Wednesday, December 30, 2009

Health Care Reform: Status of CHADD’s 13 Principles

The House and Senate have each passed health care reform legislation. What is the status of CHADD's 13 principles?

On August 13, CHADD issued 13 principles to consider in health care reform. On October 15, CHADD and five national sister organizations (AACAP, ASA, CABF, MHA, and NAMI) issued five principles to consider. The five are a merged and consistent statement with the previous thirteen.

CHADD's 13 principles and their legislative status:

1. Provide health care coverage for all Americans.

Health care coverage is greatly expanded in both bills. The Congressional Budget Office (CBO) anticipates 94% coverage in the Senate bill and 96% insurance coverage in the House bill once the bills are fully implemented.

The Senate bill expands Medicaid mandatory eligibility to 133% of the federal poverty level, while the House bill expands mandatory eligibility to 150%. Both bills create a "National High Risk Pool," the Senate bill for uninsured people denied coverage due to a pre-existing condition, the House bill for the insured and those denied coverage due to a pre-existing condition. These pools would terminate upon the enactment of "insurance exchanges."

The Senate bill would establish state-based health insurance exchanges for individuals and small businesses by 2014. The House bill would establish a National Health Insurance Exchange for those uninsured without Medicare and Medicaid coverage and for small employers. Data is inconsistent over the true extent of coverage.

Both bills require individual mandates to have insurance (2013 in the House, 2014 in the Senate) and non-small employer mandates to offer insurance. There is much debate on whether these coverage options are "affordable."

2. Require "parity" for mental health assessment and treatment, including prohibiting non-discrimination between health conditions.

The Senate non-discrimination requirement, including health status, medical condition, and disability, becomes effective 2014. The House bill includes mental health and substance abuse parity requirement and authorizes a Health Choice Commission to define the extent of the non-discrimination requirement. The Senate bill also requires mental health parity. It is covered as part of the essential health benefits package, but the language is not as clear as the House bill in terms of parity.

3. Prohibit discrimination on the basis of pre-existing conditions.

The Senate prohibition begins immediately for children and the prohibition becomes effective in 2014. The House bill reduces the "look back" period from 6 months to 30 days and the prohibition becomes effective in 2013.

4. Prohibit health plans terminating coverage when people become seriously ill or when they are treated for long-term chronic conditions and eliminate lifetime conditions.

"Rescissions," the practice of terminating health plan coverage, is prohibited, 2011 in the Senate bill and July 1, 2010 in the House bill. The House bill prohibits lifetime limits in 2010; the Senate bill contains a variety of approaches, 2011-2014.

5. Prohibit exorbitant out-of-pocket deductibles and co-pays.

This is a difficult to define goal and one subject to lots of debate.

6. Allow young adults to stay covered on their parents' plan until the age of 26.

The Senate bill allows coverage through the age of 25, effective 2011. The House bill allows coverage through the age of 26, effective 2010.

7. Target specific coverage of young adults, particularly those with special health care needs.

Not specifically addressed. A new long term care program, named CLASS, would be created by both bills.

8. Target specific coverage of children, particularly those with special health care needs.

Not specifically addressed. A new long term care, named CLASS, would be created by both bills.

9. Require continued affordable coverage when one loses or changes jobs.

The Senate bill requires guaranteed issue and renewal, effective 2014. The House bill requires guaranteed issue and renewal, effective 2010.

10. Include wellness and prevention services.

Both bills authorize the creation of a variety of wellness and prevention services. The Senate authorizes comprehensive workplace wellness programs with premium incentives and the House authorizes a grant program to small employers.

11. Promote integrated primary care with specialty services, including promotion of the "medical home" concept and including consumer-oriented and meaningful use of electronic medical records and personal health records.

Both bills would establish "accountable care organizations" and "medical homes," and expand the use of electronic medical records and personal health records.

12. Allow consumers a choice of health plans.

Both bills create government-sponsored health insurance exchanges. The Senate is state-based, while the House is national (with a state option to create their own exchange). The House bill has a public health insurance option, to be offered as one health insurance choice through the exchanges. This is an area of confusion and controversy. Regarding buying insurance across state lines, neither bill permits it as we know it today (e.g., a Massachusetts citizen won't now be permitted to buy Virginia Insurance Policy X). Under both bills, states may form regional compacts to offer insurance, but these can't be used to bypass state insurance regulations and consumer protections. Any citizen would still be buying insurance from within his or her own state's regulatory structure. Of course, once the new coverage/package requirements become effective (i.e., what qualifies as a qualified health plan), every plan must, at a minimum, satisfy these requirements.

13. Include culturally and linguistically appropriate programs that affirmatively address racial and ethnic disparities, including the recognition of disability-based health disparities.

Both bills promote work force diversity, require diversity data collection, and authorize grants to increase diversity services and expand services to the medically underserved. Disability is a recognized disparity.

I hope this summary is helpful as you sort through the issues of national health care reform. While many disagree about the role of the national government and the financial impact of taxes and fees, people with AD/HD and related and co-occurring disorders would greatly benefit from this legislation. People who have faced discrimination and lack of insurance coverage because of their disability would benefit from this legislation. Issues of affordability continue to be confusing and controversial. CHADD works with roughly 200 sister national voluntary health agencies, mental health, and disability organizations through a variety of coalitions to advocate a public policy agenda developed by our unpaid volunteer public policy committee and national board of directors. These coalitions have been identified in our previous public policy postings. We recognize that some of our members and constituents oppose these forms of national health care reform.


You can read this blog and others like it at the HealthCentral website.

Thursday, December 17, 2009

FDA to Promote Life Cycle Protections

On December 8, the new Food and Drug Administration Commissioner, Margaret Hamburg, MD, told the National Health Council, which includes CHADD, that the FDA will be tracking and responding to a "life cycle" approach to medication treatment. Rather than approve medications for sale on the market after approved clinical trials and waiting for adverse reactions to be reported, the FDA (pending additional resources by Congress) plans to track medications over the course of a lifetime (termed "life cycle" tracking).

CHADD and roughly 50 other voluntary health agencies (VHAs) are members of the National Health Council. VHAs are organizations governed by unpaid volunteers, who raise memberships and donations from the public, and are focused on diseases, disabilities, and disorders. Dr. Hamburg was the featured speaker at the NHC December 8 annual meeting.

Dr. Hamburg emphasized the public health protection role of the FDA—anticipating public health change and modifying the FDA regulatory approach. She stressed the need for "personalized medicine," recognizing that while the great mass of the population will do well with a medication, the FDA must do a more effective job of identifying and then regulating adverse medication reactions by small subsets of the population. Part of this approach is to better identify at-risk populations.

The commissioner emphasized protection of food and nutrition and a more aggressive approach to regulating tobacco. She did not mention dietary supplements, other than eliminating hazardous supplements. I still hope that Congress one day will give the FDA the legal authority to regulate the quality and integrity of diet supplement ingredients and the legal authority to substantiate diet supplement claims. Many diet supplement manufacturers and distributors make unsubstantiated claims regarding the healing nature of such products for a variety of learning, developmental, and mental disorders. My family uses dietary supplements and we think they are helpful, but desire an objective third party to substantiate claims and integrity.

It is nice and reassuring to hear the new FDA commissioner thinking about a more proactive consumer and family protection focus. It was nice to see the FDA commissioner interested in communicating with roughly 50 national VHAs.


You can read this blog and others like it at the HealthCentral website.

Tuesday, November 10, 2009

Neurofeedback: Seeking the Evidence

Thousands of American families, including my own, have invested thousands of dollars in a promising intervention for AD/HD—neurofeedback. No health insurance plan in America pays for neurofeedback for the treatment of AD/HD as the evidence-based science is not yet there. CHADD’s Professional Advisory Board has published What We Know statements on the evidence-based science on complementary and alternative interventions, including neurofeedback, available on the website of CHADD’s National Resource Center on AD/HD.

CHADD advocates a significant additional financial investment by the National Institute of Mental Health in neurofeedback for AD/HD. During the past year, the CHADD Professional Advisory Board (PAB) has discussed with the International Society for Neurofeedback and Research (ISNR) the published science behind this intervention for AD/HD. At this point in time, we have asked ISNR eight key questions about the research. They are:

1. CHADD has stated that for a neurofeedback intervention to be described as "evidence-based,” we would expect to see randomized studies involving double-blind, sham control of equal intensity and duration. Does ISNR agree with this standard for evaluating the published science? If not, what are ISNR's standards for evaluating the published science?

2. Brainwave patterns profiles: There is ambiguity in the literature about: (a) whether or not there are different “profiles” for brainwave patterns; (b) whether or not these profiles can be categorized; and (c) whether or not these profiles can be reliably identified prior to intervention. What is ISNR’s position on the overall issue of profiles and their standardization?

3. Profile-based intervention: Are there standardized practice guidelines for neurofeedback clinicians to use in order to match profile with intervention? If so, is this done uniformly within the profession? Is there a manual that clinicians use for this purpose? Given that the need to match profile with intervention was emphasized in the letter from ISNR, why is this not made clear in the literature?

4. Generalization: Given that discussion of this is largely absent from the literature, to what extent do members of the organization feel that the effects that are seen generalize to other behaviors and real-life settings? What do clinicians say to patients in this regard?

5. Given the comorbidities present in most research samples of individuals with AD/HD, (a) what is the strength of the evidence that the intervention is specifically addressing AD/HD, and (b) to what extent are the dependent measures AD/HD-specific?

6. Persistence: What evidence is there that any effect seen persists, and does this vary by subtype of brain wave pattern? Should neurofeedback studies routinely include a 12-month follow-up assessment of outcomes? If so, should the dependent variables include real-life measures?

7. To what extent may the experience/expectation of the clinician/coach/trainer affect the outcome (i.e., is there a degree of “facilitation” in this type of intervention)? Given that you emphasize the importance of the trainer having clinical background and tailoring the training to the patient, how can it be clarified which factor—the neurofeedback itself or the intense repeated therapeutic interaction with the clinically trained trainer—is having the effect?

8. Who has access to purchase neurofeedback equipment? For clinicians using this equipment, does ISNR have any published or readily available guidelines concerning the qualifications a clinician must have or the minimal standards a clinician must meet?

As this CHADD PAB-ISNR dialogue continues, CHADD will keep the public informed, when there are advances in the evidence-based science.


Friday, October 30, 2009

Work and Social Security Programs—Impact on AD/HD

My 19-year-old son is in a post-high school program that offers trial work assignments, independent living skills, and social skills, combined with some community college. We are hopeful that he will develop work skills. Social challenges are his most immediate challenge. The prospect of no health insurance because of a lack of full-time employment with a large employer is a longer-term concern (and thus our support for national health care reform). With time and support, work should be a realistic goal.

At CHADD’s 21st annual international conference two weeks ago in Cleveland, we had two sessions on work, economic crisis, and Social Security programs. Rick Tully with the Ohio Department of Mental Health presented an overview of government programs to assist in times of economic hardship. These included the Social Security Administration (SSA) income assistance programs—Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). To qualify for SSI and SSDI, one must not be able to “engage” in “substantial gainful activity” and one must have a documentable medically determinable disability.

Tom Gloss of the Social Security Administration conducted a session on the Ticket-to-Work—Work Incentives Program. Ticket to Work is a program for persons already on SSI or SSDI who want to work.

AD/HD is a qualifying medical disability for SSI for children. One has to have substantial limitations, but it is a qualifying disability. There are 194,026 children (under age 18) on SSI with a primary or secondary diagnosis of AD/HD.

Currently, there are no SSA medical disability criteria for AD/HD in adults. The law requires that there be a medically determinable impairment and that there be substantial functional limitations. Adults who meet the Diagnostic and Statistical Manual (DSM) criteria for AD/HD would meet the medically determinable impairment criteria. Then, SSA would determine the severity of disability and its relation to work. Failure to precisely list AD/HD in adults will be a major roadblock to some individuals becoming eligible for SSDI or SSI. There are no SSA regulations preventing an adult with AD/HD from becoming eligible.

For any of the mental disorders, one must have substantial limitations in specific areas such as activities of daily living, concentration, social interaction, and ability to adapt to changes in the environment.

The challenge: Many people with AD/HD and related disorders don’t have the severity of limitations to meet the SSI and SSDI test. But they also may not have the ability to sustain permanent and consistent full-time work. Finding a social policy that encourages work, reduces disability, and provides health insurance—while keeping the social safety net of SSI and SSDI—is a very difficult challenge. CHADD continues to work with national public policy makers to address these difficult issues.


You can read this blog and others like it at the HealthCentral website.

Wednesday, September 23, 2009

"Medical Homes" Included in Healthcare Reform Proposals

This morning I attended a Campaign for Mental Health Reform congressional briefing, “The Integration of Mental Health and Health: Evidence from the Medical Home.” CHADD is a Campaign member. All five congressional committee draft healthcare reform legislative proposals contain financial incentives for creating and expanding “medical” or “healthcare” homes.

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. Medical homes as defined by AAP 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.

One of the briefing speakers was Ted Epperly, MD, the president of the American Academy of Family Physicians. I asked the other speakers (a psychiatrist with the Carter Center Mental Health Program, a psychiatrist with the Missouri Department of Mental Health, and a PhD health and disease management director of prevention programs) if they agreed with Dr. Epperly’s policy and practice objective that every American have a “trusted relationship with a personal physician”? They did. All emphasized the need for a full interdisciplinary team. All agreed that the practice should be fully integrated and “patient-centered.” All agreed that the physician should be the “quarterback” of the team and have the ultimate accountability. All agreed that physician assistants, nurse practitioners, and various mental health professionals were essential to the team. All agreed that this was the goal. All agreed that this is not practice today, but we are moving toward it. All agreed that the electronic medical record was a methodology to help achieve this objective.

There are many different models of “medical homes,” involving different types of professionals based on the age and health situation of the consumer. CHADD supports adapting the AAP model for children with special needs to other populations, including adults.


You can read this blog and others like it at the HealthCentral website.

Wednesday, September 2, 2009

AD/HD and the Role of Government

Following receipt of our August 13, 2009 e-mail blast to our 68,000 constituents titled Get Involved—Health Care Reform and Congress—13 Principles to Consider, a gentleman asked to be removed from our mailing list. He was in his fifties and has lived with AD/HD his entire adult life. He commented that to deal with AD/HD, CHADD did not need to promote “government dependence.” So, I wanted to share with you some CHADD philosophy, as articulated through our public policy platform on adults with AD/HD and children with AD/HD, as developed and approved by our volunteer leadership.

Many people with AD/HD face policy obstacles to fulfilling their life expectations. These can be government policies and these can be business policies. For example, health insurance is regulated by government but mostly implemented by insurance businesses. In health care reform, we are just trying to eliminate discrimination and policy obstacles.

For example, CHADD’s 13 principles include the following three:

1) Health care plans should require “parity” for mental health assessment and treatment. This includes non-discrimination between health conditions.
2) Health care plans must not discriminate on the basis of pre-existing conditions or health status.
3) Health care plans must not terminate coverage when people become seriously ill or are being treated for long-term chronic conditions and must not have lifetime caps.

People with AD/HD frequently have less generous coverage and pay more out-of-pocket costs because of discrimination. People with “pre-existing” AD/HD are frequently denied health insurance. And people with AD/HD frequently face limits on the treatment of AD/HD over time. CHADD’s objective is not to make people with AD/HD become “dependent” on the government. Our objective is to eliminate discriminatory coverage policies so citizens with AD/HD can receive the same health benefits as other citizens.

Likewise, our objective that a health care initiative must provide health care coverage for all Americans is not intended to make Americans “dependent” on government, but to ensure that all Americans have the health insurance coverage that they need.

The last two principles I will address here are: a health care initiative that allows young adults to stay covered on their parents’ plan until the age of 26, and a health care initiative that specifically covers young adults, with a particular focus on young adults with special health care needs. As the father of a soon-to-be 19-year-old son with substantial co-occurring disorders, I am supportive of CHADD’s advocacy of these principles in order to avoid “government dependence.” The education system and the vocational rehabilitation system have encouraged our son to apply for Supplemental Security Income (SSI), as his vocational future is uncertain. The major reason for this encouragement is lack of health insurance—depending on student status, at ages 18 and 22 he is on his own to locate his own health insurance. Our son and his parents reject the notion of needing SSI at age 18. He has lots of years left to develop his vocational skills and enhance his education. But we are worried about health insurance. The Ross family opposes the economic incentive to apply for government financial assistance because of the fear and possibility of no health insurance. Parents throughout the nation and in our family and social circles have this same philosophy.

So, asking the government to provide adequate non-discriminatory health insurance for all citizens, particularly those with a history of special needs is not promoting “government dependence,” but encouraging independence to pursue life choices. As CHADD CEO, I regret that we lost a constituent. But as the father of a young adult with special needs, I am glad that I work for an organization whose volunteer leadership sees the validity of these objectives.


You can read this blog and others like it at the HealthCentral website.

Wednesday, August 12, 2009

Research Interests and Priorities

In the past two weeks, a federal government agency and a sister medical association have asked CHADD about our research interests and priorities related to AD/HD. Below is the list of 20 AD/HD research interests that we have tentatively identified.

1. Gene-Environment Interaction
2. Gene Risk Factors
3. Biogenetic Markers
4. Executive Functioning
5. Neurocognitive Deficits Associated with AD/HD
6. Brain Research Integrating Neurology and Psychiatry
7. Longitudinal Neuroimaging Research
8. Chart Trajectories to Determine Interventions
9. Lifespan Dynamics and Characteristics
10. Impairment Index
11. Mental Disorders as Developmental Disorders
12. Personalizing Interventions
13. Impact of Culture, Race, Etc. (including disparities and possible differential medication impact)
14. Translate Research to Practice (and Public Health)
15. Core Features of AD/HD versus Comorbidity Features
16. Autism-AD/HD Interface
17. Efficacy of Neurofeedback
18. Outreach to National Center on Complementary and Alternative Medicine
19. Patient Perspective into Evidence-Based Practice (including the lived experience)
20. Evidence Base of CHADD's Parent to Parent Program

Many of these topics are discussed in some depth in our National Resource Center on AD/HD (NRC) website and in the public policy section of CHADD's website.

Your questions, observations, and commentary will be very helpful as we refine the list.


You can read this blog and others like it at the HealthCentral website.

Tuesday, July 7, 2009

Health and Wellness in Health Care Reform

CHADD is pursuing the promotion of health and wellness as part of our health care reform agenda.

A blogger and former CHADD chapter coordinator reacted to my June 25 blog on health care reform messages noting: “Totally left out of the debate are such factors as encouraging health and wellness. A huge chunk of our health care costs arise from avoidable conditions—obesity, lifestyle choices (smoking, for instance), inactivity, and so on.” I did leave this out of my blog entry that week; however, CHADD is actively involved with this objective. Blog comments are supposed to be very brief; thus, I limited my message and links to two coalitions.

Encouraging health and wellness is an important component of health care reform and part of both the National Health Council (NHC) and Campaign for Mental Health Reform (CMHR) advocacy. CHADD works through these coalitions. The NHC comprises roughly 44 voluntary health agencies (VHAs), including those addressing heart, cancer, diabetes, epilepsy, arthritis, asthma, and autism, as well as CHADD. We reach consensus and publicize the consensus.

Likewise, the CMHR is a coalition of 17 national mental health associations, including National Alliance on Mental Illness (NAMI) and Mental Health America (MHA). We reach consensus and publicize the consensus. My June 25 blog merely highlighted the priorities of these two important coalitions. These 61 national health organizations are serious about the principles I discussed in last week’s blog.

CHADD participates in three organizations where promoting health and wellness are important advocacy elements:

1. The Whole Health Campaign is a newer coalition that advocates integration of mental health and substance abuse into public health systems promoting healthy lifestyles, preventing disability and disease, encouraging lifelong management of chronic disease, monitoring health trends, and linking people to needed health services. The Whole Health Campaign advocates five actions to promote health and wellness that includes mental health and substance abuse. Link here for their five actions and paper on health and wellness.

2. Between January and May, the federal agency Substance Abuse and Mental Health Services Administration (SAMHSA) has convened “listening” sessions with mental health and substance abuse organizations, including CHADD. The result of these sessions was the SAMHSA publication of nine principles. The first principle is: “Articulate a national health and wellness plan for all Americans, with a focus on prevention and early intervention.” Link here for a copy of the SAMHSA principles.

3. CHADD co-chairs, with the March of Dimes, the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) External Partners Group (EPG) advocacy effort. The U.S. Congress, through the Economic Stimulus Act, established a new $600 million Prevention and Wellness Fund. The EPG was instrumental in convincing the Congress to insert “disabilities” in the initial legislation. At the last moment, in back-door tradeoffs, “disability” was deleted and the Fund focuses on chronic and infectious diseases. We continue to advocate that disability be included in prevention and wellness programs. Learn more about these efforts on the CDC-NCBDD website (click on “partners”) or visit the EPG website.

Several blogs ago I summarized the National Academy of Sciences’ Institute of Medicine report on prevention of mental health challenges in teens and young adults. This is a component of health and wellness.

Visit the public policy section of the CHADD website to see the comprehensive agenda we are pursuing. You can also read the health care reform objectives CHADD submitted to President Obama’s transition team. A single blog, briefly reviewing a few of the coalition efforts we advocate, is no substitute for the comprehensive agenda we work on.

There are many other aspects to health care reform, many of which CHADD is involved with. Visit our public policy website and keep the comments coming—particularly directly to your elected members of the U.S. Congress.


You can read this blog and others like it at the HealthCentral website.

Thursday, June 25, 2009

Health Care Reform Messages

Every day in the national media there are reports of the debates, discussions, proposals, and controversies about national health care reform. This is a very complicated arena.

Here are the highlights of CHADD’s priorities for health care reform (as of today).

CHADD, as a member of the National Health Council Voluntary Health Agencies, advocates five principles in addressing health care reform, as part of the Council’s “Campaign to Put Patients First” initiative:

1. Cover everyone.
2. Curb costs responsibly.
3. Abolish exclusions for pre-existing conditions.
4. Eliminate lifetime caps.
5. Ensure long term and end-of-life care.

At CHADD’s encouragement, each NHC principle includes an emphasis on “non-discrimination between health conditions.”

CHADD, as a member of the Campaign for Mental Health Reform, advocates the following priorities for mental health in health care reform:

6. Parity for mental health conditions in health benefit design; something stronger than “nothing in this legislation shall prevent implementation of mental health parity” and adequacy of the mental health benefit for subpopulations, such as children.
7. Chronic Care-Chronic Condition Management must include mental illness and mental disorders, such as serious and persistent mental illnesses such as schizophrenia, co-occurring physical illness and mental illness such as health attack/stroke and depression, and co-occurring mental disorders such as the AD/HD child mental disorder co-occurring prevalence data. Focus on lifelong disorders.
8. Encouragement of the “medical home” concept whereby professionals take responsibility for coordinating, integrating, and communicating services and supports. Included in this are consumer-family access to electronic medical records and implementation of personal health records.
9. Affirmative provisions dealing with racial and ethnic disparities, and affirmative provisions recognizing “disability based health disparities.”

There are many other important priorities. These are CHADD’s current priorities, through our membership in these two coalitions. CHADD belongs to many other Washington, DC-based coalitions.

Let us know if there are any very important principles missing from our current priorities. Get involved with your senators and representatives in the U.S. Congress to ensure that these priorities are included.


You can read this blog and others like it at the HealthCentral website.

Wednesday, May 20, 2009

Faces of AD/HD

Ask five people with AD/HD to describe their AD/HD, and one is likely to hear five different stories. Each will describe how inattention, hyperactivity, and/or impulsive actions created challenges. Each person’s intelligence, creativity, personality, natural supports (family, faith, neighborhood, community), school supports and accommodations, and access to professional and peer interventions will impact the degree of their challenges. Add co-occurring disorders and another mix of experiences occurs.

Two weeks ago, during National Children’s Mental Health Awareness Day, CHADD witnessed three different faces of AD/HD.

CHADD participated in the American Academy of Child and Adolescent Psychiatry (AACAP) Congressional visit day. CHADD organized appointments with members of Congress and media interviews with two young college students with AD/HD—Blake Taylor, author of AD/HD and Me, and Courtney Gifford, the reigning Miss Wyoming. Both Blake and Courtney have benefited from access to professional and school supports. Both have strong natural supports. Both are gifted individuals. Both articulated what living with AD/HD was like and how they have benefited from a variety of supports. Blake and Courtney will be featured in CHADD’s member benefit, the June issue of Attention magazine. CHADD members can read this article as soon as it’s posted on the Attention section of the website at the beginning of June.

That same week, CHADD’s president, Marie Paxson, was recognized for her effective family advocacy work by the Commonwealth Academy, a private school in the greater Washington, DC area. Presenting the award were James Carville and Mary Matalin, whose daughters successfully overcame AD/HD and learning challenges in school. James discussed his challenges with AD/HD, describing how an extremely talented and bright guy with high energy deals with his challenges to this day, including the night of the award presentation. CHADD’s June Attention magazine will feature an interview with James Carville, and Mary Matalin will be interviewed in the August issue. CHADD members can read these interviews as soon as they’re posted on the website—part one at the beginning of June, and part two in August!

We each have our stories of dealing with AD/HD. Some have highly successful outcomes. Some are funny. Some are painful and depressing. With some, measuring success is more difficult. Attempting to accurately portray the face of AD/HD to the public will remain a challenge. It takes many forms and we have many different experiences. We should appreciate and learn from the variety of experiences.


You can read this blog and others like it at the HealthCentral website.

Thursday, April 23, 2009

Media's Rush to Publish Can Mislead Parents

On Monday, April 13, USA Today published a commentary titled “New Findings Raise Questions about Use of ADHD Drugs.” CHADD was asked to prepare a counterpoint; however, USA Today editors would not share their commentary with us before publication. They verbally informed us that they would significantly caution against the use of medications and they would criticize CHADD for receiving funding from pharmaceutical companies. We proceeded to prepare a statement.

You can read the commentaries here or go to the homepage of our website and click on Media coverage on effective treatment under the “In the News” section.

As the father of a son with AD/HD and co-occurring challenges, I found the limitations and conditions imposed by USA Today confining. I previously shared some of my personal understandings of the NIMH-funded Multimodal Treatment Study in the context of other published research with CHADD’s Professional Advisory Board. I share here my understandings as a Dad.

1. At six to eight years, participants’ functioning remained improved compared with their functioning at the beginning, but the research does not “prove” this is related to specific treatments.

2. First year of treatment does not predict functioning after three years.

3. Six to eight years after initial treatment, children and adolescents with AD/HD still had significant academic and social problems but not as bad as at the baseline.

4. Thousands of personal stories from across the nation received through CHADD, including my own, report that proven treatments, including medication and structured behavioral interventions, are helpful. The MTA study did not conclude that treatments were ineffective; merely that over time, when they no longer receive systematic research-based intervention, participating children continued to have significant problems.

5. We have known for several years that, on average, there is height suppression early on with the medication. Parents have to balance this “on average” finding with the consequences of not treating AD/HD and their degree of access to high-quality structured behavioral interventions, special education services, parent training, and other helpful supports.

6. We have clearly known since the 1999 Surgeon General’s Report on Mental Health that for a subset of the population, medications either don’t work or have severe side effects. This issue was not addressed in the six-to-eight-year MTA Study follow-up.

7. As with many medications to treat a variety of illnesses and disorders, over time people with AD/HD stop taking medication.

8. People who remain CHADD members over a multi-year period of time, such as my family, generally seem to have family members with more severe forms of AD/HD and/or co-occurring mental and learning disorders. Researchers need to increase their attention to the more severe forms of AD/HD and those with co-occurring disorders. This is not an MTA Study finding, just common knowledge.

9. We know that good treatment must be sustained over time.

10. We know that optimal treatment combines a variety of coordinated approaches. For years, CHADD has referred to these combinations of treatments using the NIMH phrase “multimodal.” Maybe we need a new phrase, since many people focus just on the NIMH-funded MTA study when this phrase is used.

11. Scientists don’t know all the answers. Scientists should think carefully about the message they send to parents, families, consumers, and the public when they get too involved in the complexities of a particular research methodology or when they advocate one intervention to the detriment of other helpful interventions. Scientists should not initiate therapeutic squabbles about therapies. We parents are just looking for the best combination of what works.

12. The media seems obsessed with focusing on controversy, disagreements between scientists, and negative stories. CHADD attempts to deliver a message to the public that is science-based, balanced with the lived experience of thousands of families across the nation. When the science is unclear, we are uncertain. USA Today attempted to make the issue black-and-white—medications are either good or bad—in its point/counterpoint. In reality, there is a broader toolkit of interventions. We parents, if we have access to these various interventions, choose what we think are effective combinations. Severity of the disorder influences these selections.

13. Access to professional services and natural supports plays an important role in an individual’s success in dealing with life and with the symptoms of AD/HD. This is not an MTA Study finding—it is common sense, based on what we know about a family’s lived experience.

USA Today criticizes the CHADD website for not having detailed warnings about medications and the MTA Study—before the study follow-up was actually published. But rather than rush with a headline, CHADD wants its professional advisory board to reach a consensus on what published studies actually say before we disseminate the information.

USA Today criticizes CHADD for accepting funding from pharmaceutical companies. Since 2001, we have published on our website the amount, percent, and company donating. We have published on our website our policies and philosophies, including avoidance of conflicts of interest, and we limit such funding to no more than thirty percent of our revenue. CHADD’s practices are consistent with those of the leading voluntary health agencies in America. We are a national network of 12,000 members and 70,000 involved constituents, with hundreds providing volunteer support for others. We happen to accept some funds from industry, which allows us to broaden our services and support.

These are my thoughts as a Dad dealing every day with the consequences of AD/HD in the family. The media and all of us should strive to not lump under a single label the variety, complexity, and severity that constitutes what we call today AD/HD.


Wednesday, April 8, 2009

Preventing Disorders Among Young People

We know that AD/HD is an abnormality of how the brain functions, and we know that there is frequently a genetic element. We also know that environmental elements can influence brain development. We know that natural supports, such as home and community, can influence the symptoms of AD/HD. Now, the Institute of Medicine (IOM), National Academy of Sciences (NAS) has issued a new report, Preventing Mental, Emotional, and Behavioral Disorders Among Young People. This 400-page report, by the most prestigious body of medical science in the United States, is expensive and can be ordered here through the IOM. The IOM recommends that the national government make healthy mental, emotional, and behavioral development of young people a national priority, establish goals, and provide needed research and service resources to address the goals.

The report concludes that early interventions can be effective in delaying or preventing the onset of mental disorders among young people. CHADD's sister organization, Mental Health America "concurs" with the IOM, "supports the faithful implementation of a strong science base," and observes that "unfortunately, we lack a national initiative to advance the use of prevention and promotion approaches to benefit the mental health of the nation's young people."

The IOM recommends that national priorities should include:

1. Individuals who are at risk receive the best available evidence-based interventions prior to the onset of the disorder.
2. Promotion of positive mental, emotional, and behavioral development for all children and youth.
3. Poverty is a serious adversity that must be addressed.
4. Neighborhood violence is another serious adversity that must be addressed.

The IOM recommends federal agency research coordinated with practice. The government should identify communities with significant community-level risk factors and target resources to these communities. Researchers and community organizations should form partnerships to develop evaluations. Screening programs should be linked to interventions and evaluations. Risk and protective factors for specific disorders should be researched, and a focus should be on strengthening accomplishment of age-appropriate developmental tasks.

CHADD will be asking members of our professional advisory board to summarize programs cited by the IOM "as worth duplicating across the country," including:

1. Clarke Cognitive-Behavioral Prevention Intervention
2. Good Behavioral Game
3. Positive Parenting Program
4. Promoting Alternative Thinking Strategies (PATHS)

Prevention requires an investment of commitment and resources. The nation's school districts should be more responsible and involved with such prevention programs.


You can read this blog and others like it at the HealthCentral website.

Friday, March 27, 2009

Medication Treatment for AD/HD

An article about medication effectiveness and side effects is circulating in the media. A piece by Shankar Vedantam appeared on the front page above the fold of today’s Washington Post. The article highlights some of the disagreements that have arisen between leading scientists over a follow-up to the landmark Multimodal Treatment Study on AD/HD. We encourage concerned parents to learn more by perusing the CHADD website and the website of CHADD’s National Resource Center on AD/HD. As always, parents should consult with their treatment and prescribing professionals before making any decisions about the treatment of AD/HD. Any treatment, including treatment of AD/HD, must be individualized to meet the unique circumstances of the person and his or her family.


You can read this blog and others like it at the HealthCentral website.

Wednesday, March 18, 2009

Take and Make Time

My son Andrew, now age 18, and I just returned from our third consecutive baseball spring training trip to Florida. Our annual journey together has been a wonderful opportunity to bond.

This may be our last trip for some time. Next year Andrew will be out of high school and we are working on developing a post-high school experience. He may not be available. If the economy does not substantially improve, there will be no more vacations in the Ross family, after one we are planning in June in celebration of Andrew’s completion of high school. One never knows if a next opportunity will be there, but we will remember the last one.

It has been fascinating and wonderful to observe Andrew’s growing maturity and independence over these last three years of trips. He is a guy with a variety of special needs, significant inattention and anxiety among them.

Three years ago, Andrew had difficulty navigating a stadium without my prompts and supports. Now, he navigates any baseball stadium by himself, whether to get a hot dog, ice cream, score card, or memorabilia. He is comfortable at the ballpark.

Three years ago, Andrew needed me with him when he sought autographs. Now he is comfortable dealing with the crowds swarming for autographs and obtaining them himself.

Three years ago, personal hygiene was a challenge. He didn’t recognize its importance. Starting on our first trip three years ago, I insisted that he adhere to a personal hygiene schedule. Shaving, showering, putting on clean clothes, and other self-care tasks had to be completed before we went to the ballpark. Now he sees personal hygiene as part of his preparation for the day. (We still have major organization and neatness issues, however.)

Three years ago, Andrew never initiated discussions about his life situation and resisted answering my questions about the subject. While this remains a challenge today, during this year’s trip Andrew offered a few insights and questions about life—and his own life.

People grow, develop, and mature at very different rates. We need to provide patience, structure, and role modeling. Patience, structure, and role modeling pay off. It just takes some people a little longer.

If at all possible, take the time—make the time—to spend special time with your children. Andrew and I will remember these trips to Florida for the rest of our lives. They are special. Enjoy them as you are able.

I hope this isn’t too simplistic or self-evident. I hope it reinforces your thoughts and instincts. We had a great baseball trip—and as a Dad, I feel more hopeful than ever.


You can read this blog and others like it at the HealthCentral website.

Friday, February 13, 2009

Economic Stimulus and People with Special Needs

Many Americans have been following action in Congress on legislation designed to stimulate the economy. CHADD members, donors, and supporters have a variety of views on this legislation, reflecting viewpoints across the nation. CHADD has been actively engaged in this effort. Given the variety of opinions, I wanted to share our thinking and approach.

For over 21 years, CHADD’s volunteer citizen board of directors and volunteer citizen public policy committee have developed the organization’s public policy platform. The platform advocates proactive federal support of the health, education, employment, and related supports for those individuals affected by AD/HD who require such supports. Not every person with a diagnosis of AD/HD requires this level of support. CHADD also advocates for research on the causes and treatments of AD/HD as well as efforts to promote prevention and wellness.

CHADD did not initiate a national government economic stimulus program; the leadership of the United States did. Once Congressional leaders launched such an effort, CHADD joined our sister national associations to advocate for enhanced funding for

• special education services under the Individuals with Disabilities Education Act (IDEA);
• disability in the Centers for Disease Control and Prevention (CDC) Prevention and Wellness Fund;
• electronic medical records promotion to increase the likelihood of coordinated and integrated medical services; and
• increased Medicaid services at a time of significant job loss.

There are many other support and research programs important to people with AD/HD and related disorders contained in the legislation. Coalitions to which CHADD belongs have supported some of these other programs. The four above have been CHADD’s priorities for work.

Promoting jobs, preventing job loss, mechanisms to promote economic recovery and protection—these are big-picture legislative goals. If legislators act, our role is to advocate for supports helpful to those people with AD/HD and related disorders who need such supports.

Click here for details on the legislation.

Let us pray that the efforts undertaken by our leaders work for America.


You can read this blog and others like it at the HealthCentral website.

Wednesday, January 21, 2009

Disability: Pride, Acceptance, Power

On Sunday night, my wife and I attended the first ever Disability Power and Pride Inaugural Ball. The organizers stated that about 1,000 people attended. Former U.S. Representative Tony Coelho, who lives with epilepsy and serves on the national board of directors of the Epilepsy Foundation of America, served as master of ceremonies. Leading members of the U.S. Congress came by and spoke. President-elect Obama sent a written letter of gratitude and greeting.

I went to celebrate the progress of the movement I started working with in 1971, and to chat with fellow “gray hairs” about our progress. But what was evident, as soon as we walked in the door, was that this is a youth movement. Walking the streets of DC to get to the ball, we saw that young people were everywhere—excited and full of enthusiasm. Folks at the ball, while excited, hopeful, and full of dignity and pride, were concerned with their underemployment or nonemployment.

As President-elect, Barack Obama typically included messages about inclusion of people with disabilities. His written message emphasized, "In my administration, we will address the shameful employment situation for persons with disabilities." My son, aged 18, will graduate high school this coming summer. We have great anxieties about his next steps, about the many obstacles in the transition, and ultimately about gainful employment down the road. In recent years, CHADD has made applications to agencies of the federal government and private foundations to constructively and directly assist families dealing with the transition from school to work. We have not been successful.

Finding the balance is a key. We know that highly intelligent and creative folks with AD/HD do well in life and employment, despite their challenges (the Ned Hallowell school of thought). We know the result of failure to provide structured support and accommodation (the data documentation of Russell Barkley). CHADD has featured both experts at our annual conferences. Our challenge—and the challenge facing federal public policymakers—is how to recognize and build on the strengths and capabilities of individuals with disabilities, while acknowledging and modifying policies that provide the supports and accommodations to promote independence, happiness, and success. We really need an "individualized" response, which does not exist.

As an example, the U.S. Congress is working on an economic stimulus initiative. The House legislation includes a Centers for Disease Control and Prevention (CDC) initiative to lay the foundation for job growth by dealing with chronic illness. CHADD and sister national organizations working with the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) are trying to convince Congressional leaders to insert "disability and health" into these initiatives.

These are very challenging times. These are times of hope and opportunity. CHADD hopes we can continue to find the right balance between recognizing and building on capabilities while building the supports and accommodations people with disabilities need to be successful.

We will keep you informed.


You can read this blog and others like it at the HealthCentral Web site.

Wednesday, January 7, 2009

Living with a Child with a Disability

by Cynthia A. Smith, MS, CAS, JD

On December 16, 2008, I attended a press conference announcing the release of the findings from a research project titled Living with Autism. Although the study focused on children with autism spectrum disorders, I could not help but think a study on families of children with AD/HD or any disability that significantly impacts daily living activities might share some of the same findings.

I thought back to all the children with disabilities I worked with in high school and college, and to my own family experiences. As I listened to the results, I mentally checked off items of concern that I had heard from parents of children with disabilities over the years. The study confirmed for me what many family members and care providers have known for years: A child’s disability does not just change how we care for a particular child, it also affects the entire family because of physical and attitudinal barriers in society.

Harris Interactive surveyed 1,652 parents of children who have an autism spectrum disorder and 917 parents of children without disabilities. Parents were questioned regarding the ongoing challenges their families face in the areas of daily life, relationships, independence, education, housing, finances, employment, and healthcare, as well as how they view their child’s future. Some of the findings include:
- 14 percent of parents of children without disabilities think their child will be able to make their own life decisions, compared to 65 percent of parents of children with autism.

- 51 percent of parents of children without disabilities think their child will be able to have a spouse or life partner, compared to 9 percent of parents of children with autism.

- 60 percent of parents of children without disabilities are concerned about their child’s future employment, compared to 76 percent of parents of children with autism.

- 32 percent of parents of children without disabilities believe their child will be living at home beyond age 18, compared to 79 percent of parents of children with autism.

- 42 percent of parents of children without disabilities believe their child will have healthcare that adequately covers their needs, compared to 18 percent of parents of children with autism.

More information about the study is available 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.