World Autism Awareness Day

 A presidential proclamation:

With autism spectrum disorders (ASDs) affecting nearly one percent of children in the United States, autism is an urgent public health issue with a profound impact on millions of Americans. World Autism Awareness Day is an opportunity to recognize the contributions of individuals with ASDs and rededicate ourselves to the cause of understanding and responding to autism.

Men and women on the autism spectrum have thrived and excelled in communities across America and around the world. Yet, despite great progress in understanding ASDs, challenges remain for these individuals and their loved ones. For too long, the needs of people living with autism and their families have gone without adequate support and understanding. While we continue to encourage the development of resources for children on the autism spectrum and provide necessary resources for their families, we must also remember that young people with ASDs become adults with ASDs who deserve our support, our respect, and the opportunity to realize their highest aspirations.

As our understanding of the autism spectrum grows, my Administration remains dedicated to supporting children and adults impacted by autism. Led by the Department of Health and Human Services, we have expanded investments in autism research, public health tracking, early detection, and services -- from early intervention for children to improved long-term services and support programs for adults. My Administration maintains a firm commitment to advance autism research and treatment, as well as promote education, employment, and equality for all individuals with autism, from early childhood through employment and community life. We will continue to work with the Congress, experts, and families to improve Federal and State programs that assist individuals with ASDs and their families and to bolster the impact and reach of community support and services. I encourage all Americans to visit www.HHS.gov/autism for more information and resources on ASDs.

With each breakthrough in research and each innovative treatment, we open endless possibilities for the many American families who have been touched by autism. As we mark World Autism Awareness Day, let us recommit to improving the lives of individuals and families impacted by ASDs and creating a world free from discrimination where all can achieve their fullest potential.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2 of each year as World Autism Awareness Day. I call upon the people of the United States to learn more about autism and what they can do to support individuals on the autism spectrum and their families.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-fifth.

BARACK OBAMA

Autism Public Service Announcements

Washington State Family Fights Insurer in Court

The Seattle Times reports:

Two Seattle lawyers have been quietly pushing to force insurers to cover therapy for autistic children.

Their latest success, against Premera Blue Cross and its subsidiary, LifeWise Health Plan of Washington, involves "A.G.," a 13-year-old Renton boy with autism.

This week, King County Superior Court Judge Michael Trickey ruled that the insurer's blanket exclusion for treatments of "developmental delay or neurodevelopmental disabilities" violates public policy as spelled out in Washington's Mental Health Parity Act.

Ele Hamburger and Richard E. Spoonemore of Sirianni Youtz Spoonemore have filed seven class-action lawsuits in state and federal courts against insurers, including Group Health Cooperative, Regence BlueShield and Molina Healthcare, and state programs such as Medicaid and the Uniform Medical Plan, which provides health coverage to public employees.

The lawsuits seek coverage for Applied Behavioral Assessment [sic] (ABA), a popular therapy for children with autism-spectrum disorder, as well as other behavioral and neurodevelopmental therapies, such as speech and physical therapy. Most of the lawsuits are still under way.

"We are looking to fundamentally alter the way health insurers in Washington cover therapy for autism" and other developmental disabilities, Spoonemore said.

The ruling is a preliminary injunction, applying only to A.G.'s case while the case is being litigated, Trickey said.

McClatchy reports that A.G. is Aidan Griffin, son of  John and Kathy Griffin:

For the last four years, Primera Blue Cross, the Griffin's health insurance company, has covered Aidan's speech and occupational therapy -- until now.

"Usually when you get your bill from the insurance company it's a regular-sized envelope. We got a giant envelope with a big stack of forms dated back to January 2010 saying we owed $24,000," John said..

KING-TV reports:

Alaska: Gumballs and Insurance

KTUU-TV in Anchorage reports that the Alaska House has just 15 days to act on Senate Bill 74, an insurance mandate. 

Sen. Johnny Ellis (D-Anchorage) says that over the course of a lifetime, early diagnosis and intervention in autism can save the state more than $200,000 in special-education costs, and millions more over the lifetime of someone who suffers from the disorder. That's because intervening early -- before the neural pathways of a child's brain have fully formed -- can disrupt much of the asocial behavior of a child with autism.

Six-year-old Mhina Richardson of Juneau would seem to be living proof of the benefits of early intervention. A year and a half ago, she was diagnosed with autism. Her mother, Beth, took her to therapists. Today, to an outsider, she looks and acts like any healthy, happy 6-year-old. Her mom can still tell that Mhina has challenges, but she also insists the early intervention made a big difference.

"She's doing really well now," Beth Richardson said.

On Friday, Beth, Mhina and perhaps a dozen other people toured the state Capitol handing out gumballs to lawmakers. Their point was that for the price of those gumballs, every child in our state can be insured for autism treatment.

They are urging that lawmakers hold hearings on Senate Bill 74, and their requests have finally been heard. The House Health and Social Sciences Committee announced Friday that it would hold hearings on the measure within the next 10 days.

Update on the CDC Data

At CNN, Sanjay Gupta and John King discuss the CDC data:

 

Also at CNN, Geraldine Dawson of Autism Speaks talks about the data:

At the Los Angeles Times, Alan Zarembo writes:

Some experts questioned the validity of relying on records to estimate the disorder's true prevalence.

David Mandell, an autism expert at the University of Pennsylvania, said the CDC's numbers primarily reflect the degree to which the diagnosis and services have taken hold in different places and among different groups.

"As the diagnosis is associated with more and more services, this becomes a less and less rigorous way to determine the prevalence of autism," he said, referring to the CDC's methods.
The federal agency found that Utah, which has widespread screening programs, had the highest rate—1 child in 47. The state was closely followed by New Jersey, which prides itself on its autism services, at 1 in 49.

At the bottom was Alabama, one of the poorest states in the country. Its autism rate fell 20% between 2006 and 2008 — from 1 in 167 to 1 in 208.

CDC officials acknowledged the limitations of their analysis. In surveillance areas where researchers had access only to health records, and not school records, prevalence estimates were generally lower. Including the capital city of Raleigh in North Carolina's surveillance area dramatically increased the state's rate.

"Our study really is more of a study of demographic differences and population differences," said Jon Baio, a CDC epidemiologist and principal investigator on the report.

Reuters TV on CDC Prevalence Data

Sharon Begley of Reuters talks about the CDC report on prevalence:

 

Michigan Mandate Passes

The Detroit Free Press reports:

Insurers must provide coverage for therapy for Michigan's autistic children beginning Oct. 1 as part of a package of bills passed Thursday by the Michigan Legislature.

The bills, which are expected to be signed by Gov. Rick Snyder, also create a state fund to reimburse insurers for treatment costs.

"This is a big day," said David Meador, executive vice president and chief financial officer for DTE Energy. His 15-year-old daughter, Maribel, is autistic.
...
Advocates for the insurance mandate had failed in several earlier attempts to win legislative approval, largely because of opposition from business groups opposed to insurance mandates and worried about costs.

But the campaign built significant momentum in the last year with backing from Snyder and Lt. Gov. Brian Calley, who has an autistic daughter. The autism bills were approved Thursday with broad bipartisan support.

They passed with a 91-19 vote in the House and 30-8 in Senate.

The Detroit News reports:

In Michigan, about 15,000 children and teens are diagnosed with autism disorders. Autism is diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. Its cause remains a mystery.Calley said passage of the bills will benefit not only families but the state of Michigan. The state will realize $13 billion to $15 billion in savings over the lifetimes of children who will now be able to receive therapies needed to reach their full potential, he said.

"We know that half of (children with autism) can reach independence, reach typical function," Calley said.

Calley championed the three-bill autism package as the father of a small daughter with autism.

"This will benefit other families much more than mine," Calley said. "I'm in a fortunate position to have resources and connections, to be (among) the 1 or 2 percent of families in Michigan that have access to therapy.

"The vast majority (can't afford treatment) so they get this diagnosis and they don't get the therapy they need. That's why you see divorces and why families with autism are much more likely to be in poverty."

Autism and Cost

Autism Speaks reports:

Autism Speaks, the world’s leading autism science and advocacy organization, today announced preliminary results of new research that estimates autism costs society a staggering $126 billion per year (U.S.) – a number that has more than tripled since 2006, and annually in the U.K. has reached more than £34 billion (equivalent to $54 billion U.S.). The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. and £1.5 million ($2.4 million) in the U.K. The lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million in the U.S. and £917,000 in the U.K. (equivalent to $1.46 million). The Autism Speaks-funded research, conducted by researchers Martin Knapp, Ph.D., of the London School of Economics, and David Mandell, Sc.D., of the University of Pennsylvania, will be presented at the international conference “Investing in our Future: The Economic Costs of Autism,” hosted by Goldman Sachs in collaboration with the Child Development Centre and Autism Speaks, on March 31 in Hong Kong.

The CDC Report

An earlier post mentioned the CDC finding that about 1 in 88 children has been identified with ASD..  CDC has now put the materials online.  The scientific report is here.  The community report is here.  Here are key findss from the latter's executive summary (emphasis added):

Here are the key findings from this report:

• More children were diagnosed at earlier ages—a growing number of them by 3 years of age. Still, most children were not diagnosed until after they were 4 years of age. On average, diagnosis was a bit earlier for children with autistic disorder (4 years) than for children with the more broadly defined autism spectrum diagnoses or pervasive developmental disordernot otherwise specified (4 years, 5 months), and diagnosis was much later for children with Asperger disorder (6 years, 3 months).

• As has been detailed in previous reports, we also found that almost five times as many boys were being identified with ASDs as girls (1 in 54 compared to 1 in 252). Research exploring why there are differences in the identified prevalence among males and females is ongoing and knowing that the conditions are more common among boys can help direct our search for causes.

• The largest increases over time were among Hispanic and Black children. We suspect that some of this was due to better screening and diagnosis. However, this finding explains only part of the increase over time, as more children were identified in all racial and ethnic groups.

• The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability. The largest increases during 2002 to 2008 were among children without intellectual disability (those having IQ scores higher than 70), although there were increases in the identified prevalence of ASDs at all levels of intellectual ability.

The New York Times reports:

C.D.C. researchers did not meet any of the children they judged to have an autism spectrum disorder. The team made the decisions based on evaluations of the children, drawn from 14 states. The estimated rates in those states varied widely, from one in 210 children in Alabama to one in 47 in Utah.

“This is a fourfold difference,” Dr. Éric Fombonne, a psychiatrist at McGill University and Montreal Children’s Hospital, said in an e-mail. “It means that ascertainment is unequal across states. Thus, in the next surveys, as ascertainment will most likely improve where it is currently low, average rates are bound to increase. Is there, in addition to this, a real increase in incidence? It’s possible, but cannot be determined from the study design.”

One in 88

Maggie Fox writes at National Journal:

One in 88 U.S. children have been diagnosed with some sort of autism spectrum disorder, from mild types of Asperger's syndrome to severe disability, the U.S. Centers for Disease Control and Prevention said on Thursday.

CDC said that this is a 23 percent increase in the numbers since the last report in 2009, and at least some of the rise is because more children are being screened and assessed. And more children are being diagnosed by age 3, the report finds.
...

“This information paints a picture of the magnitude of the condition across our country and helps us understand how communities identify children with autism,” HHS Secretary Kathleen Sebelius said in a statement. “That is why HHS and our entire administration has been working hard to improve the lives of people living with autism spectrum disorders and their families by improving research, support, and services.”

CDC reports data from 2008, which show 11.3 per 1,000 8-year-old children have been identified as having an autism spectrum disorder. "This marks a 23 percent increase since the last report in 2009. Some of this increase is due to the way children are identified, diagnosed, and served in their communities, although exactly how much is due to these factors is unknown," CDC said in the statement.

Michigan Mandate to Move to House Floor

The Detroit News reports on Michigan mandate legislation:

"There seems to be an effort to speak ill of federal health insurance mandates while at the same time we're having conversations of state-level mandates," said Dave Jessup, director of government relations for the Small Business Association of Michigan, which opposes the autism bills. "A mandate is a mandate whether it be a federal mandate or a state mandate."

The House Families, Children and Seniors Committee on Tuesday passed  Senate Bills 414, 415 and 981 after lowering the amount the state would reimburse insurers and third-party administrators annually for certain autism therapies.

Lt. Gov. Brian Calley, a Republican whose daughter has autism, said a mandate is necessary to stop a brain drain of autism specialists who get trained in Michigan but move to states with insurance mandates. [emphasis added]

...

"We have no idea how much it's going to cost," said Sen. Phil Pavlov, R-St. Clair Township, who voted against the bills. "It's wide open."

There are an estimated 15,000 children in Michigan with some form of autism, but not all children will require the expensive one-on-one speech and occupational therapy that bankrupts some families, Calley said.

"It doesn't really make sense to expect utilization will always be capped out," Calley told the committee.

The legislation is drawing opposition for different reasons. Business groups oppose the individual mandate, fearing it will drive up insurance premiums on top of new regulations in the federal health care reform law being argued before the Supreme Court this week and open the door to new mandates in the future.

"The question is: 'How do you say yes to some (mandates) and no to others?'" asked Wendy Block, health policy director for the Michigan Chamber of Commerce.

A Parity Argument Against the Michigan Mandate

MLive reports:

Mental health advocates said Tuesday that bills mandating insurance coverage for autism spectrum disorder (ASD) diagnosis and treatment should not have moved forward because they didn't include a provision extending the mandate to all mental health disorders.

Michigan Partners for Parity, a statewide coalition with more than 60 members, issued a press release soon after the three-bill package passed a state House of Representatives committee.
The group advocates for comprehensive mental health coverage, including autism.

"We don't understand why lawmakers won't consider all the facts on this issue," said Mark Reinstein, spokesperson for Michigan Partners for Parity and executive director of the Mental Health Association in Michigan.
...
Lt. Gov. Brian Calley, an outspoken proponent of the autism package, said Tuesday that parity advocates should get involved in the process by getting comprehensive legislation introduced.
But, he noted, adding parity to the existing autism package would likely cause the bills to fail.

Committee members Reps. Maureen Stapleton (D-Detroit) and Dian Slavens (D-Canton) offered amendments that would have expanded the scope of the mandates, but both were voted down.

California Provider Abruptly Closes

A California regional center vendor has abruptly gone out of business. KTLA reports:

A series of Southern California treatment centers for children with autism closed Friday without warning, leaving the parents of the young patients wondering what happened.

Wellspring Health Care and Home Care provided treatment for thousands of children with autism across Southern California until Friday, when its locations shut their doors, apparently for good.

Some employees told KTLA they haven't been paid for a month. Others said they received an email last week informing them they wouldn't be paid Friday.

Those employees traveled to Wellspring's corporate office at 16713 Roscoe Blvd. in North Hills only to find the storefront abandoned, with a sign on the door saying Wellspring is out of business.

Caroline Simha -- the mother of a child with autism -- wonders what she will do now that Wellspring is no longer open.

"When the services are cut, it's like you don't know where to go," she told KTLA.

Wellspring founder and CEO Leo Landeverde [sic:  correct spelling is Landaverde] issued an email to his employees last week saying they wouldn't be paid due to "cash flow problems."

There is now a Facebook group, "Former Clients of Wellspring." 

Last year, a Wellspring employee was a suspect in an abuse case.  Last week, he pleaded guilty.  (Mugshot here.)