Studying Treatment, Educating Congress

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

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

For further information on the study, go to our Web sites—www.chadd.org for the complete statement from CHADD, and www.help4adhd.org for the NIMH statement. The study is published in the August issue of the Journal of the American Academy of Child and Adolescent Psychiatry.


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

Last week, our Director of Public Policy, Paul Seifert, wrote all CHADD members with e-mail addresses, explaining our plans to visit the U.S. Congress. We encourage anyone interested in AD/HD to participate in this public education event. Here is what Paul wrote:

Now, we know the thought of meeting with your U.S. Representatives and Senators can be, well, a little daunting…so we’re making it as easy as…taking a walk! And of course you have questions—we have answers!

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

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

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

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

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

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

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

Hmmm…okay, well, that sounds easy enough.

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

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

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

I hope to see you in Washington in November.

Clarke

Improving Treatment and Educating Key Audiences

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

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

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

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

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

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

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

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

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

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

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

Clarke

Share Your Experience with the United States Congress

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

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

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

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

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

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

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

Clarke

Summer: School and Camp Options

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

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

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

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

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

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

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

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

Enjoy your summer.

Clarke

Communicating--with Doctors and Other Treatment Professionals

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

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

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

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

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

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

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

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

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

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

Clarke

Educating the Media

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

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

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

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

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

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

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

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

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

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

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

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

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

Clarke

A Very Special Conference

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

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

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

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

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

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

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

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

The social movement continues!

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

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

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

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

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

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

Clarke