I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
Americans for Prosperity, a conservative group that opposes the federal health care overhaul, began robocalls statewide Monday targeting Bill Howell, the powerful speaker of the House of Delegates, for his support of a bill to provide insurance coverage for children with autism.
The calls to the group's 80,000 Virginia members began Monday afternoon and will run through this week's House vote.
"To rail against the mandates in Obamacare then turn around and support mandates in the state level is nothing short of hypocrisy,'' said Ben Marchi, the group's state director.
As we reported earlier, Howell (R) has put his considerable weight behind the bill that would require businesses to provide insurance coverage for children with autism after failing to support similar proposals in past years.
Americans for Prosperity was founded by David H. Koch of Koch Industries. Koch and his wife, Julia, are major GOP contributors: They have donated more than $2 million to federal candidates and party organizations since 1990, according to the nonpartisan Center for Responsive Politics. Koch also ran for vice president on the Libertarian Party ticket in 1980, and currently serves on the board of the Cato Institute, a libertarian think tank, according to his biography on the AFP website.
The group’s president is Tim Phillips, a Republican campaign strategist who helped organize tea party protests. Directors of the organization include Art Pope, a former North Carolina congressman, and James Miller, former chairman of the Federal Trade Commission and budget director under President Ronald Reagan.
AFP is registered under the IRS code as a 501(c)(4) — meaning it does not have to disclose its donors. The Wall Street Journal said "some of the group’s funding comes from" Koch. Donations to the group are not tax-deductible.
Dr. Paul Offit is an immunologist whose books, articles and media appearances have placed him at the center of the autism-vaccine controversy. Offit has argued for years that vaccines have no relationship to the rise in autism spectrum diagnoses, and his point of view has earned him avid supporters as well as death threats. On Monday night, he will appear on Stephen Colbert's tongue-in-cheek "news" comedy, The Colbert Report to speak about his new book, "Deadly Choices: How The Anti-Vaccine Movement Threatens Us All". The show will air on Comedy Central, January 31st at 11:30 EST (the interview will take place toward the end of the program).
One can guess at how the program will go from Colbert's June interview with Michael Specter, author of "Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives,"
An expert panel advising the Food and Drug Administration decided Friday that electroconvulsive therapy (ECT) machines should undergo the same rigorous testing as new medical devices coming onto the market - a decision that could drastically affect the future of psychiatry's most controversial treatment.
The majority of the 18-member committee said not enough is known about ECT, also known as "electroshock" or simply "shock" therapy, to allow the devices to be used without more research into its usefulness and hazards.
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About 100,000 Americans undergo ECT each year, usually getting about a dozen treatments over several weeks. Some then get "maintenance" ECT every few weeks, as the therapeutic effect, when it occurs, often doesn't last. The treatment is most often used for depression and has also been prescribed to patients with schizophrenia, catatonia, and more recently, to some violent children with autism.
Hamstrung by federal prohibitions against lowering Medicaid eligibility, governors from both parties are exercising their remaining options in proposing bone-deep cuts to the program during the fourth consecutive year of brutal economic conditions.
Gov. Andrew Cuomo of New York is expected to propose at least $2 billion in cuts in his budget.
Because states confront budget gaps estimated at $125 billion, few essential services — schools, roads, parks — are likely to escape the ax. But the election of tough-minded governors, the evaporation of federal aid, the relentless growth of Medicaid rolls and the exhaustion of alternatives have made the program, which primarily covers low-income children and disabled adults, an outsize target.
Nick’s Law would have provided insurance coverage for the early diagnosis testing of autism and medications until the child becomes 21 years of age. A financial cap would have covered $50,000 of behavioral therapy per year without lifetime caps in the House plan.
State Rep. Mike Brown, D-Tahlequah, has filed HB 1624 to bring Nick’s Law to a vote of the people. With a large favorable response from a SoonerPoll last year showing 79.5 percent of all Oklahomans favoring passing of this measure.
A state actuarial report determined that Nick’s Law could raise insurance premiums from 7.8 percent to 19.8 percent.
In 2007, the Council for Affordable Health Insurance, a research and advocacy association of insurance carriers, reported insurance mandates regarding autism will have little impact on the cost of health insurance premiums for consumers. The report assessed the incremental cost of state-mandated benefits for autism in 10 states would be less than 1 percent.
The Oklahoma State Education Employees Group Insurance Board announced its own study revealed that Nick’s law would have 1 percent or less impact on claims.
State Rep. Randy Grau, R-Edmond, has introduced coverage for autism and related disorders through the state’s high risk insurance pool.
“There’s been talk for years about trying to mandate coverage for private insurance and I think this is the best solution because it will give families one place to come where they can get coverage for their children,” Grau said.
The High Risk Pool was created by the Legislature in 1995 to serve those who have been denied health insurance due to a serious health condition.
Grau and his wife have been friends with Eric Littleton’s family for several years, having worshiped together at church. One of Eric’s twin 7-year-old sons contracted Landau-Kleffner syndrome in 2008.
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State Rep. Jason Murphey, R-Guthrie, said he would need to study the specifics of HB 1248 before supporting it.
Murphey said he was an avid supporter last year of a bill by state Rep. Jason Nelson, R-Oklahoma City, that was signed into law. Murphey said HB 3393 allows families to receive assistance they need through a school choice voucher program.
“Since so much of the treatment is behavioral and not so much medical I feel this is a great approach,” Murphey said.
Littleton said HB 3393 is well intentioned but he has not found a school in Oklahoma County that is willing to accept Solomon with HB 3393.
With the powerful backing of Speaker of the House William J. Howell, R-Stafford, a bill to mandate coverage of autism disorders passed Thursday in a House of Delegates committee that had killed it in previous sessions.
The bill was limited to apply to children from ages 2 to 6, to cap annual costs at $35,000 and to apply to businesses that employ more than 50 people and are not self-insured. It also covers public employees.
Tammy Gilbert might have to make a choice no parent should: Does the Spartanburg mother give up her child or does she quit working so she can take care of her daughter?
State budget cuts to Medicaid and other programs are forcing those kinds of choices on Gilbert and, she said, thousands of other South Carolina families. Gilbert's daughter, Paige Lynn Taylor, has autism, mental retardation and cerebral palsy.
“I am here to ask you to protect her as the 7-year-old her mind is, not the 21-year-old her body is,” Gilbert said Wednesday before the House Ways and Means Subcommittee on Health and Human Services.
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More than 120 children and adults with mental or physical disabilities sat before the House subcommittee Wednesday. McCarthy Teszler School Principal Cheryl Revels, who has two special-needs children of her own, and Charles Lea Center Executive Director Jerry Bernard also testified, saying services that directly affect the lives of people with disabilities are, in fact, essential.
“In the long run, we are not saving money,” Revels said. “The children are not going to have the opportunity to develop skills necessary to be independent individuals of society. And we will be paying for them down the road.”
Revels pleaded with the four legislators in front of her — state Reps. Brian White, Harry Ott and Bill Herbkersman of the subcommittee, and Rep. Harold Mitchell of Spartanburg. Mitchell helped arrange the visit.
“It's real good for my colleagues to see the faces of the cuts that they're making,” Mitchell said in an interview.
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“One of our biggest challenges, with the budget, with all the demands we have and the mandates, is taking care of the vulnerable folks that we have,” said White, an Anderson Republican and subcommittee chairman. “I don't think it's the intention of anybody to not fill that need. It is truly a need, and they are blessed children. They are God's creation, and we need to take care of them.”
About 31,000 South Carolinians depend on Medicaid and the Department of Disabilities and Special Needs, Revels said.
Assembly Bill 171 Would End Health Care Discrimination Against Children with Autism by Requiring Coverage of Diagnosis and Treatment
NEW YORK, NY (January 25, 2011) – Autism Speaks joined today with members of the Alliance of California Autism Organizations (ACAO), families and other autism advocates to announce its support for Assembly Bill 171, the autism insurance reform bill. The legislation would require private health insurance companies to cover the screening, diagnosis, testing, and treatment of individuals with autism spectrum disorder (ASD).
Sponsored in the California State Assembly by State Assembly Member Jim Beall Jr., AB 171 includes coverage of behavioral health treatments, such as Applied Behavior Analysis (ABA), an evidence-based, medically-necessary autism therapy. The bill contains no caps on age, number of visits to a service provider, or annual dollar maximum.
“We applaud and thank Assembly Member Beall for his leadership on this issue of critical concern to thousands of California families,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Autism Speaks is thrilled to work in unison with California’s autism community at large through the Alliance of California Autism Organizations in calling on the legislature to pass AB 171 and join the growing number of states that have ended healthcare discrimination against children with autism.”
Many states do not require private insurance companies to cover even essential autism treatments and services. In the absence of coverage, families often pay as much as they can out-of-pocket for services that can cost upwards of $50,000 per year. In the process, many risk their homes and the educations of their unaffected children – essentially mortgaging their entire futures.
“After so many years of work on autism insurance reform legislation as part of a united autism community in California, it is exciting to finally see this legislation move forward,” said Kristin Jacobson, Autism Speaks California Chapter Advocacy Chair. “It is an honor to work with the Alliance of California Autism Organizations to help bring about an end to health insurance discrimination against individuals with autism. As an advocate that has worked with so many families struggling to get insurance coverage for treatment, I know that this bill will help thousands of families like these across the state.”
To date, twenty-three states – Arizona, Colorado, Connecticut, Florida, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, Pennsylvania, South Carolina, Texas, Vermont, and Wisconsin – have enacted autism insurance reform legislation. Several other state legislatures will introduce similar legislation during the current 2011 session.
The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.
I’ll tell you more about the threat, but first, here’s what I’m asking you to do:
· Come to Sacramento on Thursday, February 3, and Thursday, February 10, the dates of the Legislature’s only public hearings on the developmental services budget. We need to fill the hearing rooms with people who are ready to tell the legislators what the real effect of the earlier cuts has been and what the likely categorical reductions and service eliminations would mean to them and the ones they love.
· Call your local state senator and assemblymember this week and give them the same message.
The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.
In developmental services, that would mean cuts to services of more than three quarters of a billion dollars—real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.
It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. The state could eliminate all the regional centers’ operating budgets and still not cut that much.
We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”
“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”
Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically. Let the policymakers know how the services and supports benefit you and the real consequences to your life and the lives of your family members.
Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear.
Here is the best information I have as of today on the committees’ public hearings:
· Assembly Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 3, Room 4202, State Capitol, Sacramento. · Senate Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 10, Room 4203, State Capitol, Sacramento.
All too often, though, community programs for people with autism are simply dead ends. They don't provide a stepping stone or scaffolding to help the child, teen or family with autism build the skills to join the general community. Families can take part in these special programs, or not. But there's no support for or interest in taking the next step - or even in creating programs to support families with older or adult children on the autism spectrum.
I just got off the phone with a representative of a music education program for children with autism - a wonderful idea, in theory. She seemed offended, however, when I asked whether autistic music students perform at recitals with typical music students. She seemed very uncomfortable with the thought that her instructors might facilitate inclusion of autistic music students in typical school bands. Every aspect of the music program is, apparently, hermetically sealed off from the rest of the world.
I've seen many sports programs available only to young children with autism. These programs, run by well-meaning adults, are specifically geared to teaching social skills rather than sports skills. There's no interaction between the "special" and the "typical" youth sports directors. As a result, when the children age out of such programs they're no more able to play a typical sport than they were before they started. And now, as they begin to enter their teen years, they have no place to go.
Seems there's a whole lot of misconduct going on in the world of science. The latest scandal showed that research linking MMR vaccines with autism is a sham, and it's not alone.
An investigation reports that one in seven scientists know colleagues who fake scientific findings, according the University of Edinburgh, while nearly half know of colleagues who engage in questionable practices. Only 2% of researchers polled own up to unethical misconduct - that number is probably higher, investigators report in the journal PLoS One.
An Acadia Institute survey states 50% of faculty and 43% of graduate students have "direct knowledge" of scientific wrongdoing, including fraud, falsification and plagiarism, in their labs.
"This was a house of cards," said Jay M. Lieberman, MD, referring to Dr. Wakefield's research. Dr. Lieberman is professor of clinical pediatrics at the University of California, Irvine School of Medicine and medical director of infectious diseases at Quest Diagnostics Inc. "It just took a decade to understand what fully happened and to expose the complete lack of science behind it and, indeed, the fraud." ...
Physicians definitely should steer clear of chastising worried parents, said Ari Brown, MD, an Austin, Texas, pediatrician and co-author of Baby 411: Clear Answers and Smart Advice for Your Baby's First Year.
"Doctors need to remember that these are not bad parents -- they are scared parents, and there is a difference," Dr. Brown said. "Don't make your interactions leave the parent feeling like they are a bad parent for not vaccinating or waiting to vaccinate. ... Parents just want to feel like they are doing all they can to protect their child."
Dr. Brown said concern about vaccines seemed to peak in about 2008 in her practice, and that the tide has begun to turn since then.
"It's been a long decade," she said. "Hopefully, we can close this chapter and move on and have more parents feeling confident in vaccinating their kids."
The MMR autism scare went on for so long because of a series of denials and a failure to properly look into Dr. Andrew Wakefield's misconduct allegations regarding his 1998 Lancet paper, writes Dr. Fiona Godlee, Editor in Chief, BMJ (Brtitish Medical Journal). This third and final part of a special BMJ series "Secrets of the MMR Scare" urges the British government to "establish mandatory oversight of clinical research integrity within the NHS, as happens for publicly funded research in the USA."
The three parts of this BMJ series were written by respected investigative journalist Brian Deer. He writes that the medical establishment closed ranks to protect their fellow health care professional - Dr. Wakefield - after Deer raised concerns in 2005 regarding the Lancet paper.
The state Department of Developmental Services has placed on probation the largest of 21 publicly funded regional centers serving developmentally disabled people, saying it illegally used state money to develop housing, violated the center's contract with the state and circumvented a statutory freeze placed on rates paid to care providers.
The department sent a letter dated Jan. 19 about its actions to the center's board in Southern California.
Its demands include requiring the center to complete an inventory of all state property it maintains, analyze all purchase-of-service funds used for housing services and improve "the culture within the organization which has discouraged employees from raising issues for fear of intimidation and retaliation." The department demands most of the corrective action be completed by March 31.
The letter followed a Jan. 2 Bee story investigating the real estate practices of the regional center – which serves Riverside and San Bernardino counties – and its nonprofit housing affiliate, the California Housing Foundation.
Department spokeswoman Nancy Lungren said the center's failure to comply with the letter's demands could produce punishment ranging from further warnings to the termination of its contract.
"These are very serious matters, and (the department) will work with Inland Regional Center to ensure that it comes into compliance," Lungren said.
Malissa Bossardet, of Fenton, will visit Michigan’s capital to talk with legislators about health insurance coverage to help children with autism. Currently, health insurance in Michigan doesn’t cover therapies for autism.
“I am very passionate about this,” Bossardet said. “This has affected my child.”
Rep. John Gleason (D-Flushing) said he co-sponsored some of the legislation to provide health insurance coverage for autism. He supports the measure “1,000 percent.” “If your child is hurt from the brain down, you can get them fixed,” Gleason said. “If your child has an ailment with their mind, you can’t get coverage.
“It’s almost scandalous that we leave these children uninsured. It is a handicap for the parents.”
Legislation for autism coverage has strong bipartisan support, he said. “I’m very confident it will be passed this year.”
“We picked up the challenge and the cost to eradicate polio,” Gleason said. “There is no reason not to have the same level of compassion and effort for autism.”
The cost for health insurance shouldn’t increase as a result, he said. Early intervention for children with autism will let them get on with their lives and prove much less expensive. They can go to work and become taxpayers instead of tax takers, like a young man Gleason met in Flint who handles his autism and is now a working, responsible citizen, Gleason said.
It’s the moral obligation for those in office, and those who are not, to take care of sick kids, he believes. In the area he represents, people join together to hold fundraisers and help others whose homes have burnt down, or who have a child with cancer. It’s a social contract between everyone to make life easier, he said.
“We’ve fought this fight long enough,” Gleason said. “These families have waited. Now it’s time to let them be part of the insurance pot.”
Michigan bills on health insurance coverage of autism
House Bill 4476 sponsored by Rep. Kathy Angerer House Bill 4183 sponsored by Rep. Richard Ball
Requires private health insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder (Autism, Asperger Syndrome, Rett’s Syndrome). HB 4476 applies only to plans issued by BlueCross BlueShield. HB 4183 applies to other insurance company plans. These bills would require insurance companies to cover up to $50,000 for Applied Behavior Analysis (ABA) therapy.
Michigan families with means pay $10,000 to $75,000 a year for treatment of autism, while children whose families do not have such financial resources are left out in the proverbial cold. Estimates of the additional costs to add autism coverage to insurance plans run 1-3 percent per year.
Experts say early intervention is critical when treating autism. The difference is between a person who learns to live and work in society (and pay taxes), or one who needs lifelong care provided by the taxpayers of our state. That difference could be a $14 billion savings.
It's time Michigan invested a little in these kids futures, for all our sakes.
[P]ublic fear of vaccines did not originate with Dr. Wakefield’s paper. Rather, his claims tapped into a reservoir of doubt and resentment toward this life-saving, but never risk-free, technology.
Vaccines have had to fight against public skepticism from the beginning. In 1802, after Edward Jenner published his first results claiming that scratching cowpox pus into the arms of healthy children could protect them against smallpox, a political cartoon appeared showing newly vaccinated people with hooves and horns.
Nevertheless, during the 19th century vaccines became central to public-health efforts in England, Europe and the Americas, and several countries began to require vaccinations.
Such a move didn’t sit comfortably with many people, who saw mandatory vaccinations as an invasion of their personal liberty. An antivaccine movement began to build and, though vilified by the mainstream medical profession, soon boasted a substantial popular base and several prominent supporters, including Frederick Douglass, Leo Tolstoy and George Bernard Shaw, who called vaccinations “a peculiarly filthy piece of witchcraft.”
In America, popular opposition peaked during the smallpox epidemic at the turn of the 20th century. Health officials ordered vaccinations in public schools, in factories and on the nation’s railroads; club-wielding New York City policemen enforced vaccinations in crowded immigrant tenements, while Texas Rangers and the United States Cavalry provided muscle for vaccinators along the Mexican border.
Legislation requiring private health insurers to help pay for critical services and programs for children and adults with autism and related disorders was introduced today by Assembly Member Jim Beall, D-San Jose.
Assembly Bill 171 not only ensures more Californians with autism and related disorders will receive the services they need but it also saves taxpayer dollars by stopping insurers from continuing to shift their costs onto public agencies.
AB 171 is sponsored by the Alliance of California Autism Organizations (ACAO) which is comprised of over 40 California parent founded and supported local, state, and nationally based autism advocacy and support organizations and their local chapters.
The Virginia Autism Project is hoping the General Assembly will take up Autism insurance reform.
The VAP website lists two bills the group is supporting this year. SB 1061 - Coverage for Autism Spectrum Disorder; relating to the state employee health benefit plan. This bill only covers state employees. SB 1062 - Relating to health insurance coverage for Autism Spectrum Disorder. This bill excludes state employees.
Michigan lawmakers are renewing efforts to require the offering of insurance coverage for certain autism treatments.
Bills were introduced this week in the state Senate. Democratic Sen. Tupac Hunter of Detroit said Thursday the insurance coverage is needed to help families that can't afford the costs of certain autism treatments for their children.
A bill introduced Thursday in the West Virginia Legislature would require insurance companies - including state insurance plans - to pay for research-based medical treatment of children with autism spectrum disorders.
If it passes, West Virginia would join more than 30 other states in requiring treatment coverage for the neurological disorder that, according to the Centers for Disease Control and Prevention, affects one in 110 Americans.
The measure could save Wally and Tamara Aman of Wheeling more than $70,000 a year. That's about how much it costs the couple to send their twin 3-year-old boys - both with autism - to the Augusta Levy Learning Center in Wheeling. At the nonprofit facility, they receive an intensive research-based form of one-on-one therapy called applied behavioral analysis.
Sen. Orphy Klempa, D-Ohio, is among the sponsors of the bill, and he terms the push for funding of autism care in the state "a worthy cause."
But Klempa - also a member of the Senate Finance Committee - said any provision requiring insurance plans to cover autism care also would apply to state medical coverage plans and that lawmakers haven't yet found the funds in the state budget to pay for the coverage.
Just a slim majority of Americans -- 52 percent -- think vaccines don't cause autism, a new Harris Interactive/HealthDay poll found.
Conversely, 18 percent are convinced that vaccines, like the measles-mumps-rubella (MMR) vaccine, can cause the disorder, and another 30 percent aren't sure.
The poll was conducted last week, following news reports that said the lead researcher of a controversial 1998 study linking autism to the MMR vaccine had used fraudulent research to come to his conclusion.
The poll also found that parents who have lingering doubts about the vaccine were less likely to say that their children were fully vaccinated (86 percent), compared to 98 percent of parents who believe in the safety of vaccines. Still, the percentage of fully vaccinated children remains high, at 92 percent, the poll found.
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In the new Harris Interactive/HealthDay poll, 69 percent of respondents said they had heard about the autism-vaccination theory -- but only half (47 percent) knew that the original Lancet study had been retracted, and that some of that research is now alleged to be fraudulent.
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The new poll -- an online survey of 2,026 adults carried out Jan. 11-13, 2011 -- was done by Harris Interactive, one of the world's leading custom market research firms, and HealthDay, a leading producer and syndicator of health news.The complete findings of the newest joint Harris Interactive/HealthDay poll are available here . HealthDay's news report is available here . Full data on the poll and its methodology are available at Harris Interactive .
Of note: Rolling Stone deleted the story from its site sometime last year, without notice or explanation. That link now has a 404 error. However, it has been archived at WebCitation.org.
As it happens, one of us (Ivan) is here in Research Triangle Park, North Carolina, for Science Online 2011, and so is Seth Mnookin, whose book Salon credited in their retraction. We asked Mnookin for his thoughts on it. (Full disclosure: Ivan and Seth are friends from college, and they’ll be talking about his book on a Reuters webcast on Tuesday, Jan. 18.)
He applauded Salon’s move, and contrasted it with Rolling Stone’s handling of criticism. In particular, he pointed Retraction Watch to a note Rolling Stone had attached to their version on July 14, 2005, about a month after it was first posted:
What is most striking is the lengths to which major media outlets have gone to disparage the story and to calm public fears — even in the face of the questionable science on the subject. In a segment on World News Tonight titled “A Closer Look,” ABC pointed out that Kennedy is “not a scientist or a doctor” and dismissed his extensive evidence as nothing more than “a few scientific studies.” The network also trotted out its medical editor, Dr. Timothy Johnson, to praise the “impeccably impartial Institute of Medicine” and to again state that Kennedy is not a scientist.
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Mnookin tells Retraction Watch:
Salon didn’t do something like that. They printed the corrections, and didn’t start getting aggressive about the fact that 500 words of corrections made no difference in the underlying accuracy of the story.
Mnookin’s book, The Panic Virus, includes a whole chapter about piece. He went on:
There are so many problems with the story. It shows what can be done with the fig leaf of fact-checking. You can make a statement that is technically correct and fundamentally wrong. That’s what happened here. He was taking quotes ridiculously out of context. There was a transcript of hundreds of pages. The piece took quotes that were dozens of pages apart and connected them with an ellipsis.
What struck Mnookin was Rolling Stone’s refusal to admit error:
People make mistakes. It’s just a reality of life. This was with the perspective of five years of hindsight and fact-checking. I was just surprised that they would dig in their feet in ways that seemed self-defeating.
Autism Speaks, the world's largest autism science and advocacy organization, today announced a collaboration with the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to investigate the prevalence of autism spectrum disorders (ASD) in the Somali population located in Minneapolis, Minn. Autism Speaks is contributing funding to this project to be initiated in early 2011. The Autism Speaks funding will allow rapid deployment of the project.
“There have been concerns about higher prevalence of ASD in Minneapolis' Somali population. We believe it is important to verify if a true increase in prevalence exists, and if so, why it exists,” explained Autism Speaks' Chief Science Officer Geraldine Dawson, Ph.D. “In this circumstance Autism Speaks has both the resources and facility to allocate a budget to initiate this effort in a timely manner.”
In March 2009, the Minnesota Department of Health released a report that examined preschool program participation rates in the Early Childhood Special Education Programs of the Minneapolis Public Schools (MPS). Results showed that there were more children of Somali descent participating in the ASD special education programs than children from other racial and ethnic groups.
In October 2010, Somali parent and founder of the Somali American Autism Foundation, Idil Abdull, spoke at the Interagency Autism Coordinating Committee (IACC) meeting and asked that a systematic investigation of the prevalence of ASD in Somali children living in Minnesota be conducted. Subsequently, members of the committee decided to form a partnership to fund an investigation of this issue. While follow-up plans are still in the developmental stage, it is anticipated that the project will investigate prevalence of ASDs among a select population of children in Minneapolis using surveillance methods developed at the CDC.
Thomas Insel, M.D., Director of the National Institute of Mental Health and Chair of the IACC commented, “This shared effort between NIH, CDC, and Autism Speaks demonstrates how members of the IACC can respond quickly and cooperatively to an issue brought to the Committee by the public. An increased prevalence of ASD among this specific Somali population would represent both a scientific opportunity and an urgent public health need.”
If findings suggest that children of Somali descent have a higher ASD prevalence than children of other racial/ethnic groups, then future research will need to address what factors could account for the increase, such as factors related to immigration or nutrition. Such research could be of potential benefit in helping children with ASD of Somali background and understanding the causes of ASD.
The Minnesota Department of Health released a report in 2009 confirming higher rates of Somali-American kids participating in special education classes for children with autism in Minneapolis. But it's still unclear why.
It could be that Somali parents prefer to enroll their children in school-based programs, as opposed to seeking help from autism specialists in the medical community.
Last month, Andrew Wakefield -- who has been widely discredited for his controversial research claiming a link between childhood vaccinations and autism -- visited Minneapolis to gather data and money for research into autism rates among Somali-American children. [emphasis added]
Just weeks later, the British Medical Journal declared Wakefield an outright fraud for faking data.
An earlier post mentioned New Jersey Governor Chris Christie's proposal for autism schools. The New York Times reports that it has sparked debate:
“We’re horrified at this suggestion to have another segregated setting for children with autism in every county in New Jersey,” said Diana Autin, executive co-director of the Statewide Parent Advocacy Network, a nonprofit group that assists families. “It would also send a message to parents that children with autism can’t be included.”
But Linda Meyer, executive director of Autism New Jersey, a nonprofit advocacy and educational group, said Mr. Christie’s proposal for specialized autism schools would provide a much-needed alternative for some families. Many districts, she said, lack the staff, training and resources to educate children with autism.
“What I see is the governor has a vision to expand the continuum of options for our students,” Dr. Meyer said. “There are currently not enough high-quality school options for children with autism. Not every child is being educated in an effective program.”
Full circle, the question remains: public vs. private. Governor Christie must take into account the very impact of what the future holds for adults with autism. How can he prepare our children, both those with autism and without special needs? How can a foundation be built for advancing the futures of our children, if they are segregated, seen and not heard?
“As a society, we have an obligation to secure a brighter future for individuals with autism spectrum disorders. By taking action now, we can ensure that adults with autism break free of the all-too-common status of “dependency” and become engaged, involved and ideally, tax-paying, members of their communities. It is time to develop and drive policies that provide for life-long living and learning with autism.”
Creating segregated schools might be a self-fulfilling prophecy. Our children will be further isolated as the years go by. This is a problem that requires creativity and tenacity, on both sides of the table.
Cindy Lee Parker of Tuckerton said her 16-year-old son, Jacob, who has autism, has already changed schools a half-dozen or so times. The prospect of yet another move, to an untested county school, did not sit well with her.
"What model are you going to use, and who's going to set the standard for that?" she asked. "Who decides how each county is going to teach autistic children?"
Parker likened the plan to "shooting in the air and hoping we hit something."
Another critic of Christie's proposal was Deborah Lewinson, executive director and founder of the Allegro School, a private autism school in Cedar Knolls, Morris County.
Lewinson said a network of county schools inevitably would limit parents' access to private schools like hers, which have extensive experience and provide many after-school services that public schools can't match.
Lewinson, who has an adult autistic son, also doubts that county schools could do the job any cheaper than private schools. Allegro's annual tuition is $$82,352 per student.
The out-of-district tuition fee at Southern Regional High School in Stafford, where Jacob Parker is a student, is $85,000 per year.
"It's a very intensive, expensive program, no matter where you do it," Lewinson said, referring to the one-on-one instruction that many autistic students require.
But Maria Arnold, educational services director at the Douglass Developmental Center, which operates an autism school on the Rutgers University campus in New Brunswick, believes Christie's idea is worth exploring.
"There's such a large number of children being diagnosed on the spectrum, there are too many of them to serve, and not enough programs," Arnold said. "We turn children away, the private schools turn children away. It shouldn't really be a competition, it should be a partnership."
In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was "convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real."
The Institute of Medicine (IOM) is undertaking a study on “essential health benefits” that insurers must provide under the new health care law. Stuart Spielman, Senior Policy Advisor & Counsel for Autism Speaks, wrote at the organization's blog:
Twenty-three states have responded to the challenges faced by individuals with autism and their families by requiring comprehensive coverage. Cost analyses suggest that the long-term benefits of autism health insurance laws will be substantial relative to their modest cost, which is often estimated at less than .5% of premiums. Millions of Americans now rely on these laws to establish a standard of care.
Existing state autism insurance coverage laws remedy the failure of the market to provide effective coverage for a significant public health challenge. Judged by any standard – justice, cost to benefit, or maintaining quality care for a vulnerable population –these laws should be integral to a national essential benefit package.
In his presentation at IOM last week, Mr. Spielman provided some legislative history:
• Section 1302(b)(1) lists ten general categories of essential health benefits, including “Mental health and substance use disorder services, including behavioral health treatment” (section 1302(b)(1)(E)).
• The reference to behavioral health treatment was added by amendments in both chambers of Congress.
• The Congressional Budget Office (CBO) determined that Senator Menendez’s amendment did not require any cost offsets.
• The CBO concluded that the Menendez amendment clarified rather than expanded what the Senate Finance Committee Chairman’s Mark required, namely, mental health and substance abuse services that at least met minimum standards set by federal and state laws.
• In offering his amendment, Senator Menendez pointed out that behavioral health treatments “are critical for individuals affected by autism” as well as other conditions.
• Section 1302(b)(1)(E) should be understood as requiring behavioral health treatments for autism to be a part of each benefit package.
State coverage mandates that are not currently applied to individuals or small plans may nevertheless be enforced through the exchanges if they are defined as essential health benefits. Existing state mandates will not be pre-empted by the new healthcare legislation. For example, an increasing number of states are requiring insurance coverage of autism. Regardless of whether coverage of autism is deemed by federal regulators to be an essential mental health benefit, those state mandates will stand. If states require such coverage above federally-defined essential benefits for plans sold to individuals and small employers in the exchanges, funds will need to be contributed to help individuals cover the costs of those benefits.
It’s easy to tell the first Monday back after the New Year in the Government Relations department at Autism Speaks. It’s full of sparks as rockets start taking off in every possible angle in the race to introduce autism insurance reform legislation in the states. States spend all fall hammering out policy details, knitting coalitions and growing their grassroots advocates and then BANG! It’s off to the races. This mad pace continues throughout the first half of the year in the scramble to see whose states will achieve the objective this spring legislative session.
Earlier this week, Oregon entered the fray as the first state of 2011 to introduce autism insurance reform legislation with both a House and Senate version of the bill. Oregon has a legislative session that only meets during odd years. The team of volunteers in 2009 worked very hard but we just didn’t reach this objective. We know more now. We are armed with more data and more states have enacted legislation. Oregon’s volunteer leaders have spent time cultivating that fresh ground and sowing the seeds necessary for success.
Autism Speaks, the nation’s largest autism advocacy organization, today announced its support for House Bill 2214/Senate Bill 555, the autism insurance reform bill. The announcement marks Autism Speaks’ first state autism insurance reform bill endorsement of the 2011 legislative session and a continuation of the organization’s three year effort to end insurance discrimination against individuals with autism. The Oregon legislation would require private health insurance companies to cover the screening, diagnosis, testing and treatment of autism spectrum disorder (ASD).
Sponsored in the Oregon State House of Representatives by State Representatives Peter Buckley (District 5) and Jim Thompson (District 23) and in the Senate by State Senators Chris Edwards (District 7) and Suzanne Bonamici, HB 2214/SB 555 includes coverage of behavioral health treatments, such as Applied Behavior Analysis (ABA), an evidence-based, medically-necessary autism therapy. The bill also requires coverage of augmentative communication devices and other assistive technology devices.
In support of a coordinated Federal strategy for ASD research and services, the Combating Autism Act of 2006 reconstituted the Interagency Autism Coordinating Committee (IACC). Members include the above-listed HHS agencies (with the exception of AHRQ), the Department of Education and public members, including people with autism, parents of people with autism, leaders of national autism organizations, a researcher and a physician. This report provides a summary of the IACC’s efforts, in addition to those of individual Federal agencies, over the past four years. These collaborative and coordinated efforts have served well to identify promising ASD research areas as well as to pinpoint both best-practices and gaps in ASD research and supports. Recent highlights in ASD research include the development of new diagnostic tools, identification of novel genetic and environmental risk factors, clinical trials of interventions, and measures of the efficacy and cost-effectiveness of evidence-based services for people with ASD. In addition to descriptions of Federal ASD-related research and services-related efforts, this report also presents current ASD prevalence estimates, the present diagnostic and intervention landscape, ongoing efforts to identify gaps in and develop effective new ASD supports and services programs, and forward-looking strategies to address the continuing needs of diverse ASD communities.
Gov. Chris Christie said he is exploring a plan to develop a school in each county that specializes in educating children with autism.
Responding to a question during a town hall meeting Thursday in Paramus, the governor said the idea has merit because it would offer a cost-effective alternative to cash-strapped communities trying to create their own special education curriculum for these students.
The idea, if developed, would also help families who have to research on their own which school district has the best program. The governor described the schools as "centers for excellence" in each county.
"The parents in this community know which districts are the best districts and they move to those districts," Christie said. "We’re having that kind of selection happen naturally so why don’t we just do it? I’ll be working with the new Commissioner of Education on that."
The news came as a welcome surprise to Linda Meyer, executive director of Autism New Jersey, a family advocacy and research group.
"We know the governor has prioritized education reform for everyone,’’ Meyer said. "It sounds like he is aiming for equality and access for all. He wants to increase access, not just those who live in certain zip codes.’’
A week after calling research that first suggested a link between autism and vaccines an “elaborate fraud” a follow-up article in the British Medical Journal now says the researcher behind the study planned to make upwards of $43 million annually selling replacement vaccines and diagnostic products.
In the report published Tuesday, journalist Brian Deer reveals that Andrew Wakefield held a patent for “a ‘safer’ single measles shot.”
Meanwhile, Deer reports that Wakefield was in talks with investors to develop a business that “was to be launched off the back of the vaccine scare, diagnosing a purported — and still unsubstantiated — ‘new syndrome.’” A business plan for the venture indicates that by year three, diagnostic kits alone were anticipated to garner $43 million per year.
Dr. Wakefield has accused Mr. Deer of being a hit man. But the medical journal compared the claims with evidence compiled in the voluminous transcript of official hearings and declared that flaws in the paper were not honest mistakes but rather an “elaborate fraud.”
Some parents still consider Dr. Wakefield a hero, and others have moved on to other theories, equally unsupported by scientific evidence, as to how vaccines might cause autism.
They need to recognize that failure to vaccinate their children leaves them truly vulnerable to diseases that can cause enormous harm.
This new report is an issue because the vast majority of people do not fall into one of the two camps, those who are against the vaccines and those who are for them. There's a kind of great middle that is somewhat undecided. That's one of the reasons why I find this new accusation of “fraud” troubling: it reintroduces this as a controversy. The irony is that the more it's talked about, the more people are going think that it's still an issue. (More on DadWagon.com: Growing Up in San Francisco's "Autism Cluster")
...
It's true that this is different from almost any other medical issue. Chiropractors are controversial as well. But I go to one and that's my choice. No one else is harmed. With the vaccine debate, we're seeing that more and more as more children are getting sick and they're dying. I think we're not far from the point at which we start having real discussions about consequences for people who don't vaccinate and end up bringing in disease. I don't have a background in the law, of course, but I do think the conversation is going to pivot in that direction. (More on DadWagon.com:Pseudoscience, anxiety, and other joys of taking your kid for his shots
For some reason, parents aren't being told that this "new" information about Dr. Wakefield isn't a medical report, but merely the allegations of a single British journalist named Brian Deer. Why does one journalist's accusations against Dr. Wakefield now mean the vaccine-autism debate is over?
At the California Progress Report, Marty Omoto writes of California Governor Jerry Brown's proposed budget cuts:
The Governor’s proposal for a $750 million reduction in state general fund spending for developmental services includes the 21 non-profit regional centers.
The bulk of that cut will most likely come from the 21 non-profit regional centers who coordinate community-based services and supports to over 240,000 children and adults with developmental disabilities. The regional centers contracted under the Department of Developmental Services (DDS) also coordinate the state’s early intervention program – called Early Start – that serves over 25,000 infants.
The proposed $750 million reduction does not include any lost federal matching funds which would like push the total reduction in spending in developmental services to close to $1 billion (all funds). This reduction is on top of 2009’s permanent and on-going $500 million reduction (including federal funds lost) in developmental services (the bulk of it impacting regional center funded services).
The $750 million reduction in State general fund spending proposed by the Governor would include the continuation for at least another year of the existing 4.25% reduction in payments to most regional center providers and to regional center operations which was scheduled to end as of June 30, 2011. That reduction would, under the Governor’s proposal, continue at least through June 30, 2012 – though the savings or reduction amount actually is permanent.
The reduction also would be achieved through several unspecified measures, including imposing new accountability and transparency measures; and implementation of a statewide purchase of services standards – first attempted in 2002 by Governor Gray Davis.
WLS-TV in Chicago reports: "A teacher at a school for children with autism died a hero in Bourbonnais, Illinois on Monday [Jan 4], pushing one of his students out of the way of an oncoming bus."
An infamous 1998 study that ignited a worldwide scare over vaccines and autism — and led millions of parents to delay or decline potentially lifesaving shots for their children — was "an elaborate fraud," according to a scathing three-part investigation in the British medical journal BMJ.
The study has long since been debunked and dismissed by the scientific community, which points to 14 independent studies that have failed to find any link between vaccines and autism.
Last year, The Lancet issued a formal retraction. British medical authorities last year also found the study's lead author, Andrew Wakefield, guilty of serious professional misconduct, stripping him of his ability to practice medicine in England.
Now, the BMJ reports that Wakefield, who was paid more than $675,000 by a lawyer hoping to sue vaccine makers, was not just unethical — he falsified data in the study, which suggested that children developed autism after getting a shot against measles, mumps and rubella.
...
Few studies have had such far-reaching and harmful effects, especially after being so thoroughly discredited, says William Schaffner, an infectious-disease expert at the Vanderbilt University School of Medicine.
Vaccination rates in England plummeted after Wakefield's news conference to promote his study. Measles outbreaks in the United Kingdom and Ireland hospitalized hundreds of people and killed four children, says Paul Offit, a pediatrician at Children's Hospital of Philadelphia.
Nearly 40% of American parents also have declined or delayed a vaccine, according to the Centers for Disease Control and Prevention. Many parents now have a vague distrust of vaccines — with little to no memory of diseases that terrified their grandparents, Schaffner says.
In a series of articles starting this week, and seven years after first looking into the MMR scare, journalist Brian Deer now shows the extent of Wakefield’s fraud and how it was perpetrated (doi:10.1136/bmj.c5347). Drawing on interviews, documents, and data made public at the GMC hearings, Deer shows how Wakefield altered numerous facts about the patients’ medical histories in order to support his claim to have identified a new syndrome; how his institution, the Royal Free Hospital and Medical School in London, supported him as he sought to exploit the ensuing MMR scare for financial gain; and how key players failed to investigate thoroughly in the public interest when Deer first raised his concerns.11
Deer published his first investigation into Wakefield’s paper in 2004.12 This uncovered the possibility of research fraud, unethical treatment of children, and Wakefield’s conflict of interest through his involvement with a lawsuit against manufacturers of the MMR vaccine. Building on these findings, the GMC launched its own proceedings that focused on whether the research was ethical. But while the disciplinary panel was examining the children’s medical records in public, Deer compared them with what was published in the Lancet. His focus was now on whether the research was true.
The Office of Research Integrity in the United States defines fraud as fabrication, falsification, or plagiarism.13 Deer unearthed clear evidence of falsification. He found that not one of the 12 cases reported in the 1998 Lancet paper was free of misrepresentation or undisclosed alteration, and that in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal.
Who perpetrated this fraud? There is no doubt that it was Wakefield. Is it possible that he was wrong, but not dishonest: that he was so incompetent that he was unable to fairly describe the project, or to report even one of the 12 children’s cases accurately? No. A great deal of thought and effort must have gone into drafting the paper to achieve the results he wanted: the discrepancies all led in one direction; misreporting was gross. Moreover, although the scale of the GMC’s 217 day hearing precluded additional charges focused directly on the fraud, the panel found him guilty of dishonesty concerning the study’s admissions criteria, its funding by the Legal Aid Board, and his statements about it afterwards.14
The states that will begin requiring certain state-regulated health insurance plans to cover the screening, diagnosis and treatment of autism spectrum disorder effective January 1, 2011 include:
Iowa
Kansas
Maine
Massachusetts
Missouri
Nevada
New Hampshire
Some state autism insurance reform laws actually became effective earlier in 2010, but because the majority of health plans operate on a calendar year basis, the true impact of these laws will occur when the new plan years turn over on January 1, 2011. These states include:
Kentucky
New Jersey
In addition, Vermont’s autism insurance reform legislation will become effective July 1, 2011.
OzarksFirst.com describes a positive reaction from parents, but with caveats:
A number of Missouri children are now eligible for insurance coverage of their autism therapies.
That's because a new Missouri law requires insurers to cover $40,000 a year of applied behavioral analysis for children through age 18.
This new mandate only covers those receiving health insurance from small to medium-sized employers.
Parents say this is a step in the right direction, but there are still many more steps to take to help all children with the disorder in Missouri.
Kaia Fields is a stay-at-home mom. As if raising two boys wasn't hard enough, she has an added challenge.
Her youngest, 3-year-old Quentin, suffers from Autism Spectrum Disorder. He has never spoken a word...
"Of course it is all dependent on codes -- what codes you get from the provider -- and then you have to get everything pre-authorized before you do anything to make sure they are going to cover it," says Fields.
Then there are parents like Dawn Rethman. Her 14-year-old son suffers from autism. But since her husband works for a large Springfield employer that's exempt, her son won't get coverage.
"I think because my child is a teenager now, some of the pressure of the early intervention has been taken off of me," she says. "But if I was a parent of a child 2 or 3 and wasn't receiving early intervention, I would be very angry and very frustrated."
Over the years, there's been plenty of debate about who should speak for autism.
Of course, there's the massive non-profit called Autism Speaks, which for years has placed itself in the position of autism's spokes-organization. Through a variety of ads, events, press conferences and star-studded fundraisers, Autism Speaks has worked hard to be "heard" by the entire world. Unfortunately, not everyone agrees with the tone, style or content of the Autism Speaks message - which over time has included tear-inducing videos and high profile squabbles within its founding family.
She notes that Autism Speaks has put a person with Asperger's on its board. But advocacy by people with Asperger's or HFA, she says, creates controversy of its own. In some cases, the reason is political.
In other cases, the reason is personal: parents with children who are severely impacted by autism feel that the entire autism spectrum - not just the high-functioning end - should speak for autism. If their children, many of whom are non-verbal, can't speak for themselves, then parents should speak for them. There's a serious concern that those with the most serious issues and greatest needs won't be heard if "autism" is represented by highly articulate individuals who have done as well for themselves as almost anyone without the disorder.
At the Sacramento Bee, Jack Chang reports on the Inland Regional Center, which spent $2.9 million in 2007 to build four houses for clients. The houses are now worth a fraction of what the state paid.
Sixteen of the state's 21 regional centers now work with such nonprofit housing affiliates. Since July 2007, they've developed 37 properties. An additional 60 homes in the Bay Area house residents displaced by the closing of the Agnews Developmental Center. Yet critics, including service providers and legislators, contend that problems have been popping up because the centers and their nonprofit housing affiliates aren't subject to public disclosure requirements that would cast light on how they use state money.
Lots of public money is on the line. Regional centers received $3.4 billion in public funding in the last budget year to serve about 240,000 people.
"This whole new direction that regional centers are taking is very troubling to me," said state Sen. Bill Emmerson, R-Hemet, who is planning hearings into the system. "The amount of money that's being spent (on housing) is problematic, and we need to get to the bottom of it."
On top of that, Emmerson plans to investigate compensation in the regional center system, spurred in part by a Bee report in November that showed that the head of one Ontario-based service provider, Benson House, received $520,000 in state-funded salary in 2008 to oversee care for several dozen people.
"(The housing) is within the system, and it builds equity, and when the houses are bought and paid for, it stays within the system so the regional center can place its clients into the homes," Lungren said.
