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Sunday, September 30, 2018

Tracking Devices: a Success Story

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

WTEN-TV reports that Project Lifesaver helped save a boy in Upstate New York
Saratoga County Sheriff's deputies say around 1 p.m. Saturday afternoon a 9-year-old boy living with Autism was reported missing.
Fortunately, the child is a member of the Sheriff’s Project Lifesaver Program and wears a transmitter bracelet.
Officers searched for about an hour before successfully tracking him down.
Program participants wear a transmitter bracelet which the Sheriff’s Office uses to locate the individual if they were to wander. In most cases, there is little to no cost to participates in the program.
If you have a family member with Autism, Alzheimer’s or any other condition and you are concerned that they may wander, please contact the Saratoga County Sheriff's Office to find out more about the program at (518)944-6288 email

Saturday, September 29, 2018

Antivaxxers and Fake News

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

This bogus idea has had an impact in Italy. Writes Francesca De Benedetti at The Independent:
“What Italy is seeing is not a vague sentiment, or parents' response to some abstract concern about vaccines. It's the product of real people and specific facts,” says British journalist Brian Deer.
“This is principally the achievement of the disgraced former British doctor Andrew Wakefield, and a group of enablers who work with him, aiming to destabilise public confidence in vaccines.

“Embittered after he was caught falsifying vaccine research, he can do this because of the opportunities provided by social media.”
Mr Deer has become the unofficial debunker of the claims of anti-vaxxers. Twenty years ago, Wakefield published a study in The Lancet suggesting an association between the MMR (measles-mumps-rubella) vaccine and autism and gastrointestinal diseases.
This paper is at the origins of parents’ growing scepticism towards vaccination – but Mr Deer showed that Wakefield had manipulated evidence and had a conflict of interest. As The Lancet itself had to admit, the study was “fake news” long before the term was popular.

Nevertheless, the fake news continues to be spread online, and public confidence in vaccinations continues to drop, and, as Mr Deer points out, the result is polarisation.As was the case with Donald Trumpwho tweeted and claimed that vaccines and autism are linked – at first Italian populists rode the wave of anti-vaccine sentiment in their election campaigns.

Friday, September 28, 2018

Trouble for Special Ed in Puerto Rico

At Bloomberg, John O'Neil  and Michael Elsen-Rooney report that Hurricane Maria worsened an already-bad situation for special education in Puerto Rico.  Many people are leaving the island, and schools are closing.
Puerto Rico has been operating under a court order to improve special education for 37 years. As of last year, 33.4 percent of public school students in the commonwealth are enrolled in such programs, compared with a national average of 13 percent in 2015, the last year for which there are figures. But while more numerous, Puerto Rico’s special education students fare far worse. Some 93 percent of them scored below the basic level on the National Assessment of Educational Progress test—nationally, that figure was 51 percent.
[Puerto Rico's education secretary Julia] Keleher said Puerto Rico’s special education program produces “terrible” results. Almost four decades ago, a judge made a similar observation in a ruling that the commonwealth had failed to meet its constitutional obligations to disabled students.
When the lawsuit was filed in 1980, only 3.9 percent of Puerto Rico’s students were classified as eligible for special education, compared with a national average of around 10 percent at the time. Keleher credits the lawsuit, begun just five years after she was born, with having forced the department to identify more students with disabilities. But she added that the current percentage of students designated as needing special education, more than eight times that of 1980, is “off the rails.”
Pressure from the lawsuit may have led educators to over-enroll, she said. Students were classified as being suitable for special education without sufficient screening. It was an impulse to err “on the side of, ‘Let me just help you, because we don’t want to be accused of not helping,’ ” Keleher said.
 There are other theories. Joyce Davila, the founder of Puerto Rico’s Autism Alliance, thinks the current 33 percent figure may be accurate—reflecting the high level of disability that stems from the island’s poverty. Susan Therriault, a managing researcher with the American Institutes of Research who has worked in Puerto Rico, said the high percentage may reflect the large number of students enrolled in private schools, some of which she claimed have a reputation for being reluctant to admit students with disabilities. As a result, an artificially large contingent of kids with special needs are left in public schools.

Wednesday, September 26, 2018

ASAN Opposes the Proposed "Public Charge" Regulation

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

From ASAN:
The Autistic Self Advocacy Network strongly condemns the Administration’s proposed “Public Charge” regulation, which discriminates against disabled and low-income immigrants and makes pathways to American citizenship contingent upon wealth and the absence of disability.
“Public charge” clauses have existed in US immigration law since 1882 and are a clear echo of the racist and ableist policies of the eugenics era. Immigrants deemed likely to become a “public charge” are unable to enter the United States or, if already present, apply for green cards in order to remain as permanent residents. Right now, only immigrants who are receiving cash assistance (such as Temporary Assistance for Needy Families) or who are institutionalized are considered likely to become a “public charge.” Rather than reversing this legacy of discrimination, the Trump Administration has doubled down and proposed making these regulations exponentially worse.
Under the proposed regulations, receiving or even being likely to receive almost any form of public benefit — such as Medicaid, Section 8 housing assistance, Medicare Part D, and SNAP — could make someone “likely to become a public charge.” These provisions would effectively exclude all low-income immigrants and many immigrants with disabilities, who are disproportionately more likely to be low-income or utilize social services. The proposed regulations also consider counting Children’s Health Insurance Program benefits, a cold-hearted move that would harm many low-income immigrant families. Community organizations are already reporting that these proposed regulations are discouraging immigrant families from applying for benefits they or their family members, including US-citizen children, are legally entitled to receive, negatively impacting their health, wellbeing, and quality of life.
The proposed regulations also explicitly discriminate against people with disabilities. The proposed rule singles out people with medical conditions that require “extensive medical treatment or institutionalization” and/or impact the person’s ability to work — in other words, people with disabilities — and says this can be counted against them during a public charge determination. This provision is unambiguously ableist and discounts the many contributions made by Americans with disabilities. Disabled immigrants who need health care they can’t pay for on their own will be caught in a catch-22: either they can use public benefits such as Medicaid, and be penalized for using public benefits as well asfor having a medical condition; or they can forgo necessary medical care and still be penalized for having a medical condition.
Disability or a need for supports and services should never impact someone’s immigration status. Immigrants, including low-income and disabled immigrants, are a vital part of our society. ASAN calls for the immediate dismissal of this immoral and indefensible proposed regulation. For more information on ASAN’s positions with respect to the proposed rule, contact Samantha Crane, our Director of Legal and Public Policy, at

Tuesday, September 25, 2018

Transition-Aged Youth

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.
At Current Psychiatry Reports, Amanda Bennett and colleagues have an article titled "Autism Spectrum Disorder and Transition-Aged Youth."  The abstract:
Purpose of Review
This article discusses common issues surrounding transition to adulthood in youth with autism spectrum disorder (ASD). We review recent evidence on co-occurring medical and mental health conditions and topics of education and employment, sexuality and relationships, independent living, and financial support.

Recent Findings
Transitioning individuals with ASD have increased risk for several medical and behavioral health comorbidities and should be routinely screened for co-occurring conditions. Evidence on interventions for mental health disorders is limited but emerging, particularly with respect to mindfulness training and cognitive behavioral therapy. Many autistic adults or their families express a desire for independent living, participation in education/employment, and intimacy and social relationships, but they often lack skills and/or resources to successfully achieve these outcomes.

The time of transition to adulthood for adolescents with ASD is an opportunity for physicians to provide anticipatory guidance and necessary supports around issues of community participation. To allow time for planning, these discussions should occur well before the child reaches adulthood. Clinicians should also routinely screen for and address medical and/or behavioral health comorbidities.
From the article:
In US law and policy, there is increasing emphasis on improving transition outcomes in general, and employment specifically, for individuals with disabilities, including ASD. Since 1990, the Individuals with Disabilities Education Act has required that schools develop a transition plan (including plans for employment) for any student who has an individualized education plan (IEP) [39]. Current federal law requires that the transition plan be developed by the time the child is 16 years of age, but some states require it to be done earlier. The Workforce Innovations and Opportunity Act of 2014 emphasized that VR [vocational rehabilitation] agencies need to work with employers to increase competitive employment outcomes for adults with disabilities.
Despite these federal rules, implementation of educational and VR policies varies greatly at the state (and local) level. In a study of outcomes of VR services across the US, it was found that only 36% of transition-aged (younger than 22 years of age) youth with ASD who received VR services between 2002 and 2011 were employed [40], but there was significant variability across states. In six states, more than half of the autistic young adults receiving services were employed, and in four states, less than 25% were employed. More recent data from those who received VR services in 2013 suggests some improvement, as over 56% were reported to have achieved competitive or supported employment [41]. The VR services most consistently associated with employment are job placement and on-job supports, yet other services such as assessment services, counseling services, and job search services are more commonly provided [41].
A recent randomized trial suggests that even greater improvements in employment outcomes are possible when job placement and on-job supports are emphasized and coordinated services are provided across schools, VR, and employers [42]. Wehman and colleagues [42] studied 49 students with ASD and an IEP who required moderate to high levels of support at baseline. Most of the students had academic skills below a third-grade level, but were able to independently dress, eat, and attend to personal hygiene [37]. The intervention group received 9 months of training on-site at two suburban hospitals where they rotated through job internships and participated in classes, learning job skills and social communication behaviors [37, 42]. The control group received interventions as specified in the IEP through their high school. At 3 months postgraduation, 90% of individuals receiving the intervention compared to 5.9% of controls were competitively employed. At 12 months postgraduation, 87% of the intervention group and 11.1% of controls were employed. Young adults in the intervention group were working an average of approximately 19 h per week with an average wage over $8.00/h when the state’s minimum wage was $7.25/h [37, 42].
The Wehman et al. [42] study is unique in that it is a randomized trial, but other studies suggest that successful employment is possible for many adults with ASD. For example, in the study of state employment outcomes mentioned above, one VR service provider reported an 87% success rate in obtaining competitive employment for adults with ASD [40]. Similarly, another study of 64 adults with ASD referred to VR for supported employment services found that 98% were successfully employed, although only 63% maintained their employment for more than 6 months [43].

Monday, September 24, 2018

Rethinking Special Education

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

Post by Johnny W. Collett, Assistant Secretary Office of Special Education and Rehabilitative Services United States Department of Education:
As a former high school special education teacher and state special education director, I have learned that delivering on the promises we have made to children and parents will not be achieved by merely tinkering around the edges.

Rethinking special education will require an unwavering commitment to address barriers that stand in the way of improving opportunities and outcomes for each child, and to make needed changes at the federal, state, and local levels. We must be willing to confront anything that does not facilitate needed improvement. That includes structures that limit opportunities for children with disabilities; practices that put the needs of “the system” over the individual needs of a child; policies that, no matter how well-intentioned, do not have the impact of improving outcomes for students; or laws and regulations that constrain innovation. We cannot ignore the challenges that students, parents, teachers and schools face.

Any policy that could deny education services to a student who needs them would be a failed policy. So we must root out anything that separates students from the individualized education they deserve.

The Office of Special Education and Rehabilitative Services is committed to confronting these—and any other issues—that stand in the way of a child’s success. We will partner with parents and families, individuals with disabilities—anyone and everyone who is focused on raising expectations and improving outcomes for individuals with disabilities.

This commitment means acknowledging that states, school districts, and parents know the needs of their students better than we do. Our goal is to provide them with as much flexibility and support as possible so that they can ensure their students’ needs are being met.
At The Mighty, Ellen Stumbo writes:
Giving states the “flexibility” to make decisions regarding special education concerns me.Some schools, states and districts do a wonderful job servicing kids with disabilities and some IEP teams work together wonderfully. But that is not the case for many children and their parents. I know of more parents who dread IEP meetings, who have to fight schools so that their kids receive the services and supports they need, many who have had to take legal action. There are schools that fail to meet IDEA. There are some states that follow IDEA well, and some that don’t, even though it is a federal law and special education services should be the same regardless of where you live.
We know federal laws were created in order to protect all students regardless of the state they live in. Without this uniformity, states can create different policies, procedures and laws. This could create situations where families in states with weak laws may consider moving to a different state. A migration that could cause states with strong laws to become underfunded and overcrowded, creating a new set of problems. These issues are already a reality, but at least there is a federal law on our side, regardless of where we live.

Sunday, September 23, 2018

Antivax Impact in Italy

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

Jason Horowitz at NYT writes about Italy's Five Star Movement.
Its co-founder raised links between vaccines and autism. Its political leader campaigned against a law making vaccines obligatory. Its myriad websites drew traffic with posts by vaccine skeptics, and its party representatives blamed vaccines for tumors and allergies. For one senator, vaccine scars were “branding for beasts.”
On Thursday, as school began this week around Italy, the Five Star Movement and its coalition partner, the League, passed a measure that allows children to stay in school as long as their parents attest that they have been vaccinated, or will be by March. No doctor’s note is required.
[Former health minister Beatrice Lorenzin] attributed the surge of distrust in vaccines to the fact that the diseases had become so rare as to seem unreal, to the debacle of a since-rejected and retracted report in the scientific journal The Lancet linking vaccines to autism, and to what she called “Doctor Google.”

By 2015, coverage had declined to about 85 percent. Cases of measles, which can cause blindness, brain inflammation, pneumonia and in some cases death, have been rising.
Italy’s “No-Vax” movement has risen, too. In Rimini, a hotbed of No-Vax activity and the site of a 2012 ruling by a local judge, later overturned, that linked autism to vaccines, anti-vaccination advocates attached streamers to planes that read, “Everyone to School. Freedom of Choice.”
Mattia Marchi, a spokesman for the Veneto chapter of Corveleva, a No-Vax umbrella group, said parents skeptical of vaccines still had little choice but to vaccinate.

“No one ever said that a vaccine causes autism,” Mr. Marchi said. “But if a thousand people see a U.F.O., do we want to tell these people that they are crazy or do we want to find a solution?”
Beppe Grillo, the co-founder of the Five Star Movement, has raised a link between vaccines and autism, suggested that vaccines weaken the immune systems of healthy children, and claimed that the pharmaceutical industry has pushed them for profit. Members of the party in the European Parliament have proposed eliminating some obligatory vaccinations for some public employees and professed a link between leukemia, tumors, allergies and autism to vaccinations.
At Vox, Julia Belluz cautions that measles outbreaks are not just attributable to the antivax movement alone. 
When describing why measles is spreading, the researchers and public health officials working on the ground in these countries talk about austerity, the economy, and failing public health systems.
  • A new paper in the European Journal of Public Health found that the parts of Italy that cut their public health budgets the most had lower rates of vaccine coverage. “Our analysis suggests that austerity measures adopted in Italy contributed significantly to the resurgence of measles,” the authors wrote. “We estimated that each 1% reduction in real public health expenditure per-capita corresponded to a 0.5 percentage points reduction in MMR coverage.”
In other words, an underfunded public health infrastructure may be more to blame for the uptick in measles than anti-vaxxers. “The [public health spending] cuts were mainly on prevention — like preventive clinics and also staff,” the study’s lead author, Veronica Toffolutti, a health economist at Bocconi University in Milan, told me. “Many people were not hired anymore as staff.” And without staff and services in place to vaccinate people, more people aren’t getting vaccinated, and measles is spreading.

Discrimination Lawsuit

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families, including discrimination.

At the Associated Press, Michael Casey reports on a federal lawsuit claiming that Party City discriminated against a New Hampshire woman when a sales manager learned that she is autistic.
The woman, Ashley Waxman, was allegedly denied a job at a Party City in Nashua, New Hampshire. She filed a complaint with the EEOC alleging the store had violated the Americans with Disabilities Act. The act prohibits employers from discriminating based on disability and requires that employees with disabilities be offered a reasonable accommodation, including the use of a job coach.
A 9/19 release from EEOC provide more detail:
 Party City Corporation violated federal law by failing to hire a qualified employee with a disability at its Nashua, N.H. location, after it became aware that she required a job coach as a reasonable accommodation for her disability, in violation of the Americans with Disabilities Act, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed today.
According to the EEOC's complaint, the disabled applicant, then a senior in high school who was on the autism spectrum and suffered from severe anxiety, had been receiving services from Easter Seals of New Hampshire for a number of years to build up her self-confidence, including around working and applying for a job. One of these Easter Seals employees went with her in October 2017 to apply for a sales associate job with Party City during its busy season. The applicant received a job interview, but when the hiring manager discovered that the woman accompanying her was not her mother and instead was a job coach, the hiring manager's attitude changed dramatically.
The EEOC's lawsuit further alleges that the hiring manager told the job coach that Party City had hired people "like that" (people with disabilities with job coaches) in the past and that it had not gone well. The hiring manager made disparaging comments about those individuals. Although both the applicant and the job coach explained to the hiring manager that the applicant had been successful shadowing others in previous retail jobs, as well as in a volunteer role at a day care center, the hiring manager was uninterested in either the applicant's abilities or in the limited role the job coach would play. The hiring manager repeatedly tried to cut the interview short by telling the job coach in a patronizing tone, "thank you for bringing her here," while the applicant was still in the room. The hiring manager also stated, in the applicant's presence, that the Party City employee who had encouraged the applicant to apply would hire anyone, and would "even hire an ant."
After Party City failed to hire the applicant because of her disability, Party City hired six sales associates in the days immediately after the applicant's interview. For at least two of the hires, it was their first job: one was a 16-year-old and the other was a high school graduate.
The Americans with Disabilities Act ("ADA") prohibits employers from discriminating based on disability and imposes a requirement that employees with disabilities be provided a reasonable accommodation, absent undue hardship on the employer. One of these accommodations can be the use of a job coach.
The EEOC filed suit in U.S. District Court for the District of New Hampshire (EEOC v. Party City Corporation, Civil Action No. 1:18-cv-838) after first attempting to reach a pre-litigation settlement through its conciliation process. The EEOC seeks back pay, compensatory and punitive damages, and injunctive relief. The agency's litigation efforts will be led by Senior Trial Attorney Mark Penzel.
"Federal law requires employers to consider disabled job applicants based on their abilities, not on demeaning stereotypes," said Jeffrey Burstein, regional attorney for the EEOC's New York District Office. "Party City completely failed to do so here."
EEOC's New York district director, Kevin Berry, added, "Employers cannot refuse to offer a reasonable accommodation required by law, absent undue hardship. Here, the job coach, who would only have helped cue the applicant with her job tasks as she learned her job and for whom Party City would not have had to pay, was a completely reasonable accommodation that would have caused it no hardship at all."
EEOC's New York District Office oversees New York, Northern New Jersey, Connecticut, Massachusetts, Rhode Island, Vermont, New Hampshire and Maine. EEOC enforces federal laws prohibiting employment discrimination. Further information about the commission is available on its website at

Saturday, September 22, 2018

Antivax Pockets in California

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

At Capitol Weekly, Chuck Mc Fadden talks to California State Sen. Richard Pan, a pediatrician and the legislature’s leading vaccine advocate.
Do the pockets of vaccine-resistant parents really pose a health threat to the rest of the state?
“It’s possible,” Pan says. “It’s confined to pockets, but because we live in such a mobile society, a carrier leaving a pocket can spread infection to new pockets. The solution is to shrink the pockets.”

Ryan Spencer, a senior vice president at the Mercury political consulting firm, which represents a number of medical groups, agreed.
“There would still be the risk of an outbreak anytime we have those risks,’” he said.
The vulnerable include students who can’t be vaccinated because of medical conditions, such as impaired immune systems, or whose vaccinations for various reasons don’t protect them from infection.
Spencer said the anti-vaccine movement appears stronger in affluent areas. “It’s because they haven’t been exposed to much illness,” he says. “It’s not like Darfur, where you see disaster up close.”

Friday, September 21, 2018

Autistic Person Is a Statewide Candidate in Georgia

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

Adam Murphy reports at WGLC-TV in Atlanta:
At State Farmer's Market in Macon, fresh fruits and vegetables aren't the only thing that's home-grown.

Born and raised in central Georgia, Fred Swann is running for statewide Commissioner of Agriculture, but it's not the only challenge he's facing.

"No challenge for someone on the autistic spectrum, no challenge it presents should hold them back from being a contributing member of society, even a politician," said Swann.

He's not only autistic, he's now the Democratic nominee for office.

"The outpouring of affection and support that I have gotten has been overwhelming," said Swann.

From his campaign website:
I was born and raised in Middle Georgia, in both Warner Robins and Macon by a single mother. For most of my childhood, she worked two, sometimes three jobs just to make ends meet to provide for our family, instilling in me the value of hard work. I spent much of my childhood with my grandparents.
After he retired, my grandfather took up farming on a side acre of land. He grew tomatoes, corn, snap peas, and other assorted crops. Today, he would be called a micro farmer. To him, he was just filling his days with productive work.
He would send his family home with bags of produce from his land. He also sold tomatoes on a roadside stand for extra money. I helped him work the land, pull weeds, really anything he needed. In exchange, I learned valuable lessons about hard work and developed a strong appreciation for our farmers. As a person with autism, I never forgot how therapeutic that work was for me.
Swann discusses autism at about 6:50 in this video:

Thursday, September 20, 2018

Special Education In Puerto Rico

Kyra Gurney reports at The Miami Herald:
It was the second day of the new school year in Puerto Rico, but 7-year-old Angel Torres wasn’t in class. He was at a physical therapy session, struggling once again to stand on his own, when the boy’s therapist asked his mom how school was going.
“Bad. Terrible,” Brenda López said, frustration spilling out. “The classroom isn’t suitable for him.”
A year after Hurricane Maria changed almost everything on the island, hundreds of parents like López were left struggling to find classrooms, teachers and therapists for their children with autism, Down syndrome or cerebral palsy. What had been a daunting task before the storm — finding a place where their special needs children could thrive — had become vastly harder afterward, as the government shuttered more than 250 schools and the education department scrambled to relocate students and staff. The Department of Education said in late August that it still needed to fill 132 vacancies for special education teachers. And that meant some kids like Angel, who has cerebral palsy and cannot walk on his own or talk, were left in limbo.

Wednesday, September 19, 2018


In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families

A family systems approach is required to identify the needs of families of children with autism. This paper explores how grandparents support children with autism and their parents using a family systems perspective. A thematic analysis of eighteen semi-structured interviews was conducted with participants from nine [Irish] families, capturing experiences of both parents’ and grandparents’. Themes identified were family recalibrating; strengthening the family system; and current needs and future concerns of grandparents. The views of families indicated the overwhelming need to acknowledge the grandparental role in supporting families that strengthen the family system by supporting the needs of a child with autism. Findings revealed that grandfathers have a calming role in these families where children have significant behavioural difficulties.
From the article:
Grandparents of children with ASD provide supports, not only to the children themselves, but also to their son or daughter whose child has autism. To reduce the burden families can experience, they would benefit from a family systems approach to empower grandparents to respond proactively to the needs of the family. It is incumbent upon professionals to devise supports to meet this need and to give recognition to grandparents of the valuable role they play. This research is a rallying call to professionals to consider the roles of grandparents more formally in their interactions with families of children with autism, and to identify supports to meet grandparents’ needs that ultimately improve the functioning of the family system

Tuesday, September 18, 2018

Opioid Withdrawal and Autism

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

Christina Samuels at Education Week:
Researchers examined the educational status of a group of Medicaid-eligible children in Tennessee ages 3 to 8. Some of those children were born with neonatal abstinence syndrome, meaning that they spent their earliest days coping with the health effects of opioid withdrawal. The other children were not diagnosed with the syndrome.
The children who faced opioid withdrawal as babies were more likely to be evaluated for special education services and, once evaluated, were more likely to be found eligible, according to the report, published in August in the journal Pediatrics. Most of the children's disabilities were in five categories: autism, developmental delay, "other health impairment," specific learning disability, and speech and language impairments

Monday, September 17, 2018

Another Step Forward for the EMPOWER Care Act

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.  

David J. Totaro, Chairman of the Partnership for Medicaid Home-Based Care (PMHC), issued the following statement on the House Energy & Commerce Committee passage of H.R. 3891 and H.R. 5306, two bipartisan measures that would improve the Medicaid program by strengthening access to and the integrity of home and community-based services.

"PMHC is grateful for the bipartisan support that the Committee has provided for H.R. 5306, the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources, and Care Act (EMPOWER Care Act). Introduced by Representatives Brett Guthrie (R-KY) and Debbie Dingell (D-MI), this measure reauthorizes the highly successful Money Follows the Person (MFP) demonstration program.

"The Money Follows the Person program was first authorized in the Deficit Reduction Act of 2005 with strong bipartisan support. Since that time, MFP has enabled an estimated 75,000 older adults and individuals with physical, intellectual, and developmental disabilities, to transition from institutional settings back to their homes and communities.

"Unfortunately, MFP's authorization expired over a year ago, and states have been operating through no-cost extensions. Eight states have already run out of MFP grant funds, and it is projected funds will run out for the remaining participants by the end of 2018. As a result, these states are already in the process of scaling back their programs and reducing dedicated staff and resources.

"As amended, the EMPOWER Care Act rectifies this situation by reauthorizing MFP through 2019. In addition, this important legislation improves the MFP program by reducing from 90 to 60 the number of days an individual must be in a nursing home before becoming eligible to transition to their homes or community settings. In addition, the EMPOWER Care Act enhances the reporting and accountability of MFP funding and requires HHS to conduct a best practices evaluation that will include the most effective strategies for transitioning beneficiaries from institutions to their homes or qualified community settings.

"As a result of its attributes, passage of the EMPOWER Care Act will strengthen access and reduce program costs by ensuring that individuals who could be helped by MFP to live in their homes and communities are not instead forced into an institution or to remain segregated in an institution.

"PMHC is also pleased to endorse H.R. 3891, which we believe will strengthen the Medicaid program's ability to protect those served by the program from abusive activity. We are particularly grateful for this legislation's expansion of scope for Medicaid Fraud Control Units (MFCUs) so they can better identify, investigate, and prosecute instances of patient abuse, or neglect.

"MFCUs play a vital role in securing the integrity, efficiency, and effectiveness of the Medicaid program. However, MFCUs are currently restricted in their efforts to investigate patient abuse and neglect complaints in certain settings. H.R. 3891 empowers MFCUs to undertake this activity across all settings.

"We believe H.R. 3891's introduction by Representatives Tim Walberg (R-MI) and Peter Welch (D-VT) will do much to strengthen the integrity of the Medicaid program. We also look forward to working with the Committee on additional reforms that PMHC has proposed to protect the individuals who depend on Medicaid services from fraud, abuse, and neglect.

"Thanks to these measures, Medicaid recipients may soon realize strengthened access to high-quality, low-cost, consumer-preferred home and community-based services. We are confident decision makers will achieve improved outcomes and significantly reduced program costs from their efforts, and we look forward to working with lawmakers as they continue their important work to strengthen individuals' access to high-quality, high-value home-based care."

PMHC is comprised of organizations representing home care agencies, associations, MCOs and other payers, and business affiliates who have come together to improve the quality and integrity of Medicaid funded home- and community-based services (HCBS). Recognizing the integral role of home- and community-based care in the Medicaid program, PMHC is dedicated to advancing and supporting public policies that strengthen the Medicaid program for recipients and taxpayers alike.

Sunday, September 16, 2018

Amazon Allows Sale of Quack Autism "Cure"

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous"cure" involves bleach.

Over the past few months, I have been working on exposing and uncovering individuals that sell miracle cures. Individuals that attempt to sell products that “cure” or “treat” an illness in the United States are subject to regulations enforced by the Food and Drug Administration. A miracle cure used by parents to “cure” autism Miracle Mineral Solution (MMS) is not legal for sale for internal use in the United States. However, vendors use Amazon to sell Miracle Mineral Solution, and we must report this to the FDA.
Amazon knows customers are buying this product and making MMS based on their product recommendations to consumers. By allowing their platform to be used to sell MMS, I feel Amazon is responsible for the poisoning and abuse of autistic children around the United States.
Shame on you, Amazon. Stop allowing sellers to market a product that the FDA warns people from using.
Amazon must be held accountable.
Please report Amazon for Unlawful Sales of Medical Products on the Internet.

Saturday, September 15, 2018

Important Forthcoming Book

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

In 1994, Peter J. Hotez's nineteen-month-old daughter, Rachel, was diagnosed with autism. Dr. Hotez, a pediatrician-scientist who develops vaccines for neglected tropical diseases affecting the world's poorest people, became troubled by the decades-long rise of the influential anti-vaccine community and their inescapable narrative around childhood vaccines and autism. The alleged link between the two was first espoused in a fraudulent scientific paper, long since retracted, but the story shows no signs of letting up. As a result, we've seen deadly and disabling outbreaks of vaccine-preventable diseases around the country, and Texas, where Hotez lives, is at particular risk.
In Vaccines Did Not Cause Rachel's Autism, Hotez draws on his experiences as a pediatrician, vaccine scientist, and father of an autistic child. Outlining the arguments on both sides of the debate, he examines the science that refutes the concerns of the anti-vaccine movement, debunks current conspiracy theories alleging a cover-up by the CDC, and critiques the scientific community's failure to effectively communicate the facts about vaccines and autism to the general public, all while sharing his very personal story of raising a now-adult daughter with autism.
A uniquely authoritative account, this important book persuasively provides evidence for the genetic basis of autism and illustrates how the neurodevelopmental pathways of autism are under way before birth. Dr. Hotez reminds readers of the many victories of vaccines over disease while warning about the growing dangers of the anti-vaccine movement, especially in the United States and Europe. A former US Science Envoy for the Department of State, he also explains what's at stake if the movement continues to gain ground. Opening with a foreword by leading medical ethicist Arthur L. Caplan, this book is a must-read for parent groups, child advocates, teachers, health-care providers, government policymakers, health and science policy experts, and anyone caring for a family member or friend with autism.

Friday, September 14, 2018

A Community Responds to Bullying

In The Politics of Autism, I discuss challenges facing autistic adults and children One is bullying.

At KABC-TV in Los Angeles, Rob McMillan reports on a Colton, CA middle school student with autism.
"Every time when I start school, I've been bullied," Samuel Aragon, 13, said. "I just want the bullying to stop."

Aragon's mother, Desiree Reyes, said her son was particularly troubled by a recent incident, in which her son's Nike shoes were stolen. The black and white Air Jordans were allegedly stolen from his locker by a classmate.

"It's not fair for kids who don't speak up, or can't speak up, because their voices can't be heard," Reyes said.

Furious, Reyes posted a request for help on Facebook, alerting parents to what happened.

But what happened next was a surprise. The community raised $215 to buy her son a new pair of shoes. The effort was spearheaded by Colton resident Daniella Chavez.

Thursday, September 13, 2018

Autism, Education, and the European Union

In The Politics of Autism, I discuss the need for more study of the issue in other countries.

At PLOS One, Monika Roleska and colleagues have an article titled: "Autism and the  Right to Education in the EU: Policy Mapping and Scoping Review of the United Kingdom, France, Poland and Spain."  The abstract:
Autistic people may have different educational needs that need to be met to allow them to develop their full potential. Education and disability policies remain within the competence of EU Member States, with current educational standards and provisions for autistic people implemented locally. This scoping review aims to map EU and national special education policies with the goal of scoping the level of fulfilment of the right to education of autistic people.
Four EU countries (United Kingdom, France, Poland and Spain) were included in this scoping review study. Governmental policies in the field of education, special education needs and disability law were included. Path dependency framework was used for data analysis; a net of inter-dependencies between international, EU and national policies was created.
Results and discussion
Each country created policies where the right to free education without discrimination is provided. Poland does not have an autism specific strategy, whereas the United Kingdom, France and Spain have policies specifically designed for autistic individuals. Within the United Kingdom, all countries created different autism plans, nevertheless all aim to reach the same goal—inclusive education for autistic children that leads to the development of their full potential.
Policy-making across Europe in the field of education has been changing through the years in favour of autistic people. Today their rights are noticed and considered, but there is still room for improvement. Results showed that approaches and policies vastly differ between countries, more Member States should be analysed in a similar manner to gain a broader and clearer view with a special focus on disability rights in Central and Eastern Europe
From the article:
This study provided vital information on the right to education of autistic people in the UK, France, Poland and Spain. The scope of this study only included four countries, therefore the results cannot be generalized and clear conclusion on the average level of the fulfilment of the right to education cannot be drawn. More countries should be analysed to get a better picture of the situation across the EU. Additionally, since this is the first in a series of studies that map SEN policy in the EU, the findings have not been able to be triangulated to ensure reliability. Furthermore, the initial pool of identified studies has not been examined by other authors, meaning the reliability of the screening process cannot be guaranteed. More research should also be conducted to establish whether strategies that are in place have an effect on autistic children, such as improved learning, skills and higher rates of participation in education. To the best of our knowledge, there are no previous studies that have examined whether education of autistic people in EU countries is directed to development of their talents, creativity and provides them with skills they need to successfully progress into employment. To this day, the research in the field of education and autism policies in the EU as well as globally is scarce and remains an important gap in autism research. It is for this reason that this study aimed to review existing information as well as attract interest to conduct more research in this field in the future.

Wednesday, September 12, 2018

ASD in Adult Psychiatric Inpatients

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence

At Clinical Practice & Epidemiology in Mental Health, Samuel Tromans and colleagues have an article titled "The Prevalence of Autism Spectrum Disorders in Adult Psychiatric Inpatients: A Systematic Review."  The abstract:
Whilst the prevalence of autism spectrum disorders in adults within the community setting is well-established, less is known about the prevalence among adults based within a psychiatric inpatient setting.
To conduct a systematic literature review pertaining to the prevalence of autism spectrum disorders among the adult psychiatric inpatient population.
Eligibility criteria included: (a) investigation of the prevalence of autism spectrum disorders (b) adult psychiatric inpatient study population (c) published in English language. Electronic databases accessed included PubMed, Medline, CINAHL, PsycINFO and EMBASE. Additionally, the ancestry method was utilised for the references of eligible papers, as well as grey literature searches and consultation with experts in the field.
From the search, 4 studies were identified which satisfied the inclusion criteria, conducted in a variety of inpatient psychiatric settings, including secure forensic and intellectual disability units and a state psychiatric hospital. There were significant differences in methodological approaches, including the screening tests, diagnostic instruments and diagnostic criteria utilised. Autism spectrum disorder prevalence estimates varied considerably, from 2.4-9.9%.

From the limited research data currently available, it appears that the prevalence of autism spectrum disorders is increased in inpatient psychiatric settings relative to the general population. There is a need for further high quality research in this patient group, to add to this limited evidence base, as well as in developing effective strategies to identify patients with a high likelihood of autism spectrum disorders within this setting.