Anti-Vaxxer for Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.

At Right Wing Watch, Miranda Blue reports that an anti-vax activist spoke to the GOP national committeewoman from Iowa:

Tamara Scott, an Iowa conservative activist and Republican National Committee member, invited Eileen Dannemann, who runs an anti-vaxxer website called the Vaccine Liberation Army, to her “Truth for Our Time” radio program last week to discuss Dannemann’s concerns about vaccines. (Scott has invited anti-vaxxers onto her program before; in a previous interview with Dannemann, she alleged that “socialistic teaching” in schools, not parents who refuse to vaccinate their children, is causing disease outbreaks.)

Dannemann told Scott that attempts to investigate a CDC vaccine cover-up have so far been quashed, but that things will be different in a Trump presidency.

“With Trump as president, with Carson as the secretary of HHS and with Christie taking Lynch’s place [as attorney general], we have a team here that absolutely will investigate the CDC corruption and the safety of vaccines,” she said.

Sam Wessels Meets Chris Christie

In The Politics of Autism, I discuss the issue's role in presidential campaigns. 

Sam Wessels, a young Iowan with autism, has been asking presidential candidates about their positions on autism during the past couple of cycles.

At The RespectAbility report, Lauren Appelbaum writes:

...Sam Wessels, a 15-year-old boy with autism, asked the governor about the low employment rates for adults with autism. Christie answered by discussing how New Jersey is an Employment First state, going into more detail than the statements he made in New Hampshire in December.

“Everything we do in terms of our program is geared toward getting people prepared to work in jobs that are available and jobs that help them reach their full potential,” the governor said at Blue Bunny Ice Cream Parlor and Museum on Jan. 17. “We have to get out of the mindset that folks who are on the Autism spectrum can’t work. They absolutely can work. There are lots of jobs out there that they can do and do very well and feel fulfilled by doing everyday.”

“By making ourselves a Work First state, we have changed the way our Human Services, Health Department and our Department of Education deals with this issue, to put our resources behind trying to make sure that younger people and older folks are prepared as they go through the school-age years and as they age out as that part of the system to be able to be ready for employment and have our Department of Labor work with employers to educate them about what the capabilities and potential is of folks who are somewhere on the Autism spectrum,” Christie added

Autism and the 2016 Race

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.  I have also posted about Kasich,  Bush, Rubio, Christie, Paul, and Trump.

James Trout reports at The RespectAbility Report:

During the summer, my first event as a reporter was the Road to Majority Conference in Washington, D.C. After seeing Ohio Gov. John Kasich talk about how as governor he made sure that people on the Autism Spectrum would not be denied access to healthcare, I had an opportunity to talk him. I told him that as a person on the Autism Spectrum, I was grateful for him to mention people on the Autism Spectrum as people who need to be “brought out of the shadows.” He then bent over, hugged me, and told me “God is looking after you.” It was a true and genuine moment.

In New Hampshire and Iowa, I attended numerous town halls where I had the opportunity to ask many candidates questions on employment for people with disabilities, event and website accessibility, crime rate, and other important topics. From Florida Sen. Marco Rubio to former Maryland Gov. Martin O’Malley, and from former Florida Gov.Jeb Bush to Kasich, I helped draw attention to important issues, all while educating both the candidate and the press who were covering the campaign.

It took three attempts to speak to New Jersey Gov. Chris Christie during my New Hampshire travels. The first two events were in small places that were not easily accessible. During the third, a town hall at the Pelham VFW Post, I was not called on to ask a question. However, I had my opportunity during the rope line, andChristie talked about his state’s Employment First policy.

Now, I’m in Iowa covering disability issues leading up to the Iowa caucuses. I’m now being recognized by candidates! Last week,Kasich publicly commended me for my work in being a self-advocate and bringing these issues to the table. I also am working with local disability leaders to press candidates to not only talk about our issues but also to walk the walk by making websites and events more accessible.

ABLE Moves Ahead

The Politics of Autism includes a discussion of the ABLE Act.

The National Down Syndrome Society keeps a running list of states that have passed or are working on ABLE legislation

New Jersey Governor Chris Christie has signed ABLE legislation. Paul Nichols reports at The Bergen Record:

Legislation sponsored by Assembly Democrats Pamela Lampitt, Majority Leader Louis Greenwald, Valerie Vainieri Huttle, Daniel Benson and Vince Mazzeo to create tax-free savings accounts for individuals with developmental disabilities was signed into law on Monday.

The new law (A-3956) requires the Department of Human Services and the Department of the Treasury to establish the “New Jersey Achieving a Better Life Experience” (ABLE) program in accordance with the federal “Achieving a Better Life Experience Act of 2014,” which President Obama signed into law in December 2014. Under the program, individuals with certain disabilities will be permitted to establish ABLE accounts that may be used to pay certain disability-related expenses. ABLE accounts will be exempt from state income taxation and will not be included as an asset or income when determining the individual’s eligibility for state assistance programs.

A few days earlier, Autism Speaks reported:

Governor Andrew Cuomo has signed ABLE legislation that will allow families the opportunity to set up tax-free 529A savings accounts for disability-related expenses. The New York State Assembly and Senate passed the legislation in June.

The bill follows upon enactment by the federal government of the Stephen Beck, Jr., Achieving a Better Life Experience Act of 2014. Modeled after college savings accounts, ABLE accounts will enable people with autism and their families to save for housing, education, transportation, medical and other expenses if related to their disability. Assets in ABLE accounts will be exempt from a $2,000 cap on conventional savings accounts; exceeding that cap voids eligibility for Medicaid and Supplemental Security Income (SSI) benefits.

“We are grateful for Governor Cuomo’s support for ABLE in New York. New York families will have access to an important new financial tool for their loved ones with disabilities,” said Stuart Spielman, senior policy advisor and counsel at Autism Speaks. “This victory would not have been possible without the dedication of our grassroots network across the state and the leadership of Senator David Carlucci and Assemblymember Aileen Gunther.”

Anne Tergesen report at The Wall Street Journal:

A year ago, Congress created the 529 ABLE account, a savings vehicle for disabled people that offers the same tax-free growth available in 529 college-savings plans. Now, thanks to a tax law passed last month, consumers eligible to open a 529 ABLE account will be free to select a plan sponsored by any state, rather than being restricted to their home state’s plan.

That change will make it possible for people across the country to start one of these accounts as soon as the first state program opens for business—something that is likely to happen in the coming months.

...
For families that can fund a special-needs trust, deciding whether to use that or a 529 ABLE account—or both—is complicated. Because these trusts typically cost from $2,000 to $5,000 to set up, they often make sense only if there is at least $50,000—and potentially far more—available to invest, said [tax attorney Jamie] Canup.

With the trusts, investment gains are taxable. But families can make unlimited contributions without affecting a beneficiary’s eligibility for government benefits.

Perhaps the biggest downside to an ABLE account applies to beneficiaries who receive Medicaid. If beneficiaries die with money in ABLE accounts, a state has a right to seek repayment for Medicaid benefits received after creating the ABLE account. In contrast, when the beneficiary dies, a special-needs trust isn’t required to reimburse the state for Medicaid benefits—unless the beneficiary funded the trust with his or her own earnings or savings.

Pols and Vaccines

The New York Times reports:

Gov. Chris Christie’s trade mission to London was suddenly overshadowed on Monday after he was quoted as saying that parents “need to have some measure of choice” about vaccinating their children against measles. The New Jersey governor, who is trying to establish his credibility among conservatives as he weighs a run for the Republican nomination in 2016, later tried to temper his response. His office released a statement clarifying that “with a disease like measles there is no question kids should be vaccinated.”

 Senator Rand Paul of Kentucky, a physician, was less equivocal, telling the conservative radio host Laura Ingraham on Monday that parents should absolutely have a say in whether to vaccinate their children for measles.

“While I think it’s a good idea to take the vaccine, I think that’s a personal decision for individuals,” he said, recalling his irritation at doctors who tried to press him to vaccinate his own children. He eventually did, he said, but spaced out the vaccinations over a period of time.

... 

Asked about immunizations again later on Monday, Mr. Paul was even more insistent, saying it was a question of “freedom.” He grew irritated with a CNBC host who pressed him and snapped: “The state doesn’t own your children. Parents own the children.”

Nia-Malika Henderson reports at The Washington Post:

New Jersey Gov. Chris Christie (R) and Sen. Rand Paul (R-Ky.) both said Monday that they favor "choice" when it comes to whether parents get their kids vaccinated. This was seen by the Democratic National Committee as "kowtowing to the fringe rhetoric of the anti-vaccination movement."

"Chris Christie isn't a scientist. He isn't a doctor. And he sure as heck isn't a leader," DNC spokesman Mo Elleithee said. "If his campaign is going to be about kissing up to the radical, conspiracy theory base that’s wagging the dog of today’s Republican Party, that’s up to him and his cracker-jack team."

Here are some Democratic figures who might want to have a word with the DNC:

• Representative Elijah Cummings (D-MD)
• Representative Carolyn Maloney (D-NY)
• Robert F. Kennedy, Jr.

Andrew Kaczynski reports at Buzzfeed:

For more than two decades, Kentucky Sen. Rand Paul was a member of a group, the Association of American Physicians and Surgeons, that advocated a link between vaccinations and autism, among other conspiracy theories.

The AAPS, as Kentucky’s Courier-Journal noted in a 2010 article on Paul’s association with it, opposes mandatory vaccinations and promoted discredited studies, which linked the vaccine-component thimerosal to autism in children.

“Mandatory vaccines violate the medical ethic of informed consent. A case could also be made that mandates for vaccines by school districts and legislatures is the de facto practice of medicine without a license,” the group said in a fact-check.

Paul’s adviser, Doug Stafford, told BuzzFeed News he didn’t know if Paul was still a member of the group but that he joined because it was a group of pro-life doctors. He said Paul does not endorse all the group’s views.

Jane Orient, who handles media for AAPS, said she did not believe Paul had renewed his membership.

Christie and the Anti-Vaccine Movement

Philip Rucker reports at The Washington Post:

The morning after President Obama urged all parents to get their kids vaccinated against measles, New Jersey Gov. Chris Christie broke with the president and said the government must “balance” public health interests with parental choice.

Mary Pat and I have had our children vaccinated and we think that it’s an important part of being sure we protect their health and the public health,” Christie told reporters here Monday. But the likely Republican presidential candidate added: “I also understand that parents need to have some measure of choice in things as well, so that’s the balance that the government has to decide.”

Christie’s comments came after a laboratory tour at MedImmune, a biologics company that makes vaccines in Cambridge. Christie is on a three-day tour of Britain designed to promote trade with New Jersey businesses and round out his foreign policy resume ahead of a likely 2016 run for the White House.

Christie has been courting the anti-vaccine movement for a long time.  The issue is hot in New Jersey, which  has an unusually high rate of reported autism prevalence.  Representative Chris Smith (R-NJ) and Senator Bob Menendez (D-NJ) have been leaders on the issue in Congress.

\On November 3, 2009, Christian Newswire reported:

In an unprecedented and historic move, Chris Christie put pen to paper last week and made an official campaign promise to citizens of New Jersey in support of vaccination choice. He further cemented his position on live radio with Don Imus, by becoming the first gubernatorial candidate to utter the words vaccines, autism and parental choice in the same sentence. Vaccine choice supporters showed up in record numbers tonight to cast their vote for Christie.

"Tonight, vaccine choice advocates in New Jersey are proud to announce that vaccination choice is officially a voting block," says Life Health Choices Founder, Louise Kuo Habakus, who met with campaign leaders last December and kept the lines of communication open. "This election is a wake-up call to politicians nationwide. Vaccine choice belongs in the parents' house, not the Statehouse or the White House."

After receipt of the official Christie campaign promise on Friday, vaccination choice and autism advocates mobilized in force on the internet. They alerted tens of thousands of supporters, who in turn took to Facebook, Twitter, and their own support group networks to reach hundreds of thousands more. News of Christie's now famous statement spread like wildfire through the state and across the country:

"I stand by them now, and will stand with them as their governor in their fight for greater parental involvement in vaccination decisions that affect their children... Ending waste in government in order to improve care and services for these unique children and adults, as well as giving parents the choice they deserve in their children's health care decisions, will be top priorities."

State Officials Learn about the Spectrum

In North Dakota, The Jamestown Sun reports:

When Colin Vieweg goes to the mall, he feels like he’s in a jungle surrounded by howler monkeys all screaming at the same time.

“I just need to go away and stay away from the noise,” the Fargo 12-year-old said. “My mom says that’s because my brain processes noises differently than other people.”

Colin was one of several people who told state lawmakers Tuesday about what life is like living with Asperger syndrome, a developmental disorder on the autism spectrum.

The Human Services Committee is studying autism spectrum disorder and learning about the diagnosis, early treatment and care for individuals with the disorder. The committee is seeking recommendations on how to improve services and what changes the 2013 Legislature should consider.

Lawmakers asked to hear from North Dakotans with autism spectrum disorder to get a better idea of the challenges they face.

In New Jersey, the Star-Ledger reports:

Gov. Chris Christie today toured an autism treatment center that is using public education funds and private donations to teach life skills to 28 students and their families. Christie visited Somerset Hills Learning Institute during the campaign and returned to tout the Bedminster center's research-based approach.

"Of all the visits I made as candidate for governor in 2009 no place affected me personally more than this place," he said in a news conference in the center's lobby, adding: "It's places like this that are helping students and their families every day acquire the necessary skills to live and work as productive citizens of their communities."

Autism Schools?

An earlier post mentioned New Jersey Governor Chris Christie's proposal for autism schools. The New York Times reports that it has sparked debate:

“We’re horrified at this suggestion to have another segregated setting for children with autism in every county in New Jersey,” said Diana Autin, executive co-director of the Statewide Parent Advocacy Network, a nonprofit group that assists families. “It would also send a message to parents that children with autism can’t be included.”

But Linda Meyer, executive director of Autism New Jersey, a nonprofit advocacy and educational group, said Mr. Christie’s proposal for specialized autism schools would provide a much-needed alternative for some families. Many districts, she said, lack the staff, training and resources to educate children with autism.

“What I see is the governor has a vision to expand the continuum of options for our students,” Dr. Meyer said. “There are currently not enough high-quality school options for children with autism. Not every child is being educated in an effective program.”

WABC-TV in New York reports on a school that Christie visited:

Robin Hausman Morris writes at Examiner.com:

Full circle, the question remains: public vs. private. Governor Christie must take into account the very impact of what the future holds for adults with autism. How can he prepare our children, both those with autism and without special needs? How can a foundation be built for advancing the futures of our children, if they are segregated, seen and not heard?

The statement on the Advancing Futures for Adults with Autism website states:

“As a society, we have an obligation to secure a brighter future for individuals with autism spectrum disorders. By taking action now, we can ensure that adults with autism break free of the all-too-common status of “dependency” and become engaged, involved and ideally, tax-paying, members of their communities. It is time to develop and drive policies that provide for life-long living and learning with autism.”

Creating segregated schools might be a self-fulfilling prophecy. Our children will be further isolated as the years go by. This is a problem that requires creativity and tenacity, on both sides of the table.

Shannon Mullen writes in The Asbury Park Press:

Cindy Lee Parker of Tuckerton said her 16-year-old son, Jacob, who has autism, has already changed schools a half-dozen or so times. The prospect of yet another move, to an untested county school, did not sit well with her.

"What model are you going to use, and who's going to set the standard for that?" she asked. "Who decides how each county is going to teach autistic children?"

Parker likened the plan to "shooting in the air and hoping we hit something."

Another critic of Christie's proposal was Deborah Lewinson, executive director and founder of the Allegro School, a private autism school in Cedar Knolls, Morris County.

Lewinson said a network of county schools inevitably would limit parents' access to private schools like hers, which have extensive experience and provide many after-school services that public schools can't match.

Lewinson, who has an adult autistic son, also doubts that county schools could do the job any cheaper than private schools. Allegro's annual tuition is $$82,352 per student.

The out-of-district tuition fee at Southern Regional High School in Stafford, where Jacob Parker is a student, is $85,000 per year.

"It's a very intensive, expensive program, no matter where you do it," Lewinson said, referring to the one-on-one instruction that many autistic students require.

But Maria Arnold, educational services director at the Douglass Developmental Center, which operates an autism school on the Rutgers University campus in New Brunswick, believes Christie's idea is worth exploring.

"There's such a large number of children being diagnosed on the spectrum, there are too many of them to serve, and not enough programs," Arnold said. "We turn children away, the private schools turn children away. It shouldn't really be a competition, it should be a partnership."

Christie on Autism

The Newark Star-Ledger reports:

Gov. Chris Christie said he is exploring a plan to develop a school in each county that specializes in educating children with autism.

Responding to a question during a town hall meeting Thursday in Paramus, the governor said the idea has merit because it would offer a cost-effective alternative to cash-strapped communities trying to create their own special education curriculum for these students.

The idea, if developed, would also help families who have to research on their own which school district has the best program. The governor described the schools as "centers for excellence" in each county.

"The parents in this community know which districts are the best districts and they move to those districts," Christie said. "We’re having that kind of selection happen naturally so why don’t we just do it? I’ll be working with the new Commissioner of Education on that."

The news came as a welcome surprise to Linda Meyer, executive director of Autism New Jersey, a family advocacy and research group.

"We know the governor has prioritized education reform for everyone,’’ Meyer said. "It sounds like he is aiming for equality and access for all. He wants to increase access, not just those who live in certain zip codes.’’