Autism Mandate Fails in SD Committee

The Politics of Autism includes an extensive discussion of insurance.

At KELO-TV, Angela Kennecke reports:

For parents of children with autism, coverage for Applied Behavior Analysis was anything but guaranteed. In 2015, the South Dakota legislature passed a bill requiring insurance companies cover ABA therapy. But insurance companies have now discovered a loophole in the law that's allowing them to drop the coverage for many children with autism.

Here's the loophole: the 2015 South Dakota law does require Applied Behavior Analysis be covered for children with autism in large insurance pools made up of 50 people or more. But it did not require that those who are part of small groups or hold individual policies get the same coverage.

In Sioux Falls, KSFY-TV reports:

The House State Affairs committee Wednesday killed a bill that would mandate South Dakota health insurers include autism and spectrum disorders in their coverage.

SDBA reports the committee took 90 minutes of often emotional testimony late Wednesday afternoon before calling a 7-4 vote to send the bill to the 41st day, effectively killing the bill.

Supporters from across the state packed the Capitol building’s largest committee room sharing stories of the personal and financial impacts of caring for children with autism.

Opponents, including the South Dakota Division of Insurance and Sanford Health Plans, testified that the bill is a mandate and would require the State of South Dakota pick up as much as $1.4 million or more in costs.

As the vote was called, many of the supporters in the room broke down in tears.
KSFY News earlier this month spoke with two different Sioux Falls parents who were pushing for this insurance coverage.

The Cliff and the Tsunami

In The Politics of Autism, I write:

Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.

Noah Remnick at The Atlantic writes about "the cliff."

About half a million people on the autism spectrum will legally become adults over the next decade, a swelling tide for which the country is unprepared. When they turn 21, these people leave behind all the programming and funding they received under the Individuals With Disabilities Education Act and enter a labyrinth of government services that vary wildly from state to state. Although people with other disabilities face similar problems, the staggering rise in diagnoses of autism creates a distinctly troubling dilemma in how to ensure that these people receive proper care.

 Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about.

Remnick writes:

What happens when people with autism age into adulthood remains understudied. Researchers predominantly focus on early intervention—less than 2 percent of all autism funding is directed to the experience of adulthood and aging—even though people with autism spend a vastly greater proportion of their life as adults. The existing findings are dismaying. About half of adults with autism continue to grapple with aggressive, self-injurious behaviors as they get older, and about half are also unemployed—the lowest employment rate among disability groups. Especially for those with greater challenges, it is more difficult to attain the basics necessary to live a comfortable life: housing, job training, and social opportunities.

Inequality and complexity are also major themes of The Politics of Autism.

Remnick again:

In general, adults with disabilities are eligible for resources through Medicaid, Supplemental Security Income, and various state disability agencies. These funds are meant to be combined and configured to fit the needs and priorities of each person, going toward everything from employment opportunities and day services to long-term care. But in reality, all the layers of bureaucracy often seem to tangle together for families. Individuals have to be certified separately by a variety of different agencies, all of which require their own documentation and have their own criteria for approval. Safeguards intended to protect adults with disabilities from being exploited often stymie parents and cost them money they simply do not have.

“There’s not enough funding in the first place, but even so, a ton of money is left on the table because this system is just so difficult to navigate,” says [Julie Lounds] Taylor, the Vanderbilt professor. “It’s nearly impossible for full-time professionals with a great deal of resources. I can’t even imagine what it must be like for families who are less well resourced.”

More Measles

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Antivax sentiment has been strong in the Pacific Northwest.

From CDC:

From January 1 to February 14, 2019, 127** individual cases of measles have been confirmed in 10 states.

The states that have reported cases to CDC are California, Colorado, Connecticut, Georgia, Illinois, Kentucky, New York, Oregon, Texas, and Washington.

*Cases as of December 29, 2018. Case count is preliminary and subject to change.
**Cases as of February 14, 2019. Case count is preliminary and subject to change. Data are updated weekly.

The Antivax Danger

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

Microbiologist Paul Duprex at The Conversation:

What one of the most infectious pathogens on the planet can do to an unvaccinated person in 2019 is biologically incredible. Yes, that’s right, an unvaccinated human. But why would anyone decide not to get vaccinated or refrain from protecting their children?

That’s because forgetting the past has precipitated selective amnesia in our post-measles psyche. Ignoring scientific facts has tragically brought us to a place where some people fail to appreciate the values and utility of some of the most phenomenal tools we have created in our historical war on infectious disease. Unsubstantiated claims that vaccines like MMR were associated with autism, multiple sclerosis, Crohn’s disease, etc., etc., and ill-informed celebrities have wreaked havoc with vaccination programs. Genuine, caring parents unaware of the realities of diseases they had never seen decided that since the viruses were gone from this part of the world shots were so last millennium. Put simply, some people have given up on vaccines.

This has created the perfect storm. Since the measles virus is so infectious and Europe, Africa, South America, and South East Asia are not really that far away by jumbo jet, a case somewhere in the world can lead to an infection anywhere in the world. Failure to vaccinate large groups of people is helping measles come back. From California, to New York from Washington state to Minnesota and Georgia, measles is back with a vengeance. Now we can only live in hope that the last death from this deadly disease in the U.S. remains from 2015. Unfortunately, that is not a given.

Dr. Arthur Caplan writes at NBC:

There are stupid statements. And then there are statements so outrageous, so ridiculous and so dangerous that they standout with startling clarity. This week, just such a rare instance occurred. In the middle of a concerning measles outbreak in Washington state, and with cases being reported in many other regions, Darla Shine, the wife of former Fox News bigwig and current deputy chief of staff for communications in the Trump administration Bill Shine said that childhood diseases such as measles "keep you healthy & fight cancer."

...
The idea that getting infectious diseases helps one acquire “natural” immunity as opposed to the “unnatural immunity” provided by vaccines is a pernicious lie. Shine went so far as to suggest cancer can be battled by an immune system strengthened by measles. She should tell that to the thousands and thousands of people who have died from a myriad of cancers and who also had chicken pox or measles as children. As anyone even vaguely familiar with cancer knows, cancer couldn’t care less about the measles, vitamins or other mythical notions of immunity. It is nothing short of cruel to suggest that women who inherit breast cancer should have been more willing to catch chicken pox.

Russian Trolls

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Russian trolls have spread the myth via social media.

Ron Synovitz at Radio Free Europe/Radio Liberty:

Studies have already documented how cybercampaigns by the Internet Research Agency -- a St. Petersburg "troll farm" that has been accused of meddling in the U.S. 2016 presidential election -- artificially bolstered debate on social media about vaccines since 2014 in a way that eroded public trust in vaccinations.

Now, the World Health Organization (WHO) is warning that "vaccination hesitancy" has become one of the top threats to global health.

It notes a 30 percent rise in measles globally and a resurgence of measles in countries that had once been close to eradicating the disease.

The article quotes Rober Califf, director of Duke University's center for health data, The Forge.

He said combating misinformation campaigns about vaccines had become more complex now that research is demonstrating that a large amount of the social-media posts represent what he called "state-sponsored cyberwarfare, particularly from Russia."

Katharina Kieslich, a political scientist at the University of Vienna, has written that "vaccination hesitancy might be explained from a political-science perspective."

Kieslich says the pervasiveness of anti-vaccination arguments ensures that challenges will remain for policymakers and health workers trying to reach "citizens who are skeptical of vaccines.".

GWU management professor David Broniatowski, has explained how Russi'as Internet Research Agency has spread vaccine disinformation.

Broniatowski tells RFE/RL he hasn't seen any evidence that Russia has tried to weaken Western democracies by persuading people to stop vaccinating. Rather, known trolls masqueraded as legitimate users on social media and debated vaccines as part of their strategy to promote political polarization.

"It's a known strategy to infiltrate an interest group around a particular issue or topic and then slowly try to introduce new things into that discourse," he explains.

After "getting access to a vulnerable subgroup and getting followers from that subgroup" on social media, Broniatowski says, the Russian trolls would get their followers to retweet messages about other issues that are in line with the Kremlin's agenda.

Autistic Lawyer

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

Lulu Ramadan at The Palm Beach Post:

 When Haley Moss was diagnosed with autism at 3 years old, doctors told her parents that she would be lucky to graduate high school and get a minimum-wage job.

Two decades later, Moss is a law school graduate, a practicing attorney, a published author and an inspiring voice for children on the autism spectrum.

Moss, 24, prepared a speech for a Boca Raton gala Saturday, where she’s being honored with an award from nonprofit Unicorn Children’s Foundation, about changing the conversation surrounding autism.

“It’s about dreams and following dreams and having no limits,” said Moss, a Miami-based attorney.

When I was diagnosed with autism at age 3, my parents were told I’d be lucky if I got a driver’s license or even made a friend.

21 years later, they saw me get sworn into The Florida Bar. #JourneyToEsquire complete ✅⚖️ https://t.co/bXlnAQkSAh

— Haley Moss (@haleymossart) January 14, 2019

PROVING THEM WRONG: At 3 years old, Haley Moss was diagnosed with autism and doctors thought she may never be able to work a minimum wage job. But last month, she became the first openly autistic person to be admitted to the Florida Bar! https://t.co/xpDR2FqzA8

— FOX 13 Tampa Bay (@FOX13News) February 16, 2019

Retweeting this again to address every question about being “openly autistic” as a person who has fewer support needs https://t.co/0KiZqDowcz

— Haley Moss (@haleymossart) February 17, 2019

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.

“