Wednesday, April 25, 2007

Diversity and Outreach

Last week a CHADD volunteer questioned CHADD's outreach to underserved communities. We both agreed that AD/HD impacts all persons regardless of background, race, and culture, and that CHADD has a mission to make accurate information available to all. The volunteer disagreed with how CHADD’s national board of directors and I have set out to accomplish this goal.

In August 2001, the Surgeon General issued a report, Mental Health: Culture, Race and Ethnicity, as a supplement to Mental Health: A Report of the Surgeon General. In July 2003, the President's New Freedom Commission on Mental Health issued its report, Achieving the Promise: Transforming Mental Health Care in America. Both reports document the disparities in accessing science-based health, education, and social information and supports across racial and cultural groups.

To meet CHADD's objective of building a nationwide social movement to assist all persons with AD/HD and related disorders, we have organized and conducted 17 community forums targeted to the African-American and Hispanic/Latino communities. We have partnered with the National Medical Association , National Latino Behavioral Health Association (NLBHA), National Alliance for Hispanic Health (HHNA), Delta Sigma Theta Sorority , the Congressional Black Caucus (CBC) , the Congressional Hispanic Caucus (CHC), Black Mental Health Alliance of Baltimore (BMHA), and the National Alliance on Mental Illness (NAMI) Multicultural Partner Coalition to bring science-based information on AD/HD to these communities. We constantly strive to translate our materials into Spanish.

We have listened. We have developed activities of outreach with respect. I am personally committed to making CHADD an effective partner and ally of those assisting persons with AD/HD and related disorders in our society as a whole. Given our history and limited resources, we support local programs that naturally develop and grow and we currently prioritize work with the African-American and Hispanic/Latino communities. We are unable to effectively outreach to all groups in society. This is a journey—a lifetime journey—to build trust, respect, and help. It is a respectful, planned, and sustained effort, relying on partners, to be helpful. It is a strategic priority of CHADD’s national board of directors.


Thursday, April 19, 2007

Crises, Prevention and Health Promotion

Dealing with Crisis
The mass shootings at Virginia Tech again focus us on crises (and nightmares). CHADD expresses its deepest sympathies to the classmates, families, friends, university employees, and the greater community. Each of us turns to different natural supports—family, community, faith community—in locating places and people to help us mourn and cope. Our prayers are with the Blacksburg community.

Mental Health America, our sister association, issued thoughtful statements on the shootings: Virginia Tech Tragedy: Tips for Educators, Students and Parents. I refer you to these helpful documents, or you can call MHA at 800-969-6642 for more information.

I appreciated the comments Virginia Governor Tim Kaine made on CNN at 5:30 pm on Tuesday, April 17, in response to the already numerous policy and practice declarations by self-appointed experts. He said, "Take the crusade elsewhere and let us help Virginia Tech grieve." Why is it that as soon as a crisis hits, some have to declare their immediate understanding of why and what to do about it?

Shortly after hearing Gov. Kaine's observations I went to the Web site of the leading anti-psychiatry group. They had already posted a press release stating that the shooter “May Be 9th School Shooter Under the Influence of Psychiatric Drugs." It is so sad that in this time of mourning, we have the anti-psychiatry crusade declaring their monopoly on truth. In my church, mourning and bereavement take precedence over immediate press releases and posturing.

Prevention and Health Promotion
Last Friday, Tim MacGeorge, the director of the National Resource Center on AD/HD at CHADD and I attended the second annual open house at the headquarters of the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD). CHADD's NRC is recognized and financed by CDC's NCBDDD. The mission of NCBDDD is to promote the health of babies, children, and adults and to enhance the potential for full productive living by all persons with challenges associated with disabilities. It is a pleasure to see a professionally trained work force attempting to increase the science and to translate the science into everyday practice.

The partnership between CHADD and the CDC promotes CHADD's mission to assist persons with AD/HD and related disorders. One of the current NCBDDD priorities is a campaign with the slogan, "Learn the Signs, Act Early." To date, CDC has done a good job of identifying the signs that possibly warrant responses, but they are still working on how to take meaningful action. We all have in common the effort to improve individual functioning and long-term outcomes for people with challenges in their lives.

"Science is the foundation that CDC is built on," one of the CDC officials stated. Their purpose is to take the science and promote healthy people and healthy places. CHADD is also science based. Our professional advisory board reaches consensus on what the published science states. This has led to some criticism of CHADD, as people of strong views and personal experience promote practices that are not grounded in the published science and accuse CHADD of being too inflexible. There is some truth to this description. But it quickly gets to be a slippery slope when practices not grounded in the published science are promoted.

We are trying to be more open, more understanding, and more flexible, while staying grounded in the published science. But sometimes we may not get the balance exactly correct. We use consensus decision-making, based on the published science expanded by the lived experience of consumers and their family members. We strive daily to be helpful and to get this balance right.

Ty and Yvonne Pennington at Conference
Looking ahead to CHADD's Annual International Conference, which will take place November 7-10, I am pleased to announce that Yvonne Pennington, mother of that lovable hunk-of-a-carpenter Ty Pennington, star of Extreme Makeover Home Edition and winner of two Emmys for outstanding reality programs, will talk about raising Ty and his brother in her presentation, Raising Amazing Kids. She will also accept the Ty Pennington Humanitarian Award at the 20th Anniversary Gala.


Wednesday, April 11, 2007

A Powerful and Needed Alliance

What a Difference a Year Makes
My wife and I had a wonderful Easter with our 16-year-old son. This time last year, my son was socially isolated at his 2,000-student high school, on the verge of academic failure, so depressed over his situation that he did not want to see his two longtime friends on weekends, disinterested, and defiant and angry at home. He had lost his natural smile and our entire family was in crisis. This year, it has all changed, after we moved Andrew to a small high school that specializes in meeting the needs of kids with special learning challenges. This school has a student body of 75, half boys and half girls. Andrew has a group of friends to hang out with. He is learning to socialize with girls. He is passing all his classes. Like every child at this school, he is playing team sports, which he loves. He is fun to be with and he enjoys being with his family. And his natural smile and sense of humor have returned.

To me, this says we have to appreciate each positive moment, and when things are going poorly, if we take planned and careful action to change the circumstances, there may be good things later on. We greatly appreciate this moment. It could all fall apart tomorrow, although we believe that we are moving forward and should not return to where we were at last year. We are reasonably confident about the future, but we know many challenges remain. We never know the circumstances we will face, and each of us uses different strategies to cope. I wish you Godspeed as your circumstances change, hopefully for the better.

Dealing with Schools
At a parents' retreat at my son's school last month, several parents were in tears describing how many school employees, at the large public high schools their children previously attended, just don't understand the emotional toil children and families go through. We recognize that school employees can't get too involved in every child's situation, particularly in schools with large student bodies, but we do have great frustrations.

A CHADD chapter coordinator wrote us last week about her experience with her child's school. She wrote: "The meeting at [my daughter’s] school did not go well yesterday. I left there really frustrated after about only 20 minutes, [which was all the time] that they had planned to give me. Not all of my issues were addressed....I just want to make them aware of the fact that I am watching everything they do." Watching is unlikely to be enough.

Our upcoming annual conference has a one-day track for teachers, "Teachers as Allies," a philosophy expressed by a National Alliance on Mental Illness (NAMI) publication. CHADD has been a wonderful advocate for the legal rights of kids with special needs. CHADD community support groups provide safe places where parents (and kids) can share their frustrations and experiences in dealing with schools. Sometimes teachers are part of these support groups. In a few model programs, CHADD chapters have become learning allies with teachers and school officials to improve education for children with special needs. Last fall we published the CHADD Educator's Manual, a guide mailed to every public school in America. The manual was written from a teacher’s perspective, to help teachers. We strive to be a resource and a help to school officials and teachers.

But we also need to motivate teachers and school officials to be more understanding and responsive to the emotions of kids and their families. Life can be so difficult, and an unresponsive and non-communicative teacher really adds to the burden of the child and family. An understanding and responsive teacher can make such a difference.

Anniversary Gala Dinner
This year marks CHADD's 20th anniversary. Part of our celebration will be a gala dinner event during our annual conference. The conference will be held November 7-10 and the gala dinner is November 8. The conference will be at the Hyatt Regency Crystal City in Virginia, just across the river from Washington, DC. We have an exciting program planned with a speaker lineup that includes leading national legislators and most of the CHADD Hall of Fame recipients.

I will be keeping blog readers informed regarding special speakers and conference participants. I hope that you can join us at conference. You can learn more and sign up to receive updates about the event through CHADD’s Web site. Registration begins in June.


Monday, April 2, 2007

Organizational Purposes and Priorities

Meeting with Our Board
The CHADD national board of directors met for two and a half days last week to outline the organization’s priorities for 2007-2008. Before and after the board meeting, the annual conference workgroup met to continue planning the November 7-10, 2007 annual conference. This year’s conference will be held in the Washington, DC area at the Hyatt Regency Crystal City, near Reagan National Airport in Arlington County, Virginia.

This is the essence of non-profit voluntary health agencies in America. Uncompensated volunteers, who represent a cross-section of Americans, work significant hours to plan, govern, and oversee a national association’s work. This particular board and this particular staff have a very positive, respectful, and productive relationship. We enjoy each other.

Updated Purposes
The board spent time updating the association’s by-laws. In doing this, the board expanded the purposes of CHADD, which are:
1. To maintain support groups for parents, family members, and other caregivers of children with attention-deficit/hyperactivity disorder (AD/HD) and related disorders, and adults with AD/HD and related disorders.
2. To provide a forum for continuing education about AD/HD for parents, family members, and other caregivers of children with AD/HD and related disorders, adults with AD/HD and related disorders, and health professionals.
3. To serve as a resource for science-based information on AD/HD.
4. To serve as an advocate for persons with AD/HD and related disorders.
5. To encourage discussion, dialogue, and understanding among persons in the community who have an interest in AD/HD, such as educators, health professionals, public officials, parents of children with AD/HD and related disorders, and adults with AD/HD and related disorders.
6. To foster the objective that the best educational experiences should be available to children with AD/HD and related disorders, so their specific difficulties will be recognized and appropriately responded to within educational settings.
7. To engage in activities intended to fulfill the stated mission of CHADD, which is to improve the lives of people affected by AD/HD and related disorders.
8. To build a social movement to promote the welfare of all persons with AD/HD and related disorders.
9. To work toward the elimination of stigma, discrimination, and barriers to the diagnosis and treatment of AD/HD and related disorders through the lifespan.
10. To advocate for increased research funding to better understand, prevent, and treat AD/HD and related disorders through the lifespan.

Living up to these lofty goals is always difficult. In addition to the CHADD volunteer board, their committees and work groups, and the staff, hundreds of uncompensated volunteers across America work every day to assist people with AD/HD and related disorders. These volunteers work in the CHADD chapters and support groups and work as certified teachers of the seven-session Parent to Parent: Living with AD/HD intensive training program. We know that we need to better support and better recognize their efforts.

Strategic Priorities
To achieve the purpose of CHADD within a 12-month budget, the board also adopted the following strategic priorities.

Priority One: To provide information to and services for people affected by AD/HD, we will strive to
• Develop and implement a membership plan that addresses the defined needs of CHADD’s target audiences
• Develop a plan to implement recommendations from an outside consultant for developing a branding strategy for CHADD
• Promote diversity and cultural competence and integrate them into all of CHADD’s major functions
• Use CHADD publications strategically to provide a support network for parents, caregivers, and adults with AD/HD
• Enhance and promote the CHADD annual conference using the 20th anniversary celebration
• Increase the number of support groups available to CHADD members and strengthen existing CHADD community groups
• Provide education and training for people affected by AD/HD
• Increase subsidies available to support persons unable to pay CHADD membership fees

Priority Two: To increase public awareness, understanding, and acceptance of AD/HD, we will strive to
• Serve as a resource for accurate, evidence-based information, through such vehicles as the National Resource Center on AD/HD and the National AD/HD Education Initiative
• Disseminate and increase information about AD/HD to target audiences
• Focus on CHADD’s Web presence by integrating more effectively the CHADD/NRC Web sites, and adding more content to the CHADD Web site, while increasing consistency of appearance between its sections
• Increase name recognition and visibility of the organization

Priority Three: To influence national, state, and local public policies to build a social movement to assist persons with AD/HD, we will strive to
• Maintain funding for the National Resource Center on AD/HD
• Enhance CHADD involvement in state and local public-policy work
• Implement the adult and child public-policy agendas
• Develop a plan for increased federal funding of research to better understand, prevent, and treat AD/HD and related disorders

Listening to Our Members
CHADD was fortunate enough to have contracted with a leading membership and marketing consultant to randomly survey CHADD members to determine member priorities in joining CHADD. The consultant terms this research “determining the value of a CHADD membership.”

What did we learn? We learned that CHADD members highly value a CHADD that delivers
• Science-based information about AD/HD
• Advocacy activities that promote the interests and welfare of persons with AD/HD
• Advocacy activities that support research into the understanding, prevention, and treatment of AD/HD
• Local community support for dealing with their daily struggles and local opportunities to discuss and share experiences
• Greater resources for members on the Internet and Web

An Ambitious but Achievable Agenda
Like most organizations, we do some of this; some of this well, some of this poorly, and some we don’t do much of. We have limited resources, limited staff, limited volunteers, and limited community resources. We collectively try our best. We constantly plan and implement improvements and enhancements. We use the management principles of management by objective and continuous quality improvement.

We need to hear from our members, potential and prospective members, and people who are interested in AD/HD but don’t want to be our members. CHADD is building a social movement to assist all persons with AD/HD. We can better do this with more members and more donors. But we are here to help as best as we can. As the father of a sixteen-year-old son with the inattentive form of AD/HD and related challenges, I know we need organizations like CHADD to work each day to assist us. CHADD has hundreds of volunteers and a staff dedicated to providing this support.