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Wednesday, October 17, 2018

Chronic Absenteeism

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

A new report from CDC titled" Chronic School Absenteeism Among Children With Selected Developmental Disabilities: National Health Interview Survey, 2014–2016."  The abstract:
Objectives—This report describes associations between chronic school absenteeism and selected developmental disabilities (DDs) among school-aged children.
Methods—Using the 2014–2016 National Health Interview Survey, multivariate logistic regression models were fit to estimate the association between DDs  attention deficit/hyperactivity disorder [ADHD], autism spectrum disorder, intellectual disability, or other developmental delay) and chronic school absenteeism controlling for demographics and co-occurring physical health conditions among children aged 5–17 years.
Results—During 2014–2016, the overall prevalence of ADHD was 10.6%, autism spectrum disorder was 2.5%, intellectual disability was 1.3%, and other developmental
delay was 3.8% among children aged 5–17 years. Children with some types of DDs examined had significantly higher odds of chronic absenteeism compared with children who did not have a DD. Specifically, children with ADHD (adjusted odds ratio [AOR]: 1.84; 95% confidence interval [CI]: 1.16–2.91), autism spectrum disorder (AOR: 2.89; 95% CI: 1.59–5.27), and intellectual disability (AOR: 1.57; 95% CI: 1.03–2.39) were more likely to have had chronic school absenteeism than children without these conditions.
Conclusions—Children with DDs had higher chronic school absenteeism. Associations remained after controlling for demographics and co-occurring physical health conditions. Similarly as the number of DDs increased, the odds of chronic school absenteeism increased. These findings show that both the type and number of DDs are associated with school attendance

Tuesday, October 16, 2018

Housing in the San Diego Area

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their familiesHousing is a big one for autistic adults.

Gary Warth at the San Diego Union-Tribune:
Three apartment buildings expected to open in Otay Mesa next July will provide some relief for area families in need of affordable housing and also answer a pressing need to help people with mental health issues live independently.
Pacifica at Playa del Sol in Otay Mesa will include 42 affordable apartments for qualifying tenants, with 12 units specifically for low-income residents with developmental disabilities.

This will be the third project built in a public/private partnership in the county that has included the units for people with developmental disabilities.

“Lately we’ve begun to make some tremendous inroads into the field of affordable housing,” San Diego Regional Center Executive Director Carlos Flores said at a Monday groundbreaking ceremony for the project.
...
San Diego Regional Center will help provide assistance to them in a variety of ways, Flores said. That assistance may include transportation, employment opportunities and lessons in cooking, budgeting and cleaning.
...
The development is one of six projects supported by the Innovative Housing Trust Fund, which Cox said is part of a $25 million investment to create 523 affordable units from Vista to South County.

People interested in living at Pacifica at Playa del Sol can learn how to apply by calling (760) 484-2831.

Sunday, October 14, 2018

Autism in a Canadian Municipal Election

In The Politics of Autism, I discuss the need for more research on autism in countries other than the United States.

Surrey First is a political organization in Surrey, British Columbia, Canada. In the campaign for the October 20 election, it is putting emphasis on autism.  A release:
Surrey First mayoral candidate Tom Gill wants to expand his city’s efforts to make sure Surrey’s 1,600 children with Autism Spectrum Disorder (ASD) feel at home in Surrey’s parks, pools, rinks and community centres. This summer, Surrey introduced “Sensory Friendly Spaces” at public events and has provided training to 100 of its recreational centre staff.

“I want Surrey to lead the country in inclusivity, particularly for our children,” said Gill. “Here in Surrey we’ve made a terrific start, but I want to take it further faster. Our Surrey First team wants to see another 500 of our parks, rec and library staff trained by June of next year, offer training to the more than 3,500 soccer, baseball, hockey and football coaches in our city, and pilot a Snoezelen sensory room in our new Clayton Community Centre which is under construction and set to open in summer 2020.”

Developed in Holland nearly 40 years ago, the Snoezelen (“explore and relax”) sensory rooms use sound, light, colour and texture to provide a multi-sensory experience for children with autism. Gill said he wants the pilot room to be a template for other Snoezelen rooms.

Gill said he wants to work with organizations such as the Canucks Autism Network and Pacific Autism Family Network to become a “champion for inclusion” that ensures children with autism and their families feel welcome and included.

Saturday, October 13, 2018

Unvaccinated

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

Caroline Kee at Buzzfeed:
Although overall vaccination coverage among children in the US remained relatively stable in 2017, a growing percentage of toddlers have received no vaccines at all, according to a new report from the CDC.
According to immunization guidelines, children should get vaccinated against 14 potentially serious diseases before their second birthday — but a number of very young children in the US have not been vaccinated against any of these diseases, according to the report, which looked at children aged 19 to 35 months.
The proportion of children who hadn't been vaccinated at all by age 2 was small compared to the millions of children who were vaccinated, but that proportion is gradually increasing. It rose from 0.9% for children born in 2011 to 1.3% for children born in 2015, according to the report.

From PBS:
In The Vaccine War — a documentary that first aired in 2010, and was then updated in 2015 against the backdrop of a measles outbreak — FRONTLINE took a powerful look at why there is still fear about vaccines among some parents, despite established scientific consensus that there is no link between vaccines and disorders like autism.
As FRONTLINE reports in The Vaccine War, parents who choose not to vaccinate their children have reasons that are complex — involving their perceptions of medical risks and benefits, and also ideological beliefs about parenting, personal choice and the limits of government.

Friday, October 12, 2018

New Head of OSEP


From the US Department of Education:
Laurie VanderPloeg will lead the Office of Special Education and Rehabilitative Services’ (OSERS) Office of Special Education Programs (OSEP) starting in November.
“My focus will be on developing and supporting an effective system that is going to meet the unique and individual needs of children with disabilities,” VanderPloeg said. “We need to look at the structures we have in place to ensure that each child is prepared for success.”
VanderPloeg started her career as a high school special education teacher at Wayland Union Schools in Wayland, Michigan.
She spent 15 years teaching high school and middle school students prior to earning her master’s degree in special education administration from Grand Valley State University in Grand Rapids, Michigan.
Since earning her master’s, VanderPloeg has served as the supervisor of special education for the Grand Rapids Public School District, a special education consultant with the Michigan Department of Corrections, and most recently as the director of special education for Kent Intermediate School District.
Learn more about Laurie VanderPloeg

At Education Week, Christina Samuels adds some detail:
VanderPloeg is currently president of the board of directors of the Council for Exceptional Children, an organization representing special education professionals. She was also a former president of the Council of Administrators of Special Education. And, her ties to western Michigan are deep, just like those of Education Secretary Betsy DeVos. A graduate of Grand Valley State University in Grand Rapids, VanderPloeg was a middle and high school special education teacher for 15 years in western Michigan school districts before entering administration.

Thursday, October 11, 2018

Labor/HHS Appropriations

The Politics of Autism discusses legislation before Congress.

From the Autism Society
On September 28, 2018 President Trump signed the annual appropriations bill for programs within the Departments of Labor, Health and Human Services, and Education (L-HHS-ED). Most disability programs are level-funded or provided slight increases. In addition, two new laws were funded. Kevin and Avonte’s Law received the authorized amount of $2 million for competitive grants awarded to non-profit and State and local entities to prevent wandering and locate missing individuals with cognitive disabilities, such as Alzheimer’s Disease, autism,or other developmental disabilities, as described in the law. Another law passed in this Congress, the RAISE Family Caregivers Act, was provided $300,000 to establish the Caregiver Advisory Council. Other highlights include the following:
  • An $86 million increase for special education IDEA state grants and $10 million more for preschool-age children with disabilities.
  • An increase of $1.5 million for professional development and the development of evidence-based services for people with autism through the Health Resources and Services Administration.
  • A $4 million increase for research into independent living for people with disabilities through the Administration for Community Living.
  • A $26 million increase for the Maternal and Child Health Block Grant, a flexible grant program providing home visiting, early childhood programs, and professional development, including those specific to assisting people with autism.
  • A $15 million increase for the Centers for Disease Control and Prevention’s (CDC) center providing surveillance, research, and services for those with developmental disabilities.
  • A $2 billion increase to the National Institutes of Health (NIH) to provide basic bench research.

Wednesday, October 10, 2018

Carlton Palms Coda




Carlton Palms —a Florida home for people with severe disabilities beset by rapes, rats and abuse — officially shut its doors Saturday, state officials announced.
The last of its 190 residents moved to a new community-based home over the weekend after years of abuse, violence and death perennially plagued the institution.
“Carlton Palms has officially closed,” said Barbara Palmer, who heads the Agency for Persons with Disabilities. “We have successfully transitioned nearly 200 people from an institutional placement into community homes. With this very important move for these individuals, we believe everyone will be much happier, healthier and have an opportunity to thrive in their communities.”
Carlton Palms, run by Bellwether Behavioral Health, was the only Central Florida institution licensed to care for intellectually disabled Floridians with severe behavioral challenges. Over the the last several months, residents have transitioned into smaller, community homes selected by their parents or guardians. Some moved back to their homes in Florida, others, out of state.

Tuesday, October 9, 2018

Latest "Breakthrough"

In The Politics of Autism, I discuss various ideas about what causes the condition and how to treat it.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "

From The Daily Mail:

Autism breakthrough: New drug may 'turn down' enzyme that hijacks social behavior in people on the spectrum

A treatment for adults on the autism spectrum may be in sight, thanks to a new discovery.
After decades of research, scientists at Florida Atlantic University (FA) have discovered a new pathway in the brain linked to behavioral symptoms of autism - and a drug that may quell them.

Some autism advocates have increasingly been pushing for people on the spectrum to not be treated as 'disordered,' but rather as simply different.

On the other hand, the FAU researchers note that autism also frequently comes with physiological problems - particularly for the gut.

There are currently no treatments for autism in adults, but the team discovered a drug treated the behavioral 'disruptions' in mice genetically engineered to have autism, suggesting it might do the same for people on the spectrum.

Monday, October 8, 2018

Vaccine Hesitancy

To understand vaccine hesitancy, we need to understand how parents and providers navigate from the facts as they exist to a vaccination decision, a path that is influenced by surrounding culture (Figure 2). The Internet, and especially Web 2.0, are starting points for many: we cannot ignore these accessible sources of information and misinformation. One must assume that by now virtually all parents have heard that vaccines cause autism. How would this “fact” play out on Vulcan (Spock’s planet of origin, where logic is venerated and emotion vilified)? Parents would view the data through a probabilistic lens and conclude that the purported link is extremely unlikely. On Earth—where antiscience, fake news, and “alternative” facts have free reign—many people cannot differentiate the misinformation mash-up from scientific consensus. (Are there Vulcans who would see glaciers disappear before their eyes and deny that their planet was warming?) Science is under attack, and science agencies are degenerating. It is difficult to refute the fact that vaccines cause autism for parents who sense that (mainstream) science is not always right.
The final arbiter of decisions for Earthlings is, of course, the human mind—a computer that retains ancient algorithms that were responsible for its evolutionary success . One hears about a particular outcome (autism) in an exposed (vaccinated) person, and that is where the thinking stops: the association is confirmed. (Actually, the thinking never starts—our tendency to form snap judgments is innate, and we instinctually err on the side of false positives.) The end result: One case of autism in a vaccinated child is enough for me. No vaccines! Parents who think that vaccines can have serious side effects (Figure 2) are, technically, correct (Table 2).

Parents who color their interpretation of this fact through the they can’t prove vaccines are safe lens are also, technically, correct—science cannot rule out associations between vaccination and adverse events with absolute certainty. However, this is not a failure—it is the way science works. Science seeks evidence to reject or fail to reject the null hypothesis—that being, for example, vaccines do not cause autism. In failing to reject this null hypothesis, we run the risk of making an error (believing that vaccines do not cause autism when, in fact, they do). Our chances of making that error may be very, very small, but they cannot be zero (unless we test every single person who ever did or did not receive a vaccine, which is, well, every single person). This is a difficult concept for people to understand, especially those educated in the United States, a country where math and science education may soon qualify for life support.

Sunday, October 7, 2018

A Troubled Provider


Elisha Anderson and John Wisely at The Detroit Free Press:
Macomb County plans to cut ties with Michigan’s largest autism therapy provider, Centria Healthcare, after a slew of problems including an employee caught on video abusing an autistic child.
The decision follows a similar move by Lapeer County last year, which dumped Centria amid mounting frustrations with the company. Centria said it was told Lapeer wanted a cheaper provider but documents obtained by the Free Press show broader problems in both counties.
In Macomb, community mental health officials cited Centria repeatedly for things like patient care, billing and training issues. Last year, it placed the company on probation.
Then after a video showed a Centria employee taunting, dragging, pushing and swatting a 5-year-old autistic girl during a therapy session in March, the county decided to part ways. The transition to new providers is expected to be completed by the end of the year.
Nearly a year ago, the Free Press began examining thousands of internal and public documents related to Centria and interviewed former executives and employees who claimed the business has engaged in billing fraud, violating patient privacy, forgery, falsifying reports and employing unqualified people in an effort to boost profits.

Centria denies any wrongdoing and sued three former employees for defamation. That case is pending in Oakland County

Saturday, October 6, 2018

Special Education in New York City


Elizabeth A. Harris at NYT:
By the Education Department’s own accounting, more than 25 percent of students with disabilities, or nearly 50,000, did not receive the kind of specialized instruction to which they were legally entitled to in the 2016-17 school year, the most recent year for which that information was available. That was actually better than the year before, when more than 40 percent of students with disabilities did not receive their mandated instruction.

In many cases, the city doesn’t even know in real time if children are getting what they need because the computer system designed to keep track of interventions, which has cost the city at least $130 million, has been riddled with technical glitches and systemic problems since it was instituted in 2011.
While the graduation rate for all students has improved significantly in recent years, just 43.4 percent of students with disabilities finished high school on time in 2017, nearly 30 percentage points lower than the citywide rate. Nearly half of those graduates with disabilities received what’s called a local diploma, with requirements that are less rigorous than the norm.
Will Mantell, a spokesman for the department of education, said the city has made changes to improve special education by hiring more staff, and enhancing training and data tracking. “We’ve made real progress,” Mr. Mantell said. “We know there’s more work to do, and this is a focus area for the chancellor and the D.O.E.”
In the meantime, for students across the spectrum of disability, navigating the system can be a draining battle. “We find that families of students with a range of needs struggle to get the evaluations and services that their children need,” said Randi Levine, policy director of Advocates for Children of New York, which often intervenes with the Education Department on behalf of families. “We hear from families whose children only need speech therapy who are having difficulty getting it. And we hear from families whose students have autism and a range of complex needs who are having difficulty getting the classes and services their child needs.”

Friday, October 5, 2018

Benefits of Minimizing Restraint and Seclusion

In The Politics of AutismI discuss the use of restraint and seclusionMany posts have mentioned these techniques, both in schools and facilities for people with disabilities.

A release from Ukeru:
A new longitudinal study, just released in the journal Advances in Neurodevelopmental Disorders, illustrates one behavioral healthcare facility’s ability to dramatically reduce physical restraint and completely eliminate seclusion by shifting to an approach of comfort versus control. The article, “Evaluation of a Program Model for Minimizing Restraint and Seclusion,” follows the sharp decline of the use of restraint and seclusion from 2004 – 2016 at Grafton Integrated Health Network, a Virginia-based facility that serves at-risk and high-risk clients (both children and adults) with intellectual, developmental, and psychiatric disabilities.
The study evaluated all of Grafton’s organizational operations, which included more than 750 employees and 3,244 clients in 2016. In the year before the program began (2003), there were 6,646 incidents of restraint and seclusion.
“We knew there had to be a better way,” said Kim Sanders, co-author of the study and Executive Vice President of Grafton. “Not only were these techniques harmful to both our clients and our staff, they simply didn’t work. In fact, consistent with the data, we saw that using restraint and seclusion was just reinforcing and maintaining aggression and violence. We decided to create a new model for addressing challenging behavior which was grounded in respect for all involved.”
A comfort versus control mindset was introduced as part of a trauma-informed approach. This method minimizes the chance for everyday operations to traumatize or re-traumatize clients during service delivery. The Grafton philosophy taught response blocking, promoted an understanding of behavioral intent and client needs, and encouraged the development of creative solutions as meaningful alternatives to restraint and seclusion. This cultural shift asked employees to reassure clients, ask questions instead of making assumptions, be flexible, let go of the need to have the “upper hand,” and treat others with kindness and compassion.
The results were dramatic:
  • A 99% decrease in restraint frequency
  • A 100% reduction seclusion (from 253 cases in 2003 to 0 in 2015 and 2016)
  • A 97% decrease in staff injury from a restraint
  • A 64% decrease in client-induced staff injury
  • An increase in client goal mastery 133% from 2003 to 2016
  • A savings of over $16 million in lost time expenses, turnover costs, and workers’ compensation policy costs
“This model of care not only has an impact on restraint and seclusion incident rates but has created a profound culture shift across the entire organization,” said James Stewart, Grafton’s Chief Executive Officer. “Our approach is rooted in the belief that the use of physical restraints is not only unnecessary, but also unproductive and that all intervention — educational and behavioral — should be built on an approach of comfort versus control.”
Now, through its Ukeru Systems division, Grafton has trained more than 100 other organizations on the conceptual and technical elements of the program. Ukeru provides support and capacity building to caregivers, teachers, parents and others, helping them to implement the model in their own environment.
“Our system shows that you can eliminate the use of restraint and seclusion without compromising safety, as long as caregivers are properly trained,” said Sanders, who is also the President of Ukeru. “Ultimately, it is about receiving, engaging, sensing, feeling and responding to what someone is trying to communicate to us through their actions while maintaining the safety of all those involved.”

Thursday, October 4, 2018

ESSA Is Often Falling Short for Students with Disabilities


From the National Center for Learning Disabilities:
NCLD is proud to announce the release of Assessing ESSA: Missed Opportunities for Students with Disabilities. This new report provides the first national analysis of how state plans include and serve students with disabilities under the Every Student Succeeds Act (ESSA), the nation’s new K-12 education law.
NCLD is committed to improving outcomes for students with disabilities, and we believe that through ESSA, states have an obligation and critical opportunity to make sure that our students are front and center in discussions about achievement, equity, school quality, accountability and improvement. States can do more to take advantage of this opportunity, and therefore must reflect on their progress and strive to make improvements in how they serve all learners.
The report rates each state’s, the District of Columbia’s and Puerto Rico’s ESSA plan on three key areas:
  • Holding Districts and Schools Accountable
  • Helping Struggling Schools
  • Collaborating to Support All Schools
The results of the ESSA analysis are troubling. Groups of students, including students with disabilities, low-income students and students learning English, are frequently neglected. For example:
  • 33 states do not include the academic performance of specific groups of students, like those with disabilities, in their school rating systems.
  • Only 18 states set the same long-term goals for students with disabilities as students without disabilities.
  • Roughly half of states don’t provide a detailed description of how they will work with their existing special education plans to improve outcomes for students with disabilities.

The bottom line: Most states need to do more.

Check out how your state scored in each rating area and read the full report at NCLD.org/AssessingESSA.

Wednesday, October 3, 2018

Medi-Cal and Behavioral Health Treatment

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities

A release from CARD:
Center for Autism and Related Disorders (CARD) welcomes the announcement from the State of California's Department of Health Care Services (DHCS) that Medi-Cal will cover behavioral health treatment, including applied behavior analysis (ABA), regardless of an eligible beneficiary's diagnosis. Earlier this year, DHCS announced that Medi-Cal enrollees under 21 whose diagnosis may benefit from ABA, as determined by a physician or psychologist, have access to behavioral health treatment.
"ABA has been shown to be effective in the treatment of many diagnoses, such as substance use disorder, Down Syndrome, and eating disorders, to name a few," said Michelle LaBruzzi, MA, BCBA. "We are looking forward to expanding the families we can help in addition to those in the autism community."
...
"We are happy to see California take the lead in expanding access to applied behavior analysis for our Medi-Cal community," said Doreen Granpeesheh, PhD, BCBA-D, founder of CARD.
In addition to traditional 1:1 intensive ABA programs, CARD offers focused ABA programs and several targeted programs, including feeding, pill swallowing, social skills groups, short and long-term treatment of severe problem behavior, and more focused parent training. Parents and caregivers are encouraged to participate in parent/caregiver training, which is available during non-traditional work hours and online

Tuesday, October 2, 2018

Big Funding Deal


From Autism Speaks:
Autism Speaks advocates for appropriations to ensure federal agencies that run programs for autism research, services, and supports are appropriately funded.
Twelve appropriations bills, which provide funding for the federal government in the next fiscal year, must pass each year. These bills must be enacted by October 1, or the government shuts down due to lack of funding.
Last week, an appropriations “minibus” was enacted that includes the funding bills for the Department of Defense, and the Departments of Labor, Health and Human Services, and Education for Fiscal Year 2019.
This is the first time the Labor-HHS-Education appropriations bill has been completed before October 1, the start of the new fiscal year, since 1999.
This spending package includes wins for autism research and services, including
  • $23.1 million for autism activities at the Centers for Disease Control and Prevention (CDC). CDC’s work includes providing essential data on autism spectrum disorder (ASD), searching for risk factors and possible causes, and developing resources to help identify children as early as possible.
  • $1.5 million increase to the Health Resources & Services Administration (HRSA) for autism activities, with $33.5 million of HRSA funds designated for LEND.
  • $7.5 million for the Autism Research Program at the Department of Defense. Since its inception in Fiscal Year 2007, close to $100 million has been directed to promote innovative research designed to advance the understanding of ASD and to improve the lives of those living with autism. 
  • $12.4 billion for IDEA special education, an $87 million increase over last year.
These funding increases and focus on autism-specific programs keep us on a path toward new autism discoveries and supports.
We owe a special thanks to Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA)who led the effort for these programs in the House of Representatives, and Senators Amy Klobuchar (D-MN) and Thom Tills (R-NC) who led the effort in the Senate.

Monday, October 1, 2018

In Autism Intervention, Cheap Does Not Always Mean Good


At Autism, Giacomo Vivanti, Aubyn Stahmer have an article titled "Early Intervention for Sutism: Are We prioritizing Feasibility at the Expenses of Effectiveness? A Cautionary Note."
In the ASD early intervention field, the concept of sustainability is frequently—and mistakenly—equated with affordability, which refers to the initial costs of training providers and ongoing costs of implementing an evidence-based intervention. Accordingly, while factors promoting sustainment of interventions are under-researched, there is an increasing trend toward reducing intervention costs to make interventions more feasible for use in the community. In ASD, this is often accomplished by decreasing the intensity of an intervention or by lowering specialization standards or training requirements for those delivering the intervention. Three phenomena illustrate this trend: (1) the growing emphasis on low-intensity, parent-mediated early interventions (both in terms of publicly funded programs and new interventions being developed and tested; Nevill et al., 2018); (2) the increased reliance on paraprofessionals with minimal training or supervision to deliver interventions (e.g. behavior technicians who receive 1 week of training overall; Leaf et al., 2017); and, perhaps as a result of (1) and (2), (3) poor adherence to evidence-based practice protocol as providers adapt methods for their own context (Stahmer et al., 2005).
In short, it's the Iron Triangle of health care policy:  cost, access, quality.   One cannot maximize all three at the same time. There are always tradeoffs.

Image result for triangle cost access quality

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 jlang@saratogacountyny.gov.

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 scrane@autisticadvocacy.org.

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.

Summary
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.