Tuesday, July 31, 2007

Together We're Stronger

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

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

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

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

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

Some of the important themes I recall:

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

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

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

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

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


Wednesday, July 25, 2007

Studying Treatment, Educating Congress

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

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

For further information on the study, go to our Web sites—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.


Thursday, July 19, 2007

Improving Treatment and Educating Key Audiences

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

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

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

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

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

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

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

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

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

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

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


Wednesday, July 11, 2007

Share Your Experience with the United States Congress

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

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

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

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

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

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

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


Thursday, July 5, 2007

Summer: School and Camp Options

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

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

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

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

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

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

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

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

Enjoy your summer.