Media Frenzy
An interesting situation occurred this past week involving the anti-psychiatry groups (those who deny the existence of mental illness and mental disorders). A British newspaper reported that Dr. Robert Spitzer of Columbia University, chairman of the task force that created the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), supposedly stated that between 20 and 30 percent of persons with AD/HD may have an incorrect diagnosis. News outlets around the globe repeated the supposed statement. The anti-psychiatry groups claimed that this affirms that AD/HD is a "fraud," that it is a "made-up" diagnosis, and that medication treatment for AD/HD leads to "dependency on toxic drugs" and "cardiac death." (The only factual statement in these declarations is that for persons with cardiac problems, stimulant medications may create serious side effects. One needs to discuss this possibility with one's physician and other prescribing medical professionals.)
Now the really interesting development: Media Watch reported that Dr. Spitzer never said this (see the story titled "Fact Deficit Disorder"). Dr. Spitzer was speaking to the British reporter about adult anxiety disorders, not AD/HD. And he never used the figure 20 to 30 percent; rather, the reporter used the 20 to 30 percent figure in Dr. Spitzer's presence. Most of the anti-psychiatry crowd has remained silent on what Dr. Spitzer actually said. One anti-psychiatry group stated that they merely used the British press report—and besides, maybe adult anxiety disorders don't exist, and these folks may be prescribed "psychotropic drugs with no justification."
This reinforces for me the need for people facing possible AD/HD in their families to dialogue with medical professionals who practice evidence-based AD/HD diagnosis and treatment guidelines, such as those used by the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry. There are side effects, some serious for some people, with medications used to treat AD/HD. Previous CHADD CEO blogs have addressed some of these dilemmas and science-based conclusions, such as the Surgeon General's Report on Mental Health. Potential users of these medications need to research the medications on the U.S. Food and Drug Administration Web site, and related Web sites such as the National Institute of Mental Health, and the Centers for Disease Control and Prevention.
It also teaches me the lesson of not being sucked in by media hype spurred by anti-psychiatry media machines. These are serious challenges for many people. These are serious decisions by all families. The science tells us that multimodal treatment works for between 75 and 90 percent of children with AD/HD. Rely on your medical professional, assuming you have confidence that they practice evidence-based medicine, and don't get wrapped up in media frenzies.
Insurance Policy Established by Perceptions
Last week we received a complaint from a physician whose health plan had denied an adult patient with AD/HD medication on the basis that the patient was not a child. This is a decision based on perceptions from a decade ago that AD/HD disappears at some magical adolescent age. This perception does not recognize the evidence that AD/HD is a life-span disorder and continues into adulthood for many, but not all, people with the diagnosis in childhood. I wrote the health plan and encouraged its medical advisory panel to examine the National Resource Center's "What We Know" information sheets on adult issues (papers 9 and 10). An effective approach to changing health plan benefit programs is frequently a discussion of the science with the plan's medical advisory board. Before going to health insurance regulations, legislators, professional societies, and the media, CHADD hopes a discussion of the science with the plan will change benefit design. I won't reveal the health plan until our efforts to discuss the science have concluded. This usually takes months of discussion. If unsuccessful, we will engage in direct public advocacy efforts.
If you experience health plan discrimination, please let us know.
Coming Soon—Comedy Movie on Suicide
CHADD has joined with the Suicide Prevention Action Network (SPAN USA) and 14 other national mental health associations, in writing Liongate Entertainment Corporation and After Dark Films to object to their planned marketing campaign showing graphic depictions of suicide to advertise their forthcoming movie, Wristcutters. One of the most devastating occasions of my life was when my best man's wife, an active member of our church, concluded that her depression was so grave and prolonged that she gave up the will to live, and committed suicide. I try not to think about this, for when I do I become very upset. I have known this couple since 1973. This is not a comedy. This is not behavior to encourage. This is perception at its worst, with the most serious consequences.
This week has been a difficult one for me, dealing with public perceptions that undermine the health and welfare of persons with difficult challenges. CHADD is here to build a social movement to articulate and defend the needs of persons with AD/HD and related disorders. Thanks for listening. Thanks for supporting our efforts.
Clarke
Tuesday, March 27, 2007
Wednesday, March 21, 2007
Dealing with Attitudes
A recent professional journal article reported on a study that asked a random sample of parents about their attitudes toward their children playing with children who had symptoms of asthma, AD/HD, depression, and “normal troubles.” The interviewers, sociologists at Indiana University, did not use diagnostic labels with the parents they interviewed and instead used descriptive vignettes. A summary of the article is available from the free electronic newsletter, Attention Research Update, by Duke University faculty member David Rabiner, Ph.D. (to subscribe, go to www.helpforadd.com). The article, “The Construction of Fear: Americans’ Preferences for Social Distance from Children and Adolescents with Mental Health Problems,” by Jack K. Martin and colleagues, originally appeared in the March 2007 issue of the Journal of Health and Social Behavior (Volume 48, pages 50-67).
Out of 1,393 parents, 30% stated that they would not want their children to become friends with a child with depression, and 25% stated that they would not want their children to become friends with a child with AD/HD. Only 10% expressed such views about children with asthma and 5% about children with “normal troubles.” The core message is that some parents do not want their children spending time with children who have these challenges. The researchers conclude that “a substantial minority of American adults are reluctant to interact with or to have their children interact with children described in ways consistent with ADHD or depression.”
My personal experiences with our now 16-year-old son, Andrew, are really not a problem with parental attitudes. Parents in our community seemed to have no problems with Andrew playing with their sons. Parents were generally open and receptive. The problem was that Andrew’s interests and abilities generally did not match those of the other boys, and thus Andrew became lonely. Scouts, community sports, and church were arenas where Andrew could participate with other children. He was still different and still not an equal peer, but with some exceptions, he was treated decently. There are always the boys who say harsh and unkind things. There are also enough boys with special needs in our community so that Andrew developed a handful of friends with whom he was comfortable. Parents of kids with special needs organized special outings and gatherings so their children could have regular and normal fun.
The Microsoft dictionary defines “stigma” as “shame and disgrace attached to something regarded as socially unacceptable.” Stigma leads to loss of self-esteem, internalization of negative self-images, anxiety, and social isolation. Andrew has experienced all of these growing up, but I don’t attribute them to parental attitudes in our community. I attribute them to his “differentness” and how regular boys think and act. Of course, when a kid told Andrew at soccer practice, “Andrew, you stink; why don’t you go home,” and his dad was standing there, I did wish his dad had said that was no way to act. But I also did not comment to the father about his son’s comment.
We each have to determine our own comfort level with attitudes about disabilities and how to deal with them. My wife and I have tried to be honest with everyone. Neither of us is assertive with other parents. Church, scouts, and community sports have presented positive opportunities for Andrew to be accepted and integrated into regular activities.
Social rejection is a highly painful life experience for the child and the family. Support groups, such as CHADD support groups, can be helpful coping mechanisms.
An Update About Baseball
Andrew and I just returned from our first baseball spring training experience in Florida – six games in six days. Andrew’s highlights were meeting with Cincinnati Reds player Jeff Conine and attending an autograph session with Boston Red Sox players. One of Jeff’s sons has AD/HD and the Conine family was featured as the cover story in the October 2006 issue of Attention!® magazine. Andrew has matured a lot since he entered his new school this year. He was a good traveling partner and we have grown much closer. Life, of course, always throws “curve balls.” I severely sprained my lower back and Andrew came down with shingles, thus delaying his return to school. But we have to be flexible and adaptable in life. The memory of six games in six days as father and son will be with us for a lifetime.
Blog Comments
Three comments were submitted in response to my last blog. One was the relationship of sleep disorders to AD/HD. Our National Resource Center on AD/HD “What We Know” papers discuss these issues in passing, but we do not yet have a dedicated paper on this topic. We know that sleep problems are a side effect of some AD/HD medications. We know that sleep disorders can sometimes cause symptoms of AD/HD. The CHADD professional advisory board will be developing a clearer and separate statement on this problem. We will also be consulting with the National Sleep Foundation.
Comments continue coming in about the role of faith communities and churches in dealing with folks with special needs. A parent wrote: “Make sure your child is getting all the interventions necessary” to help in these situations.
One commentator raised questions about a medical doctor’s prescribing recommendations. When you are in doubt about a recommendation, first ask the doctor questions. If you are still unsatisfied, second and third opinions must be sought. These are difficult and challenging decisions. You need to know what the Food and Drug Administration recommends. You need to know the logic of the prescribing doctor. Whenever you are in doubt, ask not only physicians, but pharmacists and non-physician professionals who have a history of treating your family member. Physicians and pharmacists use the Physicians Desk Reference. This guide is not available for free, but you can ask your doctor and pharmacist to let you see the appropriate sections. You must have confidence and comfort that a medication recommendation is right for your family member.
Clarke
Out of 1,393 parents, 30% stated that they would not want their children to become friends with a child with depression, and 25% stated that they would not want their children to become friends with a child with AD/HD. Only 10% expressed such views about children with asthma and 5% about children with “normal troubles.” The core message is that some parents do not want their children spending time with children who have these challenges. The researchers conclude that “a substantial minority of American adults are reluctant to interact with or to have their children interact with children described in ways consistent with ADHD or depression.”
My personal experiences with our now 16-year-old son, Andrew, are really not a problem with parental attitudes. Parents in our community seemed to have no problems with Andrew playing with their sons. Parents were generally open and receptive. The problem was that Andrew’s interests and abilities generally did not match those of the other boys, and thus Andrew became lonely. Scouts, community sports, and church were arenas where Andrew could participate with other children. He was still different and still not an equal peer, but with some exceptions, he was treated decently. There are always the boys who say harsh and unkind things. There are also enough boys with special needs in our community so that Andrew developed a handful of friends with whom he was comfortable. Parents of kids with special needs organized special outings and gatherings so their children could have regular and normal fun.
The Microsoft dictionary defines “stigma” as “shame and disgrace attached to something regarded as socially unacceptable.” Stigma leads to loss of self-esteem, internalization of negative self-images, anxiety, and social isolation. Andrew has experienced all of these growing up, but I don’t attribute them to parental attitudes in our community. I attribute them to his “differentness” and how regular boys think and act. Of course, when a kid told Andrew at soccer practice, “Andrew, you stink; why don’t you go home,” and his dad was standing there, I did wish his dad had said that was no way to act. But I also did not comment to the father about his son’s comment.
We each have to determine our own comfort level with attitudes about disabilities and how to deal with them. My wife and I have tried to be honest with everyone. Neither of us is assertive with other parents. Church, scouts, and community sports have presented positive opportunities for Andrew to be accepted and integrated into regular activities.
Social rejection is a highly painful life experience for the child and the family. Support groups, such as CHADD support groups, can be helpful coping mechanisms.
An Update About Baseball
Andrew and I just returned from our first baseball spring training experience in Florida – six games in six days. Andrew’s highlights were meeting with Cincinnati Reds player Jeff Conine and attending an autograph session with Boston Red Sox players. One of Jeff’s sons has AD/HD and the Conine family was featured as the cover story in the October 2006 issue of Attention!® magazine. Andrew has matured a lot since he entered his new school this year. He was a good traveling partner and we have grown much closer. Life, of course, always throws “curve balls.” I severely sprained my lower back and Andrew came down with shingles, thus delaying his return to school. But we have to be flexible and adaptable in life. The memory of six games in six days as father and son will be with us for a lifetime.
Blog Comments
Three comments were submitted in response to my last blog. One was the relationship of sleep disorders to AD/HD. Our National Resource Center on AD/HD “What We Know” papers discuss these issues in passing, but we do not yet have a dedicated paper on this topic. We know that sleep problems are a side effect of some AD/HD medications. We know that sleep disorders can sometimes cause symptoms of AD/HD. The CHADD professional advisory board will be developing a clearer and separate statement on this problem. We will also be consulting with the National Sleep Foundation.
Comments continue coming in about the role of faith communities and churches in dealing with folks with special needs. A parent wrote: “Make sure your child is getting all the interventions necessary” to help in these situations.
One commentator raised questions about a medical doctor’s prescribing recommendations. When you are in doubt about a recommendation, first ask the doctor questions. If you are still unsatisfied, second and third opinions must be sought. These are difficult and challenging decisions. You need to know what the Food and Drug Administration recommends. You need to know the logic of the prescribing doctor. Whenever you are in doubt, ask not only physicians, but pharmacists and non-physician professionals who have a history of treating your family member. Physicians and pharmacists use the Physicians Desk Reference. This guide is not available for free, but you can ask your doctor and pharmacist to let you see the appropriate sections. You must have confidence and comfort that a medication recommendation is right for your family member.
Clarke
Wednesday, March 7, 2007
Collaborations and Challenges
Collaborating To Improve Child Mental Health
Last Friday, CHADD national president Anne Teeter Ellison and I attended our third children's mental health family summit. Facilitated by the American Academy of Child and Adolescent Psychiatry (AACAP), the summit meets twice a year, and workgroups meet between meetings. Besides the AACAP and CHADD, associations collaborating through the summit include the Autism Society of America (ASA), Child and Adolescent Bipolar Foundation (CABF), Federation of Families for Children's Mental Health (FFCMH, Mental Health America (MHA), and National Alliance on Mental Illness (NAMI). Our objectives are to enhance access to and knowledge of science-based treatments and supports, and to counter anti-psychiatry attacks on the legitimacy of such treatments and supports. The summit is one of those opportunities that national association leadership offers. One of our priorities is to encourage and support such collaborations at the state and local level. Families and professionals need better understanding and more respectful dialogue. These meetings complement CHADD’s efforts to build a social movement to assist persons with AD/HD and related disorders.
AACAP has just produced materials, including a booklet, video, and practice parameter on AD/HD.
Challenges in the Faith Community
Part of my family’s success in dealing with AD/HD in our family has been due to our church. Four boys with special needs, including our pastor’s son—all within two years of age of each other—grew up and came through the church together. Our church community was an important natural support for our son and family.
Two events occurred last week that saddened me, as a Presbyterian, and reinforced how much more CHADD needs to do to more effectively educate the public about AD/HD and related disorders. The published science states that AD/HD is a neurobiological disorder, a biologically based disorder of the brain. Go to the National Resource Center on AD/HD Web site to see the CHADD professional advisory board consensus statements summarizing the published science on AD/HD.
Last week, the NAMI Multicultural Action Center shared a February 23 Chicago Tribune article reporting the following incident. A minister had been talking with God and he told a member of his church, who said that she had depression, that she was cursed due to her sin. The good reverend advised the woman to stop taking her medications and pray for forgiveness. She complied, and soon thereafter threw herself down a flight of stairs in an effort to commit suicide.
A day or two later, we received an e-mail from a distressed CHADD member. She and her husband had attended a Christian marriage enrichment weekend and reported that the one booklet resource available to all conference attendees described AD/HD as a "spiritual problem," meaning a sin. CHADD will write the conference organizers and attempt to begin a dialogue.
CHADD has developed and will be expanding our outreach efforts to better inform faith communities about the science of AD/HD. And we are attempting to better understand the importance of faith for some people in dealing with their AD/HD. Several CHADD community forums have included faith communities in the presentations. At last year's CHADD annual conference, we offered our first session on natural supports, including the potential role of faith for some families with AD/HD. Faith communities and CHADD have as our shared goal the promotion of healthy individuals and families. There is much we can do to enhance dialogue and overcome artificial barriers to accessing science-based assistance. A social movement supporting individuals with AD/HD not only advocates legal protections and government assistance when warranted, but also puts in place peer and community supports, including nonprofessional natural supports.
There are resources to assist persons with mental disorders in communities of faith. These include www.faithnetnami.org (a program of the National Alliance on Mental Illness); www.keyministry.org (a listing of churches with special programs for persons with mental disorders through the Key Ministry Foundation); www.mentalhealthministries.net (another program that lists churches with special programs through the Pathways to Promise program); and www.ncccusa.org (the National Council of Churches, which produced a video, “Shadow Voices: Funding Hope in Mental Illness”).
Challenge: Avoiding Conflict of Interest
CHADD board of directors' policy stresses that CHADD does not endorse services, publications, medications, treatments, or professionals. We clearly state this in ATTENTION!® magazine and on our Web site. To diversify our revenue and to allow access to community resources without endorsing, CHADD allows paid advertisements in our magazine and on our Web site. National volunteers sign conflict of interest avoidance statements.
Many of us are vulnerable to non-scientific claims as we search for assistance. During the past year, several situations have arisen with individual CHADD chapter leaders. CHADD chapter leaders are required to sign conflict of interest avoidance statements whereby they will not use CHADD chapter meetings or lists of CHADD members to advertise and promote their services or products. Almost all CHADD chapter leaders are volunteers whose motivation is to provide a community resource to persons with AD/HD and related disorders, without personal gain. Their motivation is what makes America great: uncompensated voluntary work to organize and run a community resource for persons in need. For those of us at the national level—both paid staff and uncompensated volunteers—this is an inspirational and motivating force in our daily lives, role-model volunteers helping others. We apologize when a few individuals misuse their position of assistance to sell products and services. CHADD members and CHADD leaders take possible conflicts of interest very seriously.
No CEO Blog Next Week
My son has a break from school and he and I are off to our very first spring baseball training games in Florida. Every parent and child needs some areas of common interest to better bond. Baseball is one of those areas for Andrew and me.
Clarke
Last Friday, CHADD national president Anne Teeter Ellison and I attended our third children's mental health family summit. Facilitated by the American Academy of Child and Adolescent Psychiatry (AACAP), the summit meets twice a year, and workgroups meet between meetings. Besides the AACAP and CHADD, associations collaborating through the summit include the Autism Society of America (ASA), Child and Adolescent Bipolar Foundation (CABF), Federation of Families for Children's Mental Health (FFCMH, Mental Health America (MHA), and National Alliance on Mental Illness (NAMI). Our objectives are to enhance access to and knowledge of science-based treatments and supports, and to counter anti-psychiatry attacks on the legitimacy of such treatments and supports. The summit is one of those opportunities that national association leadership offers. One of our priorities is to encourage and support such collaborations at the state and local level. Families and professionals need better understanding and more respectful dialogue. These meetings complement CHADD’s efforts to build a social movement to assist persons with AD/HD and related disorders.
AACAP has just produced materials, including a booklet, video, and practice parameter on AD/HD.
Challenges in the Faith Community
Part of my family’s success in dealing with AD/HD in our family has been due to our church. Four boys with special needs, including our pastor’s son—all within two years of age of each other—grew up and came through the church together. Our church community was an important natural support for our son and family.
Two events occurred last week that saddened me, as a Presbyterian, and reinforced how much more CHADD needs to do to more effectively educate the public about AD/HD and related disorders. The published science states that AD/HD is a neurobiological disorder, a biologically based disorder of the brain. Go to the National Resource Center on AD/HD Web site to see the CHADD professional advisory board consensus statements summarizing the published science on AD/HD.
Last week, the NAMI Multicultural Action Center shared a February 23 Chicago Tribune article reporting the following incident. A minister had been talking with God and he told a member of his church, who said that she had depression, that she was cursed due to her sin. The good reverend advised the woman to stop taking her medications and pray for forgiveness. She complied, and soon thereafter threw herself down a flight of stairs in an effort to commit suicide.
A day or two later, we received an e-mail from a distressed CHADD member. She and her husband had attended a Christian marriage enrichment weekend and reported that the one booklet resource available to all conference attendees described AD/HD as a "spiritual problem," meaning a sin. CHADD will write the conference organizers and attempt to begin a dialogue.
CHADD has developed and will be expanding our outreach efforts to better inform faith communities about the science of AD/HD. And we are attempting to better understand the importance of faith for some people in dealing with their AD/HD. Several CHADD community forums have included faith communities in the presentations. At last year's CHADD annual conference, we offered our first session on natural supports, including the potential role of faith for some families with AD/HD. Faith communities and CHADD have as our shared goal the promotion of healthy individuals and families. There is much we can do to enhance dialogue and overcome artificial barriers to accessing science-based assistance. A social movement supporting individuals with AD/HD not only advocates legal protections and government assistance when warranted, but also puts in place peer and community supports, including nonprofessional natural supports.
There are resources to assist persons with mental disorders in communities of faith. These include www.faithnetnami.org (a program of the National Alliance on Mental Illness); www.keyministry.org (a listing of churches with special programs for persons with mental disorders through the Key Ministry Foundation); www.mentalhealthministries.net (another program that lists churches with special programs through the Pathways to Promise program); and www.ncccusa.org (the National Council of Churches, which produced a video, “Shadow Voices: Funding Hope in Mental Illness”).
Challenge: Avoiding Conflict of Interest
CHADD board of directors' policy stresses that CHADD does not endorse services, publications, medications, treatments, or professionals. We clearly state this in ATTENTION!® magazine and on our Web site. To diversify our revenue and to allow access to community resources without endorsing, CHADD allows paid advertisements in our magazine and on our Web site. National volunteers sign conflict of interest avoidance statements.
Many of us are vulnerable to non-scientific claims as we search for assistance. During the past year, several situations have arisen with individual CHADD chapter leaders. CHADD chapter leaders are required to sign conflict of interest avoidance statements whereby they will not use CHADD chapter meetings or lists of CHADD members to advertise and promote their services or products. Almost all CHADD chapter leaders are volunteers whose motivation is to provide a community resource to persons with AD/HD and related disorders, without personal gain. Their motivation is what makes America great: uncompensated voluntary work to organize and run a community resource for persons in need. For those of us at the national level—both paid staff and uncompensated volunteers—this is an inspirational and motivating force in our daily lives, role-model volunteers helping others. We apologize when a few individuals misuse their position of assistance to sell products and services. CHADD members and CHADD leaders take possible conflicts of interest very seriously.
No CEO Blog Next Week
My son has a break from school and he and I are off to our very first spring baseball training games in Florida. Every parent and child needs some areas of common interest to better bond. Baseball is one of those areas for Andrew and me.
Clarke
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 www.chadd.org/summercamp. 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.
Clarke
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 www.chadd.org/summercamp. 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.
Clarke
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!
Clarke
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!
Clarke
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.
Clarke
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.
Clarke
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 www.faithnetnami.org and www.keyministry.org.
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.
Clarke
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 www.faithnetnami.org and www.keyministry.org.
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.
Clarke
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