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.
Clarke
Showing posts with label AD/HD. Show all posts
Showing posts with label AD/HD. Show all posts
Tuesday, November 10, 2009
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.
Clarke
You can read this blog and others like it at the HealthCentral website.
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.
Clarke
You can read this blog and others like it at the HealthCentral website.
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