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Sunday, November 18, 2018

The Autism Caucus Lost Many Members in This Cycle

In The Politics of Autism, I discuss the congressional role in the issue.

The Autism Caucus lost about one-fifth of its House members as a result of retirement, resignation, defeat, or election to other office.

Robert A. Brady (D) (Pennsylvania, District 01) retiring
Michael E Capuano (D) (Massachusetts, District 07) lost primay
Mike Coffman (R) (Colorado, District 06) lost general election
Barbara Comstock (R) (Virginia, District 10) lost general election
Ryan Costello (R) (Pennsylvania, District 06) retiring
Joseph Crowley (D) (New York, District 14) lost primary
John J Duncan Jr. (R) (Tennessee, District 02) retiring
Bob Goodlatte (R) (Virginia, District 06) retiring
Trey Gowdy (R) (South Carolina, District 04) retiring
Gene Green (D) (Texas, District 29) retiring
Darrell Issa (R) (California, District 49) retiring
Sander Levin (D) (Michigan, District 09) retiring
Jason Lewis (R) (Minnesota, District 02) lost general election
Frank LoBiondo (R) (New Jersey, District 02) retiring
Thomas MacArthur (R) (New Jersey, District 03) lost general election
Patrick Meehan (R) (Pennsylvania, District 05) resigned
Luke Messer (R) (Indiana, District 06) lost primary
Rick Nolan (D) (Minnesota, District 08) retiring
Erik Paulsen (R) (Minnesota, District 03) lost general election
Ileana Ros-Lehtinen (R) (Florida, District 27) retiring
Pete Sessions (R) (Texas, District 32) lost general election
Scott W Taylor (R) (Virginia, District 02) lost general election
Pat Tiberi (R) (Ohio, District 12) resigned
Tim Walz (D) (Minnesota, District 01) elected governor of Minnesota
Kevin Yoder (R) (Kansas, District 03) lost general election

In the Senate, Democrat Joe Donnelly of Indiana lost the general election

Kyrsten Sinema (D) (Arizona, District 09) left her House seat to run for the Senate, where she will probably remain in the Caucus.

Saturday, November 17, 2018

The West and the Antivax Movement


At The Conversation, Dr. Peter Hotez writes about the antivax movement.
Together with colleagues from Baylor College of Medicine and Texas Children’s Hospital, where I work, we did an in-depth study of kindergarten schoolchildren who receive vaccine exemptions across the country. Currently, 18 states allow nonmedical vaccine exemptions for either “conscientious objector” or “philosophical/personal belief” reasons. We were able to obtain information on 14 of those states.
A clear picture emerged: Vaccine exemptions are on the rise in 12 of the states we looked at. Indeed, anti-vaccine activities appear to be more of a western phenomenon, especially in the Pacific Northwest (Idaho, Oregon and Washington) and the American Southwest (Arizona, Missouri, Oklahoma, Texas and Utah).
What exactly is going on in the West, where many parents shun vaccines and take their children out of vaccination programs? Researchers are still at the early stages of understanding the reasons behind the anti-vaccine movement. A couple of these states, Oklahoma and Texas, host well-organized political action committees that lobby their legislatures and even raise campaign funds for candidates to endorse anti-vaccine positions. These committees appeal to parental fears of unwarranted government interference.
What’s more, some studies suggest that vaccine refusal is linked to affluence, and possibly with affluence there is greater access to the internet. There are now hundreds of anti-vaccine websites on the internet, many of which still allege that vaccines cause autism or that autism is a form of “vaccine injury,” neither of which is true.
The anti-vaccine movement also effectively uses social media to share their message. Some studies show that anti-vaccine social media has created an “echo chamber” effect that strongly reinforces negative attitudes towards vaccines.

Friday, November 16, 2018

Keeping All Students Safe Act

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

A release from Senator Chris Murphy (D-CA):
U.S. Senator Chris Murphy (D-Conn.), a member of the U.S. Senate Health, Education, Labor, and Pensions (HELP) Committee, joined U.S. Representatives Don Beyer (VA-8) and Bobby Scott (VA-3), ranking member of the U.S. House of Representatives Committee on Education and the Workforce, and U.S. Senator Patty Murray (D-Wash.), ranking member of HELP, on Wednesday in introducing the Keeping All Students Safe Act to protect students from the dangers of seclusion and restraint at school.

The legislation would make it illegal for any school receiving taxpayer dollars to seclude children. The legislation also limits the use of physical restraint to instances when it is necessary for the safety of students and teachers. The bill would establish minimum safety standards in schools, require states to monitor the law’s implementation, and increase transparency and oversight to prevent future abuse of students.
...
The legislation refers to key facts and findings that reveal a concerning history of seclusion and restraint of students in schools, including a 2009 Government Accountability Office (GAO) investigation that revealed hundreds of incidents of child abuse in schools as a result of seclusion and restraint practices that disproportionately impacted children with disabilities and children of color.
FACT SHEET: Keeping All Students Safe Act
SECTION BY SECTION: Keeping All Students Safe Act

Thursday, November 15, 2018

Public Charge

In The Politics of Autism, I explain how the issue connects with so many other issues.  Immigration is an example.

Zaidee Stavely at EdSource:
Hundreds of thousands of immigrant parents in California may disenroll their children from health insurance, food stamps and other federally subsidized programs because they fear that receiving these benefits will make it impossible for them to become permanent residents in the United States.
Their fears have been triggered by new regulations proposed by the Trump administration that expand the number of benefits that immigration officers can take into account in deciding whether to deny an immigrant permanent residence in the United States. Federal law allows immigration officials to deny green cards to immigrants if authorities decide they are likely to become a “public charge” — someone who relies excessively on government benefits to survive.

The draft regulations are currently open for public comments until Dec. 10th.
Administrators at community clinics, school-based health centers and agencies serving children say some parents in California are already choosing not to enroll or withdrawing their children from health and nutrition programs.
A parent asked First 5 Alameda, an agency that supports families with small children, to stop seeking early intervention services from a local school district for their toddler with autism.

Wednesday, November 14, 2018

House Committees


The Autism Society explains how the switch to Democratic control will affect committees in the House of Representatives:
Budget and Appropriations
Rep. John Yarmuth of Kentucky will likely take the helm of the Budget Committee. This committee has jurisdiction over the budget resolution. The change likely means the budget will not be used to force changes to important programs like Medicaid, Medicare and Social Security. Yarmuth has said he hopes to mark up a fiscal 2020 budget resolution that will reflect Democratic spending priorities such as infrastructure, education, job training, and clean energy.
Rep. Nita Lowey of New York is slated to chair the powerful Appropriations Committee. This committee decides where the money allocated from the Budget Resolution will be used to fund specific programs. The Subcommittee on Labor, HHS, Education will be chaired by Rep. Rosa DeLauro of Connecticut. This committee has jurisdiction over spending decisions most autism and other disability programs.
Energy and Commerce/Health Care
Rep. Frank Pallone Jr. of New Jersey is in line to be the next chairman of the Energy and Commerce Committee currently led by Rep. Greg Walden of Oregon. This Committee works on important issues like health care, including Medicaid. Under the leadership of Pallone, the House will push back on any attempts to repeal the Affordable Care Act or to make cuts to Medicaid; and could introduce bills to strengthen the ACA marketplaces and begin reviewing bills to provide universal health care. Rep. Pallone is also the author of a bill to provide long-term care to seniors and people with disabilities that may now get attention by the committee. This committee will also be responsible for reauthorizing the Autism CARES Act, one of the Autism Society’s biggest priorities for 2019 when the law is set to expire.
Ways and Means
The Chairmanship of the Ways and Means Committee will likely be Richard Neil of Massachusetts. This committee is responsible for tax and some health care programs. It is unclear at this time what tax bills will be considered. On health, top priorities include shoring up the Affordable Care Act exchanges and lowering the cost of prescription drugs. The retirement of Rep. Sander M. Levin (D-MI), opens up the top spot on the Health Subcommittee. California Rep. Mike Thompson is currently the panel’s most senior member and likely to take that seat.
Education and the Workforce
Rep. Robert Scott of Virginia is expected to chair the Education and Workforce Committee. This committee will be responsible for the reauthorization of the Higher Education Act (HEA) and any other education and employment bills. Scott authored an HEA bill (AIM Higher Act) that would promote the inclusion of students with autism. This committee will also likely to take up a bill to reduce the use of restraints and seclusion in schools. Bipartisan bills in development related to increasing opportunities for competitive, integrated employment may also be considered in this committee in the new Congress. Rep. Virginia Foxx of North Carolina is expected to remain on the committee as the ranking minority member.
Judiciary Committee
Rep. Jerrold Nadler of New York is poised to become the next chairman of the Judiciary Committee. This committee has jurisdiction over our civil rights laws, including the Americans with Disabilities Act. Nadler was an opponent of HR 620, a bill that would weaken the ADA.

Tuesday, November 13, 2018

Insurance Billing Codes

The Politics of Autism includes an extensive discussion of insurance.

From Autism Speaks:
New CPT codes for ABA billing have been announced by the American Medical Association CPT Editorial Panel. These codes will take effect on January 1, 2019.
Autism Speaks has worked for multiple years on the CPT Steering Committee seeking AMA approval of these new codes. We are happy to join the committee in helping you understand and implement the new CPT codes for ABA services.

What are CPT codes?
Current Procedural Terminology (CPT) is a listing of terms and identifying codes used to report medical services and to bill insurance providers. CPT codes are issued and maintained by the American Medical Association (AMA).
CPT codes are classified either as Category I (permanent) or Category III (temporary).

How have the CPT codes changed?
ABA codes were first approved in 2013 and fell under Category III (temporary).
A workgroup was formed shortly after in order to revise the code set. The CPT Steering Committee included Autism Speaks, the Association for Behavior Analysis International, the Association of Professional Behavior Analysts, and the Behavior Analyst Certification Board.
            In the fall of 2018, the new codes for ABA billing were announced with important changes:
Eight new Category I CPT (permanent) codes for ABA services were approved.
Two Category III (temporary) codes were revised.
Blythe Bernhard at Disability Scoop:
“We expect that it will expand the types of services that insurance companies reimburse for,” said Wayne Fisher, director of the Center for Autism Spectrum Disorders at the University of Nebraska Medical Center and a member of the steering committee made up of representatives from various autism organizations that worked on the coding changes.
With the move, the medical association will recognize ABA as medically necessary under appropriate circumstances, Fisher said.

Monday, November 12, 2018

Antivax Movement in New York and Oklahoma

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

Julia Belluz at Vox:
Anti-vaccine advocates have swayed parents in New York to refuse immunizations for their kids, sparking two of the largest measles outbreaks in the state’s recent history, according to local health officials.
As of Friday, 17 people in the neighborhoods of Williamsburg and Borough Park in New York City were confirmed with measles, along with 55 people in nearby Rockland County, for a total of 72 cases. Additional cases are currently under investigation, and the number is expected to rise.
What’s notable here is that all of the cases are occurring among unvaccinated or under-vaccinated Orthodox Jews, mainly children. When asked why people are opting out of vaccines, the city health department said anti-vaccine propagandists are distributing misinformation in the community.

The fearmongerers include the Brooklyn group called PEACH — or Parents Teaching and Advocating for Children’s Health — which spreads misinformation about vaccine safety, citing rabbis as authorities, through a hotline and magazines. Brooklyn Orthodox Rabbi William Handler has also been proclaiming the well-debunked link between the measles-mumps-rubella (MMR) vaccine and autism. Parents who “placate the gods of vaccination” are engaging in “child sacrifice,” he told Vox.
Last week, Republican Kevin Stitt won election as governor of Oklahoma.  In September, Sam Stein profiled him at The Daily Beast:
“I believe in choice,” Stitt said, “And we’ve got six children and we don’t vaccinate, we don’t do vaccinations on all of our children. So we definitely pick and choose which ones we’re gonna do. It’s gotta be up to the parents, we can never mandate that. I think there’s legislation right now that are trying to mandate that to go to public schools, it’s absolutely wrong. My wife was home schooled, I went to public schools, our kids go to Christian school, and that’s back to a parent’s choice.”

Stitt’s comments raise the specter that Oklahoma could water down immunization laws should he be elected the state’s governor this fall. They also place him within a growing fringe of politicians who have, in recent years, expressed skepticism over the prevalence of childhood vaccinations—a group that includes President Donald Trump himself.
“Kevin believes the topic of vaccinations is a serious decision that should be made by parents in consultation with their pediatricians,” said Donelle Harder, Stitt’s spokeswoman. She said that Stitt did not believe that vaccinations cause harmful medical side effects —an oft-argued and scientifically baseless claim from vaccine skeptics. The “root of his decision,” she said was the desire for parental choice
Such a position puts Stitt on the opposite side of public health advocates who have warned that immunizations must be a social contract in order to be medically effective. Anecdotal and scientific data has shown a direct correlation between vaccination hesitancy and the rise of diseases like measles.





Sunday, November 11, 2018

TRICARE and ABA

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.
Though TRICARE launched this ABA program in 2014, and has seen spending rise to $261 million annually, it’s still labeled a “demonstration” because the effectiveness of applied behavioral techniques for autism remains unproven, said Navy Capt. Edward Simmer, chief clinical officer of the TRICARE Health Plan.
“As of right now,” Simmer said, “Applied Behavioral Analysis does not meet TRICARE requirements for evidence-based coverage as part of the basic benefit. It still does not meet what we call the ‘hierarchy-of-evidence’ standard.”
...
First, ABA coverage coverage will continue through 2023 under a program extension approved earlier this year. Over that span TRICARE estimates that spending on ABA will rise to $430 million, the result of both medical inflation and a steady rise in number of children enrolled in the demonstration. Simmer estimates that only about half of all military children with autism currently receive ABA therapy.
A second notable development is that, at the direction of Congress, TRICARE is funding a $7 million research study, to run the length of the five-year extension. The purpose will be to learn how many ABA sessions are most effective.
...

Finally, Simmer said, TRICARE is broadening its autism program to encompass combinations of therapies, not solely ABA. The idea is to focus on “the whole child” while at the same time ensuring adequate support of parents whose involvement is seen as perhaps the most critical factor in effective therapy.


Saturday, November 10, 2018

Signs of Hope in France

In The Politics of Autism, I describe the need for comparative perspectives on the issue.  France, where psychoanalysis long dominated -- and severely hampered -- autism treatment, is worth a special look.  There are some signs of hope there.

At The Journal of Autism and Developmental Disorders,  Carol Sankey, Cyrielle Derguy Céline Clément, Jennifer Ilg, and Émilie Cappe have an article titled "Supporting Parents of a Child with Autism Spectrum Disorder: The French Awakening."  The abstract:
After being wrongfully blamed for their child’s disturbances, French parents of a child with autism spectrum disorder (ASD) are now perceived as essential partners of care professionals. This shift in perspective has encouraged the development of parent training programs in the field of autism. In this paper, we present three programs currently implemented in France for parents of a child with ASD. We investigated their social validity, from the parents’ perspective. All three programs showed good social validity: attendance rate was good and parents were satisfied. In France, like elsewhere, more parents should be given the opportunity to participate in such programs to help them deal with the specific challenges of raising a child with ASD.

Friday, November 9, 2018

Zinc

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlatesrisk factors, and possible causes that have been the subject of serious studies:

A release from Froniters in Molecular Neuroscience:
The emergence of autism in children has not only been linked to genes encoding synaptic proteins—among others—but also environmental insults such as zinc deficiency.
Although it is unclear whether zinc deficiency contributes to autism, scientists have now defined in detail a possible mechanistic link. Their research shows how zinc shapes the connections or 'synapses' between brain cells that form during early development, via a complex molecular machinery encoded by autism risk genes. Published in Frontiers in Molecular Neuroscience, the findings do not directly support zinc supplementation for the prevention of autism—but extend our understanding of its underlying developmental abnormalities, towards an eventual treatment.

"Autism is associated with specific variants of genes involved in the formation, maturation and stabilization of synapses during early development," says study senior author Dr. Sally Kim of Stanford University School of Medicine.
"Our findings link zinc levels in neurons—via interactions with the proteins encoded by these genes—to the development of autism."

Thursday, November 8, 2018

GAO Reports on Transition and Employment

In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
The Government Accountability Office has recently released two reports relating to the education and employment of people with disabilities.

STUDENTS WITH DISABILITIES: Additional Information from Education Could Help States Provide Pre-Employment Transition Services
Of the 74 state vocational rehabilitation (VR) agencies that responded to GAO's survey, most reported expanding services to help students with disabilities transition from school to work as required under the Workforce Innovation and Opportunity Act (WIOA), enacted in July 2014. Most state agencies reported serving more students and providing work-based learning experiences and other activities, referred to as pre-employment transition services (see figure).
Number of Agencies That Reported Serving More Students Since July 2014
Number of Agencies That Reported Serving More Students Since July 2014

Additional Federal Information Could Help States Serve Employers and Find Jobs for People with Disabilities
State vocational rehabilitation (VR) agencies reported expanding services for employers in order to promote hiring individuals with disabilities in mainstream employment (where they are integrated with employees without disabilities and earn competitive wages), but the Department of Education (Education) has not fully addressed related challenges. Most VR agencies in GAO's survey reported providing specific employer services under the Workforce Innovation and Opportunity Act (WIOA) (see figure). However, many agencies reported challenges meeting employers' needs and promoting mainstream employment. For example, some did not fully understand when they are allowed to help employed individuals with career advancement. Education has provided related guidance, including disseminating information at conferences. However, officials at two of three VR agencies GAO spoke with said more information would be helpful. Increasing access to this information may help more VR agencies understand when they have the option of using VR funds for such services.
Types of Employer Services Provided by Most State Vocational Rehabilitation Agencies
Types of Employer Services Provided by Most State Vocational Rehabilitation Agencies

Tuesday, November 6, 2018

Disability Voter Resources

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

Autism mom Susan Senator created a booklet for her son titled "Voting is really important. Here's how to do it."

Lauren Appelbaum at RespectAbility:
As voters head to the polls, many are concerned about various access issues from physical accessibility to voter ID laws. This is a federal election year; additionally, many state legislative seats, state executive offices, local offices and ballot amendments will be voted on. We’ve compiled resources provided by general Election Day voter rights organizations as well as those provided by various disability groups.
See below for apps and information on where to vote, how to vote and who to contact in case there is an issue. Voters with disabilities have every right to vote. If you have a problem voting due to lack of access for disability, contact 866-OUR-VOTE to talk to lawyers on hand to answer Election Day questions and concerns about voting procedures, or other resources listed below, immediately. Please let us know as well by emailing LaurenA@RespectAbility.org. Did we miss an important resource? Share with us and we’ll update this guide.
Election Day Assistance
Rock the Vote has several online tools that simplify and demystify voter registration and elections. Follow the links below for more on how to claim your vote!
The U.S. Election Assistance Commission created a tip sheet to help voters with disabilities vote privately and independently.
Easter Seals, AAPD and the REVUP campaign created a checklist for voters with disabilities. Download their voting resource card to take with you to the polls! The American Association of People with Disabilities (AAPD) has compiled an extensive voter resource center to help people register to vote, learn about the issues and organized the disability vote. The REV UP campaign, a project of AAPD, aims to increase the political power of the disability community, while also engaging candidates and the media on disability issues. One Vote Now, a collaborative project between National Association of Councils on Developmental Disabilities, DREDF, AAPD, RespectAbility and the National Disability Rights Network, is working to enhance the voting bloc of people with disabilities.
The Voting Information Project supports a SMS Tool that provides voters with election information via text message. By texting “VOTE” or “VOTO” to GOVOTE (468-683), voters can find polling places, contact information for local election officials, and registration URLs. The app is available in multiple languages.
The Bazelon Center for Mental Health Law, in partnership with several other disability advocacy organizations, published A Guide to the Voting Rights of People with Mental Disabilities. This newly updated guide lists key legal principles, provides information about state laws and practices that limit the voting rights of people with mental disabilities, and offers tools to help people with disabilities preserve or restore their voting rights. Learn more: www.bazelon.org/our-work/voting.
Need help getting to the polls?
In addition to contacting your local candidates’ office, reach out to Carpool Vote, a service connecting volunteer drivers with anybody who needs a ride to claim their vote. Transportation often is a factor for why people with disabilities do not vote and Carpool Vote is aiming to change that.
  • Offer to drive or request a ride online: http://carpoolvote.com
  • For help using Carpool Vote, call or SMS: 804-424-5335
In addition, the National Federation of the Blind (NFB) is partnering with Lyft, a popular ride-hailing app, to help blind voters get to the polls. Lyft has provided NFB’s national headquarters with a number of promotion codes, worth $15 each, which are being distributed through eleven of their affiliates: Colorado, Massachusetts, Maryland, Nevada, Ohio, Tennessee, Texas, Utah, Virginia, Washington and Wisconsin. Contact your affiliate president if you could benefit from one of these codes, contact information is here: complete list of our affiliates and their leaders.
What if I go to the polls and they tell me I am not registered to vote?
First, make sure you are at the right polling place. If you are at the wrong polling place, they will not have your name on list of voters. If you are at the correct location and are not on the list, you still can cast a ballot. Ask the poll worker for a provisional ballot. After the polls close on Election Day, the state will check on the status of your voter registration and if there was a mistake made. The state must notify you as to whether your ballot was counted.
On Election Day, if I think my rights have been violated, what should I do?
If you have any questions at the polls, first ask an election official on site for assistance. If they are unable to assist or if you believe they violated your voting rights, then contact the Election Protection Coalition, a nonpartisan coalition working year-round to advance and defend your right to vote. They have lawyers standing by to answer your call:
  • Visit 866ourvote.org
  • 866-OUR-VOTE (866-687-8683) – English
  • 888-VE-Y-VOTA (888-839-8682) – Spanish
  • 844-YALLA-US – Arabic
  • 888-API-VOTE (888-274-8683) – Chinese, Vietnamese, Korean, Bengali, Hindi, Urdu or Tagalog
  • 301-818-VOTE – American Sign Language
  • Text “Our Vote” to 97779
Other Resources:
State Protection and Advocacy Voter Assistance Hotlines
The National Council on Independent Living compiled a directory of Protection and Advocacy voter assistance hotlines that address the voting barriers specifically affecting voters with disabilities, listed by state:
  • Alabama: Alabama Disabilities Advocacy Program – (205) 348-4928
  • Alaska: Disability Law Center of Alaska – (800) 478-1234
  • American Samoa: Office of Protection & Advocacy – (684) 633-2441
  • Arizona: Arizona Center for Disability Law – (602) 274-6287
  • Arkansas: Disability Rights Arkansas – (800) 482-1174
  • California: Disability Rights California – (888) 569-7955
  • Colorado: Disability Law Colorado – (303) 722-0300
  • Connecticut: Disability Rights Connecticut – (860) 297-4300
  • Delaware: Community Legal Aid Society, Inc. – (302) 575-0660
  • District of Columbia: Disability Rights DC – (202) 547-0198
  • Florida: Disability Rights Florida – (800) 342-0823
  • Georgia: The Georgia Advocacy Office – (404) 885-1234
  • Guam: Guam Legal Services – (671) 477-9811
  • Hawaii: Hawaii Disability Rights Center – (800) 882-1057
  • Idaho: Disability Rights Idaho – (208) 336-5353
  • Illinois: Equip for Equality – (800) 537-2632
  • Indiana: Indiana Disability Rights – (800) 622-4845
  • Iowa: Disability Rights Iowa – (800) 779-2502
  • Kansas: Disability Rights Center of Kansas – (877) 776-1541
  • Kentucky: Kentucky Protection & Advocacy – (800) 372-2988
  • Louisiana: Advocacy Center – (800) 960-7705
  • Maine: Disability Rights Maine – (800) 452-1948
  • Maryland: Disability Rights Maryland – (443) 692-2492
  • Massachusetts: Disability Law Center, Inc. – (800) 872-9992
  • Michigan: Michigan Protection & Advocacy Services – (800) 288-5923
  • Minnesota: Minnesota Disability Law Center – (800) 292-4150
  • Mississippi: Disability Rights Mississippi – (601) 968-0600
  • Missouri: Missouri Protection & Advocacy – (573) 893-3333
  • Montana: Disability Rights Montana – (406) 449-2344
  • Nebraska: Disability Rights Nebraska – (800) 422-6691
  • Nevada: Nevada Disability Advocacy & Law Center – (888) 349-3843
  • New Hampshire: Disability Rights Center New Hampshire – (800) 834-1721
  • New Jersey: Disability Rights New Jersey – (609) 292-9742
  • New Mexico: Disability Rights New Mexico – (800) 432-4682
  • New York: Disability Rights New York – (800) 993-8982
  • North Carolina: Disability Rights North Carolina – (877) 235-4210
  • North Dakota: North Dakota Protection & Advocacy – (701) 328-2950
  • Ohio: Disability Rights Ohio – (800) 282-9181
  • Oklahoma: Oklahoma Disability Law Center, Inc. – (800) 880-7755
  • Oregon: Disability Rights Oregon – (888) 339-VOTE
  • Pennsylvania: Disability Rights Pennsylvania – (215) 238-8070
  • Puerto Rico: Office of the Governor/Ombudsman for Persons with Disabilities – (787) 725-2333
  • Rhode Island: Rhode Island Disability Law Center – (401) 831-3150
  • South Carolina: Protection & Advocacy of South Carolina – (866) 275-7273
  • South Dakota: Disability Rights South Dakota – (800) 658-4782
  • Tennessee: Disability Rights Tennessee – (800) 342-1660
  • Texas: Disability Rights Texas – (888) 796-VOTE
  • Utah: Disability Law Center – (800) 662-9080
  • Vermont: Disability Rights Vermont – (800) 834-7890
  • Virgin Islands: Disability Rights Center of the Virgin Islands – (340) 772-1200
  • Virginia: disAbility Law Center of Virginia – (800) 552-3962
  • Washington: Disability Rights Washington – (800 562-2702
  • West Virginia: Disability Rights West Virginia – (304) 346-0847
  • Wisconsin: Disability Rights Wisconsin – (844) DIS-VOTE
  • Wyoming: Wyoming Protection & Advocacy System – (877) 249-6167

Monday, November 5, 2018

"Vaccine Freedom PACs"

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

At Wired, Megan Molteni writes of Dr. Ervin Yen, a moderate Oklahoma legislator who who sponsored a bill to require vaccination of schoolchildren.  He lost his 2016 GOP primary to an antivaccine opponent.
In other hotbeds of anti-vaccine sentiment, centrist conservatives who’ve championed similar bills have also been conspicuously missing from this year’s midterm ballots. Replacing them are candidates backed by well-financed organizations made up of members who either entertain the fraudulent science linking vaccines to autism, who believe their kids have had adverse vaccine reactions, or think the government shouldn’t dictate what goes in their children’s bodies.
...
In the 18 states that currently permit parents to send their unvaccinated children to public schools on the grounds of philosophical objections, “Vaccine Freedom” PACs are increasingly flexing political muscle to keep it that way. By making a broader appeal to parental rights, some groups are now pushing agendas that would eliminate vaccine mandates of any kind. And as they shape this year’s election ballots to be more favorable to their cause, the nation creeps ever closer to an infectious disease outbreak as inevitable as it will be tragic.
...
On Tuesday, Americans will head to the polls to cast their votes in what may be the most consequential midterm elections in modern US history. While all eyes will be on the national races that could shift power in Washington, just as crucial are the state legislative elections taking place further down the ballot. States are the battlefields where the Trump administration’s war on science, regulations, the environment, and the rights of minorities are increasingly being fought. They are where decisions about vaccines as a cornerstone of 21st-century public health policy get made.
The good news is that laws work. When California got rid of personal belief exemptions in 2015, only 90.4 percent of kindergartners in public schools were fully immunized. In the 2017-18 school year, 95.1 percent of kindergartners had all their immunizations, according to the California Department of Health. The bad news is, California is one of only three states to have such strict requirements.
As vaccine freedom PACs move from the margins to mainstream, more and more kids are going to school unvaccinated. Data released in October from the Centers for Disease Control and Prevention showed that while national exemption rates remain low at 2.2 percent, this is the third year that exemptions have increased. At least where vaccinations are concerned, where California goes, the nation does not seem to be following.

Sunday, November 4, 2018

Subtle Barrier to Voting

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

At WFPL-FM In Louisville, Lisa Gillespie reports that complaints about voting access can lead to change.
That’s what happened in the case of 26-year-old Lexington resident Amelia Mullins, who has severe autism and gave permission for her mother, Wendy Wheeler-Mullins, to speak on her behalf.

“When [Amelia] gets anxious, she tends to recite TV shows and movies, verbatim, kind of a self-calming mechanism,” Wheeler-Mullins said. “I think that’s what made the people look at us like, this person doesn’t have a brain in her head, she shouldn’t be voting.”
The two had a particularly bad voting experience in 2015, where they faced what Wheeler-Mullins called “judgmental, skeptical” looks from poll workers.
“I just got the impression that they thought like, I was trying to buy her vote or something,” Wheeler-Mullins said. “They didn’t stop her from voting, but their behavior would have been a discouragement to someone from voting.”
Wheeler-Mullins said she complained and was told poll workers would be spoken with and receive more training.

Saturday, November 3, 2018

Autism Hype

In The Politics of Autism, I discuss various ideas about what causes the condition and how to treat it.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. 

In the worst scenarios, families inspired by media coverage may pursue treatments that are both ineffective and unsafe. This has been the case with MDMA, or 3,4-methyldioxymethamphetamine, otherwise known as ecstasy, to treat social anxiety in autistic adults. Much media coverage of this experimental treatment failed to report that the drug is neurotoxic in animal models and humans, and that a “safe” dose has not been established. As a result, the public received complete misinformation via mainstream media outlets. The false hope of MDMA might have led some in the autism community to pursue an illegal—and, more importantly, potentially lethal—intervention.
...
. In another case, the headline “Stem Cells Offer Hope for Autism” might have encouraged families to travel to international sites with unregulated medical practices to obtain this therapy, which is still unproven. Conversely, the media is largely missing the mark on the potential of medical marijuana, confusing different cannabinoids and mixing up indications in their headlines. This type of misinformation will only serve to stifle badly needed research into phytocannabinoids in marijuana that do, in fact, show promise for treating epilepsy, which commonly co-occurs in children with autism.

Friday, November 2, 2018

Vaccines, Autism, and a California State Senate Race

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

In next week's election, California State Senator Richard Pan (D) faces antivax fringe candidate Eric Frame.  Sammy Caiola reports at Capital Public Radio:
The two candidates are vying for Pan’s Senate seat in district 6, which encompasses parts of Sacramento and Yolo counties. Pan is a pediatrician known for authoring a law banning the personal-belief exemptions that previously let parents opt out of vaccines for their kids. Now, those parents must get certain shots if they want their children to attend school. And Frame wants to see those exemptions put back in place.
...
Major health and science organizations have stated that vaccines given to children have only minor side effects. And theories about vaccines causing autism have been debunked.
But a small and active contingent of parents in California still believe in the link between vaccines and autism. Some groups are actively trying to overturn Pan’s law, which took effect in 2016.
Frame is aligned with those groups. “So, when parents are, at the moment, forced to choose to give another vaccine to a child that has already had an adverse reaction, or take them out of public school and figure out a way to homeschool them, I think that’s a terrible choice to have to make,” he said.
Pan received 66 percent of votes in the district’s primary election this past June, and Frame received 13 percent. While Frame is unlikely to beat the incumbent, his messaging is being shared by vaccine skeptics on social media.
Dr. Pan is virtually certain to win by a huge margin.  Two years ago, antivax people attempted a recall effort but could not even get enough signatures to get it on the ballot. 

Thursday, November 1, 2018

Medical Exemptions in California

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

At Pediatrics, Salini Mohanty and colleagues have an article titled "Experiences With Medical 
Exemptions After a Change in Vaccine Exemption Policy in California."  The abstract:
OBJECTIVES: In 2015, California passed Senate Bill 227 (SB277), eliminating nonmedical vaccine exemptions for school entry. Our objective for this study was to describe the experiences of health officers and immunization staff addressing medical exemption requests under SB277.
METHODS: We conducted semistructured telephone interviews between August 2017 and September 2017 with health officers and immunization staff from local health jurisdictions in California. Interviews were recorded, transcribed, and analyzed for key themes.
RESULTS: We conducted 34 interviews with 40 health officers and immunization staff representing 35 of the 61 local health jurisdictions in California. Four main themes emerged related to experiences with medical exemptions: (1) the role of stakeholders, (2) reviewing medical exemptions received by schools, (3) medical exemptions that were perceived as problematic, and (4) frustration and concern over medical exemptions. Generally, local health jurisdictions described a narrow role in providing support and technical assistance to schools. Only 5 jurisdictions actively tracked medical exemptions received by schools, with 1 jurisdiction facing a lawsuit as a result. Examples were provided of medical exemptions that listed family history of allergies and autoimmune diseases as contraindications for immunization and of physicians charging steep fees for medical exemptions. Participants also reported concerns about the increase in medical exemptions after the implementation of SB277.
CONCLUSIONS: Participants reported many challenges and concerns with medical exemptions under SB277. Without additional legal changes, including a standardized review of medical exemptions, some physicians may continue to write medical exemptions for vaccine-hesitant parents, potentially limiting the long-term impact of SB277


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