Antivaxxers Gain Ground in State Legislatures

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Before his presidency, Trump pushed the idea, hard and repeatedly.

Unfortunately, other Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

Lauren Weber at WP:

A wave of lawmakers who oppose vaccine requirements are winning elections for state legislatures amid a national drop in childhood vaccination rates and a resurfacing of preventable deadly diseases.

The victories come as part of a political backlash to pandemic restrictions and the proliferation of misinformation about the safety of vaccines introduced to fight the coronavirus.

In Louisiana, 29 candidates endorsed by Stand for Health Freedom, a national group that works to defeat mandatory vaccinations, won in the state’s off-year elections this fall.

...

Louisiana’s shift is a sign of the growing clout of the anti-vaccine movement in the nation’s statehouses as bills that once died in committee make it onto the legislative floor for a vote.

Since spring, Tennessee lawmakers dropped all vaccine requirements for home-schooled children. Iowa Republicans passed a bill eliminating the requirement that schools educate students about the HPV vaccine. And the Florida legislature passed a law preemptively barring school districts from requiring coronavirus vaccines, a move health advocates fear opens the door to further vaccine limitations.

...

In Michigan, the normalization of anti-vaccine views is also unfolding. Eleven lawmakers recently honored discredited anti-vaccine activist and former physician Andrew Wakefield, who is responsible for the retracted research falsely linking autism to vaccines. Nine of those legislators were elected after the pandemic began, including Angela Rigas, a hairdresser ticketed for protesting pandemic mandates at the state capitol.

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At a November conference held by Children’s Health Defense, an anti-vaccine group founded by Robert F. Kennedy Jr., a Michigan legislative aide cheered Rigas and her colleagues for taking a stand.

"Demonic Autism" Pastor is also a Book Burner

 In The Politics of Autism, I discuss various ideas about what causes the condition. Many posts have discussed the potential correlates, risk factors, and possible causes that have been the subject of serious studies.  Genetics tops the list.  One thing that is NOT on the list is demonic possession.  

Morgan Sung at NBC:

A far-right pastor hosted a book burning event, encouraging parishioners to toss books like "Harry Potter" and "Twilight" into a fire to denounce what he described as "demonic" materials.

Greg Locke, head pastor at Global Vision Bible Church, held a book burning event Wednesday night, and urged followers to burn "evil garbage" like young adult fantasy books, tarot cards, "voodoo dolls and crystals."

"Bring all your Harry Potter stuff. Laugh all you want haters. I don't care. IT'S WITCHCRAFT 100 PERCENT," Locke said in an Instagram post Monday. "All you 'Twilight' books and movies. That mess is full of spells, demonism, shape-shifting and occultism."

In a video livestreamed on Facebook, churchgoers hurl books and other items deemed associated with "witchcraft" into a massive bonfire on the church's parking lot in Mount Juliet, Tennessee. The burning begins about an hour into the livestream.

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This is not the first time Locke has made headlines. The pastor has been permanently banned from Twitter for spreading Covid vaccine misinformation. He previously described the vaccine as "sugar water" and said that he'd turn away churchgoers if they wore masks to his services. He also criticized Republican Tennessee Gov. Bill Lee as a "coward...noodle...waffler" for signing an executive order that would allow the National Guard to assist overwhelmed hospitals during a Covid outbreak. Locke claimed that children with autism are possessed by demons, insisting that the diagnosis doesn’t exist in the Bible.

Antimaskers Endanger Students with Disabilities

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

People with autism and other disabilities appear to be at higher risk from COVID.

Erica L. Green at NYT:

The opposition to masks has been particularly crushing for parents [Tennessee autism mom Kim] Hart, who see in-person schooling as a lifeline for their children with disabilities. Those students have been among the most underserved during the pandemic but also sometimes face a higher probability that going to school could make them severely ill.

Tennessee is one of seven states that the federal Education Department is investigating to determine whether governors’ orders allowing families to flout school mask mandates discriminate against students with disabilities by restricting their access to education.

Even though many local school boards, including Williamson County’s, have voted to require universal masking, an executive order issued by Gov. Bill Lee, a Republican, allows parents to send their children to school maskless, no questions asked. At the high school Ms. Hart’s son attends, data published weekly by the district shows that more than 30 percent of parents have formally opted out, a percentage that mirrors the district’s overall.

“We’ve always known that not everybody really cares about our children, but it is in our face right now — that it’s not worth you asking your child to wear a mask, so my child can be safe,” said Ms. Hart, who is a researcher and a trained epidemiologist. “That is the scar that I will carry from the pandemic, this playing out in my face over and over and over again.”

Parents of special education students in two Tennessee counties covering the eastern and western parts of the state have sued to block the governor’s order; one lawsuit has succeeded. A third, covering Williamson County, had a hearing before a judge this week.

In the most recent complaint, three lawyers argued that the governor, the Williamson County school board and a carve-out district within the county called the Franklin Special School District, are violating the rights of special education students by allowing parents to opt their children out of the mandate.

The suit was filed on behalf of a student with Down syndrome and another with Type 1 diabetes, but seeks protections for all “similarly situated” students. “Defendants’ actions have pitted children against children, while placing the health and safety of medically vulnerable children with disabilities in danger,” the complaint said.

Welcome Vaccine Reversals in Tennessee

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. 

Half of COVID vaccine rejectors think that vaccines in general cause autism.  Even when they take the vaccine, there could be a problem.

Brett Kelman at the Nashville Tennessean:

The Tennessee state government will resume all forms of vaccine outreach, with the narrow exception of social media posts aimed specifically at children, after halting many forms of advocacy this month in response to conservative pressure, the state's top health official said Friday.

Tennessee also faces a new “surge” of coronavirus that shows no signs of slowing, and deaths from the virus are expected to spike in coming weeks, the health official warned.

Health Commissioner Dr. Lisa Piercey said the Tennessee Department of Health will restart outreach efforts recommending vaccines for children and once again hold events on school property offering the COVID-19 vaccine, including some next week. Department staff are no longer instructed to strip the agency logo from public-facing vaccine information, she said.

“Nothing has been stopped permanently,” Piercey said during a press briefing. “We put a pause on many things, and then we have resumed all of those."

Piercey said her agency will also, in rare circumstances, provide the COVID-19 vaccine to minors without the permission of their parents. This statement is a contradiction to an announcement made this week by conservative lawmakers, who said Piercey agreed in a private meeting to stop this practice.

The Tennessee Department of Health drew nationwide attention this month after exclusive reporting by The Tennessean revealed the agency had dramatically scaled back efforts to promote the coronavirus vaccine to minors. The changes came after conservative state lawmakers lambasted the agency for gently recommending the vaccine to minors and proposed dissolving the entire agency to make the outreach stop.

 Martin Pengelly at The Guardian:

 A conservative radio host in Tennessee who urged listeners not to get vaccinated against Covid-19 has changed track and called on listeners to get the shot, after contracting the virus and ending up in hospital in “very serious condition”.

In a statement posted to social media, Phil Valentine’s family detailed his condition and said: “Please continue to pray for his recovery and PLEASE GO GET VACCINATED!”

The family also said the WTN host had “never been an ‘anti-vaxer’”, but “regrets not being more vehemently ‘pro-vaccine’ and looks forward to being able to more vigorously advocate that position as soon as he is back on the air, which we all hope will be soon”.

Valentine, 61, did, however, play down the need for vaccines and perform a song called Vaxman, to the tune of Taxman, George Harrison’s Beatles number against government taxation.

“Let me tell you how it will be,” he sang, “and I don’t care if you agree, ‘Cause I’m the Vaxman, yeah I’m the Vaxman. If you don’t like me coming round, be thankful I don’t hold you down.”

A Looming Disaster in Tennessee

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers. 

A couple of years ago, a Tennessee official pushed back hard when Rep.-elect Mark Green (R) pushed the myth.  Times have changed.

Aaron Blake at WP:

For about as long as certain Republicans and conservative figures have questioned the safety and efficacy of the coronavirus vaccines, those people have offered a disclaimer: They’re not “anti-vaxxers,” they’re just asking questions. And asking questions is valid. But those questions often devolved well into conspiracy theorizing and claiming the vaccine effort was something that it wasn’t, using dodgy data and innuendo that had the predictable result of making about half of Republicans say they aren’t getting the shot. And they did so with little pushback from pro-vaccine Republicans.

On Tuesday came perhaps the biggest example of where this often careless vaccine skepticism can lead. Tennessee’s Department of Health is reportedly going to stop not just encouraging minors to get the coronavirus vaccine, but also informing them about that vaccine — or any other vaccines.

...

This has been lurking beneath the surface for a long time. Former president Donald Trump before he became president repeatedly cited debunked links between vaccines and autism. GOP officials like Oklahoma Gov. Kevin Stitt (R) have also cast doubt on vaccines for children, with Stitt saying he didn’t get vaccinations for some of his children.

Until about a year ago, this was a much more bipartisan issue, with reservations about vaccination spanning from well-to-do West Coast liberals to more anti-government conservatives. What has transpired since then has been the anti-vaccine movement blowing up more on the right than the left, despite Trump having claimed credit for the production of the vaccine during his administration.

 

GOP officials in TN didn't want older teenagers to know they could be vaccinated without parental consent. Under pressure, the state health dept. removed posts telling teens they were eligible. And TN's vaccine chief says she was fired over the issue. https://t.co/b3AUHwC2R7

— Trip Gabriel (@tripgabriel) July 13, 2021

State and Federal Action

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

Nick Viviani at CNN:

On Monday, President Donald Trump signed into law the "Autism Cares Act."

The bill, which expands on the Combating Autism Act of 2006, "will fund critical biomedical autism research as well as the development of best practices to enhance the lives of persons with autism," according to Rep. Chris Smith (R-NJ), who along with Rep. Mike Doyle (D-PA) sponsored the bipartisan legislation.

It provides $1.8 billion in funding for autism programs at the Centers for Disease Control and Prevention, National Institutes of Health and Health Resources and Services Administration.

An August 3 release from Autism Speaks:

After more than a decade of advocacy by Autism Speaks, volunteer autism advocates and partners in the disability community, Tennessee is now the 50th state to take action clarifying that state-regulated health benefit plans must cover all medically necessary treatment for autism. On August 1, the Tennessee Department of Commerce and Insurance issued a bulletin requiring all individual, small and large group plans to cover medically necessary care for autism, including applied behavior analysis (ABA).

Reported Abuse of Autistic Children

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

A release from Vanderbilt University Medical Center:

A recent study by Vanderbilt researchers of 11 counties in Middle Tennessee revealed that children with autism spectrum disorder (ASD) were nearly 2.5 times more likely than children without ASD to be reported to the Child Abuse Hotline by the age of 8.

The study, led by researchers from Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), examined the entire population of Middle Tennessee residents born in 2008 and compared their records through 2016. Using data collected through the Centers for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network, 387 children out of the population of 24,306 were identified as having a diagnosis of ASD.

More than 17 percent of those identified with ASD had been reported to the Child Abuse Hotline by 2016, compared to 7.4 percent of children without ASD. Additionally, females with ASD were six times more likely to have substantiated allegations of maltreatment than males with ASD.Zachary Warren, PhD

...

According to Warren, children with ASD may be particularly vulnerable to maltreatment due to a variety of factors, including the presence of challenging behavior and complex cognitive and language impairments, increased caregiver stress, lower levels of family social support and higher rates of caregiver isolation and dependence.

Children with autism are also more likely to regularly work with a team of providers who may be paying closer attention than they would to children without ASD, though data from this study can’t confirm or deny these hypotheses.

“

How Tennessee Officials Responded to a Politician Spreading Vaccine Misinformation

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

Kimberlee Kruesi at Associated Press reports on how Tennessee's Department of Health responded to Mark Green, who had just won a US House seat and was spreading the bogus idea.  AP made a public records request and got emails.

Chief Medical Officer David Reagan shared a link to a story about the space agency extending an invite to Stephen Curry after the Golden State Warriors star denied humans had visited the moon. Curry quickly accepted the gesture and took back his comments, saying that he was joking, and believes the moon landing was no hoax.

"With regards to the statements by representative elect Green...an analogy from NASA," Regan wrote the morning of Dec. 13, attaching a link to NASA's invite.

"I like it," responded Tennessee Health Commissioner John Dreyzehner.

Dreyzehner then asked if Reagan was suggesting the department invite anyone to have their questions about vaccines answered by the chief medical officer.

"Yes, although I was specifically inviting Rep-elect Green," Reagan responded. "The discussion would likely be informative and helpful, and we may gain a friend."

Hours later, officials issued a blunt statement: "Vaccines do not cause autism. Vaccines save lives," along with an invitation, urging anyone with questions to contact the department. The brief statement didn't mention Green by name.

Pushback Against Reckless Congressman

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Natalie Allison at the Nashville Tennessean

A day after U.S. Rep.-elect Mark Green drew national attention for his remarks suggesting a possible link between vaccines and autism, another Tennessee Republican in Washington took a stand for the public health benefits of vaccinations.

"Vaccines take deadly, awful, ravaging diseases from horror to history," U.S. Sen. Lamar Alexander tweeted Thursday.

The senator's remarks were followed by a terse 30-word statement from the Tennessee Department of Health later in the day Thursday, beginning with the phrase "Vaccines do not cause autism."

Alexander, who chairs the Senate Health, Education, Labor and Pensions Committee, tweeted a quote from a video he shared of him previously speaking about vaccines in the committee.

"Sound science is this," Alexander said in the committee meeting. "Vaccines save lives. They save the lives of people that are vaccinated. They protect the lives of the vulnerable around them, like infants and those who are ill."

Green, a Republican state senator from Clarksville who is also a physician, will be sworn-in to the U.S. House of Representatives, his first term, Jan. 3.

Vaccines take deadly, awful, ravaging diseases from horror to history.

Vaccines save lives. pic.twitter.com/kewCNQTslM

— Sen. Lamar Alexander (@SenAlexander) December 13, 2018

Tennessee Department of Health Statement on Immunizations Thursday, December 13, 2018 | 04:29pm NASHVILLE – Vaccines do not cause autism. Vaccines save lives. The Tennessee Department of Health welcomes discussion with Tennessee clinicians and scientists who would like to examine the evidence on this topic. ###

Disgrace: Congressman-Elect Pushes Autism-Vaccine Notion

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Natalie Allison reports at The Nashville Tennessean:

A soon-to-be congressman from Tennessee told constituents Tuesday he believed vaccines may be causing autism, questioning data from the Centers for Disease Control and other institutions disproving such a theory.

Not only did Republican Mark Green, a Congressman-elect from Clarksville who is also a medical doctor, express hesitation about the CDC's stance on vaccines, he also said he believed the federal health agency has "fraudulently managed" the data.

His remarks came in response to an audience question at a town hall meeting in Franklin from a woman identifying herself as the parent of a young adult with autism. The woman was concerned about possible cuts to Medicaid funding.

"Let me say this about autism," Green said. "I have committed to people in my community, up in Montgomery County, to stand on the CDC’s desk and get the real data on vaccines. Because there is some concern that the rise in autism is the result of the preservatives that are in our vaccines.

Felicia Sonmez at WP:

Peter Hotez, dean of the National School of Tropical Medicine at the Baylor College of Medicine, said that it was shocking that a newly elected congressman “would openly espouse such blatant antiscience and discredited views.”

“The science is clear: Vaccines do not cause autism or the other things the antivaccine lobby alleges,” said Hotez, whose recent book, “Vaccines Did Not Cause Rachel’s Autism,” draws on his experience as a vaccine expert and the father of an autistic child.

He added that without Green’s “immediate reaction and heartfelt apology, he deserves censure or exclusion.”

A spokesman for Green did not respond to a request for clarification of the congressman-elect’s claim that the CDC’s data may have been “fraudulently managed.”

Green was recently elected president of the Republican freshman class. He last year withdrew as President Trump’s nominee for Army secretary amid criticism of his past comments about Islam, evolution and LGBT issues.

Autism Conference in Tennessee

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

The Chattanoogan reports:

Scott Kramer, an autistic adult and program director of the GCA Centre for Adult Autism (Centre), will be launching the first adult autism conference east of the Mississippi River. The Inaugural Tri-State Adult Autism Symposium Conference is the first autism conference east of the Mississippi to focus fully on adult autism themes (employment, independent living, social relationships, health and wellness, and research). The conference will be taking place on Saturday, July 22, in Chattanooga at Red Bank Baptist Church, 4000 Dayton Blvd.

Mr. Kramer talked with about 25 executive directors in the disability community from Tennessee, Georgia, and Alabama. "The overwhelming responses that the directors gave convinced me that I had found a 'gold mine of an opportunity' to reach out to the adult autism community in those three states." Formed with the idea of building community, Mr. Kramer recognized the need for this type of conference. "Countless numbers of autistic adults never had their social needs met in childhood, so those needs exist to this day. What this conference does is have social networking events take place the day before and day of the conference. By doing so, the social needs of these individuals can be better met."

"Approximately one to one and a half percent of this country's population is autistic. According to the U.S. Census Bureau in 2015, just over 77 percent of the country's population is at least 18 years of age. With a population of just 22 million people in the states of Tennessee, Georgia, and Alabama, roughly 190,000 autistic adults live in the area that the conference is focusing to serve," officials said.

For more information, contact Scott Kramer at 423-598-9516 or by email at Scott.Kramer@chattanoogaautismcenter.org 

Pleas on Medicaid and Autism

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Tennessee dads recently gathered in Nashville to send a message to Senators Bob Corker and Lamar Alexander. Andy Spears writes at Common Dreams:

The assembled dads each had letters about the importance of Medicaid for their own children.

One of the dads, John Shouse, had this to say:

Senator Alexander, Senator Corker, we gather here today as fathers, with Father’s Day mere hours away, to share with you our concerns with the course of action currently being set in Washington. We are fathers of children with disabilities. We are imploring you to vote to save Medicaid, and the other 'lifeline programs' that are currently facing unprecedented funding cuts. This is a course that, left unchecked, WILL have dire negative consequences for our sons and daughters.

Whether they are young children, or adults trying to find their way in the world now that their school years are over, our sons and daughters face tremendous challenges because of disability. Challenges that most people … even fathers such as yourselves … can hardly imagine.

Shouse spoke of his own experience, having a son with autism who benefits from Medicaid-funded programs.

An autistic person writes The Daily Gazette in Schenectady, New York:

I am 33 years old and I have Aspergers Autism, executive function disorder and I suffer from depression and anxiety.

I’m disabled on Social Security and Medicaid at the moment, I live alone but I get help with transportation and daily chores through an non-for profit called Wildwood.

For most of my adult life, I’ve been unemployed and very depressed. However, in recent years because of therapy, support from wildwood, and my medication I’ve begun to turn my life around. I’m going back to school to earn a culinary degree, I have part-time employment at a local business and am I much happier, healthier person.

Someday I want to get off disability, pay taxes, own a home and run a small business.
However, without my medication and support at moment I can’t do this. These past few years have been the best of my adult life. I can see my goals getting closer and closer to fruition. But if the Trump health care bill goes through, none of this will happen. I will sink back into depression and in action. I need Medicaid and I need the support right now or I will stay in the system forever.

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

Autism License Plates in Tennessee

One theme of the book I'm writing is that autism touches a bewildering array of policy areas.  For instance, what does autism have to do with automobiles and driving?  From The Chattanoogan:

The Tennessee autism community needs help getting the state’s first Autism Awareness license plate printed. Once a specialty plate project has been approved by the House and Senate, Tennessee requires 1,000 copies be pre-sold before it will be added to the DMV lineup of plates available.

The autism community has less than 150 left to pre-sell in order for this plate to be printed.

The Autism Awareness license plate was the project of four Tennessee moms. All four have children on the autism spectrum and wanted to spread autism awareness in a big way, while also raising money for the autism organizations that have touched their lives.

The funds from the license plate sales will support the missions of Autism Tennessee (formerly the Autism Society of Middle Tennessee), the Autism Society of East Tennessee and the Autism Society of the Midsouth, serving West Tennessee.

The organizations provide resources and supports to families living with autism.

License plates are $35.

For more information, or to order an Autism Awareness license plate, go to autismtn.org  

Autism Speaks Lobbies Southern States

Lorri Unumb blogs at Autism Speaks:

As Charlie Daniels would say, “The South’s Gonna Do It Again.” Notwithstanding that my own home state of South Carolina was an early leader in autism insurance reform, several Southern states are still lacking insurance coverage for autism treatments. As such, the Autism Speaks Advocacy Team has hit the road down south! We’re working in Tennessee, Georgia, North Carolina, and Mississippi as well as a handful of other states scattered around the country.

Judith Ursitti is spending time in Georgia, where Governor Nathan Deal recently put $2.4 million into his budget for state employee autism insurance coverage. Hooray! Shelly Hendrix was in Jackson,Mississippi this week to witness our autism bill unanimously pass through the House Insurance committee. Another hooray!

Earlier this week (and last week), I hit the legislative building in Tennessee to negotiate with a couple dozen lobbyists who oppose our autism insurance bill. I’ll be back in Nashville next week and the next week, and I’m looking forward to meeting lots of autism families there on Tuesday, February 4th, when our bill is being heard before the House Insurance and Banking Committee. I hope all the Tennessee autism families out there will come to the hearing that day and wear red! If you haven’t yet heard from Jennifer Sheridan, the autism mom and grassroots-organizer-extraordinaire in the photo below, I bet you will soon!

As for North Carolina, there was lots of activity in the fall, and I look forward to getting back to Raleigh soon! In the fall, I attended a wonderful luncheon for the ABC of NC autism program in Winston-Salem, at which Maya Angelou was the keynote speaker.

A Parent's View of IEPs

At The Daily News Journal in Murfreesboro, Tennessee, Nancy De Gennaro reports:

For children with special needs, including autism, an individualized education plan meeting should be set up explains Jennifer Kates, whose son, Harper, has autism.

“That’s just the plan every special education student has. It’s an individual plan for how that child needs to be educated,” she says. Kates suggests contacting the school’s special education teacher and assistant principal to set up the IEP.

When she first approached the school system regarding Harper’s autism diagnosis, she was armed with information and lots of paperwork, including a copy of the official diagnosis.

She attended orientation for Tennessee’s Support and Training for Exceptional Parents program (tnstep.org), which “basically educates parents of children with special needs.”

“If you’ve never been through the system and don’t know how laws work, you can get eaten alive,” says Kates, an English professor at Middle Tennessee State University. “You just have to know what your rights are, what you can ask for, and it’s your job to advocate. Sometimes people feel like you’re being rude. But really, educators and administrators don’t often know what your kids need… And every single child is different.”
...
Kates urges parents to visit autismspeaks.org and download the 100-day kit, which guides parents in the early stages of diagnosis. The kit includes a section on IEPs, too

Pediatric Training

A July 11 release by Vanderbilt University describes a new study in the journal Autism about a training program to enhance autism spectrum disorder (ASD) identification and assessment within Tennessee community pediatric settings.

After participating in training to learn strategies for conducting rapid diagnostic assessments following positive ASD screenings, pediatricians reported significant changes in their screening and consultation practices, with 85 percent reporting an increase in numbers of children with autism evaluated within their practice. The study also found that pediatric providers were nearly as accurate as specialists in their diagnoses, with agreement seen in more than 90 percent of all cases.

Despite screening initiatives, advocacy efforts and increased public awareness, the most recent Centers for Disease Control and Prevention data regarding autism prevalence suggest that the diagnosis is still not made until 4-5 years of age. The increased prevalence of autism and documented benefits of early intensive intervention have created a need for flexible systems for obtaining accurate, time-efficient diagnoses, the authors wrote.“Ideally, definitive early diagnosis of ASD would be rapidly accomplished by a team of developmental specialists, and children at risk for diagnosis would obtain services immediately after screening positive. The reality is that such diagnostic teams, or even individual professionals, are not available in most locations,” said corresponding author Zachary Warren, Ph.D., associate professor of Pediatrics, Psychiatry and Special Education and director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) at Vanderbilt University. “Even when available, the waitlists for diagnostic services are so long that children referred for evaluation wait extended periods of time for diagnosis. As a parent, I cannot fathom how stressful it would be to be told that your child may have autism, and we’ll let you know the answer to that question in six to 12 months.”

“Although the field has made great advances in early screening for autism, the steps taken after a positive ASD screening in community settings are much less clear and often problematic for clinicians, families and systems of care alike,” Warren said. “Essentially, more children are being referred for a very limited number of expert diagnostic assessment resources. Because of this, wide-scale screening for ASD at young ages may in fact increase wait times for diagnostic assessment. Given this context, it is critical to develop enhanced ASD-specific diagnostic training programs if we hope to shift the age of diagnosis and promote earlier access to early intervention.”

...

Key findings:

• Community pediatric providers were more likely to conduct independent autism assessments within their practice, rather than referring the child for outside evaluation.
• Community pediatric providers showed high agreement in ASD classification with expert clinicians.
• A dramatic shift was seen in pediatric providers’ sense of the appropriateness for a child to receive a diagnosis from his or her primary care provider, without or before a comprehensive evaluation.
• A dramatic shift in the comfort level of discussing ASD diagnoses with caregivers was seen.
• There was a significant increase in the number of diagnoses made within respective provider practices.

This study builds on pilot findings from 2009 by presenting a more comprehensive evaluation of the training model and utilizing a broader sample of pediatric providers.

Red Tape

Back in 2004, The New York Times reported: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance."  An often-overlooked challenge  is the sheer amount of red tape associated with obtaining and maintaining services. (Obviously, this problem affects independent adults on the spectrum as well as parents and other caregivers.)

In Murfreesboro, Tennessee, the Daily News Journal reports on Felicia Burk, who has three children on the spectrum.

“Trying to obtain services for a special-needs child is a never-ending process. ... Taking care of the children is much simpler than taking care of the paperwork,” says Burk, placing her hand on a stack of papers to keep it from teetering off the edge of the desk. “It’s very frustrating.”

The autism diagnosis alone can be overwhelming, says Holly Thornhill of Murfreesboro, Autism Speaks advocate and mother to Hunter, who has autism.

Knowing where to start can seem like an insurmountable task, she notes.

“The first thing you have to do is accept it. Being in denial will hinder a child. Swallow your pride and say, ‘We gotta deal with this,’” says Thornhill.

Thornhill suggests downloading the Autism Speaks 100 day kit. “It gives you peace of mind and tells you what step you need to take next,” Thornhill says. “You also need to get an IEP (Individual Education Plan) set up and you need to get involved with therapists to find whatever therapists your child is needing and get that therapy set up,” she adds.

The young mother started early. As a nursing student, she knew her son had developmental delays early on. So she contacted Tennessee Early Intervention Services (TEIS). “He was already getting therapy, although we didn’t have a diagnosis,” she says.

Denise White of Smyrna, also a nurse, pushed to get both her boys help early. Her 13-year-old son, Levi, and 9-year-old son, James, both have autism spectrum disorders. James struggles mainly with social issues while Levi is nonverbal. Both boys are on TennCare, the state’s Medicaid system, because they receive Supplemental Security Income. The boys receive medical and dental coverage and are also cover under their mother’s health insurance.

The only way White knew to apply for SSI at all is because the director of the special-needs daycare Levi attended suggested she do so.

“I showed proof of their disability back when they were 2. I had to show documentation from doctors, from their teachers and from other people who knew them, just about every single piece of paper I had on them,” says White, a single mother of three, including teenage Marian, who is not on the spectrum. “It was mainly to get them services they need, not just now, but when they are adults.”

TV Reports on Utah and Tennessee Mandate Bills

In Salt Lake City, KUTV covers the Utah mandate bill.

In Knoxville, WBIR covers the Tennessee mandate bill:

Column on Tennessee Mandate Legislation

At The Tennesseean, Gail Kerr writes about insurance mandate legislation in the state:

State Sen. Jim Kyle, D-Memphis, and state Sen. Jim Tracy, R-Shelbyville, filed almost identical bills. They have now signed on to each other’s and plan to push the legislation forward together. Kyle’s bill is sponsored in the House by state Rep. Gloria Johnson, D-Knoxville.
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Kyle acknowledged these types of bills “are difficult to pass.” Insurance lobbyists will almost certainly fight it, and lawmakers will be concerned about whether it will cost the state money to cover children served by TennCare.

But Kyle pointed out there is precedent for this type of law. His late aunt, state Sen. Anna Belle Clement O’Brien, worked to pass legislation requiring insurance companies to cover mammograms. It took her years, but she finally got it done. This is worth fighting for, Kyle said. To do that, he said, people impacted by autism need to make their voices heard.

“I just think folks who know folks need to step up and speak up to let the legislators know that this is something Tennessee children deserve no less than children in other states,” he said.

As for the potential cost to the state, Kyle said the coverage would begin on Jan. 1, 2014, meaning those costs might be picked up by the Affordable Care Act.