Communication Shutdown Day

Lisa Jo Rudy reports:

Tomorrow, November 1, has been set as "Global Communication Shutdown Day." We are encouraged to cease twittering and facebooking for the day in order to raise awareness of and funds for autism - and, to some degree, to simulate the communications challenges faced by people on the autism spectrum. The non-communication is supposed to mirror autistic isolation; the fundraising will take place when you pay for a "charity app" you place on your computer which "spreads the word, gives a shutdown badge to wear online and adds your picture to a global mosaic of supporters, next to the celebs." Information about recipients of you donations can be found on the Global Shutdown Day website.

There is significant opposition to the idea:

Charter Schools for Autism

The Center for Education Reform has a directory of charter schools for special-needs kids.

Information on IDEA funding and charter schools is here.

Below is a list of charter schools specifically for kids on the autism spectrum. If you know of any others -- or have information about the schools on this list -- please get in touch with me at jpitney@cmc.edu

Florida:

• Easter Seals Charter School
• South Florida Autism Charter School
• Florida Autism Center of Excellence
• Hope Center for Autism
• Princeton House Charter School
• UCP of Central Florida
• Palm Beach School for Autism
• Renaissance Learning Academy

Minnesota:

• Lionsgate Academy

New York:

• Child Development Center of the Hamptons
• New York Center for Autism

Ohio:

• The Autism Academy of Learning

Texas:

• Foundation School for Autism (see video below)

Utah:

• Spectrum Academy

Family Activism and MIND

Chuck Gardner writes at The Sacramento Business Journal about the origins of the MIND Institute. Like so many families, they started with worries that a pediatrician could not resolve:

Eventually, we found our way to a specialist in San Francisco and learned our son had a disorder called autism. We were told to go find a nice institution for our son and move on with our lives. Instead, on the trip home, we vowed to exhaust every avenue to find out what the proverbial “they” were doing to treat and cure autism.

We discovered there was no “they” for autism and further, there was no medical treatment, no cure. In fact, autism was considered to be such an impenetrable disorder that it received little funding from the National Institutes of Health, and thereby little attention from the research community.

Two years later, we came together with four other Sacramento families who believed that with a focused scientific effort, we could begin to see into the core biology that underlies autism. Our vision was to create a place where families, researchers, clinicians and educators would partner to mount an unprecedented effort to prevent, treat and cure autism and related disorders. We wanted families like ours to know there was a “they.”

Today there is a “they,” and thanks to the University of California Davis, it is the world-renowned MIND Institute. The team at the MIND Institute is achieving the vision set by the families by making the most significant discoveries in the history of autism and another poorly understood developmental disorder, fragile X syndrome.

When we approached UC Davis with our vision, we found a university that was not only open-minded but willing to take a risk that a few highly motivated families could deliver on that vision. With a “Field of Dreams” spirit, UC Davis built the MIND Institute and “they” came: researchers, clinicians and educators. All are focused on preventing, treating and ultimately curing autism and related disorders.

See here for an April 2006 article by Gary Delsohn providing more detail on MIND's origins.

Autism and College

At The American Thinker, Robert Weissberg writes:

It is not easy being a connoisseur of educational foibles -- just as one is recovering from the latest foolishness, along comes something new, and it's back to the anti-depressants. The latest installment of Educators Gone Wild is the push to enroll the "intellectually disabled" in college. We are not talking about attracting eccentrics; these recruits are youngsters with Down Syndrome, autism, and other disabilities that seriously impede learning. This is college for those stymied by reading and writing.

Eight years ago, a mere four campus programs existed for the intellectually disabled; by 2009, this has soared to 250 in some three dozen states (see here). Predictably, the impetus for this good-heartedness is federal money, and more is forthcoming -- Congress recently appropriated $10.56 million to develop 27 model projects to uncover successful approaches to getting these youngsters into college. Private foundations have also kicked in (federal Pell Grant loans also permit the mentally disabled to pay tuition and thereby acquire debt).

And why should Washington push access at a time when higher education funding in general is hurting? Political lobbying, notably pressures from parents of disabled children, has seen one triumph after another, and access to college is the next agenda item (see here for these groups). This is the "logical" progression of the mainstreaming movement whereby inserting the disabled into regular settings becomes a matter of right regardless of what is accomplished (see here for the legal push).

Though he is usually a very perceptive analyst, Dr. Weissberg paints with too broad a brush here. Autism itself is not an intellectual disability, and many people on the spectrum can indeed do college-level work. Most famously, Temple Grandin earned a Ph.D. in animal science at the University of Illinois, where Dr. Weissberg himself used to teach.

NY Mandate Redux?

The Journal News reports that NY Governor David Paterson might still be willing to sign a mandate:

Paterson also said this morning that he would like to sign legislation for health-insurance coverage of autism. He recently vetoed the bill that was passed by the Legislature, saying it “wrenched his heart” to veto it, but he could not sign anything that did not include funding and amounted to an unfunded mandate. “If the Legislature would come back and appropriate the money, they could resubmit the bill and this time I would sign it,” the governor said.

Autism groups that were for and against the measure lobbied heavily on it. It was sponsored by Sen. Neil Breslin, D-Delmar, Albany County, and Assemblyman Joseph Morelle, D-Irondequoit, Monroe County. Morelle said in a statement that he was disappointed in the veto, which “would have prevented insurers from denying coverage on the basis that treatments are educational rather than medical in their necessity.” He said the legislation “was an opportunity to simply do the right thing for the ever-increasing number of families whose children are diagnosed with autism.”

Groups that opposed it said the requirement that state-regulated insurance companies cover “evidence-based, peer-reviewed and clinically proven” treatment and therapy, a standard that is not required for other medical problems, and would shift the burden to pay for early intervention services from insurers to local governments and taxpayers.

“We appreciate the state Legislature’s concern and interest in providing for increased autism insurance coverage,” Thomas Abinanti, a Westchester County legislator, said in a statement. “We look forward to working with the Legislature to create increased autism insurance coverage that is affordable and cost effective.”

Abinanti, a Democrat running for Assembly, has an autistic child. His Republican opponent is Thomas Bock.

Autism Across the Oceans

The BBC reports that autism can be contentious in the United Kingdom:

New figures from the Department of Health reveal 291 children in Northern Ireland have been delayed beyond the target and that suspected new cases rose by 38% in the 12 months to September.

Health Minister Michael McGimpsey said he hoped all Health and Social Care Trusts would be meeting the target by next March.

The battle for improvement comes amidst friction between the charity Autism NI and one of the key supporters of the Department of Health's strategy, Ken Maginnis, the House of Lords peer.

Funding

The charity interprets an email written by Lord Maginnis to the department three weeks ago was a "threat" to its funding.

According to up-to-date Government figures, it received £320,000 in core and project funding in 2008/9 from the Department of Health and trusts.

Lord Maginnis complained of the charity's "persistently obstructive attitude" - something it has denied - and asked whether it should function "independently of any formal provision."

In Australia, there is a regional gap. The Age reports:

While Melbourne's eastern suburbs have two prep-to-year-12 autism schools, and the Northern Autistic School has campuses in Preston and Jacana, parents say there is nowhere for autistic children in the west after age nine.

''Inclusion into mainstream school does not work for all children,'' says Chris Saunders, of Autism Schools Action. ''This is a human rights issue.''

Yesterday about 20 parents from the group confronted state Education Minister Bronwyn Pike at the launch of the new Laverton campus of the Western Autistic School, to demand the same options in the west as in other parts of Melbourne.

KUAM-TV has a two-part series about autism on Guam:

• Part I
• Part II

Autism Stabilizes in WI Schools

Reuters reports:

Autism rates could be leveling off at just above one percent of children, Wisconsin researchers suggest.

Between 2002 and 2008, they found the number of kids in the state's special education autism category nearly doubled. But the increase was only seen in those schools that started out with very few autistic kids, hinting that the statewide rates may be stabilizing.

...

The new study hints that at least some of the increase could be due to schools putting more and more kids in the autism category, said Matthew Maenner, a PhD student at the University of Wisconsin-Madison, who worked on the new study.

"The prevalence of autism in special education doesn't seem to be the same everywhere, and it doesn't seem to be increasing at the same rate everywhere," he said.

The findings, published in the journal Pediatrics, show that the statewide rate of children receiving special education for autism went from five to nine cases per 1,000 over seven years.

Not all of these kids may have a medical diagnosis of autism, but Maenner said data on enrollment in special education programs are often used as a proxy for the prevalence of disabilities.

Schools varied widely in the number of autistic children they had. But over time, the gap narrowed from a spread of more than 24 times to less than two.

The schools with more than one percent autistic kids at the beginning of the study period saw little or no change.

Dr. John Harrington, an autism expert who was not involved in the research, said it looked as if the autism rate could be stabilizing.

"As you get better at identifying something, your numbers get less varied," he told Reuters Health. "Finally we can look at these kids and say, they are not just odd, they have a diagnosis."

Views of Autism Speaks

Zach at AspieWeb shows video of a protest against Autism Speaks:

I find it very disturbing to watch this video. Here are people who want to be treated equally, who want to be included in society – not research to find a way to selectively abort them and there told the following:

• 2:25 – Are you really that stupid?
• 3:25 – How do you sleep at night?

If your in the Washington DC area November 6th please consider joining the ASAN in protesting Autism Speaks. For more information and coordination ASAN has created a facebook event page – even if your not going to be there please join it and show your support. If your going to be there I have created several items just for occasions such as this – check them out.

At The Huffington Post, Holly Robinson Peete takes a more positive view of the organization:

Parents across the country have banded together and fought to change state insurance laws to end this injustice. In just four years, they have already won the fight in 23 states, and the battle continues (New York's Governor Paterson just vetoed an insurance bill that passed unanimously in the state legislature, making him just the second governor to take this misguided action). They're fighting against some powerful people, including the insurance companies and their lobbyists. They're also fighting against ignorance. You may have read about one notable Senate candidate who mocked the idea of autism coverage -- she used air quotes when she talked about autism. But these parents are smart, they're organized and they're truly inspirational. That's why they're winning.

Autism Speaks has a wonderful advocacy web site, AutismVotes.org (I serve on the organization's board) with information about the insurance reform effort. Check the map and see if your state has done the right thing yet. If not, you'll find out how you can get involved and help make important change happen for people with autism.

Staten Island Rally

The Staten Island Advocate reports on a rally for people with autism:

Last night, their biggest cheerleader was Borough President James Molinaro, who hosted his inaugural “Stand Together for Autism Services on Staten Island,” in the Michael J. Petrides Educational Complex, Sunnyside.

Molinaro told the crowd that this was just the beginning of “a very long, long journey” of letting government know “what we want and what we deserve” in terms of services for those with autism.

...

A critical, but often neglected component noted during the evening, is the care of autistic adults.

“The biggest spike in autism came about 15 years ago and those kids are adults now,” said Dr. Joanne Gerenser, executive director of the Eden II School for Autistic Children. “We recognize early intervention is critical, but what are the effects of time. You’re a kid for 18 years and an adult for 70. The amount of money spent on adult services is inordinate.”

State Sen. Roy McDonald, who proposed an Autism Bill of Rights, said often politicians will use the bad economy as an excuse not to provide services. The only way to combat that, he said, is for parents, advocates and others to stand together to make their voices heard.

“Make sure your cause is addressed by the people in power appropriately,” he said.

Funding right now stands in the way of research and services.

“It’s one of the fastest growing developmental disabilities, but agencies are being asked to do more with a lot less,” said Donna Long, executive director of theG.R.A.C.E. Foundation. “The demand is so great that the needs can’t be met. It’s a very difficult thing to say to a family searching for a service that we have to put their child on a waiting list.”

Autistic children who can’t get spots in programs geared toward them often wind up in places devoted to a wide range of developmental disabilities.

“They are well-intentioned, but they don’t have the expertise,” said Dr. Gerenser.

Autism, the Health Bill, and Medicaid

Bloomberg Business Week reports:

The health law passed in March requires that insurers led by UnitedHealth Group Inc. and WellPoint Inc. begin covering a package of “essential benefits” in 2014. The law doesn’t say what care should be included, leaving that up to the U.S. Department of Health and Human Services. That, in turn, has spurred a lobbying push by advocacy groups for chiropractic care, autism treatments and dozens of therapies.

...

Coverage is still to be determined on “behavioral health” services, which are a concern for people with autism and their families, said Stuart Spielman, senior policy adviser and counsel for the advocacy group Autism Speaks in Washington.

Insurance coverage for autism services vary from state to state, with people with the condition often getting “very poor care,” he said by telephone. Spielman’s 16-year-old son has autism.

Medical costs for people with autism are four to six times greater than for those without the condition, the Atlanta-based CDC estimates. Twenty-three states have adopted laws requiring insurers to cover screenings, therapy and related services, according to Autism Speaks.

Lifetime treatment for autism costs about $306,000, Michael Ganz of the Harvard University School of Public Health estimated in a 2007 report that didn’t distinguish between severe or mild forms.

Autism advocates are lobbying the government to interpret language in the law requiring coverage of “behavioral health” services to include autism treatment.

The Science Blog reports:

Autism was described as early as 1940 [sic: 1943], but a marked increase in the prevalence for the broader class of autism spectrum disorders (ASDs) during the past decade highlights the demand for treatment of affected individuals. The Centers for Disease Control and Prevention (CDC) reported that the prevalence of ASD was one in 110 children in 2006 and increased at an average annual rate of 57% between 2002 and 2006.1 The rising prevalence has heightened concern about the financial impact of treating ASDs in the private and public health care systems.[1]

The escalating health care expenditures associated with autism spectrum disorders (ASDs) in state Medicaid programs is the subject of a study by Penn State College of Medicine researchers in the November issue of the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP).[2]

In the article titled "Health Care Expenditures for Children with Autism Spectrum Disorders in Medicaid," Drs. Li Wang and Douglas Leslie used Medicaid data from 42 states from 2000 to 2003, to evaluate costs for patients aged 17 years and under who were continuously enrolled in fee-for-service Medicaid. Total expenditures included Medicaid reimbursements from inpatient, outpatient, and long-term care, as well as prescription drugs, for each treated patient.

During the study period over two million children were diagnosed with some type of mental disorder. Of these children, nearly 70,000 had an ASD, with approximately 50,000 having autism. Researchers found that total health care expenditures per child with ASD were $22,079 in 2000 (in 2003 US dollars), and rose by 3.1% to $22,772 in 2003.

Strikingly, the increase in the treated prevalence of autism was higher than in any other mental disorder, rising by 32.2% from 40.6 to 53.6 per 10,000 covered lives. Total health care expenditures for ASDs per 10,000 covered lives grew by 32.8% from $1,270,435 in 2000 (in 2003 dollars) to a remarkable $1,686,938 in 2003.

More on the Paterson Veto

The Greece Post reports:

Assemblyman Joseph D. Morelle, D-Irondequoit, today said he is “deeply disappointed” that Gov. David Paterson has vetoed a landmark bill that would have extended health care coverage to families affected by autism.

“This was an opportunity to simply do the right thing for the ever-increasing number of families whose children are diagnosed with autism,” said Morelle, chairman of the state assembly’s Committee on Insurance and the bill’s primary sponsor.

“As insurance chairman, I am always wary of adding new mandates and costs to a health care system that’s already too expensive,” Morelle said. “But parents who pay health care premiums and are dealing with this diagnosis should not be told that treatments for their children are out of reach.”

The Age of Autism applauded the veto:

The bill would have repealed existing anti-discrimination language hard won in 2006, and required that any treatment for autism meet a standard far higher than that required for any other health condition under New York law, or in any other state. “This standard if passed was so onerously high that we could identify no treatments that we were certain would be covered,” said Marcia Roth, a Budget and Policy Analyst with the Autism Action Network, “And it would have created a dangerous precedent that could serve as a model for other states.”

“Costs currently paid by insurers would have been shifted to county and school district taxpayers, said Tom Abinanti, a Westchester County Legislator and Democratic candidate for Assembly in the 69th district (Greenburgh, Pleasantville and parts of Yonkers).

A coalition of more than 30 autism organizations (HERE) had been working to pass another bill, A6888, last year when S7000b was suddenly announced at an Albany at which the only non-legislative people present were representatives of Mannatt, Phelps and Phillips, a national lobbying firm, who represents more than 100 insurance companies, hired by Autism Speaks to lobby on their insurance efforts. Persons familiar with Autism Speaks lobbying efforts confirmed that Manatt was paid at least $100,000 by Autism Speaks.

Autism Speaks denounced the veto:

Autism Speaks joined with tens of thousands of families and advocates across New York State to express extreme disappointment in Governor David Paterson’s veto of landmark autism insurance reform legislation – passed unanimously by the state legislature – and challenged the cost projections cited by the governor in justifying his decision. The organization immediately began conferring with key legislative allies to determine a course of action, which could include a call for a post-election session of the legislature and an override effort.

“Today is a sad day for tens of thousands of people with autism and their families, the result of a misguided fiscal decision that will actually cost taxpayers untold millions of dollars in the coming years,” said Bob Wright, co-founder of Autism Speaks. “This is a significant setback, but it is far from the end of the battle. We will not stop fighting until every child with autism in New York State has access to the treatments they need and deserve.”

...

The governor’s veto memo stated that his decision was based purely on fiscal considerations and not the legislation’s merits. The memo, though, cited inaccurate costs projections. Actuarial reports have concluded that the actual costs to the state and local municipalities would be negligible during the first year and no more than $30 million once fully implemented. Moreover, private insurance policyholders would see minor premium increases of less than 0.65% – far less than the inflated figures included in the memo.

WHEC in Rochester reports:

Paterson Vetoes Autism Mandate

New York Governor David Paterson has vetoed legislation mandating insurance coverage.

Politics on the Hudson reports:

Paterson, who has about two months left in his term, wrote that he is “extremely sympathetic to the very real struggles faced by families of individuals” with autism spectrum disorder, which he said is a priority for society to address. Autism spectrum disorder, which occurs in roughly one out of every 100 kids, is characterized by difficulty with speech and social interaction and repetitive behavior patterns. Symptoms vary depending on where children are on the spectrum .

“It will be a subject of my continued advocacy as a private citizen. But now I am governor, and I cannot sign a bill that would impose costs that the Legislature does not fund,” Paterson wrote.

The bill has been the subject of intense lobbying by autism advocates who support and those who oppose the legislation. It was sponsored by Sen. Neil Breslin, D-Delmar, Albany County, and Assemblyman Joseph Morelle, D-Irondequoit, Monroe County.

Opponents said it would hurt people seeking treatment for autism because of the “evidence-based, clinically proven and peer-reviewed” standard, which is not required for other medical problems, and would shift costs from insurance companies to counties and taxpayers for early intervention services.

The governor said another flaw in the bill is it would require the state Health and Insurance departments and a few other state agencies to develop regulations for health insurers within a year and update them regularly, but the state budget does not provide them with the extra resources they would need to do this.”

Image of veto message is below (click to enlarge)

Paterson Facebook Update

Now we know how activists hijacked Governor Paterson's Facebook page. From Adrants:

In a stunt that spelled out "Sign the Autism Bill," several BBDO staffers successfully letter bombed New York Governor David Paterson's Facebook page. Apparently, they want the Governor to act on the bill. To accomplish the stunt, BBDO employees Jeff Greenspan, Chris Baker and Danny Adrain out together a site called Letter Bombing with instructions on how to letter bomb any Facebook page.