The Patient Protection and Affordable Care Act is now Public Law 111-148. The Health Care and Education Reconciliation Act (HR 4872) was signed into law on March 30. Through these two pieces of legislation, Congress and President Obama have succeeded in enacting comprehensive health reform.
On August 13, 2009, 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 13.
CHADD’s 13 principles and their enactment status are as follows:
1. Provide health care coverage for all Americans
The Congressional Budget Office (CBO), the financial scorekeeper for the Congress, estimates that health reform will cover 32 million currently uninsured Americans by 2019. However, CBO also estimates that 23 million Americans will remain uninsured by 2019. The 2019 uninsured group includes seven million undocumented immigrants and 16 million who will choose not purchase insurance, despite the individual mandate to purchase insurance.
Health reform requires all Americans to purchase insurance by 2014, with financial penalties assigned to those who don’t. Penalties are $95 in 2014; $325 in 2015; $695 in 2016 and indexed thereafter. However, low-income individuals who would have to spend more than 8 percent of their salaries for health insurance are not subject to the penalty. People who make too little to file an income tax return also are excused ($18,700 for a couple). A number of the young, healthy people may prefer to pay the $95 fine in 2014 rather than purchase insurance. Health-plan enrollment by these individuals would likely increase as the penalty amount increases to $695 (or 2.5 percent of the person’s income, whichever is higher) in 2016. A coalition of state attorney generals have filed lawsuits challenging the constitutionality of the individual mandate.
Health reform expands Medicaid mandatory eligibility to 133 percent of the federal poverty level in 2014 ($29,327 for a family of four). Ninety days after enactment, persons who have no access to insurance because of pre-existing condition exclusions could have their insurance premiums paid by a new “National High Risk Pool.” These pools would terminate upon the enactment of “insurance exchanges.”
Health reform mandates that states establish state-based health insurance exchanges for individuals and small businesses by 2014. Income tax credits would be available for persons with incomes less than 400 percent of the poverty level ($88,200 for a family of four) to purchase insurance.
2. Require “parity” for mental health assessment and treatment, including prohibiting non-discrimination between health conditions
Health reform extends the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (P.L. 110-343) protections to all health plans in the exchanges, as well as all commercial plans currently covered. Mental health and substance abuse benefits, to be defined by regulation, are also part of the mandatory “essential” health benefits package.
3. Prohibit discrimination on the basis of pre-existing conditions
Health reform requires that for plan years beginning on or after six months from enactment, health plans may not discriminate on the basis of pre-existing conditions for children. However, media stories have already identified a conflict between interpretations of this prohibition by insurers and by the Obama administration. Both the insurers and the administration agree that for children offered insurance, the plans must cover pre-existing conditions. The insurers argue that the law does not require them to issue health plan coverage for children with pre-existing conditions. Any children and others denied coverage for pre-existing conditions would be eligible for assistance in the National High Risk Pool to be established within 90 days of enactment.
In 2014, all pre-existing condition exclusions would be prohibited.
4. Prohibit health plans from 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) and lifetime limits are prohibited, effective for plan years beginning on or after six months after enactment.
5. Prohibit exorbitant out-of-pocket deductibles and co-pays
This goal is difficult to define and subject to lots of debate. The Department of Health and Human Services and the National Association of Insurance Commissioners would define by regulation what constitute “unreasonable” premiums, deductibles, and co-pays. There is much debate about the affordability of the premiums and subsidies.
6. Allow young adults to stay covered on their parents’ plan until the age of 26
Effective for plan years beginning on or after six months after enactment, health reform requires insurers to allow young people to stay on their parents’ policies through age 26.
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 2014.
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 2014.
9. Require continued affordable coverage when one loses or changes jobs
Health reform requires guaranteed issue and renewal, effective 2014. Individuals and families who purchase coverage through the exchanges will not be stuck with their employer’s health plan or subjected to losing coverage due to loss of job.
10. Include wellness and prevention services
Health reform creates a Prevention and Public Health Fund, which will provide for expanded and sustained national investment in prevention and public health programs to improve health and help restrain the rate of growth in private and public sector health care costs. The Fund provides mandatory funding, over the fiscal year 2008 level, for programs authorized by the Public Health Service Act, for prevention, wellness, and public health activities including prevention research and health screenings. It is important to note that, for fiscal year 2010, $500 million will be appropriated for the aforementioned initiatives. Additionally, Health reform instructs the HHS Secretary to plan and implement a national public-private partnership for a prevention and health promotion outreach and education campaign to raise public awareness of health improvement across the life span. Health plans are required to include annual wellness visits.
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
Health reform creates state grants for community-based health teams to support implementation of patient-centered medical homes and allocates funds to state Medicaid programs to implement such medical homes.
12. Allow consumers a choice of health plans
Health reform establishes state-based health insurance exchanges for individuals and small businesses by 2014. Income tax credits would be established for persons with incomes less than 400 percent of the poverty level ($88,200 for a family of four) to purchase insurance.
13. Include culturally and linguistically appropriate programs that affirmatively address racial and ethnic disparities, including the recognition of disability-based health disparities
Federally conducted and supported health care programs must collect data on race, ethnicity, sex, primary language, and disability status. A population is considered a health disparity population if there is a significant disparity in disease incidence, prevalence, morbidity, mortality, or survival rates or in quality, outcomes, cost, use of health services, or satisfaction with health services compared to the general population. Health plans and health providers are then required, albeit with federal financial assistance, to address these disparities.
Health plans in the health insurance exchanges are to conduct public education activities, including those that are culturally and linguistically appropriate for the needs of the population to be served. Federal grants will be available to promote shared decision-making between patients and professionals including trade-offs among treatment options, patient preferences, and patient values.
Conclusion
While many disagree about the appropriate role of the federal government in health care, the individual mandate, and the financial impact of taxes and fees, people with ADHD and related and co-occurring disorders should directly benefit from health reform. Individuals who have faced discrimination and lack of insurance coverage because of their disability would benefit from health reform. While issues of affordability continue to be confusing and controversial, health reform makes the most significant progress toward universally affordable and appropriate health insurance in generations.
Clarke
Wednesday, March 31, 2010
Thursday, January 28, 2010
Promoting Employment of Adults with AD/HD to the SSA
I am pleased to share a message from public policy specialist Cindy Smith on CHADD’s efforts to promote employment for adults with AD/HD. My 19-year-old son is in a post-high school program. He is struggling with getting to class and obligations on time, bringing all the materials necessary to learn and participate, and effectively organizing his time. Many young adults have these challenges. But if the daily and weekly challenges continue—even with supports—there is a disability factor involved. My son has had these substantial challenges his entire life.
Three CHADD volunteers—a young woman with AD/HD, an educator teaching adults in a community college setting, and a physician specializing in the diagnosis and treatment of AD/HD—recently testified to the Social Security Administration on accommodations needed by some adults with AD/HD in order to become and remain meaningfully employed. Chronic and substantial inattention and executive functioning challenges can be disabling and should be so recognized by the SSA. I am proud to share Cindy’s summary of CHADD’s advocacy efforts with the SSA.
Clarke
CHADD Provides Comments to Social Security Administration Advisory Panel
On January 20 and 21, 2010, three members of CHADD’s public policy committee provided public comment to supplement CHADD’s written recommendations at the quarterly meeting of the Occupational Information Development Advisory Panel (OIDAP). In addition to discussing their personal and family experiences with AD/HD, they explained how executive functioning skills, including the ability to sustain attention, can impact the ability to be gainfully employed. This is the first time CHADD has provided comment to an advisory panel convened by the Social Security Administration.
A subset of adults with AD/HD is unable to be gainfully employed because of the chronic, substantial inattention and executive functioning challenges caused by the disorder. CHADD is working to have the SSA recognize AD/HD as a disability that can inhibit the ability to work, and to ensure that reasonable job accommodations and supports are available for individuals who cannot engage in substantial and meaningful employment without them.
The OIDAP was formed on December 9, 2008, and charged with providing “independent advice and recommendations on plans and activities to replace the Dictionary of Occupational Titles currently used in the Social Security Administration’s (SSA) disability determination process.” The OIDAP has been working on meeting its charge, and recently published a summary of its work and recommendations in a report titled Content Model and Classification Recommendations for the Social Security Administration Occupational Information System (PDF).
Visit CHADD’s public policy webpage to see what CHADD is doing to advocate for adults with AD/HD and how you can help.
You can read this blog and others like it at the HealthCentral website.
Three CHADD volunteers—a young woman with AD/HD, an educator teaching adults in a community college setting, and a physician specializing in the diagnosis and treatment of AD/HD—recently testified to the Social Security Administration on accommodations needed by some adults with AD/HD in order to become and remain meaningfully employed. Chronic and substantial inattention and executive functioning challenges can be disabling and should be so recognized by the SSA. I am proud to share Cindy’s summary of CHADD’s advocacy efforts with the SSA.
Clarke
CHADD Provides Comments to Social Security Administration Advisory Panel
On January 20 and 21, 2010, three members of CHADD’s public policy committee provided public comment to supplement CHADD’s written recommendations at the quarterly meeting of the Occupational Information Development Advisory Panel (OIDAP). In addition to discussing their personal and family experiences with AD/HD, they explained how executive functioning skills, including the ability to sustain attention, can impact the ability to be gainfully employed. This is the first time CHADD has provided comment to an advisory panel convened by the Social Security Administration.
A subset of adults with AD/HD is unable to be gainfully employed because of the chronic, substantial inattention and executive functioning challenges caused by the disorder. CHADD is working to have the SSA recognize AD/HD as a disability that can inhibit the ability to work, and to ensure that reasonable job accommodations and supports are available for individuals who cannot engage in substantial and meaningful employment without them.
The OIDAP was formed on December 9, 2008, and charged with providing “independent advice and recommendations on plans and activities to replace the Dictionary of Occupational Titles currently used in the Social Security Administration’s (SSA) disability determination process.” The OIDAP has been working on meeting its charge, and recently published a summary of its work and recommendations in a report titled Content Model and Classification Recommendations for the Social Security Administration Occupational Information System (PDF).
Visit CHADD’s public policy webpage to see what CHADD is doing to advocate for adults with AD/HD and how you can help.
You can read this blog and others like it at the HealthCentral website.
Wednesday, January 13, 2010
Health Exchanges: What Are They?
The healthcare reform legislation now separately approved by the House and Senate contains a new mechanism—health exchanges—for persons not working for large employers and not on Medicaid, Medicare, or other public programs to purchase health insurance. Working adults with AD/HD with modest incomes who not employed by large employers will look to health exchanges to purchase insurance. Enactment of the healthcare reform legislation would result in an estimated 30 million Americans receiving health insurance through exchanges. As a small employer (25 employees), CHADD would likely turn to an exchange for our health insurance.
What are health exchanges and how will they work?
A health exchange is a government-sponsored or authorized organized market for purchasing health insurance. Examples of existing exchanges are the Federal Employee Health Benefits Program (FEHBP), Massachusetts Health Connector, Connecticut Business and Industry Association Health Connections, and the Utah Health Exchange. Exchanges created in California, Florida, and Texas have closed, as they were not financially viable as structured. Governments do not operate these exchanges; rather, governments sponsor or authorize them.
I don’t want to scare people, but exchanges are based on the Clinton administration-proposed managed-competition philosophy, where preregistered and preapproved private insurance companies compete for enrollees based on publicly stated measures of price, benefits, provider networks, consumer satisfaction surveys, and in theory, quality. At a seminar I attended last week in Washington, DC, the CEOs of the Massachusetts and Connecticut exchanges stated that quality is not yet a factor in their exchanges. Only preapproved health plans meeting standards and requirements may compete in an exchange.
Exchanges would prior-approve health plans. Under healthcare reform, plans would have to deliver standardized benefits and would have to ensure practices such as guaranteed coverage and renewal (thus prohibiting pre-existing condition exclusions) and establish publicly known and regulated premiums.
There are major differences between the House and Senate legislation around exchanges: how much national government control and authority versus how much state government; how much public disclosure and transparency by health plans; how much authority to require risk pools and risk adjustments; how much authority to limit-regulate premiums. There are also differences in whether individuals who are not part of small group plans would use the exchange or some other mechanism to purchase health insurance. And, a larger issue of congressional healthcare reform is the affordability and amount of subsidy for people with modest incomes.
The seminar on exchanges was conducted by the Alliance for Health Reform and financed by the Commonwealth Fund and the Kaiser Family Foundation. The Alliance for Health Reform has posted a webcast, podcast, and videos of the seminar for anyone interested in learning more.
I hope this is helpful.
Clarke
You can read this blog and others like it at the HealthCentral website.
What are health exchanges and how will they work?
A health exchange is a government-sponsored or authorized organized market for purchasing health insurance. Examples of existing exchanges are the Federal Employee Health Benefits Program (FEHBP), Massachusetts Health Connector, Connecticut Business and Industry Association Health Connections, and the Utah Health Exchange. Exchanges created in California, Florida, and Texas have closed, as they were not financially viable as structured. Governments do not operate these exchanges; rather, governments sponsor or authorize them.
I don’t want to scare people, but exchanges are based on the Clinton administration-proposed managed-competition philosophy, where preregistered and preapproved private insurance companies compete for enrollees based on publicly stated measures of price, benefits, provider networks, consumer satisfaction surveys, and in theory, quality. At a seminar I attended last week in Washington, DC, the CEOs of the Massachusetts and Connecticut exchanges stated that quality is not yet a factor in their exchanges. Only preapproved health plans meeting standards and requirements may compete in an exchange.
Exchanges would prior-approve health plans. Under healthcare reform, plans would have to deliver standardized benefits and would have to ensure practices such as guaranteed coverage and renewal (thus prohibiting pre-existing condition exclusions) and establish publicly known and regulated premiums.
There are major differences between the House and Senate legislation around exchanges: how much national government control and authority versus how much state government; how much public disclosure and transparency by health plans; how much authority to require risk pools and risk adjustments; how much authority to limit-regulate premiums. There are also differences in whether individuals who are not part of small group plans would use the exchange or some other mechanism to purchase health insurance. And, a larger issue of congressional healthcare reform is the affordability and amount of subsidy for people with modest incomes.
The seminar on exchanges was conducted by the Alliance for Health Reform and financed by the Commonwealth Fund and the Kaiser Family Foundation. The Alliance for Health Reform has posted a webcast, podcast, and videos of the seminar for anyone interested in learning more.
I hope this is helpful.
Clarke
You can read this blog and others like it at the HealthCentral website.
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.
Clarke
You can read this blog and others like it at the HealthCentral website.
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.
Clarke
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.
Clarke
You can read this blog and others like it at the HealthCentral website.
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.
Clarke
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.
Clarke
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
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.
Clarke
You can read this blog and others like it at the HealthCentral website.
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.
Clarke
You can read this blog and others like it at the HealthCentral website.
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