Monday, October 31, 2011

Marine Recruit with ASD Appeals Court-Martial

Michael Doyle reports at McClatchy Newspapers:

Los Angeles native Joshua D. Fry had been diagnosed as autistic and was living in a group home for people with mental disabilities when a Marine Corps recruiter signed him up for service.

Fry's enlistment three years ago helped the recruiter meet his quota. It turned out far worse for Fry, who ended up being court-martialed on child pornography and other charges. Now his fate is posing a mind-boggling question for military judges:

Was Fry never really in the Marine Corps in the first place?

Citing his autism and a reported IQ of 70, Fry's attorneys say he lacked the mental capacity to enter into an enlistment contract. If they're right, it means that Fry wasn't a Marine even while attending boot camp and infantry school. He always was a civilian, immune to military prosecution.

Fry's "enlistment contract was void, (so) he was never subject to court-martial jurisdiction," Navy Lt. Cmdr. Brian L. Mizer, Fry's attorney, declared in a legal brief.

The blog of the National Institute of Military Justice offers more legal detail:

The appellant’s brief sets forth a sad history of appellant’s upbringing, many run-ins with law enforcement and social services agencies, and the eventual appointment of a limited conservatorship. This history forms the basis for the appellant’s incapacity to contract and therefore incapacity to enlist. The brief challenges the N-MCCA’s finding that the appellant retained the right to enter into contracts under the conservatorship as an inaccurate interpretation of California law, and cites federal firearms prosecutions for the principle that federal courts should look to state law determinations of capacity.

The government’s brief restates the position that the appellant retained the capacity to contract under state law, but also argues that a state cannot bind the federal government’s authority to enlist under the provisions of Article 2, UCMJ. The government then parses the Article 2 standard (summarized as: enlist voluntarily and have the capacity to understand the significance of the enlistment) to support the position that the appellant had the capacity to enlist, or that his conduct resulted in a constructive enlistment.

In the reply brief, the appellant attacks the government’s position through analysis and interpretation of 10 U.S.C. § 504 and 505, which list disqualifications from enlistment.


Sunday, October 30, 2011

State Services for Children

The Journal of Disability Policy Studies has an article by Kelly Henderson, "Policies and Practices Used by States to Serve Children With Autism Spectrum Disorders." The abstract:
There has been swift growth in the number of children and youth identified with autism and autism spectrum disorders (ASD) and who receive services through U.S. early intervention and special education systems. This growth, coupled with the intensive and unique needs of this population, has prompted many state agencies to implement policies and practices to improve delivery of services to children with ASD. The results of a national survey of Part C and Part B agencies under the Individuals with Disabilities Education Act show that most Part B and many Part C agencies are engaged in initiatives specific to ASD. Professional development, technical assistance, and direct services to children with ASD are the most common approaches used. Case studies of five states’ efforts detail the nature of the ASD initiatives and the use of specific approaches within their state settings.

A New Book

A new edited volume on autism -- full text available online -- contains valuable perspectives from Iran, Africa, and other places across the globe.
A Comprehensive Book on Autism Spectrum Disorders, edited by Mohammad-Reza Mohammadi

The aim of the book is to serve for clinical, practical, basic and scholarly practices. In twentyfive chapters it covers the most important topics related to Autism Spectrum Disorders in the efficient way and aims to be useful for health professionals in training or clinicians seeking an update. Different people with autism can have very different symptoms. Autism is considered to be a “spectrum” disorder, a group of disorders with similar features. Some people may experience merely mild disturbances, while the others have very serious symptoms. This book is aimed to be used as a textbook for child and adolescent psychiatry fellowship training and will serve as a reference for practicing psychologists, child and adolescent psychiatrists, general psychiatrists, pediatricians, child neurologists, nurses, social workers and family physicians. A free access to the full-text electronic version of the book via Intech reading platform at http://www.intechweb.org is a great bonus.
Two chapters are of particular interest to those who follow public policy:
  • "The Financial Side of Autism: Private and Public Costs," by Deanna L. Sharpe and Dana L. Baker. "This article reviews what is currently known about the type, amount, and distribution of autism-related financial costs relative to family and society. Estimates of the broad social costs of autism are compared. Components of the financial burden on family members are examined. Current avenues to sharing some of this financial burden with the public and private sector are reviewed. The article concludes with recommendations for future research."
  • "Autism Spectrum Disorders and the Criminal Law," Ian Freckelton." This chapter explores issues arising in the criminal law for persons with the Autism Spectrum Disorder that most often arises in criminal law proceedings: Asperger’s disorder, often described as high functioning autism. It does so by analysing recent court decisions in a number of countries and reflecting upon the extent to which expert evidence is enabling courts to evaluate effectively the ramifications of the disorder within the context of determining criminal responsibility and culpability."

Saturday, October 29, 2011

Employment and Adults with Autism

At HealthDay, Amanda Gardner reports:

"What we're seeing now is this group of adults with the autism diagnosis who have been more empowered and supported than ever before, but they're leaving behind the school structure and special-ed structure," said Scott Standifer, a clinical associate professor at the University of Missouri's School of Health Professions. "The system of adult disability support is very different, so they're having trouble figuring out and making that transition. The world of work is not the same as the world of school."

The result? People with autism have higher rates of unemployment and, when they do work, tend to earn less.

According to a fact sheet compiled by Standifer based on data from the U.S. Bureau of Labor Statistics and other sources, less than one-third of people with a disability aged 16 to 65 were working in 2010, compared with about two-thirds of people without a disability. And people with autism were only about half as likely to be working as people with disabilities in general (33 percent compared with 59 percent). [emphasis added]

One study found that almost 40 percent of young adults with autism get no medical, mental health or case management services to help them make the transition into adulthood. [ABSTRACT HERE]


Friday, October 28, 2011

Rubio on Autism

Daniela Foley writes at the Autism Speaks blog:
The inaugural Puzzle Pieces of Our Community event was held to honor those individuals and corporations who have supported the autism community. The main honoree and keynote speaker was Senator Marco Rubio who gave an incredible address about his experience with autism both politically and personally. He spoke about his involvement in the process of passing insurance reform here in Florida. He touched on his personal connection through members of his staff with children on the spectrum. I think the most impactful part of his address was his passion for wanting to take swift and bold action because of the staggering number of people in the United States living with autism in the United States today. He is resolute in his desire to ensure that we take notice as a nation as the disorder will impact us as a nation. (I’m not sure we could have written it better if we did his speech ourselves). He moved everyone in that room.

Thursday, October 27, 2011

Kaiser Report on Medicaid

The Kaiser Family Foundation has a new report on Medicaid. Some passages relevant to people with autism and to the broader disability community:
Medicaid serves multiple roles in the health care system. Medicaid provides health coverage and long-term care services and supports for nearly 60 million low-income Americans including 29 million low-income children, 15 million adults and 15 million elderly and people with disabilities.
...
Half of Medicaid enrollees are children, but most Medicaid spending is for the elderly and people with disabilities. About three-quarters of the beneficiaries served by the program are children and non-disabled adults, mostly parents. The elderly and people with disabilities represent just one-quarter of the share of program enrollees, but account for nearly 70 percent of program spending because these groups tend to have higher utilization of acute and may use long-term care services (Figure 4). In fact, Medicaid data show that just five percent of Medicaid enrollees account for more than half (57 percent) of program spending.
...
This year’s survey found that states are continuing to work on reorienting their Medicaid LTC delivery systems towards more community-based services. States’ efforts to expand HCBS options for LTC are driven by consumer demand, the United States Supreme Court decision in Olmstead v. L.C. in June 1999 that stated that the unjustified institutionalization of people with disabilities is a violation of the Americans with Disabilities Act, and an effort to control LTC costs which represent a third of total Medicaid spending.

Wednesday, October 26, 2011

Abuse Allegation in Texas

Courthouse News Service reports:
The year after Texas promised the U.S. Justice Department it would end abuses at its state-run homes for the disabled, a state employee beat an autistic man to death in a state care center, where nurses failed to check his vital signs for two days "as he lay dying from internal injuries," the man's parents say.

Larry Taylor and Pamela Varnell sued the Richmond State Supported Living Center in Federal Court on behalf of the estate of their son David Taylor.

The Richmond State Supported Living Center aka The Richmond State School is one of 13 such facilities operated in Texas by the Texas Department of Aging and Disability Services.
...
"Due to his disability and his resulting inability to communicate, David was unable to complain to anyone if he was being abused or neglected, or whether or not he needed medical treatment."

His parents seek damages under the Rehabilitation Act and the Americans with Disabilities Act.

The late David Taylor was born prematurely at 26 weeks, and his disabilities were so severe "he never learned to speak or to communicate in any reliable way," his parents say. He was diagnosed with "severe autism and profound mental retardation," and admitted to the Richmond State School when he was 22 years old.

New Documentary on Disability Rights

A new documentary premieres tomorrow on PBS:
People with disabilities are one of the largest minorities in the United States. But for most of American history, they occupied a sub-class of millions without access to everyday things most citizens take for granted: schools, apartment buildings, public transportation, and more. Some were forcibly sterilized under state laws. Others were committed to horrifying institutions where they were left and forgotten.

After World War II, however, things began to change, thanks to a small group of determined people with an unwavering determination to live their lives like anyone else, and to liberate all disabled Americans of the limitations their government refused to accommodate.

Lives Worth Living traces the development of consciousness of these pioneers who realized that in order to change the world they needed to work together. Through demonstrations and inside legislative battles, the disability rights community secured equal civil rights for all people with disabilities. Thanks to their efforts, tens of millions of people's lives have been changed.

This film is an oral history, told by the movement's mythical heroes themselves, and illustrated through the use of rare archival footage. The story features Fred Fay, who suffered a spinal cord injury at age 17 in 1961, and simply refused to be relegated to life’s sidelines just because he couldn’t walk. He fought tirelessly for decades for equal rights, access, and opportunity for the disabled, including advocating for programs allowing the disabled to live independently. (Fred died August 20, 2011; the film is dedicated to him.) Also featured is Ed Roberts, who founded the independent living movement in Berkeley and is also considered a father of the disability rights movement.

Tuesday, October 25, 2011

The "60 Minutes" Story on Tablets and Autism

The "60 Minutes" story on "Apps for Autism" has gotten a good deal of attention in the community.

Text here. Video below:

Waiting in Indiana

The Herald-Bulletin (St. Anderson, IN) reports:
Indiana families of children with autism are facing years-long wait for access to state services, a wide geographic disparity in care, and shrinking resources for those children when they become adults.

That grim assessment was offered Monday to the Indiana Commission on Autism, a legislative study group charged with making recommendations for how to improve care and services for more than 40,000 Hoosiers who have been diagnosed the disorder.

“Our need for services far outstrips the resources that we’ve devoted to this as a state,” said John Dickerson, executive director of The Arc of Indiana advocacy group.

Most pressing may the long wait for access to the state’s Medicaid-waiver programs, designed to keep people with disabilities from being institutionalized. There are now more than 19,000 people on the Medicaid-waivers list, waiting an average of 10 to 12 years to access federal Medicaid funds to help them offset the cost of in-home or community-based care.

More than 5,500 people on the list are individuals diagnosed with autism.

Monday, October 24, 2011

Restraint, Seclusion, and the Education Bill

Disability Scoop reports on the absence of the restraint issue from the ESEA reauthorization:

Despite efforts to address restraint and seclusion of students with disabilities within an overhaul of the nation’s primary education law, the issue was left out when the U.S. Senate moved forward on a bill this week.

Last year, when proposed legislation to curb the use of restraint and seclusion in schools fell apart, Sen. Tom Harkin, D-Iowa, who chairs the U.S. Senate’s education committee signaled his intention to address the issue in a reauthorization of the Elementary and Secondary Education Act, or ESEA, which is also known as No Child Left Behind.

But on Thursday, Harkin’s committee approved a bill to update ESEA that includes no mention of restraint and seclusion. The reason: Harkin said he was not able to get bipartisan support on the issue. (Read all of Disability Scoop’s coverage of restraint and seclusion >>)

Now, the senator says he hopes to add provisions related to restraint and seclusion when the legislation is considered by the full Senate.

Sunday, October 23, 2011

Autism in Modesto

The Modesto [CA] Bee reports:

The number of children with autism has skyrocketed. Modesto City Schools serves nearly seven times as many children today as the district did eight years ago.

Stanislaus County as a whole has had slightly less than a fivefold increase.

No one knows what causes autism. Also unknown is if its phenomenal growth is because of better and broader diagnosis of autism, or a growing risk.

"It's both, quite likely," said autism expert Irva Hertz-Picciotto. She is deputy director of the Children's Center for Environmental Health at the University of California at Davis.

Symptoms typically are evident by the time children are 3. Autism affects boys three to four times more often than girls.

Hertz-Picciotto was the lead author of a study published in 2010 that found a cluster of autism cases born in north and east Modesto. The study noted more cases were found near autism treatment centers. The Central Valley Autism Project is at Orangeburg Avenue and Oakdale Road in east Modesto.

The study also concluded that well-educated parents, older parents and those who were not Latino were most likely to have children with autism. All of those, it said, most likely point to more access to quality health care and a better chance of diagnosis.

"Parents fight for an autism diagnosis, because with an autism diagnosis there is hope," said Ginger Johnson, head of Modesto City Schools' special education programs.



Articles in the Scranton Times-Tribune

Today's Scranton Times-Tribune has a number of articles on autism:

Prevalance is rising. Pennsylvania Department of Welfare's Bureau of Autism Services reckons that between 25,000 and 30,000 state residents are on the spectrum.

Meanwhile, the commonwealth is among the states the CDC monitors through its Autism and Developmental Disabilities Monitoring Network. The network's most recently published surveillance year, 2006, estimated that 8.4 per 1,000 children in Pennsylvania had an ASD, a 58 percent increase in total prevalence, from 1 in 190 children in 2002 to 1 in 120 children in 2006.

That's among the lower prevalence rates among the represented states, said Jon Baio, epidemiologist with the CDC's National Center on Birth Defects and Developmental Disabilities and principal investigator for the ADDM. Specifically, one of the factors influencing the numbers is that the ADDM doesn't have access to children's educational records in Pennsylvania, he said.

That said, the state is progressive on the policy end, Mr. Baio said. "A lot of programs have been added there in recent years. That bodes well for children with autism," he said.

Screening is a problem, as pediatricians in the area are lagging.
A study by the Commonwealth Medical College shows less than one in 10 autistic children locally are diagnosed by pediatricians or family doctors at a well-baby visit. The study also found that children who are diagnosed during a well-baby visit are generally younger than children diagnosed by a specialist.
Early diagnosis is extremely helpful, but one story tells of an adults who fared better after getting a diagnosis later in life.

Parents have to be watchful in dealing with school districts.

"Red flags" that could indicate to parents that their children are not receiving necessary services include problems contacting school district representatives or feeling like the individualized education program, or IEP, does not meet the students' needs, [attorney Drew] Christian said.

"The non-responsive school district is a big reason why (parents) should be concerned," he said. "That's probably the biggest thing. If they are looking at the school district's evaluation (of the child) or IEP and at the end of the document they can't say, 'This looks like my kid,' then something is wrong in the evaluation."

Pennsylvania has an insurance mandate.

Signed into law on July 9, 2008, the Autism Insurance Act requires certain private health insurance plans to cover the cost of diagnostic assessment and treatment of autism spectrum disorder for children and adolescents under 21, according to state Department of Public Welfare.

"Pennsylvania was one of the first to pass a comprehensive autism insurance act," said Nina Wall-Cote, director of DPW's Bureau of Autism Services. "Prior to this, many insurance companies had an autism exclusion."

...

But the act only requires private insurers to cover up to $36,000 in autism treatment each year, and it does not apply to self-funded, employer-provided insurance plans or for plans covering less than 50 employees.

If an autistic child is covered under an excluded plan, or if the cost of treatment exceeds $36,000 in one year, "medical assistance is the safety net," Mrs. Wall-Cote said.

People qualify for the medical assistance program, also called Medicaid, through income guidelines, Mrs. Wall-Cote said.

And in cases involving autism, "the child's income is used (in applications for) Medicaid coverage," she said. "The parents' income is not looked at."

And a story profiles an advocacy group, Parents Loving Children through Autism (PLCTA).

Saturday, October 22, 2011

Inland Regional Center Must Pay

Previous posts have discussed the problems of the Inland Regional Center in California. Jim Miller updates the story at The Riverside Press-Enterprise:

The nonprofit agency that serves developmentally disabled residents in Inland Southern California improperly spent almost $10 million and must repay the state, according to a highly critical audit released Friday that found continued widespread problems at the San Bernardino-based Inland Regional Center.

The audit also concluded that Southwestern Transportation Management Services, a Corona firm, improperly received a contract worth nearly $1 million and must pay back the regional center, which will send the money on to the state.

The Department of Developmental Services report, months in the works, is the latest and hardest hitting assessment of the operations at Inland Regional Center, the largest of 21 nonprofit agencies that contract with the state to arrange therapy, transportation, housing and other services for developmentally disabled people.



A Treaty on Mercury?

Maria Cheng writes at Business Week:

Scientists are warning officials negotiating a global treaty on mercury that banning the deadly chemical completely would be dangerous for public health because of the chemical's use in vaccines.

The ban option is one of several proposals on the table for a meeting later this month in Nairobi, but a final treaty isn't expected until 2013.

...

The problem is that a proposed ban might include thiomersal [US spelling is thimerosal -- ed.], a mercury compound used to prevent contamination and extend the shelf life of vaccines, many scientists say. It is used in about 300 million shots worldwide, against diseases including flu, tetanus, hepatitis B, diptheria and meningitis.

"Not being able to use mercury is not a viable option," said David Wood, a WHO vaccines expert.

Wood said there isn't a viable alternative to thiomersal at the moment. If banned, pharmaceuticals would likely have to switch to preservative-free vaccines, which would complicate the supply chain and vaccination campaigns in poor countries, since the injections would have a much shorter shelf life. Costs would also spike since manufacturers would need to reconfigure their factories.

In 2009, the United Nations Environment Programme, or UNEP, began working on a legally binding global treaty on mercury. At the end of October, the third of five meetings to hammer out a treaty will take place in Nairobi.

"The document is a draft at the moment, so some of these proposals have to be taken with a grain of salt," said Tim Kasten, head of the chemicals branch at UNEP. Kasten said the amount of mercury in vaccines is so minute it doesn't threaten the environment. He said there could be provisions to allow mercury for certain uses, such as in dental fillings and vaccines.

But according to an annex in the draft document, there is currently no "allowable use exemption" for mercury products in pharmaceutical products, putting vaccines in the same category as banned mercury-containing paints and pesticides.

"That would be a terrible idea," said Paul Offit, an infectious diseases expert at the University of Pennsylvania. "It would be another tragic example of us not being able to explain to the public where the real risk lies."

Helen Branswell writes at The Canadian Press:
In some developed countries — Canada, the United States, the countries of Western Europe — thimerosal is no longer used in most pediatric vaccines. That shift was a response to concerns — since discounted — that with the high number of vaccines young children get, the cumulated exposure to thimerosal might pose a health risk.

Anti-vaccine activists also blamed thimerosal in childhood vaccines for rising levels of autism. But a Canadian study actually showed autism rates did not decline after thimerosal was removed from the vaccine formulations.

Canada has filed a position paper on the issue with the UNEP. While it says thimerosal will be phased out of vaccines used in Canada when safe alternatives are available, it believes there is no "legitimate safety reason to avoid the use of thimerosal-containing products for children or older individuals, including pregnant women."

The real impact of barring thimerosal use in vaccines would be felt in the developing world, the WHO and others said.

"The challenge in the rest of the world is that switching to single dose vaccines is going to make the logistics of vaccine delivery much more difficult," said Dr. Allison McGeer, an infectious diseases expert at Toronto's Mount Sinai Hospital.

"Most vaccines we have require a cold chain, so you have to keep them cold. That is already difficult to do in many countries. It's even more difficult to do if you increase the volume of the things you have to keep cold."

Friday, October 21, 2011

Disabilities and the Occupy Movement

People with disabilities are part of the Occupy movement. A posting about an event tomorrow:
I’m organizing a Disability Community day of Occupy Pittsburgh this Saturday 10/22 from noon to 5:00pm. I’m finding an issue that probably falls into this Workgroup: If we want participation from the Deaf community, we need to have the capacity to provide interpreters. We either need volunteers or to have some capacity to pay interpreters. Of all the different communities that make up the Disability Community - the Deaf community is the most marginalized because of their language-minority status. (Short rant - why isn’t ASL the first “foreign” language that everyone takes in school?) So - volunteers and / or some financial capacity to get interpreters when needed. Paul O’Hanlon, 5:56pm Oct 19, FB group for members of marginalized communities at Occupy Pittsburgh.
Martina Robinson writes at The Disability Examiner:
On Tuesday, October 18th, the Organizer's Forum had its monthly meeting. This meeting is a chance for people with disabilities (PWD) to talk among themselves about an issue. This month's topic was the Occupy Movement. Organizers Rachel Siler of Chicago, Nadina Laspina of New York City and Marg Hall of the Bay Area were the main speakers. The audience was about 40 people in total on the conference call.
...

[Laspina] said that a lot of people with disabilities in New York come from other oppression struggles. Disabled In Action, the New York City group, has always joined in marches for issues as divergent as single-payer healthcare, the environment, or gay, lesbian, bisexual, transgender (GLBT) pride. She cited the Occupy Movement as "a golden opportunity for all oppressed groups to coalesce" and urged the disability rights movement to "be bold" in any demands it makes as a result of the Occupy Movement. She added that a group of PWD from New York City attends Occupy Wall Street every Sunday from noon to 4 PM and welcomes visitors

Thursday, October 20, 2011

Isakson Amendment Goes Down

Education Week reports on the rejection of the Isakson amendment:

The Senate education committee rejected an effort today to change assessments and standards for students with disabilities, as it marked up a bill to renew the Elementary and Secondary Education Act. It also debated student achievement goals and turnaround options for schools that fall into the bottom 5 percent of student performance.

Meanwhile, the bill's sponsors, Sen. Tom Harkin, D-Iowa, the chairman of the committee, and Sen. Michael B. Enzi, R-Wyo., reached an agreement with Sen. Rand Paul, R-Ky., so that action on the bill could move forward. Paul withdrew his procedural objections to the legislation and let the committee debate it during normal hours after Harkin and Enzi agreed to hold a hearing on the legislation. That Nov. 8 hearing will take place after the bill is reported out of committee—but before it goes to the Senate floor.

On its second day of markup on the bill, the committee voted 14 to 8 to reject an amendment by Sen. Johnny Isakson, R-Ga., that would have required that schools spell out how students with disabilities would be assessed under their individualized education programs, or IEPs. That would be a huge change from current law, where just a certain percentage of students in special education can take alternative assessments. Disability advocacy groups were strenuously opposed to the amendment. Isakson said the amendment would ensure that students are assessed appropriately, but Harkin, who has family experience with those with disabilities, worried kids wouldn't be challenged. [emphasis added]


Wednesday, October 19, 2011

More on the Isakson Legislation

WMAR in Baltimore reports on the Isakson legislation on education for the disabled:



At Wrightslaw, Sue Whitney argues:
[The legislation] would discriminate against student with disabilities by allowing schools to significantly lower the academic expectations for students with disabilities, based on their scores in state accountability tests.

This use of this test, for this purpose, would apply only to children with disabilities. S 1571 would provide additional remediation to a student who scored poorly on the state accountability test, unless that child had a disability.

The first rule of evaluation is to use a test for the purpose for which it was designed. The state accountability tests were designed to assess what a child had been taught, not what the child is able to learn. IDEA already has provisions in place to provide an alternative or modified curriculum for children who are unable to learn the regular education curriculum. These decisions are made based on valid assessments and by the child’s IEP team.

Tuesday, October 18, 2011

Opposition to an Education Bill

The Consortium for Citizens with Disabilities is opposing provisions in S. 1571, legislation by Senator Johnny Isakson (R-GA). Here are excerpts from the group's letter to the Senate HELP Committee:
While everyone agrees that the No Child Left Behind Act (NCLB) needs revisions, certain key provisions have created a greater level of transparency about the achievement of our nation’s students and must remain as a part of ESEA. One such provision, about which there is widespread agreement, is subgroup accountability; namely, the requirement that states, districts and schools disaggregate data by specific categories of students, including students with disabilities. This disaggregation includes participation in, and performance on, state assessments and graduation rates. This disaggregation requirement has provided information about student participation, achievement and graduation that is critical to students, parents, educators and communities. Access to these data – and the accountability provisions that accompany it – has resulted in greater emphasis on student populations that have traditionally been underserved. While gaps remain, this progress has been important and must continue. Unfortunately, if enacted, S. 1571 would reverse much of this progress. Thus, the undersigned groups urge you to reconsider the policies in S. 1571 because they will negatively affect students with disabilities in the following areas:

This legislation would allow states to administer different assessments – either an alternate assessment based on alternate academic achievement standards or an alternate assessment based on modified academic achievement standards – to any number of, or quite possibly all, students with disabilities. For purposes of accountability, it is important to note that both of these alternate assessments are different from the general education assessment. This is important because when a student with a disability takes a different assessment than a student without a disability, there is no way to compare their performance, no way to accurately measure achievement gaps and no way to know how well they have grasped the grade-level content. If large numbers or possibly all students with disabilities are given alternate or modified assessments, we will effectively – and under the proposed language – legally create a separate education system for students with disabilities.

Monday, October 17, 2011

Autism Society: An Interview

Scott Badesch, president of the Autism Society, speaks to Maine Public Broadcasting:

Low Birth Weight and Autism

MedPage Today reports:

Children weighing less than 2,000 g (4.4 pounds) at birth may be more prone to autism spectrum disorders, a population-based study suggested.

The estimated prevalence of autism spectrum disorders reached 5% in a regional low birth weight cohort, Jennifer A. Pinto-Martin, PhD, MPH, of the University of Pennsylvania in Philadelphia, and colleagues found.

That screen-detected prevalence was five times higher than expected from the general population, the group noted in the November issue of Pediatrics

The CDC reported a 0.9% prevalence among 8-year-olds across the United States in 2006.

"This prospective study, using rigorous diagnostic procedures, confirms that the rate of autism spectrum disorders is elevated among low birth weight/preterm survivors," the researchers wrote in the paper.

That low birth weight and prematurity put children at risk of cognitive and motor disability has been well established, but their link with autism spectrum disorders was largely through retrospective studies and those that screened without diagnostic confirmation, the group noted.

Amanda Gardner writes at USA Today:

Although researchers have yet to confirm a cause-and-effect relationship between low birth weight and autism, the new findings may help explain the recent increase in the ASD rate in the U.S., Pinto-Martin says.

"The number of children with a diagnosis of autism is on the rise and [we] haven't been able to explain why," she says. "It's partly a function of awareness and better diagnosis, but we do a better job of keeping tiny babies alive and this may be one consequence of that." [emphasis added]


Sunday, October 16, 2011

Achievements with Asperger's

Peter Eichler has lived with Asperger's Syndrome, a mild form of autism, for years - even before he had a name for his condition. His experiences and subsequent triumphs led him to found Adam 2 Adam, a non-profit organization intended to promote awareness of autism spectrum disorders and provide mentoring to young adults with Asperger's and other autism-related conditions.

The 43-year-old non-profit founder recently faced a new challenge - developing a stand-up comedy routine. Eichler has been given the opportunity to perform at New York City's Gotham Comedy Club. While people with Asperger's Syndrome are often very serious, Adam 2 Adam encourages creativity, relaxation, and humor as a form of therapy - so Eichler felt that his stand-up debut would be leading by example.

Chris Cragwick isn't that different from any other student. He likes listening to music and watching old "Walker, Texas Ranger" episodes on YouTube.

"No show has had fight scenes with surround sound," he says. "But that show does."

The thing that makes Cragwick just the slightest bit different from other students is the fact that he has autism. It's only noticeable when he takes long pauses, combing his fingers through his beard while he thinks of what to say. He doesn't make eye contact too often, but when he does, it's easy to see his bright blue eyes.

Despite his condition, Cragwick doesn't consider himself disabled. He's held jobs before and is getting his bachelor's degree in English. He's even written several book-length stories.

"It's hard to think of things I can't do," he says.

At a Neuro Networking Club Meeting Saturday, Cragwick sat in a dark room with other members of the group. The fluorescent lights made a buzzing sound that bothered members with hypersensitivity, so they turned them off.

Most of the members arrived at the meeting with club organizer Anna Olsonoski, who drives members to and from meetings. The goal of the meeting was to set up the group's calendar of events, with members' input. Members decided they'd spend their next meeting volunteering at Animeals, an animal shelter and pet food bank.

...

"It's basically giving a good name to autism," Olsonoski said.


The Stirling Observer (UK) reports:

FOR many people, leaving behind the comforts of home to work as a volunteer in Namibia would be a daunting prospect.

But for Stirling University student Robbie Newton (20), who has Asperger syndrome, the 17,880 kilometre round trip to the city of Windhoek to teach local children will be “the biggest challenge of my adult life”.

...

People with the condition often prefer predictable routines that help them feel secure and make sense of the world around them. An estimated 50,000 Scots have autism, with nearly 400 thought to live in Stirling.

Adventurous Robbie is on track to raise the £500 online he will need to make the journey. When he arrives in the Namibian city of Windhoek in August 2012, the Joint Honours Sociology and Criminology student will be rolling up his sleeves and helping with painting, gardening and general local village maintenance, as well as teaching children at the local village summer school.

Today Online (Australia) reports:
They sound like any indie rock band. Unlike other bands though, five of the six members in Melbourne-based Rudely Interrupted have a range of medical disabilities, including Asperger's Syndrome, Down's Syndrome, epilepsy, deafness and blindness.

But that doesn't mean you should diss their ability, said lead singer/guitarist Rory Burnside. Said the 24-year-old: "It's wrong to automatically assume that these people are disabled so they're going to be no good."

Talking with Burnside at the M Hotel - the band was brought in to Singapore by Leo Burnett & Arc Asia Pacific to perform at the Spikes Asia Awards after-party last month - it's his personality you're most engaged by. In particular, his rather wicked sense of humour.

"I was born on May 2," he announced when we met. "Should've been born in the middle of April though. I'm trying to make up the two weeks I was late. For example, if the traffic light's on orange, I like to just go through, because I'm trying to make up for lost time," he laughed.

The inside joke is that he can't actually see the lights, having been born without any eyes. Incidentally, the band's name was coined by Burnside because he felt "my life has been rudely interrupted". "Not just by being born two weeks late, but by being born with no eyes, a cleft palate, Asperger's Syndrome and epilepsy."

Perhaps it's this drive to catch up that has enabled Rudely Interrupted to achieve more in the five years of their existence than most other "normal" bands who've been together twice as long.
Kingston This Week (Ontario, CA) reports:

Don't ask Jay Serdula, "How are you?" Don't ask, that is, unless you have at least 30 minutes to hear his answer.

That's because, as a person with Asperger Syndrome, Serdula takes the question literally. As an adult "Aspie" he realizes that sometimes people use the question to mean 'hello', especially if they just keep on walking past as they pose the question.

"When people say the same thing to mean two different things, that's what confuses me," he told a graduate class on autism spectrum disorders at St. Lawrence College recently. "It would be less ambiguous if they would say 'hello' when they want to greet me and save 'how are you?' for when they want to know the answer. I find it a burden to answer 'how are you?'."

Serdula came up with a solution to this recurring problem. He designed a T-shirt that reads on the front: 'If you ask me 'how are you?' it will take me 30 minutes to tell you. Do you still want to know?' And on the back it further instructs: 'Remember, if you only intend to greet me say 'hello', not 'how are you?'. Do not ask 'how are you?' unless you really want to know the answer and you can spare at least 30 minutes to listen to the answer. If I appear to be in a hurry, do not ask me any questions.'

Apparently Aspies aren't the only people with this problem, since several in the class placed orders for one of the colourful T-shirts.

Saturday, October 15, 2011

Victimization

Crime is a big problem for people with autism and other disabilities. The Bureau of Justice Statistics has issued Crime Against Persons with Disabilities, 2008-2010 - Statistical Tables. Some major findings:
  • ƒIn 2010, the age-adjusted violent victimization rate for persons with disabilities (28 violent victimizations per 1,000) was almost twice the rate among persons without disabilities (15 violent victimizations per 1,000).
  • ƒBetween 2009 and 2010, the number of violent victimizations against persons with disabilities dropped 25%.
  • ƒIn 2010, among the disability types measured, persons with cognitive disabilities had the highest rate of violent victimization (30 per 1,000).

Special Education Premises

Miriam Kurtzig Freedman writes of the "broken premises" of special education:
  • That the system needs uniform rules and federal and state bureaucracies with stifling regulations and procedures for all SWD. Ignoring the necessary cornerstone of trust for effective schooling, IDEA manifests the premise of distrust between parents and schools. Congress created this education system to be adversarial. It’s as simple as that.
...

I suspect that one reason for the complexity and regimentation of this system is that it serves a very diverse group of SWD – from the most severely disabled, including mentally retarded, multiply handicapped and deaf and blind students (for whom the law was initially written) to students with milder disabilities, including those with specific learning disabilities, speech/language impairments, or other health impairments, including ADD and ADHD. Notably, this second group now makes up the vast majority of all SWD. In California, of the 609,665 students served in 2007, according to the last-available 29th Annual Report to Congress by the Office of Special Education [and Rehabilitative] Services, students with learning disabilities, speech/language impairments, or other health impairments added up to 483,613 students – 79 percent of all SWD in the state! Surely we can agree that their needs are very different from the first group of SWD. Yet this system is premised on treating all SWD the same in terms of process, bureaucracy, regulations, legal requirements, etc. In any event, this piece focuses on the latter group – 79 percent of California’s SWD – with milder disabilities.

...

  • That the parents’ role is to enforce the law. Due to the premise that parents cannot trust schools and need due process protections against them, Congress handed them the job of IDEA’s private enforcers. They have to advocate for their child against their school. Reportedly, IDEA has become the fourth most litigated federal civil statute. Litigation and fear of litigation drive much of special education in many states. In the 2008-2009 school year, California was among the top five states in terms of adjudicated hearings, according to a 2010 article by Perry A. Zirkel and Gina Scala, “Due Process Hearing Systems Under the IDEA: A State-by-State Survey,” in the Journal of Disability Policy Studies.

In creating this role for parents, the law skewed common sense. First, it requires a cooperative team effort by schools and parents and then it allows them to sue each other. How can that be? Second, it imposes no responsibility on parents to work with schools to help their children learn. It’s time for President Obama’s eloquent call: turn off the TV, help with homework, put kids to bed at night. Parents should parent their kids, not fight their schools.

There are some significant omissions in this analysis.

First, it should have noted the reason why Congress passed IDEA (then the Education for All Handicapped Children Act) in the first place: namely that some schools had refused to provide any education for children with disabilities.

Second, it is misleading to suggest that the system treats all children "the same." Services vary widely according to type and extent of disability. Also note that the IDEA report shows that students with autism accounted for only 4.4 percent of the California total.

Third, the analysis should have noted that, as "repeat players," school districts have great advantages in legal conflicts with parents.

Fourth, parents who fight for their kids in IEP and due-process hearings are also going to help with their homework. It is inaccurate and insulting to suggest that negligent parents are the problem.


Friday, October 14, 2011

Illinois Cracks Down on Alternative Treatment

Chelation and hyperbaric oxygen therapy are two alternative treatments for autism. In Illinois, a physician is in trouble for using them, as The Chicago Tribune reports:
Dr. Anjum Usman, of Naperville, has been a star in the world of alternative treatments for autism for years, but now she's facing professional discipline for her approach to the frustrating disorder.

In prescribing chelation, a hormone modulator and hyperbaric oxygen therapy, Usman subjected a young Chicago boy to unproven treatments and demonstrated "extreme departure from rational medical judgment," a complaint filed this week by the Illinois Department of Financial and Professional Regulation states.

Listing those treatments, along with dozens of dietary supplements and other therapies, the state said that "none has … been proven to influence the course of autism."

Many of these treatments are extolled in online forums and at conferences like Autism One, held in the Chicago area each spring. Lured by testimonials professing miraculous recoveries, desperate parents of children with autism spend thousands of dollars on them despite a lack of evidence and in spite of known risks.

The complaint, which alleges that Usman "engaged in a pattern of practice or other behavior that demonstrate incapacity or incompetence to practice," asks that Usman's medical license be revoked, suspended, placed on probation or otherwise disciplined.

Both Usman, medical director of the True Health Medical Center, and the boy described in the complaint were featured in the 2009 Tribune series Dubious Medicine. The series examined unproven alternative treatments for autism and concluded that many amount to mass uncontrolled experimentation on children

Thursday, October 13, 2011

Mistakes in the West Virginia Law

AP reports:

A series of legislative errors threaten West Virginia's new law extending insurance coverage to a crucial treatment for children for autism.

Lawmakers were told Tuesday that while none of the mistakes is huge, they make the new law almost impossible to carry out.

That prompted a House-Senate Judiciary subcommittee to endorse corrective legislation for the upcoming regular session.

The new law eventually will require both public and private insurers to cover applied behavioral analysis. Experts say this treatment can greatly help with some of the neurological disorders that fall under the autism diagnosis.

The law exempts individual and small employer policies. It also sets spending and age limits. Some of the errors leave those limiting provisions unclear. Others kept language amended out of the bill before its final passage.

Wednesday, October 12, 2011

Autism and the Healthcare Law

As noted earlier, the 2010 healthcare law may have a direct effect on state insurance mandates. At the Autism Speaks blog, Stuart Spielman writes:

Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on the constitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.

Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.

As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.

...

With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:

  • 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
  • 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
  • 38.6% of families who have a child with autism have financial problems (16.7%)
  • 57.2% of families who have a child with autism cut back or stop working (21.7%)

As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.


California Mandate: Insurers and the Signing Message

Governor Brown's signing message has given a bit of ammo to the insurance industry. Victoria Colliver writes at The San Francisco Chronicle:

In his signing message, Gov. Jerry Brown expressed reservations about the law and the therapy, saying, "There are remaining questions about effectiveness, duration, and the cost of the covered treatments that must be sorted out.

The law's chief critics, health insurers, read that to mean the governor questions whether they should cover these costly treatments, while the parents of autistic children and their supporters say Brown's reluctance reflects nothing more than the pressure applied by insurance lobbyists.

"There's not a lot of controversy in medical communities about the effectiveness of the treatment," said Kristin Jacobson, who represents the Alliance of California Autism Organizations, which is made up of about 40 groups. "The insurance industry was very effective in raising concerns, and luckily the governor was able to see beyond that."

...

Kaiser officials said the health maintenance organization has had a long-standing policy of generally considering ABA to be an educational, rather than medical, service and on that basis hasn't routinely covered it.

SB946 changes that.

"We're working in close collaboration with (state regulators) to implement the bill," said John Nelson, spokesman for Kaiser, which has about 13,500 members in California diagnosed with autism. "But we agree with the governor's signing message in that there are areas that need to be clarified."

Tuesday, October 11, 2011

Followup on the California Mandate

In the wake of the California mandate, David Lazarus writes at The Los Angeles Times:
"The only people who don't think of behavioral therapies as a medical treatment are insurance companies," said Kristin Jacobson, co-founder of the Alliance of California Autism Organizations and a leading proponent of the new state mandate.

"The rest of the medical community is united in seeing these treatments as medically necessary," she said.

...

Marcia Eichelberger is president of the Autism Society of California and mother of a 19-year-old with autism. She said there's no question that receiving behavioral therapy has given her son a chance at independence and helped keep him from even costlier institutionalization.

"Had we not done these types of interventions with our son, his frustration level would have been so great that he couldn't have stayed at home with his family," Eichelberger said.
...
The association also emphasizes that the new mandate for coverage will cause premiums to increase for individuals and employers.

"At a time when lawmakers voice concern about rising healthcare costs, it makes no sense to sign a new law that will raise healthcare costs by $850 million a year," said Patrick Johnston, the group's president.

That sky-high number comes from a study commissioned by the industry group. A separate study for the state Legislature by the California Health Benefits Review Program estimated that the cost to insurers of implementing the law would be closer to $93 million.

“Courage and common sense have prevailed as Governor Brown has chosen to side with California families and taxpayers, rather than the health insurance lobby,” said Autism Speaks Co-founder Bob Wright. “Autism Speaks singles out Senate President Pro Tem Darrell Steinberg whose unwavering leadership and commitment led to this success.”

Authored by Senator Steinberg, SB.946 clarifies settlements negotiated by the Brown administration last summer with two major health plans that behavioral health treatments, such as applied behavior analysis (ABA), are eligible benefits with no caps on age or amount of benefits. The settlements initially appeared to provide the needed coverage, but contained a flaw that substantially negated their intended impact, requiring the legislative remedy provided through SB. 946.

The law will start taking effect July 1, 2012 as health plans renew policies and sunset in 2014. By virtue of the early intervention provided through ABA, California taxpayers are expected to save $140 million a year in special education and social service costs, according to an independent analysis by the California Health Benefits Review Program. In addition, the improved access to ABA therapy could create at least 20,000 new jobs.


Monday, October 10, 2011

More on Brown and SB 946

Governor Brown signed the California insurance mandate, but without a great deal of enthusiasm. Don Thompson writes at AP:

Health insurance plans will be required to provide coverage for children with autism or other developmental disorders under a bill signed into law by Gov. Jerry Brown on Sunday, making California the 28th state to mandate coverage.

Senate President Pro Tem Darrell Steinberg said his bill is needed to make sure physicians can provide medical treatment for autistic children. Insurance providers currently can deny coverage of development disorders because they are classified as an education service.

Brown said Sunday that he had signed the bill despite concerns about its costs. The California bill will require coverage starting in July 2012.

...

Brown, in a signing message, also said he is concerned about "effectiveness, duration and the cost of the covered treatments."

The federal government will establish "essential health benefits" under national health care reform, Brown noted. If the coverage under SB946 isn't included as an essential benefit, the coverage will automatically disappear when the bill expires on July 1, 2014. He referenced a recent Institute of Medicine report that said the top priority under the new federal law "is finding the right balance between making coverage available for people to get the care they need and doing so at a cost we can all afford."

Here is the governor's signing message (CLICK TO ENLARGE):





Sunday, October 9, 2011

Brown Signs California Mandate

The Los Angeles Times reports:

Gov. Jerry Brown approved a measure Sunday that will require health plans to include coverage for autism as a medical benefit.

Insurers will be required to cover the treatments only until the federal healthcare law signed by President Obama is implemented. If the federal government does not provide coverage for the treatments outlined in the bill by July 2014, the state autism-coverage mandate will expire.

Senate leader Darrell Steinberg (D-Sacramento), the author of the bill, hailed Brown’s signature as "a critical victory for thousands of California children and families. For many of them, having this therapy covered by their insurance is the difference between despair and hope."



Facebook and the California Mandate

California autism activists are posting photos on Governor Brown's Facebook wall. They are urging him to sign the autism insurance mandate. Here is one example:

More on the South Park Episode

CBS has more detail on last week's episode of "South Park."

Picking up where Michele Bachmann's controversial remarks left off, the episode starts with the South Park boys discussing how girls at their school are being required to get HPV vaccinations. Bachmann ovhad made headlines by slamming fellow Republican hopeful Rick Perry for mandating these vaccinations for Texas schoolgirls, CBS News reported.

Fourth -grader Kyle, one of the main characters in the quartet, breaks down the controversy for his friends, explaining that some people believe vaccines can cause autism or Asperger's. That hubbub picks up when another character, Stan, visits the school's guidance counselor in a sullen mood, which the counselor mistakes for symptoms of a developmental disorder. The counselor then calls the school nurses and and asks, "Did we vaccinate Stan Marsh for the flu last year? I think he's got Asperger's."

People with Asperger's display symptoms including repetitive rituals, odd speech, and socially and emotionally inappropriate behavior.

Stan's story gets national attention as the first confirmed case of Asperger's caused by a vaccine and the President even signs a bill, "Stan's Bill," to ban mandatory vaccinations. The oft-controversial quartet member, Eric Cartman, then joins the brouhaha by shoving hamburgers down his pants, claiming the vaccine caused him to develop Asperger's as well.

Medicaid and Autism

Medicaid is a major concern for people on the spectrum. Michelle Diament writes at Disability Scoop:

A new website launching this week with backing from the federal government is offering a one-stop overview of the services available to people with developmental disabilities in each state.

The site, dubbed the Medicaid Reference Desk, offers a breakdown of the various Medicaid benefits — including medical and social services — offered to those with disabilities based on where they live.

Though the federal government mandates that Medicaid programs in each state meet certain requirements, states have significant leeway. As a result, the benefits available from one location to another and eligibility requirements for programs can vary wildly.

The reference desk is designed to help families wade through the bureaucracy, according to officials at The Arc, who created the new website with funding from the U.S. Department of Health and Human Services.

The Autism Society, which previously had a dustup over his Medicaid position, is proposing reforms in the program:

  • Moving to a voucher-based system. This will significantly improve the quality of services and care, eliminate fraud and abuse, and improve access to the ever-shrinking pool of healthcare providers willing to accept Medicaid reimbursement rates. A voucher-based system would allow people to receive care on the private market, decreasing the financial burden on federal and state governments.
  • Creating more incentives for states to adopt innovative care coordination techniques and outcomes-based care. The Autism Society believes a transition to national Medicaid pricing, similar to Medicare pricing, will streamline access to services across state lines.
  • Expanding the Medicaid Buy-In Program for Working People with Disabilities, increasing portability across state lines and loosening the rigidity of the program, which inhibits commonsense patient-centered care. It is also important to promote efforts to transition more individuals to community- and home-based care as opposed to the more expensive and less desirable institutional care.
  • Including development of workplace skills in the Individualized Education Program (IEP) process. Teaching workplace skills to children and young adults will help them prepare for independence in adulthood, reducing the long-term dependency on government entitlements

  • Saturday, October 8, 2011

    Self-Advocates and Parents

    Autistic self-advocates and parents of autistic kids do not always make eye contact (autism in-joke). Jean Winegardner writes at The Washington Times:

    All too often, self-advocates*—individuals with autism themselves—feel that parents of children with autism don't want to hear what they have to say. "There is a saying amongst developmentally disabled activists," writes one such activist in a recent blog post. "It goes like this: 'Some parents just want disabled children to speak and disabled adults to shut up.'"

    These are harsh words, but they are at the heart of a conflict that recently came to a head over this very issue: When it comes to the developmental disability rights movement, who should be leading the way?

    The Thinking Person's Guide to Autism, a website devoted to providing information about autism from autistic individuals as well as parents and professionals, saw a conflict unfolding on the internet last month between a parent advocate and a self-advocate and stepped in to offer them a do-over of sorts. The result has been a series of blog posts which have run over the past two weeks, with voices from many corners of the autism community writing, commenting, arguing, and hopefully listening to each other.

    This particular dust-up began when parent advocate and author Robert Rummel-Hudson, who blogs at Fighting Monsters with Rubber Swords, wrote a post about a movie that used the words "retarded" and "Downsy." After describing that language as offensive to parents of children with special needs, he came under fire for having left out disabled people themselves.

    Blogger and autistic self-advocate Zoe Gross, who blogs at Illusion of Competence, responded with her own post making the point that when writing about offensive language such as this, it is important to talk about the fact that these words are hurtful not just to relatives of disabled people, but to disabled people themselves.

    Watching this unfold and spiral into unpleasantness, the editors at Thinking Person's Guide to Autism (TPGA) wanted to open a forum for Robert and Zoe to talk with a fresh start. "We both wanted a do-over," says Zoe, "so we agreed to come on TPGA and have the conversation again, with more people and less shouting, and see if we couldn't make something positive out of it."

    Left Brain/Right Brain weighs in:

    If you ask me, “who should lead the autism rights movement?” the answer is simple. No one. Emphasis on one. As in no one person can or should. We are talking about too diverse a group of people for any one person to lead.

    ...

    That means we need people, plural, call them leaders if you will, who will represent the self-advocates. We need people who will represent those who, for whatever reason, can’t or don’t self-advocate. Most of all, we need these people to work together. To not only be the allies of autistics, but allies of each other.

    There are many things that parents like myself—parents of young children with great challenges—should realize. This, of course, in my own humble opinion. I’ll list only a few.

    It is in our children’s own best interest to be allies with self advocates. They not only can teach us things, but the fact is our kids are the minority. Seriously. First, there is a big population of unidentified adults out there. Kids are the minority, even amongst autistics. Even if you have problems accepting that, the “classic” autistic kid is the minority even amongst the autistic children of today. For example, most parents report their autistic kids are getting letter grades. Only 2.4% were reported by parents as “can’t speak”.

    ...

    We don’t need a leader. We need leaders. Thousands of them. That’s why it’s a “movement” not a political party.


    Restraint in Indiana

    In Indianapolis, WRTV reports:
    Autism advocates are concerned an Indiana Court of Appeals' decision to drop charges against a special education teacher who helped restrain a special needs student could send the wrong message to Indiana teachers.

    Catherine Littleton, a teacher at Perry Meridian Middle School, was originally charged with confinement, battery and neglect of a dependent in connection with her treatment of a 12-year-old boy with autism in February 2010.

    Authorities said the student, who had a history of behavioral problems, began striking himself in the classroom.

    When other measures did not calm him down, investigators said Littleton allowed her teacher's aide to tape socks over the boy's hands, use orthopedic belts to tie his legs to a chair, then tipped the chair onto its back on the classroom floor.

    The Appeals Court on Thursday dismissed the charges against Littleton, calling the action neither "an unreasonable use of force or based upon an unreasonable belief that such action was necessary to protect (the student) and others in the classroom."

    But the Autism Society of Indiana and parents of special needs students expressed concern Friday that the case could affect how teachers restrain children.

    "There are guidelines, and there are ways to do it effectively, because you can really hurt someone," said Executive Director Dana Renay. "We need to work harder to educate parents and make sure schools have their policies in place and people know what their children's rights are.”

    Friday, October 7, 2011

    Different Positions on the California Mandate

    Patrick Johnston, president and CEO of the California Association of Health Plans, writes at Capitol Weekly in opposition to the California mandate bill:

    SB 946 would increase pressure on the State’s General Fund; increase health premiums by hundreds of millions of dollars; exempt public health insurance programs and the millions of children they cover; and, by shifting the responsibility of educational services onto health plans, would set a costly new precedent.

    Our current budget situation is proof that taking benefits away from the public is much harder than giving them new ones. Yet this bill mandates providing non-medical services for autism in July of 2012, which would end if the benefit isn’t part of the “essential health benefits” that will be included in policies sold to individuals, families or small businesses under the new federal health care law.

    Under federal law, the cost of any additional benefits required by state law above and beyond “essential health benefits” must be borne by the states. Once these benefits are terminated, the pressure to restore those benefits would be great and THE STATE would have to absorb the cost for this mandate.

    Another massive flaw in SB 946 is the exemption for public health plans from covering the same services for autism that private plans are required to cover. This carve-out means that California will require benefits for children of means while millions of low-income children will not have them. If carving out Medi-Cal, CALPERS and Healthy Families is too expensive for the State to cover, how is that cost any less dramatic for a private sector that is also facing budget struggles?

    The California Association of Health Plans recently released a report projecting the cost of treating autism in California. Our estimates indicate that covering educational, non-medical services nears $850 million a year.

    Today, Capitol Weekly carries a response from Peter Bell, executive vice president for programs and services at Autism Speaks.

    Mr. Johnston’s assertion was accompanied by the same inflated cost analysis health insurance lobbyists have floated without success in Sacramento and 27 other state capitols that have required health care plans to stop discriminating against families dealing with children with autism and cover ABA treatment. Rather than estimates, we have real-life experience over several years in states that have enacted autism insurance reform showing that the impact on premiums is consistently well under 1 percent, or less than the cost of a cup of Starbucks per person per month.

    ABA provides a level of early intervention for children diagnosed with autism that starts before they enter school and that has been scientifically proven to improve their functioning and help them achieve independence in the future. In the process, the need down the road for taxpayer-funded special education and social services declines. An independent analysis by the California Health Benefits Review Program estimated the initial savings for California taxpayers at almost $140 million, money that could help offset education and other critical services that are being cut.

    The nation's largest autism science and advocacy organization, Autism Speaks, worked with Governor Brown’s administration and Senate President Pro Tem Darrell Steinberg to help craft SB 946, which awaits Gov. Brown’s signature. SB 946 provides a much-needed solution for families and California taxpayers, while shielding insurers from unreasonable financial exposure.