CARA Update: Action Looms

Peggy Clifford writes at The Santa Monica Patch:

We have less than 30 days to convince Congress that it must pass the
Combating Autism Reauthorization Act, S. 1094.

$693 million of dedicated autism research funding and vital funding for the Autism Treatment Network (ATN) hangs in the balance.

California’s Autism Treatment Network Centers are in jeopardy of losing
federal funding. The centers not only provide treatment for thousands of
people with autism, they are striving to establish a standardized protocol for physicians who treat both children and adults with autism along with their comorbid medical conditions such as gastrointestinal and sleep problems.

Call Rep. Henry Waxman, one of the most influential members of Congress,
today and ask him to use his considerable clout to ensure that Congress passes the Combating Autism Reauthorization Act — HR 2005. His
phone number is (202) 225-3976

One in every 110 children is diagnosed with autism now. The bill is budget
neutral and its reauthorization is vital.

After you contact the Congressman, send an email to our action center, and
also spread the word on Facebook, ask all your friends to contact their own
members of Congress and ask them to support and cosponsor the Combating Autism Reauthorization Act of 2011 – HR 2005, as the funding for the California Autism Treatment Network Centers is in jeopardy if the bill is not renewed by September 30.

LINK TO: www.autismvotes.org/CARA-ATN.

To learn more about the Combating Autism Reauthorization Act, please visit our CARA Action Center. The next 30 days are critical. We also need your help in ensuring that Senators Barbara Boxer and Dianne Feinstein actively support the reauthorization.

Autism Votes is an initiative of Autism Speaks. Become an Autism Votes Advocate. For more information on Autism Votes, please visit www.autismvotes.org.

A Regulatory Problem in California

The Center for Autism and Related Disorders (CARD) has sent out an email about a proposed regulatory change in California:

The Department of Developmental Services (DDS) is attempting to implement new regulations that will negatively impact our ability to provide quality services to our clients. The proposed regulation gives DDS the ability to lower our reimbursement rates for therapy work and increases the experience requirement for our therapists. This means that in most cases we will not be able to afford to keep our current therapists on staff. Our Regional Center reimbursement rates are already very low and the planned 25% cut will make it financially impossible for us to hire, train and retain great therapists. Plus, most of our therapists come to CARD for their first clinical position and they do so because of our exceptional training program. However, if they don't apply to CARD with at least 6 months of previous experience, we won't be able to hire them. How are these bright people supposed to get experience if organizations like CARD can't hire them?

We need the current requirements to stand so that services are not disrupted or discontinued. The current Regional Center rates are already low. Please tell the DDS that forming a new position called Behavior Management Technician (Paraprofessional) is not a solution to the current crisis. Please take a few minutes to email the DDS and ask them to keep the existing requirements in place.

Send your comments by WEDNESDAY, AUGUST 31 to joellen.fletcher@dds.ca.gov AND staff@oal.ca.gov.

For more information, visit the following websites and read below:
Click here: http://www.dds.ca.gov/proposedregs/BehaviorManagement/NOPR.pdf
Click here: http://www.dds.ca.gov/proposedregs/BehaviorManagement/FindingStatement.pdf

(b) Effective September 6, 2011, the following service code shall be assigned to the following type of service: Behavior Management Technician (Paraprofessional) - Service Code 616. A regional center shall vendor a group practice, vendored pursuant to Section 54319, for the above service. The Behavior Management Technician (Paraprofessional) shall practice under the direct supervision of a certified Behavior Analyst or a Behavior Management Consultant who is vendored within the same group practice. The Behavior Management Technician (Paraprofessional) implements instructional and environmental modifications to produce socially significant improvements in the consumer's behavior through skill acquisition and the reduction of behavior. The Behavior Management Technician (Paraprofessional) shall meet the following requirements: (1) Has a High School Diploma or the equivalent, has completed 30 hours of competency-based training designed by a certified behavior analyst, and has six months experience working with persons with developmental disabilities; or

(2) Possesses an Associate's Degree in either a human, social, or educational services discipline, or a degree or certification related to behavior management, from an accredited community college or educational institution, and has six months experience working with persons with developmental disabilities.

(12) Behavior Management Technician (Paraprofessional) - Service Code 616 Regional centers shall contract for Behavior Management Technician (Paraprofessional) services at no more than 75% of the regional center's median hourly rate or the statewide median rate for Behavior Management Assistant - Service Code 615, whichever is lower.

A Federal Case

Sometimes, policies and judicial decisions regarding other issues may have implications for autism. (The Rowley case, which interpreted IDEA, involved a student with a hearing impairment.) The Los Angeles Times reports:

A Northern California woman's treatment for anorexia at a residential facility was medically necessary and must be covered by her healthcare plan, a federal appeals court has ruled in a case that could lead to more extensive benefits for those being treated for mental illnesses.

Jeanene Harlick's policy with Blue Shield of California specifically excluded coverage for residential care, the room and board expenses she incurred while at the Castlewood Treatment Center in Missouri for 10 months beginning in April 2006.

...

Harlick's attorney, Lisa Kantor of Northridge, said the ruling could have huge significance for those with eating disorders as well as emotional disturbances like Asperger syndrome and autism.

The ruling may not have immediate effect, though, because Blue Shield could petition the court for a full 11-judge rehearing of the case or ask the U.S. Supreme Court to review it.

Also note that the case is in federal court, so the impact could eventually reach beyond California.

The Causation Puzzle

Rob Scott writes at The Gloucester County Times in New Jersey:

Dr. Robert Schultz, director of the Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia (CHOP), says “at a population level” genetics is “unequivocally” the most important cause of autism. Researchers can infer this based on studies of identical twins: About 80 percent of the time, when one twin has it, so does the other.

But since it’s not 100 percent of the time, there has to be something else going on, some other cause.

“That means, for any given kid, we probably often don’t know why,” says Schultz. “We don’t know what we’re looking for. We don’t know what the genes are by and large. We’ve identified about 10-15 percent of the genetic cause ... So we’ve discovered the lowest-hanging fruit. But the most complicated and the vast majority we haven’t discovered yet.”

What makes autism so confounding is it’s a heterogeneous disorder, meaning on a case-by-case basis there can be multiple causes, unlike Down syndrome, which is caused by a single genetic anomaly — the presence of an extra chromosome.

With autism, it could be the genes, the environment, or genes and environment conspiring together.

But the medical community is as unclear on what those environmental circumstances may be — neurotoxicants that damage the nervous system or materials that impinge directly upon DNA — as they are on the genes.

The medical community’s focus currently tilts more heavily toward gene study than environmental factors, in part because identifying the genes that cause autism is thought to be easier. There are roughly 50,000 known neurotoxicants — lead, for example — versus about 25,000 genes in the human body, Schultz says.

“So we’ve got twice as many influences. And those exposures could happen once. You could be exposed to something terrible when you’re 7 months old and you could have it around in your body for a week or a month,” he says. “Now you’re 17 and you’re seeing me. How am I going to know about that? So everyone says, ‘Let’s study the genes.’ There’s fewer of them. They’re always with you.” [emphasis added]

If science can discover the genes causing autism, they can then study how the environment affects those genes. Epigenetics is a field of study that examines how genes express themselves and the outside elements that cause those expressions to be altered. Research in this area could help shed light on how environmental influences may contribute to autism.

Schultz explains: “Basically genes turn on and off across development. Some genes are always on. But a lot of developmental genes that affect the development of the brain are on for a while, and then they’re off, because they’re needed during a certain development period. There’s a lot of things that regulate when they’re on and when they’re off. And the environment can regulate turning genes on and off.”

Reactions to the IOM Report

An analysis from the Institute of Medicine has met with fairly predictable reactions.

The New York Times reports:

“The M.M.R. vaccine doesn’t cause autism, and the evidence is overwhelming that it doesn’t,” Dr. Ellen Wright Clayton, the chairwoman of the panel, assembled by the Institute of Medicine, said in an interview. She was referring to a combination against measles, mumps and rubella that has long been a focus of concern from some parents’ groups.

…

Sallie Bernard, president of SafeMinds, a group that contends there is a link between vaccines and autism, said the latest report from the Institute of Medicine excluded important research and found in many cases that not enough research had been done to answer important questions.

“I think this report says that the science is inadequate, and yet we’re giving more and more vaccines to our kids, and we really don’t know what their safety profile is,” Ms. Bernard said. “I think that’s alarming.”

Dr. Clayton said: “We looked at more than a thousand peer-reviewed articles, and we didn’t see many adverse effects caused by vaccines. That’s pretty remarkable.”

The Orange County Register reports:

Despite the report, which comes on the heels of the downfall of Dr. Andrew Wakefield and his research, proponents of an autism-vaccine link claim there's still insufficient science to absolve vaccines.

"The IOM report took two years to produce, mostly behind closed doors, and was paid for by the Department of Health and Human Services, the government agency which is also a defendant against the vaccine-injured in the government's vaccine court," reads the website of the group Age of Autism. "Due to a narrow set of objectives defined for the IOM by the government, the report only looked at a small set of published research studies linking just two vaccines to developmental disorders such as autism."

The IOM report doesn't sidestep the issue of side effects that can result from vaccines. "Though generally very rare or minor, there are side effects, or 'adverse effects,' associated with some vaccines," the report acknowledges. "Importantly, some adverse events following a vaccine may be due to coincidence and are not caused by the vaccine.

California Mandate Legislation

The California State Assembly Appropriations Committee analyzes SB 770, the insurance mandate legislation.

1)Rationale . According to the author, SB 770 provides clarity in the law by mandating that health plans and insurers cover behavioral health treatment, such as Applied Behavioral Analysis (ABA), for those with autism. The author also states the bill defines the scope of these treatments and eliminates unwarranted restrictions on those who are qualified to provide the treatment. The author contends this clarification will save struggling families from the bureaucratic hurdles many face in getting this treatment covered by health plans and insurers.

2)Mental Health Parity . Under current law, California has had partial mental health parity for specified conditions since AB 88 (Thompson), Chapter 524, Statutes of 1999. AB 88 requires treatment parity for serious mental illness (SMI) such as schizophrenia, autism, and anorexia nervosa. This bill would further specify that behavioral health treatment for pervasive developmental disorder or autism (PDD/A) must be covered.

3)Applied Behavioral Analysis . CHBRP's analysis indicates that a similar bill would result in significant increases in behavioral health treatments for PDD/A. Because the largest impact would be an increase in applied behavioral analysis (ABA) and similar services, CHBRP's analysis and this analysis focus on ABA. ABA is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree. Socially significant behaviors include reading, academics, social skills, communication, and adaptive living skills like motor skills, eating and food preparation, personal self-care, domestic skills, home and community orientation, and work skills. ABA requires intensive treatments of more than 25 hours each week and costs about $50,000 each year. Consumers complain about the refusal of health care service plans to cover ABA services. Some independent medical reviews (IMRs) of health plan coverage denials for ABA services for children diagnosed with autism have overturned the health plan's decision to deny coverage, while others have not.

4)Effectiveness of ABA . CHBRP indicates that the literature on the effectiveness of behavioral intervention therapies (BIT), of which ABA is the most popular, is difficult to synthesize since most studies compared intensive behavioral intervention therapies of differing duration and intensity or compared interventions based on different theories of behavior. Thus, most studies of intensive behavioral intervention therapy cannot determine whether BIT improves outcomes relative to no treatment; they can only determine whether some form of BIT is more effective than others. CHBRP notes that even this question is difficult to answer because the characteristics of treatments provided to both intervention and comparison groups vary widely across studies. Additionally, CHBRP states that many studies of BIT do not assess outcomes over sufficiently long periods of time to determine whether use of these therapies is associated with long-term benefits. In conclusion, CHBRP indicates there is some support that BIT, including ABA, can improve IQ and adaptive behavior as compared to other types of treatment. However, the increases in IQ were not sufficiently large to enable the children to achieve levels of intellectual and educational functioning similar to their peers without PDD/A.

Institute of Medicine on Vaccines

From the Institute of Medicine:

FEW HEALTH PROBLEMS ARE CAUSED BY VACCINES, IOM REPORT FINDS

WASHINGTON — An analysis of more than 1,000 research articles concluded that few health problems are caused by or clearly associated with vaccines. A committee of experts convened by the Institute of Medicine to review the scientific literature on possible adverse effects of vaccines found convincing evidence of 14 health outcomes -- including seizures, inflammation of the brain, and fainting -- that can be caused by certain vaccines, although these outcomes occur rarely. It also found indicative though less clear data on associations between specific vaccines and four other effects, such as allergic reactions and temporary joint pain. In addition, the evidence shows there are no links between immunization and some serious conditions that have raised concerns, including Type 1 diabetes and autism. The data were inadequate to reach conclusions about other suggested adverse effects. [emphasis added]

The review will help the U.S. Department of Health and Human Services (HHS) administer the Vaccine Injury Compensation Program (VICP). VICP is committed to using science-based evidence to inform its decisions about vaccine-related adverse effects, and HHS turned to IOM to provide a comprehensive review of study results on eight vaccines covered by the program. The report's findings will be useful to all stakeholders involved in vaccine compensation decisions, including VICP staff, people filing claims, special masters that rule on vaccine cases, and others.

Convincing evidence shows that the measles-mumps-rubella (MMR) vaccine can lead to fever-triggered seizures in some individuals, although these effects are almost always without long-term consequences, the report says. The MMR vaccine also can produce a rare form of brain inflammation in some people with severe immune system deficiencies. In a minority of patients, the varicella vaccine against chickenpox can induce brain swelling, pneumonia, hepatitis, meningitis, shingles, and chickenpox in immunocompromised patients as well as some who apparently have competent immune function, the committee found. The majority of these problems have occurred in individuals with immunodeficiencies, which increase individuals' susceptibility to the live viruses used in MMR and varicella. Six vaccines -- MMR, varicella, influenza, hepatitis B, meningococcal, and the tetanus-containing vaccines -- can trigger anaphylaxis, an allergic reaction that appears shortly after injection. And, in general, the injection of vaccines can trigger fainting and inflammation of the shoulder, the committee noted.

The evidence suggests that certain vaccines can lead to four other adverse effects, although the data on these links are not as convincing, the report says. The MMR vaccine appears to trigger short-term joint pain in some women and children. Some people can experience anaphylaxis after receiving the HPV vaccine. And certain influenza vaccines used abroad have resulted in a mild, temporary oculo-respiratory syndrome characterized by conjunctivitis, facial swelling, and mild respiratory symptoms.

The committee's review also concluded that certain vaccines are not linked to four specific conditions. The MMR vaccine and diphtheria-tetanus-acellular pertussis (DTaP) do not cause Type 1 diabetes, and the MMR vaccine does not cause autism, according to the results of several studies. The evidence shows that the flu shot does not cause Bell's palsy or exacerbate asthma. Suggestions that vaccines can lead to these serious health problems have contributed to parental concerns about immunization for their children.

Establishing a cause-and-effect relationship between an agent and a health outcome requires solid evidence. The committee's conclusions are based on the strengths and weaknesses of several types of evidence, including biological, clinical, and epidemiological research. In many cases of suggested vaccine-related adverse outcomes, there is too little evidence, or the available evidence offers conflicting results or is otherwise inadequate to draw conclusions.

"With the start of the new school year, it's time to ensure that children are up to date on their immunizations, making this report's findings about the safety of these eight vaccines particularly timely," said committee chair Ellen Wright Clayton, professor of pediatrics and law, and director, Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tenn. "The findings should be reassuring to parents that few health problems are clearly connected to immunizations, and these effects occur relatively rarely. And repeated study has made clear that some health problems are not caused by vaccines."

In accordance with its charge, the committee focused solely on findings about potential risks of immunizations. It did not examine information that would have allowed it to draw conclusions about the ratio of benefits to risks. However, the committee members noted that deaths and disability due to infectious diseases have been dramatically reduced over the last century since the majority of vaccines were developed and brought into widespread use.

The study was sponsored by the U.S. Department of Health and Human Services. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. For more information, visit http://national-academies.org or http://iom.edu. A committee roster follows.

Contacts:

Christine Stencel, Media Relations Officer

Luwam Yeibio, Media Relations Assistant

Office of News and Public Information

202-334-2138; e-mail news@nas.edu

Additional resources:

Full Report

Project Website

Report in Brief

A Case in Hawaii

Jim Dooley writes at The Hawaii Reporter:

A much-delayed lawsuit concerning the Hawaii public school system’s treatment of two autistic girls in the mid-1990’s is set to go to trial in October and could cost the state “millions of dollars” in damages for each of the girls, according to public records.

Long delays in the case are attributable to rulings by an octogenarian federal court judge, Manuel Real, whose erratic courtroom behavior and quixotic legal decisions have brought him repeated rebukes and reversals from his appellate court superiors.

The parents of the girls first filed the lawsuit in 2000, alleging that the state had denied the two sisters crucial special education services from 1994 to 1998. The children, identified only as Natalie and Michelle in the suit, were just two and three years old in 1994. They are now 19 and 20.

The suit was filed after an administrative hearings officer first determined that the claim had merit.

Services given the children by the Department of Education improved after 1998, but by that time their educational and social development had been permanently stunted, according to the suit.

Judge Real, 87, who was sitting in the Hawaii District Court as a visiting judge, first tossed out the lawsuit in 2005. That decision was reversed by the U.S. 9th Circuit Court of Appeals in 2008, which remanded the case back to Real with an order that the plaintiffs be allowed to re-draw their complaint.

Real, who is based in Los Angeles, dismissed the amended complaint in March 2009 and the plaintiffs appealed once again to the 9^th Circuit.

That court reversed Real once more a year ago, and then ordered that the case be taken away from him. appellate ruling

Batman and Autism

The entertainment media have raised the profile of the autism issue. Needless to say, Rain Man was a milestone. NBC's television show Parenthood features a character with Asperger's.

And now comic books. The Bergen Record reports:

Batman has brought down criminal clowns and conniving cat burglars. Against autism, however, you would think all of his flying kicks and batarangs would be useless.

Maywood’s Joe Caramagna says you might be surprised.

He believes the comic book adventures of Batman and other superheroes can be a tool to help kids with autism. To that end, he has written a story in the new issue of DC’s “Batman 80-Page Giant 2011” that explores the relationship between comics and the disorder that affects one in 94 children in New Jersey.

“I began to research on message boards and websites about how some children with autism like to read comic books,” said Caramagna, who’s worked for both Marvel and DC Comics. “For some kids, there’s something about the pictures and the text broken into smaller pieces that makes it easier to read than prose novels.

“I wanted to tell a story where comics can make a difference in someone’s life and get their creative juices going. I don’t want to make it sound like if you give a kid a comic, he’ll be cured. But I think they can be used as part of a creative therapy or artistic therapy. With autism, no one knows what might be the thing that unlocks their imagination.”

The ASD Future: Positive and Negative Signs

The Sonoma News reports from California:

Those who understand the complexities of autism know that the nation is facing a great, and rapidly growing need.

"Eighty-five percent of people with autism are under the age of 22," said Mark Jackson, the father of a 19-year-old autistic man. Jackson serves on the coordinating council of the California Senate Select Committee on Autism.

The question becomes how does America deal with the proper care of this expanding segment of the population, which grew at a rate of 1,148 percent in the past 20 years, according to the California Department of Developmental Disabilities. The number of facilities equipped to deal with the special needs of autism are few and far between - more than 80,000 autistic adults are currently waiting up to 10 years for placement in a residential facility. Those daunting statistics inspired a group of Bay Area parents to envision a better option for their autistic children. What they came up with is a revolutionary concept that will take root in Sonoma but could serve as a national model.

"It literally started with 'Where are our kids going to live?'" Jackson said. "We ultimately decided this is bigger than just us."

The parents, aided by an advisory board that includes some of the state's top experts on autism, established the nonprofit Sweetwater Spectrum, which will build a residential living facility exclusively for adults living with autism. The project will be located at the northwest corner of Fifth Street West and West Spain Street, on a 2.9 acre piece of land that the City of Sonoma previously owned, and which was zoned for 14 residential properties. Sweetwater Spectrum won wholehearted support from the City Council, sailed through the Planning Commission and Design Review Commission, and is set to break ground on Sept. 10, with the hopes to have the entire project completed within a year.

Peter Bell of Autism Speaks writes at NJ Spotlight:

Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.

Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.

On a less encouraging note, The Decatur Daily reports from Alabama:

Despite more than three decades of public education, group homes continue to face the “not in my backyard” attitude.

So say advocates for those with intellectual disabilities — and Carol Taylor, whose adult son Lane Barnes lives in a group home on Cleveland Avenue Southwest in Decatur.

They say little has changed since Congress passed the Fair Housing Act of 1968.

“We’re still hearing the same old stories about property values and crime,” Taylor said.

Group homes — and property values — have been a topic of discussion in Hartselle lately.

About three weeks ago, Hartselle City Council President Kenny Thompson said his home answering machine was flooded with messages from residents not happy about a proposed group home in the Mason Drive area.

The state licenses group homes in three categories — intellectual disabilities, mental illness and substance abuse. The home in Hartselle would be for those with disabilities, not individuals with psychiatric- or substance abuse-related problems.

In fact, Lawrence, Limestone and Morgan counties only have intellectual disabilities homes. Morgan leads the way with 50 homes, including 43 in Decatur. There are seven in Limestone and four in Lawrence County.

Specific numbers were not available by county, but the waiting list statewide to get into a group home contains 2,700 families, Alabama Department of Mental Health spokesman John Ziegler said.

“There’s definitely a need for more group homes,” he said.

More on the CA Mandate Bill

An earlier post described SB 770, a California mandate bill. Michelle K. Wolf writes at The Jewish Journal of Greater Los Angeles

According to Marty Omoto, Director of the California Disability Community Action Network, there’s a very important piece of pending legislation in Sacramento authored by Senate President Pro Tem Darrell Steinberg (Democrat - Sacramento, 6th State Senate District) that would require health managed care plans and health insurance plans to provide behavioral health treatment for persons with autism spectrum disorders as a covered benefit.

This bill, SB 770, would mandate coverage of behavioral health treatment, such as Applied Behavioral Analysis (ABA) and other intensive early intervention therapy, for thousands of people with autism spectrum disorders. The bill expands the list of qualified autism providers to include any licensed or nationally certified professional, or any provider of these services approved as a vendor by one of California’s 21 non-profit regional centers which contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities.

Sponsors of the bill include Autism Speaks, Alliance of California Autism Organizations, Special Needs Network, and The Help Group.

Steinberg is hoping to see SB 770 passed before the Legislature adjourns for their year on September 9th but the bill is expected to face fierce opposition from managed health care plans, who in the past have said that behavioral health treatments for autism should be provided by school districts and the state-funded regional centers. Naturally, both the school districts and regional centers expect for private insurance to pick up the tab. In the middle of this high stakes game of “eeny, meeny, miny, moe” are the parents of children diagnosed with Autism Spectrum Disorders, just trying to get funding for their child.

The Bay Citizen reports on the bill, noting the struggles of autism dad Kevin Epstein:

For years, health insurers and state agencies have battled over who should pay for behavior-based interventions for autistic children. Each tries to shift responsibility to the other. That has left a great number of families like the Epsteins without coverage.

Last month, two major insurance companies — Blue Shield of California and Anthem Blue Cross — agreed to reimburse initial costs for ABA, provided it is administered by a licensed analyst.

But California has no such licensing process.

“That’s like saying a nurse has to be licensed in giving you a flu shot, but there is no license for flu shot administering in California,” Epstein said. “The so-called agreement is a complete sham. The new bill is necessary to close the loopholes.”

Kristin Jacobson of the Alliance of California Autism Organizations, a proponent of the new bill, agreed that the settlement had “a fatal flaw,” despite being well-intentioned.

“It’s akin to denying chemotherapy for cancer or insulin for diabetics,” said Jacobson. “This is a well-recognized treatment and somehow health insurance companies have decided to deny it.”

By shifting financial responsibility to insurers, the bill, SB 770, would save the state between $100 to $200 million, according to Jacobson.

The California Association of Health Plans, the trade association representing the state’s insurance companies, opposes the bill, insisting that insurers already provide "comprehensive coverage for autism-related medical services."

...

"Treat it early, it's a small problem," Epstein, the father, said. "Treat it later, it's a big problem."

Epstein believes his son Elliott's ABA treatments were "worth every penny."

“Three years later, he is verbal. Although he’s hardly studying Shakespeare, he has basic communication,” Epstein said. “Without therapy, you wouldn’t have that. You’d have a 6-year-old looking like a 3-year-old."

But battling with insurance companies has taken a toll. Epstein said that to date, Blue Shield has reimbursed only a "nominal" amount.

“Every hour and dollar that I’ve spent having to go obtain the coverage that I thought I’d been paying for for two decades is hours that could have been spent with my son, could have been spent with my family, dollars that could have been spent providing him with a better quality of life,” he said. “When you’re stripping your house payment to pay for your son’s medical coverage, that can’t be good.”

A Voucher Setback in Colorado

AP reported last week:

A Denver judge blocked Colorado's first school voucher program Friday, calling the program to give parents in the state's wealthiest county checks for tuition at religious schools a "substantial disservice to the public interest."

Denver District Judge Michael Martinez sided with a group of parents, the American Civil Liberties Union of Colorado and the group Americans United for Separation of Church and State. They asked for an injunction blocking the "Choice Scholarship Pilot Program" in Douglas County.

The voucher opponents argued the program violates the separation of church and state because it gives taxpayer money to parents for use at approved private schools, including some religious schools.

The judge noted that some of the schools authorized for Douglas vouchers require students to attend religious services. Martinez said the voucher program "violates both financial and religious provisions set forth in the Colorado constitution."

School-choice advocates vowed to appeal. More than 200 students have already gotten voucher money from the county to use this fall. One of the private schools in the program starts Monday, and it wasn't immediately clear whether any of the checks had been cashed. A message for the school district spokesman was not immediately returned Friday afternoon.

Wayne Laugesen writes at The Colorado Springs Gazette:

A low-court ruling to stop Douglas County’s school voucher program is a decision to segregate and oppress. Higher courts will likely side with parents and children, not special interests and bureaucrats.

...

When Denver District Judge Michael Martinez blocked the voucher program, he chose to empower local government to restrict decisions of parents and children. That’s why Diana Oakley testified near tears at the injunction hearing. She correctly feared the court would limit her son’s options. The boy has autism. She planned to use his voucher to pay for a private school that could help him succeed. As a result of the ruling, at least for now, the boy’s hopes are gone. Unlike Linda Brown, the boy won’t be able to attend the school that makes most sense. He will attend a school that Martinez determined is entitled to the boy’s money.

It is the boy’s money, afterall. In Colorado, education money attaches to children. With each child who enrolls, a public school gets more than $6,000 for the year.

Vouchers issue the money to parents. At that point, the money belongs to the parent and child. They are free to spend it at almost any accredited school, religious or otherwise. Public schools hate it because they want all the money

Assortative Mating and Autism

Time is hyping the assortative-mating theory of autism causation: that people at the higher-functioning end of the spectrum are marrying and passing the genes onto their children. A Time blog post acknowledges that there is scant evidence for the theory. Also note that Simon Baron-Cohen has been musing about this theory for more than six years.

Autistic Adults and the Balancing of Interests

The Cleveland Plain Dealer reports on Simon Greenspan, an autistic adult living with his parents who created severe problems for the neighborhood:

To prod the Greenspans to do something about their son, police charged the Shaker Heights couple more than $6,500 in nuisance fees for 20 separate police calls to the neighborhood because of their son's outbursts. The police began assessing fees after a fourth violation prompted a warning letter from the city.

The Greenspans bitterly fought what they called a punitive attack by the city. But in their appeal hearing, neighbor after neighbor testified against them.

"My feeling, and in discussion with neighbors, is that if the assessments are not applied here, the Greenspans will consider themselves to be beyond the reach of this community and that they can bring their son back," said Aaron Bulloff, a lawyer who lives near the Greenspans, according to a transcript of the hearing.

Shortly after the last nuisance fee was assessed in September of last year, the Greenspans sent Simon to a therapy center in Ogden, Utah, where he lives in an apartment with 12 other adults with disabilities.

...

"I don't know where the line is in this case, but I don't think you get a free ticket," said Scott Standifer, an associate professor in the University of Missouri School of Health Professions who has written a guide for autistic adults in the workplace.

"There is room for accommodation," he said. "Then there is room for respecting other people's boundaries."

The paper editorializes:

The population of people affected by autism is growing, and although the affliction manifests itself differently in different people, vocal or even violent outbursts are not uncommon.

The experience of the Simon family and their neighbors is a cautionary tale for every neighborhood and every community to ponder. Most, it is safe to say, lack a solution more creative or satisfying than the one the Greenspans reluctantly chose.

Legally, this case was about a balancing of rights.

Humanely and practically, the right thing to do now is to consider whether better options might be established for autistic adults unable to abide by social norms.

A Case in Minnesota

Maura Lerner reports at The Minneapolis Star-Tribune that a 4-year-old from Maple Grove has prevailed in a court case to make Minnesota cover his ABA:

The child, identified only as T.O., and his mother sued the state for refusing to pay for his treatment during a six-month period when his family was in a state-funded managed care plan run by HealthPartners. Under the ruling, HealthPartners must pay for the treatment, which in his case totaled about $25,000, according to Amy Dawson, the family's lawyer.

"I think it's an important victory," said Dawson, founder of the Autism Advocacy and Law Center in Minneapolis.

She said she filed the lawsuit to draw attention to what she called a double standard in the state Medicaid program, a health plan for the poor and disabled.

State officials have said that ABA is not a covered treatment under the rules of Medicaid. In April, however, the Star Tribune disclosed that Minnesota taxpayers have paid millions of dollars for ABA therapy for hundreds of children, many from affluent families. Yet the same coverage is routinely denied to children like T.O. in Medicaid managed-care plans for the poor.

ABA programs offer up to 40 hours a week of one-on-one therapy for autistic children, far more than other forms of treatment.

In her lawsuit, Dawson noted that the state began paying for the boy's ABA treatments after he switched into the disability branch of the program. She argued that the state should have been paying for his therapy all along.

In a ruling dated last week, Judge Louis Thayer agreed.

"The services are identical," wrote Thayer, a judge with the Department of Human Services (DHS), which runs Medicaid in Minnesota.

But, he added: "I lack the authority to address the broader issue of whether [intensive therapy] will always be covered."

California Bill

A release from the president pro tem of the California Senate:

Steinberg Pushes Bill to Mandate Insurance Coverage of Autism Treatment; Expands Scope of Services and those who provide them

Wednesday, August 17, 2011

For Immediate Release - Contact: Alicia Trost - 916-651-4006

(SACRAMENTO) — Responding to a recent agreement between the California Department of Managed Health Care (DMHC) and two health care insurers, an agreement which parents of autistic children and advocates called a “sham,” Senate President pro Tem Darrell Steinberg is now pushing a bill in the final weeks of session which will eliminate bureaucratic roadblocks for those seeking insurance coverage for autism treatment.

SB 770 mandates coverage of behavioral health treatment, such as Applied Behavioral Analysis (ABA) and other prescribed intensive early intervention therapy, for those with autism. The bill also defines the scope of these treatments and eliminates unwarranted restrictions on those who are qualified to provide the treatment.

“Parents of autistic children shouldn’t have to spend their days and sleepless nights battling with insurance companies because of a lack of clarity regarding this highly effective therapy. ABA has long been considered medically necessary and has proven remarkably effective for a majority of families,” Steinberg said.

Advocates raised concerns that the DMHC agreement created an undue restriction on qualified ABA providers by imposing a licensure requirement that is not required by state law.

“The recent agreement added urgency to clarify who is authorized to perform treatment,” Steinberg said. “We need a more expansive network which includes those who are expertly trained and on the cutting edge of ABA therapy so parents don’t have to jump through bureaucratic hoops to get children the services they need.”

The bill expands the list of qualified autism providers to include any licensed or nationally certified professional, or any provider of these services approved as a vendor by one of California’s 21 non-profit regional centers which contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities.

Sponsors of the bill include Autism Speaks, Alliance of California Autism Organizations, Special Needs Network, and The Help Group.

From a release by Autism Speaks:

NEW YORK, NY (August 17, 2011) – Autism Speaks, the nation’s largest autism advocacy organization, joined California families today in applauding Senate President Pro Tem Darrell Steinberg on his effort to amend legislation that would give families caring for children with autism access to insurance coverage for critical therapies. “It is long past time for California to join the 27 other states that have enacted autism insurance reform legislation to protect families from the discriminatory practices of the health insurance industry,” said Lorri Unumb, Esq., Autism Speaks vice president of state government affairs. “Senator Steinberg, Assembly Speaker John Perez and other legislators, recognizing that the DMHC settlements need to be clarified, are showing the leadership necessary to ensure that families get the treatments their children deserve.”

The Blues v. Judges and State Regulators

Atlantic Information Services reports:

At least four Blues plans are in legal or regulatory hot water over their refusal to cover the cost of applied behavior analytics (ABA) — a common form of treatment for children with autism spectrum disorder — in their standard policies. The controversy could reach a climax in 2014 when the health reform law will require health plans to cover behavioral therapies on par with other medical treatments in all policies.

Previous posts discussed cases in California. This report mentions two others:

• Blue Cross Blue Shield of Michigan: A federal judge in Detroit recently granted a motion for class certification in a suit filed by the families of children denied ABA therapy coverage, according to plaintiffs’ attorney John Conway. The suit alleges that the Blues plan “has illegally characterized ABA therapy as ‘experimental,’” he says, “even though it is validated by overwhelming medical and scientific authorities.” Conway says the Michigan plan has faced similar legal actions more than once already, including paying out a $1 million settlement and a $125,000 settlement just last year.

Michigan Blues spokesperson Helen Stojic says that the ruling is “a decision to continue the case and is not a ruling on the merits of the case.” She adds: “We believe that we have been more progressive than other Michigan insurance companies in addressing autism. In 2009, we became the first insurer in the state to offer businesses with our coverage the option to purchase coverage for autism treatment programs that provide intensive early intervention. To the best of our knowledge, we are the only insurer in Michigan to offer this coverage option to businesses.”

• Empire Blue Cross and Blue Shield of New York: A federal judge also refused to dismiss a class-action suit against Empire. “Empire is committed to keeping abreast of the medical research regarding treatment for autism, including ABA therapy,” Kweskin says. “Decisions regarding whether therapies for autism are medically necessary are made by a review committee, the members of which include physicians and other experts.”

Specifically, she adds, “when considering a claim for ABA therapy, Empire takes into account all information that is submitted to support the claim, including any medical records, correspondence and therapy session notes.” Also, she says, “Empire is aware of laws enacted in New York regarding coverage for autism therapies, and is in full compliance with all of these laws. While Empire has been sued regarding coverage for ABA therapy, the laws, members’ policies and facts in each case are different.”

Reaction to Screening Article

Rebecca Voelker writes at JAMA:

After an article that discourages routine autism screening appeared online in Pediatrics, coauthor Jan Willem Gorter, MD, PhD, heard an array of heartfelt responses. “Some people were upset, especially parents with a child with autism,” said Gorter, an associate professor of pediatrics in the McMaster University Faculty of Health Sciences in Hamilton, Ontario, Canada. “I also got responses of parents who had a child mislabeled with autism initially, and that had a huge impact on the parents' life and the child's life.”

The study struck an emotional chord by concluding that sound evidence to support routine screening is lacking (Al-Qabandi M et al. Pediatrics. 2011;128[1]:e211-e217). The authors say that currently available autism screening tools have not been evaluated in randomized controlled trials and that treatment is only modestly effective in certain subgroups of children.

Autism and Recurrence among Siblings

MedPage Today reports:

Among families who have a child with an autism spectrum disorder (ASD), the risk of a subsequent child developing an ASD may be higher than previously estimated, a multicenter study showed.

In a study of 664 infants born into familes with an affected child, the ASD recurrence rate was 18.7% (95% CI 13.34% to 25.5%), with greater risks in male infants and in those with more than one affected older sibling, according to Sally Ozonoff, PhD, of the MIND Institute at the University of California Davis, and colleagues.

Most previous studies have put that figure at 3% to 10%, with one recent report estimating a 14.2% recurrence rate, the researchers reported online ahead of the September issue of Pediatrics.

Susan Levy, director of the Regional Autism Center at Children's Hospital of Philadelphia, said in an interview with MedPage Today that she is not surprised by the higher rate.

"There have been hints and suggestions from data from different, smaller studies that have implied that the recurrence risk is really higher than the 10% that we have ended up quoting," said Levy, who is a member of the American Academy of Pediatrics' autism subcommittee.

"So this [study] is confirmation and it's really consistent with other results I've heard about," she said.

A Fight in Oxford

Nearly everything about autism involves harsh arguments. The latest example come from Oxford University. Cherwell, the university's independent student newspaper, reports:

Two Oxford professors have been engaged in a high-profile disagreement about the causes of autism.

The row started after Baroness Susan Greenfield, Professor of Synaptic Pharmacology at Lincoln College and former director of the Royal Institution, suggested in an interview with the New Scientist that increasing use of the internet and electronic devices could be linked to autism in young people.

Greenfield claimed that this was likely to be a factor in the rising rates of autism diagnosis. She told Cherwell, “it is hard to see how obsessive cyber activities couldnotbe having some impact on the brain, because the human brain has evolved to adapt to its environment”.

However Dorothy Bishop, a Professor of Neuropsychology at St John’s, has publicly attacked Greenfield’s suggestions, dismissing them in an open letter to her colleague as “illogical garbage”. Speaking to Cherwell, she said: “The specific problem concerns her [Baroness Greenfield] repeatedly mentioning autistic spectrum disorder (ASD) in connection with her concerns about dangers of internet use”.

Autism, Vaccines, and the Media

From KTRK in Houston:

"I think vaccine refusal is finally kind of dying out," Kelsey-Seybold Clinic Immunization Director Dr. Melanie Mouzoon said.

More kids are getting their shots now that the vaccine-autism controversy is dying down. The British researcher who made that claim has been discredited because he allegedly falsified his research.

"They're also beginning to understand that science has shown that autism is not caused by vaccines and so very few people are refusing vaccines now," Dr. Mouzoon said.

And that means fewer outbreaks of vaccine-preventable illnesses, like recent measles epidemics. And the new vaccines and boosters that come out almost every year will also prevent outbreaks.

"The kind of illnesses that we can prevent are increasing and so really, it's good news," Dr. Mouzoon said.

But the Colorado Springs Gazette has this headline: Vaccination Safety: The Debate that Won't Disappear

The percentage of opt-outs is small. In 2009, the national immunization rate for children ages 19 months to 35 months was at or above the 90 percent goal set by public health officials, according to the U.S. Centers for Disease Control and Prevention’s National Immunization Survey.

In the area’s largest school district, Colorado Springs School District 11, 3.6 percent of its 29,400 students — about 1,058 — have received exemptions. In Academy District 20, 9 percent of its 23,119 students received an opt-out based on one or more of the state’s three approved reasons for exemptions: medical, religious and personal.

But underlying the high vaccination rates are indications that a majority of parents have concerns about the safety and effectiveness of vaccines, and some health officials worry that could lead to a decline in immunizations which, in turn, could cause a rise in the diseases they’re meant to prevent.

The story quotes a vaccination critic:

Barbara Loe Fisher also believes parents need to better educate themselves about vaccinations, but she’s coming from a different perspective than the public health community. Fisher, co-founder and president of the National Vaccine Information Center, said she’s not against vaccinations per se, and her children have received several — but not all — of them. But one of her four kids is learning disabled, which she blames on a diphtheria-pertussis-tetanus shot.

“Everybody knows somebody today who was healthy, got vaccinated and is not healthy,” she said. “People’s real-life experience is becoming disconnected from what health authorities tell them.”

She said immunizations should not be given on a one-size-fits-all schedule, because children have different genetic and biological makeups. She also notes that a national program created in 1986 to compensate families whose children were harmed by vaccines has awarded about $2 billion, indicating that the shots are not 100 percent safe.

And she questions why the number of children diagnosed with chronic diseases or disabilities, as well as the number of infant deaths, has risen along with the number of recommended shots. It begs for more research, she contends.

“We believe the science is not adequate to answer the question, ‘Has the use of multiple vaccines ... had a negative effect on long-term good health?’”

The Respectful Insolence blog says that the argument about the vaccine schedule is "nonsense from a scientific standpoint; there's no compelling evidence that `too many too soon' is a valid complaint against the current vaccine schedule, and the current vaccine schedule contains far fewer antigens than it did 25 years ago, thanks to the use of antigens produced by recombinant DNA technology replacing older, whole cell lysate-based vaccines." The post also criticizes "the classic journalistic trope of `tell both sides,' in which on the one side we have a bunch of doctors and scientists citing research and clinical data, and on the other side we have a complete crank, with the two being presented as though their viewpoints had equal validity and as if there were a real scientific debate rather than a manufactured controversy."

TV Report on the Rhode Island Mandate

WJAR in Providence reports on the new insurance mandate law in Rhode Island:

Special Education Parent Centers

A release from the US Department of Education:

Department Awards Over $5 Million to 19 Special Education Parent Centers
AUGUST 12, 2011

Contact: David Thomas, (202) 401-1579, david.thomas@ed.gov


The U.S. Department of Education today announced the award of more than $5 million in grants to operate 19 special education Parent Training and Information (PTI) Centers in 13 states and Puerto Rico.

With the new grants, the Department now funds 91 information centers for parents of students with disabilities. Every state has at least one Parent Training and Information Center, which assists parents as they work to ensure their children receive a free, appropriate public education as guaranteed by federal law.

“Parent Centers help families better understand their child’s disability and can often connect them to important local, state and national resources,” said U.S. Secretary of Education Arne Duncan. “These centers will play a vital role in empowering parents and families to learn about appropriate early interventions and special education services.”

Parent information centers provide parents with the training and information they need to work with special education professionals in meeting the early intervention and special needs of children with disabilities. Many parent information centers work closely with state and local school systems to engage parents in working collaboratively to improve outcomes for students with disabilities.

For a list of Education Department-funded special education parent information and training centers, visit www.parentcenternetwork.org.

The following is a list of the grants the Department announced and the states or audience that they will serve, including the contact information for the local project directors and the amount of each award:

Parent Training and Information Centers:

AK – Stone Soup Group, Kelly Donnelly, kellyd@stonesoupgroup.org, $263,115
AL – Alabama Parent Education Center, Jeana Winter, jwinter@alabamaparentcenter.com, $291,281
CO – PEAK Parent Center, Julie Harmon, Jharmon@peakparent.org, $279,445
FL Region 1 – Florida Network on Disabilities, Nicole Brown, Nicole@fndfl.org, $169,645
FL Region 2 – Central Florida Parent Center, Eileen Gilley, Eileen@cflparents.org, $491,973
FL Region 3 – Florida Network on Disabilities, Margarita Montalvo, margarita@fndfl.org, $330,801
KY – Kentucky Special Parent Involvement Network, Paulette Logsdon, paulette@kyspin.com, $258,607
MD – The Parents’ Place of Maryland, Josie Thomas, josie@ppmd.org, $319,295
ME – Maine Parent Federation, Janice LaChance, jlachance@mpf.org, $188,545
ND – Pathfinder Parent Center, Cathy Haarstad, ptidirector@srt.com, $204,947
NE – PTI Nebraska, Glenda Davis,gdavis@pti-nebraska.org, $224,894
NV – Nevada P.E.P., Karen Taycher, ktaycher@nvpep.org, $202,813
NY Region 1 – Advocates for Children of New York, Anna Espada, aespada@advocatesforchildren.org, $210,813
NY Region 1 – Resources for Children with Special Needs, Rachel Howard, rhoward@resourcesnyc.org, $210,813
NY Region 1 – Singeria, Godfrey Rivera, grivera@sinergiany.org, $210,813
NY Region 2 – The Advocacy Center, Barb Klein, klein@advocacycenter.com, $524,874
PR – APNI, Mariel Cabrera, mcabrera@apnipr.org, $271,950
VT – Vermont Family Network, Christine Kilpatrick, christine.kilpatrick@vtfn.org, $189,052
WI – Wisconsin FACETS, Jan Serak, jserak@wifacets.org, $438,408

Autism and Animals

KXTV in Sacramento, CA, reports on service dogs:



Details about laws and regulations are here.

An editorial from the Fayetteville [NC] Observer:

A hand, please, for Lisa Pia, who may soon prove you can fight City Hall. Pia's fight was for her 10-year-old autistic son, Anthony, and his beloved pet, Loopey the potbellied pig. Loopey was more than Anthony's pet - she was a therapeutic animal who helped Anthony make progress in his struggle with autism.

Unfortunately, a less-than-compassionate majority on the City Council was unable to make a distinction between a small potbellied pig and a hulking domestic porker on its way to becoming spare ribs. Loopey was exiled beyond the city limits.

The pig still is a resident of the Jambbas Ranch, outside the city, where Anthony visits her.

But Lisa Pia didn't stop fighting when Loopey got the boot. She filed a housing-discrimination complaint with the U.S. Department of Housing and Urban Development, which, according to communications an Observer reporter has seen, is leaning toward agreeing with Pia.

In an email sent to council members in July, Mayor Pro Tem. D.J. Haire advised that "HUD recommends that we make accommodations for the family to have the pig." Beyond that, HUD, the city and Pia have been sworn to temporary silence.

We hope Loopey and Anthony are reunited. More important, the city needs to draft an enlightened policy about therapy animals. That would be a real victory.

See TV news story on the dispute.

Canadian Health Care and Autism

The Canadian Medical Association has released a report highly critical of the country's health care system. This passage deals with autism:

A father with an autistic son said that the Canada Health Act does not constitute value for autistic patients because it does not ensure they receive the care they need. He talked about the fractured nature of services provided for autistic care across the country. “I’ve watched people lose their homes and sell everything they own to provide for their children,” he said, reiterating that the range of autistic care services across the country is “abysmal.” At the very least, he said, the need to agree on at least a diagnosis for children such as his son should be recognized.

He noted that care is not available for autistic children in Inuit families “and you can forget getting help. It does not exist for you. ... Our system must meet the basic needs of our most vulnerable and disadvantaged people.” He said there is a two-tiered system for care for autistic patients in Canada, with those in British Columbia, Alberta or Ontario having access to good programs that do not exist elsewhere in the country or in rural areas. “That’s just not right,” he said, adding that the federal government must provide some direction to resolve this issue.

A Ceremony in Rhode Island

The Providence Journal reports on a ceremony surrounding an insurance mandate:

Governor Chafee on Thursday morning held a ceremonial signing of legislation that requires insurers to to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders.

He was joined by families of, and advocates for, people with autism, as well as Rep. Peter Palumbo, D-Cranston, and Sen. Edward O'Neill, D-Lincoln, the legislation's primary sponsors, for the State House event.

The legislation -- H5275 and S107 - is meant to help alleviate the financial strain faced by parents of children with autism, who often cannot afford early and intensive behavioral therapies that advocates say are effective in helping children learn to talk and better relate to other people and their environments.

For the most severely affected children, these treatments can cost $50,000 a year or more, families and advocates have said.

The new state law requires health insurers to cover up to $32,000 a year in autism diagnosis and treatment for children, up until their 15th birthdays. Among the treatments required to be covered are behavioral therapies.

Rhode Island became the 27th state to mandate coverage for autism when Chafee officially signed it into law at the end of June.