Wednesday, February 28, 2007

Supports: Summer Camps, Consumer Self-Help/Advocacy & Scientific Advancements

Summer Camp Award
For the second consecutive year, we are able to offer four awards of up to $8,000 each to help alleviate the cost of attendance at specialty summer camps for children with special needs. My son Andrew attended a summer camp for special kids for three years. He greatly enjoyed the experience and social opportunities, which he rarely experienced in our community. This included engaging in enjoyable activities with other kids his age and learning independent living skills.

CHADD is delighted to offer four children this opportunity. Applications are due March 7. The application form is available from A committee of five uncompensated volunteers selected by the CHADD board of directors reviews all applications and makes selections. This is a core component of voluntary health agencies and consumer self-help groups--uncompensated volunteers whose family situations are similar to the applicants doing the hard work on their spare time. It is a value that makes America great.

Consumer Self-Help/Advocacy
A national membership marketing expert with extensive experience working with non-profit organizations recently questioned me about why I characterized CHADD as a consumer self-help and consumer advocacy agency.

For the last decade or more, in the mental health field, persons who “consume” mental health services (adults with mental disorders, their families, and families with children with mental disorders) have referred to themselves as “consumers.” [See the President’s New Freedom Commission on Mental Health report for a discussion of the need to “transform” the entire mental health system to one that is “consumer and family driven.”]

CHADD is not a “health organization” per se, although we are a member of the National Health Council as a “voluntary health agency” (VHA). A VHA is one that is dedicated to a health issue or condition, is governed by an uncompensated volunteer board of directors, and receives support from the public through memberships and donations. Within the President’s Commission concept, CHADD is a “consumer-advocacy and consumer-self-help” group. We do not provide health services. We provide consumer advocacy and consumer-support by building a social movement to support all persons with AD/HD and related disorders.

Neuroscience and AD/HD
A recent issue of the journal Neurology published a National Institute of Neurological Disease and Stroke (NINDS) article on prevalence of neurological illness. Included in the study were autism spectrum disorders, Tourette Syndrome, and seizure disorders, including epilepsy. A CHADD member wrote me asking why AD/HD was not included in the study. As the father of a son with the inattentive form of AD/HD, high functioning autism, and a history of seizures between the ages of 2 to 7, I wondered the same thing. I wrote the Director of the National Institute of Mental Health (NIMH) seeking guidance on this question. Within two days the NIMH director replied.

His letter was very insightful. The traditional boundaries of science between psychiatry and neurology are diminishing as the focus now is on diseases and disorders that “involve abnormal brain activity." NIMH and NINDS "have a long-standing relationship of cooperation and collaboration" and I was told that the National Institutes of Health (NIH) "brain-related Institutes," led by NIMH and NINDS, are currently engaged in a collaboration named the "Neuroscience Blueprint." The relationship of the brain and nervous system is an exciting area of current research. The 2007 priority is "neurodegeneration," the 2008 priority is "neurodevelopment," and the 2009 priority is "neuroplasticity." I can't wait to hear the research results of the work on neurodevelopment (in several years). Each year the science tells us more and more.

Meantime, while the NIH, the world's foremost institution of science, is collaborating on new research to better understand the brain and the nervous system, I continue to receive routine rantings from a physician who preaches that "ADHD is a 100% fraud," that we are "drugging normal children" because AD/HD, bipolar disorder, and other disorders of the brain "don't exist," and that these disorders are "manufactured and invented diseases." Having spent 16 years helping my son overcome his struggles and having worked for years with families dealing with mental and physical disabilities through three national family support organizations, I can to tell you that it is hogwash to say that there is nothing wrong with these children except that they should be “disciplined” and/or put on a “better diet.” Life is hard-enough dealing with my son’s emotions, my emotions, my family's emotions, and the emotions of thousands of CHADD families as we search for meaningful help. The media seems to delight in giving equal time and attention to the institutions of science and the rants of denial. CHADD’s National AD/HD Education Initiative and our CDC recognized and funded National Resource Center on AD/HD will continue to share science based information with the public and our members.

May we find strength, patience, and peace of mind through professional, social, family and natural supports as we struggle with our daily challenges. I sincerely believe that each year the science helps us understand more and more about the brain. And we get better at applying the science to better dealing with these struggles. Thanks to the many scientists who devote their careers to enhancing our knowledge. Part of CHADD’s social movement advocacy is to increase the science and translate it into practice.


Wednesday, February 21, 2007

Fail First, Medication Safety, Social Challenges

Fail First
This past weekend my wife and I participated in a parents’ retreat at our son’s high school. His school’s focus is on learning challenges for kids with significant social challenges. There are lots of kids with AD/HD and high functioning autism spectrum disorders at this school. The retreat was like an extended CHADD support group meeting-–focused on a half dozen important areas with experts and a lot of sharing and some tears.

One of the things all the families and their children had in common was that we were victims of a public educational “fail-first” approach. We each came to this school because the public school either completely failed our children or the school’s interventions were too little, too late. At least we found a learning environment where our kids are happy, academically successful, and learning good social skills. But it is such a societal shame that the educational system is designed to allow children to fail before anything can be done to help them.

CHADD is fighting against another fail-first policy dictated by many health plans. There are health-plan policies that will not pay for medications that effectively treat an individual’s AD/HD until that person has tried and failed to see any results on the plan’s medication of choice. We know from the Surgeon General's Report on Mental Health, that stimulant medications are highly effective for 75 percent to 90 percent of children. But the reverse is that the medication either has no effect or has significant side effects in roughly 10 percent to 25 percent of children.

Why do we allow health plans to institutionalize failure with 10 percent to 25 percent of persons with AD/HD? Think about it – we have designed a system that, in order to save a few dollars, puts persons with special health care needs at risk of failure before allowing a prescribing physician and the individuals or their family to use an FDA-approved medication of their choice.

FDA Announces Medication Safety Warning for AD/HD Medications
On February 21, the FDA announced that all manufacturers of medications to treat AD/HD must develop “Patient Medication Guides” to alert patients and their families to possible cardiovascular risks and risks of adverse psychiatric symptoms associated with the medicines.

What a quandary for adults with AD/HD and their families. Each family must weigh the benefits and risks in making decisions about medications. For most individuals with a correctly diagnosed condition of AD/HD, we know that medications, in combination with “multimodal treatment,” help reduce the symptoms of AD/HD and enhance functioning in everyday life. We also know the negative consequences of untreated AD/HD. But we have to recognize that for some individuals the side-effects may be negative.

We all must make these decisions based on our comfort level and in consultation with prescribing medical professionals. It is the obligation of each person with AD/HD, their family members, and prescribing professionals to closely monitor and report any changes in their wellbeing to reinforce the benefits and guard against the negatives. My 16-year-old son is fortunate in that he has been on AD/HD medications since he was 7 years old and has no health problems. But everyone has to make his or her own decision and be closely attuned to negative consequences.

One disturbing side-effect of the FDA announcement is that the “anti-psychiatry” crowd (those who deny the existence of childhood and other mental disorders) and the anti-pharmaceutical crowd (those who argue that medication is merely a marketing ploy to sell drugs for made-up problems) will widely use the FDA announcement to scare people against getting a medical assessment for AD/HD and related disorders and to scare people against using medications. Again, each of us needs to make informed decisions with our prescribing medical professional about the risks and benefits of using medication. I wish you success in making these difficult decisions.

The Importance of Social Skills
At our parents’ retreat, we learned that “the overwhelming majority of students with special needs fail at jobs because of a lack of effective interpersonal skills and/or social competencies.” While everyone needs academic proficiency to get a job, it is an individual’s social skills that will determine their tenure and success on the job. The school my son attends focuses on social skill development, positive social experiences, and promoting independence through personal responsibility.

We learned that poor language skills and poor or limited understanding of social cues in interpersonal communication contributes to problems in the workplace. We also learned that not understanding instructions, not attending well to tasks, and an inadequate sense of time contribute to job failure. We need to strive to find supports for ourselves and our loved ones to enhance their skills in a world full of demands, pressures, and fail-first policies.

May you find the support, patience, and peace that will help you succeed first and always!


Thursday, February 15, 2007

Adults with AD/HD, Social Relationships, and New Supports

This week I am proud to announce that the National Resource Center on AD/HD (NRC), a program of CHADD recognized and funded by the Centers for Disease Control and Prevention (CDC), has issued a new electronic newsletter for CHADD members a well as those who have sought assistance from the NRC. And the public will soon be able to sign up for the newsletter on both the NRC and CHADD Web sites.

In recognition of Valentine's Day, the lead story is "Adult Social Relationships: Tips for Success." This article is also available in Spanish, adhering to our practice of providing access to persons whose primary language is Spanish.

While CHADD was founded in 1987 as Children with ADD, we have evolved into Children and Adults with AD/HD. We are striving to be an advocate and supporter for adults with AD/HD and related disorders. Eleven of the NRC 21 “What We Know” papers, developed by the consensus of the CHADD Professional Advisory Board, are dedicated to topics for adults with AD/HD. Our revised Web site has a new feature, Online Communities. While most of these are a member benefit, we have several communities for adults (For Men Only, For Women Only, New to AD/HD, etc). Most issues of ATTENTION!® magazine have articles dedicated to adults with AD/HD, and an increasing number of CHADD support groups across the nation focus on adults. Our public policy advocacy work targets an adult agenda - health insurance, employment supports, and disability benefits. As I mentioned in my entry last week, we are developing funding proposals to enhance our support for adults in the area of employment.

Social Relationships
While the lead article in the NRC Newsletter is on adult social relations, there is also an article on "The Social Skills Challenge for Children with AD/HD." My 16-year-old son has several co-occurring challenges, including high functioning autism and the inattentive form of AD/HD, but it is the problems that have stemmed from his social relations that have been the saddest.

I remember Andrew in kindergarten without a single friend and seated next to a bully. It took us several months to recognize this and to convince the teacher to move Andrew to another location in the classroom. Fortunately, in a summer program the next year, Andrew made a friend who remains his best friend. Andrew's second best friend is a boy a year younger than Andrew who he met at church in his first few years of elementary school. His social circle, through church and community basketball, has grown larger, but it is these two long-term friends who are truly special to my son.

Last year, Andrew entered a public high school with 2,000 students. He never saw his best friend, who was in a different "track" and his second good friend did not attend this school. Immediately Andrew was socially isolated. He never developed a friend. He was extremely depressed and angry. It took a few months before the school authorities, despite his having an individual education plan (IEP), interceded to help. By then, it was too late. Our efforts to work with a psychologist specializing in social dynamics with teen groups was too little, too late. Andrew lost his natural smile and sense of humor. This was the saddest that I, as his Dad, have ever been. This year we changed schools (another story for another day) and, as a result, Andrew now has the best network of social supports and friends in his life. Thankfully, his smile and sense of humor have returned. He is once again socially engaged and happy. He is even developing friendships with two girls. All of this in a small school that prioritizes developing social skills, opportunities, and supports, while providing quality education.

I encourage you to access the NRC Newsletter and read the articles on social relationships for adults and children. To me, one of the greatest challenges and areas of support are social relationships.


Thursday, February 8, 2007

Professional & Natural Supports

This week, President Bush delivered his proposed budget to the Congress of the United States. The good news for persons with AD/HD and CHADD is that he proposed renewed funding for the National Resource Center on AD/HD (NRC), which is funded by the Centers for Disease Control and Prevention (CDC). [Some bad news will be discussed in a moment.]

Employment Issues Facing Adults with AD/HD

Published research and a survey responded to by almost 1,400 adult members of CHADD who have AD/HD affirm that employment is a major concern. Many adults with AD/HD and other disorders frequently change jobs and never advance in a career ladder as they are moving to another entry-level position.

I am pleased to report that CHADD submitted a grant application to the U.S. Center for Mental Health Services (CMHS), a federal government agency, to be a Consumer-Supporter Technical Assistance Center with a focus on employment for younger adults, including those whose primary language is Spanish.

We have put together a consortium partnership of CHADD, Autism Society of America, Child and Adolescent Bipolar Foundation, and Tourette Syndrome Society in an effort to address a wider continuum of mental disorders in adults (a requirement of the grant). Our strategy would be enhanced by a significant subcontract with the National Latino Behavioral Health Association to work with the Spanish-speaking population. All project materials would also be translated into Spanish. It is a personal priority of mine to increase our involvement with the African-American and Hispanic/Latino communities as we build a social movement to better support persons with AD/HD and their families.

Our project design: placement in the CHADD office of a full-time employment specialist to handle inquiries, modeled on our health information specialists in the NRC. The project would hire an employment specialist to work in two states (a CMHS requirement), to be selected by CMHS, to provide face-to-face supports to groups working in the area of employment supports. The project would have its own dedicated web site.

Now the bad news. President Bush's proposed budget would reduce the CMHS agency budget by $76 million, including elimination of programs to directly support consumers and families, including the Consumer and Consumer-Supporter TA centers. CHADD will be working with sister national mental health associations to restore this funding.

Medication Safety and the FDA

We are all concerned with medication safety. According to the Surgeon General's Report on Mental Health, stimulant medications are highly effective for 75-to-90% of children. But the reverse is that the medication either has no effect or has significant side effects in roughly 10-to-25% of children. Each family must weigh the benefits and risks in making medication decisions. The question of the results of not treating a disorder must also be considered. These decisions must be made given our comfort level and in consultation with prescribing medical professionals.

In my family’s experience, a psychiatrist recommended stimulant medication for our son, Andrew, when he was five-years old. We were not ready to have our five-year-old son on medications. By the time he was seven, with other interventions not working, we tried medications. These have been very effective for Andrew, who is now 16. The published research recommends what researchers call "multimodal treatment." On our NRC web site, we post every Food and Drug Administration (FDA) safety and approval decision related to medications to treat AD/HD, as well as our Professional Advisory Board consensus papers on assessment and treatment.

CHADD is a member of the National Health Council, founded in 1920. Forty-nine voluntary health agencies, including CHADD, are NHC members. Last week the Council held a briefing on Congressional proposals to enhance the safety of medications. At the briefing, we were told that the United States Senate will likely pass FDA legislation this year and that it will include at least four Core Elements. Those elements are:

1. Mandatory Labeling Authority
2. Public registration for clinical trials
3. Public data base for results of clinical trials (includes adverse events)
4. Mandatory post market studies of medications (includes adverse events)

These four items are all intended to enhance the role of the FDA in promoting and ensuring medication safety.

Faith Communities and School Teachers

The response to last week's blog centered on communities of faith not being open to persons with special needs. This is so sad, that God's house may not be open and accepting to those in need. As one person commented, "It is hard to have our kids fit in and be accepted. We struggle with this." While CHADD does not endorse organizations, products, or services, there are faith-based Web sites that offer assistance and networking for persons with special needs. Two of these are and

One of the comments to my blog last week questioned teacher recognition and accommodations. I suggest you contact our information specialists at our NRC/ADHD and ask your questions. They may be able to provide some useful information.

Together, we can further CHADD's mission to improve the lives of persons with AD/HD and related disorders. Together, we can build a social movement that recognizes and supports persons with AD/HD.