Waiting in Nevada

KRNV in Reno reports:



AP reports:

Testifying before the Nevada Legislature on funding for autism services was a herculean effort Wednesday for Reno mother Sherrie Olson.

Her 2-year-old son A.J., wearing a Superman T-shirt, screamed and writhed in her arms. He tried to run out of the hearing room and ride the elevators up and down. He didn't speak or listen to the people around him.

It's just an ordinary day for a parent of a child with autism.

"It's the best feeling ever when you get hugs from him rather than just screaming," Olson said.

Nevada legislators Wednesday heard three bills that would rework the state's autism services and replenish funding at the same time federal money and state general funds are drying up.

Assemblywoman Melissa Woodbury, R-Las Vegas, co-sponsored AB315, which would create a single umbrella for the state's three existing autism assistance programs. AB316 would establish a standardized screening system that would allow the state to determine how many Nevadans have autism.

James Ohrenschall, D-Las Vegas, is co-sponsoring AB345, which would make a $1.5 million appropriation to fund autism programs. A budget committee would have to approve the extra money even if the bill passes the Assembly Health and Human Services Committee because the funding is not included in Gov. Brian Sandoval's proposed budget.

The three existing state funding streams support about 398 children, and at least 349 children are on the waiting list. If AB345 passes, all the children on the waiting list will receive services.

McDonnell Seeks to Amend Autism Mandate in VA

At The Washington Examiner, David Sherfinski writes:

Virginia Gov. Bob McDonnell has proposed several changes to one of the most high profile bills to pass the General Assembly this year – a measure that would extend insurance coverage to autistic children ages 2 to 6.

One amendment would require the Board of Medicine to license behavior analysts, who oversee autism treatment, and another allows for an independent assessment of treatment plans to ensure that the treatment is “justified and effective.”

Another would strike down the entire law if a Virginia court or federal law invalidates the $35,000 annual cap on benefits in the legislation. The measure would include public employees but not small businesses.

The amendments mark a compromise between the governor’s administration and relevant stakeholders, including those pushing for the coverage and business interests that opposed the measure.

“We have communicated with the patrons to ensure this legislation is in the proper form to guarantee the balance between meeting the needs of children with Autism Spectrum Disorders , their parents who purchase insurance coverage, businesses who provide insurance to their employees, and the industry that provides the coverage,” said McDonnell.

The General Assembly will reconvene April 6 to act on the proposed amendments.

AP reports:

McDonnell's proposed alterations to the autism bill encountered resistance Tuesday from Republicans and Democrats in both the House and Senate.

Under heavy pressure from business and corporate interests such as the Virginia Chamber of Commerce and the insurance industry lobby that oppose the bill, McDonnell proposed subjecting some autism treatment providers to Board of Medicine licensure, said legislators knowledgeable about discussions with the administration. He also proposed delaying the measure's effective date by six months, to July 2012.

The lawmakers said McDonnell wants to tighten eligibility for some small employer groups and make the treatment less available by requiring that it be provided directly by a certified provider, not someone supervised by a certified provider as bill prescribes.

The legislators spoke privately with The Associated Press on Tuesday, fearing public comments would derail talks with McDonnell.

"This is a very popular bill that helps a lot of children and families and it would be tragic if the governor were to veto or amend it," said Sen. Janet Howell, D-Fairfax County and a sponsor of the legislation.

Her bill and its House counterpart sponsored by Del. Thomas A. Greson, R-Loudoun, passed the House and Senate with more than the two-thirds majorities necessary to override a veto. The bill's most powerful supporter was Republican House Speaker Bill Howell.

Only a simple majority is necessary to reject an amendment during the April 6 one-day reconvened legislative session. But McDonnell has authority under Virginia's Constitution to unilaterally veto a bill next week's session his alterations are denied by majorities of two-thirds or greater.

McDonnell's chief spokesman, J. Tucker Martin, acknowledged Tuesday evening that the governor will propose amendments, "but I cannot offer any information regarding what those amendments will contain."

The Godboldo Case

WXYZ in Detroit reports:

A mother who is accused of firing at police as they tried to take her 13-year-old daughter into custody faced a judge on Sunday.

57-year-old Maryanne Godboldo appeared in 36th District Court via video link. Godboldo’s attorney asked the judge to let her go on personal bond, but the judge refused, saying the charges were too serious.

He set bond at $500,000.

Godboldo is accused of firing shots at police through the wall of her home. It happened after child protective services first went to her house on Blaine Thursday evening to take custody of her 13-year-old daughter.

Authorities say Godboldo was to lose custody because she was not properly treating her daughter’s mental illness. When she refused to answer the door for protective services, police were called, shots were fired and the stand-off ensued.

In court Godboldo’s attorney said the mother was not administering the drug because she believes in holistic approach to her daughter’s condition.

The attorney described the illness to the judge as “possible autism.” She said the daughter had been prescribed medication called Risperdal. The drug is used to treat a number of conditions, including schizophrenia, mania and depression.

The 13-year-old is being treated at a local mental facility. Relatives are hoping to ultimately get custody of her.

A Vaccine Forum, and Somalis in Minneapolis

At The Minneapolis Star-Tribune, Maura Lerner reports:

A panel of health experts and opinion leaders spent nearly two hours at a Somali community forum Saturday night, trying to convince skeptics that the measles vaccine is safe and necessary.

But by the time it was over, there was little sign that anyone's minds had been changed. And a vaccine clinic, set up outside the meeting room at the Brian Coyle Center in Minneapolis, was still awaiting its first customer.

More than 50 people turned out for what was described as an educational forum prompted by the current measles outbreak in Hennepin County, which has sickened 11 people, including five Somali children, since February.

Dr. Abdirahman Mohamed, one of two Somali physicians on the panel, warned that families who don't vaccinate their children are putting their lives in danger. He said he knows of six Somali-American children who have caught measles and died during visits to Africa since 2008, including two children from Minnesota.

Also according to Lerner, Andrew Wakefield had spoken to the community a few days earlier:

Dr. Andrew Wakefield, a controversial British doctor whose research purported to link vaccines to autism, met privately with a gathering of Somali parents in Minneapolis on Wednesday night.

Wakefield, who arrived amid the city's first measles outbreak in years, declined to answer questions about the purpose of his visit. Reporters were barred from the meeting, which was described as a "support group" for parents of autistic children.

Health officials say that vaccination rates have been dropping in the Somali community because of fears about vaccine safety, fueled by Wakefield's now-discredited research

But not everyone in the community takes Wakefield's side. On Friday, Lerner wrote of autism mom Hodan Hassan:

In December, she said, she turned out to hear Andrew Wakefield, the hero of the anti-vaccine movement, at a Somali community meeting in Minneapolis. Wakefield conducted a now-discredited 1998 study suggesting a link between autism and the measles, mumps and rubella (MMR) vaccine.

Later, Hassan said, a local doctor challenged her to do her own research on Wakefield, who was accused of scientific misconduct in connection with the study, and ultimately stripped of his medical license in England.

Now she is one of his biggest critics. "I was shocked when I found out people used to die [of measles]," she said. Many still do in her native Somalia, she noted, and in other in parts of the world where vaccines are not available.

"If we could all go back in time, we would have appreciated it," she said.

Just this week, Wakefield returned to Minneapolis for a private meeting with Somali families. Members of the news media were barred from Wednesday's gathering, which reportedly drew only about a half-dozen Somali parents.

But one of the organizers, Patti Carroll of Shoreview, said she doesn't believe parents are worried about the measles outbreak.

"They'd rather have them get the measles than deal with the effects of unsafe vaccines," said Carroll, a volunteer with Generation Rescue, an autism advocacy group.

Last year, at his On Risk blog, David Ropeik wrote more generally of the perceived risk balance of autism and vaccines:

Several risk perception factors are at work here. Those who refuse to acknowledge the overwhelming evidence that there is no link between autism and vaccines don’t trust the government and pharmaceutical industry, and mistrust fuels fear. Parents with autistic kids have so little control over their children’s fate, and lack of control fuels fears. And any risk to kids evokes more fear than the same risk to adults. These risk perception factors are real, as real as the evidence disproving the autism-vaccines link. So despite a mountain of such evidence, the fears persist, and fuel a rising doubt about vaccines in general. I observed that this Perception Gap between the fear and the facts is dangerous, not only for parents who choose not to vaccinate their kids, but for everyone else, since herd immunity is important to keep largely defunct diseases like measles from spreading again.

...

There is another risk perception factor at work here too. Risk v. Benefit. Not long ago when measles and other childhood diseases were widespread, and lethal in hundreds of cases, the benefit of the vaccines outweighed their risk. Now the risk of the diseases has become so low that we only worry about the drugs. Curious. Because they’ve succeeded, we worry more about the vaccines than the diseases from which they are protecting our children.

McDonnell and the Virginia Mandate

The Richmond Times-Dispatch reports:

Advocates are anxiously awaiting action by Gov. Bob McDonnell on a measure requiring autism insurance in the final days of his window to review bills.

Supporters of the measure were on Capitol Square Friday trying to get a sense of where things stood — hearing McDonnell is considering several amendments to the bill — and hand-delivering a letter to the governor's office urging his support.

McDonnell has until Tuesday to sign, veto or amend legislation passed during the winter General Assembly session. The autism coverage legislation ranks among the more contentious bills awaiting action by McDonnell. It pits families of autistic children, who have for years sought help with expensive treatments, against powerful business interests.

"Obviously he's not going to sign it, or he would have," Teresa Champion, a regional director for the Virginia Autism Project, said while sitting outside Speaker of the House William J. Howell's office on Friday waiting for any news.

Licensure Bill in California

The California Association for Behavior Analysis (CALABA) has launched a campaign:

Until Behavior Analysts are licensed by the State of California, our profession will not be secure. Insurance companies will continue to deny coverage for our services; families of children with developmental disabilities will doubt the legitimacy of our profession; and our right to practice will be vulnerable to legal attacks.

The Solution is Simple: We Must Get Organized

We must get prepared to assert ourselves in the state capital. As long as we remain unorganized, events in Sacramento and in the courts will continue to threaten our profession.

Our first and most important priority must be to pass a law licensing Behavior Analysts in California. This will increase our professional legitimacy in the eyes of the public. It will open the possibility of getting insurance companies to cover behavior analysis. Most importantly, passing licensure requirements will be the next important step toward helping make sure that every person who needs it gets the high quality behavior analytic therapy he or she needs to succeed in life.

Our Opportunity is Now

That's why CalABA has launched the largest grassroots organizing campaign in the history of our organization. The Campaign to Protect our Practice is for every behavior analyst dedicated to improving the lives of individuals with developmental delays in California. It is also for every family and individual who needs help providing the best opportunities to their special needs loved ones. Passing this legislation will require more than just a good idea. We need to mobilize the entire autism community to pressure our legislators to make this a priority.

The association is backing AB 1205 (sponsored by Bill Berryhill, R-26). From the Legislative Counsel's digest:

This bill would prohibit a person from holding himself or herself out to be a certified applied behavior analyst or a certified assistant applied behavior analyst unless licensed by the Board of Behavioral Sciences. The bill would require the board to issue a license to a person who meets certain educational requirements and passes an examination administered by, and is certified by, the Behavior Analyst Certification Board, a nonprofit corporation, or another similar entity approved by the board. The bill would describe the services that may be provided by a certified applied behavior analyst and a certified assistant applied behavior analyst, subject to specified supervision. The bill would authorize the board to regulate these licensees and to enforce these provisions.

The association has an advocacy guide here.

Americans with Disabilities Act: New Regs Involve Autism

The EEOC is issuing new regulations to implement the Equal Employment Provisions of the 8 Americans with Disabilities Amendments Act of 2008. EEOC explains:

Our revised analysis proceeds as follows. In analyzing the available data, we are mindful of the fact that the Amendments Act was designed to make it easier to meet the definition of disability under the ADA and to expand the universe of people considered to have disabilities. Prior to the Amendments Act, the Supreme Court in Sutton v. United Air Lines, Inc., 527 U.S. 471 (1999), used the ADA’s finding that approximately 43 million Americans had disabilities as part of its reason for concluding that the benefits of mitigating measures (e.g., medication, corrective devices) an individual used had to be taken into account when determining whether a person had a substantially limiting impairment. The Amendments Act rejected this restrictive definition of disability and explicitly removed this finding from the law. It also provided that the ameliorative effects of mitigating measures (except ordinary eyeglasses or contact lenses) were not to be taken into account in determining whether a person’s impairment substantially limited a major life activity.

Thus, based on the Amendments Act’s rejection of Sutton alone -- apart from the many other changes it made to the definition of a substantial limitation in a major life activity -- we know that the number of people now covered under the ADA as having a substantially limiting impairment or a record thereof should be significantly more than 43 million. (The Court surmised that the 43 million number was derived from a National Council on Disability report, Toward Independence (Feb. 1986), available at http://www.ncd.gov/newsroom/publications/1986/toward.htm, which in turn was based on Census Bureau data and other studies that used “functional limitation” analyses of whether individuals were limited in performing selected basic activities.)

Under the ADA as amended, the definition of an impairment that substantially limits a major life activity will obviously be broader than captured by prior measures, since “substantial” no longer means “severe” or “significantly restricted,” major life activities now include “major bodily functions,” the ameliorative effects of mitigating measures (other than ordinary eyeglasses or contact lenses) are disregarded, and conditions that are episodic or in remission are substantially limiting if they would be when active. Based on the available data, it is impossible to determine with precision how many individuals have impairments that will meet the current definition of substantially limiting a major life activity or a record thereof. We do know, however, that, at a minimum, this group should easily be concluded to include individuals with the conditions listed in § 1630.2(j)(3)(iii) of the final regulations -- including autism, cancer, cerebral palsy, diabetes, epilepsy, HIV infection, multiple sclerosis, muscular dystrophy, and a variety of mental impairments.

While it is true that, prior to the Amendments Act, many of these individuals were assumed to be covered under the law by their employers, the reality was that large numbers of individuals with these conditions were considered by the courts not to have disabilities, based on an individualized assessment of how well the individuals were managing with their impairments, taking into account mitigating measures. Thus, for purposes of this regulatory assessment, we consider individuals with all of these impairments to be individuals whose coverage has now been clarified by the Amendments Act.

...

Thus, we use as a starting point the data reported by government agencies and various organizations on the number of individuals in the United States with autism, cancer, cerebral palsy, diabetes, epilepsy, HIV infection, multiple sclerosis, muscular dystrophy, and a variety of mental impairments.7 Adding these admittedly disparate and potentially overlapping numbers (and acknowledging that some of these estimates include children and are not restricted by employment status), we can assume a rough estimate of the number of individuals with these impairments who would be found substantially limited in a major life activity as a result of the Amendments Act, as follows:

--Autism – Approximately 1.5 million individuals in the United States are affected by autism.8

8 See “What is Autism?” http://www.autismspeaks.org/whatisit/index.php (last visited Mar. 1, 2011); see also Centers for Disease Control, ”Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2000 and 2002,” available at

http://www.cdc.gov/ncbddd/autism/documents/AutismCommunityReport.pdf (various studies regarding prevalence in children).

Do-Over in NY

Last year, now-departed Governor Paterson vetoed an insurance mandate bill in New York.

Now, LIHerald.com reports:

State Sen. Charles Fuschillo Jr., a Republican from Merrick, has introduced legislation to ensure that people with autism receive insurance coverage for the screening, diagnosis and treatment of autism spectrum disorders.

Currently, those with autism are routinely denied insurance benefits for the treatment of their disorder, forcing their families to pay for costly treatments.

“No family should have to choose between forgoing important health treatments or going broke to get care for their loved ones,” said Fuschillo. “However, many families with a loved one who has autism must do just that because their health insurance company refuses to cover autism treatment costs. This legislation would put an end to that by ensuring that families have the costs of screening, diagnosis and treatment of autism spectrum disorders covered by insurance.”

In addition to requiring coverage, the legislation would prohibit an insurance company from terminating or refusing to renew coverage for someone who has been diagnosed or received treatment for autism.

Assemblyman Joseph Morelle, a Democrat from Irondequoit who is chairman of the Assembly’s Insurance Committee, has introduced a companion bill in the Assembly that would also require insurance companies to pay for autism treatments.

See Fuschillo release

See Autism Speaks release

Finances of Autism Organizations

Left Brain/Right Brain looks at IRS Form 990, finding that Autism Speaks ($45.5m in revenue) and Generation Rescue ($641k in revenue) both have roughly equal ratios of salaries to program service expenses. Also it finds that the National Autism Association ($542k in revenue) does not have the thousands of dues paying members that it had claimed. "The lowest dues level for the NAA is $35/year. The amount of dues collected was $12,465. This suggests a maximum of 356 dues paying members."

Wandering

Disability Scoop reports:

Disability advocates are divided over a Centers for Disease Control and Prevention proposal to add wandering to the menu of descriptors doctors can use to diagnose individuals with autism, intellectual disability and other conditions.

Under the proposal, which is up for public comment through April 1, wandering would be added to the CDC’s diagnostic coding system as a secondary classification that could be applied to individuals with developmental disabilities.

But whether or not a person’s tendency to wander away from home or school should be considered a medical issue is proving contentious.

Advocates for the proposal say that creating a diagnostic code for wandering would increase awareness and force schools, clinicians and the community at large to address the issue.

...

Other advocates worry, however, that labeling wandering as a medical issue is misguided. Ari Ne’eman, president of the Autistic Self Advocacy Network, argues that there is no research to suggest that wandering is medical in nature rather than a behavior that should be addressed through a social support system.

“For a lot of people with significant impairments, trying to leave a situation can be one of the only ways for them to communicate that they are facing abuse or facing an overwhelming situation. If this is put into a medical context then thought may not be given to why,” says Ne’eman whose group is working with The Arc, TASH, the National Disability Rights Network and others to oppose the CDC plan.

At the ASAN site, Ne'eman adds:

Labeling hundreds of thousands of children with a "wandering" diagnosis will increase restraint and seclusion in schools: One of the consistent messages from our community in last year's advocacy for federal legislation to stop restraint and seclusion in schools was that when schools plan to restrain students, they do restrain students - frequently with tragic results. By labeling hundreds of thousands of school children with disabilities with a diagnosis of "wandering", CDC will encourage districts to plan for the use of restraint for these students in Individualized Education Plans (IEPs) and school safety planning. Furthermore, by claiming that "wandering" is an unavoidable medical diagnosis instead of a behavioral response to specific circumstances, children with little to no communication needs may lose one of their last ways of making family members and educators aware of abusive or sensorily overwhelming environments: trying to leave a dangerous situation. Far from making children with disabilities safer, this proposal will enable abuse "in the name of treatment" and make it harder for non-speaking students to communicate problems to their families.

A release from Autism Speaks:

With increasing frequency, parents of children with autism spectrum disorder (ASD) report the terrible consequences that can occur when their children wander or unexpectedly run away. One mother described the recent death of her child who had wandered away from her home, despite efforts to lock doors and windows. Recognizing the seriousness and urgency of this problem, Autism Speaks, the world's largest autism science and advocacy organization, vigorously supports the proposed ICM-9-CM diagnostic code and asks the autism community to sign the petition found at http://www.change.org/naa. In addition, Autism Speaks has joined the Interagency Autism Coordinating Committee in the call for action for Health and Human Services (HHS) Secretary Kathleen Sebelius to study the causes of wandering and elopement behavior, and to develop ways of preventing its occurrence.

See the webpage for Autism Wandering Awareness Alerts Education (AWAARE)

Kim Wombles has a highly detailed post at Science 2.0

Bullying Report and Legislation

Last month, AbilityPath.org said that special-needs kids face a "nationwide silent epidemic of bullying." The assertion came in a report titled "Walk a Mile in Their Shoes.” Some passages:

“Because of difficulties with social interaction and the inability to read social cues, children with autism and Asperger’s syndrome have higher rates of peer rejection and higher frequencies of verbal and physical attacks,” said Robin Kowalski, a psychology professor at Clemson University in Clemson, S.C.

...

In 2009, the Massachusetts Advocates for Children in a survey of nearly 400 parents of children with autism across the state found that 88 percent of children with autism have been bullied at school ranging from verbal abuse to physical contact. [The report was titled "Targeted, Taunted, Tormented: The Bullying of Children with Autism Spectrum Disorder."]

...

Dr. Sameer Hinduja, co-director of the Cyberbullying Research Center in the School of Criminology and Criminal Justice at Florida Atlantic University says that, in some cases, the use of computers and technology may be a child with special needs only social outlet.... We also need to realize that what may seem normal to us – in terms of social interaction – is not normal to children with special needs, especially children on the autism spectrum."

The Daily Caller reports:

Rep. Jackie Speier, California Democrat, will introduce a bill that would require schools to report incidents of bullying against children diagnosed with conditions like Down syndrome and Aspergers to the federal government. It would also mandate that any federal dollars that promote anti-bullying programs focus partially on that group.

“There is [currently] no requirement that as part of the anti-bullying curriculum, that there be made specific reference to children with special needs. That’s particularly dumb,” Speier said during a briefing on school bullying on Capitol Hill Wednesday. “What I want to do is create an environment where there is zero tolerance. I think that starts first with education and awareness. Then, when behavior is egregious, then people have to be called out on that.”

...

But highlighting one group could put local schools working to curb the practice in a tough place, warned Neal McCluskey, associate director of the Center for Educational Freedom at the libertarian Cato Institute.

According to McCluskey, singling out specific groups for special consideration could occur at the expense of other victims not on a list of protected students.

“The federal government does have legitimate role to play in ensuring that schools do not allow systematic discrimination to occur in schools and certainly perpetrated by schools,” McCluskey said. “The problem starts when the federal government identifies specific groups that are somehow going to be more protected or identified for protection to the exclusion of other groups. So the person who’s just a ‘nerd’ doesn’t get the same level of protection because ‘nerds’ are not identified as a specific group in federal legislation.”

For weeks this year, anti-bullying advocates have lobbied at the U.S. Capitol, teaming up with parents and children to push Congress to address the issue. On Wednesday, the group AbilityPath.org, an online network of families with children who have mental and physical disabilities, sponsored the forum where Speier announced her intention to introduce the bill.

Washington Republican Rep. Cathy McMorris Rodgers, who has a child of her own with Down syndrome, joined Speier, along with “Glee” actress Lauren Potter, who has become a national celebrity spokesman for the group.

IDEA Fairness Restoration Act

A release from the Council of Parent Attorneys and Advocates:

Yesterday, on March 17, 2011, federal legislation was introduced to allow parents to recover expert witness fees in due process hearings and litigation under the Individuals with Disabilities Education Act.

The IDEA Fairness Restoration Act was introduced in the Senate (S.613) by Senator Tom Harkin (D-IA), Chair of the Senate Health Education Labor and Pensions Committee; Senator Barbara Mikulski (D-MD), and Senator Bernie Sanders (I-VT); and introduced in the House of Representatives (H.R. 1208) by Congressman Chris Van Hollen (D-MD) and Congressman Pete Sessions (R-TX).

As COPAA members are likely aware, in its Arlington Central School District v. Murphy (2006) decision the Supreme Court decided that parents who win/prevail in their IDEA cases cannot get expert witness fees under the provision in the law that allows parents who win/prevail to get attorneys’ fees. Although the legislative history to the IDEA fees provision clearly states that expert fees are covered the Supreme Court refused to consider that history.

COPAA has worked hard since that damaging decision was announced to obtain a legislative fix. Congressmen Van Hollen and Sessions have championed this issue for us in previous legislative sessions. This is the first bill time a bill was introduced in the Senate. COPAA is grateful to all of the members of Congress who are taking the lead on this important legislation.

The bipartisan IDEA Fairness Restoration Act will restore Congress’ original intent and make due process hearings more equitable and affordable for parents of children with disabilities.

Without the ability to recover their expert witness fees, few parents could afford to exercise their constitutional and IDEA rights to challenge denial of FAPE to their children by school districts.

This is because parents, who increasingly have the burden of proof after the Supreme Court decision in Schaffer v. Weast, must present admissible evidence about educational methodology, complex behavioral supports, medical issues, and other technical subjects. Only qualified expert witnesses can present this technical testimony and such testimony can easily cost many thousands of dollars, money that few parents have.

There can be no equal opportunity and access to a public education that is both free and appropriate unless all families of children with disabilities–rich, poor and those in the vast middle–can obtain an education on the same terms. Without the ability to recover expert costs, the due process playing field ceases to be level or fair.

From Senator Harkin's floor statement:

This IDEA Fairness Restoration Act clarifies Congress’ express intent that parents should recover expert witness fees, as they currently can do with attorneys’ fees, if they prove that the school system has wrongfully denied their child an appropriate education as defined by IDEA. By including ‘‘reasonable expenses and fees of expert witnesses and the reasonable costs of any test or evaluation which is found to be necessary for the preparation of the parent or guardian’s case’’ and reestablishing the right of judges to award such fees to parents who prevail in IDEA cases, as Congress intended, this legislation will level the playing field and restore the ability of low- and middle-income parents to be effective advocates for their children’s educational needs.

This legislation is an essential step for protecting the rights of students with disabilities and ensuring that all families, regardless of their financial resources, can advocate for and protect their children’s rights through due process.

Autism and Popular Culture

Jean Winegardner writes at "Autism Unexpected," The Washington Times:

Perhaps the greatest problem with the way autism is treated on television, other than its dismissal of more severe forms, is that television is intrinsically shallow; processes that take months in real life happen in days in TV land. Problems that last for weeks, months and years in real families dealing with autism, get tackled and solved almost immediately on television.

For instance, I'm still annoyed that Max's family suspected Asperger's, got a diagnosis and found the perfect school and behavioral specialist for him in about a week. In my experience, it takes two to six months to even get an initial appointment with any developmental pediatrician, let alone the area's premier one, such as the Bravermans did.

As the parent of a child with autism, I get asked a lot if various portrayals on television are realistic. I am encouraged that parents of neurotypical children want to learn about life with autism and I am grateful for shows like "Parenthood," which start this conversation. I am happy about shows like "The Big Bang Theory," which raise questions about what it is like to be an adult with Asperger's or other neurological differences and shows that it is possible to be successful even if quirky. I am thrilled to see the public embracing actual individuals with autism, such as James Durbin, who are showing us that being a cookie cutter person is not necessarily the best way to make an impression in the world.

Television has a long way to go, but it is making strides, and for that I am grateful. I hope that this trend of exploring autism in popular culture continues. I'll be in a front row seat.

The increased visibility of autism in popular culture dates back to Rain Main and has become even more salient in recent years. Back in 2007, Caryn James wrote in The New York Times:

AUTISM has become to disorders what Africa is to social issues, the celebrity cause du jour. “Oprah,” “Larry King,” “The View” and MTV all devoted full hours to the subject in recent weeks, sometimes with appearances by the singer Toni Braxton (the mother of a boy with autism); the disorder is the focus of documentaries now making the festival circuit, like “Autism: The Musical.” Most intriguingly, it has turned up in a spate of dramas that take autism beyond “Rain Man.”

Sigourney Weaver snaps “I’m autistic” at Alan Rickman in the current “Snow Cake,” while in the past year Josh Hartnett and Radha Mitchell played an autistic couple in “Mozart and the Whale,” and Hugh Laurie’s character pretended to be autistic on “House.”

Dunkle on Autism

In the Washington Post, Margaret Dunkle has a letter responding to an earlier article:

The March 13 front-page article “ In assault case, anxious parents recognize ‘dark side of autism’  ” underscored a reality that haunts families like mine that are touched by autism. But it is not fear of violence. Rather, it is the demographic reality that children with autism quickly become adults with autism.

As limited as research about young children with autism is, we know even less about adolescents and adults on the autism spectrum. No one can answer the questions of parents who worry: “Will my son ever hold a job? Who will protect my daughter from predators? What will happen when I die?”

The oft-cited autism rate of 1 in 110 actually applies to children born in 1998. Today’s rate is probably higher. For example, one in 88 children in military families and one in 28 Somali children in Minnesota has autism.

In just a few years, these children will age out of special education programs. Yet our adult employment, health, social service, disability and justice systems are totally unprepared for these individuals as adults.

Let’s hope that Theresa Vargas’s grim article jolts policymakers to turn their attention to the growing numbers of adults with autism — and also to get to long-overdue answers about the causes of autism and effective interventions.

See her graphic depiction of how multiple programs might affect one Los Angeles family.

Texas Cuts

Dr. Joyce Elizabeth Mauk, president of the Child Study Center, writes in The Fort Worth Star-Telegram:

Our state's checkbook is in trouble -- no surprise there. Solving the budget crisis in Austin will require significant cuts to many programs and services. That is no easy task, and officials at the Child Study Center are certainly aware of the complexities involved. However, damaging the future of our community's most vulnerable children is unequivocally not the best answer for balancing Texas' budget.

Local children with autism are cared for through funding from the Assistive and Rehabilitative Services Department. The Child Study Center's Applied Behavioral Analysis program provides early intervention to autistic children ages 3 to 8 from 75 counties statewide.

Sixty-four percent of behavioral analysis funding comes from Rehabilitative Services. The remainder is from private donations as well as medical insurance -- a perfect example of a successful public-private partnership.

...

The behavioral analysis program started as a pilot project almost four years ago. We have improved the lives of more than 150 children, many of whom are functioning alongside their peers. Because of state funding, hundreds of children like Donnie have moved from throwing tantrums 90 percent of the day, refusing foods and refusing to use the toilet to becoming pleasant, polite and social youngsters.

There is no suitable alternative for children with autism in our public education system. The programs provided by the center are the only way that modest and low-income Fort Worth-area families of children with autism can possibly hope to access the intense service that will change their children's lives.

Diagnosis in Missouri

KOAM, Pittsburg, Kansas, reports on the Ozark Center for Autism:

Medicaid Waiver in Montana

Previous posts have dealt with state Medicaid waivers. The Billings Gazette reports on Matt and Beki Wald, who have taken advantage of Montana's waiver.

As money concerns were mounting, the Walds heard of a new program that the Montana Department of Health and Human Services was launching called Children's Autism Waiver. The program was prompted by an "explosion" of calls to DPHHS from "parents in crisis," Jeff Sturm, the developmental disability program director for DPHHS. The number of calls run parallel to what is happening across the country. An estimated 1.5 million Americans are affected by autism, according to the Autism Society of America.

To be eligible for the program, a child must be between 15 months and 5 years old. The service includes 20 to 25 hours per week of intensive in-home rehabilitation for three years by a trained provider.

The program, started in 2009, serves 50 children with autism throughout the state at a cost of $40,000 per year per child. The $2 million program is funded with a combination of $600,000 from the state's general fund and federal money.

When the program began, the recipients were chosen by lottery.

Beki was on her way to pick up one of her older sons from school when her cell phone rang. She had literally won the lottery.

"I pulled over to the side of the road and started crying," she said. "We were ready to drop Kannin's occupational therapy because money was becoming an object."

Waiver services also include occupational, physical and speech therapy, and transportation among other goods and services. For Kannin, other goods and services include diapers, as he is not yet toilet-trained. The waiver also helped the Walds purchase a trampoline so he could jump and gain balance.

Redstone Contribution

A release from Autism Speaks:

Autism Speaks, North America's largest autism science and advocacy organization, today announced that Sumner M. Redstone has donated $500,000 as a lead gift to support Autism Speaks' Translational Research Initiative, an effort to accelerate the discovery of treatments for autism, including pharmacological therapies. This most recent gift brings Mr. Redstone's total commitment to Autism Speaks to $1.7 million.

“I'm pleased to continue my support of the groundbreaking work being done by Autism Speaks,” said Mr. Redstone. “My hope is that this leadership gift will inspire others to join me in support of the translational research initiative, which is enormously important and has the potential to provide solutions to families affected by autism.” Mr. Redstone is Executive Chairman of Viacom Inc. and CBS Corporation, and Chairman and CEO of National Amusements Inc.

The Wall Street Journal reports:

According to the Centers for Disease Control, autism affects an average of one in every 110 American children—including one in 70 boys—and "there's no evidence that this dramatic rise in autism is slowing," says Geraldine Dawson, chief science officer for Autism Speaks.

Children, adolescents and adults with autism suffer with difficulties in the areas of social interaction, communication and learning, and other kinds of medical problems like sleep disorders and seizures.

The core of the current research conducted by Autism Speaks focuses on translating the basic biology that researchers have learned about autism into new methods of diagnosis or treatment. The science suggests that even though autism has many different genetic and environmental causes, their effects may converge on a set of common pathways in the brain.

"For the first time we have the possibility of developing medicines that could help to restore the function of these pathways," says Dr. Dawson. Ultimately these medicines would help to reduce the core symptoms of autism.

Mandate Action in West Virginia and Rhode Island

The Charleston Daily Mail reports:

Kanawha County Delegate Mark Hunt was saying "thank you" a lot to his fellow lawmakers Saturday night.

For the past six years, Hunt, a Democrat, has been pushing legislation aimed at easing the burden on families with autistic children.

That's included proposing tax credits for autism treatments as well as mandating insurance coverage for autism spectrum disorder.

But in each of those years, the state Senate and House of Delegates were unable to reach agreement on the measures, drawing criticism from Hunt.

But in the waning hours of the legislative session Saturday, the House unanimously approved an amended a version of House Bill 2693, which requires the Public Employees Insurance Agency, Children's Health Insurance Program and most private insurers to cover autism treatment beginning July 1, 2011.

When asked how he felt after the vote, Hunt said, "Great.

"It's been a real struggle to get this passed - we went through hell and back."

Supporters lobbied hard for the bill all session, staging several events at the Capitol along the way.

Members of autism awareness groups cheered from the House gallery as the measure passed.

AP reports:

Rhode Island insurance companies would be required to cover therapies for the treatment of autism under a bill in the state's General Assembly.

The House Corporation Committee will hold hearings on the bill Tuesday evening.

Parents of children with autism have long complained to lawmakers that insurers refuse to pay for expensive treatments for the disorder. Rep. Peter Palumbo, a Cranston Democrat, is the lead sponsor of the legislation.

Similar bills have been introduced around the country. The cost of autism treatments, often called applied behavior analysis, can run into the tens of thousands of dollars per year. Insurers have told lawmakers that mandating coverage of the treatments could lead to increased costs for all policy holders.

Autism and the Police: A Tragedy

Earlier posts dealt with the Neli Latson case. The Washington Post provides an update:

When a Stafford County jury this month found an autistic teenager guilty of assaulting a law enforcement officer and recommended that he spend 10 1/2 years in prison, a woman in the second row sobbed.

It wasn’t the defendant’s mother. She wouldn’t cry until she reached her car. It was Teresa Champion.

Champion had sat through the trial for days and couldn’t help drawing parallels between the defendant, Reginald “Neli” Latson, 19, and her son James, a 17-year-old with autism.

James might have said this, she thought. James might have done that. She had fresh bruises on her body that showed that James, too, had lost his temper to the point of violence.

“This is what we live with,” said Champion, of Springfield. “When they go over the edge, there is no pulling back. ”

...

The issue resonates not only with parents but with police. Every year, the International Association of Chiefs of Police picks one major issue to address at a national summit. In 2010, it was improving police response to people with mental illness and such conditions as autism.

“It has been a huge and significant part of our conversation in the last couple of years,” said John Firman, director of research for the organization.

Firman, who participates in the Big Brother program, has a “little brother” with Asperger’s. He said that when he goes out with the youngster, he sometimes wonders, “If anything would happen here, how would police deal with him?”

Among the summit’s recommendations, Firman said, were that all officers be trained in how to deal with such people and that police work closely with families and community organizations.

Latson’s case, however, was not a matter of a law enforcement officer being untrained, the prosecutor said. “This deputy has a 33-year-old mentally retarded child,” Olsen said. “So the deputy is very sensitive to dealing with children with disabilities. He’s lived it every day for the last 33 years.”

Abuse at State-Run Homes in New York

The New York Times reports on abuse in state-run homes for the developmentally disabled:

The Times reviewed 399 disciplinary cases involving 233 state workers who were accused of one of seven serious offenses, including physical abuse and neglect, since 2008. In each of the cases examined, the agency had substantiated the charges, and the worker had been previously disciplined at least once.

In 25 percent of the cases involving physical, sexual or psychological abuse, the state employees were transferred to other homes.

The state initiated termination proceedings in 129 of the cases reviewed but succeeded in just 30 of them, in large part because the workers’ union, the Civil Service Employees Association, aggressively resisted firings in almost every case. A few employees resigned, even though the state sought only suspensions.

...

The Civil Service Employees Association, one of the most powerful unions in Albany, makes no apologies for its vigorous defense of the group-home workers it represents.

But the union’s approach — contesting just about every charge leveled at a worker — has contributed to a system in which firings of even the most abusive employees are rare. Most disciplinary measures represent a compromise between management and the union, often reached at the urging of an arbitrator chosen by both sides.

Ross D. Hanna, the director of contract administration for the association, likened the union’s role to that of public defenders, saying it was required by state law to represent its members.

“If they’re brought up on charges, we have an absolute duty to represent them,” Mr. Hanna said. “That’s our job.”

He added: “When we know the person is guilty, we try to convince the person to get out of it by resigning. But if the person decides to go forward, we have to do our best job.”

Nevada Cuts

At the Las Vegas Review-Journal, Paul Harasim writes:

[Governor Brian] Sandoval's proposal for balancing the budget without raising taxes eliminates one autism program, which serves 174 children. That move would save the state $800,000. The program already had lost its federal funding of $1.4 million. The budget also cuts $800,000, or 25 percent, of the funding for a second program, which now serves 110 children. Less than 90 children could be helped under that scenario.

Under both programs, parents can get up to $1,500 a month to pay for treatment, with money dropping to less than $800 as the child grows older.

"We should be giving more children help, not less, particularly when you consider we have thousands of children with autism in Nevada," said Jan Crandy, a member of the Nevada Commission on Autism Spectrum Disorders. "It's going to cost us much more not to provide it. Millions and millions of dollars."

Research has found that prevalence of autism is about 1 in every 110 births in the United States, translating to about 6,000 youngsters with autism in Nevada today.

Almost half the children with autism who received extensive early intervention go on to lead independent lives as adults, according to a 1987 study by autism expert Ivor Lovaas.

Without that treatment, more than 90 percent will need lifelong support from taxpayers, which can run up to $6 million per individual, experts say.

A third state program that serves children with many different special needs, including the autistic, would see an increase under Sandoval's budget, from $22 million to $24.5 million by 2013. It's an early intervention program providing up to seven hours of therapy a week for children up to age 3, but not necessarily Applied Behavior Analysis treatment.

Two bills in the Assembly, one sponsored by Melissa Woodbury, R-Las Vegas, and the other by James Ohrenschall, D-Las Vegas, would keep funding in place for the same number of autistic children. So far, neither has said how they would pay for that. Woodbury also has introduced another bill that would track the effectiveness of autism programs.

The Legislature passed an Ohrenschall-sponsored bill last session to force insurance companies to guarantee treatment of children with autism, particularly in the critical early years. But those mandates don't apply to about 40 percent of plans, which fall outside the purview of state regulation.

Among the plans that can ignore the law are those covering some government workers and collective bargaining trusts.

Video here.

Smaller Cuts in CA

At The Sacramento Bee, Jack Chang reports that advocates for the disabled have made effective use of first-person testimony:

Assemblywoman Holly Mitchell, D-Los Angeles, said she and other legislators have been moved by days of such testimony.

Advocates not only filled the budget subcommittee hearings Mitchell oversaw last month but spilled out into the hallways outside and held marches around the Capitol grounds. Some parents traveled hundreds of miles with their children and waited in lines for hours to testify.

The Senate budget committee eventually reduced proposed cuts to the Department of Developmental Services by 37 percent after the Legislature heard hours of testimony.

"You can see flat statistics on a piece of paper," Mitchell said, "but then you hear a mother talk about 'I am a parent of an adult with a developmental disability, and my husband and I lay awake at night wondering what will happen.' ... I truly believe all of those witnesses and the thousands of witness communications we received made a significant difference."

...

"If you're looking at the cost in the state budget, those monies could be better used by putting it in resources and communities so individuals could transition out to the communities where they belong," said legislative advocate Evelyn Abouhassan of the group Disability Rights California.

At the end of the day, Gov. Brown has said he needs to bridge the state's budget deficit and meet hard numbers, which means cutting programs that many depend on.

On the other side of the table, though, family members such as Doherty have their own job, said advocate Marty Omoto: reminding the governor and legislators what's at stake.

"There's a lot of people who would never have become advocates if they hadn't had a loved one who needed help," Omoto said. "It is scary to testify and organize, but it's out of fear going back several years now, and then it changes to anger and rage."

At CDCAN [Califorinia Disability Community Action Network], Omoto adds:

Budget legislative language – called “budget trailer bill” language (because the bills that make necessary changes in state law to implement changes in the State budget follow the main budget bill), soon to be released calls for the $174 million cut in State general fund spending for regional center community-based services to be achieved by “best practices” instead of language that focused on a proposal for statewide standards to limit or reduce regional center services – referred to as “statewide standards for the purchase of services”. The Budget Conference Committee approved that action last week when it completed its work, though details on what the various budget related language had not been finalized and or available yet.

Autism Data and Schools

24/7 Wall Street reports:

Data reviewed by 24/7 Wall St. shows there has been a 76% increase in the number of reported autistic students in public schools between 2004 and 2009, according to The U.S. Department of Education’s Child Count data. More than a half-dozen states including Pennsylvania, Indiana, Oregon, Colorado, Nebraska, Rhode Island North Dakota and Wyoming showed that their autistic student populations have doubled or more than doubled. States such as Mississippi, Tennessee and Connecticut showed gains of 90% or more. The government data shows that there are approximately 330,000 students classified with the disorder by their school district though estimates of the true rates are higher.

Federal data pegs the costs of educating a student with the condition at $18,800 a year, roughly three times as much as a child without autism. These figures are likely out-of-date since they were from the 1999-2000 school year and were contained in a 2005 GAO report.

Not only was there a huge jump in the number of autistic students, but the variations in the percentage of students with the disorder varied widely from state to state. Minnesota, for one, says its autism rate was .99% of all students among 6 to 21 year olds, the highest reported of any state for the 2008-2009 school year. Iowa was the lowest at .11%. Both states say there are reasons for their rankings.

“Consistent with the dramatic increases observed in every state, the Minnesota Child Count for this age group in this category, increased over the past 10 years,” writes Christine Dufour, a spokeswoman for the Minnesota Department of Education, in an email. “Yet, the true rate for Minnesota is unknown. There has never been a true prevalence study conducted here. …. There are several reasons why it is difficult to make comparisons to other states’ identification rates: Every state has established a different criteria for eligibility under the Autism Spectrum Disorder (ASD) category, so some differences should be expected. Some states criteria are more strict and others more inclusive. For example, Minnesota specifically includes individuals with Asperger’s in its ASD criteria and some states do not.”

Officials in Iowa realized that their data was probably wrong and are planning to conduct a survey in April of parents to get a more accurate picture, says Sue Baker, an official with the Iowa Department of Education. “We have been asking ourselves why,” she says, adding that one reason for the state’s low score might be that “you don’t need a medical diagnosis for autism to get services. That confounds how we count children.”

Iowa’s latest unofficial autism student count for the 2009-2010 school year was 5,127, up from 4,502 the previous year, she says, adding that Iowa is one of the few states permitted by the U.S. Department of Education to provide special education services on a “non-categorical” basis.

“We definitely increased our training and awareness about autism,” says Theresa Coons, an education specialist with the Nebraska Department of Education. “We basically started that in 2001 and 2002. Some children could have been identified in a different category.”

See The Data Accountability Center.

IACC Strategic Plan

Previous posts described the drafting of the IACC Strategic Plan. A couple of weeks ago, the final version came out:

The Interagency Autism Coordinating Committee (IACC) has released its 2011 Strategic Plan for Autism Spectrum Disorder (ASD) Research, which is intended to provide a blueprint for future ASD research efforts. The Plan provides a set of research recommendations to guide federal autism research efforts and serves as a basis for partnerships with other agencies and private organizations involved in ASD research and services.

"Federal and private investment in autism research has increased markedly in the past two years," said IACC Chairman and NIMH Director Dr. Thomas Insel. "At the same time, the IACC has heard from the community about the growing need for research and the importance of new areas for rigorous scientific study. This updated research Strategic Plan builds on recent discoveries and emerging opportunities to identify new areas where science can make a difference for individuals and families with ASD."

Several new areas of focus have been identified in the 2011 Plan, including studies on the use and accessibility of Alternative and Augmentative Communication (AAC) tools for nonverbal individuals on the spectrum and studies of health promotion and the prevention of related health concerns such as obesity and mental health issues. In addition, in response to public concerns about the health and safety of children and adults with autism, the committee added new objectives related to understanding safety issues that may contribute to the increased risk of injury and premature death that has been reported in the literature.

In total, the IACC added 16 new objectives to the Plan during the update and added an addendum section to each chapter describing what has been learned over the past year, what gap areas have emerged, and what progress has been made in fulfilling the existing objectives. During the annual update of the Plan, which is required under the Combating Autism Act of 2006, the IACC considered input from ASD community, advocacy groups, research funding organizations, and the scientific community. Also incorporated was information from the IACC Portfolio Analysis of ASD Research Funding in 2009 (the most recent year for which there was complete funding data), the 2010 IACC Summary of Advances in ASD Research, the Request for Information (RFI) on the 2010 Plan, and the proceedings of the IACC Services Workshop held in November 2010.

In developing the 2011 Plan, the committee highlighted many successful collaborations that have been recently formed among member agencies and organizations. These collaborations included a joint conference held by the National Institute of Environmental Health Sciences (NIEHS) and Autism Speaks on autism and the environment; an information portal called AutismNOW supported by the Administration for Children and Families (ACF), in partnership with the Autistic Self-Advocacy Network (ASAN) and the Autism Society; and the Autism Informatics Consortium, which is designed to improve the utility and usability of informatics tools for ASD researchers and represents a collaboration between NIH, Autism Speaks, and the Simons Foundation. These public-private partnerships embody the spirit of collaboration described in the Plan's Mission Statement and are critical to making progress toward understanding ASD and improving the lives of people on the spectrum, as well as those of their families.

***

The Interagency Autism Coordinating Committee (IACC) is a federal advisory committee that was created by Congress in an effort to accelerate progress in autism spectrum disorder research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community.

The committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates and other members of the autism community.

West Virginia Bill Progresses

AP reports on West Virginia mandate legislation:

A Senate Finance subcommittee has agreed to the annual benefit caps proposed in the bill when it passed the House last month. The subcommittee amended the bill so benefits would not start until age 2.

The subcommittee also exempted health plans for employers with 25 or fewer workers. It would otherwise require private and public insurers to pay for applied behavioral analysis.

This ABA therapy is considered crucial for children with autism spectrum disorder. But insurers warn that mandating such coverage will increase costs.

The bill advances to the full committee. The session ends midnight Saturday.

The Charleston Gazette strongly endorses it:

Opponents argue that insurers would just raise everyone else's rates. No doubt. But even if everyone were asked to pay another $1 a month so that children with autism could receive this treatment, how is that different from paying so that people can have heart surgery, or treatment after a car crash? Not everyone has heart attacks or car wrecks, but everyone pays to insurance pools to cover those treatments. That is what insurance is for.

Autism is a biological problem that interferes with a child's ability to develop and function up to the child's potential. Until a cure is found, the best treatment is to minimize the ill effects.

Insurers get hung up on whether this treatment is medical or educational. But patients expect to engage in physical or occupational therapy after surgery, serious illness or injury. It is an accepted part of recovery -- regaining function.

For children with autism, good, consistent therapy early enough can change the trajectory of their lives. It can make the difference between being able to talk, communicate, study and work, or growing up frustrated, isolated and dependent.

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

Service Dog Decision in Oregon

An earlier post dealt with a Hillsboro, Oregon, school district that forbade a child on the spectrum from bringing a service dog to school. The district has now reversed itself. KATU in Portland reports:

Due to a federal investigation, the school district had to make a decision, and Oregon’s attorney general laid it out bluntly: It could be a long, expensive lawsuit. So, Scooter Givens’ service dog, Madison, will be allowed during a trial period at Patterson Elementary.

“We’re thrilled; we’re absolutely thrilled,” said Scooter’s mother Wendy.

By being tethered to Scooter, Madison keeps him from bolting and can find him if he does run off. He also helps to calm the 10-year-old during violent tantrums.

“Madison’s trained to touch him or nuzzle him and kind of distract him from that,” said Wendy.

The debate really hinged on whether Madison is a service dog or a therapy dog. Therapy dogs are not covered by the ADA but service dogs are. And service dogs can be used for people with autism.

“A therapy dog to me wouldn’t be highly trained,” Wendy said. “It isn’t tasked trained. It couldn’t do the tethering. It couldn’t do the behavior disruption. So I knew all along this was not a therapy dog. I think the school district may have just been saying that to try and slip this through.”

“We felt that it wasn’t necessary to bring in the dog,” said Beth Graser, spokeswoman for the Hillsboro School District. “If we had seen early on that the student was not able to access his education, we would have allowed the dog a lot sooner.”

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.”

Background on Autism Insurance Coverage

At The Wall Street Journal, M.P. McQueen offers a good backgrounder on the state of insurance coverage:

An estimated one in 110 children is diagnosed with autism in the U.S., and its prevalence is increasing for reasons that aren't well understood, according to the U.S. Centers for Disease Control and Prevention. Average medical expenditures for those with autism-spectrum disorders exceed those without by $4,110 to $6,200 per year, the CDC states.

In response, at least 23 states, including Indiana, South Carolina, Arizona and Massachusetts, have passed laws in the last few years requiring state-regulated group health plans to include autism coverage, according to the National Council of State Legislatures, though many states have caps on the mandates. Most other states and Washington, D.C., have similar bills pending, according to Autism Speaks, an advocacy group. Only Oklahoma, Utah and Wyoming don't have bills requiring autism coverage on their agendas.

The Edmond Sun follows up on Oklahoma:

House Bill 1248 by state Rep. Randy Grau, R-Edmond, would have introduced coverage for children with autism and related disorders when they either don’t have private insurance or their private insurer doesn’t cover the disorder, 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.

“I talked to the chairman and he just said he didn’t want to hear it,” Grau said of Oklahoma House Appropriations and Budget Committee Chairman Earl Sears, R-Bartlesville.

HB 1248 (Solomon’s Law) is named after 7-year-old Solomon Littleton of Edmond who was denied insurance coverage after contracting Landau-Kleffner syndrome. Solomon was 5 years old in 2008 when he contracted the rare neurological disease. Eric and Marci Littleton saw their twin son’s normal life deteriorate with a loss of motor skills.

Grau discussed HB 1248 this week with House Speaker Kris Steele, R-Shawnee. Steele wants to help support children with autism spectrum disorders, Grau said. But the speaker wants to delay consideration of Grau’s bill pending evaluation of a new Sooner Start program that is based on Senate Bill 135.

SB 135 went into effect in January. It was authored by Steele and state Sen. Ron Justice, said Lisa Liebl, press secretary for Steele.

Sooner Start is an early intervention and treatment program for children with disabilities and developmental delays age birth to 3. Solomon was 5 years old when he contracted Landau-Kleffner syndrome.

Also see earlier posts on Oklahoma scholarships for kids on the spectrum.

No White House Blue

Disability Scoop reports:

Despite a social media push from Autism Speaks, the White House says it will not be lighting up blue in honor of World Autism Awareness Day next month.

Autism Speaks encouraged its members to flood the White House with messages on Facebook and Twitter to encourage President Barack Obama to light his home blue on April 2 in honor of autism awareness.

Already, over 250 landmarks around the world will participate in the advocacy organization’s annual “Light It Up Blue” initiative including the Empire State Building, Rockefeller Center, Niagara Falls, Christ the Redeemer statue in Brazil and the Sydney Opera House in Australia.

“Lighting the White House, America’s most prominent building, blue would certainly elevate awareness of autism and World Autism Awareness Day to another level,” said Adam Pockriss, an Autism Speaks spokesman.

But the White House told Disability Scoop on Friday that 1600 Pennsylvania Ave. will not participate. No reason was given for the decision.

Autism and Divorce

At the Huffington Post, Vicki Larson writes of Jenny McCarthy

Her advocacy and best-selling books, Louder Than Words: A Mother's Journey in Healing Autism and Mother Warriors: A Nation of Parents Healing Autism Against All Odds brought to light the high rate of divorce within the autism community -- as high as 80 percent. Although that number has been disputed, it helped spur the National Autism Association to create a program to help families with autistic children afford marital counseling.

The 80 percent figure is more than "disputed." It is bogus. As earlier posts have explained, parents of ASD kids do not have unusually high divorce rates.

New Prevalence Data

Science Daily presents a news release on a Norwegian study:

A sub-study of Autism Spectrum Disorders (ASD) headed by Ms Posserud was conducted as part of the "Barn i Bergen" (Children in Bergen) project. The study shows that the diagnosis of ASD may apply to as much as one per cent of the population.

ASD is a collective term for diagnoses such as autism (childhood autism), Asperger's syndrome, atypical autism and other autistic traits. The classic signs of autistic behaviour include communication difficulties, poor social skills, repetitive behaviour and narrowly focused interests.

A study conducted in 1998 found that autism occurred in 0.05 per cent of Norwegian children. The figures from the "Barn i Bergen" project could therefore be interpreted to mean that the incidence of autism has risen dramatically. However, Ms Posserud thinks it is important to downplay the difference in results.

"It is difficult to know whether the differences in these studies reflect a genuine increase in the incidence of ASD. Our conclusion is that the rise in ASD can be explained mainly by the use of more thorough mapping methods and, consequently, that we are not seeing the emergence of an autism epidemic," says Ms Posserud, who is a doctor and researcher in the field.