CARA Moves

A press release from Senator Robert Menendez (D-NJ):

U.S. Senator Robert Menendez (D-NJ) today announced that his bill to combat Autism took a key step forward, being unanimously approved by the Senate Health, Education, Labor and Pensions (HELP) Committee. The Combating Autism Reauthorization Act (S. 1094) is a critical piece of bipartisan legislation will extend the programs authorized under the original Combating Autism Act (CAA) to continue for an additional three years.

The CAA provides for autism surveillance programs at the Centers for Disease Control and Prevention, as well as intervention and training programs at the Health Resources and Services Administration. Additionally, this legislation allows for the continuation of the Interagency Autism Coordinating Committee (IACC), which is responsible for advising the Secretary of Health and Human Services (HHS) on autism polices, coordinating the federal response to autism and developing the annual strategic plan for autism research. These programs have been critical in advancing research on the causes, diagnosis and treatments of autism. The CAA sunsets on September 30. Next the bill will move to the full Senate for consideration and then be sent to the U.S. House of Representatives.

In testimony on July 11, however, NIMH director Thomas Insel explained:

The CAA dealt with five general provisions: centers of excellence, surveillance, education for early detection and intervention, the IACC, and authorization of funding. The 11 Autism Centers of Excellence, surveillance efforts at the Centers for Disease Control and Prevention (CDC), programs for early detection and intervention, and funding for all of these programs is authorized to continue with or without reauthorization of the CAA. The one provision that requires reauthorization to continue is the IACC, which is scheduled to sunset on September 30, 2011. [emphasis added]

California Mandate Action

The Sacramento Bee reports that California Senate President Pro Tem Darrell Steinberg is using the final days of the legislative session to push an insurance mandate.

"When this is done it's going to be a huge victory for families and for children," Steinberg said. "It's certainly a very high priority for me."

Insurance companies are lobbying to kill the measure, saying behavioral therapy is an educational strategy not a health need. They also say the cost of covering the therapy will drive up rates for their customers by at least $200 million.

Many children who receive the therapy now get it through schools, research projects, or publicly funded regional centers that care for people with disabilities. Shifting the cost burden to private insurance companies is unfair, said Charles Bacchi, executive vice president of the California Association of Health Plans.

"We understand the state is in tough fiscal times but so are our customers who are buying our services," said Bacchi, whose group represents most of the state's HMOs.

Senate Bill 946 would exempt publicly funded health plans – including MediCal, Healthy Families and plans that cover state employees – from covering behavioral therapy. That means the bill has no cost to the state's general fund, making Steinberg hopeful it will sail through the Legislature and earn the governor's signature.

The bill is his third attempt this year to require insurance companies to cover behavioral therapy for children with autism. Earlier versions of the bill stalled in committee.

"Clearly, this has been an issue where the Legislature has agreed that caution is warranted," Bacchi said. "And unfortunately this bill appears to be poised to pass in the final hours of session with very little public discourse."

On Tuesday – four days before the legislative session ends – Steinberg engaged in the hasty end-of-session law-making process known as "gut-and-amend" when he deleted most of what had been in SB 946 and inserted the language from his autism bill. It cleared the Assembly Health Committee on Wednesday night.

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California has no process for licensing therapists who use the technique, creating more tension between private insurers and state leaders who would like them to pay for the service. Private insurers say the fact that there is no state licensing exam is proof that behavioral therapy is about learning and life skills – not medicine.

Another point of contention concerns the federal health care overhaul. The federal government is preparing a list of health services that insurers must cover beginning in 2014. Private insurance plans say they want to wait and see if behavioral therapy will be on that list. Steinberg says California has the chance to influence federal policy by requiring insurers to cover the therapy now.

"If California defines the essential benefits, that's going to guide the federal government's determination," he said.

The mandate would take effect on July 1, 2012, and last for two years, though Steinberg said he would work to extend the benefits beyond that.

Counting Cases of Autism

The South Korean study showed a greater prevalence of autism than many other studies. At the American Journal of Psychiatry, Tony Charman writes:

One reason why counting autism is so difficult is that when you set a high threshold for who has autism, the count is lower, and when you set a low threshold, the count is higher. There is also some evidence that culture drift in our understanding of what constitutes autism has changed over the decades in ways that are hard to quantify and study.

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The authors describe how they examined whether measured child and school factors, such as grade, sex, and school size, affected participation at each stage, and broadly they did not. However, there are a host of possible unmeasured factors that might have influenced participation in such a way as to introduce bias—in the direction of overestimating prevalence. These include school and parent knowledge and interest in participating in an autism study and parental concerns about their child's development and behavior.

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A final intriguing and perhaps more hopeful point is made in Kim and colleagues' discussion of how it is that so many pupils with an (undiagnosed) ASD can apparently manage to be educated and integrated in mainstream classrooms. This is a useful reminder that developmental conditions such as autism are affected by the environment in which a child develops and that accommodations to such environments can sometimes have a positive impact on children with a "disorder."

California Case on ABA

Kathy Robertson writes at The Sacramento Business Journal:

A tentative ruling that denies an attempt by the HMO industry to get a quick resolution over whether health plans must cover a controversial and expensive treatment for autism patients will stand for now.

On Wednesday, a judge found that theCalifornia Association of Health Plans didn’t satisfy its burden of proving the law is clear on the issue, and that the lawsuit should continue.

The CAHP did not request a hearing Thursday, so Sacramento Superior Court Judge Shelleyanne Chang’s ruling will stand. No new court dates have been set.

The trade group had asked for a summary judgment or quick adjudication of the issues. The association filed a lawsuit against the state Department of Managed Health Care in October, alleging the agency has no authority to mandate a new benefit, only legislators do.

On Thursday, a DMHC spokeswoman said the ruling was in the best interests of the public.

Lynne Randolph of the DMHC said in a statement that the ruling affirms the department’s ability to provide access to “medically necessary services, consistent with the law and health plan contracts.”

At issue is a promising but expensive therapy called applied behavioral analysis. Known as ABA, the therapy teaches young children with autism and similar disorders how to eat, play and learn.

Advocates of ABA would disagree with the idea that it is controversial, though it does have its critics.

Bullying and FAPE

The Register-Guard (Eugene, Oregon) reports on a bullying case that does not directly involve autism but does address an issue facing the entire disability community:

The mother of a middle school student has filed a federal lawsuit against the Harrisburg [Oregon] School District, alleging that its educators failed to accommodate her son’s Tourette’s syndrome or to protect him from bullying and assaults by other students.

The complaint, prepared by Tigard attorney Kevin Brague, seeks unspecified economic and noneconomic damages for alleged violations of the boy’s civil rights over a period of three years.

It accuses the district of negligence and intentional infliction of emotional distress by allowing other students to taunt, push and strike him because of their perceptions that he was gay.

The suit also accuses the district of disclosing the boy’s confidential personal information and education records to the general public without his consent.

And it says the district failed to follow — or even tell some teachers about — a special education plan to accommodate his disability.

Back on May 10, Doug Goldberg wrote at the Special Education Advisor blog:

In a landmark United States District Court decision, Judge Jack Weinstein has ruled that bullying can cause a child with a disability to be denied a Free Appropriate Public Education (FAPE). The case, T.K. versus New York City Department of Education, established a legal test that can be applied to future cases in the Eastern District of New York. The lengthy 51 page decision not only established a baseline test on whether bullying can deprive a child of FAPE but it also analyzed the current standards discussed in the 2^nd, 3^rd, 7^th and 9^th Court of Appeals. The methodology used by these four Courts is not uniformed leading the way for a potential Supreme Court case regarding IDEA and bullying in the future.

Driver Kicks Special Needs Kid Off the Bus

KDFW in Dallas reports:

Mom: Special Needs Boy Kicked Off Bus: MyFoxDFW.com

Health Care and Teens with ASD

A release from Washington University in St. Louis:

Children and young adults with autism spectrum disorders (ASD) use mental health services to address behavioral problems and to treat related mental health disorders such as anxiety and depression.

“Over 46 percent of adolescents with an ASD used a mental health service in the past year,” says Sarah Narendorf, social work doctoral candidate at the Brown School at Washington University in St. Louis, in a new study published in the current issue of Psychiatric Services.

“Of those who used mental health services, 49 percent received the service at their schools,” she says.

Narendorf also found that African-American adolescents and youths from lower income families were more likely to receive school-based services.

“Teens with autism often have a need for support with many issues including medical, educational and mental health problems,” says Paul Shattuck, PhD, assistant professor at the Brown School and study co-author.

“They are often involved with multiple systems of service provision including schools, doctors, hospitals, specialty clinics, and others. This complexity of needs, coupled with the complexity of getting services, puts a tremendous strain on families”

Narendorf says the findings highlight the importance of providing solid transition planning for mental health services as youth with ASDs leave high school.

“Those that have accessed services at school are especially at risk for service discontinuities as they lose access to services through the school,” she says.

“This is especially important for African American and low-income students who are more likely to get their services in the school setting.”

For their study, “Mental Health Service Use Among Adolescents With an Autism Spectrum Disorder,” Narendorf, Shattuck and study coauthor Paul Sterzing, a social work doctoral candidate at the Brown School, used the U.S. Department of Education’s National Longitudinal Transition Study 2.

The 10-year study included a nationally representative sample of more than 920 youth with autism who were enrolled in special education, ages 13-17, at the start of the study in 2000.

Charter School Removes Student

The Orlando Sun-Sentinel reports on an incident in a Florida charter school:

Kerlin Fedee thought she had found the perfect fit for her daughter — a school dedicated to the needs of young children with behavioral problems.

"They said they would be able to help her and would love to have her," Fedee said.

But Fedee was disillusioned quickly. Aspire Charter Academy in Orlando, which opened this fall, kicked out 6-year-old Natalie Querette on the first day.

Natalie, a first grader, sometimes bites, kicks and spits, especially in a new situation. She has autism and attention deficit hyperactivity disorder.

Her mother said the principal told her at the end of the first day that the school couldn't help Natalie because she screamed, bit and hit the teacher.

Aspire is run by Pam Schenkel, who spent 18 years as a behavioral support administrator in Orange County schools.

A week before the school year began, Schenkel said Aspire would fill an unmet need within the county.

The school, for kindergarten through grade 2, would serve many children who had spent months out of school for behavioral reasons, Schenkel said.

"If the school isn't going to educate them, they feel isolated," she said of the families.

District policy calls for schools, including charters, to call together a team of adults to discuss a disabled student's placement when problems arise. This is part of the federally required Individualized Education Program for students with disabilities.

But Schenkel said the charter has its own rules. "We're just following our handbook," she said.

Quadrupling in Sacramento Schools

The Sacramento Bee reports on a story that is familiar to school districts across the country:

A decade ago, fewer than 500 students in Sacramento County schools were placed in special education due to autism. By 2011, that number had risen to 2,275 -- about one of every 105 pupils, according to state data released this week.

Children with autism-spectrum disorders often have trouble socializing and communicating. They frequently engage in repetitive behavior. Nationwide increases in autism diagnoses have been attributed to increased awareness and changing definitions of the disorder. Whether autism is actually more prevalent -- as opposed to just more frequently diagnosed -- is a matter of controversy.

Autism is most common in white males. Among large districts in Sacramento County, the highest rates of special education children with autism are in Elk Grove Unified -- one autistic child per 85 students -- and in Folsom-Cordova Unified -- one autistic child per 74 students.

There are a couple of obvious caveats. Special education placements do not correspond exactly to prevalence. And generalizations about race and ethnicity are debatable, in part because differences in diagnostic patterns.

An Important New Book

From Lynne Rienner Publishers:

The Politics of Neurodiversity: Why Public Policy Matters

by Dana Lee Baker

How can society best respond to people with atypical neurological development? Should we concentrate on providing medical care, or on ensuring civil rights? Addressing these questions, Dana Lee Baker offers a provocative analysis of the ways that intersecting agendas—prevention, civil rights, providing specialized care, and celebrating disability culture—compete to make disability rights policy. The result is a thoughtful and timely consideration of the tensions shaping all quarters of disability advocacy.

Contents:

Why Public Policy Matters for Neurodiversity (And Vice-Versa).

Competing Disability Policy Agendas: Cause, Care, Cure, and Celebration.

Securing Civil Rights vs. Providing Care.

Securing Civil Rights vs. Finding a Cure.

Securing Civil Rights vs. Celebrating Diversity.

Providing Care vs. Finding a Cure.

Providing Care vs. Celebrating Diversity.

Finding a Cure vs. Celebrating Diversity.

Finding Common Ground.

See also the listing on Amazon.

Maintenance of Effort

Education Week reports:

School districts that want to reduce special education spending from one year to the next without restoring what was cut now have the blessing of the U.S. Department of Education.

In the past, federal law was interpreted to mean that once a district set its special education budget, it could not be reduced permanently except for very specific reasons. One of those exceptions to the so-called maintenance-of-effort rule were limited to decreased expenses, such as when an experienced, highly paid special education teacher retired or a high-needs student left a district. Cutting the special education budget for other reasons meant a district was running the risk of losing its share of federal funds.

But a letter to the National Association of State Directors of Special Education in June from the Education Department, now says otherwise.

A school district “is not obligated to expend at least the amount expended in the last fiscal year for which it met the maintenance-of-effort requirement. In other words, each year’s [district] maintenance-of-effort obligation is based on the actual amount expendedin the immediate prior fiscal year,” wrote Melody Musgrove, the director of the office of special education programs.

A Case in Pennsylvania

Pamela Halpern writes at Education Law:

ARE SCHOOL DISTRICTS OR INSURANCE CARRIERS RESPONSIBLE TO PAY FOR AUTISTIC STUDENTS TO RECEIVE SERVICES AND TREATMENT IN A SCHOOL SETTING?

Both- according to a recent Philadelphia Court of Common Pleas decision.

Judge Fox ,in the case of Anthony Burke v. Independence Blue Cross, ruled that the PA Autism Insurance Act ("Act 62"), which went into effect on January 1, 2010, requires that if an insurance carrier chooses to cover a type of treatment or service for any other condition, then it must also cover that treatment or service for autism service disorders regardless of setting. Meaning, even if a health insurance policy otherwise excludes services in schools, Act 62 overrides such an exclusion because Act 62 provides that insurers must pay for rehabilitative care, including applied behavioral analysis ("ABA"). While Judge Fox noted the overlap between IDEA and Act 62, he ultimately decided that the legislature, by creating overlapping statutes, purposely chose to pass some of the cost of ABA services to insurance carriers. Of course the decision in Burke has no relevance when Act 62 does not apply, such as in the case of self funded healthcare programs.

Not surprisingly, Independence Blue Cross filed their appeal on August 16, 2011.

See an earlier WTXF report on the case:

Autistic Boy's Family Takes On Insurer: MyFoxPHILLY.com

Older Fathers and Autism

Tia Ghose writes at The Scientist:

While women have long been told that fertility drops off as they age, men may have a biological clock as well. The offspring of older male mice have several copy number mutations in gene regions associated with developmental disorders, according to a new study publishing today (August 30) in Translational Psychiatry. The findings could explain why the children of older men have higher rates of schizophrenia and autism than those with younger fathers.

“This study is so important,” said Dolores Malaspina, a translational neuroscientist at the New York University Langone Medical Center, who was not involved in the study. Researchers have been reluctant to believe that mutations in sperm from older men could lead to developmental disorders, she said, and studies like this could go a long way towards convincing skeptics.

In 2006, Malaspina and her colleagues studying an Israeli cohort found children of men over the age of 40 were almost 6 times more likely to have autism than those with fathers younger than 30. Other studies have shown that people suffering from schizophrenia and autism had a more copy number mutations, where a stretch of DNA is missing or replicated, than those without the disorders. But it wasn’t clear whether advancing paternal age led to these mutations, or if the mutations were the cause of the disorders, said John McGrath, a psychiatrist and epidemiologist at the Queensland Brain Institute, at the University of Queensland in Australia.