Nixon and Autism

Today would have been Richard Nixon's 100th birthday.  What did he have to do with autism?  Some have speculated that his verbal precocity, social awkwardness, and physical clumsiness may have been signs of Asperger's -- but that proposition is unprovable.  But what is clear is that he signed several measures that shaped policy for people with autism and other disabilities:

• Objecting to parts of the bill, Nixon reluctantly signed the Elementary and Secondary Education Act Amendments of 1970 (P.L. 91-230), which created a separate Act, the Education of the Handicapped Act (EHA). Part B authorized  grants to states to assist them with programs for the education of children with disabilities.  
• Nixon signed the Developmental Disabilities Services and Facilities Construction Amendments of 1970 (P.L. 91-517), which  contained the first legal definition of "developmental disabilities," includedbroad responsibilities for a state planning and advisory council to plan and implement a comprehensive program of services for persons with developmental disabilities.  The law also authorized grants to support interdisciplinary training in institutions of higher education of personnel providing services to persons with developmental disabilities.
• After vetoing earlier versions, Nixon signed the Rehabilitation Act of 1973 (P.L. 93-112). Sections 501, 503 and 504 prohibited discrimination in federal programs and services and all other programs or services receiving federal funds. Section 504: “No otherwise qualified handicapped individual in the United States, shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”

Autism and the Affordable Care Act

Autism Speaks finds that fewer than half the states have planned to include ABA coverage in their new health care exchanges.

"While the picture remains somewhat murky, the unequivocal support needed by families dealing with autism clearly is missing," said Stuart Spielman, Autism Speaks' senior policy advisor and counsel. "We have an autism epidemic. Merely having some form of health insurance available will not address this epidemic."

The analysis was conducted on the "essential health benefits" benchmark plans each state was to submit to the U.S. Department of Health and Human Services (HHS). Autism Speaks reviewed information on the website of the Center for Consumer Information and Insurance Oversight, the part of HHS that wrote the essential health benefit rules, and found that 17 states were including coverage for behavioral health treatments and that coverage was implied by another five states.

In addition, Ohio Governor John Kasich in late December announced that his state would include ABA and other autism therapies as part of its essential health benefits package.

"Failing to categorize behavioral health treatment for autism as a mandatory element of the EHB package is not only bad health policy, but bad statutory construction as well," Autism Speaks told HHS in formal comments. Congress clearly stated when it enacted the ACA in 2010 that coverage for behavioral health treatment had to be one of the 10 essential health benefits each state was required to include as part of their new health care exchanges for the small group and individual markets

The 17 states determined to include behavioral health treatment include:

• Arizona
• Arkansas
• California
• Indiana
• Kentucky
• Louisiana
• Maine
• Massachusetts
• Missouri
• Montana
• Nevada
• New Hampshire
• New York
• Texas
• Vermont
• West Virginia
• Wisconsin

The five states where the coverage may be included, but is unclear, are:

• Colorado
• Connecticut
• Illinois
• New Jersey
• New Mexico

Ava's Law in Georgia

A video in favor of a Ava's Law, a proposed insurance mandate in Georgia:

 

Special Education in California

In California, the Legislative Analyst's Office has issued a report titled Overview of Special Education in California. Over the past decade, the prevalence of specific learning disabilities has dropped 20 percent while the prevalence of autism has increased 241 percent.

As shown in Figure 8, federal IDEA funds typically cover less than 20 percent of overall special education expenditures. This is notably lower than the amount the federal government originally committed to provide in support of special education services. The IDEA expresses intent to appropriate funding for each SWD up to 40 percent of the national average expenditure level per K-12 pupil, which would equate to roughly 40 percent of California’s overall special education expenditures. The federal budget, however, has never come close to providing states with this amount. We estimate that California would receive roughly $2 billion more annually if the federal government were to “fully fund” the intended level articulated in the IDEA.

Florida Appeals Court Order

The Miami Herald reports:

Already facing sharp criticism over policies that have resulted in the rationing of care to severely disabled children, Florida healthcare regulators are challenging a federal judge’s order that the state provide a costly — but potentially life-changing — treatment to children with autism.

Last spring, U.S. District Judge Joan Lenard struck down the state’s refusal to pay for applied behavior analysis (ABA) for autistic children, calling the state’s policy “arbitrary, capricious and unreasonable.”

The court case involved three autistic youngsters — then-5-year-old K.G., 2-year-old I.G. and 4-year-old C.C. — whose efforts to obtain behavioral therapy had been denied by the state’s Medicaid insurance program for needy and disabled people. Lenard ordered that the three children be given the care they sought — and that the state provide such care to other autistic children, as well.

The state Agency for Health Care Administration has appealed the order, and, in a pleading submitted in November, argued that the ruling strips the state of its ability to weigh requests for the therapy on a case-by-case basis to ensure the treatments are “medically necessary.”

“There is no evidentiary support for the district court’s conclusion that [behavior analysis] services are medically necessary for all autistic Medicaid recipients under 21,” the brief said. “In fact, the evidence established that ABA treatment is not medically necessary, or even effective, in all cases. Some children do not respond to ABA treatment at all, and, in all other cases, the efficacy of ABA treatment diminishes rapidly after early age.”

Miss Montana and a Vote

KRTV in Great Falls, Montana, reports:

On Saturday, Cut Bank resident Alexis Wineman will take the stage in the Miss America Pageant, but for now she is hoping to garner enough votes online to become a finalist in the contest.

In the Miss America online video contest, Wineman explained why she feels she should be the next Miss America.

Wineman's platform issue, titled "Normal is Just a Dryer Setting: Living with Autism," focuses on her life since she was diagnosed with a form of it in 7th grade. She said she hopes to bring national awareness to it.

"Most people do not understand what autism is, and one in 88 people having some form of autism, this understanding is becoming more and more necessary," Wineman said in the video.
Wineman is also keeping friends, family and fans up to date on her Facebook page, where she said she has enjoyed walking the runway at the Fashion Show Mall in Las Vegas and making appearances at various events.

She has also been chosen as one of 14 contestants to be featured on the show "20/20."
Click here to see her video and cast your vote.

Problems with Public School

At The Atlantic, Amy Mackin writes of her son's problems with the public school system:

Unfortunately, again, no one was paying attention during the most difficult parts of Henry's day—the unsupervised social settings. Henry suffered a serious breakdown that year. He hadn't told anyone, but, as it turned out, he had been bullied on the school bus for months.
...
The autism spectrum is wide and varied, and every autistic person is unique. People like Henry need someone looking out for them, particularly in overwhelming environments like school. The problem is that public schools are mostly worried about academics and test scores. They have to be—their success in those areas dictates the percentage of state and federal funding they get. Few schools have designated psychologists (most often, multiple schools share the same one). Teachers aren't psychologists, and asking them to be is not fair.

This puts kids with Asperger's in a particularly precarious spot. Many of these children are above average academically, even gifted in certain subjects. Special-education departments tend to focus on helping students with learning disabilities. But kids with Asperger's often don't need academic support. They need help navigating social interactions. When typical middle school boys are showing interest in girls and competitive sports, their Asperger's counterparts are often still playing with toys and building with Legos. The Tooth Fairy and Santa Claus are still very real for many of these kids, even as they approach the teen years.

France, Autism, and Psychoanalysis

Previous posts have discussed the dismal state of autism treatment in France.  A film titled "The Wall,"by Sophie Robert, explained the ongoing grip of discredited psychoanalytic theories in that country.  Kristina Chew writes:

Robert’s film has been part of an ongoing effort to change the understanding and treatment of autism in France. After the organization Autism Europe lodged a complaint against France in 2002 for failing to educate autistic children, the European Committee of Social Rights said that “France has failed to achieve sufficient progress” in educating autistic children and had made autistics an “excluded group.”

Seeking to help their children, more parents in France have been taking action, lobbying politicians like Daniel Fasquelle, a member of France’s parliament who says in the BBC that it is an “an out-and-out disgrace” that France’s medical community should continue to swear by psychoanalysis as the treatment for autism. David Heurtevent’s Support the Wall project continues the fight for the rights of autistics in France to education and services.

It is perhaps not surprising that the use of psychoanalysis to treat autism should be making its last stand in France, where Freudianism has long been applied not only to the treatment of mental illness but also to the study of literature, philosophy and radical politics. In a new year, it is more than time for the French medical community to acknowledge that it is decades behind the rest of the world in understanding what autism is and in treating and educating autistic individuals in ways that will actually help them achieve all they can.

Obama Signs Bill with TRICARE Provision

Previous posts have discussed a measure enabling retired TRICARE enrolees to get coverage of ABA.  Autism Speaks reports:

President Obama has signed bipartisan legislation creating a one-year pilot program expanding ABA care to all military families through TRICARE, the Pentagon's healthcare program, a critical first step in improving services for military families raising children with autism.

"Autism Speaks thanks President Obama for taking this sensible step for military families, along with our Congressional champions Rep. John Larson of Connecticut and Sen. Kirsten Gillibrand of New York," said Peter Bell, Autism Speaks executive vice president for programs and services. "At the same time, we restate our intention to make these medical services permanent. Military families who sacrifice so much deserve access to the benefits they have earned."

The TRICARE provision was included as an amendment to the National Defense Authorization Act voted out of Congress in December. Both the House and Senate had approved a permanent expansion of ABA benefits providing for prescribed levels of care, but the measure was whittled down to a one-year pilot program when the bill was finalized in conference committee.

The Department of Defense (DoD) currently restricts ABA coverage to active duty members through the supplementary ECHO program which limits annual benefits to $36,000, covering just 6 to 11 hours of therapy a week, well below the recommended level of care. Because of specific policy shortfalls, ABA care terminates upon retirement, including services for children of wounded warriors retired due to injuries sustained in combat.

Service members have said they have re-enlisted for additional tours of duty simply to maintain coverage for their children with autism.

The one-year pilot program, which is for all TRICARE eligible beneficiaries with autism, is to start within 90 days. Within 270 days, DoD will then be required to report to Congress on costs, a comparison of the pilot program with ECHO and any recommended legislative remedies. The legislation offers no guidance on coverage limits or parameters of the program.

"Autism Speaks will closely monitor the DoD’s implementation of the pilot program on a variety of fronts, including its coverage of ABA Technicians and BCaBA’s," said Karen Driscoll, Autism Speaks’ associate director for federal government affairs and military relations, and a Marine Corps spouse.

"Development of effective policy is essential," she said. "It is critical that TRICARE work with stakeholders, including military families and subject matter experts, to ensure the final policies regarding coverage and delivery of ABA care are consistent with best practices."

OPM, ABA, and Maryland

Previous posts have discussed the decision by the federal Office of Personnel Management to allow (but not require) coverage of ABA under the Federal Employee Health Benefits Program.

The Baltimore Sun reports:

Autistic children of federal workers in 22 states begin receiving insurance coverage this month for a key behavioral treatment, under a decision by the Office of Personnel Management.

Maryland, home to the third-largest population of federal workers in the nation, is not one of them.

"These families desperately need the best coverage for their kids," said Stuart Spielman, senior policy adviser and counsel for Autism Speaks. He said the advocacy group would petition the OPM to expand its coverage as quickly as possible.

...
But Jacque Simon, policy director at the American Federation of Government Employees, said the mix of therapies and medication is not a substitute for applied behavior analysis. Simon said the union has fought for decades for coverage. 

"It's long been recognized as the most effective treatment," she said. "It's been absolutely horrible on the part of OPM to delay coverage for this long. It's really a half-measure, but it's better than nothing."

Ohio Lawsuit Update

A previous post discussed a lawsuit in Ohio.  The Cincinnati Enquirer reports:

A federal judge ordered state officials on Wednesday to provide speech therapy and other care to an autistic boy in Clermont County who has gone without those services for more than four months.

The judge stopped short, however, of a more sweeping order that the boy’s parents say is needed to get crucial, comprehensive care to their son and other autistic children across Ohio.

The order by U.S. District Court Judge Michael Barrett comes about two weeks after Holly and Robert Young sued the Ohio Department of Health, claiming the state has denied their 2-year-old son, Roman, the therapy he needs to one day become self-sufficient.

...
Barrett ordered the state to resume the basic services immediately. He also said he would consider the Youngs’ demand for the more intensive therapy, which would involve about 40 hours a week of one-on-one work with a therapist at a cost of about $2,750 a week.

...
 The state’s lawyers said the therapy still is not widely accepted for use in young children. They also said the responsibility for providing care would shift from the state to local schools after Roman’s third birthday, which is Jan. 20.

Parents, Facebook, and Community

The Connecticut tragedy has prompted members of the community to join together and push back on the speculation that autism had anything to do with it.

At The Connor Chronicles, Flannery Sullivan writes:

After the horrific events that took place at Sandy Hook Elementary, news reports and articles were seen everywhere, and a great many, in their haste to report something, indicated that the shooter was autistic, specifically, a person with Asperger’s. That reporting set off a nightmarish chain of events in which ill-informed people, believing that autism could be attributed to planned violence, made hateful comments and put up Facebook pages calling for extermination of autistics.
...


Others started sharing pictures of their loved ones, with meaningful descriptions. Someone had an idea to put all the pictures in one place. Tim Tucker, from Both Hands and a Flashlight, had a FB page that was empty, waiting to be used. He offered up the page, as well as worked to create a website, and Autism Shines was born.

We couldn’t believe how quickly it grew. Although it was created just a couple of days before Christmas, the FB page acquired 2,000 fans in less than 48 hours, and amassed a few hundred photos. The website is now operational, and is gaining in popularity as well.

At Parents, a post by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

Last Saturday when I woke up and checked my Facebook, I noticed my feed was full of friends (mostly autism parents) sharing all these beautiful photos of kids, teenagers, adults. All the photos had some kind of personal message about the person in the photo. All the photos were shared from a page called Autism Shines - a page created by autism parents.

In reading the messages, I was so moved. Not only by the messages on the photos but by the amount of shares, likes and comments of support. One mother showed the page to her son and he said, “I used to think I was the only autistic kid on earth. Then I realized there were others like me. I think there are some kids who don’t know they aren’t alone, but now they will know.”

In their effort to “show the world all the positive attributes of autism,” The Autism Shines Facebook Page welcomes anyone to “upload your photo of someone you love with autism, or yourself, and caption it with something great about them.”

When I uploaded my photo of Norrin, the page had about 200 ‘likes.’ By the end of the same day – it had a little more than 1500 and the number keeps growing (it’s close to 3000 now). This is the power of community. This is autism awareness at its best.

Insurance Day in Alaska

Previous posts discussed the mandate bill in Alaska. The Associated Press reports that its insurance provisions take effect today.

One of the new laws set to take effect in Alaska will require health insurance policies to cover treatment of autism spectrum disorders... A part of the autism bill took effect earlier, establishing a task force to study issues such as the state providing insurance coverage for the disorder.
...
Some insurance companies opposed the measure, saying it was unfair to put the burden on private companies.

However, Amy Carter, a spokeswoman for Premera Blue Cross Blue Shield, recently said the insurer expects rates to rise at a lower level than initially predicted.

Sen. Johnny Ellis, D-Anchorage, a primary sponsor of the Senate bill, said in an email that "the state has consistently adopted state-mandated coverage as part of its standard health plan for state employees," even though there was no requirement to do so.

"This has held true for coverage of breast cancer, prostate cancer screenings, well-baby exams and numerous other medical conditions," he said. "Insurance coverage for autism should be no different, and I would expect and hope this happens after the next round of labor contract negotiations."