One of the major issues around vaccination is the long disproven worry that they can cause autism. Younger Americans are not only more likely to oppose mandatory vaccination, but are also more likely to say that vaccines can cause autism. 21% of under-30s say that they can cause autism, compared to only 3% of over-65s.
Full poll results can be found here.
An autism insurance reform bill unanimously passed the full House floor Thursday and now heads to the Senate.
House Bill 885 would require health insurance policies to cover autism treatment, and specifically Applied Behavior Analysis, for Mississippi children ages 2-8.
"Every once in a while you get up here and you get a fast pitch, one that you ought to hit outta the park," said state Rep. Charles Busby, R-Pascagoula, referring to the bill.
It now heads to the Senate, which has a similar bill awaiting vote on its full floor.Janel Davis and Kristina Torres report at the Atlanta Journal-Constitution:
With a unanimous decision, the Georgia Senate approved a bill on Thursday that would require insurance companies to provide autism treatment coverage for young children.
The 54-0 vote echoed a unanimous vote on similar legislation approved by the Senate during last year’s session.
Senate Bill 1 will likely reignite one of the most controversial issues from last year’s legislative session, when the chamber used a similar proposal as a wedge that eventually sank both it and a popular medical marijuana bill. With the state Legislature starting fresh in the first of a two-year cycle, supporters believe they have enough time to find common ground with opponents.
Today Congressmen Chris Van Hollen (D-MD), David McKinley (R-WV), Tim Walz (D-MN), Chris Gibson (R-NY), Jared Huffman (D-CA), and Dave Reichert (R-WA) reintroduced the bipartisan IDEA Full Funding Act. In 1975, Congress took the critical step of passing the Individuals with Disabilities Education Act (IDEA), providing a promise that every child with disabilities would have the opportunity to reach his or her full potential. At that time, the federal government committed to pay 40 percent of the average per pupil expenditure for special education. However, that pledge has never been met, and current funding is at just 16.1 percent. The IDEA Full Funding Act would require regular increases in IDEA spending to finally meet our commitment to America’s children and schools.
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"Our parent community stands ready to support the IDEA Full Funding Act,” stated James H. Wendorf, Executive Director, National Center for Learning Disabilities.
"... We thank Representatives Chris Van Hollen (D-MD), David McKinley (R-WV), Tim Walz (D-MN), Chris Gibson (R-NY), Jared Huffman (D-CA) and Dave Reichert (R-WA) for their leadership in support of students with disabilities,” said Mary Kusler, Director of Government Relations, National Education Association.
“This important federal legislation now before us is vital toward ensuring that our nation honors its obligation to students with disabilities,” said Thomas J. Gentzel, Executive Director, National School Boards Association. “NSBA fully supports the IDEA Full Funding Act, and applauds its focus on creating a long-term, 10-year plan that will adequately fund the federal share of costs for special education. Improving educational outcomes and raising student achievement for students with disabilities is crucial.”
AASA Executive Director, Daniel Domenech said, “Full funding of IDEA remains AASA’s top legislative priority..."Christina Samuels reports at Education Week:
Previous versions of this bill have not passed (including a bill introduced last year by the same group of congressmen) but this time around, supporters have a stated advocate in Rep. John Kline, R-Minn., the chairman of the House education committee. In an interview with Education Weeklast year, Kline said that more money for special education was a priority for him. At that time, he said that he would like to see the federal government reach the 40 percent bar sometime in the next three to five years.Bills with a prime sponsor from the minority party have little chance of passing the House, and Kline did not specifically commit to move this bill. The prime sponsor of the Senate companion (S. 130), David Vitter R-LA, is from that chamber's majority party, but is not a member of the committee of jurisdiction.
"I think we can set it on path," Kline said back in March. "That will be a good debate to have."
Although a Senate committee passed a bill requiring health insurance coverage for children with autism, its future is cloudy in this year's session of the General Assembly.
The autism bill passed unanimously in the Senate insurance committee and is popular among Senate leadership. Parents of children with autism have lobbied at the capitol for years for its passage. But business and insurance lobbyists oppose it – and House Speaker Rep. David Ralston (R-Blue Ridge)says he is unwilling to support a bill that he says may pose a hardship on small businesses.
"My concern is that we have to have a resolution that's fair and doesn't work a hardship on businesses that results in people losing jobs because of a mandate," Ralston said Monday.
Last year, Gov. Deal ordered the state insurance system to cover autism treatment for the children of state employees. Ralston says he wants to wait a year or more for a cost benefit analysis from that program before supporting the autism bill.Ralston takes a lot of campaign money from the insurance industry.
Mississippi Secretary of State Delbert Hosemann today released a lengthy plea of support (posted in its entirety below) for a pair of bills he helped craft that would require health insurers to cover autism services.
Hosemann, whose 3-year-old grandson was diagnosed with autism last year, urged legislators to pass Senate Bill 2581 and House Bill 885. He also included some heartbreaking testimony from parents and professionals who deal with autism every day and who support the measure.
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Here's the entire email from Hosemann:
Every child deserves a chance ...
10,000 children are affected by autism in Mississippi and none are covered by insurance for the most recommended treatment. Thirty-eight other states have adopted insurance coverage for autism.
Please take a moment to read statements from parents and professionals who work with this issue.
We ask you to support the Autism bill. The following are dates, times, and room numbers for committee meetings at the Capitol this week in which the Autism Insurance Bill should be brought up for a vote:
Tuesday, January 27th at 1:00 pm in Room 402 - House Insurance Committee
Wednesday, January 28th at 2:00 pm in Room 210 - Senate Insurance Committee
"After seeking a . . . BCBA, my brother at the age of about 12 began to use approximations to request preferred items as well as attempt to feed himself, urinate in the toilet, bathe himself, dress himself, etc. . . Although we were truly blessed to have such help, I began to notice that my father was never around. The reason being was...he worked. He worked all day every day in order to provide for his child with special needs. . ." --Amber Orman, BCBA, West Point, MS
"As a single mom I am still struggling with healthcare issues for my son who currently needs other treatment to assist with his condition. I am having to make hard decisions and go without needed medical services and pay for medical bills for which I did not have coverage when our health insurance was denied...We need your help."--Melinda Todd, Parent, Jackson, MS
"You can imagine the...blow when you find out that the insurance you have paid for does not cover anything for your child. Then, to find out that you basically have to move to find the only therapy program available, is in Jackson, and even then, no insurance coverage, just money up front."--Elizabeth Cobb, Parent, Madison, MS
"Time is not on the side of the children diagnosed with autism. My family moved from Georgia to Fulton, MS to help in any way that we could. The need was so great that the Autism Center of North Mississippi was born. We can barely provide services due to lack of insurance coverage. The majority of our families live below the median income level and struggle to pay for gas to come to our center, much less pay for behavior analytic therapy. This bill must pass so that the children can get the help that they need without causing a hardship on the family. Autism is hard enough!!!"--Sharon Boudreaux, BCBA, Tupelo, MS
"The lack of programs and resources for children on the Autism Spectrum in our state is underwhelming to say the least, while right here in our backyard at UMMC, Dr. Rik Lin and his team are performing groundbreaking research into the causes of ASD, How tragic if this research being conducted in our world renown facilities cannot help the families who live right here!"--Frances Rooks Patterson, Special Olympics, Madison, MS
"We were determined to help our little girl come out of her own distant world, and come into ours. Alayna has been receiving the ABA therapy now for a little over four years. . . . She continues to progress and we are amazed to see how much she has changed since she first began therapy in 2010." --Angela Tate, Parent, Pontotoc, MS
"In 2009, my brother, John, was diagnosed with autism at the age of two. He could not communicate his wants and needs with me or my family. Instead, he would bang his head, hit, bite, and scream. His aggression and self-injury was completely overwhelming...Within months of therapy, John began showing improvements. Even the smallest gain had the biggest impact on our family."--Haley Wood, BCBA, Tupelo, MS
"Children who would have never dreamed of attending college, if provided treatment early and in an intensive manner, many children will not only attend, but also graduate from college and move on to a rewarding career and life. By not providing treatment early in their lives, we stack the deck against them, and our entire state, who will (in one way or the other) be responsible for their lifelong care."--Dr. James Moore, Visiting Assistant, USM, Hattiesburg, MS
"Without early intervention, children with ASD suffer isolation, unemployment, high rates of comorbid mental illness and institutionalization, and poor school achievement. Not only would passing this legislation make an incredible impact on the lives of children with ASD in the state of Mississippi, but it would ultimately save taxpayers money. In a study conducted by Chasson, Harris, and Neely (2007), it was found that the state of Texas would save $208,500 per child with ASD across 18 years of education if early intensive behavioral interventions were implemented. Using a conservative estimate of 4500 children with ASD in the state of Mississippi, based on 2012 NACCRRA estimates of 287,047 children aged 5 to 11 in the state and recent CDC findings that 1 in 64 children has an autism spectrum disorder, Mississippi would save approximately $935,145,304.00 by mandating insurance coverage for early intensive behavioral interventions."--Dr. Keith Radley, Assistant Professor, USM, Hattiesburg, MS
The success of vaccines seems to have given people cause for not vaccinating as much as they once did, said Los Angeles resident Derek Bartholomaus, who runs a website called "the anti-vaccine body count."
The site keeps a ticker of preventable illnesses (144,886), preventable deaths (6,312), and number of autism diagnoses scientifically linked to vaccinations (0) since June 3, 2007.
Still, Bartholomaus is not sure how many minds he's changing.
"It's really hard because it gets into the conspiracy theorist mentality," he said. "If it were just a rational and logical discussion, there's no debate. Vaccines are safe and effective.
One thing about Google trends is that they normalize their graphs. They take the highest interest level and set that at 100. So the two graphs above don’t tell us how the “autism mercury” search compares with interest in autism in general. Let’s graph them both, shall we? (click to enlarge)
Blue is autism. Red autism mercury. Yes, that line at the bottom that is so small you can’t see the trend at all is autism mercury. And that’s the point that I found most interesting. For all the noise made by the “mercury moms” in the past, the mercury idea was never as big a movement as they would like you to believe.
Just before 7 p.m. last Thursday, as the Disneyland measles outbreak was emerging, the Los Angeles Times published an outraged editorial. It didn’t blame Disneyland, where the outbreak originated before going on to infect 70 people across six states. Nor did it blame any public agency. Instead, it took aim at a buoyant movement that won’t “get over its ignorant and self-absorbed rejection of science.”
The faction was the anti-vaccine movement — its holy text a retracted medical study, its high priest a disgraced British doctor named Andrew Wakefield. “The prospect of a new measles epidemic is disturbing,” the editorial said. “So is the knowledge that many ill-informed people accept a thoroughly discredited and retracted study in the journal Lancet that purported to associate vaccination with autism.”
Officials from Mexico to California are now scrambling to contain an outbreak that began at Disneyland but has now spilled across state lines, infecting dozens, many of whom never received the measles-mumps-rubella vaccine (MMR).
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And in Wakefield, who still preaches the gospel of anti-vaccination from Texas, such individuals find a true martyr — a man who has sacrificed everything to take on powerful pharmaceutical companies and the biggest villain of all: the government. Those who came to hear him speak in 2011 at Graceview Baptish Church in Tomball, Texas, left messages of encouragement, according to the New York Times: “We stand by you!” and “Thank you for the many sacrifices you have made for the cause!” Another person, suddenly aware that a reporter was in the midst, warned the writer she better be careful. “Be nice to him,” the woman said. “Or we will hurt you."
“To our community, Andrew Wakefield is Nelson Mandela and Jesus Christ rolled up into one,” J.B. Handley, co-founder of a group that disputes vaccine safety, told the Times. “He is a symbol of how all of us feel.”Tara Smith writes at Slate:
While the incidence of measles has dropped about 99 percent since the introduction of the vaccine for measles, mumps, and rubella, that doesn’t mean we’re out of the woods. The past year has shown a resurgence in measles infections in the United States. Last year was the worst year for measles in two decades. While we’ve seen fewer than 100 cases of measles in most years since the turn of the century, that number spiked to 644 cases in 2014, from 23 separate outbreaks in 27 states.Christopher Ingraham writes at The Washington Post:
Before the vaccine, the United States saw approximately 4 million cases of measles each year and 400 to 500 deaths. These are the stats that vaccine-deniers tend to emphasize—a relatively low number of deaths compared with the number of infections. However, those statistics alone leave out a big part of measles infections. Prevaccine, almost 48,000 people were also hospitalized each year because of measles and measles complications. One in 20 of those infected developed pneumonia. More rarely but more seriously, each year 1,000 became chronically disabled due to measles encephalitis.
Measles is not a benign disease.
A 2014 AP-GfK survey found that only 51 percent of Americans were confident that vaccines are safe and effective, which is similar to the proportion who believe that houses can be haunted by ghosts. I don't need to make the case about how harmful these beliefs are -- it's been done plenty of times before, and moreover studies show that arguing with anti-vaxxers only makes them more confident in their beliefs.
But the latest CDC data illustrate the troubling resurgence of a disease that, as of 2000, had been declared eliminated. Anti-vaxxers are quite literally turning back the clock on decades of public health progress.Adam Nagourney and Abby Goodnough write at The New York Times:
Dr. James Cherry, a specialist in pediatric infectious diseases at the University of California, Los Angeles, said the outbreak was “100 percent connected” to the anti-immunization campaign. “It wouldn’t have happened otherwise — it wouldn’t have gone anywhere,” he said. “There are some pretty dumb people out there.”The Los Angeles Times reports on a case of closing the barn door after the horse is out:
The number of California parents who cite personal beliefs in refusing to vaccinate their kindergartners dropped in 2014 for the first time in a dozen years, according to a Times data analysis.
The shift came amid rising alarm over the number of children being exempted from immunization, which prompted new campaigns to reverse the trend.
A state law that went into effect last year made it more difficult for parents to excuse kindergartners from vaccines. Instead of signing a form, parents now must get a signature from a healthcare provider saying that they have been counseled on the risks of rejecting vaccinations. Alternatively, they can declare they are followers of a religion that prohibits them from seeking medical advice from healthcare practitioners.
“This child has autism,” the card reads. “Please be patient while we help our child regain control.”
Now her son carries his own card, beginning with the words, “I have autism.” An explanation of autism is printed on the reverse side.
It’s a sad commentary on modern life that parents and other caregivers, sometimes pushed to the brink of physical and emotional exhaustion, have to worry about icy stares, too. But requests for autism cards are growing, in Minnesota and beyond.
AuSM, a St. Paul-based advocacy and education organization, sells five cards for a dollar. Websites now offer many versions, from informational to heartbreaking.
“You can’t imagine what it is like to live like this every day and your stares and whispers do not help,” reads one. “Please educate yourself before you judge. Parents like me need all the support we can get.”
On Jan. 1, the Alabama Department of Public Health began issuing autism ID cards to ease interactions with first responders, such as police officers, firefighters and emergency medical teams. People with autism are seven times more likely to get into trouble with the criminal justice system, due largely to misread cues.
“Those events are often anxiety-producing for anybody,” said Bama Hager, policy and program director for the Autism Society of Alabama, and the parent of a 14-year-old son with autism. “For an individual on the autism spectrum, an interaction with a responder can exacerbate symptoms. For many, verbal communication is quite challenging.”
Like other 529 plans, ABLE account contributions are made after-tax. The money grows tax-free. Provided the contributions and earnings are used for qualified disability expenses, withdrawals are tax-free. They very much resemble Roth IRAs, except the savings intention here is disability costs and not retirement.
The Administration’s plan calls for all earnings distributions on 529 plans to be subject to ordinary income taxation, at rates as high as 39.6 percent. Will this include the new type of 529 plan signed into law by President Obama just a month ago, the ABLE account?
If the Obama tax hike plan sweeps in ABLE accounts, they may never actually achieve liftoff. Conventional 529 plans would “dry up” and die off, according to Joe Hurley of the 529 portal website savingforcollege.com. “States that are not able to retain sufficient assets in their 529 plans will have a difficult time keeping their plans open,” Hurley added.
Since ABLE accounts are only a little over a month old, none have actually been established yet by 529 sponsors (i.e., states). If the tax treatment were to change, there would be no market for ABLE accounts and no incentive to invest resources in rolling them out for parents of disabled kids
Even if ABLE accounts are excluded from the rest of the president’s tax hike plans for 529s, it would still kill them off. Since ABLE accounts will only be offered in conjunction with the larger 529 accounts, the death of the latter necessarily means the stillbirth of the former. It’s like shooting the horse and expecting the cowboy to keep riding.
Lawmakers are wading into the complicated issue of accountability tests as they ponder changes to the law currently known as No Child Left Behind, but a group of disability advocacy organizations are already saying they don't want to see one change that has been floated—an elimination of the cap on students who can be tested to "alternate achievement standards."
Currently, about 1 percent of all students—equivalent to about 10 percent of students with disabilities—can be counted as proficient for accountability purposes on tests that have less depth, breadth, and complexity than the assessments given to their typically developing peers. These "1 percent tests" have been aimed at students with severe cognitive disabilities. (The tests are formally known as "alternate assessments based on alternate achievement standards," or AA-AAS.)
The draft renewal legislation proposed by Sen. Lamar Alexander, a Republican from Tennessee who chairs the Senate education committee, would lift those caps, leaving it up to the states to decide how many students can be counted as proficient when taking these alternate tests.
The Consortium for Citizens with Disabilities' education task force—a coalition of more than 20 groups— said in a Jan. 21 letter that such a move would "essentially wipe out a decade of progress which has allowed parents, teachers and school leaders to better understand the potential of students with disabilities."
Military families with a child with autism spectrum disorder (ASD) are underrepresented in the literature. In order to provide appropriate services, research must be done to determine the needs of these families. A qualitative methodology was used to interview military spouses with children with ASD about their experiences with therapeutic services. Overall, results indicate military families with a child with ASD experience challenges associated with both the military lifestyle and having a child with special needs. Due to their membership in two groups prone to support limitations and therapeutic service accessibility issues, military families with a child with ASD may be at additional risk for high levels of stress and difficulty obtaining and maintaining ASD related services.Some comments from their interviewees:
Schumer’s legislation [S 163] will create and fund a program to provide voluntary tracking devices and expand support services for families with children who have Autism Spectrum Disorder (ASD) or other developmental disorders in which “bolting” from parents or caregivers is common. This voluntary program would only be for families who choose to use the devices. Schumer’s decision to author and introduce legislation will ensure that the Department of Justice (DOJ) has the authority and funding to provide grants to local law enforcement entities and other organizations with an interest in assisting these children.
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In October 2013, Avonte Oquendo, a 14-year-old boy with a diagnosis of Autism Spectrum Disorder, bolted from his school in Queens. Authorities and volunteers searched for Avonte for more than three months, until his remains were tragically discovered on January 16th in College Point, Queens. In November 2013, in response to this case, Schumer called for the DOJ to expand one of their current grant programs to provide voluntary tracking devices, and make eligible children who have autism or other developmental disorders in which “bolting” from parents or caregivers is common. In January 2013, DOJ agreed to make this an eligible usage for Byrne JAG grants, which was an important step, however there is not sufficient funding in this program to provide voluntary tracking devices for individuals with ASD on any broad scale. Schumer’s legislation, Avonte’s Law, would create a permanent, $10 million grant program dedicated to purchasing these devices for individuals with ASD and other relevant disorders, as well as training to use these devices. A new grant program would also provide additional resources to local entities that find other innovative ways to assist families.
“Senator Schumer’s legislation focuses attention on an issue that gravely affects so many in the autism community,” said Autism Speaks President Liz Feld. “Tragically, a number of wandering cases often end up being fatal. The resources and attention directed at this issue through Senator Schumer’s bill are sorely needed and an important contribution to the national dialogue that has ensued following Avonte’s heartbreaking case. Sadly there have been far too many more tragic accidents involving wandering since Avonte's passing a year ago.”
The American Academy of Pediatrics recommends that pediatricians screen for autism. If results are concerning, pediatricians refer the patient to Early Intervention. They would also refer the patient for a comprehensive autism spectrum disorder (ASD) evaluation. In Massachusetts children suspected of having ASD must wait until they receive the “official diagnosis” from a specialist before they can access autism specialty services. A provisional diagnosis with a positive screen is not enough. It can often take months to get an appointment to receive the “official diagnosis.” Look on page 13 at http://www.mass.gov/eohhs/docs/dph/com-health/early-childhood/operational-procedures.pdf. Early intervention is very important while the brain is as its greatest plasticity. This wait time may affect the individual’s lifelong prognosis. (Please note that it is possible to get EI that is not targeted for autism immediately, so technically they are not denying EI services.)
BACKGROUND AND OBJECTIVE: Parental refusal and delay of childhood vaccines has increased in recent years and is believed to cluster in some communities. Such clusters could pose public health risks and barriers to achieving immunization quality benchmarks. Our aims were to (1) describe geographic clusters of underimmunization and vaccine refusal, (2) compare clusters of underimmunization with different vaccines, and (3) evaluate whether vaccine refusal clusters may pose barriers to achieving high immunization rates.
METHODS: We analyzed electronic health records among children born between 2000 and 2011 with membership in Kaiser Permanente Northern California. The study population included 154 424 children in 13 counties with continuous membership from birth to 36 months of age. We used spatial scan statistics to identify clusters of underimmunization (having missed 1 or more vaccines by 36 months of age) and vaccine refusal (based on International Classification of Diseases, Ninth Revision, Clinical Modification codes).
RESULTS: We identified 5 statistically significant clusters of underimmunization among children who turned 36 months old during 2010–2012. The underimmunization rate within clusters ranged from 18% to 23%, and the rate outside them was 11%. Children in the most statistically significant cluster had 1.58 (P < .001) times the rate of underimmunization as others. Underimmunization with measles, mumps, rubella vaccine and varicella vaccines clustered in similar geographic areas. Vaccine refusal also clustered, with rates of 5.5% to 13.5% within clusters, compared with 2.6% outside them.
CONCLUSIONS: Underimmunization and vaccine refusal cluster geographically. Spatial scan statistics may be a useful tool to identify locations with challenges to achieving high immunization rates, which deserve focused intervention.
In a potentially major advance in diagnosing autism spectrum disorder, San Diego's Pediatric Bioscience is preparing to sell a blood test later this year that would detect risk of one of its most common forms
The company's test detects antibodies in a woman’s blood that can cause what it calls “maternal autoantibody-related” autism, which the company says, based on clinical studies, represents 23 percent of all autism cases.
The test delivers a false positive response just 1.3 percent of the time, said Jan D’Alvise, the company's president and chief executive.
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A positive test in mothers of infants or young children could expedite referral for assessment, she said. Also, if given before a planned pregnancy, the test could help women decide whether they should turn to parenting alternatives such as surrogate pregnancy or adoption.
Children of those who test positive would be sent to a specialist for a final diagnosis, expediting therapy.
Pediatric Bioscience plans to start selling the test in the third quarter of this year, D'Alvise said at the Biotech Showcase conference in San Francisco, an annual meeting of biotech investors and companies held concurrently with the JP Morgan Healthcare Conference. The company is now raising funds for that launch.
The test will cost about $1,000, and the company will partially subsidize the test for the women who aren't able to pay. Insurers are expected to reimburse for the test once they're familiar with it and have received recommendations from clinicians.
The market for such a screening method could be worth $1.8 billion annually, D’Alvise said.As a previous post noted, however, there are serious scientific questions about this blood test.
A Waxahachie man with autism who was kicked out of college for surprising another student with a hug will be allowed to return to school.
The woman who received the unsolicited hug said she never intended to complain and was shocked when she learned about the punishment.
Student With Autism Kicked Out of College
"I didn't want him to get in trouble, special needs or not,” said Taylor Bruton. “I didn't want anyone to get in trouble, not over a hug.”
Brian Ferguson, 20, was taking special needs classes at Navarro College last month when he thought he recognized a young woman in the hallway, his mother said. The woman turned out to be Bruton. The two had never met.
Bruton said Ferguson hugged her and kissed her on the top of her head.
“And it was a peck,” she said.
She says some teachers noticed she was a little startled.
"They asked me about the incident,” she said Wednesday. “I explained what happened and I told them, 'It's not a big deal. I don't want anyone to get in trouble and I don't feel the need to report this.' And they asked me for a written statement, just in case."
Over the past decade, scores of researchers have used magnetic resonance imaging (MRI) to reveal structural abnormalities in the brains of people with autism. One of the most consistent findings is that thecortex is larger than normal during childhood and shrinks earlier than normal during adolescence.
A new study calls these findings into question. The study, published 10 December in Neuroimage, shows that head movement during structural MRI causes certain regions of the cortex to appear smaller and thinner than they actually are.
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It’s too early to say whether head movements skewed the results of studies that reported structural abnormalities in the brains of people with autism. But the new findings underscore the importance of safeguarding against head motion during brain imaging. This is especially important for studies involving people with autism, who are known to move their heads in MRI scanners more than controls do.
The Louisiana state board of education voted Wednesday pay a state university $251,000 to help train school-based teams on how to set rigorous standards that allow students with disabilities to show that they've mastered academic content.
A new law that passed in July gives individualized education program teams the power to create alternate pathways for grade promotion and graduation, thus permitting some students with disabilities to bypass Louisiana's high-stakes testing system. That program requires students to pass tests in 4th grade, 8th grade, and high school, but students with disabilities who have repeatedly failed the tests can now instead meet standards developed by their IEP teams to progress through school and earn a diploma.
But teaching IEP teams how to create those pathways—without running afoul of the Individuals with Disabilities Education Act, which says students with disabilities should get the same access to academics as their peers—is proving difficult. The grant, which was awarded to Louisiana State University Human Development Center in New Orleans, was approved without debate, according to an article in The Advocate in Baton Rouge
The study finds that the programs that prepare teens with autism for an independent life should start earlier. Right now they generally start the transitional services at age 16.
That is just part of what the study found. It also said that Connecticut must strengthen the bridge between the teen and adult worlds for the 12,000 young people living with autism. This will help them live and work independently as they reach their early 20s.
Another recommendation by the state is that it should increase housing and job placement assistance to young people with autism. The number of autistic children has gone up in recent years.
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Read the full report here.
Philip Gluyas, 49, an umpire in the Ballarat junior football league with Asperger's syndrome, claims to be living in fear after anti-autism blogger Oliver Canby urged people to kill him in a series of posts on the website 'Autism is Bad'.
Canby, who lives in Los Angeles, wanted people to show up at Mr Gluyas' Sebastopol home and murder him, the Supreme Court was told on Tuesday.
Canby, who does not believe Asperger's exists, claimed he would offer a $500 reward to anyone who carried out the murder.
Mr Gluyas, an outspoken advocate for the rights of people with autism, is suing Canby in the Victorian Supreme Court for defamation claiming he had made false and malicious statements about him, exposing him to hate, ridicule and contempt.
Mr Gluyas, who runs the blog 'Phil Gluyas: Autism News and Views. The truth about Autism is here', was first diagnosed with Asperger's in 1997. The condition is considered to be part of the autism spectrum.
In his statement of claim, Mr Gluyas revealed one of Canby's posts on the 'Autism is Bad' website went on to say: "Just to clarify, this is a threat of bodily harm, as well as a threat on Phil Gluyas' life".
Canby also wrote: "I hope someone comes to your house with a knife tonight and saws your head off".
Mr Gluyas was previously awarded $54,000 in damages in a separate defamation case in 2013 against another US anti-autism blogger, John Best, who lived in New Hampshire.
Best had claimed all forms of autism were caused by mercury poisoning and could be cured by a form of treatment known as chelation. But Mr Gluyas challenged this view, posting how conditions on the autism spectrum were congenital and could not be cured.
"This approach assumes that public misperceptions are due to a lack of knowledge and that the solution is more information - in science communication, it’s known as the 'information deficit model'," [Stephan] Lewandowsky wrote in The Debunking Handbook. "But that model is wrong: people don’t process information as simply as a hard drive downloading data."
Another aspect that gives the antivaccine movement the edge, even more so than other anti-science denialist groups, is the power of the story. They routinely present such compelling testimonials of children regressing after a vaccine. It doesn’t matter that epidemiology has shown repeatedly that correlation does not equal causation; the story is what matters because we are storytelling animals.
So to help dispel a myth, use these three steps. First, emphasize the core facts of the topic without even mentioning the misinformation. Take the 10% brain myth, for example. Simply say, "humans make complete use of our brains, this is clearly demonstrated with brain scan technology." Second, state the myth, but first preface it with an explicit warning. "There is a lot of pervasive misinformation about the brain. For example, 65% of the public falsely believes that we only use 10% of our brainpower." Third, present an alternative explanation for why the myth is wrong. Neuroscientist Barry Beyerstein can help here: "Brain cells that are not used have a tendency to degenerate. Hence if 90% of the brain were inactive, autopsy of adult brains would reveal large-scale degeneration." Yet we don't see this.
The National Advertising Division has recommended that Pursuit of Research, LLC, discontinue all challenged claims for the company’s Nutriiveda dietary supplements, which are marketed as “cures” for conditions that include attention deficit disorder, apraxia, autism, diabetes, dyspraxia, seizures, traumatic brain injury and stroke. The advertiser said it will appeal NAD’s decision to the National Advertising Review Board (NARB.)\
The claims at issue were challenged by Nourishlife, LLC, manufacturer of a competing product, Speech Nutrients.
An Illinois company and its owner will stop making allegedly deceptive claims that their dietary supplements are proven effective at treating childhood speech disorders, including those associated with autism, in order to settle Federal Trade Commission charges. Under the FTC settlement, the defendants also will pay $200,000 and are required to disclose any material connections with their endorsers.
“Parents of children with speech disorders need accurate information about products that may be able to help,” said Jessica Rich, Director of the Bureau of Consumer Protection. “This company took advantage of parents’ trust.”
Since at least 2008, NourishLife, LLC and its owner, Mark Nottoli, have sold Speak softgels and capsules and Speak Smooth liquid children’s supplements online and through a network of distributors for more than $70 per bottle. The supplements -- which contain Omega-3 and Omega-6 fatty acids and Vitamins E and K -- were advertised via the Internet, including search engine ads such as Google sponsored links and on websites, and at conferences on autism spectrum disorders.
For example, a Google sponsored link for Speak products, which could display if consumers searched on the term “toddler speech problems,” contained the statement, “Healthy Speech for Child – SpeechNutrients speak Supplement” and linked to a web page claiming the supplements were developed by a pediatrician to support “normal and healthy speech development and maintenance.” That web page also included a statement from a parent endorsing the product, who said “[my daughter] is speaking in more complex sentences and she is less gittery [sic], more focused.” Other statements from parent endorsers appeared in product brochures and on speechnutrients.com, such as:
“Speak vitamins have made my little boy talk. He is five years old and has not spoken until I began giving him the vitamins.”
“We were really amazed when Ben started singing along with a song on the radio . . . . and he was singing 3+ word phrases, not just one word here & there.”
According to the FTC’s complaint, between 2008 and late 2013, ads for Speak products made unsupported claimsthat the supplements develop and maintain normal, healthy speech and language capabilities in children, including those with verbal apraxia -- a motor speech disorder affecting the ability to utter sounds, syllables, and words.
These ads, the complaint asserts, also falsely claimed that Speak products are scientifically proven to improve children’s speech. In addition, the complaint charges that ads for Speak products deceptively claimed that the supplements are effective in treating or mitigating verbal apraxia and communication and behavioral difficulties in children with an autism spectrum disorder.
Schools in Massachusetts will be subject to new limits on physically restraining or isolating public school students under reforms ushered in late last year.
School staff members will no longer be permitted to pin students face-down on the floor in most instances and will need a principal's approval to keep children in a "time out" away from class for more than a half-hour. The changes -- which will be phased in this fall and officially take effect in January 2016 -- also require state officials to collect comprehensive data on how often schools restrain or seclude students and how often someone is hurt as a result.
Massachusetts' reforms were shaped, in part, by a June story by ProPublica and NPR that showed physical holds and isolation remain common in public schools across the country. Our analysis of federal data revealed these techniques were used more than 267,000 times in the 2012 school year, with some schools employing them dozens – or even hundreds – of times.
There's a growing awareness that, in some cases, children can suffer serious injuries and lasting trauma from such treatment. At least 20 children have died while being held down or left alone in seclusion rooms.
Spurred by tougher state and federal regulations, as well as professional standards, psychiatric and health care institutions have worked diligently over the past decade to limit their use of restraints and seclusion.
But rules governing public schools have remained more scattershot. The U.S. Department of Education issued restrictions, but made them voluntary. State and local authorities passed a patchwork of regulations that left dangerous techniques illegal in some places but perfectly acceptable in others. For instance, some states don't let schools use restraints that can restrict breathing – such as face-down "prone" restraints –on any children. But others do.
Massachusetts followed few of the half-dozen best practices for safe use of restraints and seclusion outlined in the federal guidelines and a proposed national reform bill, ProPublica's reporting showed. The Disability Law Center, an advocacy group, pointed out in a white paper submitted to officials reexamining Massachusetts' rules that the state compared poorly to its New England neighbors.
“Desperation created by the absence of approved treatments has unfortunately made autism families vulnerable to misleading claims about the effects of treatments and assumptions of safety,” Rob Ring, chief scientific officer of advocacy group Autism Speaks, said in an email.
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A federal lawsuit alleges a 19-year-old man with autism died of asphyxiation in 2011, when the oxygen valve disconnected from an inflatable chamber his family purchased for their home. The man’s parents, Amy and Robert Sparks, allege in the lawsuit, filed in North Carolina federal court, that OxyHealth LLC of Santa Fe Springs, Calif., marketed the chamber as safe for unsupervised use despite knowing the valves could disconnect. OxyHealth marketed the chambers at autism conferences, where Mrs. Sparks first learned of them, her attorney says.
OxyHealth, in court papers, has denied the allegations of negligence. Hans Holborn, an OxyHealth spokesman, said the company attends autism conferences to inform doctors about the availability of its oxygen chambers. “We do participate at these conferences, but it’s solely to raise awareness in the physician community,” Mr. Holborn said.In 2011, Jepson, Granpeesheh and colleagues found that it does not work:
Hyperbaric oxygen therapy (HBOT) has been used to treat individuals with autism. However, few studies of its effectiveness have been completed. The current study examined the effects of 40 HBOT sessions at 24% oxygen at 1.3 ATA on 11 topographies of directly observed behavior. Five replications of multiple baselines were completed across a total of 16 participants with autism spectrum disorders. No consistent effects were observed across any group or within any individual participant, demonstrating that HBOT was not an effective treatment for the participants in this study. This study represents the first relatively large-scale controlled study evaluating the effects of HBOT at the level of the individual participant, on a wide array of behaviors.
Nebraska became the 36th state to enact autism insurance reform in April 2014. The Nebraska law requires coverage for state-regulated policies through age 20 for ABA and speech, occupational and physical therapies; ABA coverage is capped at 25 hours per week.
A month later, Maryland became the 37th state to enact reform by virtue of new state regulations and the enactment of a law expanding access to ABA practitioners. The Maryland law requires coverage for at least 25 hours per week of behavioral health treatment for children aged 18 months through age 5; decreasing to a minimum of 10 hours per week for ages 6 through 18.
Washington was declared the 38th state to enact reform in late 2014 after state regulators ordered all state-regulated health plans to start covering autism treatment in 2015 and to reconsider all claims for coverage that had been rejected since 2006. The order resulted from a series of class action lawsuits that led to settlements prohibiting any exclusions, age limits, monetary caps or visit limits for coverage of autism treatment.
Similar legal action led Oregon, which became the 34th state to enact reform in 2013, to accelerate and strengthen its required coverage. The Oregon law was to start phasing in this year, but was accelerated and the coverage broadened under an order issued late last year by the state insurance commissioner. Similar to Washington state, the Oregon order was prompted by a ruling in a class action lawsuit.
Coverage in Kansas is now available under many state-regulated health plans after a prolonged legislative campaign succeeded in 2014 to expand the state's original 2010 law which limited coverage to state employees. The new coverage provides up to 25 hours a week of ABA coverage for children up to age 12, declining after four years to 10 hours per week.
The Maine Legislature voted to expand its 2010 law requiring coverage through age 5 up to age 10. Gov. Paul LePage vetoed the bill, but the Legislature voted to override the veto to make the bill law.
Every two years, the CDC works with researchers at sites across the country to examine autism incidence in a variety of American communities. The most recent data from the agency’s Autism and Developmental Disabilities Monitoring Network — collected in 2010 — suggests that autism affects 1 in 68 children.
This time, however, officials say they’re looking to learn more from the numbers.
For the first time, the CDC is asking researchers to consider the impact of changes to the diagnostic criteria for autism that took effect in 2013 with the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The agency is also taking steps to determine how communities are responding to figures showing an increasing number of children on the spectrum.
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As in the past, the 10 sites selected for the 2014 data collection will scrutinize medical and educational records for 8-year-old children in their area to determine how many fall on the autism spectrum. Meanwhile, six of the sites will also assess records for 4-year-old children.
But the records review will use two lenses — examining each case to determine if a child would qualify for an autism diagnosis under the current criteria in the DSM-5 and under the somewhat different definition in the manual’s previous edition.
What’s more, the CDC is asking research sites to collect information about how communities are using prevalence data.
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The enhancements to the CDC’s autism surveillance efforts come as the agency’s methods have faced criticism. In an editorial published last summer, the editors of the journal Autism sharply questioned the reliability of figures culled from a records review alone.
The NCLB law, which requires states to break out student achievement data by particular groups of students, including those in special education, "has provided so much good information we never had before about how students with disabilities are really performing," said Lindsay Jones, the director of public policy and advocacy for the National Center for Learning Disabilities.
That doesn't mean, she added, that there should be overtesting or "bad tests." But annual, statewide, assessments have provided educators with "an important data point" she said, helping to clarify "how kids with disabilities are performing compared to their nondisabled peers." The vast majority of students in special education can and should be up to par with most general education students, she said.
Back in October, as the testing issue was beginning to heat up in Washington, the Consortium for Citizens with Disabilities, which includes the Council for Exceptional Children, the National Center for Learning Disabilities, Easter Seals and other organizations, sent a letter to the leaders of the House education committee opposing legislation that would have scaled back the number of tests required in the law. (Back then, it was Rep. John Kline, R-Minn., who was and still is chairman of the panel, and Miller, who has been replaced by Rep. Bobby Scott, D-Va.)
At the time, the groups were referring to this bill, by Rep. Chris Gibson, R-N.Y., that would have called for grade-span testing, and this one, by Rep. Steve Israel, D-N.Y., that would have reduced the number of tests students are required to take. But similar legislation seems likely to be reintroduced in the new Congress, so that letter has taken on renewed significance.
“The current system we have right now is woefully inadequate,” says Angela Lello, director of housing and community living at Autism Speaks. "There are lots of long waiting lists. In some states, it can take as long as 10 years to gain access to [these support] services."
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"A person who is nonverbal or who has significant intellectual disability will require substantial support in adulthood, and fully independent living will not be possible," says Thomas Challman, medical director and neurodevelopmental pediatrician with the Geisinger Health System Autism & Developmental Medicine Institute in Pennsylvania.
Every state offers Medicaid-funded programs for people with autism, which can be accessed through each state's Developmental Disability Agency. These services can include home health aides to help with daily functions such as dressing and bathing, as well as job placement and housing assistance, Lello says. Yet, since more than 50,000 individuals with autism transition into adulthood every year, the support services are already being outpaced by their demand, she adds.
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But as parents wait for more services to become available, there are options available now to help children with autism thrive, says Challman, starting with early intervention therapy. “ Parents of children with [autism] can improve the likelihood of independent living by accessing, early and consistently, the types of therapies that help improve their child’s communication and social skills,” he says – areas that have significant impact on a child's ability to succeed in work and social settings.
Early intervention programs are available in every state for any child under age 3 who demonstrates a developmental delay, regardless of whether parents have health insurance, thanks to a federal mandate, which requires states to cover the costs of these programs if parents cannot afford them. What programs states are required to cover can vary, but no matter the technique, early intervention therapies all seek to help combat symptoms while the brain is still taking shape.
Most students with individualized education programs scored in the lowest achievement level on the field tests administered last spring by the Smarter Balanced Achievement Consortium, according to data released by the test-development organization.
The range of students with IEPs scoring at level 1, the lowest of four levels on the test, ranged from 61 percent in 4th grade math to 77 percent in 7th grade English/language arts. In comparison, 27 percent of all students scored at the lowest level in 4th grade math, and 34 percent of all students scored at the lowest level in 7th grade English/language arts.
Students with disabilities performed best in 3rd grade math, where 18 percent scored at level 3 or above, indicating they are proficient in the skills and knowledge for their grade. For all students, 39 percent were able to clear that bar.
The report results were first published on the website of the Advocacy Institute, a nonprofit organization that closely tracks educational issues related to children with disabilities. They were released by Smarter Balanced on Dec. 22. The tests will be fully implemented by 2014-15.
Cari Brown knows her family is luckier than most that have a child on the autism spectrum.
Her 4-year-old son, Craig, was diagnosed early. While living in Utah, they “literally won the lottery” in having him selected for an intense therapy program. Seeing the night-and-day results prompted them to move to Fort Collins to take advantage of state insurance laws that mandate some level of coverage for autism treatments.
But not everyone has those opportunities, Brown realized, prompting her crusade to fix state law and remove the cap on how much treatment a child can receive. She calls it a “moral obligation” to help other families.
State Sen. John Kefalas, D-Fort Collins, raised her mantle and aims to carry a bill to that effect in the Legislature this year.
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Ken Winn, chief clinical officer at Firefly Autism in Denver, said the difference in results between children who are diagnosed early and receive the behavioral therapy they need and those who don’t is drastic. Those, like Craig, who are diagnosed and begin treatment by the time they are 3 years old have a 90 percent chance of recovery, he said. [NOT REMOTELY TRUE]
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State law mandates insurers provide a minimum of $34,000 per year in coverage for children up to age 8; and $12,000 per year for those between ages 9 and 19. While the law specifies both of those amounts as minimums, most insurance companies don’t go beyond that, Winn said.
Even with the $34,000 minimum requirement, when dealing with young children recommended to have 40 hours a week in therapy, “you’ll hit that cap in a few months,” Winn said. When dealing with a lesser cap, as much therapy is focused on teaching the primary caregiver as it is working with the child — ironic, given the older one gets the tougher it is to break learned, socially unacceptable habits.
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Kefalas’ bill would set the treatment coverage requirement for each child patient to what is deemed medically necessary based on the child’s diagnosis. Children at different levels of the autism spectrum would be given different levels of treatment, based on their needs.
Josh’s mom Linda Stern is all too familiar with what many parents refer to as “the day the bus doesn’t come.”
“They put so much effort and wonderful work into the school experience and for most people all that work all that effort all that wonderful enriching experience just disappears,” Stern said. “They don’t even understand it, it’s like how come I’m not going to school and I’m sitting at home with mom watching TV all day long.”
The transitional period out of the school system in Illinois starts at age 14 ½. During that time, families work with the school to create post graduation goals based on the child’s interests and skills.
Though federal law requires that every child receive a transition plan, parents like Bill Casey feel the system can leave parents frustrated and confused.
“Parents don’t understand what’s offered to them by the community service organizations,” Casey said. “You really have to start digging to figure what’s available. You really need friends like Julie and Michael Tracy [of Growing Solutions Farm].to help guide you in some ways to find the right avenues.”
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More than half of people with autism struggle to find work and often don’t seek higher education opportunities.
For those who do, they can turn to Jennifer Gorski. Gorski runs the Autism Clinic and TAP Training Center at University of Illinois, Chicago.
“We are hearing about these needs from people in our community quite a bit,” Gorski said. “We formed the ASPiE group which is a support group geared toward supporting college students that are on the spectrum.”
ASPiE (Adults Spectrum People in Education) meet once a week to have frank conversations that every college kid has such as, what’s in store after college, questions about careers and managing course load.
The Alabama Department of Public Safety and the Autism Society of Alabama are partnering to bring certification cards to state.
These cards would be issued to people diagnosed with autism to help clear up any confusion there could be when dealing with emergency personnel.
The cards will be similar to ones that state a person has been medically diagnosed with autism spectrum disorder and that their medical condition impairs that person's ability to communicate with others.
Bama Hager, with the Autism Society of Alabama said Alabama is one of the first states to sign this into law.
"We had families that really reached out to the state legislature and asked for some sort of identification," said Hager.
This law went into effect on January 1. The card will also have contact information on the back so emergency personnel can call family members.In 2014, Virginia Governor McAuliffe signed "JP's Law, providing for a voluntary designation on licenses and other state identifications At the Ashburn Patch, Greg Hambrick wrote:
Just a few days into the law, Dr. Michael Oberschneider describes a very mixed response on it from his patients with autistic spectrum disorders. And within his outpatient therapy practice in Northern Virginia, he has already identified a trend in which adult and younger patients appear to have concerns about the law for themselves, while the parents of younger patients appear to be embracing it.In July, Annette Galagher reported at the University of Miami:
More specifically, several adults on the autism spectrum in Dr. Oberschneider’s practice have expressed fear that the law could become discriminatory for them. One adult patient shared, “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” And Dr. Oberschneider himself shares some of the same concern that JP's Law could also create moments for profiling or discrimination to occur. Dr. Oberschneider asserts, "Even though autism is more in the public eye today than ever before, that does not necessarily mean people understand it. To the contrary, I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous." Adequate education should, however, serve to dispel incorrect beliefs about autism for law enforcement agents.
Imagine that you are an adult with autism who at times has difficulty communicating and are sensitive to both flashing lights and loud noises. You get pulled over for speeding, or another traffic infraction, by a law enforcement officer who is unaware of your disability.
Watching your reactions to the siren and flashing lights, the officer mistakenly thinks you are impaired by drugs or alcohol.
Imagine you’re a teen with autism, waiting for a friend in a public place, and you begin pacing. A lot. A store manager sees you pacing and assumes that you’re up to something and calls security. They don’t understand that pacing is just what you do when you’re bored or stressed, and they want you to leave immediately.
Now imagine both of those situations defused by a piece of paper, a simple identification card that explains the nature of the holder’s autism and how it manifests itself. The police officer turns down the lights and gives the person she pulled over more time to answer questions. The security guard explains to the store manager that there’s no mischief planned, just a teenager waiting for a friend.
That is the goal of a new ID card that is a joint venture of theUniversity of Miami Center for Autism and Related Disabilities(UM-CARD), the Coral Gables Police Department, and theDisability Independence Group (DIG).
Diane Adreon, associate director of UM-CARD, said that the ID card concept was truly a collaborative idea that grew out of the group’s work with Coral Gables Police and DIG to conduct Miranda rights training for teens with autism spectrum disorders (ASD) and their parents, as well as adults with autism.
