Organizing a Local Town Hall Meeting to Help the State Legislature

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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