ABLE Age Adjustment Act 2019

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

A release from the US Senate Special Committee on Aging:

Today, U.S. Senators Bob Casey (D-PA), Ranking Member of the U.S. Senate Special Committee on Aging, Jerry Moran (R-KS), Chris Van Hollen (D-MD) and Pat Roberts (R-KS) introduced a bipartisan bill that would expand access to savings accounts that allow people with disabilities to save money. The Achieving a Better Life Experience (ABLE) Age Adjustment Act would increase program eligibility and allow people who have acquired a disability before age 46 to open ABLE accounts.

“People with disabilities are less likely to be employed, more likely to be underemployed and are twice as likely to live in poverty as compared to their working-age peers. With fewer opportunities to earn income and significant penalties that prevent saving, people with disabilities and their families are often in difficult financial situations,” said Senator Casey. “The ABLE Age Adjustment Act would help more than 1 million veterans with disabilities become eligible to open ABLE accounts and help all people who acquire disabilities between 26 and 46 years of age to achieve financial independence and economic stability.”

“The savings plans created through the Achieving a Better Life Experience Act have provided Americans with disabilities better options to plan for their future without burdensome barriers that often exist within federal entitlement programs,” said Senator Moran. “However, there is still more to be done. While this program has already seen great success, ABLE savings accounts are currently available only to those who acquire their disability prior to their 26th birthday, leaving out millions – including veterans – who would otherwise qualify. I am pleased to continue our bipartisan work by introducing the ABLE Age Adjustment Act, which will expand the age of eligibility and help sustain this program on a long-term basis.”

“Since the passage of the ABLE Act, families across the country have benefitted from the opportunity to better plan for the future of their disabled loved ones. This legislation will build on the foundation of the ABLE Act and expand access to these accounts to more families,” said Senator Van Hollen. “I'm proud to work with advocates from the disability community to make this important improvement to the ABLE Act and strengthen the ability of thousands of Maryland residents to live independent and meaningful lives.”

“Families with disabled individuals carry an uphill financial burden,” said Senator Roberts. “Our bill will help these families facing long-term concerns about the well-being of their disabled loved-ones by making tax-free savings accounts covering qualified expenses such as education, housing and transportation available to more individuals in need.”

Sen. Casey’s ABLE Act, which was supported by Sens. Moran, Van Hollen and Roberts, and was signed into law in 2014. The ABLE Act made it possible for states to pass legislation that allows people with disabilities, under age 26, to open tax-free savings accounts. The ABLE Act helps people with disabilities and their families save money that can be used to cover qualifying expenses, such as health care or education, without the risk of losing federal disability benefits such as Supplemental Security Income or Medicaid.

Last Congress, Sen. Casey held an Aging Committee hearing entitled, Supporting Economic Stability and Self-Sufficiency as Americans with Disabilities and their Families Age, during which he highlighted how the ABLE program has benefitted Pennsylvanians. According to the National Association of Treasurers, 34,707 ABLE accounts have been opened nationwide and more than $171 million has been invested in these accounts.

Measles Update

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.

CDC reports that there are already as many measles cases in 2019 as in all of 2016 and 2017 combined.

Tyler Pager at NYT

Public officials and health experts had given several warnings: Do not allow a student in school if they had not been vaccinated against measles.

Still, during New York City’s largest measles outbreak in a decade, a school in Brooklyn ignored that advice, resulting in one student infecting at least 21 other people with the virus.

The outbreak, at Yeshiva Kehilath Yakov in Williamsburg, is reigniting concerns that too many people in New York’s ultra-Orthodox Jewish communities are unvaccinated, as well as worries that measles would continue to spread after travelers arrived last fall from parts of Israel and Europe, where the virus was spreading.

City officials said they have struggled to increase vaccination rates in certain communities because of popularity of the widely debunked anti-vaccination movement, with parents declining vaccines for their children in fear that they increase the risk of autism.

Michael Gerson at WP:

Politics does make a huge difference to public health in one way. When politicians give legitimacy to dangerous and disproven scientific theories — as both Paul and President Trump have done on vaccinations — they are encouraging a lower level of coverage, which makes a higher level of compulsion necessary. So it is the vaccination skeptics who are making intrusive public health methods more likely. That just makes sense, when you just think about it for a second.

Court :Education Dept Illegally Delayed Equity in IDEA Regulations

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Denise Marshall at the Council of Parent Attorneys and Advocates (COPAA):

Today, the U.S. District Court for the District of Columbia found that the U.S. Department of Education (the Department) had engaged in an ‘illegal delay’ of the 2016 Equity in IDEA regulations. Those regulations, which were supposed to go into effect on July 1, 2018, implement the Individuals with Disabilities Education Act (IDEA) requirements relating to significant racial disproportionality. The federal court’s ruling requires those 2016 final regulations to immediately go into effect.

The decision comes as a result of a lawsuit filed against the Department by the Council of Parent Attorneys and Advocates (COPAA), who were represented by the National Center for Youth Law.

The suit, filed on July 12, 2018, alleged that the Department’s delay violated the Administrative Procedure Act (APA).

“Today is a victory for children, especially children of color and others who are at-risk for being inappropriately identified for special education,” said COPAA’s executive director, Denise Marshall.

“COPAA, with the support of parents whose children who have been harmed by unlawful suspensions, assignments to segregated and restrictive classrooms, and improper decisions of both under and over identification for special education, took legal steps to fight the Department. The court has sided with the children whom the Department had deemed unimportant through its actions to delay implementation of the Equity in IDEA regulations.”

“While identification of children for special education is deeply complex, the court has made clear that the Department’s position – that the regulations would have caused [state-determined] quotas for special education – is unfounded. Today’s decision assures States will be required to help their districts who have historically discriminated against children and provide those children with early intervening services rather than ordering their suspension and expulsion from school.”

Of particular note is the court’s decision that the Department violated the Administrative Procedures Act (APA) by writing, “First, [the Department[ failed to provide a reasoned explanation for delaying the 2016 Regulations. Second, [the Department] failed to consider the costs of delay, rendering the Delay Regulation arbitrary and capricious” as COPAA had alleged. Furthermore, COPAA’s ‘associational’ standing was upheld by court which means among other legalities that they have the credibility and legal right to protect the interest of children with disabilities in this matter.

“Students and families will benefit from this ruling because their states and school districts will have clear rules about significant racial disproportionality in special education," said the National Center for Youth Law’s Executive Director Jesse Hahnel.

Marshall concluded, “As an organization that for 21 years has held up its Mission to advocate for the civil rights of students with disabilities, we especially thank the families that stood with us in this fight to protect the rights and opportunities of children. The federal government must prioritize children and ensure they have access and equity to achieve their full potential in our schools.”

Read the Court’s decision in COPAA vs Elizabeth (Betsy) DeVos, Secretary of Education; Johnny Collett, Assistant Secretary for Special Education and Rehabilitative Services; U.S. Department of EducationOpens a New Window..

COPAA was also represented in the lawsuit by Sidley Austin LLP.

IDEA Full Funding 2019

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act

The National School Boards Association backs reauthorization and full funding of the Individuals with Disabilities Education Act (IDEA).

From an NSBA release:

IDEA (Public Law 94-142), passed by the United States Congress and signed by President Gerald Ford in 1975, has not been updated since 2004. The law needs to be modernized to ensure that the rights of children with disabilities are protected and to assist states and school districts so they can build upon their current efforts to provide students who need extra help the support and tools they need to receive an equitable educational opportunity.

Effectively serving students with disabilities and their families is a shared responsibility and school board members have been diligently working to do their part. Public schools have made numerous enhancements – employing new instructional approaches, intervening with students and their families earlier, retaining more special education specialists, providing a range of programs and services, and more – to help students with additional educational needs. The current law, however, fails to meet the needs of students and their families.

The federal government’s contribution to serve IDEA students covers approximately 16 percent of the funding, which is well below the promised level of 40 percent. The funding gap serves as an unfunded mandate by forcing state and local governments to make up the difference. This discrepancy also impacts the amount of funding that serves students without disabilities, which is an unintended consequence of the federal government’s failure to meet its obligation.

While the law needs to be reauthorized and funded fairly, state government officials and school board members have worked to make IDEA a successful investment in students with special needs. A 2018 U.S. Department of Education report documents that the percentage of students with disabilities graduating with a regular high school diploma increased by 10 percent between 2006 and 2016. This is a notable accomplishment among the more than six million students with disabilities (13.5 percent of all students) in public schools.

“Students, parents and public schools face challenges to implement effective strategies to help students with differing needs succeed in school as a result of the federal government’s broken promise to meet its obligation,” said NSBA Executive Director and CEO, Thomas J. Gentzel. “Congress will help ensure better outcomes for all students when it reauthorizes and fully funds IDEA.”

“It is imperative students with disabilities and their families are supported in their educational pursuits. Unfortunately, the federal government is not meeting its promise to these individuals as they strive to reach their goals,” said Representative John Katko (NY-24). “The federal government is leaving state and local governments to pick up too much of the tab when it comes to special education funding. In a time when students with special needs are graduating from high school at an increasing rate and experiencing educational achievement, the federal government should want to be a part of that success. I am pleased to once again advocate for full funding for the Individuals with Disabilities Education Act.”

Senate Hearing on Vaccines

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.

Yesterday, the Senate Committee on Health, Education, Labor, and Pensions held a hearing titled  "Vaccines Save Lives: What Is Driving Preventable Disease Outbreaks?"

Ethan Lindenberger, senior Norwalk High School, Norwalk, Ohio:

My mother is an anti-vaccine advocate that believes vaccines cause autism, brain
damage, and do not benefit the health and safety of society despite the fact such opinions have been debunked numerous times by the scientific community. I went my entire life without vaccinations against diseases such as measles, chicken pox, or even polio. However, in December of 2018, I began catching up on my missed immunizations despite my mother's disapproval, eventually leading to an international story centered around my decisions and public disagreement with my mother’s views
...
I remember speaking with my mother about vaccines, and at one point in our discussion she claimed a link exist between vaccines and autism. In response, I presented evidence from the CDC which claimed directly in large bold letters, “There is no link between vaccines and autism.” Within the same article from the CDC on their official website, extensive evidence and studies from the institute of medicine (IOM) were cited. Most would assume when confronted with such strong proof, there would be serious consideration that your views are incorrect. This was not the case for my mother, as her only response was, “that’s what they want you to think.” 

...
The Atlantic examined vaccine related posts on the social media platform Facebook from 2016-2019. In their article, they found that “Just seven anti-vax pages generated nearly 20 percent of the top 10,000 vaccination posts in this time period.” This echo-chamber that a handful of sources generate create the majority of anti-vaccine information on these platforms, and with my mother it continues to influence her views along with countless Americans.

My mother would turn to some of the cited sources in this article by The Atlantic, using their information as a basis for her views. This was problematic, as with a quick inspection of the claims and evidence of these sites their intentions are revealed. Information is not properly cited, and data is skewed to create false claims. In one video published by the website “stopmandatoryvaccines.com” (which was listed as one of the top contributors of anti-vaccine information by the Atlantic), the measles outbreak was made out to be a unfounded panic created by big pharmaceutical companies and meant to push legislative agendas. Del Bigtree, a celebrity in the anti-vaccine movement, spoke with “Dr. Bob Sears.” My mom and I sat down, watching this video so she could prove her beliefs were not unfounded.

 Jonathan A. McCullers,  MD, Chair, Department of Pediatrics, the University of Tennessee Health Science Center

Opposition to vaccines began in England in the early 19th century after introduction of Jenner’s cowpox vaccine for the dangerous disease smallpox. People objected on religious grounds and due to the irrational fear of becoming a cow. Opposition in the United States became common in the 1850s, resulting in lawsuits against states that mandated vaccination, culminating in a Supreme Court opinion in 1905 that found in favor of states’ right to enforce mandatory vaccination as a public health tool. Although the concept of vaccination opposition is not new, the rise in frequency and ease of rapid international travel has made it much more dangerous today than it was a century ago when vaccine refusers may have been isolated from others. The reasons for refusing vaccination have historically been very heterogenous. In 1998 the Wakefield Hoax  unified many vaccine refusers by providing a single platform for them using a false narrative – that childhood vaccines caused unsuspected, long term medical problems that had been missed by scientists. In response, a great deal of scientific work was done to prove that there is no link between vaccines and conditions such as autism. The Institute of Medicine has now declared that the evidence is thorough and convincing on this point. The antivaccination movement at this time, therefore, no longer has a platform or any credibility and has returned to a more heterogeneous group of objections.

 John Wiseman:, DrPH, MPH Secretary Of Health Washington State Department of Health:

As secretary of health for Washington state, my mission is to protect and promote the  lives of all the people in our state and when making public policy to ensure that it is based on the best science available to us. To that point, I want to speak directly to the parents who have children with autism and other serious health issues and who have been attending our hearings in Washington state and who are watching this hearing
today. I see you and your children. I see your pain, your desire for answers to your children’s health issues, your skepticism of government and the pharmaceutical industry, your mission to give your children the best life they can have and your desire to prevent other parents from the pain and suffering you and your children experience. Your  mission to protect and promote the health of your children is a mission I share. And I know on this point, some of you will strongly disagree with me: the science demonstrates that autism is not caused by vaccines.
...
Due to the success of vaccines, fewer people have witnessed the complications and  severity of vaccine preventable diseases. Unfortunately, this means that some parents may believe that vaccination is no longer necessary or that the minor or rarely severe  complications from vaccines are somehow worse than getting the disease, resulting in some parents not vaccinating their children. Discredited and fraudulent research has been used as a basis to claim a link between MMR and autism.24 Moreover, public health officials throughout the country are gravely concerned about the latest  misinformation originating from a well-organized and orchestrated anti-vaccination
movement.

Gottlieb to Step Down

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

 Laurie McGinley , Lenny Bernstein and Josh Dawsey report at WP:

Food and Drug Commissioner Scott Gottlieb, who used his post to tackle difficult public health issues from youth vaping to opioid addiction – surprising early skeptics worried about his drug industry ties – resigned Tuesday, effective in about a month.

Gottlieb, who has been commuting weekly to Washington from his home in Connecticut, said he wants to spend more time with his family. The 46-year-old physician, millionaire and cancer survivor known for a self-assured, sometimes brash, manner lives in Westport, with his wife and three daughters – 9-year-old twins and a 5-year-old.

Too bad.  He was strong on vaccines.  On February 14 Eileen Drage O'Reilly reported at Axios:

The federal government may try to take action if states don't tighten their vaccine exemption laws and measles continues to spread in sections of the U.S., FDA Commissioner Scott Gottlieb tells Axios.

Driving the news: Overall case numbers of measles remain low in the U.S. but the disease is growing in areas of high non-vaccination rates. Some states like Washington are considering tightening their exemptions even as they continue to face a more organized anti-vaccination movement.

"It's an avoidable tragedy," Gottlieb, who says he's usually a proponent of state rights, tells Axios. "Too many states have lax laws."

Antivax and Amazon

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.

Caitlin Owens at Axios Vitals:

Amazon is the latest tech company to crack down on content spreading false information about vaccines from its platform.

• Buzzfeed News reported on Friday that anti-vax documentaries were available on Amazon Prime Video on Friday morning, but appeared to have been removed by the afternoon.

• Around noon, Rep. Adam Schiff (D-Calif.) — chairman of the House Intelligence Committee — sent a letter to Amazon CEO Jeff Bezos expressing concern that the company was "surfacing and recommending products and content that discourage parents from vaccinating their children, a direct threat to public health."

The big picture: Amazon's actions follow similar ones taken by other tech companies like Google and Facebook, which have also taken steps to reduce the availability of anti-vaccine content on their platforms in response to increased public pressure.

• Recent measles outbreaks have been attributed, in part, to reduced vaccination levels in some areas.

• While tech companies have tried to avoid becoming content arbiters, "the issue is harder to duck when the spread of false information can lead to real-world harm," my colleagues Sara Fischer and Kia Kokalitcheva wrote last month.

Yet Another Study: NO LINK BETWEEN MMR VACCINE AND AUTISM

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

Anders Hviid and colleagues have at article at Annals of Internal Medicine titled "Measles, Mumps, Rubella Vaccination and Autism: A Nationwide Cohort Study."  The abstract:

Background:The hypothesized link between the measles, mumps, rubella (MMR) vaccine and autism continues to cause concern and challenge vaccine uptake.

Objective:To evaluate whether the MMR vaccine increases the risk for autism in children, subgroups of children, or time periods after vaccination.

Design:Nationwide cohort study.

Setting:Denmark.

Participants:657 461 children born in Denmark from 1999 through 31 December 2010, with follow-up from 1 year of age and through 31 August 2013.

Measurements: Danish population registries were used to link information on MMR vaccination, autism diagnoses, other childhood vaccines, sibling history of autism, and autism risk factors to children in the cohort. Survival analysis of the time to autism diagnosis with Cox proportional hazards regression was used to estimate hazard ratios of autism according to MMR vaccination status, with adjustment for age, birth year, sex, other childhood vaccines, sibling history of autism, and autism risk factors (based on a disease risk score).

Results:During 5 025 754 person-years of follow-up, 6517 children were diagnosed with autism (incidence rate, 129.7 per 100,000 person-years). Comparing MMR-vaccinated with MMR-unvaccinated children yielded a fully adjusted autism hazard ratio of 0.93 (95% CI, 0.85 to 1.02). Similarly, no increased risk for autism after MMR vaccination was consistently observed in subgroups of children defined according to sibling history of autism, autism risk factors (based on a disease risk score) or other childhood vaccinations, or during specified time periods after vaccination.

Limitation:No individual medical chart review was performed.

Conclusion: The study strongly supports that MMR vaccination does not increase the risk for autism, does not trigger autism in susceptible children, and is not associated with clustering of autism cases after vaccination. It adds to previous studies through significant additional statistical power and by addressing hypotheses of susceptible subgroups and clustering of cases.

Primary Funding Source: Novo Nordisk Foundation and Danish Ministry of Health.

Insurance Lobbyists Block Reform in South Carolina

The Politics of Autism includes an extensive discussion of insurance.

Emily Wright at The State (SC):

In South Carolina, Ryan’s Law requires that large group health insurance plans and the State Health Plan cover autism therapy, but with many restrictions. It was enacted 12 years ago, and we now know that those restrictions are inappropriate. The data proves the therapy’s efficacy, and the costs are reasonable when distributed across policyholders. This law is working — for those fortunate to be covered by it.

My daughter has an individual health insurance plan, but this therapy is excluded in that kind of plan.

Why? I pay premiums too. Why doesn’t she have access to the same coverage?
I am also a small business owner. I could purchase small group health insurance, but S.C.’s law also allows the therapy to be excluded in those plans.

Autism advocates are in their fifth year of attempting to expand Ryan’s Law to include the individual and small group markets. Bill S.135 passed the Senate in 2015 but was blocked in a House committee. Bill H.3790 passed the House in 2017 but was blocked in a Senate committee. Now bill S.363 has been filed by Sen. Tom Davis. All three bills have essentially the same language.

Why has the same language passed both the House and Senate but still not become law? The powerful, big money insurance industry stopped it.

An alternate proposal was introduced by the insurance industry last year. The entire autism community opposes the proposal, but it managed to be fast-tracked through the Senate Banking and Insurance Committee. Fortunately, autism advocates stopped the bill on the Senate floor. But the same bill has been pre-filed this session (S.74).

Extremism, Populism, and the Antivax Movement

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.

Kelly Weill at The Daily Beast:

Most anti-vaxxers are not white supremacists, far from it. But the overlap can send some well-meaning parents down the rabbit hole. Far-right groups frequently engage in “entryism,” a tactic that involves seeding a sympathetic mainstream group with extremist ideology, then slowly radicalizing its members. The tactic works well in groups like the anti-vax community.
...
[P]opulist movements, including Donald Trump’s presidential campaign, borrow some of the left’s anti-authority language, casting themselves as anti-elite. On Facebook, anti-vaxxers might rage against the authority of pharmaceutical companies or school vaccination policies, but Trump is a less common target. (Trump has promoted anti-vax conspiracies, too, falsely claiming in 2014 that vaccines cause autism.)

Other conservatives have painted their anti-vax stances as anti-authoritarian by claiming vaccinations are communist. “The idea that we force someone to give up their liberty for the sake of the collective is not based on American values but rather, Communist,” Kelly Townsend, a Republican anti-vaxxer in Arizona’s state House, wrote in a Thursday Facebook post.

In The European Journal of Public Health, Jonathan Kennedy has an article titled "Populist Politics and Vaccine Hesitancy in Western Europe: an Analysis of National-level Data.  The abstract:

Background
Parents’ reluctance to vaccinate their children undermines the effectiveness of vaccination programmes in Western Europe. There is anecdotal evidence suggesting a connection between the rise of political populism and vaccine hesitancy.

Methods
This paper analyses national-level data to examine the link between political populism and vaccine hesitancy in Western Europe. Political populism is operationalised as the percentage of people in a country who voted for populist parties in the 2014 European Parliament elections. Vaccine hesitancy is operationalised as the percentage of people in a country who believe that vaccines are not important, safe and effective according to data from the Vaccine Confidence Project (2015).

Results
There is a highly significant positive association between the percentage of people in a country who voted for populist parties and who believe that vaccines are not important (R = 0.7923, P = 0.007) and effective (R = 0.7222, P = 0.0035). The percentage of people who think vaccines are unsafe just misses being significant at the 5% level (R = 0.5027, P = 0.0669).

Conclusions
Vaccine hesitancy and political populism are driven by similar dynamics: a profound distrust in elites and experts. It is necessary for public health scholars and actors to work to build trust with parents that are reluctant to vaccinate their children, but there are limits to this strategy. The more general popular distrust of elites and experts which informs vaccine hesitancy will be difficult to resolve unless its underlying causes—the political disenfranchisement and economic marginalisation of large parts of the Western European population—are also addressed.

From the article:

Until the mid-20th century, science was seen as the ultimate form of knowledge, but in recent decades social scientists have challenged natural scientists’ claims to epistemological supremacy. This is based on a valid critique of the scientific method and its inability to uncover objective truth. Nevertheless, it helped to create a situation in which many laypeople distrust scientific expertise. Harry Collins refers to this phenomenon as technological or scientific populism. Climate change denial is on manifestation, vaccine hesitancy is another

[It] seems likely that scientific populism is driven by similar feelings to political populism—i.e. profound distrust of elites and experts by disenfranchised and marginalised parts of the population.

A 2018 California Measles Outbreak

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

Erin Allday at The San Francisco Chronicle:

A small measles outbreak in the Bay Area last year spread almost entirely among families who had chosen not to vaccinate their children — including two young boys whose mother lied to public health investigators about their immunization status — underscoring the gaps that remain in vaccination coverage in California, according to a report published Friday.

Only seven people were infected in the outbreak that started in Santa Clara County. One likely reason it was so contained is that vaccination rates statewide have been high ever since a 2016 law ended most options for families to opt out of immunizing children, public health authorities said.

But the cases also demonstrate that with a disease as highly infectious as measles, even small clusters of unvaccinated people can put communities at risk. And it’s alarming, infectious disease experts said, that some parents are so attached to anti-vaccination beliefs that they would undermine a public health investigation.

Also note that some antivax California parents have been getting questionable medical exemptions for their children. 

California Legislation on Reporting Abuse

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.

Children w/ #autism are at higher risk of abuse than their peers. My bill, #AB189, requiring autism service providers to report suspected child abuse passed out of the Committee on Public Safety unopposed and is moving on in the CA Legislaturehttps://t.co/QhusO1Jsok

— Sydney Kamlager-Dove (@AsmKamlagerDove) February 27, 2019

Bill Digest:

AB 189, as introduced, Kamlager-Dove. Child abuse or neglect: mandated reporters: autism service personnel. Existing law, the Child Abuse and Neglect Reporting Act, requires a mandated reporter, as defined, to report whenever he or she, in his or her professional capacity or within the scope of his or her employment, has knowledge of or observed a child whom the mandated reporter knows or reasonably suspects has been the victim of child abuse or neglect. Failure by a mandated reporter to report an incident of known or reasonably suspected child abuse or neglect is a misdemeanor punishable by up to 6 months of confinement in a county jail, by a fine of $1,000, or by both that imprisonment and fine. This bill would add qualified autism service providers, qualified autism service professionals, and qualified autism service paraprofessionals, as defined, to the list of individuals who are mandated reporters. By imposing the reporting requirements on a new class of persons, for whom failure to report specified conduct is a crime, this bill would impose a state-mandated local program. The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement. This bill would provide that no reimbursement is required by this act for a specified reason.

The LA Sentinel reports:

 Licensed providers (Psychologists, Occupational Therapists, Physical Therapists, Board of Behavioral Sciences licensees etc.) already are mandated reporters. However, Board Certified Behavior Analysts, Analysts, Behavior Analysts and Behavior Management Assistants are not licensed in CA and thus don’t have a reporting requirement.

Airing Research on Evidence-Based Practices

In The Politics of Autism, I describe the difficulties of finding reliable information:

One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.

Another challenge consists of translating research into practice.

At The Journal of Autism an Developmental Disorders, Ann M. Sam, Ann W. Cox, Melissa N. Savage, Victoria Waters, and Samuel L. Odom have an article titled "Disseminating Information on Evidence-Based Practices for Children and Youth with Autism Spectrum Disorder: AFIRM"

There is now great demand for knowledge about intervention practices that work. This demand is pushed by the increased prevalence of autism spectrum disorder (ASD; Baio et al. 2018), recognition that ASD is a condition that has substantial life-long implications (Howlin and Magiati 2017), and evidence that children, youth, and adults with ASD benefit from intervention and instruction programs (Wong et al. 2015). Yet, just knowing which practices are effective and are supported by research is not enough to lead to increased use of such practices. Implementation and diffusion sciences both emphasize the need to translate such scientifically-based information into practical information that service providers can use in their work with children and youth with ASD and their families (Dingfelder and Mandell 2011; Fixsen et al. 2013). The purpose of this paper is to describe one approach that translated information about evidence-based practices into practical information for use in programs for children and youth with ASD, report the utilization of such a dissemination effort by consumers, and examine the evaluation of such information by consumers

The abstract: 

Comprehensive reviews of the research literature have identified that focused  ntervention practices for children and youth with autism spectrum disorder have evidence of producing positive developmental and learning outcomes. The Autism
Focused Intervention Resources and Modules (AFIRM) project has translated evidence-based practices identified by Wong et al. (Journal of Autism and Developmental Disorders 45(7):1951–1966, 2015) into online learning modules. The purpose of this paper is to describe (1) the process for translating the research literature into practical information that practitioners can use, (2) its dissemination through a freely accessible website, (3) the use of the modules by over 64,500 users located in the United States and abroad, (4) knowledge gained as a result of completin the modules, and (5) consumers’ evaluations of modules usefulness and relevance.

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