Ohio Mandate Bill

An insurance mandate bill is on Ohio Governor John Kasich's desk.  (If you look up Ohio House Bill 463 and see that it seems to be about foreclosures, you have not made a mistake.  The Legislature added autism provisions)

From Ohio State Representative Cheryl Grossman:

State Representative Cheryl Grossman (R-Grove City) applauded the recent passage of House Bill 463, legislation that includes provisions that require private insurers to provide coverage for autism spectrum disorder. House Bill 463 also expedites the foreclosure process for vacant and abandoned homes, working to reduce the amount of blighted properties throughout the state.

The section of the bill regarding autism coverage originated from House Bill 350, which Rep. Grossman sponsored. The language was amended into House Bill 463 during the legislation process. Under the provisions, any health insurance plan is required to provide coverage for the screening, diagnosis, and treatment of autism for individuals up to the age of 14. Coverage cannot be terminated as a result of such a diagnosis.

“Thousands of Ohio families will benefit from autism insurance coverage now being provided for children in the autism spectrum,” said Rep. Grossman. “I am grateful for the strong support that was received in the Ohio House of Representatives and the Ohio Senate for this important legislation, as well as the countless individuals who have advocated for the past eight years to make this a reality. This was a very special Christmas present for so many children and their families.”

Rep. Grossman was also recently named as the 2016 Autism Speaks National Legislator of the Year for her tireless advocacy work in the Ohio House and within her community.

House Bill 463 will now be under consideration by Governor Kasich.

(Because of term limits, Rep. Grossman will not be in office next year.)

Nathan Baca reports at WBNS-10TV:

"It gives families access to therapies that can really, really help their children. We've seen such an improvement in Michael - from ABA," said Doug Beebe, father of 5-year-old Michael. "Not everyone has the same resources. I think a lot of kids have been going without."

"The term that I heard was - 'you're excluded.' And that's tough to hear," Doreena Beebe recalled.

Autism insurance coverage took years or parental activism and two different legislative bills. The successful bill was spearheaded by Representative Cheryl Grossman of Grove City.
...
"What I would really encourage families now, is get your child tested. Because now there are resources," said Marcy Ingram. Her son is on the autism spectrum.

Restraining Seclusion and Restaint in Michigan

In The Politics of Autism, I discuss the use of restraint and seclusion.

A release from the Office of the Governor of Michigan:

The use of non-emergency restraint and seclusion practices will no longer be allowed in Michigan schools under legislation signed today by Lt. Gov. Brian Calley.

“By putting an end to non-emergency restraint and seclusion in our schools, we are showing kids that their safety and their academics matter to us,” Calley said. “This legislation is a great safeguard for our kids that will help them grow and thrive instead of the archaic and barbaric practices of the past that made school an unsafe place for children.”

Calley signed the bills at an inclusion rally in Troy where he was joined by nearly 300 special education advocates.

House Bills 5409-5417 resulted from recommendations of Gov. Rick Snyder’s Special Education Reform Task Force that was chaired by Calley. The nine-bill bipartisan package was sponsored by state Reps. Frank Liberati, Christine Greig, Amanda Price, Hank Vaupel, Jim Tedder and Kurt Heise.

Under the legislation, restraint and seclusion practices may only be used if a child is a danger to themselves or others. The bills also require any use of restraint and seclusion to be reported both to the parents and the Michigan Department of Education, as well as requiring additional training for school personnel on how to handle behavioral situations.

The legislation codifies the current State Board of Education policy regarding appropriate usage of restraint and seclusion practices into law.

The bills are now Public Acts 394-402 of 2016.

Article V Section 26 of the Michigan Constitution gives authority to the lieutenant governor to sign legislation when the governor is out of state.

For more information on this and other legislation, visit www.legislature.mi.gov.

Trump, Autism, and Vaccines

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.  Trump has supported that theory.

At YouGov, Kathy Frankovic reports on a new survey showing that 31 percent of Trump voters -- compared with 18 percent of Clinton voters -- agree that "Vaccines have been shown to cause autism."  There is little difference, however, by party identification:  28 percent of Democrats, 29 percent of Republicans and 34 percent of independents agree with the debunked notion.

At Mother Jones, Jeremy Schulman recounts "the worst anti-science BS of 2016:

Trump has long been a proponent of the discredited—and dangerous—theory that vaccines cause autism. "I'm not against vaccinations for your children, I'm against them in 1 massive dose," Trump tweeted in 2014. "Spread them out over a period of time & autism will drop!" He made the same argument at a 2015 GOP debate, causing a spike in Google searches for information about the supposed vaccine-autism connection. Since then, Trump hasn't said much more about the issue in public. But according to Science magazine, he met privately with a group of leading anti-vaccine activists at a fundraiser in August. The group reportedly included Andrew Wakefield, the lead researcher behind the seminal study (since retracted) of the vaccine-autism connection. Science reported that "Trump chatted with a group of donors that included four antivaccine activists for 45 minutes, according to accounts of the meeting, and promised to watch Vaxxed, an antivaccine documentary produced by Wakefield…Trump also expressed an interest in holding future meetings with the activists, according to participants."

Progress in Employment of ASD People

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

Bryant Frazer reports at Studio Daily:

Founded in 2011, Exceptional Minds is a vocational school with a difference. Based in Sherman Oaks, CA, the digital arts school and studio educates autistic adults for careers in media and entertainment. That goal may be lofty, but it is hardly theoretical — in spring 2016, Exceptional Minds graduated its first class of students, some of whom are already working at Hollywood facilities. Others have joined Exceptional Minds' own digital studio, which has completed jobs on projects including Dawn of the Planet of the Apes and Avengers: Age of Ultron.

It's a big step for people that are in many cases marginalized. "We have a guy who was working at Albertson's [grocery]," says Exceptional Minds Executive Director Ernie Merlan. "They told him he'd never make it past Albertson's. He came to us for three years, and now he's working at Stargate Studios."

Bourree Lam reports at The Atlantic:

Interest in what’s called neurodiversity is growing at American companies. This year, the accounting firm EY (formerly known as Ernst & Young) has been piloting a program to employ people with autism in order to explore the benefits of having workers of different cognitive abilities, such as greater productivity and building a more talented workforce.
...
[Prof. Rob] Austin explained that the push for neurodiversity in the workplace has Danish origins. Thorkil Sonne, a Danish telecom worker, was the instigator for bringing people with autism into the professional space. Sonne’s own son has autism and he founded the company Specialisterne in 2004 with the specific aim of employing people with autism and preparing them for the workforce. Employees at Specialisterne were high-functioning autistic people who were offered jobs in the IT and technology space.

“At some point, Thorkil wasn't making enough impact. He had 75 or so people employed, but he wanted to employ a million people with autism. So he changed his model, and started trying to convince big companies to do it,” says Austin. One of these companies was SAP, a huge software company, which hired people with autism to do software testing and analytics. The company now employs over 100 people on the autism spectrum, and that program served as a case study by Austin and his colleague Gary Pisano of Harvard Business School.

Two other companies that have been taking the lead on this are HP Enterprises (via an initiative called the Dandelion program in Australia) and Microsoft. In the SAP case study, the company found employees who had advanced degrees and patents in their names, but still weren’t able to land corporate jobs. Austin says that the talent is there, but often missed because of the over-reliance on the interview process or the lack of flexibility on the part of companies. And now, the interest in these workers, which began in the tech industry, seems to be spreading to other industries and job functions as well.

Benjamin Raven reports at MLive:

After a successful pilot period, Ford Motor Co. has expanded a hands-on program to give people with autism the chance to gain work experience with the Dearborn automaker.

The FordInclusiveWorks Autism Program looks to match participants with skills and that fit their capabilities and evaluates them for potential future employment opportunities.

The program is funded by the Autism Alliance of Michigan.

Pennsylvania Does Special Ed Better Than Texas

In The Politics of Autism, I discuss special education.  Some states do a reasonably good job, but Texas is not one of them.

At The Houston Chronicle, Susan Carroll and Brian M. Rosenthal report on a girl with Asperger's who made great progress after her dad moved from Texas to Pennsylvania. (h/t FRL)

Pennsylvania does not have a special education enrollment target — no state does, other than Texas — but it does fund special ed in an unusual way.

The state assumes that roughly 16 percent of students need special ed and funds all school districts at that rate, regardless of how many special ed kids they actually have.

The state's rationale for choosing that number was simple — it was the state average at the time, according to Casey Smith, an education department spokesman. But before implementing the system, officials also called in experts and hosted public forums across the state, Smith said.

That approach is far different than what took place in Texas, when a small group of officials set a benchmark well below the state average without consulting the public, the federal government or any researchers.

The Pennsylvania system is good because it does not incentivize either under-identification or over-identification, several experts said.

Pennsylvania law also is praised for requiring schools to respond to verbal requests from parents for special education evaluations, instead of only written requests.

As a result, about 17 percent of students receive special education,  a 1.5 percentage point increase from 2004, according to the latest federal data.

Autistic Mothers in the UK

In The Politics of Autism, I discuss challenges facing autistic adults.

At The Guardian, Amelia Hill writes of a "hidden pool" of autistic mothers in the UK.

“There are far more undiagnosed mothers out there than we have ever thought,” said Dr Judith Gould, lead consultant and former director of the Lorna Wing Centre for Autism who developed the first and only female-specific diagnostic tests, and who trains doctors in how to recognise late adult female diagnosis.

“These women are coming to prominence now because there’s more information on autism in girls and women on the internet, so they can research their children and in doing so, diagnose themselves,” said Gould.

Professor Simon Baron-Cohen, founder of the Autism Research Centre at Cambridge University and the Class clinic, dedicated to diagnosing adults with autism, agreed: “[Undiagnosed mothers are] definitely a growing phenomenon. Putting a number on it is impossible but I’m sure it’s a big number because women seeking diagnoses of autism were likely to be dismissed until just a few years ago, because autism in females was thought to be very rare.”

Problems with the House Version of Kevin and Avonte's Law

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress.

The House passed an amended version of Kevin and Avonte's Law, but the Senate did not act on this version before adjourning for the year.  

Ari Ne'eman writes at Vox:

A version of Kevin and Avonte’s Law passed the Senate in July, incorporating carefully crafted language developed by the bill’s primary sponsor, Senator Chuck Schumer (D-NY), designed to address or at least mitigate concerns from self-advocates. The Senate language restricted the acceptable scope of tracking device use to cases that would reduce the risk of injury or death to the person tracked. It also provided funding for safety issues other than tracking devices, like training first responders and educators on the needs of people with disabilities, and training law enforcement to help them spot signs of abuse.

Unfortunately, when the House passed the legislation on December 8, several modifications were made, including allowing the use of tracking devices for purposes other than locating missing persons — tracking people to prevent them from harming others, for instance. The House also wanted to pay for the program by defunding an important community-policing grants program not directly related to disability. This caused my organization, the Autistic Self Advocacy Network, previously neutral on the legislation, to switch to active opposition — and also inspired several other major disability groups to pull their support.

Competing call-in campaigns to the Senate ensued through late last Friday, with proponents calling for a floor vote before the Senate adjourned for the session and critics urged Senator Schumer to reject the House changes. In the end, no vote on the bill took place, so proponents must start the process again in the new Congress.

Transition Is Tough

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.

A new study analyzes the stress of transition.  From a University of Missouri press release:

“The challenges of living independently, gaining employment, attaining postsecondary education and building social relationships are greater for adolescents and young adults with autism,” said Nancy Cheak-Zamora, assistant professor of health sciences in the MU School of Health Professions. “It is vital that professionals are prepared to assist with the transition, and that they have insight into adolescent and caregiver experiences during the difficult time of transitioning to adulthood.”

Cheak-Zamora, Jennifer First, a doctoral candidate in the MU School of Social Work, and Michelle Teti, associate professor of health sciences, analyzed the reported experiences of adolescents with autism and their caregivers. They identified main themes of stress impacting families: challenges in accessing services, difficulties with adapting to transition changes, and managing multiple responsibilities and higher education challenges.

One of the study participants, a caregiver named Mary, related how the autism center in her community offered no support once children with autism leave. She said that she wishes that services would increase during this period; once children reach a certain age, it is difficult to find help. Caregivers and adolescents also reported a variety of strategies to cope with the stress of transitioning to adulthood with autism. Main themes included: accessing community support; receiving support from friends, family and teachers; and creating opportunities for self-determination, such as making independent choices and setting goals.

“For families who are experiencing a lack of available services for their adolescent with ASD, social workers can collaborate in forming family groups that advocate for more services for individuals living with autism into adulthood,” First said. “Social workers should assist families with the coordination of essential services such as medical treatment, mental health supports, independent living, respite care, college support and enhanced vocational support.”

“A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder,” was published in the Journal of Family Social Work. Funding for the project was obtained from the Health Resources and Services Administration, Maternal and Child Health Bureau (H6MMC11059).

Price

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.

Trump is nominating Rep. Tom Price (D-GA) to head the Department of Health and Human Services.

Price belongs to the crackpot antivax group, the Association of American Physicians and Surgeons. At Respectful Insolence, Orac writes:

[It] is worth briefly mentioning the pure antiscience and pseudoscience that emanates from the AAPS, particularly through its house organ, the Journal of American Physicians and Scientists (JPANDS). This journal is a veritable cornucopia of ideology-motivated quackery and pseudoscience, including antivaccine pseudoscience up to and including the despicable claim that shaken baby syndrome is a “misdiagnosis for mercury poisoning” and that sudden infant death syndrome might be caused by vaccines, the bogus claim that abortion causes breast cancer, and anthropogenic global climate change denialism (don’t ask what that’s doing there). Indeed, Dr. Jane Orient, the executive director of AAPS, denies the very concept of a scientific consensus.

James V. Grimaldi and Michelle Hackman report at The Wall Street Journal:

President-elect Donald Trump’s pick to run the Health and Human Services Department traded more than $300,000 in shares of health-related companies over the past four years while sponsoring and advocating legislation that potentially could affect those companies’ stocks.

 Rep. Tom Price, a Georgia Republican, bought and sold stock in about 40 health-care, pharmaceutical and biomedical companies since 2012, including a dozen in the current congressional session, according to a Wall Street Journal review of hundreds of pages of stock trades he filed with Congress.

In the same two-year period, he has sponsored nine and co-sponsored 35 health-related bills in the House.

Maternal Flu: No Association with Autism

In The Politics of Autism, I discuss various ideas about what causes the condition.

At JAMA Pediatrics, Ousseny Zerbo have an article titled "Association Between Influenza Infection and Vaccination During Pregnancy and Risk of Autism Spectrum Disorder."

Question Is there an association between maternal influenza infection and vaccination and autism risk?

Findings In a cohort study of 196 929 children, of whom 3103 had austism spectrum disorder, maternal influenza infection during pregnancy was not associated with increased autism risk. There was a suggestion of increased risk of autism spectrum disorders among children whose mothers received an influenza vaccination during their first trimester, but the association was statistically insignificant after adjusting for multiple comparisons, indicating that the finding could be due to chance.

Meaning Our findings do not call for vaccine policy or practice changes but do suggest the need for additional studies.

Lack of Data: The Case of Germany

Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:

If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.

When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.

Specifically, we lack data both on trends in the United States and prevalence in other countries. Christian J Bachmann, Bettina Gerste, and Falk Hoffmann have an article in Autism titled "Diagnoses of autism spectrum disorders in Germany: Time trends in administrative prevalence and diagnostic stability." Note the first line of the following abstract:

For Germany, no data on trends in autism spectrum disorder diagnoses are available. The primary aim of this study was to establish the time trends in the administrative prevalence of autism spectrum disorder diagnoses. The second aim was to assess the stability of autism spectrum disorder diagnoses over time. We analysed administrative outpatient data (2006–2012) from a nationwide health insurance fund and calculated the prevalence of autism spectrum disorder diagnoses for each year, stratified by age and sex. Additionally, we studied a cohort with a first-time diagnosis of autism spectrum disorder in 2007 through 2012, investigating the percentage of retained autism spectrum disorder diagnoses. From 2006 to 2012, the prevalence of autism spectrum disorder diagnoses in 0- to 24-year-olds increased from 0.22% to 0.38%. In insurees with a first-time autism spectrum disorder diagnosis in 2007, this diagnosis was carried on in all years through 2012 in 33.0% (The International Classification of Diseases, Tenth Revision diagnoses: F84.0/F84.1/F84.5) and 11.2% (F84.8/F84.9), respectively. In Germany, like in other countries, there has been an increase in the administrative prevalence of autism spectrum disorder diagnoses. Yet, prevalences are still lower than in some other Western countries. The marked percentage of autism spectrum disorder diagnoses which were not retained could indicate a significant portion of autism spectrum disorder misdiagnoses, which might contribute to rising autism spectrum disorder prevalences.

Special Needs Trust Fairness Act

In The Politics of Autism, I discuss special needs trusts.

A release from Tucker Arensberg:

On December 14, 2016, President Obama signed the Special Needs Trust Fairness Act into law amended federal law to enable disabled individuals to establish their own first-party payback Special Needs Trusts under 42 U.S.C. § 1396p(d)(4)(A).

Prior to the passage of the Special Needs Fairness Act, federal law required disabled adults who were capable of handling their own affairs (and thus without legal guardians) to rely upon their parents, their grandparents or the courts to establish a first-party funded non-pooled payback Special Needs Trusts for their benefit.

This requirement was at odds with the fact such Trusts were effectively being funded by such disabled individuals with assets legally belonging to them (i.e. not third-party funds). This requirement was also inconsistent with the law governing the creation of Pooled Special Needs Trust under 1396p(d)(4)(C), which has always allowed disabled individuals to create their own first-party funded Pooled Special Needs Trust with non-profits. It is believed that this inconsistency was due a drafting oversight in the law since its enactment over 20 years ago.

A first-party funded Special Needs Trust is an invaluable planning tool that enables disabled individuals who receive assets outright, including through a gift, inheritance, personal injury settlement or child support, etc. to protect such assets for their future use while remaining eligible for essential means-tested government benefits like Supplemental Security Income and Medicaid (also known as Medical Assistance).

The Special Needs Fairness Act has removed a major obstacle and inequitable hurdle for the establishment of Special Needs Trust by competent, disabled adults and will greatly simply their planning. Such individuals previously needed to seek court involvement and incur unnecessary delays and legal and court costs to establish first-party funded Special Needs Trusts. With the passage of this Act, such individuals are now able to set up their first-party funded Special Needs Trusts special needs trust without having to petition the court sand incur unnecessary legal costs, loss of privacy.

The Special Needs Fairness Act will amend Section 1396p(d)(4)(A) of the Social Security Act to exclude first-party funded Special Needs Trust as a transfer for less than fair consideration and countable asset as follows:

“A trust containing the assets of an individual under age 65 who is disabled (as defined in section 1382c(a)(3) of this title) and which is established for the benefit of such individual by the individual, a parent, grandparent, legal guardian of the individual, or a court if the State will receive all amounts remaining in the trust upon the death of such individual up to an amount equal to the total medical assistance paid on behalf of the individual under a State plan under this subchapter.”

This amendment will apply to trusts established on or after the date of the enactment of the Special Needs Fairness Act, and thus while greatly beneficial to the prospective establishment of such Special Needs Trust won’t necessarily remove obstacles faced by individuals who had previously established Trusts in contravention of then-existing laws.

This change is also similar to the recently enacted Achieving Better Life Experience (ABLE) Act and the ABLE accounts it allows certain disabled individuals to creatd. While ABLE accounts are another useful planning tool they do have many restrictions that inapplicable to Special Needs Trusts. Use this link to view prior blog posts.

More on Special Education in Texas

In The Politics of Autism, I discuss special education.  Some states do a reasonably good job, but Texas is not one of them.

At The San Antonio Current, Alex Zielinski writes of US Department of Education listening sessions on problems with special education in Texas.

Autistic children locked in padded, sound-proof cells. Dyslexic kids given a computer program instead of a reading tutor. Children with severe speech impediments called "cute" by school officials, and then denied therapy. Suicide attempts in a 4th grade classroom called "disruptive."

These are just a handful of the hundreds of stories parents and youth advocates shared .with U.S. Department of Education staffers ...

"I want... school districts to fight over the child with special needs," said Kevin O'Bryan, a father of a child with down's syndrome, who spoke at the Austin session. He's struggled to get his daughter the education she needs through TEA. "Let's put money out there to follow the child, instead of the child following the money."

Some speakers travelled over 300 miles to testify, sharing what seemed to be normalized stories of kids with well-documented developmental issues being turned away from special education programs again and again. Those who couldn't attend shared more than 250 lengthy stories on a website created by the Department of Education.

One mother wrote that after being told repeatedly that her daughter would "mature out" of her developmental learning issues and turned away from the special education programs, she eventually pulled her daughter out in 3rd grade to be homeschooled. Shortly after, she got a doctor's confirmation that her daughter was autistic. But it was too late, she wrote in a post.

"Because of her late diagnosis, she has missed out on crucial therapy and interventions that could have significantly positively impacted her life and her future."

From one of many blog comments:

Both of my adult children with autism have above average IQ’s and were placed in self-contained classrooms throughout their time in Texas. They came from inclusion settings in Maryland in elementary school and were immediately placed in self-contained when we moved to Texas, and I had to fight for three years to get them to TRY inclusion for one or more subjects. Self contained was the way they wanted to do things. Later on, moving on to Middle School, I had to bring a sample of what work they were doing when my kids were in middle school to an ARD. I was also working in kindergarten at the same time. Kindergarten and the middle school self contained class were using the SAME worksheets for science. My kids with the normal IQs were doing kindergarten work. It was ‘appropriate.’ I think not.

It's Tough to be an Autism Parent in Texas

In The Politics of Autism, I discuss special education and  state Medicaid services for people with intellectual and developmental disabilities.  Some states do a reasonably good job, but Texas is not one of them.

At Raw Story, David Edwards reports that Texas will cut Medicaid for disabled kids.

KXAS reported on Sunday that the $350 million in cuts to Medicaid program passed by the GOP-controlled legislature had taken effect.

Texas Health and Human Services Commission spokesperson Carrie Williams told the station that the cuts had been implemented to “achieve savings.”

But a letter from the U.S. Department of Education earlier this month warned that 12 of the 47 providers participating in the Early Childhood Intervention program could discontinue offering services.

“If these groups do pull out of the program, it will be devastating for kids with autism, speech delays, Down syndrome, and other disabilities and delays,” Texans Care for Children CEO Stephanie Rubin told the Herald Democrat in an email. “We know that these groups want to keep serving children and we know staff at [the Texas Health and Human Services Commission] is working hard on this, but the Legislature needs to make sure the funding is in place.”

Alex Zielinski reports at The San Antonio Current:

Texas Medicaid is refusing to fully fund the most commonly used treatment for children with autism, according to a lawsuit filed in a San Antonio federal district court Tuesday.

Texas Rio Grande Legal Aid and Disability Rights Texas filed the suit on behalf of three Texas boys — all with autism spectrum disorder and all denied Medicaid coverage for needed Applied Behavioral Analysis (ABA) treatment. This treatment help kids with autism communicate, develop relationships, and reduce behavioral problems before they reach adulthood.

While Texas Medicaid does cover 30 hours of the treatment per month, for up to six months, autism specialists say patients need at least 20 hours of treatment a week for several years for it to really work.

Julie Chang report at The Austin American-Statesman:

Frustrated parents criticized the Texas Education Agency and several school districts Thursday night, accusing them of intimidation, lying and racking up high attorney fees to get out of providing special education services to their children.

More than 100 people signed up to address state and federal officials during an hours-long and often heated listening session coordinated by the U.S. Education Department in East Austin. It was the fifth and final forum in a series of sessions held across the state this week.

Federal officials launched the effort after the Houston Chronicle reported in September that the TEA had mandated that districts keep special education enrollment at or below 8.5 percent, which led school districts to deny children special education services. The newspaper found that the policy saved the state billions of dollars.

TEA officials have denied requiring districts to limit special education enrollment, but said that if more than 15.1 percent of school district’s student population are special education students, the state requires an improvement plan.

The agency will no longer use the performance indicators to intervene in school districts

Tillis and Gillibrand Restore TRICARE Reimbursement Rates

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.

A December 13 release from Senator Thom Tillis:

U.S. Senators Thom Tillis (R-NC) and Kirsten Gillibrand (D-NY), members of the Senate Armed Services Committee, announced that the Senate has passed their provision that would address issues with reimbursement rates for the TRICARE Autism Care Demonstration program. The Department of Defense is currently implementing a demonstration project that is scheduled to expire in December, 2018 that provides access to Applied Behavioral Analysis therapy to all military dependents with Autism Spectrum Disorder (ASD). Gillibrand and Tillis’s efforts would reset reimbursement rates for providers to no less than the levels that were in effect on March 31, 2016 to ensure access to care for all military dependents with ASD. The provision passed the Senate as part of the Fiscal Year 2017 National Defense Authorization Act (NDAA) and now heads to the President for his signature.

"During the past year, Senator Gillibrand and I have been working across the aisle to help restore reimbursement rates for ABA providers, and I'm pleased our provision was included in the NDAA," said Senator Tillis. "I now look forward to working with appropriators in the House and Senate to ensure that we provide for our military families.”

“I am so pleased that we were able to come together and roll back these rates to ensure that providers continue to participate in the Autism Care Demonstration program and that our military families have access to the critical services, care and support they need and deserve,” said Senator Gillibrand.

In March, Tillis and Gillibrand urged the Defense Secretary in a bipartisan letter to delay the new rates until after completion of the Demonstration program to protect ABA therapy access for over 26,000 children of military personnel and retirees. The following month, the Defense Health Agency (DHA) moved forward with adjusting TRICARE reimbursement rates for ABA therapy to beneficiaries diagnosed with ASD. Although metropolitan areas saw an increase in reimbursement rates, military bases mostly located in suburban or rural areas saw drastic cuts and substantial decreases in reimbursement rates.

The Demonstration program was designed to combine three different TRICARE programs that covered ABA services for beneficiaries into a single program with one uniform benefit. The demonstration program would also expand access to these services among the 26,000 TRICARE beneficiaries with ASD.

Antivax Moms in a California Race

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.  

Democrats got a supermajority in the California State Assembly by defeating incumbent Republican Young Kim, the only Republican in the chamber who supported SB 277 on mandatory vaccination. John Seiler writes at Fox and Hounds:

On Nov. 8, Kim got 46.8% of the vote, losing to Sharon Quirk-Silva, who got 53.2%. That was about the opposite of the vote two years ago, when Kim won with 54.6% to Quirk-Silva’s 45.4%, and became a rising star in the party.

“I’d like to think we helped to defeat Kim,” Stefanie Fetzer told me; she’s one of the leaders of the Moms against the mandatory vaccines. “We did a few things to educate voters on her stand against parental rights.” She said about 50 Moms were active in the anti-Kim effort, with 7,000 Moms active statewide in the general effort against SB277.

Regional Center Disparities

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

At California Health Report, Chris Richard reports on racially and ethnically-linked disparities in spending on services to the developmentally disabled at the state’s 21 regional centers:

In May, UC Davis researchers reported that the Centers distributed some $2,000 more during the study period to each white child with an autism spectrum diagnosis than to their African-American and Latino counterparts. The disparities were even sharper for autistic adults: whites averaged a little more than $31,000. African-Americans got about $4,000 less. Latinos averaged just over $18,000 per person annually.

“I’ve been looking for empirical numbers, trying to find out whether we’ve done better, worse, or whether we are in the same place,” said Areva Martin, president of Los Angeles-based Special Needs Network, an autism advocacy organization.

“We’ve had a ton of legislation. We’ve improved parent participation and better transparency from the state and the regional centers. But if you believe this study’s numbers, in terms of actual dollars spent, we haven’t moved the needle.”

Martin traces reform efforts to a 2012 state senate select committee hearing in response to a series of Los Angeles Times articles that documented widespread disparities, tied to race and ethnicity, in how the regional centers allocated their resources. Legislators tightened the centers’ public information requirements, mandating that they post annual reports showing how they had distributed their money.

But the most recent reports show widespread disparities persist, not only for autistic regional center clients, but in the entire scope of center services.

“This is not about autism. It’s about all disabilities. It’s a racial, ethnic equity issue,” said Barbara Wheeler, associate director of the University of Southern California’s Center for Excellence in Developmental Disabilities Education, Research and Service.

Jobs in 2017

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

At Forbes, Michael Bernick notes the disconnect between these efforts and the still-too-high unemployment numbers:

Looking to 2017, David Kearon the employment specialist at Autism Speaks recognizes the disconnect, but sees a momentum growing as success at some firms brings others on board. He writes:

“Moving forward, I think we as a community need to learn from the successes of the programs at companies like SAP and Microsoft — and also from small businesses like AutonomyWorks and ULTRA Testing — and apply them to other industries in which greater numbers of people with autism could contribute. I also think we need greater emphasis on strategies to help individuals with autism retain these jobs once they’ve been hired. I’m concerned that some programs move on too quickly after job placement, as if the work is done. For many people with autism, some type of ongoing support is critical to their success (and that of the business, as well). I am hopeful that over time, the cultures of these businesses can transform enough to provide these necessary supports in a natural way to employees who are differently-abled. Then, this movement will be truly sustainable.”

Dr. Hackie Reitman is an orthopedic surgeon in Florida who in 2016 founded DifferentBrains.comto promote neurodiversity in hiring, and spends much of his time now traveling throughout the country to meet with local employment initiatives. Looking to 2017, he notes that “Recently I was part of Trailblazing 2016, the autism entrepreneurship event put on in Broward County by Minerva and Boaz Santiago of the online platform, Picasso Einstein; then meetings with persons on the spectrum and advocates starting their own employment initiatives in Colorado, Tennessee and California. It’s not just the Microsofts and the Googles who have very high functioning employees with Asperger’s syndrome. It also can and must be the offices, the service businesses, the repetitive work that speaks to a workforce that enjoys doing it, are loyal employees, will never lie, will not call in sick and will be grateful to gain the gift of independence. Society needs to understand and embrace neurodiversity for the benefit of all of us. It’s amazing to see the grassroots initiatives.”

Kevin and Avonte's Law: Back to Square One

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress.

The House passed an amended version of Kevin and Avonte's Law, but the Senate did not act on this version before adjourning for the year.  Back to Square One.  Michell Diament reports at Disability Scoop:

Conservatives raised privacy concerns prompting additional language to be inserted in the bill before it passed the full House on the last day the body was in session. That left just one day for the Senate to act.

The changes, however, led some disability advocacy groups — including The Arc and the Autistic Self Advocacy Network — to publicly come out against the measure.
Specifically, the groups cited a provision added to the House bill that would allow law enforcement to use data from tracking devices to prevent “injury or death” not only of a person wearing such a device but also “caused by the patient assigned the tracking device.”

“What worries us is that police would be able to say, ‘we don’t know where they are and they’re autistic, so they might be a threat simply because they’re autistic,'” said Samantha Crane, director of public policy for the Autistic Self Advocacy Network. “We don’t want that data to be used for any other purpose other than to locate a missing person.”

Crane said her group and others were also troubled that the House bill would fund Kevin and Avonte’s Law by drawing money away from an existing program designed to help community-based organizations collaborate with police.

With the modifications in the House version dividing disability advocates, senators ultimately did not vote. Going forward, the bill would have to begin anew, a process backers say is likely.

Rule on Minorities and Special Education

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

Christina Samuels reports at Education Week:

With just a handful of weeks left in this presidential administration, the U.S. Department of Education released a final rule Monday that could have a major impact on how districts spend their federal special education money.

The department's regulation creates a standard approach that states must use in determining if their districts are overenrolling minority students in special education compared to their peers of other races. If the disparities are large enough, districts are required to use 15 percent of their federal allotment under the Individuals with Disabilities Education Act on "coordinated, early intervening services" aimed at addressing the issue.

...

The department's regulations have been released at the same time that Texas is facing close scrutiny after a newspaper investigation said the state was intentionally keeping its special education enrollment low. Recent research has also stated that there's evidence minority students are underenrolled in special education, not overenrolled.

The new rule attempts to address both of those issues, by forbidding states to create quotas or to artificially reduce their special education identification rates. States are also required to look at whether underidentification could be the cause of disproportionality. "Nothing in these regulations prevents States from working with their [districts] to ensure appropriate identification of children with disabilities and address any potential under-identification that may exist," the regulations state.

Office for Civil Rights Annual Report

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

U.S. Department of Education Office for Civil Rights has issued its annual report.  A couple of graphs:

Chiropractors

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

Bruce Y. Lee writes at Forbes:

Today Andrew Wakefield was a keynote speaker at the International Chiropractors Association's Annual Conference on Chiropractics and Pediatrics in Maui, Hawaii.
...
The Annual Conference on Chiropractics and Pediatrics now has something in common with the "Conspira-Sea Cruise", a week-long cruise hosted by the tour company Divine Travels to have conversations about...you guessed it..."conspiracies". Both had invited Wakefield as a guest speaker.
...
[The] "anti-vaccine movement" seems to be an organized attempt to present information not supported by science and convince you to stop vaccinating yourself or your children. As she wrote in Time (actually in time for Time), Meghan Moran, PhD, an Associate Professor of Health, Behavior and Society at the Johns Hopkins Bloomberg School of Public Health led a study that analyzed 480 anti-vaccination websites and found many false claims and attempts to discredit the government and medical practitioners. In fact, some websites seem to be masquerading as legitimate vaccine authorities by using titles such as "national" and "information". Do these websites really represent honestly concerned citizens or actually organizations with hidden agendas?

How many chiropractors are behind these efforts? Well, some chiropractors may see potential financial gain if vaccination rates go down. Try doing a web search for "chiropractors" and "vaccination", "infectious disease", "influenza", "measles", and other vaccine-related topics and you'll some interesting claims about how chiropractic techniques can help prevent and treat infectious diseases.

Not coincidentally, a chiropractor introduced Wakefield to Trump.