Mumps in Arkansas

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.

Jamal Goss reports at KTHV-TV in Little Rock:

The number of suspected mumps cases in Arkansas is growing. As of September 2, there were four confirmed and at least 48 suspected cases. Even though those cases are in northwest Arkansas schools, the concern is still spreading throughout Little Rock.

That outbreak has students without the disease staying at home. Arkansas's Department of Health warns parents to take advantage of a vaccine that can protect their child. That still makes some parents nervous.
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Kristen Walbrup, a mother of three, is unsure if she will allow her youngest daughter to receive the vaccination after her oldest girl was rushed to the pediatrician after having received the measles, mumps and rubella (MMR) vaccine.

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Walbrup said, "I have met parents even sitting in the pediatrician's office who have children who have autism and they believe that it's a result of the MMR vaccine."

The Centers for Disease Control and Prevention (CDC) in 2013 did a study showing that vaccines do not cause autism spectrum disorder. The study examined the number of antigens (substances in vaccines which cause the body's immune system to fight diseases) from vaccines during the first two years of life. The results of the studies showed that children with autism and those without received the same amount antigens. There have been nine studies since 2003 that have shown no links between the MMR vaccine and autism in children.

Update on Reactions to Clinton's Autism Plan

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign. Previous posts noted some reactions to the plan, and here is an update.

At Spectrum, Jessica Wright has reactions:

• Julia Bascom: As an autistic self-advocate, there’s a lot to like about Clinton’s autism plan. The focus on substantive policy issues is great to see. You can tell the campaign did a deep dive here. The plan focuses primarily on the concrete needs of autistic people and our families, which is a refreshing change of pace from much of the national conversation about autism, which is still focused on ideas about cure and tragedy. Clinton isn’t scared of autism: She recognizes autistic people and our families as constituents with very real needs and priorities, and she’s got a plan to start meeting those needs...

Amy S. F. Lutz at The Jewish Week:

Some parents of severely autistic kids have opposed the plan because it fails to include any mention of autism prevention. And its language certainly reflects the position of autistic self-advocates that autism isn’t a disease that needs to be cured but a different skillset that just needs more societal support. Still, there are components that will doubtlessly help those with more profound impairments, including increased insurance coverage of therapies, support for caregivers and accessibility of communication devices. And Clinton’s call for the “first-ever adult autism prevalence and needs study” reveals an interest in data that I can’t help but hope will drive policy in the future.

Alyson Klein at Education Week:

On Clinton's wish list: enacting the "Keeping All Students Safe Act," which was championed in previous Congresses by Rep. George Miller, D-Calif., and Sen. Tom Harkin, D-Iowa, both now retired. The bill would limit seclusion and restraint as means of controlling students in special education, particularly if there is a risk of injury, and would prevent these practices from being included in students' Individualized Education Programs, or IEPs.

So far, the bill hasn't gotten much traction in the GOP-controlled Congress, but similar measures have gained in popularity in state legislatures.

That doesn't mean everyone is a fan of such policies. Back in 2012, AASA, the School Superintendents' Association, came out against the measure. AASA is still concerned about any legislation that would prohibit local districts from considering the use of seclusion and restraint, after other interventions (like Positive Behavioral Intervention and Supports) have failed.

And Rep. John Kline, R-Minn., the chairman of the House education committee, expressed concerns back in 2012 that the bill could hinder state efforts to deal with the issue. (Kline will soon be out of office, but other lawmakers may take a similar view.) What's more, the newly enacted Every Student Succeeds Act includes language cracking down on discipline practices that remove kids from the classroom, including seclusion and restraint.

Jennifer Martinez Belt at The Arkansas Democrat-Gazette:

So I was delighted by Hillary's plan--but I can't say I was surprised. As a native Arkansan, I saw her advocating for the children of this state from the moment she arrived in Little Rock.

As first lady, Hillary fought for more awareness and funding for autism research. In the Senate, she introduced the bipartisan Expanding the Promise for Individuals with Autism Act. Throughout her career, she's proven to be a champion for families by digging into the finer points of issues like autism to identify and prevent the specific fears that really keep parents up at night.

For the families of the 3.5 million Americans with autism spectrum disorder, these issues are deeply personal to us. Hillary has always understood that.

And my hope is that if more people show her kind of leadership, kids like Thomas will finally be able to grow up to become anything they can imagine.

Restraint and Seclusion in Arkansas

In The Politics of Autism, I write:

No federal laws specifically restrict restraint and seclusion in public and private schools and there are widely divergent laws at the state level [i] Thirty-two states require parental notification when disabled students are subject to these measures, but 18 states and the District of Columbia have no such protection.[ii] And even where notification laws are in place, compliance may be spotty.[iii] A U.S. Senate report offers some disturbing examples of alleged abuse:

• In December 2011, a Kentucky school district restrained a nine year-old child with autism in a duffel bag as punishment. The child’s mother witnessed him struggling inside the bag while a teacher's aide stood by and did nothing.
• In North Carolina, the mother of a five-year-old girl with autism and other developmental disabilities agreed to the use of restraints only in the event that her daughter became aggressive. [S]he discovered that her daughter had been left alone and strapped to chair, even though she had shown no signs of aggressive behavior. Although the mother believed her daughter was restrained over ninety percent of the time she was at school, the school denied restraining the child on a regular basis. The school eventually released records showing that the IEPs of multiple special education students did not accurately discuss the types of interventions being used or were otherwise incomplete.
• A behavior analyst in Connecticut recommended brief time-outs for an eight-year-old girl with autism and other disabilities. However, when the girl’s mother realized that the time-outs had escalated to repeated seclusion in a small cinderblock room, she requested that the school discontinue their use. The behavior analyst opted to continue the seclusion and the school supported this decision. The mother said that she felt “powerless” to stop them.

[i] U.S. Government Accountability Office, “Seclusion and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers,” GAO-09-719T, May 19, 2009.  Online: http://www.gao.gov/new.items/d09719t.pdf.[ii] Jessica Butler, “How Safe Is the Schoolhouse? An Analysis of State Seclusion and Restraint Laws and Policies,” Autism National Committee, January 20, 2014. Online: http://www.autcom.org/pdf/HowSafeSchoolhouse.pdf.[iii] U.S. Senate, Health , Education, Labor, and Pensions Committee, “Dangerous Use of Seclusion and Restraints in Schools Remains Widespread and Difficult to Remedy: A Review of Ten Cases:  Majority Committee Staff Report,” February 12, 2014. Online: http://www.help.senate.gov/imo/media/doc/Seclusion%20and%20Restraints%20Final%20Report.pdf.

Brian Fanney writes at Arkansas Online:

Autistic children are injured in Arkansas public schools because there are no mandatory guidelines on the use of restraints on students, advocates said recently.

Two lawyers -- one from a disability advocacy group and the other with a practice focused on special-needs children -- said Arkansas schools ignore voluntary state guidelines and don't always tell parents when children are restrained.

That can lead to dangerous situations for autistic children, in particular, because their behavior can be more difficult to manage, the lawyers told the Task Force on Autism at its Nov. 20 meeting at the state Capitol.

In one study, the U.S. Department of Education's office of civil rights said students with disabilities represent 12 percent of students in its sample, but nearly 70 percent of the students who are physically restrained by adults in their schools.

"We're seeing injuries of spiral fracture, kids getting injured, kids getting manhandled," said Debra Poulin, legal director at Disability Rights Arkansas. "We see all sorts of crazy things that you just wouldn't really believe."

Theresa Caldwell, a lawyer who specializes in special education law, said parents may not be aware that their children are being restrained. There's no law or regulation that requires schools to inform them, she said.

"There's absolutely no oversight so that means we don't know the number of autistic kids that have been physically restrained," she said. "We don't know how much it's happening. The schools themselves do not have to keep track of it."

Vaccinations in Arkansas

AP reports:

Before 2003, only a few hundred Arkansas schoolchildren did not receive standard childhood vaccinations due to health conditions or religious beliefs.

But once legislators changed the law and allowed parents to cite a "philosophical" objection, the rate of students forgoing shots has been rising, and health officials say the result is that people are unnecessarily contracting — and sometimes dying — from diseases ranging from whooping cough to the flu.

Dr. Dirk Haselow, chief of immunizations at the Arkansas Health Department, said the number of medical and religious exemptions has fallen slightly since 2003, but there was a marked increase in the philosophical exemption.
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At present, there is a large outbreak of whooping cough in the Pacific Northwest. Whooping cough is particularly dangerous for infants, whose airways can be closed by swelling associated with the infection. During an outbreak in California last year, 10 infants died.

And there are occasional cases of measles, a disease that had been almost wiped out in the U.S. Haselow said measles' recurrence parallels the rise in people going unvaccinated, and the main reason is "bad information" that links immunizations with autism.

"There was ... some bad research that was in the press years ago that has been retracted. Many parents have held onto the misconception that (the measles, mumps and rubella vaccine) causes autism. This is a very hard opinion to change," he said.

Arkansas Mandate Goes Into Effect

The Arkansas law on insurance coverage took effect Saturday, as the Jonesboro Sun reported in a story carried by AP:

A new state law that mandates insurance coverage for certain autism treatments goes into effect today, and local advocates are hopeful about the possibilities that means for countless children dealing with an autism spectrum disorder.

"What it will mean is that the therapy that has over 50 years of research behind it will now have a paying source for families in Arkansas," said Dayna Miller-Black, founder of Jonesboro-based SPARC of Arkansas, a clinic that offers a variety of therapies, including speech and language, occupational therapy, physical therapy and applied behavior analysis (ABA) therapy.

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The turning point in Arkansas came last March when Gov. Mike Beebe signed the 2011 Autism Insurance Reform Law. The legislation had been championed by Rep. Uvalde Lindsey, D-Fayetteville, and Sen. Mary Anne Salmon, D-North Little Rock.

The law requires health insurance companies to provide coverage of the screening, diagnosis and treatment of autism spectrum disorders. It has no cap on number of visits.

Insurers will be required to cover ABA treatment, pharmacy care, psychiatric and psychological care, therapeutic care and other treatments determined by a physician.

The law has a $50,000-per-year cap on benefits for ABA coverage, but it allows for children up to 18 to receive those benefits.

Miller-Black said some insurance policies have covered 20 speech therapy sessions a year, which does not adequately serve a child for an entire year. Parents must pay out of pocket or have an additional coverage source to pay for additional sessions, which can range from $85 to $100 an hour.

"It'll help us to be able to serve more kids," Miller-Black said.

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She pointed out that ABA services must be provided by someone who is a Board Certified Behavior Analyst, and there are only about a dozen such people in the state. Most of those work for the Arkansas Board of Education.

That leaves very few professionals to handle the possible influx of clients looking for services once they realize the new law will pay for ABA.

More information about the new law and its impact is available through the Partners for Inclusive Communities at the University of Arkansas for Medical Sciences. Contact Dianna Varady, parent coordinator for the Arkansas Autism Resource & Outreach Center, at 501-682-9900 or 501-526-6084.

Update on Arkansas Mandate

Brandi Hodges of KAIT (Jonesboro, Arkansas) reports:

Tuesday morning in Little Rock, Governor Mike Beebe signed a bill into law that will change the lives of families living with autism. The legislation requires private insurers to provide coverage for autistic children.

"Families shouldn't have to wait. They should be able to get the treatment that is most research proven," said Dayna Miller.

Miller's son, Briar, was diagnosed with autism when he was three. Knowing he needed Applied Behavioral Analysis, or ABA, she and her family sacrificed to make it possible. She went back to school and opened up the "SPARC" clinic in Jonesboro, helping other children.

"You have a lot of moms and dads that want to provide the best treatment but just cannot financially do it," said Miller.

The law signed Tuesday morning by Governor Beebe will open the window that has been closed for so many families. Miller said Act 196 will require group insurance companies to cover autism treatment. Briar and his family have made a lot of trips to Little Rock to talk to legislators about the need for this law.

An earlier report from KFSM, Fort Smith, Arkansas:


Autism Now Covered In Arkansaas by LocalNews-GrabNetworks

Arkansas Governor Signs Mandate

On Friday, Autism Votes reported:

NEW YORK, NY (March 4, 2011) – Autism Speaks joined Arkansas families today in applauding Governor Mike Beebe for signing into law House Bill 1315, now Act 196. This new law requires insurance companies to provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA).

Sponsored in the Arkansas House by State Representative Uvalde Lindsey (District 88) and escorted through the Senate by Senator Mary Anne Salmon, Act 196 includes coverage of behavioral health treatments, such as ABA therapy. The law includes a maximum benefit for ABA therapy of up to $50,000 annually until the individual reaches age 18.

“We thank Governor Beebe for signing HB 1315 into law,” said Peter Bell, Autism Speaks executive vice president of programs and services. “This enactment allows Arkansas to join the growing number of states that have recognized the unfair and unreasonable burden being imposed on individuals diagnosed with autism and their families.”

Arkansas Senate Acts

AP reports:

The Senate has approved legislation that would require most health insurance companies to cover autism diagnoses and treatments for people 18 and younger.

The Senate approved the proposal on a 34-0 vote on Wednesday. The proposal now heads back to the House to consider an amendment.

The legislation focuses on covering applied behavioral analysis, which involves evaluating and modifying a child's behavior by using positive reinforcement and repetition while monitoring what triggers certain behavior and what reinforces it. It also entails teaching children social, verbal, reasoning and motor skills they may have difficulty learning on their own.

Arkansas Mandate Moves Again

An earlier post dealt with the Arkansas mandate bill. One version won committee approval last week, and an amended version won approval this week. Associated Press reports:

Arkansas lawmakers advanced a bill Tuesday that would alleviate financial hardships for families struggling to pay for expensive treatments for autistic children.

Dayna Miller, a speech pathologist who once contemplated selling her own kidney so she could afford therapy for her autistic son, praised the bill as long-overdue.

"I mainly feel relieved," Miller said. "It's one more hurdle that we've made it over."

The House Public Health, Welfare and Labor Committee approved the legislation by a voice vote after the bill's sponsor, Rep. Uvalde Lindsey, amended the bill to require most health insurance companies to cover autism diagnoses and treatments for people 18 and younger. It now heads to the House for a vote.

One in 93 boys and one in 345 girls in Arkansas are autistic, according to ArkansasAutism.org, a web site run by autism activists.

Eye Contact Arkansas adds detail:

HB1315 went back to the House Public Health Committee today for amendments and passed easily. The new amendment added a comma and the limited coverage to age 18. (correction: only ABA has the age limit, not other services.) The cost to the state employee and teachers insurance pools are now estimated at $3.4 million a year, down from $5 million, for the new mandate.

Rep. Uvalde Lindsey and Dianna Varady spoke in favor of the bill with no one speaking against it. However, this time the Committee members Rep. Andy Mayberry and Rep. Bryan King asked extensive and direct questions about the bill.

Rep. Mayberry asked about public schools providing ABA treatment as part of federal IDEA requirements. However, Rep. Lindsey pointed out schools have an unfunded mandate for autism treatment and might come to the state legislature for additional funding.

Rep. Mayberry then asked about who can prescribe ABA treatment, to which Rep. Lindsey replied that insurance companies were allowed to have customary utilization and review "to stop charlatans prescribing or having a blank check."

More on HB 1315 here.

Arkansas Mandate Moves

AP reports:

Speech therapist and behavior consultant Dayna Miller cried Tuesday as she told a silent group of Arkansas legislators about selling nearly everything she owned to get treatment for her autistic, 10-year-son.

Miller, who was a factory worker at the time, said her family sold possessions, took out loans and used her mother's savings. When they had used up everything they had, they learned to administer the behavioral treatment for her son Briar on their own.

Now, Briar speaks and reads clearly, plays golf and participates in a program for gifted children. Miller, 39, of Jonesboro, concluded her testimony in support of a bill that would require most health insurance plans to cover diagnosis and treatment for autism by bringing him in front of the committee.

"I am where I am because of good therapy," Briar said as many wiped away tears. "Every kid should have the same chance that I had."

After hearing from Miller and other parents of autistic children, the Public Health, Welfare and Labor Committee voted 13-4 to move the bill to the full House. Twenty-three other states have adopted some type of autism insurance measure since 2001, according to Lorri Unumb, a senior policy adviser for Autism Speaks, a national autism advocacy organization

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Law Enforcement and Autism, Continued

Claudia Kalb writes in Newsweek:

Law enforcement and autism are a volatile mix, and not an uncommon one. “It happens quite regularly, unfortunately,” says Lee Grossman, president of the Autism Society, a grassroots organization based in Bethesda, Md. Decades ago, people with autism and other developmental disorders tended to land in institutions, where they had little interaction with anybody other than family members and staff. Today, autistic children and adults live with their families, go to local schools and, in some cases, get jobs in their communities. The unfortunate downside to this independence, says Grossman, is that “many more individuals on the spectrum are having run-ins with the police department and others, and it’s generally not a very positive experience.”

Autism is a diverse condition, but it is characterized by behaviors—repetitive movements, poor eye contact, sensitivity to lights and noise—that can be misinterpreted as unusual and even disrespectful. Even innocent behaviors can be come off as malicious. Grossman tells the story of an autistic man who loved to ride the bus. One day, he started staring at a female passenger. “She told him to stop, he wouldn’t, and it got uglier and uglier,” says Grossman. Ultimately, the police were called. The man’s crime turned out to be an autistic trait: fixation on a single object. In this case, the man was fascinated by the woman’s dangling earring.

(I would nitpick one line in the story: "One of autism’s defining features is the inability to process even the most mundane social interactions." That is an overstatement. It is more accurate to say that autistic people have an impaired or limited ability to process social interactions, and the extent of this impairment can vary a good deal.)

Police training is one remedy for the problem. Here is an example from New Hampshire:

The Wilton Police Department launched a program during the first week in June called Autism Awareness 9-1-1, in which families of autistic children can let local emergency personnel know about the child’s condition.

The program, coordinated in the Nashua area by Gateways Community Services, is designed to help avoid any potential undue conflict from social misunderstandings between the child and the officer, particularly in instances with lost children where misunderstandings could create conflict.

Wilton Police Chief Brent Hautanen thinks the program will be useful.

“From a law enforcement perspective, the more information we have, the better our response is going to be,” Hautanen said. “If we have a child that’s missing that’s autistic, the faster we can get that information, the better we’ll be able to handle that call.”

Another example from Arkansas:

Police in the area say they regularly interact with people with disabilities, including autism.

But many officers said not having a proper understanding of the disability sometimes makes it difficult for them to do their jobs.

That's why law enforcement officials from all over the state met Monday in Springdale for a special seminar on what autism is and how to work with individuals with autism.

When police officers arrive at a scene, they need to be able to assess the situation, and that includes anyone who might be there when they arrive. A big part of that is recognizing those who might be autistic.

Lt. Will Dawson from the Greenwood Police Department said, “I didn't know that it affects one out of every 110 people."

From the Huffington Post, here is an update on the Neli Latson story:

The disturbing case of Reginald Cornelius Latson, the autistic young man arrested in Virginia last month, has taken an even more disturbing turn. His mother, Lisa Alexander, told an internet-based radio audience Sunday night that Stafford County deputies used racist slurs against her son when they stopped and arrested him May 24.