New Study on Diagnostic Criteria and Prevalence

A reanalysis of 1989 data suggests that diagnostic substitution may account for much of the increase in autism prevalence. Shaun Heasley reports at Disability Scoop:

The original study, published in 1989, looked at hundreds of Utah residents ages 3 to 25 who were suspected to have autism. Clinicians used DSM-III criteria to assess individuals as “diagnosed autistic” or “diagnosed not autistic” and ultimately found an autism prevalence rate of 4 in 10,000 in Utah at that time.

But when a research team from the University of Utah applied current diagnostic criteria from the DSM-IV-TR to records from participants in the two-decades-old study, they found that most who were deemed to be autism-free at that time would receive the label today.

What’s more, the study authors indicate that the vast majority of those who went overlooked in the original study had low IQ’s and would now be diagnosed with both autism and intellectual disability.

“Thus, while it is well known that current DSM-IV-TR criteria increased the identification of high functioning individuals, our results indicate that they also increase identification of ASD among individuals with autism and intellectual impairment,” wrote researchers in the study published online in the Journal of Autism and Developmental Disorders this month.

The analysis found that 59 percent of those who were “diagnosed not autistic” in the 1980s would qualify as having autism today, while an additional 38 percent of people in this group showed some characteristics of autism.

Autism and the Health Care Decision

Autism Speaks issued a statement on the Supreme Court's decision in the health care case:

"The need for people with autism to get good quality care is Autism Speaks' first priority. Today's decision by the U.S. Supreme Court upholding the constitutionality of the Affordable Care Act provides clarity to our efforts to achieve that mission. It should be noted that the decision does not affect the autism insurance reform laws enacted by 31 states.

"The Affordable Care Act requires all states to establish a set of 10 'essential health benefits,' one of which is 'Mental health and substance use disorder services, including behavioral health treatment.' Congress specifically added 'including behavioral health treatment' to address autism therapies, such as Applied Behavior Analysis.

"For the past several months, Autism Speaks has raised concerns with the U.S. Department of Health and Human Services (HHS), which is overseeing the implementation of the ACA, that the requirement for behavioral health treatment coverage is not being pursued. Congress required such treatment be included as an essential health benefit and the U.S. Supreme Court has held the act constitutional. It is now the obligation of HHS to respect the intent of Congress by insisting all states include behavioral health treatment, such as ABA for autism."

You can learn more about Autism Speaks and the Affordable Care Act here.

From the Autism Society:

Today the Supreme Court issued its decision on the Affordable Care Act. The decision of the Court is a part of our nation's founding principles of checks and balances among our government institutions.

Regardless of today’s decision, the reality is that the problems faced by individuals living with autism and their families remain unsolved. We are continuing to struggle to access the services we need. Never mind that more than 30 states have recently required insurance providers to cover certain autism-related treatments and services. In many of these same states, individuals with autism are denied basic coverage. In fact, with ongoing cutbacks in government funding, more and more of us are using limited funds to pay for therapies, personal assistance or other necessities, and often times we cannot afford basic insurance for preventative care.

Often, when individuals receive medical coverage, they lack assistance for behavioral treatments, such as Applied Behavior Analysis (ABA), which for some individuals can be more necessary to improving outcomes than medical approaches. For those of us more significantly affected by autism, treatment can cost up to $72,000 per year. This cost is difficult for many families, particularly in times of need.

The Autism Society believes all governmental and non-governmental entities must understand that any health-care reform must not preclude individuals with developmental disabilities from life-changing therapies. In addition, for health-care to be effective, autism must be viewed as a whole-body condition that requires medical and non-medical treatments. While we applaud the federal and state continued support of Medicaid and Medicare, we need to do more

From Easter Seals:

Easter Seals applauds the U.S. Supreme Court on its Affordable Care Act (ACA) ruling. The Court’s ruling ensures the continuation of the law’s policies that protect access to private health insurance for children with pre-existing conditions and young adult dependent children up to the age of 26, bar lifetime health insurance caps, and leaves in place the essential policies that will take effect in 2014. Easter Seals believes access to appropriate and high quality health care services is essential for people with disabilities to live, learn, work and play in their communities. Simply put, the ACA is critical to millions of families living with disabilities.

Delaware Passes Insurance Mandate

WDMD radio (Lewes, Delaware) reports on passage of an insurance mandate:

The bill that would require insurance companies to provide coverage for screening and diagnosis services for children with autism was passed unanimously Wednesday afternoon by the Delaware House.

Senate Bill 22 will require insurance companies to cover for the screening and diagnosis of autism spectrum disorders in children under 21. The bill will also require insurers to provide for behavioral analysis and treatment. The CDC announced this spring that now, one out of every 88 children are diagnosed with some form of autism, including one out of every 54 boys.

The bill was passed by a 20-0 vote in the Senate on June 7, and now goes to Governor Markell for his signature. Click here to read the full bill.

Earlier, Jonathan Starkey reported at The News Journal [Wilmington, DE]:

Delaware’s legislation would come with a cost. The state’s self-insured health plan – which would not be required to cover autism treatments under the bill, but is expected to adopt its mandates – would face $2.7 million in additional charges over three years under the new mandate, according to estimates from the state Controller General’s Office. Higher premiums for state employees are possible.

William Kirk, vice president at Blue Cross Blue Shield of Delaware, said the state’s largest private insurer has not compiled cost estimates but said higher premiums are possible with a mandate.

“It’s a crystal ball sort of thing,” Kirk said. “We have no direct experience pricing this.”

See here for coverage of a previous version of the bill. 

West Virginia and BACB

Previous posts described the attempt by West Virginia psychologists to claim jurisdiction over behavior analysts.  AP reports:

West Virginia does not appear to need its own regulatory board to oversee specialists who treat children with autism, given current national standards, a Tuesday report presented to lawmakers concluded.

The legislative audit found that the national Behavior Analyst Certification Board "provides adequate and sufficient protection to the public."

The findings arrive after the West Virginia Board of Examiners of Psychologists sought to claim jurisdiction over behavior analysts last year. The board dropped that attempt following a lawsuit and an outcry among parents of children diagnosed with these neurological conditions.

These specialists provide applied behavioral analysis, a treatment considered crucial by experts for many children with an autism spectrum disorder. These conditions are marked by problems with communication, behavior and social skills. The range includes a severe form called autistic disorder and the much milder Asperger's syndrome. Tuesday's report said the number of West Virginia schoolchildren diagnosed within the spectrum increased to 1,474 during the just-completed school year from 372 during 2001-2002.

"It is a distinct profession with distinct training that pulls from many difference degree programs in order for a certification to be specialized," Susannah Poe, the state's only behavior analysts who is also a licensed psychologist, told the House-Senate committees that received the report.
...
Welcoming the audit's conclusion, Poe blasted the psychology board for trying to force behavior analysis to work under the paid supervision of licensed psychologists.

"This current board of examiners filed an unprecedented and unnecessary emergency order that immediately restricted our professionals from engaging in the work that they had performed without complaint, without oversight or without any interest from the board," Poe said.

Brain Research News

Previous posts have noted how the media cover research on early detection. Here is an appropriately cautious story from HealthDay:

Electroencephalogram (EEG), a test that shows the electrical activity of the brain, might be used to spot autism in children, a new study suggests.

The study, conducted by researchers at Harvard University Medical School, looked at the synchronization of brain activity across different brain regions, as measured by EEG.

"These scientists used sensors to record electrical brain activity across many different regions on the scalp," explained Geraldine Dawson, chief science officer at the advocacy group Autism Speaks. "They then looked at the extent to which brain activity from one region was synchronized with brain activity from another region," a phenomenon known as "EEG coherence," said Dawson, who was not involved in the research.

...

The research was conducted at Boston Children's Hospital and was published online June 25 in the journal BMC Medicine.

The use of EEG-based testing may help diagnose autism in children and may improve early detection in infants, leading to more effective treatments and coping strategies, the researchers said.

The New York Times reports on the aftermath of the freezer failure, citing the example of a deceased ASD person whose brain was part of the collection.

Clare True’s was one of 150 specimens stored in a Harvard brain bank that was ruined because of a freezer failure, doctors acknowledged this month. The loss, while a setback for scientists studying disorders like Huntington’s disease,Alzheimer’s and schizophrenia, especially mortified those working on autism, for it exposed what is emerging as the largest obstacle to progress: the shortage of high-quality autopsied brains from young people with a well-documented medical history.

The malfunction reduced by a third Harvard’s frozen autism collection, the world’s largest. A bank maintained by the University of Maryland has 52, and there are smaller collections elsewhere. Altogether there are precious few, given escalating research demands. The loss at the Harvard Brain Tissue Resource Center makes donations from parents like the Trues only more urgent.

“There’s just no question that human tissue is the gold standard for research, said Dr. Gerald D. Fischbach, a professor emeritus at Columbia and director of life sciences at theSimons Foundation, which promotes autism research. “You absolutely need it to answer some very basic questions.”
The Harvard fiasco, first reported by The Boston Globe, has accelerated efforts by advocacy groups to reach out to families who might donate, said Alison Singer, president of the Autism Science Foundation. “I made calls as soon as I heard what happened,” she said.

Geraldine Dawson, chief science officer at Autism Speaks — the group that administers the autism brain donations at the Harvard bank — and a professor of psychiatry at the University of North Carolina, said, “This is indeed a setback, but it has motivated us more than ever to rebuild this precious resource.”

Hearing on Seclusion and Restraint

Previous posts have discussed seclusion and restraint. For the first time this year, Congress is taking up the issue. A message from the Council of Parent Attorneys and Advocates:

COMMITTEE ON HEALTH, EDUCATION, LABOR AND PENSIONS

HEARING NOTICE

** Please note the time change. ** 

Title: Beyond Seclusion and Restraint: Creating Positive Learning Environments for All Students
Date: Thursday, June 28, 2012
Time: 9:15 a.m.
Place: SD-106 (Dirksen Senate Office Building)
Witnesses
Dr. Daniel Crimmins , Director, Center for Leadership in Disability, Georgia State University, Atlanta, Georgia
Ms. Cyndi Pitonyak , Coordinator of Positive Behavioral Interventions and Supports, Montgomery County Public Schools, Christiansburg, Virginia
Dr. Michael George , Director, Centennial School, Bethlehem, Pennsylvania
Ms. Deborah (Debbie) Jackson , parent, Easton, Pennsylvania 

RAISE YOUR VOICE in Congress
Let Congress know that now is the time to pass federal legislation that provides protections for every child in school. Even if you have told them before, tell them again – and urge everyone you know to do the same! COPAA, along with many other school, parent, and national advocacy organizations has been actively working towards the passage of federal legislation that raises the bar of protection and safety in schools for all students. We will not rest until all students are safe in the schoolhouse.
We need a powerful and escalating collective voice to insist that Congress pass federal legislation without delay.
Senator Tom Harkin (Chair, Health Education Labor and Pension Committee) introduced S. 2020 the Keeping All Students Safe Act to protect students from dangerous restraint and seclusion on December 16, 2011. A bipartisan hearing “Beyond Seclusion and Restraint: Creating Positive Learning Environments for All Students” cosponsored by Senators Harkin and Enzi is scheduled for June 28th
Representative George Miller (Ranking Member, House Education and Workforce Committee) introduced H.R. 1381, the Keeping All Students Safe Act in the House on April 6, 2011. The bill currently has bipartisan support, thanks to Rep. Gregg Harper, with 42 cosponsors.
We sincerely thank Rep. Miller and Senator Harkin for their staunch and continued leadership on this critical issue.

The Keeping All Students Safe Act will promote a shift toward preventing problematic behavior through the use of de-escalation techniques, conflict management and evidence-based positive behavioral interventions and supports. This shift will help school personnel understand the needs of their students and safely address the source of challenging behaviors – a better result for everyone in the classroom. In many cases, the use of positive supports and interventions greatly diminishes and even eliminates the need to use restraint and seclusion. For example, the Centennial School in Pennsylvania, which serves children in 35 school districts, has cut the use of restraint and seclusion from well over 1,000 occurrences per year to less than ten through the use of positive supports. Reports and studies have also shown that students and staff are safer when positive interventions and supports, rather than restraint and seclusion, are used in schools. Worker’s Compensation costs even decrease significantly.
Other critical provisions of the bill include:

• Ensure the safety of all students and school personnel.
• Promote positive school culture and climate.
• Protect students from being locked in rooms or spaces from which they cannot exit.
• Promote of effective intervention and prevention practices, emphasize training, de-escalation, conflict management, and evidence-based practices shown to be effective in prevention.
• Restrict physical restraint to emergencies posing a serious threat of physical harm to self or others.
• Prohibit use of these dangerous practices to punish children, coerce compliance, for behavioral infractions, or as a substitute for positive behavioral support or proper educational programming.
• Prohibit the use when less restrictive measures would be effective in stopping the threat of harm.
• Require that the imposition end when the emergency ends.
• Ban restraints that are life threatening (including those that interfere with breathing), mechanical and chemical restraints, aversives that threaten health or safety, and restraints that interfere with the ability to communicate or which would harm a child.
• Require that parental notification occur within 24 hours and require staff and family to debrief so as to prevent use in the future.
• Require that states collect data, make it available to members of the public, and use the data to minimize further use.
• Protect teachers, staff, and parents from retaliation when they report violations of the law.
• Prohibit including restraint as a planned intervention in Individual Educational Programs or other individualized planning documents. (see COPAA Document on the critical importance of this provision here).
• Preserve existing rights under state and federal law and regulation.

Existing laws alone have not protected students against such abuse and injury, though many do offer important protections. Creating a national floor of protection will ensure that children are protected in every state.
Join us today in urging your elected officials to co-sponsor and pass H.R. 1381 and S. 2020. Email your two Senators and Congressional Representative and ask them to COSPONSOR and pass the Keeping All Students Safe Act. Ask your friends, family members, fellow advocates, and colleagues to do the same. 

HOW TO CONTACT CONGRESS
Visit www.senate.gov to find out the name of your US Senators and www.house.gov to find your Representative.
Dial the Capitol Switchboard at 202-224-3121 and ask for the office of your Senators and Representative
Identify yourself as a constituent and the organization that you represent (if any)
Give them your message, then pass this alert along to others!
Message: “I am calling to ask Senator/Representative _________ to move legislation to limit restraint and end the use of seclusion in schools. Restraint should only be used in emergencies threatening the physical safety of the student or others. The Keeping All Students Safe Act will create a baseline of protections to ensure the safety of all students and school personnel. I urge Sen./Rep.__________ to address this national problem and move the Keeping All Students Safe Act now.”
Please, send the email or call this week. Our children’s lives depend on it

A Legal Struggle for Coverage in New Jersey

The Newark Star-Ledger reports on a New Jersey family that tried to get its insurer to pay for ABA. Despite a state supreme court ruling and a statutory mandate, it was a struggle:

The family spent their savings and mortgaged the house to pay for years of behavioral therapy for their son Matthew, 7, after he was diagnosed with a form of autism as a toddler. And then they shelled out thousands in legal fees in a 3½-year battle to convince the state health benefits plan and insurer Horizon Blue Cross Blue Shield of New Jersey to cover it.

The fight ended last month when the insurer mailed a check for $97,088.45. But the couple says the experience shows how hard it is to get coverage for children with autism and other developmental disabilities — despite the court ruling and a 2010 law mandating it for all state-run and state-licensed insurers. "The problem with insurance companies is they make it so challenging to file claims," said Meredith Blitz-Goldstein, an oral surgeon who works for the state-run New Jersey Dental School. "A lot of parents don’t know how to get through the system, and I think that’s how Horizon likes it."

TRICARE Hearing

Previous posts have discussed TRICARE. On Thursday, the Personnel Subcommittee of the Senate Armed Services Committee held a hearing.Autism Speaks reports:

WASHINGTON, DC -- A Senate Armed Services subcommittee sharply questioned representatives from the Department of Defense (DoD) today on why they offer limited autism insurance benefits to military families, particularly in light of the federal government's decision to begin coverage for the nation's 8 million civilian employees, retirees and dependents. Autism Speaks Chief Science Officer Geraldine Dawson (left, with Sen. Kirsten Gillibrand) testified at the Subcommittee on Personnel that the DoD's exclusion of Applied Behavior Analysis (ABA) from basic TRICARE coverage on the basis that it was educational rather than medical relied on outdated and incomplete research. She said what limited ABA coverage the DoD does offer is restricted to active duty members and falls short in providing a sufficient level of coverage.

Links to prepared statements and the archived webcast are here.

Training for Los Angeles Educators

A press release from the Center for Autism and Related Disorders:

The Los Angeles Unified School District (LAUSD), the second largest school district in the nation, has selected the Center for Autism and Related Disorders’ CARD eLearning™ program to provide the district with intense training in evidence-based principles of behavioral health treatment for individuals with autism spectrum disorders (ASD). Over 6,000 LAUSD teachers and support staff will participate in the training.

The Center for Autism and Related Disorders, Inc. (CARD) is the world’s largest provider of state-of-the-art, early intensive behavioral intervention for individuals with autism spectrum disorders. In addition to providing treatment for thousands of children worldwide, CARD develops and utilizes technology to increase access to training for professionals who work with individuals who have been diagnosed with ASD. The CARD eLearning™ program (http://www.cardelearning.com) trains educators and other professionals in the principles of applied behavior analysis (ABA), which has been empirically proven to be the most effective treatment for individuals with ASD and is recommended by the American Academy of Pediatrics and the U.S. Surgeon General.

CARD eLearning™ is a 20-hour online training course designed to facilitate effective intervention for children with autism spectrum disorders by equipping users with foundational knowledge in ABA. The training consists of nine video-based training modules which feature online note taking, quizzes, a final exam, and a certificate of course completion.

Autism Funding in Missouri

KOLR in Springfield, Missouri, reports:

Today Governor Jay Nixon signed a $2.4 billion mental health appropriations bill in Springfield.  The governor's signature made it law at the Burrell Autism Center.  Only a fraction of the it will fund autism but he wanted to highlight his commitment to families with autism.  House Bill 2010 will provide more than $10 million for autism programs and projects.  There are still a lot of questions about what causes autism but if caught early therapy can help a lot.  In Missouri more than 2,500 families are affected by autism.  People sometimes can't get treatment because it costs so much.  The funding will remain at 2012 levels for each individual but an additional 375 kids will be helped.  The bill will go into effect on July 1.  In 2010 Governor Nixon signed a law that requires insurance companies to provide coverage for autistic kids in Missouri until they're 18.

See here for 2010 blog post on the enactment of the mandate

Charters and Students with Disabilities

Previous posts have discussed the role of charter schools in educating ASD students. The Government Accountability Office reports:

Charter schools enrolled a lower percentage of students with disabilities than traditional public schools, but little is known about the factors contributing to these differences. In school year 2009-2010, which was the most recent data available at the time of our review, approximately 11 percent of students enrolled in traditional public schools were students with disabilities compared to about 8 percent of students enrolled in charter schools. GAO also found that, relative to traditional public schools, the proportion of charter schools that enrolled high percentages of students with disabilities was lower overall. Specifically, students with disabilities represented 8 to 12 percent of all students at 23 percent of charter schools compared to 34 percent of traditional public schools. However, when compared to traditional public schools, a higher percentage of charter schools enrolled more than 20 percent of students with disabilities. Several factors may help explain why enrollment levels of students with disabilities in charter schools and traditional public schools differ, but the information is anecdotal. For example, charter schools are schools of choice, so enrollment levels may differ because fewer parents of students with disabilities choose to enroll their children in charter schools. In addition, some charter schools may be discouraging students with disabilities from enrolling. Further, in certain instances, traditional public school districts play a role in the placement of students with disabilities in charter schools. In these instances, while charter schools participate in the placement process, they do not always make the final placement decisions for students with disabilities. Finally, charter schools’ resources may be constrained, making it difficult to meet the needs of students with more severe disabilities.

Leadership Change at Autism Speaks

Sullivan at Left Brain/Right Brain is reporting that Mark Roithmayr has suddenly resigned as the president of Autism Speaks. His successor is Liz Feld, previously the group's executive vice president for strategic communications. Sullivan notes that Roithmayr was a proponent of the concept of an autism epidemic. The official release:

NEW YORK, NY (June 19, 2012) -- Autism Speaks, the world’s leading autism science and advocacy organization, today announced that Liz Feld, a respected executive with a strong track record of accomplishment in both the public and private sectors, has been named the organization’s new president. The appointment, which is effective immediately, was announced by Autism Speaks Co-founders Bob and Suzanne Wright. Mark Roithmayr has resigned as president after serving in the position since 2005.  ... Before joining Autism Speaks, Feld served for four years as the mayor of the Village of Larchmont in Westchester County, NY. She was elected mayor on a fiscal reform platform in 2006, after having served as deputy mayor (2003-2006) and trustee (2002-2006). As mayor, Feld secured more than $4 million in federal, state and local grants to support local programs, and restored the village surplus to $2.3 million, resulting in the village’s first AAA credit rating from Moody’s Investor Services.  Feld has devoted much of her career to public policy and strategic communications. She served in the White House from 1984-1987, as public affairs specialist in the White House Office of Management and Budget and press officer for Vice President George H.W. Bush during the Reagan administration. She was director of news information at ABC News and senior vice president for communications for Nickelodeon.  Prior to that, she worked at Robinson, Lake, Lerer & Montgomery, a strategic communications and public affairs firm. In September 1999, Feld helped launch the Million Mom March, a national grass-roots organization established to promote sensible gun safety legislation. She is a member of Mayors Against Illegal Guns, co-founded by New York Mayor Michael Bloomberg and Boston Mayor Thomas Menino. Feld also serves as a board member of New Yorkers for Growth, a leading New York State fiscal reform group. Feld holds a B.A. in Government and Political Theory from Georgetown University.

Implementing the California Mandate

Previous posts have discussed the California insurance mandate. Laura Shumaker writes at the San Francisco Chronicle:

Insurance companies have perfected some quietly time-tested methods. They know that if virtually 100% of their subscribers whose children receive an ASD diagnosis come to them requesting therapy. if they refuse them all, only about 10% will come back and challenge that refusal. The rest will go away. Be the 10%! You will navigate the refusals, the requests for further information, the redirection and the misdirection. You will not be alone as you make this journey. For specific information on how to begin the process of requesting insurance coverage for autism therapy (and a peek at the obstacles you are likely to encounter) attend an upcoming insurance lecture in your area or visit Check out www.autismhealthinsurance.org or www.autismvotes.org better yet talk to other fellow parents., join an insurance users group Kaiser Members & All other Health Plans One caveat – this law does not apply to health care plans that do not deliver mental health or behavioral health services to enrollees, or to participants in the Medi-Cal program. While the Healthy Families Program and California Public Employees Retirement System (CalPERS) are explicitly excluded from the law, they are not exempt from the existing Mental Health Parity law (AB 88). According to a recently published survey by the Autism Society of California, when families were asked,  “Do you plan on accessing benefits through the new autism health care law? “ almost half (44%) answered, “What health care law?”

ER

A previous post told the story of one ASD person's experience in the emergency room. The Pittsburgh Post-Gazette reports:

"Educational initiatives that make general physicians aware of the complexities of diagnosis and management of patients with an ASD are needed," the doctors write in Post Graduate Medical Journal. "The rising prevalence of patients with an ASD makes it imperative that the general healthcare community becomes aware of the multidimensional nature of the ASD spectrum of illness." The article, based on a survey of existing literature on how general physicians may handle patients with autism, provides common-sense tips on their care. Most important, said lead author Arvind Venkat of Allegheny General, is "to listen to the caregiver and listen to the patient to the extent possible. They're very unique in how they interact. To take a knee-jerk approach and say this is how [doctors] react to a patient ... this is not the way to go. You really need to take time to talk to the caregiver to speak with [him about] how can we treat the patient in a way that's productive and not cause the conflict and stresses that we talked about."

An Autism Father's Day

An earlier post described an autism dad from St. Augustine, Florida on an awareness crusade. On Father's Day, The St. Augustine Record follows up:

Blevins has become a champion for his sons’ cause. He and his wife founded the Project Autism of St. Johns organization in St. Augustine to provide a support network for residents diagnosed with an autism spectrum disorder and their families as well as to promote awareness. In February, Blevins began perhaps the most tangible evidence of his commitment to his sons’ conditions — he walked from St. Augustine to Washington, D.C. It took him 39 days and countless blisters and swollen knees and ankles to cover about 800 miles. Along the way he spoke to as many residents, newspapers and organizations as possible to try to raise awareness for autism and the benefits of early intervention. His Facebook page, Walking with Troy, gained about 2,400 followers throughout the trip. Early intervention is something Blevins believes is incredibly important for children with autism. The earlier the diagnosis, the earlier they can begin treatment and therapy that could improve their quality of life. A low-functioning child, Blevins said, could cost his parents $9 million in care, treatment and education a lifetime. If that child improves to become moderately functioning, he said, the cost drops down to about $3 million. For high-functioning children, the cost is about $1 million.

Utah Exodus

The Salt Lake City Tribune reports on a Utah family that moved out of state for services.

In 2008 in a decision that felt bitingly unfair, the Eliasons moved to Colorado, leaving friends and family behind. But for April alone this year, their insurance company wrote a check for $3,534 for Isaac’s treatment that month. It included speech and occupational therapy along with Applied Behavioral Analysis (ABA), increasingly recognized by states and other levels of government as effective therapy for autistic children. The Eliasons are part of what appears to be a small but growing number of Utah families with autistic children either leaving the state or seriously considering a move. ...

"I’m glad [the mandate] is attracting people to our state," said Bridget Cessar, interim executive director of the Autism Society of Colorado. "But I would also say that it’s not the only thing that a family should be looking at when they move here."

Mental Health Parity Case

A release from Autism Speaks:

Autism Speaks hailed a federal court ruling that a Washington health plan’s refusal to cover Applied Behavior Analysis (ABA), speech, occupational, physical and other neurodevelopmental therapies after age six violated the state’s Mental Health Parity Act. The therapies are commonly used to treat the developmentally disabled, including persons with autism.

Ruling in Seattle on Z.D. v. Group Health Cooperative, U.S. District Court Judge Robert Lasnik found that treatments for developmental disabilities are covered under Washington state’s mental Health Parity Act and issued an immediate injunction. The case was brought as a class action on behalf of “Z.D.,” a 12-year-old with developmental disabilities who had received speech therapy from Group Health until she was cut off at age seven.

“This is wonderful news for children with autism and other disabilities in Washington state who need critical therapies, such as ABA, to improve their quality of life and achieve greater independence,” said Lorri Unumb, Esq., Autism Speaks vice president for state government affairs. “The plaintiff’s attorneys, Eleanor Hamburger and Rick Spoonemore of Sirianni Youtz Spoonemore, deserve great credit for prevailing in this case which could have wider implications nationally.”

In his ruling, Lasnik said, ““the Court ORDERS Defendants to cease their application of any treatment limitations [for mental health services] that are not generally imposed on coverage of medical and surgical services. The Court will not look kindly on failures to immediately implement its directive.”

The class action against Group Health was one of six brought against Washington insurers over their exclusion of neurodevelopmental and behavioral therapies. Lawsuits are pending against Premera Blue Cross, Regence Blue Shield, and the public employees’ coverage, the Uniform Medical Plan.

 

“

"Highly Qualified"

Michelle Diament writes at Disability Scoop:

It doesn’t take much to be deemed a “highly qualified” teacher under federal law. Now, disability advocates are asking Congress to raise the bar.

Currently, teachers who are still working on their certification through an alternative training program like Teach for America are able to gain the “highly qualified” label.

The U.S. Senate is considering renewing a provision allowing these classroom rookies to retain the highly qualified designation but advocates from several national disability groups are asking them not to.

In a letter to leaders of the Senate Appropriations Committee this week, advocates said the practice is having a disproportionately negative impact on students with disabilities.

Education Week offers more background:

In essence, the provision allows teachers still working on their certification to be considered "highly qualified"—a designation created by 2001's No Child Left Behind law. The law says teachers must already be certified to qualify, but Education Department regulations created about the law allowed for teachers in alternative routes to be considered highly qualified, even if they were still working on their certification. For example, people in the classroom as part of the Teach for America training program would fall into this category.

An appeals judge sided with a group of parents and advocacy groups in a California lawsuit against the federal Education Department over the alternate path to being a highly qualified teacher. The court found that the Bush administration's 2002 regulation on highly qualified teachers improperly broadened the No Child Left Behind statute by allowing alternative-route teachers to circumvent the definition. The statute requires highly qualified teachers to hold full certification, while the regulations permits teachers in alternative routes to be considered HQ, even without certification, if they are making progress in their programs.

But a Senate provision tucked into a previous budget bill rendered the court ruling moot, legitimizing the highly qualified label for teachers on a path to certification.

The National Center on Learning Disabilities—which is urging calls to senators to ensure the provision is killed—notes that students with disabilities, English-language learners, poor students, and students of color are the ones most likely to be taught by uncertified teachers.

Alaska Mandate Becomes Law

A press release from Alaska State Senator Johnny Ellis:

Senate Bill 74, which requires health insurance policies to cover treatment of autism spectrum disorders (ASDs), has been transmitted by the Governor back to the Legislature. The new law requires insurance coverage for ASDs including medically necessary treatments such as speech and language therapies, occupational and physical therapies, and behavioral interventions. Governor Sean Parnell chose to return the bill to the Legislature without his signature, which under Alaska law will result in enactment. A 20-day period, not including Sundays, for the Governor to sign expires June 27.

"I first introduced this legislation three years ago after meeting with a mother of a child with autism," said Rep. Pete Petersen (D-Anchorage), prime sponsor of the House version of this bill. "When I learned that children were being denied coverage for scientifically proven treatment that could help them lead a normal life, I knew we had to take action."

Senate Bill 74, approved by the Senate in February, was passed by the House on the last day of session after a few minor changes. Families of those affected by autism packed committee rooms and the hallways of the Capitol Building as Senate Bill 74 made its way through the process. Dozens of parents, experts and others testified in support of the legislation.

"Today, the families of autistic children in Alaska can celebrate a bill that will not only help children, I believe it will help save marriages and families," said Sen. Johnny Ellis (D-Anchorage), the prime sponsor of SB 74. "Children who receive these medical treatments have a shot at staying home and out of costly institutions where they would be destined to a life of constant and intensive care."

The Alaska Dispatch adds some detail:

The mandate, Parnell said, "will likely diminish the educational costs, medical costs, and increased lifelong productivity of many individuals, including family members, all interests beneficial to the State," Parnell wrote in a letter attached to the bill.

Although it doesn't need his signature to become law, Parnell didn't sign it because he still has concerns over the cost, his spokesperson Sharon Leighow said.

During testimony, insurance companies said premium costs for those who buy private insurance could be raised as much as 3 percent as a result of the mandate. A peer reviewed study, however, said that it would be much lower than that.

Autism and Health Care Costs

UPI reports:

Children with autism spectrum disorders have higher costs for parents and insurance providers than children with diabetes, U.S. researchers say.

Nancy Cheak-Zamora, assistant professor of health sciences in the University of Missouri's School of Health Professions, compared costs and types of services for children with autism spectrum disorders to costs and services for children with other conditions like asthma or diabetes.

The study, published in Research in Autism Spectrum Disorders, found children with autism spectrum disorders paid more for healthcare and used more services, yet had less access to specialized care, than children with other conditions, the study said.

"Across the board, children with autism spectrum disorders used more healthcare services, including in-patient stays in the hospital and required more medications," Cheak-Zamora said in a statement. "Children with autism spectrum disorders need coordinated healthcare, better access to services and more affordable care. Insurance companies should develop policies that will cover the treatments children with autism spectrum disorders need."

ABLE Act Action Alert

Previous posts have described the ABLE Act.  Autism Speaks is issuing an action alert:

Over 160 House members and 21 Senators from both political parties have signed on as co-sponsors of ABLE, a bill that would allow families raising children with disabilities to save tax-free for their future needs. Why have your U.S. Representative and at least one of your Senators yet to join them? Send them an email asking that they sign on to the Achieving a Better Life Experience (ABLE) Act, HR. 3423 in the House and S.1872 in the Senate. We'll let you know if your Member of Congress co-sponsored an earlier version of the bill in 2009, or is a member of the Congressional Autism Caucus.The momentum continues to build behind this strongly bi-partisan issue! Let's get this done in 2012!

Here is How YOU Can Help:

1) SEND YOUR REPRESENTATIVE AND U.S. SENATOR(S) AN EMAILYou can email them here. It takes just a few minutes to sign up and send it. We have the basic letter already drafted for you, but take a minute to add one paragraph to make it personal about your family and the person you love with autism. 2) SPREAD THE WORD! Ask your friends and family to help you by sending in a quick email of their own. You can send an email to them after you take action, and also post something like this on your Facebook page: "Please help me contact our Members of Congress to ask that they support the ABLE Act and vote it out of Congress. This bill will allow me to save tax-free for the future needs of (CHILD's NAME) in the same way parents save for college. It takes 5 minutes and will help our family. Write DONE so I can thank you!"  Link to: www.autismvotes.org/ABLEJune

The ABLE Act, introduced with strong bi-partisan support, would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.
You can read more about the ABLE Act here.
Ask your friends and family to help you pass this important legislation. Be sure to email TODAY!
Shelley HendrixDirector of Grassroots DevelopmentAutism Speaks

TRICARE Legislation Update

The Navy Times reports:

The House moved May 18 to expand coverage for autism services under Tricare, setting the stage for debate later this year with the Senate in drafting a final version of the defense bill.
An amendment to the House version of the 2013 defense authorization bill, sponsored by Rep. John Larson, D-Conn., would remove a $36,000 annual cap for autism therapy set under Tricare’s Extended Health Care Option program.
...


A similar amendment sponsored by Sen. Kirsten Gillibrand, D-N.Y., failed to pass the Senate Armed Services Committee in late May, which means the House and Senate will discuss the issue when negotiators meet to write a final compromise defense bill.

To offset the estimated $30 million cost of broader coverage, the House trimmed an equal amount from the Army’s Research, Development, Test and Evaluation budget: $9 million from endurance unmanned aerial vehicles and $21 million from the Aerostat Joint Program Office, a move that further reduced that office’s funding to $40 million below the Pentagon’s original $190 million budget request.

Autism advocates say Larson’s amendment is a “small victory” in the effort to broaden services.

Marine wife Karen Driscoll, a government relations specialist with the advocacy group Autism Speaks, said lifting coverage caps would benefit active-duty families struggling to pay for extended treatment and help families of troops injured in combat.

The Freezer Failure

AP reports:

A freezer malfunctioned at a Harvard-affiliated hospital that oversees the world's largest collection of autistic brain samples, damaging a third of the scientifically precious specimens and casting doubt on whether they can be used in research.

The director of the Harvard Brain Tissue Resource Center said the loss was "devastating," particularly in light of the increasing demand for brain samples among scientists searching for the cause of autism and potential treatments.

"Over the last 10 years, the autism tissue program has been working very hard to get the autism community to understand the importance of brain donation," Dr. Francine Benes said. Now many of those samples have been compromised.

Apparently misunderstanding the last line, the headline writer for WLS in Chicago suggested that the problem is even worse than it is:







The reference to "10 years" is about the development of brain donations, not the extent to which this failure will set back research.

See here for another example of media inaccuracy.

Autism As Rhetoric

In Disability Studies Quarterly, Alicia Broderick has an article, "Autism As Rhetoric: Exploring Watershed Rhetorical Moments In Applied Behavior Analysis Discourse."  The abstract:

This manuscript offers an analysis of what I argue are three watershed moments in contemporary autism and applied behavior analysis (ABA) rhetoric (1987-2010). The first of these moments is the 1987 publication of O. I. Lovaas's treatment effect study, which introduced the rhetoric of recovery from autism and linked this rhetorical construct with a particular intervention methodology—ABA. The second moment consists in the 1993 publication of Catherine Maurice's autobiographical account of employing Lovaas-style ABA intervention programs with her two young children—an account that both popularizes Lovaas's rhetorical construct of recovery and reiterates its linking with ABA, but more significantly, that also introduces to popular autism discourse the rhetoric of science as a means of constituting the legitimacy of ABA. The third watershed moment in contemporary autism rhetoric is the 2005 establishment of the organization Autism Speaks, which has effectively changed the face of autism rhetoric through its com prehensive deployment of corporate-style rhetorical and political strategy.

Concern About DSM-5

A number of posts have dealt with upcoming changes in DSM-5. Amanda Gray writes at The South Bend Tribune:

Those proposed changes could have large ramifications for local families, said Joshua Diehl, the University of Notre Dame psychology professor who eventually told Pierce with certainty that Wesley had autism.

"We've seen it coming since a couple of years back," Diehl said of the changes. "We began to see it as more research came out about the autism spectrum."
...

Some experts believe up to 40 percent of those currently considered autistic will be affected and might lose their diagnoses, which could affect insurance coverage and other services, according to The Associated Press.

Diehl said many of those diagnosed with specific types of autism would lose specialized services and environments they depend on.

"A lot of people embraced the Asperger's diagnosis culture," Diehl said. "They came out of it as bigger than the diagnosis itself. Autism carries a little more of a stigma with it -- Asperger's is a less stigmatizing diagnosis."

Another potential problem with the proposed changes is the damage they could do to the reputation of the psychology field as a whole, according to Diehl.

"In some ways, there is a danger to undermining the psychology profession," he said. "A lot of families have been struggling for years to find a diagnosis."

Understandably, the definitions needed to be upgraded, according to Diehl.

"The idea is that we created the autism spectrum, and we have a catch-all category (PDD-NOS) that wasn't exactly autism," he said. "Too many people were put in there -- it sort of became autism.

ASD in the ER

Previous posts have discussed interaction between first responders such as police officers and firefighters. ER doctors and nurses face challenges, too. At Autism After 16, Michele Langlo writes of taking her adult son to the emergency room:

While the staff on the floor had been informed that Cody was autistic, they really were not sure what an overnight stay would entail for him or them. We explained to them that either Bill or I would need to be there with him round the clock for communication purposes.

At first, they were asking Cody questions in the same way they would ask any neurotypical person. They quickly learned that got them nowhere and they needed help.

But there was the HIPPA law to deal with as well. Something hospitals take this very seriously. Cody is legally an adult, so how was this going to work?

Bill and I both carry photocopies of our Legal Guardianship document from the court with us at all times. Bill pulled his out of his wallet and handed it to the nurse. I don’t think I’ve ever seen anyone quite as relieved as she was at that moment. Now we could begin to make some headway toward my son’s care.
...
Now I think about what kind of problems we could have faced had we not been prepared. What would have happened if we had not had that document in our physical possession at that moment when questions of legalities surfaced? Would the doctors and nurses have been legally bound to go strictly on what procedures Cody gave permission for? What if he said no? Would they have given up when they could not get legitimate answers to their questions? I shudder to imagine the horror we could have faced, especially if Cody had not responded to treatment quickly.

More on the OPM Decision

Autism Speaks comments on an important decision by the US Office of Personnel Management:

So what changed? OPM issued new guidance to the health plans that participate in the FEHB Program for policies they will renew or issue in 2013. The guidance, issued in mid-April, but not publicized until May 30, reads:

“The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

The implications of this determination are huge. Not only will the eight million federal beneficiaries finally have the opportunity to access coverage for ABA, but many other health insurance plans could end up following suit. The argument that ABA is purely educational has been at the core of the insurance industry’s opposition to providing coverage for behavioral health treatments for individuals with autism. That argument has now suffered a significant setback.

Ripoff Update

An earlier post described a service dog scam.  The Chicago Tribune brings us up to date:

Families who had been holding out hope that they would receive a service dog this spring to help a child with autism have all but given up on a program they now fear was mismanaged from the start.

In February the Tribune reported on complaints from families across the nation about a central Illinois dog trainer who told them they had won service dogs for their children, only to cut off communications when they started asking questions about her credentials and operations.

The dog training operation, called Animals for Autism, was founded by Lea Kaydus, who with the families' help won a $50,000 grant through the Pepsi Refresh Project to train and place the dogs. Kaydus had said the dogs would join their families by spring 2012.

At the time of the Tribune's story, Kaydus had surfaced after a long silence with a January email to families. Since then, the parents say, they've heard nothing from Kaydus. They also say they have received no solid information from Global Giving, the company hired to manage the grant and project for Pepsi.

Also see video here.

Insurance Action in Delaware and Oregon

WBOC reports:

A bill introduced in the Delaware Senate on Tuesday could be the financial help many parents with children with autism are seeking.

Senate Bill 22 would require insurance companies to cover treatments for autism for kids under 21 in Delaware.

Currently, many parents have to pay out of pocket for services their children because their insurance won't cover them. Nancy Carnwright's 11-year-old son Dylan has autism and she said the cost has been very high for her family.

"We had to pay out of pocket thousands of dollars for services that really helped him," she said. "He's 11 now and we can see the fruits of our effort. I wish this wouldn't go this way for other families."

Autism Speaks reports:

Autism Speaks, the nation's leading autism science and advocacy organization, today applauded the City of Portland’s decision to extend autism insurance benefits to city employees, including coverage for Applied Behavior Analysis (ABA), paving the way for wider reform to be enacted at the state level in Oregon in 2013.

Through the efforts of City Commissioners Amanda Fritz and Dan Saltzman, Portland will start covering autism treatment, including ABA, for city employees and dependents on July 1 with no financial, age or visit caps. In addition, existing limitations on physical, occupational, speech and audiological therapy necessary to restore or improve lost function caused by autism will be removed. The benefits apply to employees covered under the city’s self-funded health plan administered by ODS; employees covered under the city’s Kaiser plan will receive assistance to appeal and resolve denials of ABA therapy.

Emken to Face Feinstein

The Sacramento Bee reports that Elizabeth Emken will be on the California ballot in November:

Republican Elizabeth Emken secured a runoff spot in Tuesday's U.S. Senate primary, winning the chance to go head to head with Democratic Sen. Dianne Feinstein in November.

The Danville Republican was one of 23 candidates challenging the longtime Democratic senator on the primary ballot.

Emken led the pack with 12 percent of the vote in the "top two primary" free-for-all that allowed voters to choose among candidates of all political leanings.
...
Emken, a longtime advocate for children with autism, edged out a field of mostly unknown and underfunded Republican rivals to win the state party's endorsement ahead of the primary.
Republican businessman Dan Hughes, a first-time candidate, came in third with 6 percent of the vote....

Emken, whose 19-year-old adult son is autistic, has spent the last 15 years working as an advocate focused on the condition.

Her recent work as the vice president for government relations for the national nonprofit Autism Speaks sparked attacks from GOP rivals, who said the nonprofit's work to shape the federal health care overhaul conflicted with Emken's stated opposition to the law.

Read more here: http://www.sacbee.com/2012/06/05/4541612/elizabeth-emken-to-challenge-dianne.html#storylink=cpy

An interview with Emken:

 

An Inaccurate Article on Autism

At Investor's Business Daily, Paul Sperry writes about "autism hysteria."

In 1994, medical officials and the Clinton administration broadened the definition to include children who previously might have been thought of as odd.

Today milder conditions, such as speech impediments and extreme shyness, are covered in addition to severe autism under the new umbrella: Autism Spectrum Disorder.

Apparently, he is referring to DSM-IV, a product of the American Psychiatric Association, not the federal government.  On the one hand, it is true that the DSM-IV criteria expanded the number of people who would qualify for a diagnosis of autism.  On the other hand, the criteria make no mention of "shyness" or "speech impediments."  Rather, the manual refers to impairments in communication and social interaction, which are different. In any case, no single impairment is sufficient for a diagnosis.

Now more than half of autism cases fall under the mildest range of the spectrum, known as Asperger's disorder. These kids fidget. Or brood. Or they may pick their nose and eat only yellow foods. But they are high-functioning students who will be able to hold jobs as adults.

"More than half" seems to refer to the recent CDC study:

But it is preposterous to suggest that all those with PDD or Asperger's are "high-functioning students who will be able to hold jobs as adults."  Studies have shown that they have extremely high unemployment.  Many are in day services or not engaged in productive activity at all.

A growing body of scientific research has found that the rise in autism diagnoses is not due to a true increase in the incidence of the cognitive disorder, but rather to a widening of the definition and increased screening by schools and doctors, who are rushing to diagnose and medicate socially awkward or difficult kids.

Again, there is no real controversy as to whether the widening of the definition contributed to the apparent increase in prevalence.  But there is no consensus as to whether there has also been a true increase.  Indeed, there is serious research indicating that change in diagnostic criteria do not account for all of the increase.

As of December 2010, the latest Social Security Administration data show, almost 100,000 children were on federal disability for autism. Parents filed 23,203 new applications in 2010, quadrupling 2000's total of 5,430.

These figures come from a Government Accountability Office report on Supplemental Security Income, not federal disability insurance.  The report indicates that the increase comes from people who would have previously had the classification of intellectual disability (the old term was "mental retardation")

Between fiscal years 2000 and 2010, autism applications more than quadrupled from 5,430 to 23,203, and medical allowances increased similarly from 5,050 to 20,319 (see fig. 6). As of December 2010, about 95,000 (11 percent) children with mental impairments were receiving SSI benefits due to autism. DDS examiners have generally found the vast majority of those children applying for SSI on the basis of autism medically eligible for benefits. SSA officials attributed the increase in the number of autism applications and medical allowances over the years to greater incidence of autism among children and explained that some children who may have previously been diagnosed as intellectually disabled are instead being diagnosed as autistic. According to one study SSA cited, the prevalence of autism in children has increased from 0.6 per 1,000 live births in 1994 to 3.1 per 1,000 live births in 2003, while the prevalence of intellectual disability decreased by 2.8 per 1,000 live births in 2003.

In other words, a lot of these kids would have been receiving services anyway -- just the wrong kind of services.

Aging and Disability Resource Centers

On Thursday, HHS issued this release:

Health and Human Services (HHS) Secretary Kathleen Sebelius today announced a new $25 million funding opportunity made possible by the Affordable Care Act to help states strengthen and expand their ability to help seniors and people with disabilities access home and community-based long-term services and supports. Over the next one to three years, funding will support Aging and Disability Resource Centers (ADRCs) in nearly every state.

Each year, more seniors, people with disabilities and their families are confronted with often challenging decisions about how to obtain the long-term services and supports they need. Choices range from care in their home to care in a nursing home; social supports for daily living to home health care; transportation to physical therapy to name a few. ADRCs will make it easier for people to learn about and access the services that are available in their communities and best meet their needs.

...
The initiative, known as the Aging and Disability Resource Center Program, is established through a partnership between the Administration for Community Living (ACL), the Centers for Medicare & Medicaid Services (CMS), and the Department of Veterans Affairs’ Veterans Health Administration (VHA).

...
The ADRC Program will help state agencies administer and better coordinate state and federal long-term service and support programs for older adults, people with disabilities, and veterans with disabilities. Approximately eight states will be competitively selected to accelerate the development over a three-year period of the creation of single entry point models, which provides one-on-one options counseling to streamline the intake and eligibility determination processes for consumers accessing long-term service and support programs.

Kathy Greenlee, ACL’s administrator and assistant secretary for aging, said, “Options counseling is an important tool that can provide custom-tailored advice about all the services available in a person’s community, reducing unnecessary time and energy spent searching for answers in a variety of places.”

“We want these programs to serve as high-performing ‘one-stop shop’ models across the country,” said CMS’ Acting Administrator Marilyn Tavenner.

In addition to accelerating activities in the eight states selected, funding will be provided by ACL to up to 40 states next year to support their current ADRC programs. This will help them develop a sustainable infrastructure that is critical to ensuring ongoing coordinated access to services.
...  

Last month, Secretary Sebelius announced the creation of the new ACL, bringing together key HHS offices dedicated to improving the lives of Americans with functional needs into one coordinated, stronger entity. This new agency, which acts as a key partner in today’s announcement, will work on increasing access to community supports and achieving full community participation for seniors and people with disabilities.

For more information on the Administration for Community Living visit: http://www.hhs.gov/acl/.
More information about Funding Opportunity Numbers HHS-2012-ACL-RO-1210 and HHS-2012-ACL-DR-1213may be found on:
ACL - http://www.hhs.gov/acl/
CMS - http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Balancing/Balancing-Incentive-Program.html

Teamsters and Autism

Autism Speaks reports:

Teamsters Local 25 president Sean O'Brien announced the beneficiaries of the 5th Annual Light Up The Night, A Gala for Autism, which was held in April in Boston. On May 24, at a reception in Medford, Mass., O'Brien presented a check for $200,000 to Autism Speaks president, Mark Roithmayr and president of the New England Chapter of Autism Speaks, Larry Cancro.

Honorary committee members attending included boxing legend "Irish" Micky Ward and Lisa Strout from the Massachusetts Film Office. Other non-profits attended and received donations, but Autism Speaks was honored with the majority of the funds raised.

"We are incredibly grateful to have the support of Teamsters Local 25," Roithmayr said. "Sean O'Brien has become a powerful voice and advocate for families living with autism. In addition to raising significant revenue, his leadership, passion and commitment have led to the passage of autism insurance reform legislation in Massachusetts and greater awareness in the community."

"This event gets better and better each year," Sean O'Brien said. "We have a lot of fun but at the end of the night it's all about raising money for autism. We're thrilled to be able to donate $240,000 to local autism charities."

A Protest Against the Rotenberg Center

WFXT in Boston reports:

Roughly 70 protesters braved the rain on Saturday to protest the Judge Rotenberg Center's use of painful electric shocks as treatment.

The Rotenberg Center is the only place in the country to use these shocks as aversive therapy.
The practice has been controversial for decades, but opposition to the shocks has been renewed ever since FOX Undercover first made public a video of a former student diagnosed with autism who was restrained and shocked for hours.

The mother of that student came from New York to be at the protest.

After her lawsuit against the center which was settled in April, Cheryl McCollins vowed to fight to end these shocks for all students.

The Boston Globe reports:

Administrators at the Judge Rotenberg Educational Center contend that their methods have merit and are uniquely effective with certain special-needs cases. In a statement from the school, some parents endorsed the school’s methods and said they dramatic positive effect.

“My son Andrew has spent 18 years severely injuring himself and others, sending over 40 people to the hospital with severe human bites and concussions,” Robin and Joe Pisano of Revere said in the statement. “Nine months ago we made the very difficult decision to petition the court to try the GED (skin shock treatments). It has been a miracle. ... There is no torture here.”

Louisa Goldberg, of Newton, said her son Andrew was assaultive and was heavily drugged and “restrained on the floor for hours” in other programs.

“It is my job as his mother to find a treatment that helps him to be safe, calmer, healthy, happy and educated,” Goldberg said in the statement. The Judge Rotenberg Center is the best program for him.”

The Economic Impact of Autism

Previous posts have dealt with the economic impact of autism on families and individuals. Laura McKenna writes at The Atlantic:

However, once the parent overcomes that grieving process, they have to endure a lifetime of smaller cuts. The therapy, which is so necessary for the child's success, is very expensive. Parents will fight insurance companies and school districts to cover the costs. Often, they are unsuccessful, and they must deplete family bank accounts. They face hostile school districts and community members who accuse the family of stealing their children's money. Families become drained both emotionally and financially.

Working on their children's behalf becomes a full-time job. One parent, often the mother, either stops working or works less hours, in order to manage the educational and therapy of the child. She must shuttle the child long distances to find the right services. She must navigate the health care bureaucracy. She must meet frequently with teachers and constantly negotiate with the school district to get the therapy that their children need.

In an article in USA Today, Ricardo Dolmetsch, an associate professor of neurobiology at Stanford University, says his son's autism diagnosis has changed both his personal and professional life.

This work was made more difficult, Dolmetsch says, by the fact that caring for a child with a disability is a full-time job. Although his wife, neurobiologist Asha Nigh, supports his research, such as through managing projects and writing grant proposals, she has put her own scientific career on hold in order to care for their son and his brother, age 7. In his opinion, Dolmetsch says, his wife has earned an honorary doctorate "in getting insurance coverage for stuff."

"The finances of autism are brutal," Dolmetsch says. "The amount of continuous care these kids need is a lot. ... The only thing that works at all are behavioral treatments," which, depending on the state and one's health plan, may not be covered by insurance, he says. "They're very intensive... and they're horrifyingly expensive."

Autism, Schools, and Contra Costa County

Theresa Harrington writes at The Contra Costa Times

Although the number of autistic students has grown dramatically in Contra Costa County, school districts don't receive adequate state and federal funding to pay for their mandated education, district officials say.

In Mt. Diablo district alone, the total annual cost of the special education programs is $37.7 million more than the district receives in state and federal funding, including about $4.8 million that is spent transporting students.

"(The students) typically have a myriad services, which include speech pathology, occupational therapy, behavioral services, counseling and social skills groups," said Mildred Browne, assistant superintendent for special education in the Mt. Diablo school district.

The number of students ages 0-22 with autism has nearly doubled in the past seven years, from 269 in 2005 to 540 today. This growth is mirrored at county and state levels.

In Contra Costa County, the number of autistic students grew from 926 in 2005 to 1,666 in 2010. California's numbers ballooned from 34,668 to 65,908 during that time.

In another story, Harrington writes:

Before 6-year-old Soren Considine began attending the autism preschool program at Valle Verde Elementary two years ago, he refused to color, write or sit still.

But within a week, the previously quiet 4-year-old began talking to his mother in the car on the way to school.

"The tears streamed down my face," said his mother, Eva Marie Considine. "We had started to converse about a single topic without random interruptions of repeated phrases that I didn't quite understand at the time. Soon, he started writing his ABCs and drawing and playing games with his sister more. He was ready for the next step -- kindergarten."

Now finishing up his kindergarten year, Soren is "mainstreamed" with other children in a general education classroom, where he recently worked alongside classmates cutting, coloring and gluing pictures onto a strip of paper to show the progression of "The Three Little Pigs" story.

... 

Nearby, his mother was meeting with Soren's former preschool teacher Ellen Terminello and Soren's new case manager Calla VanBuskirk. They will assist in Soren's transition and full inclusion into first grade in the school's autism magnet program.

"All my students are at or above grade level," Terminello said proudly. "They're very verbal. Their disability is social skills and pragmatic language. These children are actually a gift to a classroom. They have a lot of general knowledge.