Insurance Action in Georgia and Virginia

Dave Williams reports at The Atlanta Business Chronicle:

The Georgia Senate approved compromise legislation Tuesday requiring insurance companies to cover young children with autism.

Senators passed an autism bill back in January, but it ground to a halt in the House of Representatives over cost concerns.

After state Rep. Richard Smith, R-Columbus, chairman of the House Insurance Committee announced last week he would not allow a vote on the Senate bill, he met with his Senate counterpart to work out an agreement.

Under the compromise, which senators passed unanimously, the autism coverage mandate would be limited to children six years of age or younger. Payouts would be capped at $30,000 a year.

The bill also would exempt companies with 10 employees or fewer, while insurance companies wouldn’t have to offer autism coverage if they can demonstrate it would drive up their premiums by more than 1 percent.

The legislation now goes back to the House, which is expected to pass it in keeping with the agreement.

Joe Dashiell reports at WDBJ:

Governor Terry McAuliffe has signed legislation that should offer more help to Virginia families dealing with autism.

House Bill 1940 extends the requirement that health insurance providers cover treatments for children with autism. Under the new law, the age limit will rise from six to ten years old, and families say that change will make a big difference.

Angie McKissick is with the Piedmont Autism Action Group.

"It could mean the difference of a child talking and being able to function in society," McKissick told WDBJ7, "gaining more skills that they need to be able to live a productivelife, so it's huge. "

Autism in Minnesota Schools

The Autism Society of Minnesota reports:

The Minnesota Department of Education (MDE) recently released its annual Child Count report on students with disabilities for 2014. The report indicates 17,067 children and youth between the ages of 0-21 have been identified as having an autism diagnosis. This increase from the 2013 count of 16,603 makes 2014 the eighteenth consecutive year of growth in autism diagnoses in Minnesota schools.

The annual count by MDE reports only on the number of students who require an Individualized Education Plan (IEP) as a result of their autism challenges. It does not include students who may have a medical diagnosis of autism, but do not require additional supports or services in the classroom.

According to the Centers for Disease Control & Prevention (CDC), children with autism can reliably be diagnosed by age 2, and often earlier. “Autism is a complex disorder,” AuSM’s Executive Director Jonah Weinberg said. “Every individual with autism is impacted differently, but research shows that when early interventions and therapies begin by age 2-3, individuals have a much better chance of mitigating their disabilities and of being classroom-ready when it’s time for kindergarten.”

Because there is no mandatory registry for autism diagnoses in Minnesota, there is not a complete count of those diagnosed with autism within the state. Students with autism who meet their IEP goals and no longer require special education services may be removed from the MDE count, as are individuals over the age of 21 who have aged-out of the educational system. As a result, the actual number of individuals living with autism in Minnesota is unknown. However, the CDC estimates that approximately 1 percent of the population has autism, which is approximately 53,000 individuals in Minnesota, based on the most recent census data.

Established in 1971, the Autism Society of Minnesota (AuSM) is the state’s oldest autism-focused non-profit organization, serving the autism community from birth through retirement. AuSM focuses on education, outreach, and advocacy, and works through partnerships and collaborations to improve and expand community resources and programs

Chickenpox

The Detroit Free Press reports:

A Birmingham [Michigan] mother is furious after her sixth-grade son was sent home from class today because he's not fully vaccinated against chickenpox.

One of Michael Donovan's classmates is among three students in Birmingham Public Schools who is infected.

"I wasn't vaccinated, and I don't think it's fair that I can't go to school," Michael, 11, said after his mother, Sarah, was called to the school to pick him up.
...
Donovan said her two children were partially vaccinated, but she grew concerned when Michael's older sister, Jane, then a toddler, began exhibiting signs of autism.

She stressed that she's not against vaccinations but against requiring them.

Though health professionals and researchers have said links between autism and vaccines have been repeatedly discredited, Donovan and other parents believe the damaging side effects of vaccines are not fully known and often downplayed.

Donovan also says the policy violates federal privacy laws, because other children and parents know that children who are not at school during this period have not been vaccinated.
...
"I don't like this bullying. I'm going to push back somewhat. I'm not a media person — I'm not. I like privacy. But I think it's important for people to know the other side.

"It's not right. It's truly bullying. My son is being singled out and we're made to feel like were bad parents because we've decided not to vaccinate anymore."

Chickenpox, she noted, is usually not a serious disease. Only in rare cases does it have deadly complications.

"They're saying it's some deadly disease but, hello, we all had it," she said.

From CDC:

Chickenpox (varicella) used to be very common in the United States before the chickenpox vaccine became available in 1995. In the early 1990s, an average of 4 million people got chickenpox, 10,500 to 13,000 were hospitalized (range, 8,000 to 18,000), and 100 to 150 died each year. Most of the severe complications and deaths from chickenpox occurred in people who were previously healthy. Each year, more than 3.5 million cases of varicella, 9,000 hospitalizations, and 100 deaths are prevented by varicella vaccination in the United State

Limiting Restraint and Seclusion

At Education Week, Christina Samuels reports on restraint and seclusion:

Jessica Butler, the congressional affairs coordinator for the Autism National Committee, has been tracking the issue since 2009. In 2012, she started publishing her findings in a report, "How Safe is the Schoolhouse? An Analysis of State Seclusion and Restraint Laws and Policies." Her latest effort was released this week.

When Butler started her work in 2009, nine states had what she deemed "meaningful" laws restricting the use of restraint and seclusion with all students, and 21 had such policies in place specifically for students with disabilities, who are far more likely to be restrained and secluded than their typically developing peers.

As of this report, 22 states have such protections for all students, and 34 provide such protections for students with disabilities. Butler uses "meaningful" to describe states with laws (as opposed to non-binding guidance) that prohibit the use of restraint and seclusion except to prevent injury to the student or others, or states that offer multiple protections against restraint and seclusion.

Ava's Law Redux

Douglas Richards reports at WXIA on a reversal by the state lawmaker who had been blocking Ava's Law:

State Rep. Richard Smith (R-Columbus) tells 11Alive News that he has agreed to attach the language of Ava's Law to another bill that has already passed the House. The compromise was announced Thursday at the Georgia Capitol.

Ava's Law, which is named after a 9-year-old Ava Bullard of Toombs County, would require insurance coverage for children with autism in Georgia. The bill has been bottled up in the House for seven years in part because of Smith's opposition.

"I'm excited we have a solution," said Smith, who expressed frustration on the House floor Wednesday over the "flack" he'd been getting for his position against Ava's Law.

Smith, chairman of the House insurance committee, had been the biggest obstacle to the passage of the autism bill. Ava's Law, named for 10 year old Ava Bullard, would require insurance companies to cover treatment for children with autism. Smith viewed it as a burden on small businesses. Ava's mother lobbied hard for the bill for seven years—and learned early Thursday afternoon that Smith had agreed to a compromise.

"I can't take it. It's unreal. It's unreal. It's been seven years," Bullard said grinning in a capitol hallway, shortly before hugging Smith.

"I'm not that ogre everybody thinks I am. I have compassion for these people," Smith said at the announcement.

Smith agreed the compromise after the state senate stopped considering bills backed by Smith and members of his insurance committee – a strongarm tactic that Smith acknowledges happens every year in the legislature. Ava Bullard, who spent the day at school in south Georgia, found out about the compromise in a Facetime phone call with her mother in an office in the capitol.

Autism Speaks on Vaccines

At Left Brain, Right Brain, Matt Carey notices an addition to Autism Speaks's recent endorsement of vaccines:

The above statement by Mr. Ring was picked up by the press in February as it was so clear.

Next, Bob Wright, co-founder of Autism Speaks:

Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.
Bob Wright
Co-founder, Autism Speaks

It’s a fairly stilted paragraph in my read. It comes across as though Mr. Wright is trying to appear to ride the fence while at the same time pulling back dramatically from the clear statement by Mr. Ring. Scientific research has not directly connected autism to vaccines?

Stalling in Georgia

Andy Miller of Georgia Health News reports that Ava's Law is stalling in the state's House Insurance Committee.  A hearing resulted in no vote:

Anna Bullard, of Lyons, told the panel how ABA therapy improved life for her daughter, Ava. At age 2, the girl did not talk.

The Bullards’ insurance policy did not cover ABA, but the family paid for her to get it. Now, Ava “is at the top of her class’’ in a regular education curriculum, Bullard said.
“Ava is an example of the potential,’’ Bullard said. “Having a child, the most important thing is that they can speak.”

State Sen. Tommie Williams. R-Lyons, who is related to Ava, told the House lawmakers that their role “is to determine what makes good policy.”

As an employer, Williams said, “I’m not just looking for the best price [on health insurance]. I’m looking for the best policy.’’

Their testimony was countered by business and insurance groups.

Kyle Jackson of the National Federation of Independent Business said his small business members are very concerned about the rising costs of health insurance.
If the autism bill passes, he said, “I’m not going to say the sky is going to fall . . . but there is a cost to this.”

Jackson’s testimony was supported by David Raynor, of the Georgia Chamber of Commerce. And Graham Thompson of the Georgia Association of Health Plans said “there will be an impact’’ if the bill is approved.

ABA is not considered “an essential health benefit’’ under the Affordable Care Act, he added.

Allan Hayes of America’s Health Insurance Plans testified that “ABA therapy is not a cure’’ for autism. Insurance mandates increase costs for employers, Hayes said.

Aaron Gould Sheinin reports at The Atlanta Journal-Constitution:

The chairman of the House Insurance Committee said Wednesday that he will not allow a bill to pass this year that would mandate insurance coverage for treatment of autism for a limited number of Georgians.Instead, Rep. Richard Smith, R-Columbus, said he will introduce legislation later this week that would let voters decide whether to levy a new fractional state sales tax to provide treatment for all children with autism-related disorders.

Smith said Senate Bill 1 “is bad policy.” He said the bill would only provide coverage for 15 out of every 100 children with the disorder.

“What are you going to do with the other 85?” he asked. “How are you going to explain that to mom and dad, they’re not going to get treatment? It’s wrong. I will not pass that bill out of insurance.”

Graduation Rates

Christina Samuels reports at Education Week:

The graduation rate for students with disabilities has risen from 59 percent in 2010-11, to 61 percent in 2011-12, to the most recent statistics of 61.9 percent in 2012-13. That's 2.9 percentage points of growth over the time span. The student population as a whole has also shown improvement in graduation over that time, but the growth rate was just a hair slower: from 79 percent, to 80 percent, to 81.4 percent over the same three school years. That's 2.4 percentage points of growth.

...
A couple of caveats with these statistics: under the Individuals with Disabilities Education Act, students with disabilities are allowed to stay in school at least until age 21, or longer if state laws allow it (Michigan, for example, allows students to remain in public school until age 26.) So a 4-year graduation rate measure may not capture all students with disabilities who ultimately leave school with a "regular high school diploma," as the measure is intended to capture.

Also, states may have different definitions for what a "regular high school diploma" is for a students with a disability. For example, check out the difference between Kentucky and Arkansas policies, as explained in a 2013 document on promoting higher graduation rates in special education that was jointly published by the education reform organization Achieve the National Center for Educational Outcomes...

Substandard Vaccination and the 2015 Measles Outbreak

At JAMA Pediatrics, Maimuna S. Majumder and colleagues find that the MMR vaccination rate among the exposed population was 50-86 percent, way below the 96-99 percent for herd immunity.

The abstract:

The ongoing measles outbreak linked to the Disneyland Resort in Anaheim, California, shines a glaring spotlight on our nation’s growing antivaccination movement and the prevalence of vaccination-hesitant parents. Although the index case has not yet been identified, the outbreak likely started sometime between December 17 and 20, 2014.1,2 Rapid growth of cases across the United States indicates that a substantial percentage of the exposed population may be susceptible to infection due to lack of, or incomplete, vaccination. Herein, we attempt to analyze existing, publicly available outbreak data to assess the potential role of suboptimal vaccination coverage in the population.

Erin Allday reports at The San Francisco Chronicle:

Two years ago, Marin County conducted a survey asking parents why they decided not to vaccinate. Parents cited concerns about their children getting too many shots over too short a period of time as their primary worry, followed by doubts about the safety of newer vaccines. They said they were “unsure” whether vaccines could cause autism — a claim, long debunked, that’s held firm since a single study noting a possible ink was published in the 1990s.

That one study often is blamed for much if not all of the vaccine resistance still reported in the United States. But Sharon Kaufman, a UCSF medical anthropologist, said the issue also is tied deeply to major cultural and societal shifts that have happened over the past two decades.

Americans are much less trustful of government and major corporations, especially so-called Big Pharma, than they once were. Parents have seen medical science shift and change course over time — solid facts about diet and nutrition change from year to year, and drugs once deemed safe are pulled from the market.

Plus, in a break from past practice, patients are now encouraged to take responsibility for their own health and work with their doctor in a partnership, not taking advice blindly and without question.

“Skeptical parents are practicing the strong, practical values of our society today. This is one of the great ironies,” Kaufman said. “They’re aware of market-driven Big Pharma, they’re aware that scientific truths are unsettled. This is the land they dwell in, in which they have to make decisions.

Falling Through the Cracks

In Ellensburg, Washington, The Daily Record reports on autism mom Michelle Williams and the transition to adulthood:

Williams said after her son Gerik graduates from Kittitas High School at age 21, whether he lives at home or in his own apartment, he will need 24-hour care. He will receive assistance from the state Developmental Disabilities Administration, or DDA, which is part of the state Department of Health and Human Services.

The DDA will work with Gerik and his parents on his job, personal and housing supports for when he graduates.

The public school system supports autistic and other special needs adults through age 21. DDA service for adults doesn’t start until age 21. If an autistic adult leaves school before age 21, it creates a gap in service leaving families and caregivers to handle things on their own, Williams said.

“We are lucky Gerik is a DDA client,” Williams wrote. “There are some supports, although limited, available through DDA to help him in his future. I worry about people who are not eligible for DDA. These people fall through the cracks.”

Virginia Moves on ABLE Accounts

Michelle Diament reports at Disability Scoop:

Virginia became the first state to approve legislation related to the Achieving a Better Life Experience, or ABLE, Act, when Gov. Terry McAuliffe signed a bill this week allowing for the new savings vehicle.

Under federal law, the ABLE Act allows people with disabilities to open special accounts where they can save up to $100,000 without risking eligibility for Social Security and other government programs. However, states must put regulations in place before financial institutions can begin offering the accounts.

In addition to Virginia, legislatures in West Virginia and Utah have sent ABLE bills to their governors. What’s more, legislation is under consideration in 29 other states and draft bills are in the works in another seven, according to Heather Sachs, director of state government affairs for the National Down Syndrome Society

Mississippi Passes Bill on Mandates and Licenses

At The Clarion Ledger, Emily Le Coz reports on passage of an insurance mandate in Mississippi:

The Legislature on Tuesday sent House Bill 885 to Republican Gov. Phil Bryant, who has supported the measure and is expected to sign it. It extends health insurance coverage to autism services, such as Applied Behavior Analysis – called ABA.

The bill restricts coverage to children ages 2-8, but ongoing treatments can continue after that age cap if deemed medically necessary.

The bill also regulates the practice of ABA therapy and requires providers obtain state licenses.

"Today is a great day for so many families who face the daily struggles and challenges of autism," said state Sen. Rita Parks, R-Corinth, who authored the Senate version of the bill. "I have no doubt that this will help these children become more independent and productive citizens of our state."

The average policy holder will see an estimated 32-cent increase as a result of the change, said state Rep. Gary Chism, R-Columbus, who brought up the measure Tuesday on the House floor, where members unanimously voted to send it to the governor.

But small business owners apparently complained the increase would unjustly affect them, prompting a Senate amendment allowing those employing less than 100 people to pass along the charges to plan participants.

"Let's get this on the books. We can always come back to this," Chrism said in response to criticism by state Rep. Steve Holland, D-Plantersville.

Special Education Language is Getting Harder to Understand

At Education Week, Christina Samuels compares a paragraph in jargon with a plain-language translation, illustrating how special-education documents have become less readable over the past 30 years. 

The findings were part of a study published in the January edition of the Journal of Disability Policy Studies. The lead author, Sarah A. Nagro, is a graduate student at Johns Hopkins University in Baltimore. She is also a former special education teacher. Nagro wrote the simpler paragraph. She allowed me to share it.

Nagro looked at eight studies. The studies measured how easy or hard it is to read special education documents. The studies were conducted as long ago as 1984. They were also as new as 2014. The 1984 study found that most of the language was at a 9th grade level. The language got harder over time. The 2014 study said most of the language was at "grade 13." That is college level.

Best practices have said to use simple words and short sentences. In 1984, people suggested writing for the average 9th grader. By 2014, the new idea was to write for the average 5th grader. Most parents can understand language at that level.
So what happened? Nagro has two ideas. She said teachers might not think about their writing when they send notes to parents. They may be focused on other things, such as deadlines.

Her second idea is about official documents. Districts and states do not want to make mistakes. They may find it easy to use legal language. That way, they know they are saying the right thing.

As everyone in the world of special education knows, lawyers are either present at IEP meetings, or their influence is in the background.

Tocqueville wrote about American legal language: 

Where lawyers are absolutely needed, as in England and the United States, and their professional knowledge is held in high esteem, they become increasingly separated from the people, forming a class apart. A French lawyer is just a man of learning, but an English or an American one is somewhat like the Egyptian priests, being, as they were, the only interpreter of an occult science.

Invisible Disabilities

Naomi Gingold reports at NPR:

It is hard to pinpoint the number of Americans with an invisible disability, but it's estimated there are millions. Their conditions may range from lupus to bipolar disorder or diabetes. The severity of each person's condition varies, and the fear of stigma means that people often prefer not to talk about their illnesses.

But in employment disability discrimination charges filed with the Equal Employment Opportunity Commission between 2005 and 2010, the most commonly cited conditions were invisible ones, according to analysis by researchers at Cornell University's Employment and Disability Institute.

"You know, it's that invisible nature of an illness that people don't understand," says Wayne Connell, the founder and head of the Invisible Disabilities Association. He started the group after his wife was diagnosed with Lyme disease and multiple sclerosis.

"We'd park in disabled parking and she didn't use a wheelchair or a cane, and so people would always give us dirty looks and scream at us," he recalls.

"When they see someone in a wheelchair, OK, they get that they're in a wheelchair. But what if they have chronic pain, what if they have PTSD — anything from cancer to peripheral neuropathy to autism?"

Korean American Outreach and Cross-Cultural Adaptations

Roy R. Grinker and colleagues have an article in The Journal of Autism and Developmental Disorders titled "Cultural Adaptation and Translation of Outreach Materials on Autism Spectrum Disorder."

The abstract:

In order to connect with families and influence treatment trajectories, outreach materials should address cultural perceptions of the condition, its causes, and postdiagnostic care. This paper describes the cultural adaptation and translation of the Autism Speaks First 100 Days Kit into Korean for the purpose of improving autism spectrum disorder (ASD) diagnosis, assessment, and interventions. The goal of this study is to describe a methodology for future cross-cultural adaptations and translations of outreach materials on ASD, using the Autism Speaks First 100 Days Kit as an exemplar. The research involved two stages of qualitative interviews: unstructured individual and group interviews with 19 Korean child health and education professionals in Queens, NY, followed by structured cultural consensus modeling interviews with 23 Korean mothers, with and without children with ASD, in Queens, NY and the greater Washington, DC area. We conclude that a systematic approach to cultural translation of outreach materials is feasible. Cultural consensus modeling yielded information about numerous barriers to care, had a demonstrable effect on the translation of the kit, and was efficient when employed with coherent segments of a relatively homogeneous population and focused on a single condition.

From the discussion:

Stigma—a negative evaluation of the child—was a sub-text throughout the research, because interviewees stigmatized people with ASD, or the parents of someone with ASD. One woman, when asked to provide a list of words or ideas that came to mind when she thought about children with developmental problems, said, “I feel sad because there is no bond between the child and the mother and father.” In addition to “lack of a bond between parents and child” (coded here under the category of poor childrearing), the additional terms she included in her cards were “stubborn,” “egotistical,” “disobedient,” and “unstable.” Stigma was also related to the whether a developmental problem or functional impairment is a medical or non-medical problem, with the latter being more highly stigmatized. Deafness, for example might cause only mild shame, while autism would suggest that, in the words of one mother, “the child’s needs are not being fulfilled.”

ABLE Implementation

From ANCOR 

On March 10, the Internal Revenue Service (IRS) issued Notice 2015-18, which provides guidance regarding states' establishment of 529A plans under the recently-enacted Achieving a Better Life Experience (ABLE) Act. The notice advises states that they need not wait until the Treasury Department issues federal regulations or guidance implementing the ABLE Act to enact their own state-specific legislation to establish the accounts. The IRS says that if states begin to operate ABLE accounts that conflict with forthcoming federal guidance, transition relief will be provided to ensure that account holders are not adversely impacted. The notice also cautions states to ensure that the owner of an ABLE account is the designated beneficiary of the account, and also to ensure that any person with signature authority over the account not have or acquire any beneficial interest in the account.

Federal regulations or guidance regarding the ABLE Act are expected to be issued on or near June 19, 2015.

Setbacks for Mandatory Vaccination

Laura Rosenhall reports at The Sacramento Bee:

Legislatures in two states this week backed away from bills that would require more kids to get vaccinated, measures similar to one pending in California.

Democratic lawmakers in Oregon and Washington introduced bills this year to make it tougher for parents to opt out of getting their children common vaccines, an idea proposed in California’s Senate Bill 277 in response to a measles outbreak that started at Disneyland.

The Washington bill died in its state House on Thursday when the author failed to bring it up for a vote before a key deadline, the Associated Press reported. The Oregon bill stalled after one public hearing, and its authortold the Statesman Journal on Wednesday that she didn’t have enough votes to move forward.

Opponents of mandatory vaccines saw the bills’ defeats in other West Coast states as a glimmer of hope for their opposition to SB 277 in California.

“There really was quite a response to the families in Oregon, which is a much smaller state than we are,” said Rebecca Estepp of Poway, spokeswoman for a group called the California Coalition for Health Choice, which opposes mandatory vaccines.

Curiously, a Google search reveals no additional entries for "the California Coalition for Health Choice."  But the spokeswoman is the director of communications for "Health Choice," whose leadership team includes leading figures in the movement to link vaccines to autism.

Insurance Companies Applaud South Dakota Bill

AP reports on passage of a South Dakota insurance mandate that will benefit practically nobody, at least in the short run.

A group of lawmakers from both chambers ironed out a compromise Thursday that would require certain insurance plans to cover applied behavioral analysis therapy, which is not currently required of insurers in South Dakota but is in 38 other states.

Both the Senate and House passed the compromise version of the bill Thursday, sending it to Gov. Dennis Daugaard, whose administration supports it.

The bill requires coverage of ABA therapy only by providers who have a master’s or doctoral degree, which parents of autistic children say lessens its impact by limiting their options. But the legislation also establishes a workgroup of parents, lawmakers and insurers who will begin meeting this summer to figure out how to expand required coverage in the future.
...
Parents say the majority of the hands-on ABA therapy provided to children is from specialists who have high school degrees or higher, but not often master’s or doctoral degrees. They say limiting coverage doesn’t cover the majority of care given to children on a day-to-day basis. But insurers, who supported the version of the bill passed Thursday, had been worried about being required to provide coverage for workers who are not licensed to give care by the state.

The workgroup aims to establish a proposal for licensing and covering care providers not included in the bill passed Thursday.

Lobbyists for insurance companies applauded the compromise.

No kidding.  The bill is straight out of the Monty Python Insurance Sketch:

Vicar: But my car was hit by a lorry while standing in the garage and you refuse to pay my claim.

Devious: Oh well, Reverend Morrison, in your policy... in your policy... here we are. It states quite clearly that no claim you make will be paid.

Vicar: Oh dear.

Devious: You see, you unfortunately plumped for our 'Neverpay' policy, which, you know, if you never claim is very worthwhile, but you had to claim, and, well, there it is.

Oregon Legislator Abandons Vaccine Mandate Bill

At The Statesman Journal, Saerom Yoo writes:

Sen. Elizabeth Steiner Hayward, a family physician who led the charge for strengthening Oregon's school immunization law, will no longer pursue the legislation, a staffer said today.

Senate Bill 442, which has had one public hearing and attracted national attention, would have eliminated religious and philosophical exemptions from school shots. Only medical exemptions would have been allowed.

Oregon's nonmedical exemption rate for kindergartners is the nation's highest, at 7 percent. It's a number that has been steadily rising since 2000.

"After much careful consideration, Sen. Steiner Hayward has decided to no longer pursue this legislation," the Beaverton Democrat's chief of staff, Paige Spence, wrote in an email. "She is disappointed that the conversations have largely revolved around who is right or wrong about science and the benefits vs. risk of vaccines, rather than about the health and well-being of Oregon's children."

...
Portland pediatrician and Children's Health Alliance's medical director Dr. Jay Rosenbloom said while he was disappointed by how the debate around the legislation unfolded in Oregon, it wasn't atypical.

The vocal minority is loud and organized, while the majority tends to stay silent, he said. Legislators should remain focused on public health and vote based on sound science, he said.

"Mississippi and West Virginia have proved to us that legislation like this can work," Rosenbloom said. Mississippi and West Virginia are the only two states that don't allow nonmedical exemptions, and Mississippi has the country's highest vaccination rate, at near 100 percent. "This wasn't groundbreaking legislation. The problem lies in convincing legislators of what the science says about the safety of vaccines, rather than having this be a debate amongst constituents.

"Scientific facts are not established based on a popular vote. This is not an opinion vote."

Sen. Jeff Kruse, R-Roseburg, on Friday published a newsletter saying he believed vaccines are linked to autism and accusing the CDC of mismanagement and corruption, both of which are points made in the documentary Kennedy showed to lawmakers last week.

Mandate Setback in Tennessee

Dave Boucher reports at The Tennessean:

One of the three freshmen Senate Democrats is upset with a Senate committee — including a veteran Senate Democrat — that decided against discussing a bill that would have required insurance coverage for an autism therapy experts describe as the most effective.

Sen. Sara Kyle, D-Memphis, said she was disappointed no one moved to discuss the bill in the Senate Commerce and Labor committee.

"This is a sad day for families in Tennessee who are affected by autism," Kyle said. "I'm just real disappointed that we have a committee system, yet it seems like it's a pattern that some bills are not being heard and talked about..."

Most insurance companies, including state insurance providers, cover certain speech and physical therapies for autism, said Amanda Peltz, executive director with advocacy organization Autism Tennessee. But Kyle's legislation would've required insurers to cover applied behavioral analysis treatment, described by Peltz and other supporters of the bill as the best treatment.
...
Sometimes Republicans won't make a motion on a Democrat's bill, or vice versa. ButSen. Reginald Tate, D-Memphis, is on the committee and one of only five Senate Democrats.

"He did not make a motion to move that. I would have thought he would have moved it out to have it heard, but you'll have to talk to him about his thought process," Kyle said

A Bill in New York

FOR IMMEDIATE RELEASE

ASHA supports Bill No. A05141 on behalf of Speech Therapists

The American Speech-Language-Hearing Association (ASHA) submitted their letter in support of Bill No. A05141. ASHA is the national professional, scientific, and credentialing association for 182,000 members and affiliates who are audiologists; speech-language pathologists; speech, language, and hearing scientists; audiology and speech language pathology support personnel; and students. Over 16,000+ ASHA members reside in New York.

What does this mean for VR Consumers?

Job Coach specialists with New York ACCES-VR are not of a regulated profession. They only need GED to service consumers. The new bill changes the mandate to include a regulated profession only to deliver the service of Communication Support.

Furthermore, these professions must be of those which train their credentialed members in social pragmatic language disorders. Currently, these practitioners are Speech Therapists and Special Education teachers, and some psychologists. At this time, Social Workers are not trained in the nuances of these language disorders unless they subscribe for added training. It is important that services be provided in an appropriate manner consistent with the needs of the disability.

Additional Links:
· How To Support Bill A05141 – VR Communication Support for Autistic and other Consumer with language barriers
· Complete details about this bill
· Share this page to gather additional support

Click the screen capture below to read ASHA’s letter of support in PDF format.

No Numbers in Canada

VOCM reports:

Despite growing numbers, there has never been an epidemiological study carried out in Canada on Autism rates.

While research continues into what causes the disorder, no study has ever taken place in this country to examine possible patterns, causes and effects.

Right now, the Autism Society works with statistics provided by the US Center for Disease Control, which suggests that Autism Spectrum Disorder affects one in every 68 births.

Executive Director of the Autism Society in Newfoundland and Labrador, Scott Crocker says there are some 1,500 to 2,000 children under the age of 18 in the province affected by Autism, but there's no real way to track patterns, like genetics and environment. Crocker calls Autism in Canada, and the province, a 'public health emergency'.

Wakefield and RFK, Jr. in Oregon

Saerom Yoo reports at The Statesman-Journal:

Oregon legislators have canceled a meeting to discuss a bill that would eliminate nonmedical exemptions from Oregon's school immunization law, after it became clear that a controversial vaccine researcher who linked the measles, mumps, rubella vaccine with autism was planning to testify.

The Statesman Journal reported Tuesday that Andrew Wakefield, whose 1998 study was retracted from The Lancet and refuted by subsequent studies, was planning a trip to Salem to testify against Senate Bill 442.

He said in a phone interview on Wednesday that he objected to allegations made by Sen. Elizabeth Steiner Hayward, the bill's sponsor, that he committed scientific fraud in his research.

Sen. Laurie Monnes Anderson, D-Gresham, chairwoman of the Senate health care committee, said she canceled the March 9 informational meeting because she felt the first public hearing, on Feb. 18, provided enough information.

...

The March 9 meeting will only take invited testimony from constitutional law experts who will weigh in on the legality of SB 442, she said. During a work session, committee members can tweak the bill as well as vote on it.

Wakefield said his visit was requested by the Oregon Chiropractic Association. He said he planned to testify on vaccine safety, questionable science as well as ethical issues in the government and pharmaceutical companies that manufacture vaccines.

Yoo also reports on RFK Jr.'s visit to rally opponents of the bill:

[The] longtime environmental activist Thursday stood before a small crowd of Oregon lawmakers, staffers and opponents of a bill that would eliminate personal-belief exemptions from school immunizations, speaking about vaccine toxicity, the trillion-dollar pharmaceutical industry, and a federal public health agency he calls corrupt and troubled.
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Kennedy was accompanied by Brian Hooker, a California biomechanical engineer. Hooker wrote a reanalysis of a 2004 research that found no links between the measles, mumps and rubella, or MMR, vaccine and autism. In the paper, Hooker accuses the CDC of covering up data that showed black boys had a 3.4 times greater risk of autism associated with the MMR vaccine.

Hooker's study, which was published in Translational Neurodegeneration in October 2014, has been retracted. The retraction statement reads that "post-publication peer review raised concerns about the validity of the methods and statistical analysis, therefore the Editors no longer have confidence in the soundness of the findings."

Report on Special Education in California

EdSource reports:

A statewide task force unveiled Friday a 222-page plan to dramatically improve education for students with disabilities, described as the crucial next step in education reform in California.

With schools in the state in the throes of adjusting to three new education reforms – the switch to local school district control over spending, the introduction of Common Core State Standards, and the roll-out of new student assessments – the Statewide Task Force on Special Education is calling for a greater integration of much of special education into the education system, including teacher training, early interventions, the use of evidence-based practices and data tracking.

Among the recommendations are a “common trunk” of preparation curricula for teachers and special education teachers, the equalization of funding for special education students across the state and state payment of costs now borne by districts for preschool for young children with significant disabilities.

Home-Schooling and IEPs

Christina Samuels writes at Education Week:

A draft proposal in Connecticut that home-schooled students with disabilities receive individualized education programs and be monitored by their local school districts is meeting with resistance, the Hartford Courant reports.

The recommendation is one of several under consideration from an expert panel in the wake of the shootings at Sandy Hook Elementary in December 2012 that left 20 children and six adults dead. The draft proposal was released Feb. 12; the final recommendations are expected to be submitted to Gov. Dannel P. Malloy Friday.
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The chairman of the panel told the Courant that the reporting requirement, if approved, would only apply to children who had once attended public school. But the recommendation infringes on the rights of parents to educate their children as they see fit, home-schooling advocates say.

Deborah G. Stevenson, the executive director of National Home Education Legal Defense in Southbury, Conn., has written a lengthy rebuttal to the proposed recommendation, noting that Lanza was not home schooled and that federal law already provides a mechanism for children to be evaluated for special services with parental consent (this provision of the IDEA is called "child find.")

Appearance and Inference

At The Conversation, psychologist Scott Lilienfeld writes that autism creates cognitive traps for observers.  For instance, the signs appear around the time that kids start getting vaccines, so people wrongly assume cause and effect.

And many fad treatments for autism are surely born of desperation. There are no known cures for the condition. It’s not surprising that most parents of children with autism simultaneously seek out four to six different treatments for their children. Nor it is surprising that this field has been remarkably fertile ground for ostensible quick fixes, such as facilitated communication.

And some probably fall victim to a diabolical illusion. A number of the behavioral problems associated with autism, such as inattention and anger, often wax and wane over brief periods of time. If a natural – and unrelated – downtick in symptoms happens during or after therapy is delivered, parents and teachers may then conclude that the treatment brought the improvement, even though the decline in symptoms would probably have occurred anyway.

Appearance shapes how we view autism. Children with autism do not have the distinctive facial markers of, say, children with Down Syndrome or fetal alcohol syndrome. That fact might lead some to assume that individuals with autism are cognitively and emotionally normal individuals trapped inside a malfunctioning body. If that is so, all that is presumably required is an intervention, such as facilitated communication, to unlock their unrealized mental potential.

The popularity of autism fads imparts two sobering lessons. First, we can all be misled by the raw data of our sensory impressions. Virtually all autism misconceptions stem largely from what psychologists call naïve realism, the error of placing uncritical trust in our unfiltered observations. Second, scientists need to play a more active role in combating false information about autism and other mental disorders.

When researchers conduct studies that dispel the alleged dangers of vaccines or the alleged effectiveness of pseudoscientific treatments, they may assume that their job is done. That’s not the case. The legacy of autism fads suggests that their real work may have only just begun.

Mostly Genetic

At JAMA Psychiatry, Emma Colvert and colleagues have an article titled "Heritability of Autism Spectrum Disorder in a UK Population-Based Twin Sample."  It confirms that the causes of autism are mostly genetic.  The abstract:

Importance Most evidence to date highlights the importance of genetic influences on the liability to autism and related traits. However, most of these findings are derived from clinically ascertained samples, possibly missing individuals with subtler manifestations, and obtained estimates may not be representative of the population.
Objectives To establish the relative contributions of genetic and environmental factors in liability to autism spectrum disorder (ASD) and a broader autism phenotype in a large population-based twin sample and to ascertain the genetic/environmental relationship between dimensional trait measures and categorical diagnostic constructs of ASD.
Design, Setting, and Participants We used data from the population-based cohort Twins Early Development Study, which included all twin pairs born in England and Wales from January 1, 1994, through December 31, 1996. We performed joint continuous-ordinal liability threshold model fitting using the full information maximum likelihood method to estimate genetic and environmental parameters of covariance. Twin pairs underwent the following assessments: the Childhood Autism Spectrum Test (CAST) (6423 pairs; mean age, 7.9 years), the Development and Well-being Assessment (DAWBA) (359 pairs; mean age, 10.3 years), the Autism Diagnostic Observation Schedule (ADOS) (203 pairs; mean age, 13.2 years), the Autism Diagnostic Interview–Revised (ADI-R) (205 pairs; mean age, 13.2 years), and a best-estimate diagnosis (207 pairs).
Main Outcomes and Measures Participants underwent screening using a population-based measure of autistic traits (CAST assessment), structured diagnostic assessments (DAWBA, ADI-R, and ADOS), and a best-estimate diagnosis.
Results On all ASD measures, correlations among monozygotic twins (range, 0.77-0.99) were significantly higher than those for dizygotic twins (range, 0.22-0.65), giving heritability estimates of 56% to 95%. The covariance of CAST and ASD diagnostic status (DAWBA, ADOS and best-estimate diagnosis) was largely explained by additive genetic factors (76%-95%). For the ADI-R only, shared environmental influences were significant (30% [95% CI, 8%-47%]) but smaller than genetic influences (56% [95% CI, 37%-82%]).
Conclusions and Relevance The liability to ASD and a more broadly defined high-level autism trait phenotype in this large population-based twin sample derives primarily from additive genetic and, to a lesser extent, nonshared environmental effects. The largely consistent results across different diagnostic tools suggest that the results are generalizable across multiple measures and assessment methods. Genetic factors underpinning individual differences in autismlike traits show considerable overlap with genetic influences on diagnosed ASD.

Report on Policing

Michelle Diament reports at Disability Scoop:

In a report issued this week, the President’s Task Force on 21st Century Policing issued wide-ranging recommendations aimed at improving relations between the nation’s 18,000 law enforcement agencies and the communities they serve.
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The task force indicated that officers should only use “physical control equipment and techniques” as a last resort when interacting with people who have disabilities and other vulnerable populations including children and the elderly.

“Law enforcement agencies should carefully consider and review their policies towards these populations and adopt policies if none are in place,” the report said.

What’s more, rules should be in place to prohibit profiling and discrimination based on disability status and other factors and police should adopt technologies that will help them better serve those with special needs, the task force indicated.

One Parent's Perspective

Jody Allard writes at The Huffington Post:

I've never been normal, really. I was born without fingers on one hand. I suffer from mitochondrial disease, a genetic illness that has left me disabled in my 30s. I understand that these things aren't "normal," and I don't need them to be in order to feel valued. I do not believe that my self-worth is found in my fingers or my genes, and I have no trouble reconciling the fact that I am both abnormal and worthwhile.

Perhaps this is why I simply do not understand the push for autism to be considered just another variation of normal. Or something to be merely accepted, without searching for treatment, prevention or even a cure. Autism is a neuro-developmental disorder that may have a multitude of different causes. Why has it become taboo in many autism circles to suggest that autism is a disorder that merits searching for prevention or a cure? Instead, we are told that we should simply love and accept our children for who they are, not seek answers.

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It's a beautiful idea, this rhetoric about autism as something to be cherished. It creates a facade of acceptance and tolerance that makes everyone feel good about themselves. After all, we all know someone with autism. Now we can pat ourselves on the back for how open-minded we are. And there is nothing but good that can come from learning to accept and tolerate people who are different from us -- whether we are talking about autism or not. But here's the thing: Opening minds and hearts to autism will only remove some ignorant interactions and obstacles from our path. It will not ease sensory pain or gastrointestinal problems. It will not dissolve speech delays or improve social functioning. It will not eradicate the need for accommodations for my daughter to attend school.

Acceptance of autism is a valuable step in the process, as it helps remove the stigma surrounding being different. It leads us, as a society, further from judgment and closer to compassion. But when autism is viewed as just another variation of neurological function, it has the potential to limit or even eliminate access to research, therapies and desperately-needed accommodations for children with autism. It sacrifices real-world needs for feel-good romanticized ideals. And it ostracizes parents who are doing the best they can for their children.

It's OK to be different. It's OK to have health problems. It's even OK to have special needs. If the only way that we can accept our children is to seek to normalize them, perhaps it's time to ask ourselves why we only value "normal" children. It isn't a sign of love to deny your child's differences, and it isn't a sign of weakness not to glorify them.

Physicians and Requests to Spread Out Vaccines

At Pediatrics, Allison Kempe and colleagues have an article titled "Physician Response to Parental Requests to Spread Out the Recommended Vaccine Schedule."  From the abstract: "Virtually all providers encounter requests to spread out vaccines in a typical month and, despite concerns, most are agreeing to do so. Providers are using many strategies in response but think few are effective. Evidence-based interventions to increase timely immunization are needed to guide primary care and public health practice."

SCOTUS Refuses to Hear Vaccine Case

At Law360, Jessica Corso reports on the latest legal setback for the anti-vaccine movement, the Supreme Court's rejection of an appeal by a woman who claimed that vaccines caused her son's autism.

Chandra Price won’t be given the opportunity to argue her case in front of the Supreme Court following the court’s rejection of her writ petition Monday, letting the U.S. Department of Health & Human Services off the hook from having to defend itself against the charges.

The Federal Circuit rejected Price's appeal of a Court of Federal Claims decision that found the suit to be time-barred because she filed a motion for review too late.

In February of 2008, Price filed a petition with the Federal Claims Court claiming her son Christopher Wynn was diagnosed with autism due to trace amounts of mercury supposedly found in vaccinations he received.

The Vaccine Act, under which Price was suing, requires that a petition be filed no more than 36 months after the first symptoms of the alleged injury appear, according to court documents. The HHS filed a motion to dismiss in 2011 because Price’s son was first diagnosed in 1994, saying that placed her suit far outside of the statute of limitations.

Price’s attorney pulled her petition in 2012 but the plaintiff soon moved to reopen the case pro se, saying that the attorney didn’t understand the subtleties of her argument.

Price claims that the last round of vaccines given to him in 2007 led to his diagnosis of severe autism and that her petition, therefore, wasn’t time barred. She also alleged, in her motion to have the Federal Circuit rehear the dispute en banc, that her claims were egregious enough to allow her to bring the petition outside of the statute of limitations.

The Federal Circuit disagreed however, upholding the reasoning of the Federal Claims Court’s special master that the court lacked jurisdiction to hear the untimely case.