Alan Sroufe, claims that along with other stressors, ADHD is caused by “patterns of parental intrusiveness that involve stimulation for which the baby is not prepared. For example, a 6-month-old baby is playing, and the parent picks it up quickly from behind and plunges it in the bath. Or a 3-year-old is becoming frustrated in solving a problem, and a parent taunts or ridicules. Such practices excessively stimulate and also compromise the child’s developing capacity for self-regulation.” Excuse me! Does Dr. Sroufe or anyone with a fundamental knowledge of ADHD really believe such nonsense? There is no scientific basis for his claim of “parental intrusiveness” as a factor in the development of ADHD. He is espousing theories that are now decades old and have long since been debunked and surpassed by our research on this disorder.

What is most disturbing, though, is how many people want to believe that it is Mom’s fault. Not so long ago we blamed depression, autism, schizophrenia, and many other mental disorders on parenting. We now know that there are genetic and neurological causes for these disorders just as we know there are genetic and neurological factors in ADHD. Only if we confront this stigmatization and discrimination whenever we see it or hear it, will it disappear once and for all from our culture. Every one of us must confront these beliefs, if we are to set this to rest once and for all. Speak up and speak out. Do not let these beliefs continue to flourish.

CHADD and a number of other ADHD experts responded to the Times article, pointing out the inaccuracies and errors, and countering the claims made by Dr. Sroufe. While they take many different approaches to confronting these issues, all provide great information.

CHADD’s Letter to the Editor of the New York Times

Dr. Edward Hallowell, Response to NY Times Piece “Ritalin Gone Wrong”

Dr. Harold Koplewicz, “Righting the Record on Ritalin”

Time Magazine Columnist Judith Warner, “ADHD: Is Stigma Back in Style?”

In addition, Dr. Max Wiznitzer from CHADD’s Professional Advisory Board has submitted an article to the New York Times as a counter to the article by Dr. Sroufe. We are waiting to hear if it will be published, but will share with all of you in the near future.

Ruth Hughes, PhD, is the CEO of CHADD.

ADHD Medication Shortages: Your Information Needed Today

2012-01-09T13:13:00.003-05:00

As you know, CHADD is very concerned about the current shortage of medications to treat ADHD. No one seems to have a good handle on the extent of the shortages. If you would take just a moment to answer a few questions about your personal experience with the availability of your medication, then CHADD will know much more about the extent of the problem, all the medications being affected, and the geographic distribution. It is important that we hear from people who are not having problems as well as those who are. We need both sides of the picture.

Answer this quick, anonymous survey, which includes the following questions:

• What is the name of the ADHD medication you normally use and the dosage?
• Are you having any problems with getting your prescriptions filled?
• What city and state do you live in?
• Have you had to change medications because of the shortages?

As CHADD works in Washington to address the causes and management of the shortage, it is important that we have as much accurate information as possible. CHADD’s mission is to provide its membership with a unified and strategic voice to policymakers. We are also partnering with other organizations to determine the extent of this issue and to amplify our voice in effecting positive change.

We will keep you updated on the results of the survey, our meetings with key policymakers in Washington, and what you can do to advocate for a more effective system of dealing with shortages. And we will keep you informed about CHADD’s concerns about diversion of medication and what you can do to keep medications from being used inappropriately.

If you would like some tips on how to find a pharmacy that can fill your prescription, check out "Shortages of ADHD Medications."

If you want information on what has led to the shortages, read "Why Can’t I Get My ADHD Medications?"

Completing the survey will take you less than a minute. Thank you for your help in this matter, and for your immediate cooperation.

Ruth Hughes, PhD
CHADD CEO

Robert Tudisco, JD
CHADD Public Policy Committee

Why Can’t I Get My ADHD Medications?

2012-01-05T13:08:00.007-05:00

by Ruth Hughes, PhD

Are you having difficulty getting your prescription for stimulant medication filled? Particularly if you have a prescription for amphetamine mixed salts (the Adderall generics), or more recently for immediate-release methylphenidate (Ritalin generics), you may find that your pharmacy is out and unable to tell you when they will get more.

In a previous blog, CHADD’s Tim MacGeorge developed some guidance on what to do if you are in this dilemma. This blog will explain what is causing the problem and what CHADD is doing to address it.

The shortages began last spring and all parties thought it would be a short-term problem. But now it is six months later and the problem is getting bigger, not smaller. To understand the problem, it helps to understand the process:

• Stimulant medications are considered Schedule II controlled substances and their production comes under the purview of the Drug Enforcement Agency (DEA). The DEA’s mission is to ensure that controlled medications are not used for nonmedical purposes.
• Pharmaceutical companies that manufacture stimulants apply to the DEA for permission to purchase a certain amount of the "active pharmaceutical ingredient" (API). This is the controlled substance within the stimulant medications.
• At the beginning of each calendar year, the DEA approves each company for a certain amount of the API. It is normally less than requested by each company, and the aggregate of all awards is the DEA’s best guess of the legitimate need for the year.
• Once approved, the company purchases the API and begins manufacturing the medications. It usually takes 8 to 12 weeks for the medications to be manufactured.
• And then they go to market.

Where Does It Go Wrong?

It only takes one company that has a problem in delivering its portion of the market share for the dominoes to begin to fall. Because each company is limited to a certain portion of the active ingredient, the companies are unable to step in when another company is having problems. Or if the DEA is wrong in its estimates of the number of legitimate prescriptions that will be written, then a shortfall can occur. Or the amount of medication may be correct, but the geographical distribution of the medications by all the companies involved may not lead to an even distribution across the country. The shortage continues until the original problem is solved.

Companies can go back to the DEA and request more of the API, but the application process is long and cumbersome. If the shortage occurs close to the end of the calendar year, companies are more likely to wait for the new annual award of API.

When all goes well, each pharmaceutical manufacturer has enough inventory to carry over into the new year until spring, when the production started in January actually reaches the market. This year the inventories are very low or nonexistent, raising concerns that there will not be sufficient medications available to make it until spring.

If the shortage continues for a while, as it has for ADHD medications, then other things begin to happen. Over time, physicians begin to change prescribing habits to other medications that are more readily available, such as the short-acting methylphenidate medications. But again, production of these medications is limited by the DEA. As a result, the shortage is spread to a new group of medications.

Some pharmacies or chain store distribution centers may begin to stockpile the medications, in anticipation of the shortages. This then aggravates the shortages in other areas.

Unfortunately, no one agency or manufacturer owns the problem. The Food and Drug Administration has responsibility for addressing medication shortages, but has no authority with the Drug Enforcement Agency. The DEA feels that it has a limited role of ensuring only the amount of medication legitimately needed is manufactured and the possibilities for diversion are reduced. And the manufacturers cannot respond quickly to shortages caused by internal problems or by other manufacturers because their production is limited by the DEA. As a result, there is a fair amount of finger pointing and little problem solving.

What Is the Short-Term Outlook?

Not great. Many of the companies that manufacture the short-acting stimulant medications report they have no inventory left or limited inventory. Given the manufacturing time lag of 8 to 12 weeks, it is unlikely that the 2012 DEA-approved medications will get to market until March at the earliest. No one seems to be able to estimate the amount of medications currently in pharmacies across the country. You should anticipate that getting your prescriptions filled for short-acting stimulants in particular, and all stimulant medications in general, may get more difficult as we move into the new year. So plan ahead.

Work closely with your physician and allow enough time before your current prescription is gone to actively search for a pharmacy that has your medication. Prescribing physicians and patients may need to consider long-acting, time-release medications rather than short-acting medications. If you have been purchasing the less expensive generic medications, you may need to consider the more expensive, name-brand medications. And you might need to consider a different delivery method such as the skin patch or liquid medication. Another option may be to try one of the nonstimulant medications that treat ADHD.

What Is CHADD Doing?

Given the manufacturing time lag, our current shortage seems destined to play out. But we can work to make sure this does not happen again. CHADD has been speaking out about the problems to the media to help raise awareness of the issue. Almost every day we are contacted by a major media outlet covering the story. We have been in touch with all the major and many smaller pharmaceutical manufacturers who make stimulant medications to clearly understand the scope of the problem and what steps might make it better. And we are organizing a coalition of concerned groups with the American Academy of Child and Adolescent Psychiatry. Other groups who have joined with us include patient advocacy, clinician, and pharmacy-related associations. The larger our coalition, the more power we will have to influence the agencies involved and Congress.

In early 2012, we will be meeting again with officials from the FDA and the DEA, and ultimately, with key senators and congressmen who can influence the policy of these agencies. We are determined to make sure this problem is solved. CHADD will continue to keep you informed about the shortages and what you can do to help us address this issue. While we may need to weather this storm, we will do all we can to make sure it does not happen again.

Ruth Hughes, PhD, is the CEO of CHADD.

PHOTO: Wikimedia Commons

Coaching Can Empower Youth with ADHD

2011-11-07T11:18:00.000-05:00

Today's guest blog is by Jodi Sleeper-Triplett, MCC, SCAC.

I am counting the days until the CHADD conference in Orlando and imagine that you are equally excited! There are many reasons for my excitement—reconnecting with friends and colleagues, meeting new people and learning from the many ADHD experts from around the world. I am especially pleased to have the opportunity to share my passion for coaching youth with ADHD with the conference attendees. My breakout session, Empowering Youth with ADHD: Coaching Toward Success, is on Friday morning, following a must-see opening session with Rick Green, Patrick McKenna, and Umesh Jain.

For many adolescents and young adults with ADHD, coaching helps them learn techniques to become more focused, stay on task, and improve time management and organizational skills.

Coaching is a beneficial tool for many young people. At this stage of life, adolescents and young adults are yearning for independence, but they lack the basic skills for success. Life skills can be fostered through coaching and may include self-care, socialization, financial responsibility and self-advocacy. Each client is an individual, with unique needs. The coaching process is designed to meet the needs of the individual. This is not a one-size-fits-all process.

Choosing a coach who has experience working with adolescents and who understands the intricacies of the ADHD brain, medications and co-existing conditions is of the utmost importance. It is essential to work with a coach who has a good rapport with the client. The connection between coach and client, of any age, is essential for coaching to be a success.

Attendees will learn how starting the coaching process with adolescents and young adults with ADHD leads to improved executive functioning skills and self-confidence, leading also to greater success in adulthood. Through coaching, we are able to increase motivation, self-awareness, independence and self-worth. I will share the JST coaching model for successful youth coaching, focused on the whole person, not just on academics. As adults, if we don’t pay attention to ourselves and manage both our personal and professional lives, we struggle. Young people with ADHD experience the same problems and coaching helps!

This interactive session will provide background on the common difficulties faced by adolescents and young adults with ADHD. We will discuss the importance of confidentiality between coach and client and how parents can adjust to their role outside of the coaching partnership. Coaching demonstrations will provide concrete examples of the value of coaching for adolescents and young adults with ADHD. Young adults considering coaching are encouraged to attend.

I enjoy the opportunity for Q & A at the end of my sessions and throughout the conference. Often times you can find me chatting with others in the hallways between sessions, answering questions about coaching and learning from others what works and does not work for them or their children. So, when you see me at the conference, please tug at my sleeve and let’s chat!

See you in Orlando!

Jodi Sleeper-Triplett, MCC, SCAC, is the president of JST Coaching, LLC and the author of Empowering Youth With ADHD (Specialty Press/ADD Warehouse, 2010).

Stress and Kids with ADHD

2011-11-03T08:44:00.001-05:00

Today’s guest blog is by Jerome Schultz, PhD.

I have often said it’s fairly easy to diagnose ADHD and LD. What’s difficult is explaining the results of testing to students at a developmentally appropriate level so that they have a clear understanding of their challenges.

Way too many kids with ADHD and LD have no clue about how to conquer their challenges. Too many of them think of themselves as stupid. They confront challenges with an “I can’t” attitude. This way of greeting a task triggers the stress response in the child’s brain. You can hear the brain singing this tune now: We gotta get outta this place…if it’s the last thing we ever do! Even when kids hear teachers and adults say “I know you can do it,” this vote of confidence often puts them under more pressure. They think: “Easy for YOU to say, Mrs. Johnson!” I’ve been there—and I’ve failed.” So why are we surprised when they fight or flee? For kids under the chronic stress of ADHD and LD, there’s simply nowhere to run… nowhere to hide.

I invite you to attend my session at the CHADD conference in Orlando next week to learn how stress gets in the way of learning, and how if it’s not addressed, can lead to a deterioration in actual brain function.(Talk about going from the frying pan to the fire!) Learn how the DE-STRESS Model can turn this around and head kids in the direction of success. You’ll like what you hear. This approach costs NO money and it WORKS!

Want more of a preview? Check out my website and learn about my new book, Nowhere to Hide: Why Kids with ADHD and LD Hate School and What We Can Do About It, which forms the basis for this stress-reducing, cartoon-laced session at CHADD's conference. There will be a book signing after the event. Hope to see you there. Sign up early. Rumor has it that this will be a standing-room-only event!

Jerome Schultz, PhD, is a clinical neuropsychologist who specializes in the diagnosis and treatment of children and young adults with learning disabilities, ADHD, and other special needs. He is on the faculty of Harvard Medical School.

Beyond Medications

2011-10-31T11:02:00.001-05:00

Today’s guest blog is by J. Russell Ramsay, PhD.

If adults with ADHD could only have one treatment for their symptoms, research indicates that pharmacotherapy, particularly the use of stimulant medications, is the single most effective option for reducing the core symptoms of ADHD. However, medications alone may represent insufficient treatment for the many difficulties experienced by adults with ADHD, such as disorganization, procrastination, poor time management, mood and anxiety issues, and low self-esteem, to name a few.

During CHADD’s Annual International Conference on ADHD, my session on adjunctive treatments for adult ADHD will be held on Thursday, November 10. The session will cover the current status of various non-medication treatments for adult ADHD that are often used in combination with medications in order to help individuals achieve improved overall well-being and functioning in addition to symptom relief. Here is a brief overview of those treatments.

Psychosocial treatments. Many standard psychotherapy approaches have been modified in order to more effectively address the typical coping difficulties faced by adults with ADHD. In general, cognitive-behavioral therapy (CBT) approaches for adult ADHD, which focus on modifying self-defeating thought and behavioral patterns, have been found to be a useful adjunct to medications in several published studies, including recent randomized controlled designs comparing CBT with other active treatments. Sessions focus on the development and consistent implementation of coping skills in daily life. Psychosocial treatment, namely CBT for adult ADHD, stands out as the adjunctive treatment with the strongest research support.

Coaching. Although not the same as CBT, ADHD coaching shares the goal of helping adults with ADHD to employ more effective coping strategies to fulfill their personal goals. ADHD coaches target specific coping difficulties, such as disorganization and poor time management, and help clients develop and follow through on action plans. While the benefit of coaching support makes logical sense and it is an increasingly available option, to date there has been only one published study of its effectiveness for adults with ADHD adults.

Academic support and accommodations. Similar to ADHD coaching, while academic accommodations targeting specific areas of impairment make logical sense, such as extended time to complete an exam, these adjustments do not have research support. There are many informal steps that students can take to manage the effects of ADHD on their academic performance. However, there are preliminary studies of learning support and coaching approaches for college students with ADHD that have yielded positive results, making it a promising option.

Workplace support and accommodations. Workers with ADHD whose impairments fulfill the legal definition for a disability may be entitled to reasonable workplace accommodations, though most adults with ADHD do not pursue official accommodations. As with students, there are many informal adjustments in the work setting, assistive technologies, and other coping tools that may be helpful for adults with ADHD. As with academic accommodations, the effectiveness of these coping efforts has not been systematically studied.

Relationship treatment. Research on the effects of ADHD throughout the lifespan has increasingly identified its negative impact on family and social life for both children and adults with ADHD. The parents and caregivers usually participate in treatment programs for their children with ADHD, though they are rarely screened for ADHD despite high heritability rates. In fact, parental ADHD (even in sub-clinical form) is likely a common reason for dropout in family treatment programs for child ADHD and/or oppositional behavior.

Similarly, there may be unique difficulties faced in marriages and committed relationships in which one or both partners has ADHD. No studies have yet been published on either marital or family therapy involving adults with ADHD.

Neurofeedback and working memory training. Proponents of neurofeedback training cite numerous studies of its effectiveness, though there have been few studies using samples of adults with ADHD. Critics of neurofeedback, on the other hand, point out that many of the studies are case reports or have serious methodological flaws that cast doubts on their findings. A review of the few studies involving adults with ADHD suggests a middle-ground conclusion that neurofeedback has tentative support. There have been some recent studies of neurofeedback for children with ADHD that used improved research designs.

Computerized working memory training has yielded some positive results in samples of children with ADHD and such training would seem to be helpful for adults, though there have not yet been published reports involving adults with ADHD. However, as with neurofeedback, even if the therapeutic effects are reliable it remains unclear precisely how these interventions work and whether the positive effects generalize to improved functioning in day-to-day life.

Complementary and alternative treatments. There is a wide array of what are deemed “alternative” treatments for ADHD, such as nutritional supplements, specialized exercise programs targeting certain brain regions, dietary approaches, etc. There is preliminary evidence that omega-3 fatty acid supplementation may result in mild improvements in some ADHD symptoms, though these are based on studies of children. Likewise, pilot research of mindfulness meditation suggests it is associated with some improvements for adults with ADHD. There are obvious health benefits of mineral supplementation in cases of identified deficiencies; likewise, exercise, healthy diet, and other good health practices should be part of an overall wellness plan rather than being considered “treatments” for adult ADHD.

There are a number of treatment options for adult ADHD that can be used in combination with medications to target specific areas of impairment. A few of the treatment options have relatively strong support and some others have promising but preliminary evidence for their use while still others have not been found to be helpful. It is important to personalize the combination of treatments to meet the needs of the adult with ADHD in order to optimize functioning and well-being.

J. Russell Ramsay, PhD, is associate professor of clinical psychology in psychiatry and co-director of the Adult ADHD Treatment and Research Program at the University of Pennsylvania Perelman School of Medicine.

Making Homework Simple

2011-10-27T14:49:00.000-05:00

Today's guest blog is by Ann Dolin, MEd.

Helping with homework can be a humbling experience, and this is especially true when you are the parent of a child with ADHD. All too often, parents find themselves cast in the role of the nightly homework police, and the divide this role creates can be one of the most painful aspects of parenting.

My presentation during CHADD’s Annual International Conference on ADHD in Orlando this November will bring you proven solutions for even the most challenging homework issues.

In this workshop, parents and professionals will learn specific strategies for each of the common, yet challenging homework profiles that students present when pressured by homework. They are:

o The Disorganized
o The Rusher
o The Procrastinator
o The Avoider
o The Inattentive
o The Easy Frustrated

Novel strategies to address each issue will be shared. These include:

• Easy solutions for setting up the Simple Solution binder system, including an accordion file and one dedicated homework folder.
• Identifying optimal homework spaces (there should be more than one!) and organizing portable materials.
• Simple tips for encouraging students to record their assignments accurately whether it be a paper assignment notebook or one of the cutting-edge electronic calendars.
• Prioritizing, planning, and managing long-term assignments. Quite often, students with ADHD have great difficulty breaking down large tasks into smaller increments.
• Ways to reduce procrastination and eliminate last-minute stress by using a timer, study groups, and other self-regulation strategies.
• Novel study skills for academic success such as easy note-taking ideas, using color for comprehension, creating study guides, and proofreading strategies.
• Strategies to encourage on-task behavior such as the use of the Tangle Jr., Wikki Stix, timers, and software.
• Solutions for finding the balance between helping too much and not enough.
• And for educators, best practices for assigning homework to ADHD students.

Above all, participants will learn how to help children do the most important things when it comes to homework – focusing and finishing!

I look forward to seeing you on Saturday, November 12th from 3:30 to 5:00. This workshop is DEFINITELY worth staying for until the end of the day!

Most sincerely,

Ann Dolin, MEd

A recognized expert in education and learning disability issues, Ann Dolin, MEd, sits on the board of CHADD of Northern Virginia and the International Dyslexia Association. She is the author of Homework Made Simple — Tips, Tools and Solutions for Stress-Free Homework.

“Hey, I Need Help Too!"

2011-10-24T15:13:00.001-05:00

SURVIVAL TIPS FOR THE NON-ADHD SPOUSE

Today's guest blog is by Terry Dickson, MD, ACG.

The profound impact ADHD can have on marriage is well known. Less emphasis has been directed toward what a non-ADHD spouse married to an ADHD spouse truly experiences and what competencies, skills, and techniques are most effective for strengthening the relationship with a partner who has ADHD. A few of the questions a non-ADHD spouse may have are:
1. How can I understand the hard-wiring of my ADHD spouse? What are the traits of ADHD that tend to get in the way of the relationship?
2. How can I effectively communicate with my ADHD spouse when he/she has challenging communication skills?
3. How can I effectively cope with the frustrations of daily life with my ADHD spouse?
4. How can I work with my ADHD spouse to reach his/her full potential in the context of a healthy marriage?
5. Am I to blame for my ADHD spouse’s behavior?

Who are non-ADHD spouses? What do they experience that brings them to their wits end, that makes them want to divorce, or yell, feel unloved, tense up in a ball of frustration, or scream in anger?

Come join me as we explore these questions and more on Thursday, November 10, 2011 for a pre-conference institute from 9 am until noon at CHADD's 23rd Annual International Conference in Orlando, Florida.

During the presentation, my wife (who is a non-ADHD spouse) will talk about her experience being married to a person with ADHD (me). We will discuss how we have been able to work together effectively to strengthen our relationship. You will also hear the experiences of other non-ADHD spouses I have videotaped. You will gain a better understanding of the impact the behaviors of a person with ADHD has on a non-ADHD spouse and tips for strengthening your relationship for a lifetime.

To your success,

Terry M. Dickson, MD, ACG

Terry M. Dickson, MD, ACG, is an ADD Relationship Coach. He is also the founder and director of the Behavioral Medicine Clinic of NW Michigan, and has been principal study investigator for several clinical ADHD medication trials.

Understanding Cyberbullying

2011-10-20T13:02:00.000-05:00

TRENDS & FREQUENCIES, ANXIETY & INTERPRETATIONS

Today’s guest blog is by Meghan K. McCoy, MEd.

Bullying—the repetitive, targeted and intentional, peer-on-peer abuse inflicted among two people in an unequal power relationship—has been in existence for as long many of us can remember. High-profile cases, tragic consequences, and increasing legal sanctions have aided in bringing this important topic to the forefront of our consciousness. Now that we all recognize the problem, it’s imperative that we begin to understand it from an evidence-based perspective!

This peer-on-peer abuse is not restricted, or even most rampant, in the hallways and classrooms of our schools. It has also invaded the online world of children and teens. We call this online abuse cyberbullying. In a world where youth are spending increasing amounts of time online, educators and professionals working with these digital natives will inevitably be faced with the fallout of this online abuse. A better understanding of digital natives, those who have “grown up online,” as well as the trends, frequencies, methods, and motivations of cyberbullying behaviors is crucial in helping to keep youth safe and responsible in their online use.

Join me at CHADD’s Annual International Conference on ADHD in Orlando to learn best-practice tools and techniques for preventing and responding to bullying and cyberbullying.
• What advice can we offer to victims and bystanders?
• What specific principles do the kids need to know about their online behavior?
• How can understanding the common characteristics of digital natives help us in combatting these issues?

Come to CHADD’s conference and let me share the some of the newest research with you!

Meghan K. McCoy, MEd, is the program coordinator of the Massachusetts Aggression Reduction Center at Bridgewater State University.

Friends Are Important

2011-10-13T12:09:00.000-05:00

This week's guest blog is by Ari Tuckman, PsyD, MBA.

I always look forward to the CHADD conference. As a psychologist and presenter, there's no better place to learn about ADHD from the biggest names in the business. But honestly, my biggest reason to look forward to it is that I have so much fun with my friends there (my wife calls them my "CHADD buddies"). Unfortunately, since most of these friends aren't local, I only see them at the conference. Sure, phone and email are good but they're not as good as the real thing of being together in person.

So it's fitting that this year I'll be presenting Everyone Needs Friends: Even (Especially) Adults with ADHD. It's hard to find the time to stay in touch with friends, whether they're local or far away. I know this very well from personal experience, as I juggle work obligations, giving time to my family, and staying in contact with friends. Far too often, work and family get most of my time and my friends get a quick email. I know I need to keep a better balance, but it's a real challenge. It also seems like I have more and more clients talking about similar struggles. Like me, some don't feel like they have enough time for friends. Others have the time but don't know how to make those friendships happen. In both cases, we feel like we're missing out. And we are.

So that's why I wanted to present on this important but often overlooked topic this year. It's a universal struggle, but folks with ADHD often have some additional challenges because of the way that typical ADHD behaviors tend to be interpreted. This then influences how others see the person with ADHD which feeds into how that person sees himself. Self-esteem and self-image interact with relationship dynamics. My goal for this presentation is to help attendees better understand themselves and others, so that they can create friendships where everybody feels better.

Hopefully I'll see you at my presentation on Saturday morning at 10:30. But you can look for me and my friends each night at the hotel bar. We'll be the ones laughing and making a bunch of noise.

Ari Tuckman, PsyD, MBA, is a psychologist in private practice who specializes in the diagnosis and treatment of children, teens, and adults with ADHD, anxiety, and depression. He is the author of More Attention, Less Deficit: Success Strategies for Adults with ADHD (Specialty Press, 2009).

Saving SSI for People with ADHD

2011-08-24T12:20:00.006-05:00

This week's guest blog is by Soleil Gregg.

Imagine that you have a child with very severe ADHD symptoms, serious behavior problems, and a recent expulsion from school. Then imagine that you have no job and very limited resources to pay for treatment, medication, or assistance for your child.

This is the plight of many families who apply for Supplemental Security Income for their child with a disability. SSI is a program of Social Security that provides assistance for children and adults with disabilities who are living in poverty. Recently this program has been threatened.

Since its founding in 1987, CHADD has worked tirelessly to improve the lives of individuals with ADHD through education, advocacy, and support. The fruits of this labor have been increased understanding of ADHD as a neurobiological disorder and recognition that the disorder can be debilitating throughout the lifespan. Thanks in part to CHADD’s efforts, eligible children with ADHD are now able to receive education services under Section 504 and IDEA, college students and adults with ADHD may be eligible for accommodations under the ADA in the classroom and workplace, and children and adults who are severely affected by ADHD and meet incomes guidelines may qualify for SSI to help with their care and treatment.

But just when we are feeling good about the strides we’ve made over the years to improve the lives of people with ADHD, something comes along to shake us out of our complacency and make us aware of just how tenuous these gains might be. Such was the case when we learned that SSI for children with ADHD was in jeopardy.

Last fall the Boston Globe ran a series of articles on SSI fraud, claiming that some low-income families have their children diagnosed with ADHD and give them “drugs” solely to get SSI, implying that a substantial number of children are being misdiagnosed with ADHD and unnecessarily medicated by doctors and parents. While CHADD certainly doesn’t condone fraud, the Globe articles presented no real evidence that there is fraud in SSI—only a few anecdotes.

In fact, the number of children who are approved for SSI for ADHD is relatively small, given current knowledge of the incidence of ADHD. In order to be eligible for SSI, a child must have a diagnosis of ADHD (or another disability) and meet very restrictive functional criteria and income guidelines. SSI is intended to be reserved for those in financial need with the most severe impairment. Recent SSI data showed that nearly 71 percent of children applying for SSI for ADHD were denied approval, ranking ADHD in the lowest quartile of approval rates for childhood mental disorders.

Nonetheless, the Globe series raised concerns in Congress and prompted several members to request an investigation of SSI by the U.S. Government Accountability Office (GAO), particularly focusing on children with ADHD, depression, and other mental impairments.

CHADD began working with the SSI Coalition for Children and Families, spearheaded by the Bazelon Center for Mental Health Law, to address Congressional concerns and to preserve SSI for eligible children with ADHD and other mental health disorders. Then, to make matters worse, we learned that the House Budget Committee had added language to its budget report to remove “incentives for parents to place their children on medication solely to receive SSI benefits” and, more recently, to specifically eliminate ADHD from SSI altogether as part of spending cuts.

During the week of July 21, the SSI Coalition managed to arrange a briefing with Senate Finance Committee staff despite the looming debt ceiling crisis. CHADD identified a mother, Suzanne Poe, whose child receives SSI for ADHD and who was willing to come to Washington on a moment’s notice and share her family’s experiences. Suzanne and CHADD CEO Ruth Hughes met with staff from seven Congressional offices in addition to Finance Committee staff.

I am happy to report that these meetings were very successful, and Suzanne was a fantastic voice for families. The very best news we heard is that the proposal to take ADHD out of children’s SSI is now off the table and no longer part of the overall budget negotiations—that ADHD is no longer a target.

But we are not out of the woods yet.

There are still discussions about limiting the SSI program, and many programs will surely face cuts under the debt ceiling agreement. In addition, the Homeland Security and Government Affairs Committee has requested the GAO to look at “waste and abuse of prescribing practices” for children in foster care, and another group of senators and representatives has asked the GAO to look at rates of mental health conditions and medication use in children in Medicaid, the Children’s Health Insurance Program (CHIP), and foster care. We have also learned that Secretary Kathleen Sebelius of the U.S. Department of Health and Human Services has a special interest in medications for mental disorders in children enrolled in Medicaid and CHIP.

CHADD will review the GAO reports when they are released. We will keep you posted on events as they develop and let you know what you can do to assist us in protecting the rights of people with ADHD.

Rest assured that CHADD will do its very best to educate policymakers on Capitol Hill about the challenges facing children, adults, and families with ADHD. CHADD will work to preserve the hard-fought gains we’ve made in recognition, treatment, and services over the past 24 years.

Soleil

Soleil Gregg is past secretary of CHADD’s board of directors and past chair of the public policy committee and editorial advisory board for Attention magazine. She represents families with ADHD for CHADD on AACAP’s Pediatric Pharmacology Initiative and is a member of the SSI Coalition. She is a retired education consultant and worked as a disability and policy specialist at one of the regional educational research laboratories and regional technical assistance centers. She is a mother of two grown children with ADHD and is also an adult with ADHD.

CHADD's NRC Needs You!

2011-08-09T11:47:00.003-05:00

by Mary Durheim

To all my friends and colleagues in the world of disability—this is a National Call for Action!

Those of you who know me know that I do not Tweet, seldom correspond via Facebook, avoid blogs, and never participate in chat rooms. The mere fact that I am writing this blog posting is a sure sign that we who are touched by disability—either as a person with a disability, or as that person’s parent(s), sibling(s), relative(s) or friend(s)—are facing something important.

I’m writing to tell you of a national challenge with potentially devastating consequences for millions of Americans with physical and mental disabilities. I’m writing to ask for your help!

I write specifically on behalf of CHADD’s National Resource Center on ADHD (NRC), but this issue directly impacts millions of people with disabilities and the organizations that are usually the only voice for individuals and families like ours.

For Fiscal Year 2012, the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) is planning to eliminate specific funding for programs that support people with disabilities such as ADHD, spina bifida, muscular dystrophy, limb loss, and paralysis.

Instead of sharing the burden of decreased funding among all of the disability programs it currently supports, government bureaucrats have decided to play a game of winners and losers. In this game, some programs or conditions will continue to be funded at current or even higher (!) levels, while others will simply not be funded at all.

Does that seem fair? Does that seem right? If there’s not enough stew in the dinner pot, is any mother going to feed two children their full portion and tell the third child, “There’s none for you”? Of course not! Everyone should still have a place at the table and the burden of less should be shared by all!

Instead of sharing the burden in these tough economic times, the bureaucrats call their plan “consolidation.” But to us, it looks more like “elimination.” Over the past few months, a coalition of disability organizations has met numerous times with CDC officials to learn more about what this “consolidation” means. Like many of their colleagues, CHADD representatives came away from these meetings wondering where ADHD fits in.

NCBDDD and ADHD

Established by an Act of Congress in 2000 (P.L. 106-310), the NCBDDD impacts the health of millions of our nation’s most vulnerable citizens: infants and children, people with blood disorder, and people with disabilities. NCBDDD is the only CDC center whose mission focuses on these populations. (In FY2010, NCBDDD was funded at $143.6 million and at $136.1 million in FY 2011, a decrease of 5.25%, while the National Resource Center on ADHD had a decrease in funding of 7.16% during the same period).

Consolidation of programs or elimination of the NCBDDD disability division would be disastrous.

For families dealing with ADHD, these changes would continue to seriously jeopardize the funding base that supports CHADD’s National Resource Center on ADHD (NRC). Think back to when you, your child, or family member was first diagnosed. Where did you go to find reliable information? Where will you go in the future to stay up to date with the most current research and appropriate interventions?

I still painfully remember when my son received his diagnosis, including but not limited to ADHD. I was scared, had little to no information, and had no one to talk to. Don’t you remember the day you received the “diagnosis”? Yes, there’s a lot of information online, but not all of it is reliable or unbiased.

In addition to providing only science-based information, the NRC is the only resource center that has trained specialists that people can actually talk with. Elimination of public funding for the NRC would essentially destroy much of the progress that has been made over the past ten years.

NCBDDD and NRC Successes

It is currently estimated that one in 33 babies in the United States is born with a birth defect and approximately 13% of children have a developmental disability. The NCBDDD funds surveillance, research and prevention activities aimed at helping us track, understand, and ultimately prevent these disorders. The success of NCBDDD programs has contributed to a 26-36% decline in neural tube defects, as well as significant advances in the identification of preventable risk factors for birth defects and improved screenings.

As for ADHD, since the NRC opened its doors in 2003, trained health information specialists have responded to over 27,000 individuals seeking information, guidance, or sometimes just a listening ear. And then there are the millions of visits to the NRC web site; the special projects reaching out to African Americans and Spanish speaking persons; the monthly Ask the Expert chats; the newsletters; the information sheets… the list goes on!

Business in Washington, DC, is and always has been centered on party politics. My call for action to maintain the current structure and funding of the NCBDDD, its disability divisions, and especially funding for the NRC, has nothing to do with whether we are Republicans, Democrats, Independents, or however we may classify ourselves. It has everything to do with the lives of our children, our friends, ourselves. It is about our future and those who will be born in the future and the quality of life future generations of people with ADHD or other disabilities will have.

We urge you to become involved and let your voices be heard. Help us to save not only the National Resource Center on ADHD but also the NCBDDD disability division.

Yes, these times are tough. But certainly no one—not the President, not Republicans or Democrats nor leaders in either the House or the Senate—wants to be known as the ones who undid a decade of work done through CDC that positively impacted the lives of people with ADHD and other disabilities.

How You Can Help

In the coming days, while Congress is in recess and our senators and representatives are in their home states and districts, we will be asking you to contact these elected officials and let your voice be heard. CHADD will provide you with the facts on the accomplishments of the NRC and NCBDDD.

We will post sample letters for you to assist in communicating with your representatives. We will give you tips on how to tell your story—because nothing has an impact like the power of a personal story! We will ask you to make sure that your elected officials know how important it was—and is—to have access to solid, science-based information that has the ability to change lives and help people with ADHD reach their full potential.

Congress must hear these stories—by the thousands—if we are to continue to make progress.

Thank you… and stay tuned!

Mary Durheim

Mary Durheim is a past president of CHADD and one of the founders of CHADD’s Parent to Parent program. An educational consultant, she is active in numerous county and state interagency organizations as a trained mediator, Section 504 hearing officer, and behavior strategist. Durheim is the mother of two adult children with ADHD.

Don't Miss NOW WHAT?! This Sunday!

2011-06-09T11:56:00.000-05:00

This week's guest blog is by Marie S. Paxson.

“Overture, curtains, lights... this is it, the night of nights!” Now What?! is Sunday!

Let me apologize in advance for being a shill for the new production of Now What?! Two performances of this show about adult ADHD will be held at the Clarice Smith Performing Arts Center this Sunday. While the name of the show may seem odd, for those with a recent diagnosis of ADHD it sums up what’s likely been going through their minds…now what?

The show is a must-see for anyone who has been diagnosed with ADHD and could use some good information about dealing with the disorder and what treatments and options exist. In fact, if you are close to someone that you think has the disorder, my suggestion is get tickets and go see this show! Oh and the best part? Rick Green and Patrick McKenna, two stars of Canadian television and PBS, make this show hugely funny with their comedy bits and sketches. It’s just good medicine for those affected by ADHD, plain and simple!

If you’ve ever seen the PBS documentary about ADHD called ADD & Loving It?! then you know the talents of these two men. They’re joined by Dr. Umesh Jain (Dr. J) an expert in ADHD, who plays the straight man to the comic antics of Rick and Patrick. But there’s more to this show than fun and games. There’s a lot of good information delivered in the form of an engaging stage production. The actors even bring members out of the audience to play “roles” in the show. The purpose of the show is to dispel the myths and rumors about ADHD and to let people with ADHD know that a diagnosis is not a death sentence. Many, many people diagnosed with ADHD are hugely successful actors, authors, doctors, athletes, and politicians.

Many people feel that ADD & Loving It?! has taken a lot of the blame and shame out of having adult ADHD. It would be good for recently diagnosed adults, as well as those struggling to accept that their lives will be different than they expected. Public television stations across the country have run the documentary ADD & Loving It?! and it was featured on the most recent cover of Attention magazine.

In Now What?! Rick, Patrick and Dr. J discuss ways to manage money, improve organizational skills, and provide advice on what to say to those who feel that people with ADHD are daydreamers and lazy. And while there’s nothing funny about ADHD, the actors provide poignant dialogue about the foibles of this misunderstood disorder. Interestingly enough, when Rick approached Dr. J with the idea of creating a humorous documentary about ADHD, he was met with incredulity. A show that makes fun of a mental disorder… Is nothing sacred? Well, my friends, the old adage is you can catch more flies with honey than with vinegar and this production is sweet honey!

I hope you’ll take my advice and see this show.

Now What?! is scheduled for two performances (1:00 and 6:30 pm) at the University of Maryland’s Clarice Smith Performing Arts Center, Dekelboum Concert Hall on the College Park, Maryland campus this Sunday, June 12.

TICKETS ARE NOW AVAILABLE AT DISCOUNTED PRICES WITH SPECIAL PROMO CODES! For information visit the CHADD website or contact CHADD directly at 301—306-7070 x118. For online ticket orders click here. Adults can purchase tickets with the promo code SPECIAL at $24.50, and students may use the promo code STUDENTSPECIAL to purchase tickets at $10.00 each. Tickets may also be purchased at the box office.

Marie S. Paxson is the immediate past president of CHADD.

The Geniuses Behind NOW WHAT?!

2011-06-03T13:09:00.000-05:00

This week's guest blog is by Barbara Hawkins.

I am so looking forward to seeing the new stage production about adult ADHD called Now What?! with Rick Green and Patrick McKenna. These two popular Canadian actors/comedians have created a new show to dispel the myths and misinformation about adult ADHD. No small accomplishment if it works.

I’ve enjoyed watching McKenna and Green in ADD & Loving It?! on PBS more than once. The popular documentary has likely done more for people affected by ADHD and their families than a lot of other “treatments.” What I am really excited about, however, is that this new show is a stage production, not a documentary. That means live on-stage performances that include skits and interactive exercises in which the audience actually gets to participate. It’s kind of like an entertaining therapy session with no doctor’s bill afterward!

Rick and Patrick have themselves long been diagnosed with ADHD. That’s the reason why their production should be something special, because everything in the show is influenced by their personal experiences. They are joined onstage by Dr. Umesh Jain, or Dr. J as he is known, internationally recognized in the field of ADHD.

Dr. J can boast some major career accomplishments, with over 50 peer reviewed papers and book chapters, 90 peer-reviewed posters, invited lectures and workshops and over 300 presentations. He’s the perfect straight man to the comic characters portrayed by McKenna and Green. Dr. J has joined with Rick on TotallyADD.com in an effort to take ADHD into the mainstream and get people talking about ADHD with facts and certainty rather than drama, fear, and misinformation.

Rick Green has made hundreds of innovative television, radio, and stage shows including History Bites, The Red Green Show, Prisoners of Gravity and The Frantics. I think his greatest roles are the ones he plays in ADD & Loving It?! and in the Now What?! production.

To quote Rick, “Everything I used to know about ADD was wrong. Getting a proper diagnosis and treatment was transformational; like losing 400 pounds, only from the mind rather than the body. I was more productive with far less wear and tear on my soul. Everyone deserves to have this feeling of being in charge of their lives, rather than being a confused victim of mysterious whims. It’s possible.”

For a long time Rick managed his ADD in an “ADD kind of way”—sporadically and only when it reached a crisis. God bless television deadlines. The more roles Rick took on (producer, director, actor, writer, teacher, and father), the more he took on his ADD—and the more surprised he was at the amount of stigma, misinformation, and vitriolic opinion masquerading as fact. Knowing the power that understanding makes in addressing this syndrome, Rick created ADD and Loving It?!

While it may seem odd for a comedian to be doing something quasi-educational, Rick actually has a Bachelor of Science Degree in Physics, which he barely earned in his three years at the University of Waterloo. (That didn’t stop the university from naming Rick one of their Top 50 Graduates of the First 50 Years!) Rick’s first job was teaching at the Ontario Science Centre where he ran demonstrations, wrote and produced science-themed plays, developed exhibits, and set his hand on fire with a 40-foot-long, 1000 watt laser. OMG!

What about Patrick McKenna? He spent most of his life trying to hide what he suspected was ADHD. As a child, he was chastised for doing badly at school and didn't feel very good about himself.

Still, he is one of the fortunate ones who came through the tough times. Today, Patrick has a very happy, successful life—his career as an actor and comedian feeds into his ADHD-fueled needs. To quote Patrick, “I always craved something new and exciting, and all the scripts, characters I played, and bright lights fulfilled that desire.”

Now What?! is scheduled for two performances (1:00 and 6:30 pm) at the University of Maryland’s Clarice Smith Performing Arts Center, Dekelboum Concert Hall on the College Park, Maryland campus on June 12. For information visit the CHADD website and for ticket ordering, click here.

Barbara Hawkins, president-elect of CHADD, is the former coordinator of CHADD of Greater Baltimore and a recipient of the CHADD Volunteer of the Year Award. Hawkins is assistant dean of Villa Julie College in Stevenson, Maryland, and chair of the Children’s Mental Health Conference in Baltimore.

Now What?! Join Us on June 12!

2011-05-26T12:39:00.007-05:00

This week's guest blog is by Steven Peer.

I always take an interest in new efforts that focus on ADHD education and information, especially when those efforts are fun, creative, and innovative. The new stage show about adult ADHD called Now What?! is one of those efforts. And it is coming to the Clarice Smith Center for the Performing Arts at the University of Maryland.

Rick Green and Patrick McKenna, the creators of ADD & Loving It?!—the popular documentary that has aired on PBS around the country—along with ADHD expert Dr. Umesh Jain (Dr. J.), have created this new stage production to help dispel the myths and misinformation about adult ADHD. They have made the process fun and engaging. This unique show was created for people with adult ADHD and for those who suspect they may have adult ADHD or who know someone with adult ADHD symptoms.

Now What?! is not a Broadway production or a long-winded dissertation about ADHD. It is a stage production the promoters call “edutainment.” As far as I know, nothing like this about ADHD has ever been done before!

If you’re familiar with the ADD & Loving It?! performances by McKenna and Green (both of whom have ADHD), Patrick gets his own ADHD diagnosis and learns from top experts about adult ADHD. The groundbreaking documentary is a blend of humor, hope, and science that educates while being entertaining, ergo edutainment. Now What?! does the same, but is a stage production that engages the audience in ways the film production doesn’t. It goes to the next level and takes the audience on a hilarious and transformative journey combining humor, drama, first-person stories, and interactive exercises.

Dr. J. and Rick Green created this funny, lively audience experience to help adults recognize the symptoms of ADHD, understand the process for a proper diagnosis, and become familiar with the various treatment options. The primary message of Now What?! is that much can be done in treatment and that diagnosis should not lead to fear, but hope!

In Now What?! Rick, Patrick and Dr. J. explore everything from careers and finances to relationships and parenting; from the history of ADHD to coping tools and strategies. “I’m the free form, free thinking out-of-the-box kinda guy,” McKenna says to Dr. J. in a hilarious skit called “The Therapy Session,” in which Patrick plays an adult with undiagnosed adult ADHD coming to see Dr. J. As the patient, Patrick inadvertently displays the most common adult impairments. “Where do you work, by the way?” asks Dr. J. “On an assembly line… making gas pedals for Toyota,” responds McKenna. And it goes on from there… hilarious at times, intense and enlightening at others.

“I’m not here to make you normal, I’m here to make you functional. Mediocrity is overrated,” Dr. J says in one of the show’s interactive audience Q&A sessions. The audience gets into the act a lot during the show. “Relationship Issues—Opposites Attract,” “Are You Smarter than an ADDer?” and “Embracing the Diagnosis” are a few of the other funny and informative elements in the production.

There's something about Canada that breeds great comedians. Rick Green and Patrick McKenna join the ranks of Jim Carrey, Mike Myers, Phil Hartman, Seth Rogen, Catherine O’Hara, Eugene Levy, and John Candy.

These two world-class Canadian comedians talk about their experiences and relate how they initially resisted their diagnosis, then discovered the facts, and the resulting rollercoaster of emotions from anger to joy to sadness to relief. Rick and Patrick talk about the difference knowing that they have ADHD has made in their lives. Despite all their career successes, according to McKenna and Green, life was much improved once they learned about ADHD and more importantly, that it was not the end of the world—more like a new beginning.

The initial Canadian performance was sold out and I expect the upcoming event at the University of Maryland will sell out, too. If you’re in the DC area on June 12 I recommend you take time and see this production, for yourself and for your loved ones.

Now What?! is scheduled for two performances (1:00 and 6:30 pm) at the University of Maryland’s Clarice Smith Performing Arts Center, Dekelboum Concert Hall on the College Park, Maryland campus on June 12.

For information visit the CHADD website and for ticket ordering, click here.

Steven Peer is the president of CHADD.

The Secrets of Power Advocacy

2011-05-10T09:26:00.001-05:00

Today’s guest blogger is Lisa LaVardera, Esq.

If you have a family member with ADHD and you are looking to cut through the information/advice clutter, then One Day, One Location, Many Solutions to ADHD and Co-Occurring Conditions is the place to go! By the end of the day, you will have a clear understanding of ADHD...and more importantly, you will have strategies to manage it.

ADHD is a lifespan disorder, and often comes with multiple coexisting conditions. If you are new to the world of ADHD, or continuing on your journey, you will find many interesting breakouts at this conference, from understanding twice exceptional kids, to special education law, to bullying, to how to transition your child to college, to women’s relationship issues and how to keep your marriage alive with ADHD. Plus, the keynote speaker is the one and only Chris Dendy, author of multiple books on ADHD and executive functioning deficits. Like to eat? This conference comes with lunch!

Do you have a child with special needs whose needs are not being met in school? Would you like to learn more about how to become a powerful advocate for your child? Separate myth from fact! Find out how recent changes in the law can help your child with ADHD. I will tell you what the school districts do not want you to know. Learn the secrets of Power Advocacy!

DID YOU KNOW:
• Children whose parents are knowledgeable about ADHD and know how to advocate have better long-term outcomes.
• Recent changes to the law now make more children eligible to receive special education accommodations and services.
• Your child can receive services and accommodations in school even if he is doing okay academically.
• A school psychologist might not diagnose your child’s disability.
• Why you need to get an independent outside evaluation.
• New York State has a new IEP format that is both good and bad for our kids.

In my session, we will cover the basics of the special education process; why you should have an outside medical evaluation; and what the recent changes to Section 504 may mean for your child.

Come to Long Island on Saturday, May 14, for CHADD's NY Regional Conference on ADHD and be sure to register for Power Advocacy!

Attorney Lisa LaVardera, a Certified Parent to Parent trainer, serves as coordinator of CHADD of Suffolk County, NY, a CHADD Affiliate of the Year recipient. She has received the Long Island Speech and Hearing Parent of the Year Award and the Nassau Region PTA Advocate in Action Award.

Why Do Executive Function Deficits Matter?

2011-04-27T09:10:00.001-05:00

Chris Zeigler Dendy is this week’s guest blogger.

Executive function is a term parents and professionals have been hearing more and more often in recent years. If you’re wondering why executive functions are so important, you don’t want to miss my keynote address at the CHADD regional conference in Long Island on May 14. My presentation entitled Executive Function: Why Does It Matter? will explain what a profound impact these functions have on school performance and everyday life.

I first heard of executive function deficits in a presentation by Russell Barkley some fifteen years ago. I was stunned; everything he said described our son to a “T.” Ultimately I realized, that the deficits in executive functions were the primary reasons for our son’s school struggles, even more so that the ADHD symptoms themselves. Barkley had just provided the missing piece of the puzzle for me—the reason why our gifted son was failing four of six classes as a freshman in high school.

You probably don’t realize it, but you already know what executive functions are, it’s just that you may never have heard the term before. If your child has trouble getting started and finishing work, memorizing facts such as multiplication tables, is often late, forgets books and assignments, loses things, is disorganized and has a messy room, backpack and locker, then you’ve been dealing unknowingly with deficits in executive functions for several years.

I do hope you’ll join us on May 14. Not only will I identify key executive function deficits, but I’ll also suggest specific strategies to address these deficits. After my presentation, I’ll be available to autograph the second edition of my brand new book, Teaching Teens with ADD, ADHD, and Executive Function Deficits.

I look forward to seeing you soon.

Chris Zeigler Dendy

Chris Zeigler Dendy, MS, is co-producer of a new DVD, Real Life ADHD! featuring thirty teens who are affected by ADHD.

I Love a Good Conference!

2011-04-20T14:03:00.000-05:00

Ari Tuckman is this week's guest blogger.

I love my family and I love my job, but I really love getting away from everything for a good conference. So I'm really excited about the upcoming CHADD regional conference on May 14th on Long Island.

I love to hear what other experts in the field are saying about ADHD. I love to run into old friends (my wife calls them my "CHADD buddies"). And I love meeting new people (future CHADD buddies).

I also love presenting, and I am really looking forward to doing the Lunch and Learn at this year's conference. I will be talking about the important but often overlooked topic of acceptance. I am a firm believer in the value of good strategies to help people perform better in their lives so they can feel better about themselves and take on greater challenges. But what do you do when certain struggles remain? Hopefully you have made at least some progress, but perfection is hard to come by.

I will talk about how to feel good about yourself or others by letting go of unfulfilled expectations. This isn't giving up—it's making a conscious and intentional choice to move on. My guiding philosophy is "change what you can, accept the rest." The other presenters will talk about ways to change things in your life. I will talk about how to feel happy even when some things don't change. When you put the two together, life is much better.

Ari Tuckman

A clinical psychologist based in West Chester, Pennsylvania, Ari Tuckman, PsyD, MBA, is the author of More Attention, Less Deficit: Success Strategies for Adults with ADHD and Integrative Treatment for Adult ADHD.

Take a Chance on Tomorrow

2011-04-14T13:29:00.000-05:00

Steven Peer is today’s guest blogger.

If you had a chance to make each tomorrow better, simpler, and more understandable for you and the ones most important in your life, would you take it?

Whether you are a psychologist, mental health professional, parent, caregiver, or educator, embrace this opportunity on May 14, 2011 to make such a difference at the CHADD regional conference in Long Island, New York.

Attendees will choose from 22 breakout sessions and a keynote by Chris Zeigler Dendy, MS. And they will hear from top experts on current topics of executive function, alternative treatments, ADHD and co-occurring disorders in the classroom, practical answers for home, school, and workplace, and more.

Here are some comments from attendees at one of CHADD's past regional conferences:

"The different presenters were extremely diverse and were experienced. It was a pleasure to have them and listen to these experiences."
- Parent, 2009 Regional Conference

"... can apply many of these strategies/suggestions in my classroom."
- Educator, 2009 Regional Conference

There are many ways to learn. I prefer face-to-face conferences best. Here are a few of my reasons why.

1. Ask anyone who's attended a conference. The joy, the fun, and the connecting at a conference come from what happens before, during, and after sessions.

2. Teleconference attendees learn only what is directed at them. There's no overhearing of questions and comments; there's no body language; no inference; no bumping into world-class presenters in the hallway. There's nothing like face-to-face, live learning.

3. Checking-OUT of your routine and INTO a conference changes everything. No crying, barking, or other distractions. Many folks with ADHD learn best in this immersion-style setting.

4. Ask the presenters at a teleconference what they prefer—it's as awkward for them as it is for you.

5. What no teleconference operator can claim is CHADD's 23-year history of local and international, life-changing events. You owe it to yourself to find out for yourself.

Learn more about this exciting event and join me on Long Island on May 14th.

Steven Peer

P.S. If you belong to any national professional organizations (NASSP, COPAA, APA, NAPO, etc.) please spread the word about this conference on their member listservs, message boards, or forums.

Steven Peer is the president of CHADD.

Shortages of ADHD Medications

2011-04-13T13:43:00.000-05:00

Timothy MacGeorge, MDiv, MSW, is this week’s guest blogger.

Are you experiencing difficulty in getting prescriptions filled for ADHD medications such as Adderall, Metadate, or their generic forms?

Earlier this week, the U.S. Food and Drug Administration (FDA) added two major ADHD medications to its list of Current Drug Shortages. These shortages, which are apparently not widespread and seem to be sporadic throughout the country, are due to shortages in the “active pharmaceutical ingredient” (API) used to make brand medications such as Adderall XR, generically an Amphetamine Mixed Salt, and Metadate, a brand version of the generic Methylphenidate. It is expected that these shortages, which are the result of quotas imposed by the U.S. Drug Enforcement Administration (DEA) on the manufacturers, should be resolved within the next six to eight weeks.

What to do? If you experience difficulty in filling an ADHD prescription due to this shortage, here’s what you can do:
• Ask your pharmacist if the medication is available from another location, especially if you use a large chain pharmacy.
• Contact the manufacturer to help locate a pharmacy that has your medication in stock (see the customer service numbers below).
• Contact the doctor who prescribed the medication to see if he/she has any samples you can use.
• Ask your pharmacist about the availability of other medications used to treat ADHD.
• As a last resort, discuss with your prescribing physician whether or not any of these available medications might be appropriate for you or your child.

Finally, if you’ve exhausted all avenues and still can’t get a prescription filled due to a medication shortage:
1. Tell the FDA: Send an email to drugshortages@fda.hhs.gov or call 888-INFOFDA or 888-463-6332.
2. Tell CHADD: 800-233-4050.

Not sure which company makes your medication? Check the prescription label or ask your pharmacist.

Pharmaceutical companies that produce Amphetamine Mixed Salts ER Capsules:
• Shire Customer Service Number: 800-828-2088 (select “Option 5” for assistance in locating a pharmacy in your area with product availability)
• Teva Customer Service: 888-838-2872
• Global Customer Service: 215-558-4300

Pharmaceutical companies that produce Methylphenidate HCL:
• UCB Customer Service: 800-477-7877
• Covidien Customer Service: 800-325-8888
• Sandoz Customer Service: 609-627-8500
• Watson Customer Service: 973-355-8300

Timothy MacGeorge, MDiv, MSW, is the director of the National Resource Center on ADHD: A Program of CHADD that is funded by the Centers for Disease Control and Prevention (CDC).

What Do I Do When Nothing Is Working?

2011-04-06T14:38:00.005-05:00

This week's guest blog is by Marie S. Paxson.

If you have a family member with ADHD and you are looking to cut through the clutter of information and advice, then One Day, One Location, Many Solutions to ADHD and Co-Occurring Conditions, a conference sponsored by CHADD, is the place to go! By the end of the day, you will have a clear understanding of ADHD. And, more importantly, you will have strategies to manage it.

I will be presenting a program entitled What Do I Do When Nothing is Working? When Someone You Care About Is Struggling with Risky Behaviors. I would love to tell you that I learned this information from a book, but I am probably a lot like you. As the parent of two children (now young adults) with ADHD and co-occurring conditions, I've been witness to some of the negative aspects of ADHD. I've been on the receiving end of some really upsetting phone calls. ADHD doesn't just affect academic performance, and the consequences of "ready, fire, aim" can be very serious.

This session will be more than just a recounting of my family's story (let's face it, we could all do that). It will include the valuable lessons I learned along the way. And time will be allotted for audience members to share their insights on how they are managing the troubling side of ADHD.

If this topic doesn't speak to you, the conference will offer a myriad of other ADHD-related presentations. The planning committee worked very hard to provide a wide selection of topics to help you manage ADHD on a daily basis. I hope to see you in Long Island on May 14!

Marie Paxson,
Immediate Past President, CHADD

Artificial Food Dyes and ADHD

2011-04-01T12:45:00.010-05:00

This week's news is all about food dyes and ADHD. For more than 30 years there has been concern about synthetic food dyes and ADHD (think Feingold diet) and a fair amount of research has been done to investigate this connection. The conclusion of the scientific community has been that artificial food dyes are not a major factor in ADHD. But a small subset of people diagnosed with ADHD who also have food hypersensitivities may see symptom improvement when the food dyes or the offending foods are eliminated.

Over the last several days, the US Food and Drug Administration convened a meeting to examine the scientific evidence on artificial food dyes and make recommendations in response to a petition from the Center for Science in the Public Interest, a food advocacy group opposed to the use of artificial food dyes in the food supply chain. One of the major questions before the FDA’s Food Advisory Committee was the effect of food dyes on all children, not just those with ADHD. This is the distinction many journalists missed in reporting on the meeting. I listened to the presentations by a number of scientists, including Dr. Gene Arnold (CHADD’s representative), and I want to share the discussion and conclusions of the FDA committee with our members.

The body of research to date, which has confusing and mixed results, suggests there may be a low-level, short-term effect on behavior for children in general. But both the severity and the chronicity of the symptoms of inattention, hyperactivity, and impulsivity needed for a diagnosis of ADHD are of a much higher magnitude than demonstrated in these studies. In addition, food dyes may lead to some mild increase in the level of symptoms for children who are diagnosed with ADHD.

An important change that led to this week's hearing was a study published in 2007 in the British journal The Lancet looking at the effect of two mixtures of food dyes on children who were NOT diagnosed with ADHD. The investigators, from the University of Southampton (UK), found a small increase in activity levels and inattention by parent report. The changes were short-term in nature and would not lead to a diagnosis of ADHD. When increases in hyperactivity are reported in the media, they are referring to the activity changes reported in this study and not the symptoms of ADHD.

The Southampton study did raise many questions about the safety of food dyes on all children. As a result the European Union made the policy decision to add a label to foods containing artificial food dyes, warning that this food "...may have an adverse effect on activity and attention in children." Although many food manufacturers in Britain and throughout Europe eliminated artificial food dyes rather than add the warning labels, the UK did not ban the use of these dyes, as some media have incorrectly reported.

At the end of the two-day meeting, the FDA’s Food Advisory Committee voted to take no action on our current use of food dyes. Concern was expressed that there are many unresolved questions about the studies done to date and many design concerns. For instance, the Southampton study included a preservative in both mixes in addition to the dyes, and this could account for the results. The behavior changes were only noticed by parents and not consistently picked up by teachers, clinicians, or performance scores on an objective test of attention. The Food Advisory Committee concluded, by a vote of 79% of its members, that the research to date is inadequate to conclude that food dyes have an adverse effect on children’s behavior.

Concern was also expressed about the public health impact of waiting for better-designed studies and a larger body of research. Given the finding in some studies that both attention and activity levels in children are affected by artificial food dyes, should the FDA be more proactive than the scientific evidence suggests? There was much discussion about warning labels or other methods to inform parents that there is some indication that artificial food dyes might have a mildly negative effect on attention and activity levels. But in the end, 57% of the committee members voted no action should be recommended because the scientific evidence is so muddled.

The FDA committee members were also asked to consider the prevailing guidance on food dyes and the impact on children diagnosed with ADHD. The committee voted no change by 93%, and were clear in the discussion that no new evidence had been presented that indicated any consistent connection between food dyes and ADHD. Current clinical guidance suggests that elimination of food dyes should not be considered a mainstream intervention, but should be considered if there is a history of food sensitivities or if parents notice a behavior change after ingesting certain foods.

And the FDA committee members agreed, by a vote of 93%, that more studies are needed to clarify these issues.

So what is the takeaway message for families coping with ADHD?

• A small number of kids who appear to be hypersensitive to foods and who are diagnosed with ADHD may respond well to a diet eliminating food dyes or other irritating foods.
• If your child's behavior or inattention gets worse after eating foods with artificial food dyes, then consider avoiding them. This will probably not make the symptoms of ADHD disappear, but it may reduce the severity.
• A healthy diet is important for all children, but especially for children with ADHD.
• If there does not seem to be an effect from eliminating foods with dyes and/or if avoiding food dyes is too expensive, too difficult, or creates too much tension in your relationship with your child, then this may not be a change that is important in your child’s overall treatment.
• About 80% of all ADHD appears to be related to genetics. It is inherited. Other things happening in the environment may make the symptoms worse (no treatment, family stress, poor diet) and other factors may help to reduce the symptoms (good parenting, multimodal treatment, healthy diet). Our job as parents is to provide the best treatment and supportive environment for our children that we reasonably can.
• If you are an adult with ADHD, there is no research available on the effect of food dyes in adults. Your best bet is to assume the effects may be similar, though we are not clear on what those effects are. How’s that for clarity!

CHADD’s job is to make sure you have the best information available so that you can make informed decisions about treatment and management of ADHD.

Ruth Hughes, PhD
CHADD Interim CEO

If you would like more information on alternative treatments, the FDA hearing, artificial food dyes, or elimination diets, check out the following resources:

CHADD’s NRC What We Know #6: Complementary and Alternative Treatments for ADHD

Background Information on the FDA Hearing

Southampton Study

Food Dyes and ADHD

Elimination Diets

You're Not Alone!

2011-03-31T10:43:00.006-05:00

This week's guest blogger is Barbara Hawkins.

At last someone understands.

There is nothing quite like a CHADD conference! My first one was years ago, and I will never forget the sense that, at last, some one understands.

It is hard to describe how much it means to find people who really do understand what it means to be a parent to a child with ADHD, a child whose behavior you do not understand, a child whose behavior you sometimes cannot control. It is not easy to describe the relief you feel knowing that you are not alone. It is not you. It’s the ADHD and CHADD can help.

Many of us have children who do not have ADHD, and we do not understand why the next child does not react the same way to our parenting techniques. I know it is hard and I know that CHADD can help. Support and understanding cannot be understated. Techniques to deal with ADHD issues are invaluable. Join us on Long Island on May 14 for valuable tips and understanding.

Barbara Hawkins

Barbara Hawkins, president-elect of CHADD, is the former coordinator of CHADD of Greater Baltimore and a recipient of the CHADD Volunteer of the Year Award. Hawkins is assistant dean of Villa Julie College in Stevenson, Maryland, and chair of the Children’s Mental Health Conference in Baltimore.

Elimination Diets for ADHD Not Ready for Primetime

2011-03-17T14:12:00.001-05:00

The news has been full of reports of the INCA study, including the following conclusion on National Public Radio from the lead author, Lidy Pelsser, MSc: “64 percent of children diagnosed with ADHD are actually experiencing a hypersensitivity to food.” CHADD experts have looked at the study published in The Lancet. Without a great deal more research that supports the findings of this study, we would urge people to slow down and not jump to trying an elimination diet.

The families in the study were either put on a rigorous and closely supervised elimination diet or assigned to a control group that received instructions for a healthy diet. An alternative explanation for the results could easily be that the children in the experimental group responded well to a highly structured environment and lots of attention—both necessary for an elimination diet—and not the diet itself. Another explanation is the all-powerful placebo effect.

While this was a randomized study, the participants all knew which group they were in. This lack of blind experimental and control groups is a major research design flaw. The placebo effect is usually controlled by making sure all participants are blind to the intervention they are receiving. For instance, an experimental group might get the elimination diet and the control group might get a bogus elimination diet which eliminates only foods unlikely to make a difference. Then the children in both groups would receive the same amounts of structure and adult involvement. That did not happen in this study. Conclusions about hypersensitivity to food and ADHD cannot be made on the face of this single study, and certainly not when the groups were aware of the interventions.

Years of research on diet and ADHD have concluded that a very small percentage of children with ADHD who also have food hypersensitivities may do well with a controlled diet. So if you know or suspect your child has food hypersensitivities, then you may want to try an elimination diet with good medical supervision. But for the vast majority of people with ADHD, there is not yet evidence that this will make a difference.

Ruth Hughes, PhD
CHADD Interim CEO

Everyone Claims To Be An Expert On ADHD: Recognizing Bias

2010-11-02T14:54:00.008-05:00

This week's guest blogger is Michael J. Labellarte Sr., MD.

Bias can be an obstacle to getting appropriate help for a child with ADHD. My session at CHADD’s conference will focus on how to recognize and minimize bias among the various professionals and family members involved in the child’s life.

Psychiatrists often discuss bias in terms of research and statistics, in the attempt to protect the scientific integrity of research data from factors that can erode the accuracy of research findings. Psychiatrists rarely discuss bias in terms of factors that can erode accuracy of diagnosis.

With a disorder as controversial as ADHD, a discussion of bias as it pertains to professional educators and treatment personnel is a can of worms. However, a discussion of clinical bias regarding ADHD will help parents navigate a complicated system where everyone claims to be an expert, from grandparents to international scholars. The goal here is illuminate how a variety of individuals tend to think, feel, behave, and make decisions, the better to predict and avoid common mistakes.

As soon as parents, pundits, and ADHD “experts” try to judge someone else’s thoughts, beliefs, and behaviors, they risk the introduction of observer bias. The most important observer bias is called fundamental attribution error which helps drive the controversy around ADHD. Fundamental attribution error describes this observer attitude: that another person’s behavior reflects their character or personality and not their circumstances; whereas the observer’s behavior depends on circumstances and not character or personality.

This kind of bias is lethal to accurate diagnosis and management of ADHD (or any other psychiatric disorder) whether it comes from parents, educators, psychiatrists, or whomever. Bias opens the door to easy distortions (such as oversimplification or overgeneralization) and more destructive factors such as insufficient data, insufficient comprehension, misinterpretations, misattributions, desperation, misinformation, deception, and mistrust between professionals and patients and families.

My conference session will detail steps parents can take to minimize bias in all its various forms as an obstacle to getting appropriate help for their child, including:

1. Assemble an experienced team for short-term consultation and longer-term management.
2. Get the “lay of the land” by identifying all of the various professional and familial “stakeholders” involved in the child’s life.
3. Gather information systematically, through a variety of sources.
4. Focus the information in the medical model style: A consultation begins with a presenting problem, it does not begin with a conclusion to rule in or rule out a diagnosis.
5. Observe for evidence of professional bias, including shortcuts, forced conclusions, and clichés.
6. Demand enough feedback for informed consent before making a decision about treating or not treating ADHD, if it is present. True expertise will manifest during the informed consent process, which usually includes the rationale for diagnosis, a plan for further assessment, treatment options that include medical, psychological, and school-based interventions, the risks and benefits of treatment or withholding treatment, and the expected course of ADHD if treated or if not treated in your child.

I hope you will join me for this important discussion at the CHADD conference in Atlanta from November 11 through November 13.

Michael J. Labellarte Sr., MD, is a board-certified child and adolescent psychiatrist who treats children and families at his CPE Clinic, LLC, in Towson, Columbia, and Severna Park, Maryland, as well as Vero Beach, Florida. He is an assistant professor of psychiatry at the Johns Hopkins University School of Medicine, the University of Maryland School of Medicine, and the University of Florida College of Medicine.

Can School Be a Positive Turning Point for Children with ADHD?

2010-10-21T09:54:00.012-05:00

This week’s guest blogger is Mark Katz, PhD.

School can be a positive turning point in the lives of children with ADHD when we create a school culture that takes the danger out of learning differently. Schools can be places where successes far outweigh failures, where mistakes are seen as learning experiences—and where other children are quick to lend a helping hand, rather than a cruel remark.

One institute at the CHADD conference in Atlanta will share the ways some schools are successfully accomplishing this goal. The panel will discuss the specific practices these schools rely upon as well as how attendees can implement these practices in their local schools and after-school programs.

Joining me on this panel will be Marlene Snyder, PhD, a professor at Clemson University who is the national training director for the Olweus Bullying Prevention Program and the founding president of the International Bullying Prevention Association. Our third panelist, Jeffrey Sprague, PhD, is a professor of special education and director of the University of Oregon Institute on Violence and Destructive Behavior.

We’ll also be talking about proven practices for preventing and reducing bullying at school. The national news media recently reported upon a series of tragic events where children and teens have actually taken their lives as a result of bullying. Many people are just now realizing how widespread bullying is, and how serious the consequences can be.

Some schools are intervening early in the lives of children with learning and behavioral challenges in ways that are preventing more serious problems down the road. We’re excited about these advances in the field of prevention and excited about having the opportunity to share them with attendees.

We’ve also set aside time to discuss how to prevent burnout and compassion fatigue among teachers, parents, and other caregivers. We’ll discuss helpful strategies that attendees can implement in their local schools and communities.

And we’ll learn how teachers, parents and others in a child’s circle of support are helping children with ADHD and other challenges find ways to view these challenges in a hopeful new light. We know from the research on resilience how important this is, and we’ll be discussing programs, practices, and resources that can help.

We hope you can join us in Atlanta.

A clinical and consulting psychologist, Mark Katz is the director of Learning Development Services, an educational, psychological, and neuropsychological center located in San Diego. He is a contributing editor to Attention magazine and a member of its editorial advisory board, a former member of CHADD’s professional advisory board, and a recipient of the CHADD Hall of Fame Award.

What's So Great About ADHD Coaching?

2010-10-14T16:08:00.004-05:00

Jodi Sleeper-Triplett, MCC, SCAC, returns as our guest blogger this week.

In my last post, I shared a few coaching tips for families with ADHD. But many of you might still be wondering—what’s so great about ADHD coaching?

ADHD coaching consists of a collaboration between client and coach to help the client move forward with his or her agenda, whether it be general (e.g., feel more satisfied with life, fit in better at school, enjoy work more, experience less daily stress) or specific (e.g., find more time for family, earn a job promotion, get accepted into college, or develop a healthy lifestyle). Coaching involves a free-flowing, creative process driven by the client and supported by the coach.

The coaching process offers a useful time and space for brainstorming options, exploring next steps, and engaging in simple coaching exercises to help the client and client family become more confident and motivated to achieve goals. In addition, coaching may involve accountability check-ins that provide the client with an opportunity to receive support, report progress, and share successes along the way. The sum of the experience for the client is a supportive environment in which he or she can explore new options and have a partner on the journey toward developing the life he or she wants. Ultimately, a trained coach will use his or her skill to evoke thought in the client and encourage the client to identify goals, as well as the actions that need to be taken to reach those goals.

Ready to learn more about coaching? Attend the information-packed preconference session, The Positive Impact of Coaching on Family Dynamics. Join us in Atlanta for CHADD’s annual international conference on ADHD from November 11 to 13!

Considered the founder of the movement for ADHD coaching for youth, Jodi Sleeper-Triplett is the cofounder of the Institute for the Advancement of ADHD Coaching and the director of coach training for the Edge Foundation.

All Roads Lead to Atlanta

2010-10-07T11:05:00.006-05:00

This week’s guest blogger is Rick Lavoie, MA, MEd.

The child with attention deficit disorder faces challenges in all aspects of life. This puzzling condition serves to complicate and compromise the child’s social, academic, and emotional development.

Teachers and professionals must be aware of the pervasive nature of ADHD and be willing to make accommodations and modifications in all activities and areas. ADHD is not simply a “school problem.” It impacts the child’s ability to function at home and in the community as well.

There is currently a virtual explosion of ADHD research being conducted throughout the world. Much of this research is poorly done and biased and is not valuable to parents and teachers who serve these students. However, there is also some research that can make significant, positive change in our schools and households.

So where does a concerned parent or professional get current information on the care and education of students with ADHD? All roads lead to Atlanta.

I am looking so forward to delivering a keynote address at the annual CHADD conference in Atlanta on Friday, November 12, 2010. This conference is widely recognized as one of the most effective and valuable meetings in our field. It provides an opportunity for you to meet with colleagues from all over the world and learn from some of the most accomplished speakers in education. Personally, I find that I learn as much as I teach at CHADD conferences.

See you there.

With every good wish,
Rick Lavoie

Rick Lavoie, MA, MEd, served as an administrator of residential programs for children with special needs for 30 years. He holds three degrees in special education and two honorary doctorates, and has served as a visiting lecturer at numerous universities. His numerous national television appearances include the Today Show, CBS Morning Show, Good Morning America, ABC Evening News, and Walt Disney Presents.

Coaching and Family Dynamics

2010-09-30T12:40:00.005-05:00

This week's guest blogger is Jodi Sleeper-Triplett, MCC, SCAC.

How can coaching help the dynamics of families with ADHD?

ADHD impacts all family members and family dynamics can get complicated. The coaching process helps families improve communication, learn time management and organizational strategies, find new ways to stay connected, and much more! Here are some tips for improving family dynamics:

• Make all family members accountable for household tasks. If everyone pitches in the work gets done faster. Decide in advance how the tasks will be divided and post a schedule where everyone can see it to avoid last minute “must-do” tasks.

• Reduce morning chaos by getting everything "ready to go" for work and school the previous night. This includes selecting clothing, setting out homework, book bags, projects, briefcases and preparing lunches.

• Parents—be curious and ask open-ended questions. Instead of “How was school?” ask “What did you do in school today?” to elicit conversation with your children.

• Hold weekly family meetings to review the past week and plan ahead.

Does this sound valuable for you and your family? Join Nancy Ratey and me for an interactive, thought-provoking preconference session on The Positive Impact of Coaching on Family Dynamics, at 1:30 PM on Thursday, November 11. Our session will be one of the dynamic preconference institutes offered by CHADD’s 22nd Annual International Conference on ADHD in Atlanta this year. See you there!

Considered the founder of the movement for ADHD coaching for youth, Jodi Sleeper-Triplett is the cofounder of the Institute for the Advancement of ADHD Coaching and the director of coach training for the Edge Foundation.

My Top Ten Reasons to Go Live

2010-09-23T10:28:00.007-05:00

This week's guest blogger is Steven Peer.

Every week I'm invited to 2-3 teleconferences or webinars on this or that. Most invitations come from people I've never heard of. If no live conference exists on the topic, I consider the teleconference. But I vastly prefer live conferences, especially CHADD's conferences on ADHD. Why? Here are my top ten reasons.

1. There is little or no barrier to creating a teleconference—anyone can claim to do them. But the truth is that there are thousands of details that only years of experience creating conference events can anticipate.

2. Ask anyone who's attended a live conference: The joy, the fun, and the tears come from what happens before, between, and after conference sessions.

3. Luddites are welcome at live conferences. Even computer pros can find teleconferences daunting.

4. As a teleconference learner, you learn only what is directed at you. There's no overhearing of questions and comments, there's no body language, no inference, no bumping into world-class presenters in the hallway. There's nothing like face-to-face learning.

5. Checking OUT of your routine and IN to a live conference changes everything. No crying, barking, or other distractions from the sessions. Many folks with ADHD learn best in an immersion setting.

6. Airfares and hotel rooms are a deal right now. And Atlanta is a great place to extend your stay for some much-needed R&R.

7. If you have the chance, ask a presenter what he or she thinks of presenting for a teleconference—it's as awkward for them as it is for you.

8. Quit saying 'no' to yourself. This conference was designed to make your life better.

9. If you can't live without technology, we will have all the sessions on MP3 or video for you—taped in front of a LIVE audience.

10. No teleconference operator can claim a 22-year history of international, life-changing events. But CHADD's annual international conference on ADHD can. You owe it to yourself to treat yourself to this conference.

I hope to see you there.

Steven Peer is the president of CHADD’s board of directors. CHADD's 22nd Annual International Conference on ADHD will be held in Atlanta, Georgia, from November 11 to 13. Learn more or register today.

Countdown to Atlanta

2010-09-16T11:56:00.005-05:00

This week's guest blogger is Sharon K. Weiss, MEd.

The CHADD conference is, for me, a labor of love. It is the quintessential opportunity to get together with friends and colleagues to learn so much information that I sometimes think my head will explode because my brain can’t hold it all. Every year I come home with copious notes, great ideas, and greater insight into the challenges of living with ADHD. I’m also anxious to pass along what I’ve learned, with a renewed sense of being able to make a real difference. It doesn’t get better than that.

The speakers and topics are so exciting that it’s always hard to know what to attend. Many of my colleagues and clients get in touch with me and ask who would be the best speaker to hear or which topic would best apply. Every year it’s a difficult call—and this year is no exception.

Flyers from many conferences cross my desk. But the CHADD conference is special. It is the chance to go to one city (and Atlanta is a great city with great food) and hear noted speakers who have the best information on the cutting-edge research and the evidence- based practices.

The latter is my area and I’m so honored to have been invited as a plenary speaker. For years, wherever I go people want to know what works—how to make behavioral change with those children whose behavior is a real challenge. In my talk, I’ll cite specific examples of behavior, discuss reasonable expectations for change, and outline the steps to making meaningful change in behavior. If you read my comments on this blog, please come up and introduce yourself!

Sharon K. Weiss, MEd, is a behavioral consultant in private practice who focuses on parent and professional training. She will present the closing keynote speech at the 22nd Annual International Conference on ADHD in Atlanta, November 11-13. Learn more or register today.

Preventing Obesity, Part Three: ADHD and Obesity

2010-07-28T15:55:00.008-05:00

My two earlier blogs on obesity generated lots of discussion on Facebook and throughout our chapter networks. One chapter leader shared an article by psychcentral.com blogger Zoe Kessler on the connection between undiagnosed and untreated ADHD as a “contributing factor in a significant number of cases of severe obesity,” especially in women.

Two professional journal articles addressing this subject can be found in the online library of the National Resource Center on ADHD, a program of CHADD supported by the Centers for Disease Control and Prevention.

1. Fleming, Levy, and Levitan in a March 2005 issue of Eating Weight Disorders reported that 26.7 percent of severely obese women and girls had significant ADHD.
2. Levy, Fleming, and Klar in the February 17, 2009 issue of the International Journal of Obesity reported significant co-occurring ADHD, obesity, sleep apnea, binge eating, and mood disorder. They recommend that individuals seeking medical or surgical weight loss have an ADHD assessment.

The science has not yet adequately researched and published these relationships. Zoe Kessler speculates that one contributing factor to the relationship between ADHD and obesity is the lack of self-regulation and impulse control in ADHD when related to diet and food consumption. Another contributing factor, Kessler thinks, is the possibility that people who are undiagnosed and untreated for their ADHD seek to increase their dopamine levels in an effort to self-medicate their ADHD. Again, we need much more science to answer the questions about the relationship between ADHD and obesity.

I will continue to blog on this topic.

Clarke

Preventing Obesity, Part Two: The Role of Physical Activity

2010-07-22T15:02:00.012-05:00

My previous blog described how my 19-year-old son gained 40 pounds during his first year out of high school, even though he was enrolled in a supervised post-high school program for young adults with learning differences. One reason for his weight gain was a significant decline in physical activity.

My son played organized basketball throughout most of his school years. At his high school, he played organized team sports—soccer, basketball, and softball—throughout the school year. Once out of high school, he was unable to locate an arena for team sports. Like many young adults with special needs, my son, when left on his own, tends to stay in his apartment playing electronic games and watching TV. His post-high school program did not deliver on its promises to facilitate group physical activity.

In June, the U.S. Government Accountability Office (GAO) reported that students with disabilities participate in athletics at consistently lower rates than students without disabilities. School officials across the nation indicated a lack of information on ways to expand athletic opportunities, a lack of clarity regarding schools’ responsibilities to provide such opportunities, and budget constraints. The GAO report is titled Students with Disabilities: More Information and Guidance Could Improve Opportunities in Physical Education and Athletics (GAO-10-519, June 23, 2010). GAO recommends that the U.S. Department of Education facilitate information sharing among states and schools in order to promote PE for students with disabilities.

Everyone needs regular physical activity. Our colleagues at the Centers for Disease Control and Prevention (CDC) fund the National Center on Physical Activity and Disability. NCPAD states: "Indoor or outdoor, recreational or competitive, solo or team, easy or intensive, NCAPD has the resources, contacts, and assistance you need." I have worked with the NCPAD executive director for several years, and he is passionate about helping people with disabilities to be physically active.

NCAPD’s slogan is “Exercise is for EVERY body.” There are substantial health benefits to be gained from participating in regular physical activity. The CDC recommends that we examine the National Physical Activity Plan, which was produced by a private-public sector collaboration to promote physical activity in American life.

This is the second in a series of CHADD CEO blogs on preventing obesity and the relationship between obesity and disability.

Clarke

Preventing Obesity

2010-07-16T15:44:00.005-05:00

My 19-year-old son came home from his first year in a structured post-high school program having gained 40 pounds. This was in a structured program, where once a week each apartment resident prepares a supervised dinner for his or her roommates—and where students participate in a wellness program. A 2008 National Center on Health Statistics report documented that among adults with a disability, 35.6 percent were obese, compared with 22.7 percent of adults without a disability.

Reducing and preventing obesity is a priority of First Lady Michelle Obama. On June 29, Trust for America's Health and the Robert Wood Johnson Foundation released their seventh annual obesity report, F as in Fat: How Obesity Threatens America's Future 2010.

CHADD is recognized and financed by the Centers for Disease Control and Prevention (CDC) to operate the National Resource Center on ADHD (NRC). Reducing and preventing obesity is a priority public health objective of the current CDC director. I will prepare my next several blogs on the connection between obesity and disability. One of the situations I will spend some time discussing is the relationship between consumption of unhealthy products and social isolation experienced by many people with ADHD and other disabilities.

At home this summer, my son has lost 13 pounds, participates in a regular exercise program with a trainer, and is practicing healthier eating. Whether these habits can be sustained when he returns to school in late August will be a challenge.

We all need to better focus on good health habits. Their relationship to ADHD and disability will be discussed in coming blogs.

Clarke

Young Adults Now Have Health Insurance Coverage

2010-06-08T10:52:00.003-05:00

The new health reform law (Public Law 111-148) requires that health insurance coverage be available until an individual reaches the age of 26. This provision is very important to young adults with disabilities, given the many transition challenges to meaningful work.

The legal effective date of this availability is September 23, 2010. Many health plans have already implemented the availability. The Department of Health and Human Services resource cited in this blog lists those health plans already implementing this availability.

The law allows young adults up to the age of 26, married or single, to enroll in their parents’ health plan. Beginning in 2014, all U.S. citizens and legal residents will be required to maintain minimum essential health insurance coverage. The parent enrollment option will cease in 2014. There is litigation challenging the legality of the “individual mandate.” For now, young adults can be covered under their parents’ plan.

Young adults between the ages of 19 and 29 represent one of the largest segments of the population that is currently uninsured. Approximately 13.7 million young adults were uninsured in 2008. Of these individuals, 52 percent of the uninsured ages 19 to 29 were under 133 percent of the federal poverty level. Many of these individuals will require premium subsidies, as authorized by the new law.

We recommend two particular resources providing detailed information on this topic:

HHS.gov factsheet:
Young Adults and the Affordable Care Act: Protecting Young Adults and Eliminating Burdens on Families and Business
Commonwealth Fund publication:
Rite of Passage? Why Young Adults Become Uninsured and How New Policy Can Help.

Clarke

Health Reform: Enactment Status of CHADD’s 13 Principles

2010-03-31T10:37:00.001-05:00

The Patient Protection and Affordable Care Act is now Public Law 111-148. The Health Care and Education Reconciliation Act (HR 4872) was signed into law on March 30. Through these two pieces of legislation, Congress and President Obama have succeeded in enacting comprehensive health reform.

On August 13, 2009, CHADD issued 13 principles to consider in health care reform. On October 15, CHADD and five national sister organizations (AACAP, ASA, CABF, MHA, and NAMI) issued five principles to consider. The five are a merged and consistent statement with the previous 13.

CHADD’s 13 principles and their enactment status are as follows:

1. Provide health care coverage for all Americans

The Congressional Budget Office (CBO), the financial scorekeeper for the Congress, estimates that health reform will cover 32 million currently uninsured Americans by 2019. However, CBO also estimates that 23 million Americans will remain uninsured by 2019. The 2019 uninsured group includes seven million undocumented immigrants and 16 million who will choose not purchase insurance, despite the individual mandate to purchase insurance.

Health reform requires all Americans to purchase insurance by 2014, with financial penalties assigned to those who don’t. Penalties are $95 in 2014; $325 in 2015; $695 in 2016 and indexed thereafter. However, low-income individuals who would have to spend more than 8 percent of their salaries for health insurance are not subject to the penalty. People who make too little to file an income tax return also are excused ($18,700 for a couple). A number of the young, healthy people may prefer to pay the $95 fine in 2014 rather than purchase insurance. Health-plan enrollment by these individuals would likely increase as the penalty amount increases to $695 (or 2.5 percent of the person’s income, whichever is higher) in 2016. A coalition of state attorney generals have filed lawsuits challenging the constitutionality of the individual mandate.

Health reform expands Medicaid mandatory eligibility to 133 percent of the federal poverty level in 2014 ($29,327 for a family of four). Ninety days after enactment, persons who have no access to insurance because of pre-existing condition exclusions could have their insurance premiums paid by a new “National High Risk Pool.” These pools would terminate upon the enactment of “insurance exchanges.”

Health reform mandates that states establish state-based health insurance exchanges for individuals and small businesses by 2014. Income tax credits would be available for persons with incomes less than 400 percent of the poverty level ($88,200 for a family of four) to purchase insurance.

2. Require “parity” for mental health assessment and treatment, including prohibiting non-discrimination between health conditions

Health reform extends the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (P.L. 110-343) protections to all health plans in the exchanges, as well as all commercial plans currently covered. Mental health and substance abuse benefits, to be defined by regulation, are also part of the mandatory “essential” health benefits package.

3. Prohibit discrimination on the basis of pre-existing conditions

Health reform requires that for plan years beginning on or after six months from enactment, health plans may not discriminate on the basis of pre-existing conditions for children. However, media stories have already identified a conflict between interpretations of this prohibition by insurers and by the Obama administration. Both the insurers and the administration agree that for children offered insurance, the plans must cover pre-existing conditions. The insurers argue that the law does not require them to issue health plan coverage for children with pre-existing conditions. Any children and others denied coverage for pre-existing conditions would be eligible for assistance in the National High Risk Pool to be established within 90 days of enactment.

In 2014, all pre-existing condition exclusions would be prohibited.

4. Prohibit health plans from terminating coverage when people become seriously ill or when they are treated for long-term chronic conditions and eliminate lifetime conditions

Rescissions (the practice of terminating health plan coverage) and lifetime limits are prohibited, effective for plan years beginning on or after six months after enactment.

5. Prohibit exorbitant out-of-pocket deductibles and co-pays

This goal is difficult to define and subject to lots of debate. The Department of Health and Human Services and the National Association of Insurance Commissioners would define by regulation what constitute “unreasonable” premiums, deductibles, and co-pays. There is much debate about the affordability of the premiums and subsidies.

6. Allow young adults to stay covered on their parents’ plan until the age of 26

Effective for plan years beginning on or after six months after enactment, health reform requires insurers to allow young people to stay on their parents’ policies through age 26.

7. Target specific coverage of young adults, particularly those with special health care needs

Not specifically addressed. A new long-term care program, named CLASS, would be created by 2014.

8. Target specific coverage of children, particularly those with special health care needs

Not specifically addressed. A new long term care, named CLASS, would be created by 2014.

9. Require continued affordable coverage when one loses or changes jobs

Health reform requires guaranteed issue and renewal, effective 2014. Individuals and families who purchase coverage through the exchanges will not be stuck with their employer’s health plan or subjected to losing coverage due to loss of job.

10. Include wellness and prevention services

Health reform creates a Prevention and Public Health Fund, which will provide for expanded and sustained national investment in prevention and public health programs to improve health and help restrain the rate of growth in private and public sector health care costs. The Fund provides mandatory funding, over the fiscal year 2008 level, for programs authorized by the Public Health Service Act, for prevention, wellness, and public health activities including prevention research and health screenings. It is important to note that, for fiscal year 2010, $500 million will be appropriated for the aforementioned initiatives. Additionally, Health reform instructs the HHS Secretary to plan and implement a national public-private partnership for a prevention and health promotion outreach and education campaign to raise public awareness of health improvement across the life span. Health plans are required to include annual wellness visits.

11. Promote integrated primary care with specialty services, including promotion of the “medical home” concept and including consumer-oriented and meaningful use of electronic medical records and personal health records

Health reform creates state grants for community-based health teams to support implementation of patient-centered medical homes and allocates funds to state Medicaid programs to implement such medical homes.

12. Allow consumers a choice of health plans

Health reform establishes state-based health insurance exchanges for individuals and small businesses by 2014. Income tax credits would be established for persons with incomes less than 400 percent of the poverty level ($88,200 for a family of four) to purchase insurance.

13. Include culturally and linguistically appropriate programs that affirmatively address racial and ethnic disparities, including the recognition of disability-based health disparities

Federally conducted and supported health care programs must collect data on race, ethnicity, sex, primary language, and disability status. A population is considered a health disparity population if there is a significant disparity in disease incidence, prevalence, morbidity, mortality, or survival rates or in quality, outcomes, cost, use of health services, or satisfaction with health services compared to the general population. Health plans and health providers are then required, albeit with federal financial assistance, to address these disparities.

Health plans in the health insurance exchanges are to conduct public education activities, including those that are culturally and linguistically appropriate for the needs of the population to be served. Federal grants will be available to promote shared decision-making between patients and professionals including trade-offs among treatment options, patient preferences, and patient values.

Conclusion

While many disagree about the appropriate role of the federal government in health care, the individual mandate, and the financial impact of taxes and fees, people with ADHD and related and co-occurring disorders should directly benefit from health reform. Individuals who have faced discrimination and lack of insurance coverage because of their disability would benefit from health reform. While issues of affordability continue to be confusing and controversial, health reform makes the most significant progress toward universally affordable and appropriate health insurance in generations.

Clarke

Promoting Employment of Adults with AD/HD to the SSA

2010-01-28T13:17:00.003-05:00

I am pleased to share a message from public policy specialist Cindy Smith on CHADD’s efforts to promote employment for adults with AD/HD. My 19-year-old son is in a post-high school program. He is struggling with getting to class and obligations on time, bringing all the materials necessary to learn and participate, and effectively organizing his time. Many young adults have these challenges. But if the daily and weekly challenges continue—even with supports—there is a disability factor involved. My son has had these substantial challenges his entire life.

Three CHADD volunteers—a young woman with AD/HD, an educator teaching adults in a community college setting, and a physician specializing in the diagnosis and treatment of AD/HD—recently testified to the Social Security Administration on accommodations needed by some adults with AD/HD in order to become and remain meaningfully employed. Chronic and substantial inattention and executive functioning challenges can be disabling and should be so recognized by the SSA. I am proud to share Cindy’s summary of CHADD’s advocacy efforts with the SSA.

Clarke

CHADD Provides Comments to Social Security Administration Advisory Panel
On January 20 and 21, 2010, three members of CHADD’s public policy committee provided public comment to supplement CHADD’s written recommendations at the quarterly meeting of the Occupational Information Development Advisory Panel (OIDAP). In addition to discussing their personal and family experiences with AD/HD, they explained how executive functioning skills, including the ability to sustain attention, can impact the ability to be gainfully employed. This is the first time CHADD has provided comment to an advisory panel convened by the Social Security Administration.

A subset of adults with AD/HD is unable to be gainfully employed because of the chronic, substantial inattention and executive functioning challenges caused by the disorder. CHADD is working to have the SSA recognize AD/HD as a disability that can inhibit the ability to work, and to ensure that reasonable job accommodations and supports are available for individuals who cannot engage in substantial and meaningful employment without them.

The OIDAP was formed on December 9, 2008, and charged with providing “independent advice and recommendations on plans and activities to replace the Dictionary of Occupational Titles currently used in the Social Security Administration’s (SSA) disability determination process.” The OIDAP has been working on meeting its charge, and recently published a summary of its work and recommendations in a report titled Content Model and Classification Recommendations for the Social Security Administration Occupational Information System (PDF).

Visit CHADD’s public policy webpage to see what CHADD is doing to advocate for adults with AD/HD and how you can help.

You can read this blog and others like it at the HealthCentral website.

Health Exchanges: What Are They?

2010-01-13T10:41:00.003-05:00

The healthcare reform legislation now separately approved by the House and Senate contains a new mechanism—health exchanges—for persons not working for large employers and not on Medicaid, Medicare, or other public programs to purchase health insurance. Working adults with AD/HD with modest incomes who not employed by large employers will look to health exchanges to purchase insurance. Enactment of the healthcare reform legislation would result in an estimated 30 million Americans receiving health insurance through exchanges. As a small employer (25 employees), CHADD would likely turn to an exchange for our health insurance.

What are health exchanges and how will they work?

A health exchange is a government-sponsored or authorized organized market for purchasing health insurance. Examples of existing exchanges are the Federal Employee Health Benefits Program (FEHBP), Massachusetts Health Connector, Connecticut Business and Industry Association Health Connections, and the Utah Health Exchange. Exchanges created in California, Florida, and Texas have closed, as they were not financially viable as structured. Governments do not operate these exchanges; rather, governments sponsor or authorize them.

I don’t want to scare people, but exchanges are based on the Clinton administration-proposed managed-competition philosophy, where preregistered and preapproved private insurance companies compete for enrollees based on publicly stated measures of price, benefits, provider networks, consumer satisfaction surveys, and in theory, quality. At a seminar I attended last week in Washington, DC, the CEOs of the Massachusetts and Connecticut exchanges stated that quality is not yet a factor in their exchanges. Only preapproved health plans meeting standards and requirements may compete in an exchange.

Exchanges would prior-approve health plans. Under healthcare reform, plans would have to deliver standardized benefits and would have to ensure practices such as guaranteed coverage and renewal (thus prohibiting pre-existing condition exclusions) and establish publicly known and regulated premiums.

There are major differences between the House and Senate legislation around exchanges: how much national government control and authority versus how much state government; how much public disclosure and transparency by health plans; how much authority to require risk pools and risk adjustments; how much authority to limit-regulate premiums. There are also differences in whether individuals who are not part of small group plans would use the exchange or some other mechanism to purchase health insurance. And, a larger issue of congressional healthcare reform is the affordability and amount of subsidy for people with modest incomes.

The seminar on exchanges was conducted by the Alliance for Health Reform and financed by the Commonwealth Fund and the Kaiser Family Foundation. The Alliance for Health Reform has posted a webcast, podcast, and videos of the seminar for anyone interested in learning more.

I hope this is helpful.

Clarke

You can read this blog and others like it at the HealthCentral website.

Health Care Reform: Status of CHADD’s 13 Principles

2009-12-30T11:33:00.003-05:00

The House and Senate have each passed health care reform legislation. What is the status of CHADD's 13 principles?

On August 13, CHADD issued 13 principles to consider in health care reform. On October 15, CHADD and five national sister organizations (AACAP, ASA, CABF, MHA, and NAMI) issued five principles to consider. The five are a merged and consistent statement with the previous thirteen.

CHADD's 13 principles and their legislative status:

1. Provide health care coverage for all Americans.

Health care coverage is greatly expanded in both bills. The Congressional Budget Office (CBO) anticipates 94% coverage in the Senate bill and 96% insurance coverage in the House bill once the bills are fully implemented.

The Senate bill expands Medicaid mandatory eligibility to 133% of the federal poverty level, while the House bill expands mandatory eligibility to 150%. Both bills create a "National High Risk Pool," the Senate bill for uninsured people denied coverage due to a pre-existing condition, the House bill for the insured and those denied coverage due to a pre-existing condition. These pools would terminate upon the enactment of "insurance exchanges."

The Senate bill would establish state-based health insurance exchanges for individuals and small businesses by 2014. The House bill would establish a National Health Insurance Exchange for those uninsured without Medicare and Medicaid coverage and for small employers. Data is inconsistent over the true extent of coverage.

Both bills require individual mandates to have insurance (2013 in the House, 2014 in the Senate) and non-small employer mandates to offer insurance. There is much debate on whether these coverage options are "affordable."

2. Require "parity" for mental health assessment and treatment, including prohibiting non-discrimination between health conditions.

The Senate non-discrimination requirement, including health status, medical condition, and disability, becomes effective 2014. The House bill includes mental health and substance abuse parity requirement and authorizes a Health Choice Commission to define the extent of the non-discrimination requirement. The Senate bill also requires mental health parity. It is covered as part of the essential health benefits package, but the language is not as clear as the House bill in terms of parity.

3. Prohibit discrimination on the basis of pre-existing conditions.

The Senate prohibition begins immediately for children and the prohibition becomes effective in 2014. The House bill reduces the "look back" period from 6 months to 30 days and the prohibition becomes effective in 2013.

4. Prohibit health plans terminating coverage when people become seriously ill or when they are treated for long-term chronic conditions and eliminate lifetime conditions.

"Rescissions," the practice of terminating health plan coverage, is prohibited, 2011 in the Senate bill and July 1, 2010 in the House bill. The House bill prohibits lifetime limits in 2010; the Senate bill contains a variety of approaches, 2011-2014.

5. Prohibit exorbitant out-of-pocket deductibles and co-pays.

This is a difficult to define goal and one subject to lots of debate.

6. Allow young adults to stay covered on their parents' plan until the age of 26.

The Senate bill allows coverage through the age of 25, effective 2011. The House bill allows coverage through the age of 26, effective 2010.

7. Target specific coverage of young adults, particularly those with special health care needs.

Not specifically addressed. A new long term care program, named CLASS, would be created by both bills.

8. Target specific coverage of children, particularly those with special health care needs.

Not specifically addressed. A new long term care, named CLASS, would be created by both bills.

9. Require continued affordable coverage when one loses or changes jobs.

The Senate bill requires guaranteed issue and renewal, effective 2014. The House bill requires guaranteed issue and renewal, effective 2010.

10. Include wellness and prevention services.

Both bills authorize the creation of a variety of wellness and prevention services. The Senate authorizes comprehensive workplace wellness programs with premium incentives and the House authorizes a grant program to small employers.

11. Promote integrated primary care with specialty services, including promotion of the "medical home" concept and including consumer-oriented and meaningful use of electronic medical records and personal health records.

Both bills would establish "accountable care organizations" and "medical homes," and expand the use of electronic medical records and personal health records.

12. Allow consumers a choice of health plans.

Both bills create government-sponsored health insurance exchanges. The Senate is state-based, while the House is national (with a state option to create their own exchange). The House bill has a public health insurance option, to be offered as one health insurance choice through the exchanges. This is an area of confusion and controversy. Regarding buying insurance across state lines, neither bill permits it as we know it today (e.g., a Massachusetts citizen won't now be permitted to buy Virginia Insurance Policy X). Under both bills, states may form regional compacts to offer insurance, but these can't be used to bypass state insurance regulations and consumer protections. Any citizen would still be buying insurance from within his or her own state's regulatory structure. Of course, once the new coverage/package requirements become effective (i.e., what qualifies as a qualified health plan), every plan must, at a minimum, satisfy these requirements.

13. Include culturally and linguistically appropriate programs that affirmatively address racial and ethnic disparities, including the recognition of disability-based health disparities.

Both bills promote work force diversity, require diversity data collection, and authorize grants to increase diversity services and expand services to the medically underserved. Disability is a recognized disparity.

I hope this summary is helpful as you sort through the issues of national health care reform. While many disagree about the role of the national government and the financial impact of taxes and fees, people with AD/HD and related and co-occurring disorders would greatly benefit from this legislation. People who have faced discrimination and lack of insurance coverage because of their disability would benefit from this legislation. Issues of affordability continue to be confusing and controversial. CHADD works with roughly 200 sister national voluntary health agencies, mental health, and disability organizations through a variety of coalitions to advocate a public policy agenda developed by our unpaid volunteer public policy committee and national board of directors. These coalitions have been identified in our previous public policy postings. We recognize that some of our members and constituents oppose these forms of national health care reform.

Clarke

You can read this blog and others like it at the HealthCentral website.

FDA to Promote Life Cycle Protections

2009-12-17T11:50:00.002-05:00

On December 8, the new Food and Drug Administration Commissioner, Margaret Hamburg, MD, told the National Health Council, which includes CHADD, that the FDA will be tracking and responding to a "life cycle" approach to medication treatment. Rather than approve medications for sale on the market after approved clinical trials and waiting for adverse reactions to be reported, the FDA (pending additional resources by Congress) plans to track medications over the course of a lifetime (termed "life cycle" tracking).

CHADD and roughly 50 other voluntary health agencies (VHAs) are members of the National Health Council. VHAs are organizations governed by unpaid volunteers, who raise memberships and donations from the public, and are focused on diseases, disabilities, and disorders. Dr. Hamburg was the featured speaker at the NHC December 8 annual meeting.

Dr. Hamburg emphasized the public health protection role of the FDA—anticipating public health change and modifying the FDA regulatory approach. She stressed the need for "personalized medicine," recognizing that while the great mass of the population will do well with a medication, the FDA must do a more effective job of identifying and then regulating adverse medication reactions by small subsets of the population. Part of this approach is to better identify at-risk populations.

The commissioner emphasized protection of food and nutrition and a more aggressive approach to regulating tobacco. She did not mention dietary supplements, other than eliminating hazardous supplements. I still hope that Congress one day will give the FDA the legal authority to regulate the quality and integrity of diet supplement ingredients and the legal authority to substantiate diet supplement claims. Many diet supplement manufacturers and distributors make unsubstantiated claims regarding the healing nature of such products for a variety of learning, developmental, and mental disorders. My family uses dietary supplements and we think they are helpful, but desire an objective third party to substantiate claims and integrity.

It is nice and reassuring to hear the new FDA commissioner thinking about a more proactive consumer and family protection focus. It was nice to see the FDA commissioner interested in communicating with roughly 50 national VHAs.

Clarke

You can read this blog and others like it at the HealthCentral website.

Neurofeedback: Seeking the Evidence

2009-11-10T14:49:00.004-05:00

Thousands of American families, including my own, have invested thousands of dollars in a promising intervention for AD/HD—neurofeedback. No health insurance plan in America pays for neurofeedback for the treatment of AD/HD as the evidence-based science is not yet there. CHADD’s Professional Advisory Board has published What We Know statements on the evidence-based science on complementary and alternative interventions, including neurofeedback, available on the website of CHADD’s National Resource Center on AD/HD.

CHADD advocates a significant additional financial investment by the National Institute of Mental Health in neurofeedback for AD/HD. During the past year, the CHADD Professional Advisory Board (PAB) has discussed with the International Society for Neurofeedback and Research (ISNR) the published science behind this intervention for AD/HD. At this point in time, we have asked ISNR eight key questions about the research. They are:

1. CHADD has stated that for a neurofeedback intervention to be described as "evidence-based,” we would expect to see randomized studies involving double-blind, sham control of equal intensity and duration. Does ISNR agree with this standard for evaluating the published science? If not, what are ISNR's standards for evaluating the published science?

2. Brainwave patterns profiles: There is ambiguity in the literature about: (a) whether or not there are different “profiles” for brainwave patterns; (b) whether or not these profiles can be categorized; and (c) whether or not these profiles can be reliably identified prior to intervention. What is ISNR’s position on the overall issue of profiles and their standardization?

3. Profile-based intervention: Are there standardized practice guidelines for neurofeedback clinicians to use in order to match profile with intervention? If so, is this done uniformly within the profession? Is there a manual that clinicians use for this purpose? Given that the need to match profile with intervention was emphasized in the letter from ISNR, why is this not made clear in the literature?

4. Generalization: Given that discussion of this is largely absent from the literature, to what extent do members of the organization feel that the effects that are seen generalize to other behaviors and real-life settings? What do clinicians say to patients in this regard?

5. Given the comorbidities present in most research samples of individuals with AD/HD, (a) what is the strength of the evidence that the intervention is specifically addressing AD/HD, and (b) to what extent are the dependent measures AD/HD-specific?

6. Persistence: What evidence is there that any effect seen persists, and does this vary by subtype of brain wave pattern? Should neurofeedback studies routinely include a 12-month follow-up assessment of outcomes? If so, should the dependent variables include real-life measures?

7. To what extent may the experience/expectation of the clinician/coach/trainer affect the outcome (i.e., is there a degree of “facilitation” in this type of intervention)? Given that you emphasize the importance of the trainer having clinical background and tailoring the training to the patient, how can it be clarified which factor—the neurofeedback itself or the intense repeated therapeutic interaction with the clinically trained trainer—is having the effect?

8. Who has access to purchase neurofeedback equipment? For clinicians using this equipment, does ISNR have any published or readily available guidelines concerning the qualifications a clinician must have or the minimal standards a clinician must meet?

As this CHADD PAB-ISNR dialogue continues, CHADD will keep the public informed, when there are advances in the evidence-based science.

Clarke

Work and Social Security Programs—Impact on AD/HD

2009-10-30T14:17:00.003-05:00

My 19-year-old son is in a post-high school program that offers trial work assignments, independent living skills, and social skills, combined with some community college. We are hopeful that he will develop work skills. Social challenges are his most immediate challenge. The prospect of no health insurance because of a lack of full-time employment with a large employer is a longer-term concern (and thus our support for national health care reform). With time and support, work should be a realistic goal.

At CHADD’s 21st annual international conference two weeks ago in Cleveland, we had two sessions on work, economic crisis, and Social Security programs. Rick Tully with the Ohio Department of Mental Health presented an overview of government programs to assist in times of economic hardship. These included the Social Security Administration (SSA) income assistance programs—Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). To qualify for SSI and SSDI, one must not be able to “engage” in “substantial gainful activity” and one must have a documentable medically determinable disability.

Tom Gloss of the Social Security Administration conducted a session on the Ticket-to-Work—Work Incentives Program. Ticket to Work is a program for persons already on SSI or SSDI who want to work.

AD/HD is a qualifying medical disability for SSI for children. One has to have substantial limitations, but it is a qualifying disability. There are 194,026 children (under age 18) on SSI with a primary or secondary diagnosis of AD/HD.

Currently, there are no SSA medical disability criteria for AD/HD in adults. The law requires that there be a medically determinable impairment and that there be substantial functional limitations. Adults who meet the Diagnostic and Statistical Manual (DSM) criteria for AD/HD would meet the medically determinable impairment criteria. Then, SSA would determine the severity of disability and its relation to work. Failure to precisely list AD/HD in adults will be a major roadblock to some individuals becoming eligible for SSDI or SSI. There are no SSA regulations preventing an adult with AD/HD from becoming eligible.

For any of the mental disorders, one must have substantial limitations in specific areas such as activities of daily living, concentration, social interaction, and ability to adapt to changes in the environment.

The challenge: Many people with AD/HD and related disorders don’t have the severity of limitations to meet the SSI and SSDI test. But they also may not have the ability to sustain permanent and consistent full-time work. Finding a social policy that encourages work, reduces disability, and provides health insurance—while keeping the social safety net of SSI and SSDI—is a very difficult challenge. CHADD continues to work with national public policy makers to address these difficult issues.

Clarke

You can read this blog and others like it at the HealthCentral website.

"Medical Homes" Included in Healthcare Reform Proposals

2009-09-23T13:17:00.005-05:00

This morning I attended a Campaign for Mental Health Reform congressional briefing, “The Integration of Mental Health and Health: Evidence from the Medical Home.” CHADD is a Campaign member. All five congressional committee draft healthcare reform legislative proposals contain financial incentives for creating and expanding “medical” or “healthcare” homes.

CHADD endorses the concept and experience of a “medical home” (clinical home/healthcare home) for children with special healthcare needs as defined, implemented, and advocated over the past decade by the American Academy of Pediatrics. Medical homes as defined by AAP are about a single medical practice taking ownership/responsibility to coordinate interventions for children with special needs, whether those children have either complex needs or a variety of needs.

The essential elements of a medical home for children with special healthcare needs are:
• Personal physician in a culturally and linguistically competent physician-directed medical
practice who provides continuous and comprehensive care;
• A focus on the “whole” child, youth, and family with coordinated care/services/supports;
• A family-driven partnership that ensures a coordinated network of community-based services where both physicians and families share accountability for quality improvement through a performance measurement system;
• A focus on transitions to ensure no disruptions of services as children and youth
progress through normal stages of growth and development;
• Privacy-protected, family-driven electronic medical records for communication with youth and families, and consultation between treating professionals.

One of the briefing speakers was Ted Epperly, MD, the president of the American Academy of Family Physicians. I asked the other speakers (a psychiatrist with the Carter Center Mental Health Program, a psychiatrist with the Missouri Department of Mental Health, and a PhD health and disease management director of prevention programs) if they agreed with Dr. Epperly’s policy and practice objective that every American have a “trusted relationship with a personal physician”? They did. All emphasized the need for a full interdisciplinary team. All agreed that the practice should be fully integrated and “patient-centered.” All agreed that the physician should be the “quarterback” of the team and have the ultimate accountability. All agreed that physician assistants, nurse practitioners, and various mental health professionals were essential to the team. All agreed that this was the goal. All agreed that this is not practice today, but we are moving toward it. All agreed that the electronic medical record was a methodology to help achieve this objective.

There are many different models of “medical homes,” involving different types of professionals based on the age and health situation of the consumer. CHADD supports adapting the AAP model for children with special needs to other populations, including adults.

Clarke

You can read this blog and others like it at the HealthCentral website.

AD/HD and the Role of Government

2009-09-02T13:04:00.006-05:00

Following receipt of our August 13, 2009 e-mail blast to our 68,000 constituents titled Get Involved—Health Care Reform and Congress—13 Principles to Consider, a gentleman asked to be removed from our mailing list. He was in his fifties and has lived with AD/HD his entire adult life. He commented that to deal with AD/HD, CHADD did not need to promote “government dependence.” So, I wanted to share with you some CHADD philosophy, as articulated through our public policy platform on adults with AD/HD and children with AD/HD, as developed and approved by our volunteer leadership.

Many people with AD/HD face policy obstacles to fulfilling their life expectations. These can be government policies and these can be business policies. For example, health insurance is regulated by government but mostly implemented by insurance businesses. In health care reform, we are just trying to eliminate discrimination and policy obstacles.

For example, CHADD’s 13 principles include the following three:

1) Health care plans should require “parity” for mental health assessment and treatment. This includes non-discrimination between health conditions.
2) Health care plans must not discriminate on the basis of pre-existing conditions or health status.
3) Health care plans must not terminate coverage when people become seriously ill or are being treated for long-term chronic conditions and must not have lifetime caps.

People with AD/HD frequently have less generous coverage and pay more out-of-pocket costs because of discrimination. People with “pre-existing” AD/HD are frequently denied health insurance. And people with AD/HD frequently face limits on the treatment of AD/HD over time. CHADD’s objective is not to make people with AD/HD become “dependent” on the government. Our objective is to eliminate discriminatory coverage policies so citizens with AD/HD can receive the same health benefits as other citizens.

Likewise, our objective that a health care initiative must provide health care coverage for all Americans is not intended to make Americans “dependent” on government, but to ensure that all Americans have the health insurance coverage that they need.

The last two principles I will address here are: a health care initiative that allows young adults to stay covered on their parents’ plan until the age of 26, and a health care initiative that specifically covers young adults, with a particular focus on young adults with special health care needs. As the father of a soon-to-be 19-year-old son with substantial co-occurring disorders, I am supportive of CHADD’s advocacy of these principles in order to avoid “government dependence.” The education system and the vocational rehabilitation system have encouraged our son to apply for Supplemental Security Income (SSI), as his vocational future is uncertain. The major reason for this encouragement is lack of health insurance—depending on student status, at ages 18 and 22 he is on his own to locate his own health insurance. Our son and his parents reject the notion of needing SSI at age 18. He has lots of years left to develop his vocational skills and enhance his education. But we are worried about health insurance. The Ross family opposes the economic incentive to apply for government financial assistance because of the fear and possibility of no health insurance. Parents throughout the nation and in our family and social circles have this same philosophy.

So, asking the government to provide adequate non-discriminatory health insurance for all citizens, particularly those with a history of special needs is not promoting “government dependence,” but encouraging independence to pursue life choices. As CHADD CEO, I regret that we lost a constituent. But as the father of a young adult with special needs, I am glad that I work for an organization whose volunteer leadership sees the validity of these objectives.

Clarke

You can read this blog and others like it at the HealthCentral website.

Research Interests and Priorities

2009-08-12T09:09:00.003-05:00

In the past two weeks, a federal government agency and a sister medical association have asked CHADD about our research interests and priorities related to AD/HD. Below is the list of 20 AD/HD research interests that we have tentatively identified.

1. Gene-Environment Interaction
2. Gene Risk Factors
3. Biogenetic Markers
4. Executive Functioning
5. Neurocognitive Deficits Associated with AD/HD
6. Brain Research Integrating Neurology and Psychiatry
7. Longitudinal Neuroimaging Research
8. Chart Trajectories to Determine Interventions
9. Lifespan Dynamics and Characteristics
10. Impairment Index
11. Mental Disorders as Developmental Disorders
12. Personalizing Interventions
13. Impact of Culture, Race, Etc. (including disparities and possible differential medication impact)
14. Translate Research to Practice (and Public Health)
15. Core Features of AD/HD versus Comorbidity Features
16. Autism-AD/HD Interface
17. Efficacy of Neurofeedback
18. Outreach to National Center on Complementary and Alternative Medicine
19. Patient Perspective into Evidence-Based Practice (including the lived experience)
20. Evidence Base of CHADD's Parent to Parent Program

Many of these topics are discussed in some depth in our National Resource Center on AD/HD (NRC) website and in the public policy section of CHADD's website.

Your questions, observations, and commentary will be very helpful as we refine the list.

Clarke

You can read this blog and others like it at the HealthCentral website.

Health and Wellness in Health Care Reform

2009-07-07T10:36:00.010-05:00

CHADD is pursuing the promotion of health and wellness as part of our health care reform agenda.

A blogger and former CHADD chapter coordinator reacted to my June 25 blog on health care reform messages noting: “Totally left out of the debate are such factors as encouraging health and wellness. A huge chunk of our health care costs arise from avoidable conditions—obesity, lifestyle choices (smoking, for instance), inactivity, and so on.” I did leave this out of my blog entry that week; however, CHADD is actively involved with this objective. Blog comments are supposed to be very brief; thus, I limited my message and links to two coalitions.

Encouraging health and wellness is an important component of health care reform and part of both the National Health Council (NHC) and Campaign for Mental Health Reform (CMHR) advocacy. CHADD works through these coalitions. The NHC comprises roughly 44 voluntary health agencies (VHAs), including those addressing heart, cancer, diabetes, epilepsy, arthritis, asthma, and autism, as well as CHADD. We reach consensus and publicize the consensus.

Likewise, the CMHR is a coalition of 17 national mental health associations, including National Alliance on Mental Illness (NAMI) and Mental Health America (MHA). We reach consensus and publicize the consensus. My June 25 blog merely highlighted the priorities of these two important coalitions. These 61 national health organizations are serious about the principles I discussed in last week’s blog.

CHADD participates in three organizations where promoting health and wellness are important advocacy elements:

1. The Whole Health Campaign is a newer coalition that advocates integration of mental health and substance abuse into public health systems promoting healthy lifestyles, preventing disability and disease, encouraging lifelong management of chronic disease, monitoring health trends, and linking people to needed health services. The Whole Health Campaign advocates five actions to promote health and wellness that includes mental health and substance abuse. Link here for their five actions and paper on health and wellness.

2. Between January and May, the federal agency Substance Abuse and Mental Health Services Administration (SAMHSA) has convened “listening” sessions with mental health and substance abuse organizations, including CHADD. The result of these sessions was the SAMHSA publication of nine principles. The first principle is: “Articulate a national health and wellness plan for all Americans, with a focus on prevention and early intervention.” Link here for a copy of the SAMHSA principles.

3. CHADD co-chairs, with the March of Dimes, the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) External Partners Group (EPG) advocacy effort. The U.S. Congress, through the Economic Stimulus Act, established a new $600 million Prevention and Wellness Fund. The EPG was instrumental in convincing the Congress to insert “disabilities” in the initial legislation. At the last moment, in back-door tradeoffs, “disability” was deleted and the Fund focuses on chronic and infectious diseases. We continue to advocate that disability be included in prevention and wellness programs. Learn more about these efforts on the CDC-NCBDD website (click on “partners”) or visit the EPG website.

Several blogs ago I summarized the National Academy of Sciences’ Institute of Medicine report on prevention of mental health challenges in teens and young adults. This is a component of health and wellness.

Visit the public policy section of the CHADD website to see the comprehensive agenda we are pursuing. You can also read the health care reform objectives CHADD submitted to President Obama’s transition team. A single blog, briefly reviewing a few of the coalition efforts we advocate, is no substitute for the comprehensive agenda we work on.

There are many other aspects to health care reform, many of which CHADD is involved with. Visit our public policy website and keep the comments coming—particularly directly to your elected members of the U.S. Congress.

Clarke

You can read this blog and others like it at the HealthCentral website.

Health Care Reform Messages

2009-06-25T10:45:00.005-05:00

Every day in the national media there are reports of the debates, discussions, proposals, and controversies about national health care reform. This is a very complicated arena.

Here are the highlights of CHADD’s priorities for health care reform (as of today).

CHADD, as a member of the National Health Council Voluntary Health Agencies, advocates five principles in addressing health care reform, as part of the Council’s “Campaign to Put Patients First” initiative:

1. Cover everyone.
2. Curb costs responsibly.
3. Abolish exclusions for pre-existing conditions.
4. Eliminate lifetime caps.
5. Ensure long term and end-of-life care.

At CHADD’s encouragement, each NHC principle includes an emphasis on “non-discrimination between health conditions.”

CHADD, as a member of the Campaign for Mental Health Reform, advocates the following priorities for mental health in health care reform:

6. Parity for mental health conditions in health benefit design; something stronger than “nothing in this legislation shall prevent implementation of mental health parity” and adequacy of the mental health benefit for subpopulations, such as children.
7. Chronic Care-Chronic Condition Management must include mental illness and mental disorders, such as serious and persistent mental illnesses such as schizophrenia, co-occurring physical illness and mental illness such as health attack/stroke and depression, and co-occurring mental disorders such as the AD/HD child mental disorder co-occurring prevalence data. Focus on lifelong disorders.
8. Encouragement of the “medical home” concept whereby professionals take responsibility for coordinating, integrating, and communicating services and supports. Included in this are consumer-family access to electronic medical records and implementation of personal health records.
9. Affirmative provisions dealing with racial and ethnic disparities, and affirmative provisions recognizing “disability based health disparities.”

There are many other important priorities. These are CHADD’s current priorities, through our membership in these two coalitions. CHADD belongs to many other Washington, DC-based coalitions.

Let us know if there are any very important principles missing from our current priorities. Get involved with your senators and representatives in the U.S. Congress to ensure that these priorities are included.

Clarke

You can read this blog and others like it at the HealthCentral website.

Faces of AD/HD

2009-05-20T12:27:00.003-05:00

Ask five people with AD/HD to describe their AD/HD, and one is likely to hear five different stories. Each will describe how inattention, hyperactivity, and/or impulsive actions created challenges. Each person’s intelligence, creativity, personality, natural supports (family, faith, neighborhood, community), school supports and accommodations, and access to professional and peer interventions will impact the degree of their challenges. Add co-occurring disorders and another mix of experiences occurs.

Two weeks ago, during National Children’s Mental Health Awareness Day, CHADD witnessed three different faces of AD/HD.

CHADD participated in the American Academy of Child and Adolescent Psychiatry (AACAP) Congressional visit day. CHADD organized appointments with members of Congress and media interviews with two young college students with AD/HD—Blake Taylor, author of AD/HD and Me, and Courtney Gifford, the reigning Miss Wyoming. Both Blake and Courtney have benefited from access to professional and school supports. Both have strong natural supports. Both are gifted individuals. Both articulated what living with AD/HD was like and how they have benefited from a variety of supports. Blake and Courtney will be featured in CHADD’s member benefit, the June issue of Attention magazine. CHADD members can read this article as soon as it’s posted on the Attention section of the website at the beginning of June.

That same week, CHADD’s president, Marie Paxson, was recognized for her effective family advocacy work by the Commonwealth Academy, a private school in the greater Washington, DC area. Presenting the award were James Carville and Mary Matalin, whose daughters successfully overcame AD/HD and learning challenges in school. James discussed his challenges with AD/HD, describing how an extremely talented and bright guy with high energy deals with his challenges to this day, including the night of the award presentation. CHADD’s June Attention magazine will feature an interview with James Carville, and Mary Matalin will be interviewed in the August issue. CHADD members can read these interviews as soon as they’re posted on the website—part one at the beginning of June, and part two in August!

We each have our stories of dealing with AD/HD. Some have highly successful outcomes. Some are funny. Some are painful and depressing. With some, measuring success is more difficult. Attempting to accurately portray the face of AD/HD to the public will remain a challenge. It takes many forms and we have many different experiences. We should appreciate and learn from the variety of experiences.

Clarke

You can read this blog and others like it at the HealthCentral website.

Media's Rush to Publish Can Mislead Parents

2009-04-23T12:14:00.002-05:00

On Monday, April 13, USA Today published a commentary titled “New Findings Raise Questions about Use of ADHD Drugs.” CHADD was asked to prepare a counterpoint; however, USA Today editors would not share their commentary with us before publication. They verbally informed us that they would significantly caution against the use of medications and they would criticize CHADD for receiving funding from pharmaceutical companies. We proceeded to prepare a statement.

You can read the commentaries here or go to the homepage of our website and click on Media coverage on effective treatment under the “In the News” section.

As the father of a son with AD/HD and co-occurring challenges, I found the limitations and conditions imposed by USA Today confining. I previously shared some of my personal understandings of the NIMH-funded Multimodal Treatment Study in the context of other published research with CHADD’s Professional Advisory Board. I share here my understandings as a Dad.

1. At six to eight years, participants’ functioning remained improved compared with their functioning at the beginning, but the research does not “prove” this is related to specific treatments.

2. First year of treatment does not predict functioning after three years.

3. Six to eight years after initial treatment, children and adolescents with AD/HD still had significant academic and social problems but not as bad as at the baseline.

4. Thousands of personal stories from across the nation received through CHADD, including my own, report that proven treatments, including medication and structured behavioral interventions, are helpful. The MTA study did not conclude that treatments were ineffective; merely that over time, when they no longer receive systematic research-based intervention, participating children continued to have significant problems.

5. We have known for several years that, on average, there is height suppression early on with the medication. Parents have to balance this “on average” finding with the consequences of not treating AD/HD and their degree of access to high-quality structured behavioral interventions, special education services, parent training, and other helpful supports.

6. We have clearly known since the 1999 Surgeon General’s Report on Mental Health that for a subset of the population, medications either don’t work or have severe side effects. This issue was not addressed in the six-to-eight-year MTA Study follow-up.

7. As with many medications to treat a variety of illnesses and disorders, over time people with AD/HD stop taking medication.

8. People who remain CHADD members over a multi-year period of time, such as my family, generally seem to have family members with more severe forms of AD/HD and/or co-occurring mental and learning disorders. Researchers need to increase their attention to the more severe forms of AD/HD and those with co-occurring disorders. This is not an MTA Study finding, just common knowledge.

9. We know that good treatment must be sustained over time.

10. We know that optimal treatment combines a variety of coordinated approaches. For years, CHADD has referred to these combinations of treatments using the NIMH phrase “multimodal.” Maybe we need a new phrase, since many people focus just on the NIMH-funded MTA study when this phrase is used.

11. Scientists don’t know all the answers. Scientists should think carefully about the message they send to parents, families, consumers, and the public when they get too involved in the complexities of a particular research methodology or when they advocate one intervention to the detriment of other helpful interventions. Scientists should not initiate therapeutic squabbles about therapies. We parents are just looking for the best combination of what works.

12. The media seems obsessed with focusing on controversy, disagreements between scientists, and negative stories. CHADD attempts to deliver a message to the public that is science-based, balanced with the lived experience of thousands of families across the nation. When the science is unclear, we are uncertain. USA Today attempted to make the issue black-and-white—medications are either good or bad—in its point/counterpoint. In reality, there is a broader toolkit of interventions. We parents, if we have access to these various interventions, choose what we think are effective combinations. Severity of the disorder influences these selections.

13. Access to professional services and natural supports plays an important role in an individual’s success in dealing with life and with the symptoms of AD/HD. This is not an MTA Study finding—it is common sense, based on what we know about a family’s lived experience.

USA Today criticizes the CHADD website for not having detailed warnings about medications and the MTA Study—before the study follow-up was actually published. But rather than rush with a headline, CHADD wants its professional advisory board to reach a consensus on what published studies actually say before we disseminate the information.

USA Today criticizes CHADD for accepting funding from pharmaceutical companies. Since 2001, we have published on our website the amount, percent, and company donating. We have published on our website our policies and philosophies, including avoidance of conflicts of interest, and we limit such funding to no more than thirty percent of our revenue. CHADD’s practices are consistent with those of the leading voluntary health agencies in America. We are a national network of 12,000 members and 70,000 involved constituents, with hundreds providing volunteer support for others. We happen to accept some funds from industry, which allows us to broaden our services and support.

These are my thoughts as a Dad dealing every day with the consequences of AD/HD in the family. The media and all of us should strive to not lump under a single label the variety, complexity, and severity that constitutes what we call today AD/HD.

Clarke

Preventing Disorders Among Young People

2009-04-08T11:27:00.003-05:00

We know that AD/HD is an abnormality of how the brain functions, and we know that there is frequently a genetic element. We also know that environmental elements can influence brain development. We know that natural supports, such as home and community, can influence the symptoms of AD/HD. Now, the Institute of Medicine (IOM), National Academy of Sciences (NAS) has issued a new report, Preventing Mental, Emotional, and Behavioral Disorders Among Young People. This 400-page report, by the most prestigious body of medical science in the United States, is expensive and can be ordered here through the IOM. The IOM recommends that the national government make healthy mental, emotional, and behavioral development of young people a national priority, establish goals, and provide needed research and service resources to address the goals.

The report concludes that early interventions can be effective in delaying or preventing the onset of mental disorders among young people. CHADD's sister organization, Mental Health America "concurs" with the IOM, "supports the faithful implementation of a strong science base," and observes that "unfortunately, we lack a national initiative to advance the use of prevention and promotion approaches to benefit the mental health of the nation's young people."

The IOM recommends that national priorities should include:

1. Individuals who are at risk receive the best available evidence-based interventions prior to the onset of the disorder.
2. Promotion of positive mental, emotional, and behavioral development for all children and youth.
3. Poverty is a serious adversity that must be addressed.
4. Neighborhood violence is another serious adversity that must be addressed.

The IOM recommends federal agency research coordinated with practice. The government should identify communities with significant community-level risk factors and target resources to these communities. Researchers and community organizations should form partnerships to develop evaluations. Screening programs should be linked to interventions and evaluations. Risk and protective factors for specific disorders should be researched, and a focus should be on strengthening accomplishment of age-appropriate developmental tasks.

CHADD will be asking members of our professional advisory board to summarize programs cited by the IOM "as worth duplicating across the country," including:

1. Clarke Cognitive-Behavioral Prevention Intervention
2. Good Behavioral Game
3. Positive Parenting Program
4. Promoting Alternative Thinking Strategies (PATHS)

Prevention requires an investment of commitment and resources. The nation's school districts should be more responsible and involved with such prevention programs.

Clarke

You can read this blog and others like it at the HealthCentral website.

Medication Treatment for AD/HD

2009-03-27T10:22:00.004-05:00

An article about medication effectiveness and side effects is circulating in the media. A piece by Shankar Vedantam appeared on the front page above the fold of today’s Washington Post. The article highlights some of the disagreements that have arisen between leading scientists over a follow-up to the landmark Multimodal Treatment Study on AD/HD. We encourage concerned parents to learn more by perusing the CHADD website and the website of CHADD’s National Resource Center on AD/HD. As always, parents should consult with their treatment and prescribing professionals before making any decisions about the treatment of AD/HD. Any treatment, including treatment of AD/HD, must be individualized to meet the unique circumstances of the person and his or her family.

Clarke

You can read this blog and others like it at the HealthCentral website.

Take and Make Time

2009-03-18T14:25:00.003-05:00

My son Andrew, now age 18, and I just returned from our third consecutive baseball spring training trip to Florida. Our annual journey together has been a wonderful opportunity to bond.

This may be our last trip for some time. Next year Andrew will be out of high school and we are working on developing a post-high school experience. He may not be available. If the economy does not substantially improve, there will be no more vacations in the Ross family, after one we are planning in June in celebration of Andrew’s completion of high school. One never knows if a next opportunity will be there, but we will remember the last one.

It has been fascinating and wonderful to observe Andrew’s growing maturity and independence over these last three years of trips. He is a guy with a variety of special needs, significant inattention and anxiety among them.

Three years ago, Andrew had difficulty navigating a stadium without my prompts and supports. Now, he navigates any baseball stadium by himself, whether to get a hot dog, ice cream, score card, or memorabilia. He is comfortable at the ballpark.

Three years ago, Andrew needed me with him when he sought autographs. Now he is comfortable dealing with the crowds swarming for autographs and obtaining them himself.

Three years ago, personal hygiene was a challenge. He didn’t recognize its importance. Starting on our first trip three years ago, I insisted that he adhere to a personal hygiene schedule. Shaving, showering, putting on clean clothes, and other self-care tasks had to be completed before we went to the ballpark. Now he sees personal hygiene as part of his preparation for the day. (We still have major organization and neatness issues, however.)

Three years ago, Andrew never initiated discussions about his life situation and resisted answering my questions about the subject. While this remains a challenge today, during this year’s trip Andrew offered a few insights and questions about life—and his own life.

People grow, develop, and mature at very different rates. We need to provide patience, structure, and role modeling. Patience, structure, and role modeling pay off. It just takes some people a little longer.

If at all possible, take the time—make the time—to spend special time with your children. Andrew and I will remember these trips to Florida for the rest of our lives. They are special. Enjoy them as you are able.

I hope this isn’t too simplistic or self-evident. I hope it reinforces your thoughts and instincts. We had a great baseball trip—and as a Dad, I feel more hopeful than ever.

Clarke

You can read this blog and others like it at the HealthCentral website.

Economic Stimulus and People with Special Needs

2009-02-13T12:31:00.005-05:00

Many Americans have been following action in Congress on legislation designed to stimulate the economy. CHADD members, donors, and supporters have a variety of views on this legislation, reflecting viewpoints across the nation. CHADD has been actively engaged in this effort. Given the variety of opinions, I wanted to share our thinking and approach.

For over 21 years, CHADD’s volunteer citizen board of directors and volunteer citizen public policy committee have developed the organization’s public policy platform. The platform advocates proactive federal support of the health, education, employment, and related supports for those individuals affected by AD/HD who require such supports. Not every person with a diagnosis of AD/HD requires this level of support. CHADD also advocates for research on the causes and treatments of AD/HD as well as efforts to promote prevention and wellness.

CHADD did not initiate a national government economic stimulus program; the leadership of the United States did. Once Congressional leaders launched such an effort, CHADD joined our sister national associations to advocate for enhanced funding for

• special education services under the Individuals with Disabilities Education Act (IDEA);
• disability in the Centers for Disease Control and Prevention (CDC) Prevention and Wellness Fund;
• electronic medical records promotion to increase the likelihood of coordinated and integrated medical services; and
• increased Medicaid services at a time of significant job loss.

There are many other support and research programs important to people with AD/HD and related disorders contained in the legislation. Coalitions to which CHADD belongs have supported some of these other programs. The four above have been CHADD’s priorities for work.

Promoting jobs, preventing job loss, mechanisms to promote economic recovery and protection—these are big-picture legislative goals. If legislators act, our role is to advocate for supports helpful to those people with AD/HD and related disorders who need such supports.

Click here for details on the legislation.

Let us pray that the efforts undertaken by our leaders work for America.

Clarke

You can read this blog and others like it at the HealthCentral website.

Disability: Pride, Acceptance, Power

2009-01-21T12:27:00.003-05:00

On Sunday night, my wife and I attended the first ever Disability Power and Pride Inaugural Ball. The organizers stated that about 1,000 people attended. Former U.S. Representative Tony Coelho, who lives with epilepsy and serves on the national board of directors of the Epilepsy Foundation of America, served as master of ceremonies. Leading members of the U.S. Congress came by and spoke. President-elect Obama sent a written letter of gratitude and greeting.

I went to celebrate the progress of the movement I started working with in 1971, and to chat with fellow “gray hairs” about our progress. But what was evident, as soon as we walked in the door, was that this is a youth movement. Walking the streets of DC to get to the ball, we saw that young people were everywhere—excited and full of enthusiasm. Folks at the ball, while excited, hopeful, and full of dignity and pride, were concerned with their underemployment or nonemployment.

As President-elect, Barack Obama typically included messages about inclusion of people with disabilities. His written message emphasized, "In my administration, we will address the shameful employment situation for persons with disabilities." My son, aged 18, will graduate high school this coming summer. We have great anxieties about his next steps, about the many obstacles in the transition, and ultimately about gainful employment down the road. In recent years, CHADD has made applications to agencies of the federal government and private foundations to constructively and directly assist families dealing with the transition from school to work. We have not been successful.

Finding the balance is a key. We know that highly intelligent and creative folks with AD/HD do well in life and employment, despite their challenges (the Ned Hallowell school of thought). We know the result of failure to provide structured support and accommodation (the data documentation of Russell Barkley). CHADD has featured both experts at our annual conferences. Our challenge—and the challenge facing federal public policymakers—is how to recognize and build on the strengths and capabilities of individuals with disabilities, while acknowledging and modifying policies that provide the supports and accommodations to promote independence, happiness, and success. We really need an "individualized" response, which does not exist.

As an example, the U.S. Congress is working on an economic stimulus initiative. The House legislation includes a Centers for Disease Control and Prevention (CDC) initiative to lay the foundation for job growth by dealing with chronic illness. CHADD and sister national organizations working with the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) are trying to convince Congressional leaders to insert "disability and health" into these initiatives.

These are very challenging times. These are times of hope and opportunity. CHADD hopes we can continue to find the right balance between recognizing and building on capabilities while building the supports and accommodations people with disabilities need to be successful.

We will keep you informed.

Clarke

You can read this blog and others like it at the HealthCentral Web site.

Living with a Child with a Disability

2009-01-07T11:47:00.003-05:00

by Cynthia A. Smith, MS, CAS, JD

On December 16, 2008, I attended a press conference announcing the release of the findings from a research project titled Living with Autism. Although the study focused on children with autism spectrum disorders, I could not help but think a study on families of children with AD/HD or any disability that significantly impacts daily living activities might share some of the same findings.

I thought back to all the children with disabilities I worked with in high school and college, and to my own family experiences. As I listened to the results, I mentally checked off items of concern that I had heard from parents of children with disabilities over the years. The study confirmed for me what many family members and care providers have known for years: A child’s disability does not just change how we care for a particular child, it also affects the entire family because of physical and attitudinal barriers in society.

Harris Interactive surveyed 1,652 parents of children who have an autism spectrum disorder and 917 parents of children without disabilities. Parents were questioned regarding the ongoing challenges their families face in the areas of daily life, relationships, independence, education, housing, finances, employment, and healthcare, as well as how they view their child’s future. Some of the findings include:

- 14 percent of parents of children without disabilities think their child will be able to make their own life decisions, compared to 65 percent of parents of children with autism.

- 51 percent of parents of children without disabilities think their child will be able to have a spouse or life partner, compared to 9 percent of parents of children with autism.

- 60 percent of parents of children without disabilities are concerned about their child’s future employment, compared to 76 percent of parents of children with autism.

- 32 percent of parents of children without disabilities believe their child will be living at home beyond age 18, compared to 79 percent of parents of children with autism.

- 42 percent of parents of children without disabilities believe their child will have healthcare that adequately covers their needs, compared to 18 percent of parents of children with autism.

More information about the study is available here.

Cynthia A. Smith, MS, CAS, JD, is CHADD's Public Policy Specialist.
You can read this blog and others like it at the HealthCentral Web site.

Organizing a Local Town Hall Meeting to Help the State Legislature

2008-12-18T15:54:00.000-05:00

Last week my wife and I attended a town hall meeting in our county organized by three local disability family organizations. The Maryland state legislature convenes in mid-January, and this was an effort to educate both families and public officials at the same time and in the same place.

It was a successful event. Two members of the Maryland State House attended and stayed to listen to the stories. The county executive attended, listened, and was the last speaker. Staff members from the offices of four members of the Maryland legislature attended; one discussed her personal experience as a mother of a child with special needs. A member of the county school board, the county special education director, and several county agency staffers attended.

The meeting was held in a prominent and conveniently located church. Members of the three hosting organizations attended in good numbers. Family members received reminder telephone calls prior to the meeting, encouraging attendance. There were moving personal stories. The organizers served desserts and beverages. They had a printed agenda.

The organizers did not publicize to the community at large, so it was a speaking-to-the-choir experience. As with all CHADD chapters and support groups, the entire program was organized and presented by citizen-volunteers. The presentations frequently were disjointed and common themes (other than we need more money) frequently got lost in the presentation. Two speakers did not show. There was no content takeaway.

So, for anyone planning a local event, I suggest the following:

1. Collaborate with several organizations to co-host.
2. Assertively outreach to your members through personal contact.
3. Publicize the event to the community at large.
4. Select a neutral, prominent, and convenient location.
5. Tell people there will be food.
6. As public officials confirm their attendance, revise the publicity and outreach materials to indicate their attendance.
7. Coordinate, and then develop common themes and messages.
8. Prepare a one-page takeaway of common themes and messages with content that legislators and agency officials will understand and use in their work.
9. Timing is important. Holding an event the month before the legislature convenes is great—close enough, but not too close.

Good luck as you work to inform the public, and its governmental leaders, about AD/HD, related disorders, and the lived experience. Slowly, build a social movement from the neighborhood up.

Clarke

Think About a Special Needs Trust

2008-12-03T16:21:00.003-05:00

Ever think about how you will provide for your child with special needs once you are no longer around? Over the Thanksgiving weekend, my wife and I established a special needs trust with our son Andrew, now age 18. I strongly encourage any family with a child who has significant special needs to consider establishing such a trust.

To effectively design and implement such a trust, you need an experienced attorney who specializes in such work. We located such a firm and attorney by word of mouth. We have information on possible legal resources to assist with such trusts on CHADD’s National Resource Center on AD/HD Web site; see Finding an Attorney and also the Other Web Sites section on the main Living with AD/HD page. And there is a national organization that is devoted to this subject, the Special Needs Alliance.

Our resources will go into a special trust, the sole purpose of which is to promote Andrew’s welfare. The trust needs flexibility as circumstances and eligibility and rules governing public assistance programs change. We don't know the circumstances Andrew will face. We don't know if public programs will be helpful or not. The only real concern we have is the need to have a dependable and knowledgeable trustee. Currently we have one—my wife's youngest sister. This is great for now, but Andrew has no brothers or sisters. At some point, health and aging may mean that we will have to find another trustee—younger, healthier, dependable, willing to make all decisions to promote Andrew's welfare, knowledgeable enough to be able to figure out (with legal or advocate assistance) the impact of public program rules and their interplay with the trust resources. This may be difficult.

While with our specialist attorney, Andrew decided that it would be reassuring to him to grant his parents limited power of attorney regarding health decisions and money decisions. Andrew may never need this assistance. But if a crisis occurs and Andrew needs our assistance, we are legally authorized to help. This requires a trusting relationship and careful, deliberate communication between the family members. Andrew and we feel more assured with this authority in place.

Good wishes as you plan your future.

Clarke

Changing Public Policy Where You Live

2008-11-20T16:48:00.005-05:00

CHADD recently collaborated with sister family advocacy organizations demonstrating that you, working with others, can change government policy where you live.

During the past eleven months CHADD has participated in a state public policy advocacy project in collaboration with the National Health Council (NHC). CHADD Pennsylvania, a collection of unpaid volunteers who initially met in January 2008 and officially organized in June 2008, was able to secure the introduction of legislation in both the Pennsylvania state senate and state assembly to allow part-time college students with disabilities to continue health insurance coverage under their parents' policies. Click here for details on the Pennsylvania legislation.

A 2007 National Health Council survey found that only one percent of those affected by chronic illnesses and disabilities are advocates on behalf of "patient advocacy organizations." An objective of NHC and CHADD is to increase citizen participation in governmental issues.

CHADD is one of fifty voluntary health agencies/patient advocacy organizations that belong to the National Health Council. "Voluntary" health agencies are those governed by non-compensated volunteer boards of directors. "Patient" advocacy organizations are those who advocate for a single illness, disability, and disorder. CHADD was one of four VHAs selected to receive staff technical assistance to influence state or local legislation. The other three were Alopecia Areata Foundation, Epilepsy Foundation, and Huntington's Disease Society.

The key to success in state and local public policy advocacy depends on four tasks:

1. Break Down the Walls - Involve consumers and families in advocacy work; Create a work group.
2. Identify an Objective and Secure Resources - Organize and target resources to the objective.
3. Maximize "Inclusion" - Make noise - Develop strategies and tactics.
4. Stay Focused - Stay on message - Implement your targeted objective.

Click here to read the entire NHC report, Grow Your Grassroots and Better Influence Public Policy: Strategic Advocacy Plan and Case Studies From the National Health Council.

Keep at it.

Clarke

Economic Self-Sufficiency

2008-10-30T15:16:00.004-05:00

My son is now 18 years old and a senior in high school. We are struggling with what happens after high school—work preparation and self-sufficiency. One of the greatest impediments to our planning is that health insurance coverage is dependent on either full-time employment by a large employer or his being deemed by the government as “permanently and totally disabled.” For millions of young persons with special needs, they are neither. Cindy Smith, CHADD’s public policy specialist, attended a conference on this topic. Below is her summary.

This week I attended the Asset Development Summit for Persons with Disabilities and Their Families and launch of the Real Economic Incentive Tour for 2009. These events were sponsored by the National Disability Institute and other partners in Washington, DC. The development of personal assets is a topic I thought about frequently as I transitioned from school to work and back to school, and like many students made the decision to borrow the necessary funds to pay for my education. My experience has been remarkably similar and yet incredibly different from my peers with disabilities.

No one ever encouraged me to apply for public benefits, no one ever discouraged me from working. It was always assumed, barring some unforeseen circumstance, that I would finish school, find full-time employment, pay back my student loans, and begin slowly to save for my eventual retirement, and accumulate the funds needed to pay for my other life goals such as owning a house, taking a vacation, paying the living expenses of my children. Why is this not the same story for youth and adults with disabilities? Why is it that working-aged adults with disabilities are three times more likely than their working aged adults without disabilities to live at or below the poverty line?

The all-too-familiar story I have heard while answering the phones at legal services organizations was echoed at the Summit: the story of not going to work because of the fear of losing cash benefits, health insurance, and possible discrimination because of disability.

One of the Summit’s overarching goals was to increase awareness of a paradigm shift that is beginning—the shift from the belief that people with disabilities must live in poverty to the belief that people with disabilities can and should be able not only to lead economically self-sufficient lives by being able to work, but also to develop assets. Mechanisms are developing to allow this shift to occur—for example, the use of tax credits such as the Earned Income Tax Credit, the development of financial literacy programs such as America Saves, and the creation of waiver programs by Medicaid.

Tobey Davies, who directs the Center for Community Economic Development and Disability at Southern New Hampshire University, presented case studies that documented the ability of people with disabilities to use a combination of resources in order to meet their goals of buying a home or taking a vacation. The silos of progress have a long way to go before they are fully realized and our society becomes one in which people with disabilities can lead economically self-sufficient lives within their communities. Currently, over half of taxpayers with disabilities in the United States have incomes at or below $20,000 and an additional 27 percent have incomes under $40,000. Progress is slow but is starting to occur. Resources are available to assist people with disabilities in developing, retaining, and growing their assets. More information on this topic can be found here.

Cynthia A. Smith, MS, CAS, JD, is CHADD’s public policy specialist.
You can read this blog and others like it at the HealthCentral Web site.

Reducing Discrimination in Health Insurance

2008-10-15T14:20:00.004-05:00

Come new health insurance plan implementation in January 2010—yes, that’s 2010—arbitrary and discriminatory health insurance treatment of many mental disorders will cease. CHADD has been very involved, with the entire national mental health community, in getting the Congress of the United States to pass mental health parity. Mental health parity is a legal means prohibiting insurance discrimination based on a mental or substance abuse disorder. Influencing public policy to assist people with AD/HD and related disorders is a major purpose of CHADD.

In 1996, Congress passed a “partial” mental health parity law that prohibited annual and lifetime expenditure limits on health insurance coverage of mental health treatment. The 2008 law prohibits differences between coverage for mental health and physical health treatment with regard to copayments, deductibles, and number of visits. While the new law became effective in October 2009, most health plans take effect in January. Thus, you will see this reflected in health plans in January 2010.

The law sends a positive message reducing the stigma against mental disorders. The enforceable law establishes federal public policy to eliminate overt discrimination against and to increase treatment for mental disorders. But there are gaps in the law.

The New York Times cited federal officials who said the law would improve coverage for 113 million people, including 82 million in employer-sponsored plans that are not subject to state regulation. Employers who employ fifty or fewer people are not covered by the law. The law does nothing for those without health insurance. The law allows a company to apply for a cost exemption if the company can demonstrate a greater than two-percent increase in actual costs the first year.

Not every condition listed in the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is covered. Health plans have discretion on which conditions to cover. While advocates of this provision typically cite such things as caffeine intoxication and sleep disorders resulting from jet lag, at CHADD we know of health plans that do not cover adult AD/HD. Until the published science is as sound for adult AD/HD as it is for childhood AD/HD, there will be plans that will not cover adults. CHADD continues to advocate a better science base for the diagnosis and treatment of adult AD/HD.

The law allows the “management” of health benefits and the cost estimates underlying the law assume “managed care.” We will likely see more tightly managed mental health benefits, meaning claims by the health plan’s management agent that treatment is not “medically necessary” or “clinically appropriate.” But under the new law, insurers must disclose their criteria for determining medical necessity, as well as the reason for denying any particular claim for mental health services.

So, we have made a significant step forward in helping people with AD/HD, particularly those with more complex cases of AD/HD, and those with co-occurring disorders. But we will continue to need public policy advocacy to deal with barriers and obstacles. We will continue to need a more solid science base. CHADD’s financial resources are currently under stress, given the economy. We encourage you to help CHADD in our advocacy efforts.

Copies of the new law, HR 1424 (which will be published as P.L. 110-343), are available here; see pages 117-129.

Clarke

Anxiety

2008-10-03T09:10:00.003-05:00

As my son grows and develops, certain challenges become a barrier to his happiness and success and other challenges fade or diminish. How much his responses result from learning and maturity, and how much is the result of professionally provided interventions, who can really tell? One thing has been constant for Andrew—most new situations cause significant anxiety.

Here I am speaking about clinically significant anxiety that gets in the way of normal life functioning. All of us face anxious moments. But Andrew’s anxiety is ongoing; it ebbs and flows and gets in the way of his enjoying and succeeding in life.

Statistically, the overwhelming majority of children with AD/HD have co-occurring disorders. When Andrew was a little guy, one summer he was afraid to leave the house because he feared bugs and bees flying around. A structured, consistent multi-intervention program helped him overcome these fears. But he can still get a little anxious when flying insects are buzzing by. For a young man approaching age eighteen, anxiety has social consequences. Social situations are probably the biggest anxiety-producing situations for Andrew. He can get really uptight.

Andrew has been blessed with a good sense of humor and we have built a variety of family, church, community, and professional supports for him. These reduce anxiety and allow him to grow and mature. Parents need to be on the lookout for symptoms of severe or chronic anxiety, and obtain a professional assessment if necessary. As with any health and developmental challenge, act quickly to avoid longer term consequences. Andrew’s transition to ninth grade was extremely difficult, and nothing worked for him during that period. He began developing other symptoms, such as depression and hostility. When we changed his environment (which took an entire school year), the depression and hostility disappeared and his normal good humor and gentle nature returned. But changing the environment meant change, and change increased anxiety. He hated the change at first. But it was very helpful in the long run and Andrew now recognizes this.

Andrew still is not great at recognizing his anxiety and taking positive steps to deal with it, but he is learning. Situations that enhance his self-esteem help his ability to deal with anxiety. Situations that reduce his self-esteem make his anxiety worse. Getting his teachers and other professionals to recognize this and consistently act is always a challenge.

The last few weeks have brought a great deal of anxiety about the financial markets for all of us. I hope you are okay in dealing with these uncertain economic times. I hope you will continue to think of supporting CHADD when you can. I hope you will attend CHADD’s upcoming conference, which will offer research-based information to help you deal with the challenges AD/HD and mental and learning disorders can present. And I hope you will take quick action if you see yourself or your loved ones having anxiety so severe that it is interfering with success and happiness. Try to look at the bright things in life.

Clarke

AD/HD Awareness and Avoiding the Gift/Difference/Disability Debate

2008-09-17T14:29:00.002-05:00

This is AD/HD Awareness Week. We are delighted that the United States Senate passed, for the fifth consecutive year, a resolution recognizing an AD/HD Awareness Day—September 18, 2008. To read the resolution, visit thomas.gov and search for S. Res. 649. See our Web site for CHADD’s activities to promote awareness during this week.

A CHADD member benefit is receipt six times a year of our award-winning Attention magazine. Attention offers advice and information about AD/HD from scientists, families, and advocates. The October 2008 issue includes an article by CHADD volunteer leader Gina Pera titled, “Dealing with Denial.”

Many of us get upset and uneasy when people portray AD/HD as “gift,” as a “difference,” or as a “disability.” We each think about our own family experience and challenges when people generalize and make simplistic claims about the disorder. Gina offers five guidelines to keep in mind about dealing with denial, one of which is, “Avoid getting stuck in the gift-or-difference debate.” I have a strongly-held view about this debate, based on my son’s lifelong experience, but this can easily distract us.

Gina’s second guideline offers the most important element of this dynamic to me personally: “Is the behavior creating distress for the person? Is it impairing the person in important areas of life functioning (relationships, school, work, ability to manage basic needs)?” And Gina poses a related question: “Is it creating havoc for their loved ones?”

As we attempt to better inform ourselves and the public about AD/HD, I encourage you to become a member of CHADD, to receive our magazine six times a year, to have access to magazine archives going back as far as 1998, to receive information and support, and to be part of an advocacy movement that influences and shapes public policies. Join us in our effort to build a social movement of support for persons with AD/HD and related disorders.

Clarke

Medical Homes for Children with Special Healthcare Needs

2008-09-03T07:26:00.003-05:00

My family has been fortunate in many ways. With great health insurance, we selected a pediatrician several months before our son was born. For almost eighteen years we have benefited from having the same pediatrician. He is knowledgeable, accessible, friendly, convenient, and well-connected to the specialist community in the Baltimore-Washington area. He is comfortable referring us to needed specialists and is motivated to integrate specialist knowledge into my son’s overall interventions.

CHADD endorses the concept and experience of a “medical home” (clinical home/healthcare home) for children with special healthcare needs as defined, implemented, and advocated over the past decade by the American Academy of Pediatrics. As defined by AAP, medical homes are about a single medical practice taking ownership/responsibility to coordinate interventions for children with special needs, whether those children have either complex needs or a variety of needs.

The essential elements of a medical home for children with special healthcare needs are:
• Personal physician in a culturally and linguistically competent physician-directed medical practice who provides continuous and comprehensive care
• A focus on the “whole” child, youth, and family with coordinated care/services/supports
• A family-driven partnership that ensures a coordinated network of community-based services where both physicians and families share accountability for quality improvement through a performance measurement system
• A focus on transitions to ensure no disruptions of services as children and youth progress through normal stages of growth and development
• Privacy-protected, family-driven electronic medical records for communication with youth and families, and consultation between treating professionals.

My son has had numerous health and developmental/learning challenges over his lifetime. What I want to see happen is every child in America having access to a pediatric practice that meets the essential elements of a medical home as defined above. This is also a “hot” topic in Washington’s debate over healthcare reform. A topic for another day is all the issues and challenges with this model. I am very actively involved in these medical home public policy debates. CHADD also supports the Putting Patients First campaign of the National Health Council, an effort to promote care coordination through electronic medical records.

I have recounted to CHADD audiences many times my son’s challenges and our frustration, even with a great pediatrician, in coordinating and integrating professional information in helping my son. I asked a CHADD-Pennsylvania volunteer leader, Kirsten Leonard of West Chester, to share her experiences in accessing, coordinating, and integrating professional help for our children. Both our families have seen a variety of professionals over time. Both our families benefitted from participating in early intervention programs. One thing Kirsten and my wife Beth have in common is that despite access to great professionals, they are the care coordinators. Their families are fortunate that Kirsten and Beth have the time, ability, knowledge, and resources to so coordinate. Think of all the parents in our society who don’t have the time, ability, knowledge, or resources to coordinate professional services for their family members. The medical home model is designed to make such information sharing and coordination less burdensome on the family and more a medical practice responsibility.

I asked Kirsten some questions about coordinating interventions and moving toward a medical home model.

Did your child have needs for services and interventions beyond a single medical professional?

Yes, although the qualifier here is what is considered “medical.” Our son was born with very low tone and increased deep tendon reflexes. He also suffered from extreme gastroesophageal reflux. He qualified for the North Los Angeles Regional Center as an at-risk infant. The Regional Center is a private, nonprofit organization providing services and supports to persons with developmental disabilities and their families. The Regional Center provided our son with physical therapy to increase his tone. When he was eighteen months old we decided to put him in an Early Start program through the Santa Clarita Valley SELPA. Until he was three years old this program coordinated all of his services which included physical therapy, occupational therapy, speech therapy, behavioral therapy, and counseling. While they were happy to speak to all of our son’s medical doctors, they did not really coordinate services his medical services.

Which other professionals attempted to meet your son’s needs?

We also worked very closely with his gastroenterologist, allergist, and pediatrician. Most of his “medical” intervention was coordinated by me. Sometimes we used the services of a neurologist and a developmental pediatrician. Our family also sought the counsel of a psychologist who was trained to help families of children with special needs.

What role did the primary medical practice engage in to coordinate these interventions?

None.

As a mom, what obstacles, challenges, and frustrations did you face in getting services coordinated (even integrated)?

I believe that we were luckier than many families. The Early Intervention program our son was in was awesome. They were our point people for all of his needs with the exception of his medical services. I served as his case manager with all of his doctors, which was somewhat frustrating. In my opinion, the biggest obstacle to overcome was gaining the doctor’s respect. Many members of the medical establishment treat parents as though they are ignorant and not worthy of being an equal member of the “team.” The other major hurdle was that each specialist liked to lay claim to whatever was going on with our child. For instance, our son exhibited behaviors that were not appropriate for a three-year-old child. He hit other children a lot! The gastroenterologist blamed the behavior on the fact that he was in pain from his GERD and was acting out. The allergist stated that the behavior was probably due to allergies. The neurologist said that he was PDD-NOS, while the developmental pediatrician diagnosed AD/HD. In truth, all of these things were components of the problem, but none of these specialists were correct in isolating their own area of specialty as the sole cause of the behavior. As the case manager, it was up to me to keep a “whole-child” perspective to determine what was really going on. It would have been nice to have a medical professional on our team who could help other professionals to see the big picture!

How were medical records shared/coordinated/even integrated?

They really weren’t. Each specialist would write up a report that was sent to our son’s pediatrician. Sometimes, they would confer on the phone with the pediatrician as well.

Given your experiences, what, ideally, do you want to see happen to benefit other families whose children will be experiencing similar challenges as those you faced?

I truly believe that the best course of action is built upon a model that looks at the needs of the whole child. I think of it as one-stop shopping, where medical professionals from all of the specialty areas are under one roof and work together as a team to best meet the needs of the child and the family. Families with children who have any kind of special need are way too taxed in their day-to-day life with the child to have enough energy to serve also as the case manager. They need to be able to rely on a trusted medical professional to act in this capacity.

I am more than willing to share the story on the excellent care that we received when our son was young; however, I do not believe that our experience fits exactly with the medical home model. I have read through the articles you wrote about your story with Andrew, and I believe that our experience might be closer in line to yours than a true "medical home."

I would like to personally thank Kirsten for her willingness to share her personal experiences and story. Only by sharing can families educate and help other families. This is part of CHADD’s mission: consumers and family members supporting other consumers and family members.

Clarke

Accomplishment and Self-Esteem

2008-08-20T15:10:00.001-05:00

AD/HD is frequently characterized by an inability to stay focused on a task—repeatedly and significantly. The Sunday, August 17 issue of the New York Times featured an article on Michael Phelps, “AD/HD Didn’t Keep Phelps From Finding His Focus—On the Gold.” Teachers throughout his early school years observed that Michael could not focus to achieve goals. Yet, no Olympian has won more medals than Michael.

My son Andrew is 17. First identified at age 11 months as having developmental delays, Andrew has always had significant trouble staying focused on the task at hand. And he still faces attention challenges. Yet, this summer, he obtained and succeeded in his first paid job. His self-esteem has increased while mastering what the world expects—gainful employment. No Olympic medals, just modest but meaningful goal attainment. To Andrew, his mother, and me, these are significant.

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." As Andrew grows and matures, his islands of competence continue to expand. He is still very anxious, still socially awkward, still has learning challenges, and still has major doubts. But he is succeeding.

It’s interesting to read the many stories about Michael Phelps. Teacher after teacher told Michael’s mother that he could not focus, he could not stand still, he could not be an academic success. But he was academically okay and his island of competence was swimming—and now he is the greatest swimmer of his generation and holds the most ever Olympic medals. It’s important for people living with AD/HD to pursue interests they enjoy and at which they excel. Phelps’ success demonstrates that being a part of a supportive family, setting goals, engaging in enjoyable activities, and receiving positive feedback are all important in building self-esteem. Phelps is clearly an exceptionally talented athlete and a source of pride for the millions of people affected by AD/HD.

Andrew’s goals are much more modest. This summer he participated in a summer school program where in the mornings he focused on getting ready to pass “No Child Left Behind” state standardized exams so he can graduate next year from high school. In the afternoons he assisted the school’s IT director—for pay—by loading new software on school and faculty computers. Loading computer software is now an island of competence. In the late afternoons and evenings he enjoyed field trips, including attending four minor league baseball games.

Those who know us and those who have read my previous blogs know that Andrew and I share a passion for baseball—for the Baltimore Orioles, for the Boston Red Sox, and for the two major league players we have met through CHADD who are connected to AD/HD, Scott Eyre and Jeff Conine. This summer Andrew took his passion and joy for a sport and turned it into paid employment. Through friends at church, Andrew applied to the Bowie Bay Sox—the Anne Arundel County affiliate of the Baltimore Orioles, ten minutes from our home. This weekend Andrew began his employment as a main gate ticket taker. He has to arrive an hour before the gate opens. He has to help set up the gate area. He has to get organized to retain the ticket stubs after taking them. He has to be patient and friendly. His work is done by the top of the fourth inning, and he gets to see the last five-plus innings of the game. It’s not Olympic gold, but it is normal life and attainment of a life goal—paid employment in an arena that he enjoys.

With support, focus on a goal, and effort, people with AD/HD can succeed. Some receive New York Times coverage. Some are worth a good feeling inside and hope for the future.

As you struggle with your own AD/HD or as you struggle with your family member’s AD/HD, be satisfied with every little step toward success and happiness.

Clarke

Dealing with Health and Educational Disparities

2008-08-12T14:31:00.002-05:00

For the fifth consecutive year, CHADD was actively involved in the annual convention of the National Medical Association. CHADD’s mission is to improve the lives of people affected by attention-deficit/hyperactivity disorder and related conditions. NMA’s mission is to advance the art and science of medicine for people of African descent.

At this year’s NMA conference, CHADD hosted a dinner for the NMA section on psychiatry and behavioral sciences, offering presentations about AD/HD that covered the lived experience, public attitudes, and special education placement. CHADD also hosted a community forum on AD/HD at an African-American church in Atlanta.

The success of the dinner typifies CHADD. The event was a perfect example of professionals and family members educating each other and sharing their experiences. NMA psychiatry section chair Diane Buckingham, MD, who also serves on CHADD’s professional advisory board, served as emcee. The featured speaker was Karran Harper Royal, a mom from New Orleans and former member of CHADD’s board of directors. Karran spoke movingly about the experiences of her brother and her two sons, all of whom live with AD/HD.

Here are some points to ponder:

Disabilities occur at a higher rate among individuals who are African American (19.2 percent) and Hispanic/Latino (26.1 percent) than among Caucasians (18.9 percent).

African-American children are under-represented in treatment for AD/HD when compared with Caucasian children.

For African-American children with Down syndrome, life expectancy has not kept pace with increases in life expectancy for Caucasian children with Down syndrome.

African-American children with autism are typically diagnosed five years later in life than Caucasian children with autism.

Something is clearly wrong here.

With the March of Dimes, CHADD co-chairs an advocacy coalition working to convince Congress to appropriate $5 million to address racial and health disparities in health outcomes for the special populations served by the Centers for Disease Control and Prevention. Health disparities are defined as the differences in the presence of disease, health outcomes, and access to health care across groups.

As CEO, one of my commitments has been to engage in meaningful and respectful outreach to the African-American community. This has been demonstrated through CHADD’s relationship with the National Medical Association, the roughly forty community forums that have been held since 2001, and my efforts as co-chair of the workgroup on health-care disparities.

Economic times are tough and CHADD’s revenue is down. It is harder to continue this work. But we are committed to continuing our work in the coming years. If you can provide financial support to help us continue this work, let us know.

Clarke

Public Attitudes

2008-07-23T16:04:00.002-05:00

In the last several days lots of activities have me focused on public attitudes and public understanding about AD/HD and related disorders.

CHADD has worked this week with potential legislative sponsors on a renewal of U. S. Senate recognition in September of AD/HD Awareness Day. This coming Saturday, I speak to the National Medical Association’s section on psychiatry and behavioral science on public attitudes and AD/HD and special education placement issues. Last Saturday, CHADD conducted a public forum targeted to the African-American community in Prince George’s County, Maryland, where community attitudes were discussed. And we have radio talk show host Michael Savage and his colleague Selwyn Duke making declarations this week about the “fraud” of autism, added to their previous declarations about the “fraud” of AD/HD, and the reaction of family members to these declarations.

Family support groups, such as CHADD, have a mission to increase awareness of these disorders to foster a greater level of acceptance and understanding of the very real and significant challenges individuals with disorders and their families face. Growing up and living with substantial disabilities in daily life are emotionally, physically, and financially draining. My family is so fortunate to have supportive extended family, caring community of faith, financial and health insurance resources, and informed communities and networks. With all of this, it is still difficult to deal with our challenges, expectations, emotions, and pain. Negative, hostile, antagonistic public attitudes from some individuals don’t help.

We are all aware of the organized groups that deny the existence of mental disorders and declare that these disorders are fraud. But others in society who are not apparently connected with these organized anti-psychiatry groups foster this notion that AD/HD, autism, and other behavioral challenges are “willful” actions by “brats” with inadequate parental direction. My son’s 17 years of difficulty are not willful; he is a delightful and kind person, and he has loving, supportive parents and family.

Just after the last presidential election, Armstrong Williams declared: “There is no scientific basis for the diagnosis of AD/HD. If a child is bored, distracted, and or boisterous in the classroom, he is often believed to be suffering from AD/HD, or to say, childhood.”

This week, Michael Savage declared that autism is a “fraud” and a “racket”, adding that “in 99% of the cases, it’s a brat who hasn’t been told to cut the act out.”

Part of me says let’s just ignore such ignorance and get on with helping our family member grow, develop, and live as normally as possible. Let us work with the professional community and fellow families to build supports. But a mission of CHADD is to rely on our professional advisory board to share the published scientific evidence to counter the spread of misinformation. So part of me says prepare a blog on this subject.

To defend themselves against the public outrage from autism groups across America, from advertisers pulling their financial support of his program, and from radio networks discontinuing sponsorship of his program, Michael Savage and his supporters say that they are just trying to attract public attention to overdiagnosis of autism, AD/HD, and other behavioral disorders. Okay, then let us focus on science-based diagnosis, whether health care professionals actually practice using evidence-based diagnostic guidelines, and the consequences of persons mildly challenged with some symptoms of these disorders. That is a legitimate and important discussion. But why demean individuals, children, and their families with loaded words such as “fraud,” “racket,” and “brats.” This causes tremendous pain. Mr. Duke actually defended Mr. Savage’s attack on the existence of autism by stating, “It seems as if taking offense is the recreation of choice in modern America.” A radio host declares that autism and AD/HD don’t exist, they are frauds, they are caused by lax parenting because “they don’t have a father around to tell them, ‘don’t act like a moron. You’ll get nowhere in life.’” And then they complain because those of us living with family members who have disabilities take exception. This is an interesting logic. Who is the heartless and insensitive party in this? Mr. Duke then quickly declares that this is all caused by “an irresponsible psychiatric community” and “trigger-happy diagnosticians” whose “most egregious example of their handiwork is ADHD, a mythical condition that has become a handy excuse for bad behavior.”

We need to focus on the published evidence of science. We need uniformity in professional diagnosis, adhering to evidence-based guidelines. When Lawrence Diller, MD, states that many families come to him because their children have mild symptoms of AD/HD and want an edge up in school, let us discuss severity in daily functioning and significant failure to meet the daily expectations of life. But don’t call us “frauds” and don’t call our children “brats.” Whatever happened to the notion of Christian charity in our society—of putting ourselves in the shoes of others and having empathy?

CHADD will continue to work with the professional community in enhancing the science behind disability. CHADD will continue to convene persons with disorders and their families to exchange life experiences and provide mutual support. Some of us will continue to speak out against ignorance whose purpose is to harm.

Stay strong as you deal with challenges of daily life. Seek out support.

Clarke

Self-Direction and the Transition to Adulthood

2008-07-17T12:00:00.002-05:00

My son Andrew enters his senior year in high school this September and turns 18 in October. People who don’t know us well ask, “What’s he going to do after high school?” Well, for now, we are focused on an academic graduation degree, which means he has to pass his state standardized exams. He is also enhancing his independent living skills, being introduced to possible job areas, and possibly earning his driver’s license. These are major goals for the coming ten months. Andrew’s life post-high school will be influenced by his success with these high school areas.

CHADD is recognized and financed by the Centers for Disease Control and Prevention (CDC) as the National Resource Center on AD/HD (NRC). On July 16, we produced our quarterly free electronic newsletter, “NRC News,” and this one focused on “The Next Step—From School to the Workplace.” The newsletter is posted on the NRC Web site. The newsletter makes two significant points that we can affirm in our family:
• “Transitioning from the world of school to the world of work can be a trying time.”
• “Preparing for the transition from school to work is a long term process that starts while you are in high school.”

This summer, for six weeks, Andrew is enrolled in a high school program where for a few hours each morning they focus on the standardized state education exam material. Each afternoon they are assigned to job sites to be exposed to job skills and demands, in order to determine where they have interests and abilities. They live in a group house to enhance their independence and social skills, and they get lots of off-campus trips. For example, there are two minor league baseball clubs near campus, and my baseball-fan son loves going to the game to end a day.

The University of Pennsylvania Collaborative on Community Integration for persons with serious mental illness, with funding from the National Institute on Disability and Rehabilitation Research, and in collaboration with the Bazelon Center on Mental Health Law, has just published In The Driver’s Seat: A Guide to Self-Directed Mental Health Care. This is a 40-page guide to help adult clients of the nation’s public mental health system design and help implement their own plans of support. The report contains principles and approaches that should assist all persons with disabilities coping with independence.

A “self-directed” care plan concentrates on “recovery” and builds on an individual’s strengths and skills. With the help of facilitators, participants in self-directed care programs develop life/recovery plans that identify their personal goals, identify the barriers to their achieving these goals, and outline the steps and resources needed to implement the plans. Public mental health programs in Florida, Iowa, Michigan, and Oregon are implementing self-directed plan programs and the guide reviews these and other similar public programs.

The guide briefly discusses the question of an individual’s “capacity” to participate in self-directed care at any given time. This is a complex question, frequently made more complex by an individual’s anxiety, low self-esteem and low self-expectations, and sometimes a sense of helplessness. These challenges can be overcome.

Andrew, his parents, and an estate attorney specializing in disability issues now are discussing not only estate issues, but issues of targeted and focused power of attorney. We are trying to collectively identify areas in which Andrew will probably need some support and backup when he turns the magic age of 18, and we hope to create a system to have in place if a crisis hits. “This ain’t easy,” but it is important to discuss as we transition to the next stage in Andrew’s life.

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 son with special needs. See my May 6 blog, “Recovery, Hope, and Self-Esteem” for my initial personal thoughts. A lot more thinking, research and personal experience need to enlighten this topic.

Good luck as you and your family work through these difficult transitions.

Clarke

When Experts Disagree

2008-07-02T15:55:00.006-05:00

by Marie S. Paxson

If you’ve been following CHADD’s recent blog entries, you are aware of the recent attention paid to the American Heart Association’s recommendation that children and adolescents using medication to treat AD/HD should consider getting an EKG to rule out a rare but serious heart defect. Others in the medical field felt that this recommendation was too assertive and that a physical exam and detailed medical history would suffice. Both sides of the issue agree that a registry should be set up so that there is firm data on exactly how many people are affected when AD/HD medication is used by those with an undiagnosed heart defect.

So as an individual or family member affected by AD/HD where does this leave you? (spoiler alert - I have no answers to this question). The standard advice is to check with your physician. But will he/she know? What is his/her background and training for patients with AD/HD? The answer may vary, but most likely they received significant training on heart function, so that is reassuring.

By now, you have probably experienced other times in your life when experts disagreed. In my family of four, for example, at one time we had two psychologists, a psychiatrist, a pediatrician, and a family doctor helping us with AD/HD-related issues. It didn’t happen often, but there were times when these trusted individuals weren’t on the same page about how to address some of our family’s issues.(Let’s face it, five people can’t agree on pizza toppings, let alone something this complex). Sometimes I could tell by their body language that they weren’t onboard with the other team members, other times they flat-out told us they didn’t see the value in following the other expert’s recommendation.

But I recall the words of my psychologist: “Marie, your family is not a do-it-yourself project!” and she encouraged me to assemble a supportive, knowledgeable team to help with this journey into the unknown. I have to admit my first thoughts upon hearing this were “We can’t be that bad, can we?” But then I realized that no one would have THIS many professionals on her speed-dial if things were going smoothly.

I guess it is a fact of life that those whose opinions we value won’t always agree with each other. So here is what I do when this situation causes confusion for me. I ask myself some questions: will anything negative happen if I take the time to sort things out for a bit? Sometimes new information and facts surface and that will help me make a better decision. Am I catastrophizing – are my concerns reasonable or am I projecting future doom? I learned to catastrophize after so many things went WRONG. Now at least, I recognize when I’m in that zone. Is there any partial action I could take that might be helpful? Is one piece of advice easier to follow than the others? I check with others who are going through a similar situation to get their opinions. And lastly, is anything about this keeping me awake at night? If so, that is what I address quickly.

While professionals will disagree, one question you should ask any physician you are considering – are you familiar with and do you practice the AD/HD evidence-based guidelines published by the American Academy of Pediatrics and American Academy of Child and Adolescent Psychiatry? At least you can determine their initial understanding of the diagnosis and treatment standards within the medical profession.

Looking for physician guidelines on the treatment of adult AD/HD? (The American Heart Association EKG recommendation pertains to children and teens.) Stay tuned—CHADD’s Professional Advisory Board will be reviewing current guidelines and we will have more information on this in the future.

Marie S. Paxson

Marie S. Paxson is the president of CHADD.

Tips for Surviving a World Filled with (Mis)information: Part II

2008-06-19T09:59:00.003-05:00

It’s Friday, 5:15 PM. As the CHADD staff is preparing for the weekend, a call comes in from a reporter seeking comment on an embargoed press release that will be widely disseminated on Monday. How should CHADD respond?

This scenario is more than hypothetical. This really happened several weeks ago, when the American Heart Association released a statement urging that children undergo full cardiovascular monitoring, including EKGs, before being treated with medication for AD/HD.

How would you have responded? Would you have quickly taken the most cautious stance and provided the best information you had available at the time? Would you have stepped back and not responded, thereby running the risk that other people or (anti-mental health) groups would monopolize the coverage and provide completely inaccurate information?

These decisions are never easy, and CHADD always takes its public statements seriously. In this particular case, we came out with the most cautious statement possible based on the limited information we had on the topic at the time. We said the AHA position would make an already safe process even safer. But as many experts began weighing in with analysis, based on the scientific findings, many of them concluded that the AHA’s recommendation was perhaps overreaching and not completely cost-effective.

Even the AHA scaled back to some degree on its position by working with the American Academy of Pediatrics on an erratum and media advisory. The AAP developed its own statement that ran counter to the original AHA statement. At CHADD, we’re working with our professional advisory board to develop a position on the issue, and there continue to be many people in the field with varying opinions on the topic.

This is the nature of the beast we deal with. Given the demand of the news media’s deadlines, CHADD leadership often has to act quickly, releasing the best science-based information that is available about a given topic when the media call. But sometimes, as more information and expert analysis come in, it is necessary for us to change (hopefully ever so slightly) our position. We realize this can be frustrating and confusing to you and others, but it is necessary.

It is important to remember that when it comes to many of the issues we deal with in this arena, information is seldom static. Typically, positions and statements do evolve over time as more information comes in. You may have noticed that there are some people in the news, many of whom have anti-mental health care agendas, who are very quick to draw definite and sweeping conclusions about new research. CHADD, on the other hand, is very careful to release statements that are nuanced and cautious about drawing certain conclusions. This is because we understand that the interpretation of research can change when it’s placed in its proper context. We also know that, as additional research on the topic is conducted, we get a fuller picture. As Abraham Lincoln once said, “Yes, you’re right, I have changed my position. I’d like to think I am smarter today than I was yesterday.”

We rely on our professional advisory board consensus interpretation of the published science. Sometimes the published science is stable for a period of time, but many of the media explosions are interpretations of a new study of science—with little to no context or history—just a headline beginning “Study Declares.” CHADD’s soundest statements are our What We Know papers, developed over time by the consensus of our professional advisory board, considering the entire body of published science (see the Web site of CHADD's National Resource Center on AD/HD). As CEO, responsible for accurate interpretation of the published science, and as a father of a son with special needs, I get annoyed by this media need for an immediate "headline of controversy" rather than a more thoughtful analysis of what the research actually means. But media headlines dominate our daily lives.

When the follow-up to the Multimodal Treatment Study on Children with AD/HD was released several months ago, there were media reports saying the study proved that medication loses its effectiveness. Yet, many members of the media failed to explain that people taking part in this longitudinal study were no longer receiving the kind of care that they received at the beginning of the study. The intensity of treatment had changed for many of the people who had been on medication. In some cases, some people had gone off of their medications, while others, who had not been on medications when the study began, started taking them. The public did not receive a full explanation of the study's follow-up findings; instead it was treated to a simplistic interpretation of them. These issues were clarified in the April 2008 issue of CHADD's Attention magazine.

The takeaway from all of this is that it’s important for you, as a news consumer, to hold off on drawing conclusions just because you’ve received some information from the media or even a reputable organization. Continue to visit reputable sites to see how these stories are evolving. If you have concerns about how the stories will impact you or your children, then we encourage you to talk with your health care provider.

But, most of all, it is important to us that you understand why CHADD at times expounds upon an issue, and at other times shies away from speaking in absolute terms and in sound bites. We're disseminating information that is accurate and we're waiting for the best research to inform our efforts. Keep visiting the Web sites of CHADD and the National Resource Center on AD/HD. We're constantly producing information on relevant topics in the news.

May you have the best of luck and all the best resources the next time you're trying to get to the bottom of a story about AD/HD!

Clarke

A World Filled with (Mis)Information

2008-06-12T11:28:00.002-05:00

Recently a Web site promoting natural health alternatives and healthful foods posted an article questioning the safety of medications used to treat attention-deficit/hyperactivity disorder. The article made unsubstantiated claims based on flawed interpretations of various scientific data.

Among its many false assertions, the article used a recent brain study to claim that stimulant medications actually stunt the growth of children’s brains. That is despite the fact that not one person in peer-reviewed, published science, including the researcher himself, has made that deduction based on the research findings.

The research cited showed that there were children with AD/HD who experienced a delay in brain maturation when compared to those without the disorder. The takeaway—and one always has to be careful with takeaways based on just one study—was that delay in brain growth is a product of the disorder, not caused by its treatment.

The article also claimed that a recent follow-up to the landmark Multimodal Treatment Study of Children with AD/HD (MTA) concluded that medication loses its effectiveness after a period of time. Yet, according to the lead researchers on the MTA, this was not necessarily the conclusion from the follow-up study’s findings. The study did affirm the need for continuous supports and interventions for treatment success to be maintained.

Because I value you as a reader, I will not continue to burden you with the unscientific misinformation that was presented in this article. The bottom line is that this author has a viewpoint to sell. He advocates diet elimination and supplementation plans as a way to treat AD/HD. But the scientific research that has been conducted in this area has found no evidence that eliminating foods from or adding supplements to one’s diet makes any difference in the treatment of AD/HD, a neurobiological disorder. Research has demonstrated the potential value of Omega 3 fatty acids, whether in your diet or with supplements.

Research has shown that a combination of education adaptations, parent training, behavioral intervention strategies, education about the disorder, and medication are the most effective ways to treat the disorder. There is no denying the importance of diet and exercise in maintaining a healthy lifestyle. But there is no evidence, at least so far, that diet makes any difference in treating AD/HD.

I plan to dedicate the next couple of blog entries to explaining how we can all become more discerning in evaluating the information we receive. I also plan to discuss the role CHADD plays in disseminating accurate and science-based information. We will discuss the media’s constant need for a new headline, and how this frequently leads to more misinformation. I hope you will continue reading.

Clarke

Food Dye and Behavioral Issues

2008-06-03T16:02:00.004-05:00

by Bryan Goodman

There are stories in the media today about the connection between food dye and behavioral issues. We realize some people may have questions about how food dye affects AD/HD symptoms. CHADD’s position on issues similar to this one is best expressed in the What We Know Sheet #6, published by CHADD’s National Resource Center on AD/HD. That fact sheet reads as follows:

Dietary Treatment/ Nutritional Supplements
Having a healthy, balanced diet is key to having a happy and healthy life. According to the Centers for Disease Control and Prevention (CDC), eating properly can help lower the risk for many chronic diseases, including heart disease. In addition, exercise and physical activity are recommended as part of an overall healthy lifestyle.

For more information on proper nutrition, click here. Dietary guidelines from the U.S. Department of Health and Human Services (DHHS) can be found here.

Dietary treatments eliminate - or take out - one or more foods in someone's diet (for example, sugar, candy and food with red dye). The idea is that being sensitive to certain foods can cause symptoms of AD/HD. Careful research, however, has not supported this treatment.

Nutritional supplements and large doses of vitamins add things that some believe are missing in a diet. Some people think diet supplements improve symptoms of AD/HD. Scientists have found no proof of this idea.

You can read this fact sheet in its entirety here. As always, CHADD encourages individuals to consult a medical professional when making decisions about treatment options for AD/HD.

Bryan Goodman is CHADD's director of communications and media relations and the executive editor of Attention magazine.

Finding Your Own Arena

2008-05-28T11:06:00.009-05:00

by Bruce Jenner

I am thrilled that I will be the keynote speaker this fall at CHADD’s 20th Annual International Conference on AD/HD. I have long been a big supporter of CHADD.

When I was growing up in the 1950s, there was no national organization working to raise awareness about people with different learning styles. Back then children with special needs failed in school, dropped out, or squeaked through with terrible self-esteem.

I struggled early on in elementary school. After going through testing, I was told by school officials that I had dyslexia. (I also struggled a great deal with attention issues, but AD/HD was not on anyone’s radar at the time.) Knowing I had dyslexia did me no good, however, because I was sent back to class with the expectation that I would do well without accommodations.

It should come as no surprise that my troubles in school began to take a toll on my self-esteem. Then something miraculous happened in fifth grade. I participated in a race and won. I was the fastest kid in my class! I had found what I call my “little arena,” and my self-esteem began to improve.

I often tell people that struggling with dyslexia has been my greatest gift. If I had been average, doing fine in school, I wouldn’t have needed sports. There was always that little dyslexic kid in the back of my mind who was going to out work the next guy.

I look forward to talking about my life experiences at CHADD’s conference. My hope is that attendees will hear my story and walk away with a better understanding of how they can build self-esteem by finding their own “little arenas.” I hope to see you there!

Bruce Jenner won the gold medal in the decathlon at the 1976 Summer Olympics. His willingness to talk about his own struggles with a learning disability has helped shape how society views learning disabilities and mental disorders.

CHADD’s International Conference on AD/HD will be held this year from November 12-15 in Anaheim, California. Registration begins in June.

Cardiovascular Monitoring and AD/HD

2008-05-21T10:56:00.008-05:00

Further Thoughts on the Recommendations

by Andrew Adesman, MD

Though the air is starting to clear, the dust has not yet settled on the issue of cardiovascular monitoring of children with AD/HD! What do I mean by this?

On April 23, the American Heart Association issued a statement recommending cardiovascular evaluation and monitoring of children and adolescents being treated with medication for AD/HD. The AHA not only suggested that a careful history and physical examination be done, it also recommended for the first time that all children and adolescents with AD/HD should have an EKG done prior to treatment with stimulant medication.

This recommendation created considerable concern among parents and controversy among professionals. In a blog entry posted on the CHADD website on April 23, I raised several concerns about this recommendation and its implementation. In the weeks following the release of the AHA statement, experts from the fields of pediatrics, child psychiatry, and even pediatric cardiology have raised serious questions about the scientific basis for the AHA’s recommendation to do electrocardiograms in all children and adolescents prior to treatment with medication for AD/HD. These experts not only shared my concerns about the logistical and practical issues of timing, cost, availability, and accuracy of EKGs, they questioned the very rationale for doing EKGs in children for whom there are no known cardiac risk factors. (Note: There is general agreement that children with certain specific clinical cardiac risk factors should have an EKG and/or evaluation by a pediatric cardiologist.)

In response to heated criticism from various medical experts, the AHA modified its recommendation. On May 15, the AHA released a Media Advisory (in conjunction with the American Academy of Pediatrics) to “clarify” its recommendations. Whereas the AHA originally recommended an EKG for all children with AD/HD prior to treatment with medication, they now state that it is “reasonable for a physician to consider obtaining an EKG as part of the evaluation of children being considered for stimulant drug therapy, but this should be at the physician’s judgment, and it is not mandatory to obtain one.... Treatment of a patient with AD/HD should not be withheld because an EKG is not done.”

This revision to the AHA position is a welcome modification and will reduce the sense of obligation that many physicians have been feeling with respect to performing EKGs on their patients. As a developmental pediatrician specializing in the evaluation and management of AD/HD, I can attest to the many logistical difficulties associated with getting EKGs done quickly and the clinical uncertainty that results when EKG findings are not completely normal. (As noted in the original AHA paper, there are many EKG findings that are variants of normal or mildly abnormal but are not clinically concerning from an AD/HD treatment standpoint.)

The AHA recommendations to do universal EKG testing on children with AD/HD prior to treatment with medication would have led to a multitude of false positives (erroneous reports of abnormalities in children) and undue clinical concern as well as a considerable cost and inevitable delay in therapy. It is fortunate for all that the AHA has backed away from its original recommendation.

It is important to note that the American Academy of Pediatrics has not endorsed the AHA statement in either its original form or its revised form. The likely reason for this is that, in their recently published, evidence-based guidelines for evaluation and treatment of children with AD/HD, the AAP did not recommend that EKGs be done in individuals if there are no cardiac concerns or risk factors. In short, whereas the AHA is recommending that an EKG be “considered” for all children with AD/HD prior to treatment, the AAP has thus far recommended that an EKG only be done where there are specific clinical concerns to justify it.

If the AAP stands by its previous recommendations, then its position will be “at odds” with the AHA’s revised statement. Although individual experts and medical organizations can reasonably disagree, there are several unfortunate consequences from such a public difference of opinion. For example, clinicians and patients will not be certain whose recommendations to follow. This will undoubtedly lead to inconsistency among providers regarding EKG screening. It is also quite likely that health insurance companies may chose to not cover the cost of an EKG in low-risk children if the AAP itself does not recommend EKGs for these patients. This would mean that there could be a significant out-of-pocket expense for a test that is recommended by some experts and clinicians but not others.

To the extent that the AHA is making recommendations for EKG screening that go well beyond previous recommendations of the AAP, they may find themselves wanting to “clarify” (i.e., retract) one sentence in their May 15 Media Advisory. In that document, the AHA clearly states that “the child’s physician is the best person to make the assessment about whether there is a need for an EKG.” How ironic! When it comes to determining the need for an EKG in a child with AD/HD, the AHA recognizes pediatricians as being the expert on a case-by-case basis—yet, they reject their collective judgment when it comes to developing generalized, evidence-based guidelines for evaluating and treating children with AD/HD.

Although the AHA policy revisions help to clear the air, I don’t think the dust can start to settle until the AAP makes a public statement about this issue. Until then, clinicians and families will have to pursue safe and effective treatment in the face of imperfect knowledge and conflicting opinions. Despite potential differences of clinical perspective among experts, I think it is important to remember that both the AHA and the AAP recognize stimulant medication as a safe treatment for children with AD/HD who have no risk factors for cardiac problems, and that even children with cardiac risk factors may be considered for treatment with stimulant therapy once an appropriate cardiac evaluation is performed. That is the heart of the matter!

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.

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

2008-04-23T12:58:00.009-05:00

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