Eric Cantor and the Kids First

From House Majority Leader Eric Cantor (R-VA):

As we mark World Autism [Awareness] Day and the beginning of Autism Awareness Month, thousands of Americans will be thinking about what they can do to promote awareness and research into autism spectrum disorder. I believe it is important for the Federal government to do the same. Earlier this year, I announced that in the House of Representatives we would work to prioritize federal spending of scientific research into debilitating diseases and disorders.

Today, I am pleased to announce that in the coming weeks my colleagues Representatives Gregg Harper and Tom Cole will introduce in Congress the “Kids First Research Act,” that will put additional taxpayer funding into scientific research of pediatric diseases and disorders. It’s not enough to just conduct research for new treatments—we need to be pushing for research that will help uncover the cure for autism spectrum disorder and many other diseases impacting children.

The Kids First Research Act will eliminate taxpayer financing of presidential campaigns and the Republican and Democratic party conventions and instead use these funds to expand pediatric research at the National Institutes of Health through the NIH Common Fund (the Common Fund supports transformative research that involves the coordination of multiple NIH research institutes and centers).

Just two weeks ago, researchers reported that 1 in 50 school aged children are affected by autism spectrum disorder. That’s too many. And that’s why I can think of no better use for the millions of taxpayer dollars currently spent on presidential campaigns and political party conventions than funding the medical research that holds the key to improving the quality of life for so many Americans.

Paul Bedard writes at The Washington Examiner:

 Cole, a recent chairman of the National Republican Congressional Committee, said picking on funds for presidential campaigns and national presidential conventions was easy. "Transforming welfare for politicians into efforts to eradicate this terrible disease is a much better reflection of our national prerogatives," said Cole. "This legislation is an example of how much can be accomplished by ending wasteful spending and redirecting those funds toward urgent national priorities like the need to combat autism."

The funding maneuver is politically shrewd -- but the phrase "eradicate this terrible disease" is not likely to win applause from self-advocates.

World Autism Awarenss Day

From the United Nations:

Early interventions can help people on the autism spectrum reach significant gains in their abilities, Secretary-General Ban Ki-moon today said, urging international attention to autism and other developmental disorders.

“Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential,” Mr. Ban said in his message on World Autism Awareness Day, which is marked annually on 2 April.

“International attention is essential to address stigma, lack of awareness and inadequate support structures,” he added.
...
In her video message for the Day, Ban Soon-taek, the Secretary-General's wife, noted the UN's commitment to raising awareness about autism

... 

In November, the General Assembly held a High-level Special Event on Autism and Developmental Disabilities. Member States adopted a new resolution encouraging governments to strengthen research and expand their delivery of health, education, employment and other essential services.

 

Michigan: Insurance Case, Medicaid

Crain's Detroit Business reports a setback for the insurance industry:

Blue Cross Blue Shield of Michigan was “arbitrary and capricious” in denying reimbursement to a class of insured families for an aggressive form of autism therapy, on the grounds that it was “experimental or investigative,” a federal court judge ruled over the weekend. 

U.S. District Judge Stephen Murphy in a 22-page written ruling ordered that all denied claims for coverage by insured people who obtained applied behavioral analysis therapy for children with autism spectrum disorder be sent back to the insurer, for “readministration.” 

Murphy found in the class action lawsuit that Blue Cross could not support its conclusion in a 2010 medical policy statement that the effectiveness of ABA therapy “has not been established,” citing several studies that “almost universally conclude” that it has been. 

“Remand (for readministration) is not an opportunity for (the Blues) to invent new bases for denial of claims that were not previously asserted,” Mruphy’s ruling states. “(And any) vague language denying a claim such as, ‘the service isn’t payable under your contract,’ shall (also) be construed as a denial based solely on the experimental/investigative exclusion, and the claim will therefore merit reimbursement.”

The Detroit News reports:

Michigan's Medicaid and MIChild programs will cover the cost of applied behavior analysis services to treat young children with autism starting today. 

The Michigan Department of Community Health recently received federal approval to provide applied behavior analysis services for children from 18 months through five years who have been diagnosed with autistic spectrum disorder, Asperger's disorder or pervasive developmental disorder-not otherwise specified.

Autism Acceptance Month

Disability Scoop reports:

The Autistic Self Advocacy Network is spearheading efforts to rebrand April — known for decades as “Autism Awareness Month” — as “Autism Acceptance Month.” The group has launched awebsite and is publicizing events in cities across the country that are geared toward inclusion, understanding and supporting those with autism.

“I don’t think there are many people who don’t know that autism exists. We think it’s time to move on to more constructive goals,” said Ari Ne’eman, president of the Autistic Self Advocacy Network, of the effort which is also being supported by TASH, the National Council on Independent Living and other groups.

The initiative is an extension of a grassroots movement that emerged two years ago when Paula Durbin-Westby, who has autism, established a Facebook event titled “Autism Acceptance Day.” At the time, Durbin-Westby said she was inspired after hearing from other self-advocates who were frustrated like she was that the traditional awareness month often meant pleas for donations and negative portrayals of life with autism.

Robison on Lanza

Investigators found a copy of Just Look Me in the Eye in Adam Lanza's house. WSHM in Springfield, Massachusetts, interviews the author, John Robison, who has Asperger's.

"It is important to remember that just because somebody like that might have had Asperger's, that does not mean that he does not have other problems," Robison stated. "Asperger's does not protect you from any number of other potentially serious disorders."

At its root, Robison said autism is a communication disorder. For someone like Lanza, it could make it difficult to understand what people are trying say.

"It can make you lonely," said Robison. "It can make you depressed. It can make you anxious. It can make it hard for you to learn. There is nothing in the profile of autism, in any of its forms, that predicts violence towards other people."

That is why Robison, who just last year was appointed to the Interagency Autism Coordinating Committee by the secretary of health and human services, believes gun control is a tough issue. He said for every child diagnosed with autism, there are two adults who have the disorder but do not know it.

"Some of those adults that are not diagnosed are policemen, security guards, some are all manner of other emergency responders," said Robison. "Some are soldiers in the military. Should we take guns away from them? Of course not. Most of those people are valuable members of society."

Robison said something that gets overlooked in all of the Sandy Hook reporting is that two of the 20 children who were killed were also in the autism spectrum.

CBS 3 Springfield - WSHM

Autism and Privacy in North Dakota

Good data are necessary for good policy, but data collection often involves privacy concerns. In North Dakota, The Jamestown Sun reports:

A bill under consideration in the North Dakota Legislature is prompting concern among some parents of children with autistic spectrum disorders. The bill, Senate Bill 2193, creates a database of information about autistic people and establishes the position of a state autism coordinator. 

“I have minor concerns about it all but what is extremely upsetting is the mandated database,” said Amanda Lausch, mother of 5-year-old Ariella who has an autism spectrum disorder. “Whoever diagnoses them is required to report it to the state. It requires a physical exam and the state can collect any other information it deems appropriate.”
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The current wording of the bill as passed by the Senate, includes a clause that requires the department of health to keep confidential all records of the database that could be used to identify an individual. The same clause exempts transfers of information to other state agencies from the confidentiality requirement. It does require the receiving state agencies to treat the information as confidential. 

[State Senator Joan] Heckaman said the privacy of the medical records is also covered by federal law. 

The Health Insurance Portability and Accountability Act, more commonly known as HIPAA, requires all medical information to be treated as confidential, she said.

A Vote in the New York Assembly

AP reports on a vote in the New York State Assembly:

The Assembly's march to approve the state budget was interrupted briefly on Thursday by an impassioned rank-and-file effort to reverse cuts in programs for the developmentally disabled.
"Whoever negotiated these cuts has never struggled with the pain of watching a child with disabilities," said Assemblyman Bill Nojay, a Monroe County Republican.

"I want to know why the state of New York is making is making an attack on people with disabilities," said Assemblyman Tom Abinanti, a Westchester County Democrat whose son is autistic.

Assembly members argued the programs that feed and care for the developmentally disabled youths and adults in group homes already often face short staffing that hurts care. They said money should be taken from elsewhere in the $141.2 billion budget. They cited the $420 million tax credit to subsidize movie and TV productions and $54 million that will be spent to help renovate the stadium used by the NFL's Buffalo Bills.

"Where are our values?" said Assemblyman Harvey Weisenberg, a Nassau County Democrat whose son is disabled and needs intensive care. "We cannot let dollars be more important than people!"

The effort by Republicans and some Democrats in the Assembly majority to fully restore a $90 million cut in aid failed. But it was followed by a rare standing ovation, and hugs by colleagues for Weisenberg, who was in tears.

h/t:  HP

Autism and the Vaccination Schedule

Bloomberg reports:

Autism risk isn’t increased by the use of recommended childhood vaccines, U.S. health officials found in a study addressing parent concerns that too many immunizations may cause the disorder.

An analysis of 1,000 toddlers showed no differences in exposures to vaccines between autistic and normally-developing children, according to findings published in the Journal of Pediatrics by researchers at the Centers for Disease Control and Prevention in Atlanta. The CDC recommends 10 immunizations before age 2, and some require more than one shot.

Multiple studies have shown measles, mumps and rubella vaccines don’t individually cause autism. A third of parents surveyed in a previous report were concerned too many vaccines given before age 2, or on the same visit, may be a contributor. About 1 in 10 toddler parents refuse or delay vaccinations because they believe the schedule to be unsafe, the study said.

“This is a very important and reassuring study,” said Geri Dawson, the chief scientific officer of Autism Speaks, an advocacy organization, in a telephone interview. She wasn’t involved in the study. “It’s going to be very helpful in addressing some of the concerns parents have had about vaccination schedules.”

The research compared data taken from managed-care groups for 256 children with autism and 752 without. It found no differences in the amount of antigens the kids were exposed to in the first 2 years of life. It also found no support for the idea that too many vaccines on one doctor’s visit might increase the risk of autism.

Massachusetts Autism Commission

In Springfield, WWLP reports on the Massachusetts Autism Commission:

Report: 75,000 people in MA have autism

Major recommendations include:

1. Expand eligibility criteria for the Department of Developmental Services so that individuals with autism who have IQs over 70 and have substantial functional limitations have access to services.
2. Assure that those with autism and a co-occurring mental health condition have equal access to and appropriate services from the Department of Mental Health.
3. Expand intensive services in the home and community for individuals with autism through the
Children’s Autism Medicaid Waiver, the Adult Medicaid Waivers, and the Department of Elementary and Secondary Education/Department of Developmental Services Residential Placement Prevention Program.
4. Expand insurance coverage for autism treatments
5. Increase and fortify supports and resources that make it possible to maintain the family unit and assist individuals with autism to live in the community.
6. Determine the number of people with autism in Massachusetts and their support needs by
implementing a plan for consistent statewide data collection.
7. Improve access to autism screening, diagnosis, and Autism Specialty Services through Early Intervention for children diagnosed with autism and those considered at high risk for autism.
8. Increase employment opportunities for individuals with autism by providing a range of job training, job development, and employment opportunities.
9. Increase capacity to provide educational supports and services necessary to meet the needs of all students with autism.
10. Increase availability of augmentative and alternative communication methods, devices and
services for individuals with autism.
11. Increase the range of housing options for individuals with autism.
12. Improve the delivery of healthcare services for individuals with autism. 13. Assure that the Autism Commission’s Recommendations are implemented and outcomes are

monitored for effectiveness.

Nevada Mandate Expansion Bill

LifeHealthPro reports on legislation in Nevada:

Assemblyman James Ohrenschall, D-Las Vegas, and two colleagues have introduced Assembly Bill 369, a bill that could require state-regulated health plans to cover an unlimited amount of medically necessary applied behavioral analysis (ABA) therapy.

Today, Nevada requires carriers to cover ABA therapy -- an intensive form of therapy that can cost as much as $100,000 per year in some areas -- but lets the carriers limit benefits to $36,000 per year.

Under A.B. 369, the minimum benefit cap for ABA therapy for autism would be enough coverage to pay for "30 hours of treatment per week unless a treatment provides for additional hours of treatment."

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The board of the Silver State Health Insurance Exchange -- Nevada's Patient Protection and Affordable Care Act (PPACA) health insurance exchange -- has included an analysis of the bill in a health insurance legislative update packet.

Maintenance of Effort in the Continuing Resolution

Education Week reports:

Under maintenance of effort—or MOE, in wonky Washingtonspeak—states can't cut their own education spending below whatever amount they spent the previous year and still tap federal dollars for special education under the Individuals with Disabilities Education Act, unless they get special permission from the department.

Keeping up special education spending is usually not a problem for states, but it became an issue during the recent budget recession.

The most prominent example by far? South Carolina, which has actually sued the Education Department in connection with this issue. The department withheld $36 million in special education funding from the Palmetto State last October. And that reduction was slated to stay in place permanently, until Congress and the administration intervened.

The Obama administration and lawmakers on Capitol Hill, including U.S. Sen. Tom Harkin, D-Iowa, the chairman of the panel that oversees education spending, added a provision to the recent spending legislation clarifying that while states that are out of compliance with the law will still see their funding reduced, that cut won't be in place in permanently. Instead, the reduction would just be for the year (or years) that the state was out of compliance and didn't get a waiver. Once the problem had been fixed, the state could go back to its regular spending levels.

The new provision goes on to explain that the reduced funding would still go to IDEA, just not to the offending state. Any money that's taken away from a state that doesn't keep up its end of the spending bargain would be split among states that do, as a kind of bonus. But states that get the extra funds would have to understand that this would be a one-time thing—they wouldn't be able to count on the extra funding forever.

Autism: Causes, Correlates, and Confusion

Last year, Brandy Crainer wrote at The Examiner:

In recent news several possible factors have been pointed to as causes of autism: maternal obesity, smoking during pregnancy, lead, PCBs, paternal age, and maternal age. Despite the rush to find a definite cause for autism spectrum disorders, the answers seem numerous and it becomes difficult to evaluate what studies are worth paying attention to and which are just bad science. Parents looking at the headlines may feel fingers are being pointed at them while expectant mothers may worry everything they do will cause autism in the future.

The list also includes auto exhaust, pesticides, plastics, and gut bugs.  (Also see a list by Emily Willingham.)

Now add a couple of other risk factors:  maternal experience with childhood abuse and the age at which grandfathers had their children.

The problem here is not necessarily the quality of the research, but the risk of media overload. Under the barrage of potential causes of autism, people may end up believing everything or believing nothing.

If people obsess about remote, hypothetical risks, they may overlook real and avoidable risks.  Alternatively, after a point, they may just tune out the entire subject.

Pentagon Autism Research

Previous posts have noted an oddity:  a good deal of autism research money comes from the Pentagon budget.  Autism Speaks provides an update:

A government funding bill approved by Congress includes $6 million for the Department of Defense Autism Research Program.

The new funding is part of the Congressionally Directed Medical Research Programs which has awarded 85 grants valued at $41.4 million for autism research since the program was created in 2007 through efforts spearheaded by Autism Speaks. The new funding was included in a

Continuing Resolution approved by Congress to fund government operations through the end of the current federal budget in September. The bill awaits President Obama's signature.

Congress approved the additional funding as the Centers for Disease Control and Prevention (CDC) issued the results of a national survey which indicated the actual rate of prevalence in the United States could be in 1 in 50 children. The new data do not replace the CDC's official 1 in 88 prevalence rate, but indicates prevalence is on the rise.

The Department of Defense funding is in addition to the research funding authorized under the 2011 Combating Autism Reauthorization Act for the National Institutes of Health. Any impact of sequestration on the appropriation is not yet clear.