I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
The Marvels of Media Awards at Museum of the Moving Image is the very first media awards ceremony, festival, and exhibition celebrating media-makers on the autism spectrum. The open call for the first edition of this annual program received 3,071 nominations from 117 countries. Twenty media works were chosen for awards in 12 categories. The winners will be celebrated on March 31, with the ribbon-cutting for an exhibition at MoMI featuring a selection of 18 works and an awards ceremony in the Redstone Theater. The Marvels of Media Exhibition is on view through May 1. Learn more here.
Free with RSVP, but space is limited. To request a ticket, please complete this form.
Award categories include: Animated Short, Collaborative Innovation, Digital Art, Documentary, Experimental Film, Mockumentary, Narrative Feature, Narrative Short, Series, Video Game, Student Animated Short, and Student Video Game.
Additionally there will be a series of events in relation to the awards ceremony, including an Access Rider Workshop for Artists with Disabilities led by artist-filmmaker April Lin 林 (RSVP here), a hands-on animation workshop combining digital and analog filmmaking led by media artist Carrie Hawks (RSVP here), a program of ReelAbilities Shorts, and a selection of Marvels of Media Films (RSVP here).
MoMI’s Marvels of Media Awards was developed by the Museum’s education department in partnership with Josh Sapan, a longtime member of MoMI’s Board of Trustees and the Executive Vice Chairman of AMC Networks. Through the Marvels of Media Awards, MoMI supports the creative endeavors of media-makers on the spectrum, of all ages and backgrounds. For more information about the project and to see a list of the advisory committee of artists, spokespeople on the autism spectrum, and experts in the field, as well as the final jury who selected the awardees, please visit this page.
Delays for Autism Diagnosis and Treatment Grew Even Longer During the Pandemic
Andy Miller and Jenny Gold, Kaiser Health News
Wylie James Prescott, 3, had to wait more than a year after his autism diagnosis to begin behavioral therapy, even though research shows early treatment of autism can be crucial for children’s long-term development.
His mother, Brandie Kurtz, said his therapy wasn’t approved through Georgia’s Medicaid program until recently, despite her continued requests. “I know insurance, so it’s even more frustrating,” said Kurtz, who works in a doctor’s office near her home in rural Wrens, Georgia.
Those frustrations are all too familiar to parents who have a child with autism, a complex lifelong disorder. And the pandemic has exacerbated the already difficult process of getting services.
This comes as public awareness of autism and research on it have grown and insurance coverage for treatment is more widespread. In February, Texas became the last state to cover a widely used autism therapy through Medicaid. And all states now have laws requiring private health plans to cover the therapy, applied behavior analysis.
Yet children from Georgia to California often wait months — and in many cases more than a year — to get a diagnosis and then receive specialized treatment services. Therapies that can cost $40,000 or more a year are especially out of reach for families who don’t have insurance or have high-deductible health plans. Children from minority communities and those who live in rural areas may face additional barriers to getting help.
“You would never allow a kid with cancer to experience these waits,” said Dr. Kristin Sohl, a pediatrician at University of Missouri Health Care and chair of the American Academy of Pediatrics’ Council on Children With Disabilities Autism Subcommittee.
During the early months of the covid-19 pandemic, many families canceled in-home services, fearing infection. Virtual therapy often didn’t seem to work, especially for nonverbal and younger children. With fewer clients, some providers laid off staff or shut down entirely.
And treatment services always face high turnover rates among the low-wage workers who do direct, in-home care for autism. But covid made the staffing problem worse. Companies now struggle to compete with rising wages in other sectors.
The Centers for Disease Control and Prevention estimates that autism affects 1 in 44 U.S. children, a higher prevalence rate than ever before. Autism symptoms can include communication difficulties and repetitive behaviors and can be accompanied by a range of developmental and psychiatric health conditions.
Early diagnosis of autism can make a difference, Sohl said. Symptoms of some kids who begin their therapy by age 2 or 3 can be greatly reduced.
Diagnoses are typically done by developmental-behavioral pediatricians, psychologists, psychiatrists, and neurologists, all of whom are in short supply. The shortage of developmental pediatricians is especially acute. Even though they do three more years of fellowship training than a general pediatrician does, developmental pediatricians typically earn less.
General pediatricians with training can also do assessments, but insurers often require a specialist’s diagnosis before paying for services, creating a bottleneck for families.
“If we solely rely on specialists, we’re setting ourselves up for failure because there aren’t enough of us. We need the insurance companies on board,” said Dr. Sharief Taraman, a pediatric neurologist and president of the Orange County, California, chapter of the American Academy of Pediatrics.
Even in a metro area, getting a child an appointment can take months. “We cannot get these families in fast enough,” said Dr. Alan Weintraub, a developmental pediatrician in suburban Atlanta. “It’s heartbreaking.”
Some parents pay cash for an evaluation with a private specialist, worsening disparities between kids whose parents can afford to skip the wait and those whose parents cannot.
Once a child has been diagnosed, many face an equal — or longer — wait to get autism therapies, including applied behavior analysis, a process that aims to improve social, communication, and learning skills. These sessions can take more than 20 hours a week and last more than a year. ABA techniques have some critics, but the American Academy of Pediatrics says that most evidence-based autism treatment models are based on ABA principles.
Accessing such treatment largely depends on insurance coverage — and for many families how well Medicaid pays. The Georgia Medicaid program reimburses well for ABA, Georgia doctors said, while Missouri’s pay is low, leading to a scarcity of options there, Sohl said.
In California, Medicaid reimbursement rates vary by county, and wait times for ABA range from about three to 12 months. In the rural northern reaches of the state, where few providers work, some families wait years.
During the first year of the pandemic, Claire Hise of Orange County was thrilled with the ABA therapist who worked with her son. But in January 2021, the therapist quit to go back to school. The company she was working with sent others. Hise had to train each new therapist to work with her son, a difficult process that always took more than a month. “It’s a special relationship, and each kid with autism is an individual,” Hise said. “It takes time.”
By then, they were out the door, replaced by another after no more than four to six weeks. Sometimes the family waited weeks for a replacement.
Hise tried switching to another company, but they all had a six-month waitlist. “He’s already so far behind,” Hise said. “It’s really a year I feel we’ve lost.”
“The impact on families having to wait for diagnosis or treatment can be devastating,” said Kristin Jacobson, founder of the Autism Deserves Equal Coverage Foundation, an advocacy group in California. “They know in their gut something is seriously not right and that there is help out there, and yet they are helpless to do anything about it.”
Araceli Barrientos helps run an autism support group in Atlanta for immigrant families, for whom language barriers can cause additional snags. It took her over a year to get her daughter, Lesly, diagnosed and two more years to secure further treatment.
Sabrina Oxford of Dawson, in rural southwestern Georgia, had to take her daughter Jamelyn more than 150 miles to the Marcus Autism Center in Atlanta to get her diagnosed. “You don’t have any resources around here,” Oxford said.
Dr. Michelle Zeanah, a behavioral pediatrician, draws families from 60 mostly rural counties to her clinic in Statesboro, Georgia. “There’s a massive shortage of people willing and able to do an autism diagnosis,” she said.
Getting insurance to pay for autism treatment can be another frustrating process for families. Therapy denials can be triggered by clerical errors or missed paperwork. Insurer approvals can be especially difficult for older children, who can be less likely to get treatment services than younger ones, said Dr. Donna Londino, a child and adolescent psychiatrist at Augusta University in Georgia.
Many children with autism also need speech, occupational, and physical therapy, all of which are generally easier to secure than behavioral therapy. But even then, Weintraub said, the insurers push back: “They really dictate how many services you can have. These families, literally, meet obstacles at every turn.”
David Allen, a spokesperson for AHIP, an insurance industry trade group formerly known as America’s Health Insurance Plans, said insurers often require prior authorization to ensure that autism services are “medically necessary and evidence-based” and that patients are treated by “providers with appropriate education and training in treating autism.”
Tracy-Ann Samuels of New York said she paid out-of-pocket for speech and occupational therapy for her son, Trey, now 15. Two years ago, after 18 months on a waiting list, he finally got ABA services covered by insurance.
“He’s doing so great,” she said. “My son was nonverbal. Now he’s talking my ear off.”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
This Article acts as a toolkit for members of the judiciary on defendants with Autism Spectrum Disorder (ASD), and specifically looks to equip judges with knowledge, evidence, and resources on recognizing and understanding symptoms of ASD in order to better identify and evaluate diagnosed defendants and their offending behavior. This will allow judges to have impactful and beneficial interactions with defendants, potentially make appropriate procedural and sentencing adjustments before and during the legal process, and better ensure more positive and appropriate legal outcomes for defendants with ASD. First, this Article discusses ways in which judges can identify defendants with ASD in court by recognizing and understanding both distinctive characteristics of offending and courtroom behavior that may be exhibited in cases involving defendants with ASD. Second, recognizing the limited previous research on judges’ understanding of ASD’s legal relevance, this Article provides judges guidance on three aspects of the legal process in which ASD may be forensically significant for defendants: fitness to stand trial, negating criminal elements necessary for criminal liability, and sentencing decisions. Finally, this Article puts forth recommendations for judges in order to improve the legal process for defendants with ASD.
From the article:
In order to tackle complicated cases involving more technical
knowledge, existing research across a variety of topical areas
increasingly suggests the need for judicial training and education in cases involving complex and scientific subject
matter that is likely outside of a judge’s wheelhouse.155 Judicial
training on ASD is no different, and should cover both legallyrelevant and clinical facets, such as symptomology, offending,
implications for sentencing, and best practices for judges and
other legal professionals.
Ultimately, judges must be equipped with appropriate
awareness, evidence, and resources to be able to recognize and
understand the symptoms of ASD and to better identify and
communicate with diagnosed defendants. Not only does this
allow for judges to make appropriate accommodations in the
legal process, but a more holistic understanding of ASD’s
forensic relevance to each aspect of the legal process will
maximize positive outcomes and legal consequences for
defendants with ASD in our criminal court system.
155. E.g., Colleen M. Berryessa, Judges’ Views on Evidence of Genetic Contributions to Mental
Disorders in Court, 27 J. FORENSIC PSYCHIATRY & PSYCH. 586 (2016); Colleen M.
Berryessa, Potential Impact of Research on Adolescent Development on Juvenile Judge DecisionMaking, 69 JUV. & FAM. CT. J. 19 (2018); Colleen M. Berryessa, Judicial Stereotyping Associated with
Genetic Essentialist Biases Toward Mental Disorders and Potential Negative Effects on Sentencing,
53 L. & SOC’Y REV. 202 (2018); Colleen M. Berryessa & Jillian Reeves, The Perceptions of Juvenile
Judges Regarding Adolescent Development in Evaluating Juvenile Competency, 110 J. CRIM. L. &
CRIMINOLOGY 550 (2020)
To ensure that children and youth with disabilities receive the services and support they need to thrive in school and graduate ready for college or career, the budget provides $16.3 billion for IDEA Grants to states, a $3.3 billion increase over the 2021 enacted level – the largest two-year increase ever for the program. The increased funds would support special education and related services for approximately 7.4 million students in grades Pre-K through 12. The budget also doubles funding to $932 million for IDEA Part C grants, which support early intervention services for infants and families with disabilities that have a proven record of improving academic and developmental outcomes. The increased funding would support states in implementing critical reforms to expand their enrollment of underserved children, including children of color, children from low-income families, and children living in rural areas. The budget also more than doubles funding to $250 million for IDEA Personnel Preparation grants to support a pipeline of special educators at a time when the majority of states are experiencing a shortage of special educators.
“So, some of the features we have really cater to those with special needs. And for all the rides, we have a sensory guide and rating scale. Our parade and show also have low sensory seating areas," said Tracy Spahr, Public Relations Leader of SeaWorld San Diego and Sesame Place.
They also have what they call "The Quiet Room" which is a space for families and children with special needs to pause, play a few games and just relax.
Sesame Place®, the nation’s only theme park based entirely on the award-winning show Sesame Street®, in conjunction with the International Board of Credentialing and Continuing Education Standards (IBCCES), today announced the completion of a staff-wide autism sensitivity and awareness training at the theme park. The completion designates Sesame Place as a Certified Autism Center (CAC) as distinguished by IBCCES, — the first theme park in the world to receive such a distinction. The certification aligns with National Autism Awareness Month and comes as the park readies for its 38TH season, opening on April 28, 2018.
Long before Russia launched its military assault on Ukraine, its citizens had been targeted for years by another Russian campaign — one designed to undermine confidence in Western vaccines and the governments offering them to their citizens.
The anti-vaccine messages were actively encouraged by President Vladimir Putin’s government, broadcast by Russian state television, and amplified on social media by Russian computer bots. The offensive was part of a larger effort to sow division within fledgling democracies and heighten suspicion of the West across Eastern Europe and the former Soviet republics.
In Ukraine, the seeds of vaccine skepticism fell on particularly fertile ground. Just 35% of residents are fully vaccinated against COVID-19, and only 1% more are partially vaccinated — among the lowest such rates in Europe, according to data from Oxford University. Childhood immunizations for diseases like measles and polio are among the continent’s lowest as well.
That gives public health officials reason for worry as more than 3.6 million Ukrainian refugees have poured into other countries and millions more are displaced within Ukraine, often hunkered down in crowded, frigid places without clean water or electricity.
Staff at a Weatherford elementary school restrained a 7-year-old on the autism spectrum multiple times per day within a 53-day period, according to a lawsuit from the student’s mother. In this screen grab from surveillance footage, four staff members assist in holding the child down because, according to his mother, the child bit his own arm. Surveillance footage K.S.
The allegations of abusive restraints at Weatherford are not an anomaly, advocates say. Advocates say children at Texas schools are excessively restrained by overworked or under-trained staff members, causing physical and mental trauma. Students with disabilities are disproportionately restrained compared to the general population of students, according to a 2020 study by Disability Rights Texas, and often the restraint is in response to behaviors that stem from the child’s disability. Texas laws often protect school staff from legal repercussions for restraining children, advocates and attorneys say, leaving parents with little recourse when they feel their child is being abused at school under the guise of safety restraints.
Tens of thousands more women tested themselves for autism last year with numbers seeking tests now far outstripping men, new data shows.
Statistics seen by The Independent show around 150,000 women took an online test verified by health professionals to see if they have autism last year, up from about 49,000 in 2020.
Health professionals said the increase was a consequence of women not being diagnosed with the neurodevelopmental disorder as children and teens due to autism wrongly being viewed as a male disorder.
Experts told The Independent autistic women and girls are routinely overlooked and neglected by health services due to them being more likely to conceal or internalise symptoms.
Data from Clinical Partners, one of the UK’s leading mental health care providers which works closely with the NHS, shows women made up 56 per cent of those using their autism tests last year. This is substantially higher than the 46 per cent of women testing themselves for autism in 2020.
The Medicaid program, a federal-state partnership administered by each state with oversight and funding contributions by the federal government, covers more people—including almost 40% of all children—than any other health insurance program in the United States. It is the primary means of coverage for specialized services needed by children with autism spectrum disorder, a range of developmental impairments including autism. This coverage is accomplished through legislation that permits the federal government to waive various statutory limits on state flexibility in benefit design. Research focusing primarily on children has found that Medicaid programs play an important role in supporting individuals on the autism spectrum in gaining and maintaining needed services and supporting their families and caregivers. However, there are important differences in the way states structure and implement their Medicaid programs that have not yet been fully cataloged. Moreover, research on enrollment and service use within the Medicaid program as these children age into adulthood is limited. Studies in this area are needed to ensure adequacy and equity in service availability and to guide states on policy and practice to meet the needs of these patients.
Neurodiversity Celebration Week is a worldwide initiative that challenges stereotypes and misconceptions about neurological differences. It aims to transform how neurodivergent individuals are perceived and supported by providing schools, universities, and organisations with the opportunity to recognise the many talents and advantages of being neurodivergent, while creating more inclusive and equitable cultures that celebrate differences and empower every individual.
“I founded Neurodiversity Celebration Week in 2018 because I wanted to change the way learning differences are perceived. As a teenager who is autistic and has ADHD, dyslexia, and dyspraxia, my experience has been that people often focus on the challenges of neurological diversity. I wanted to change the narrative and create a balanced view which focuses equally on our talents and strengths.” --Siena Castellon, Founder
Purpose of Review This review provides a highlight of existing evidence-based practices and community support systems that exist to enhance employment outcomes for autistic transition-age youth (TAY) and adults. An update is provided on the current status of these programs and the impact they are having on employment outcomes for this population.
Recent Findings Many programs exist that prove to be efficacious in improving employment outcomes. These programs can be categorized as vocational rehabilitation service system level interventions, provider and consumer level interventions targeting skills related to employment, and consumer level interventions delivered within community vocational rehabilitation or education settings. A more recent increase in programs is consistent with multiple research and policy calls for amplifed programming in this area.
Summary Despite these recent increases, there is still a need to further develop efective programming to support employment outcomes as the growing autistic population age into adulthood. Community-based research and practice should continue to be developed and tested.
From the article:
Although a number of EBPs exist and have been highlighted here, there continues to be a need for new program development for AS adults so that curriculums and programming are in place when the growing AS population age into adulthood and are prepared to ofer longer-term or more comprehensive services. This is consistent with multiple policy and research calls for (1) increased evidence-based interventions; (2) the development of treatment manuals to encourage replication of promising vocational support programs; (3) models for professional development to work with autistic adults in VR; and (4) recommendations to apply efcacious interventions with other populations to inform the advancement of employment approaches for autistic individuals [83•, 84, 85]. Additionally, recent government reports identifed supporting professional development for vocational service providers as a policy priority to improve competitive employment [48–87]. According to the 2020 Federal Youth Transition Plan, two main priorities for adult services research are (1) promoting work-based learning and (2) supporting professional development of service providers [88].
However, for an EBP to be disseminated successfully, the program must be feasible, cost-efective, and acceptable to the end-users, such as VR services, high schools, and vocational training centers [89]. Many of the EBPs described in this review had small sample sizes and often were not delivered within vocational service or pre-employment transition service educational settings. Additionally, many of the skills-based interventions limited their populations to AS individuals without a co-occurring intellectual disability and minimal racial/ethnic diversity, impacting the efectiveness of broad use. To this end, it is critical that future interventions be developed and tested in a way that attends to the needs of the population and service system from the onset, such as using CBPR methods, diverse populations, and testing directly in community settings. Few of the highlighted interventions used such methods. It is also important to be mindful of resources. The interventions that demonstrated positive outcomes with large samples all required signifcant resources such as intensive staf training, large amounts of service hours, and services extending beyond typical service system length which many VR systems are not in a position to ofer with budget and policy constraints. Future studies need to engage a more holistic and systemic approach to services research that includes utilizing dissemination and implementation frameworks, hybrid research designs, and an equity focus to ensure feasibility, accessibility, and scaling up for broad community use. In sum, there is a strong call for further research and funding of community-based, community-involved, EBP development and testing particularly to address autistic individual’s employment and life outcomes.
ABA is a primary intervention for autism spectrum disorder; it is delivered by a behavior analyst involving multiple sessions several times a week over months or years. In commercial health plans, it’s considered a mental health service and is protected through the Mental Health Parity and Addiction Equity Act, or MHPAEA, of 2008.
The 2022 Report on MHPAEA to Congress by the Departments of Labor, Health and Human Services, and of the Treasury found egregious violations of the parity law regarding ABA services for autistic individuals. This report was not a surprise to the autism community. But the often-overlooked tragedy is that this federal protection does not apply to military families receiving ABA. The ABA services provided by Tricare are exempt from the MHPAEA laws, and military families are paying the cost.
MHPAEA prohibits health policies placing high co-payments, separate deductibles, and stricter pre-authorization or medical necessity reviews compared to other medical treatments covered by the plan. The Department of Defense policies guiding Tricare oversight of ABA services have clear examples of MHPAEA violations.
Parents seeking ABA services for their children must undergo stress assessments every six months to receive authorization for ABA. This mandate for parent stress assessments does not apply to any other population within the military healthcare system. Now, imagine this exact policy applied to children receiving insulin for diabetes. Children would be denied medically necessary treatment due to the parent’s noncompliance. Mandating parent stress assessments in order to receive ABA is a violation of MHPAEA.
At Politico, Laura Kayali and Mark Scott report that "Western anti-vaccine groups and conspiracy theorists have shifted quickly from parroting falsehoods about the global pandemic to peddling misinformation about the war, often from Moscow's viewpoint." They continue:
The information war is playing out in real time across the European Union and the United States as well-organized and large online communities that had previously pushed back against COVID-19 restrictions are now framing Russia’s invasion as being between good-guy Moscow and Kyiv and its Western allies — now cast as New World Order oppressors — according to misinformation experts and fact-checking groups.
"The conspiracy sphere is an empty shell of sorts that aggregates as news unfolds," said Pauline Talagrand, who’s overseeing Agence France-Presse’s fact-checking work worldwide. "Whether it's vaccines or masks, there is always something that will trigger people who can be easily manipulated and are distrustful of traditional information."
“The problem with these recurring crises is that they contribute to the enlargement of these spheres and lead to the entrenchment of their narratives,” she added.
[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”
Another problem: identification methods do no good if cops don't know about them.
Sonia Turner said she will never forget the day her son, Jordan, got his license. She remembers him coming back from his test with a huge grin, telling her that he had passed.
"It was one of the happiest days of his life," said Turner, who lives in Windsor.
Turner said she was also happy, but she felt mixed emotions.
"Very, very nervous," said Turner. "Very scared, but I knew this was something he had to do."
Jordan Turner is on the autism spectrum. His mom said that he might communicate differently, especially in a potentially high stress situation like a traffic stop.
"Someone who doesn't know that he has autism might think that he's being disrespectful, or that he is being unruly, or he's resisting what they are telling him to do and that's not the case," said Turner.
But when Turner went to her local police department to get an envelope for her son, she had some trouble actually finding one.
"The sergeant that came to the window had no idea what I was talking about," said Turner. "If we have tools like the blue envelope put into place - why is it so difficult to get?"
In Belton, a family that knows the struggles of autism all too well, spent hours training both civilian and military police on how to be more effective if they are trying to help a family like theirs.
To avoid being drained powerpoint after powerpoint, the crucial mental health training course for law enforcement likes to get hands-on.
22-year-old Tres Jackson was diagnosed with Autism when he was 10 and now, he and his mother spend their spare time teaching criminal justice professionals how to interact with families like theirs.
”I help them with understanding why we do certain things like our stemming and why we do certain things. Or, why we respond to different things and how it may be perceived as something a little bit weird and that might be a little bit alienating,” said Tres Jackson.
It’s a passion that stems from his mother’s time as a prosecutor.
Nicole Jorwic is the Chief of Advocacy and Campaigns at Caring Across Generations. Before joining Caring Across, Jorwic was Senior Director of Public Policy and Senior Executive Officer of State Advocacy at The Arc of the United States. Before coming to DC to work on Federal Advocacy, she served as Senior Policy Advisor and Manager of the Employment First Initiative in Illinois. Prior to that appointment, Jorwic was the CEO/President of the Institute on Public Policy for People with Disabilities. She is also an accomplished special education attorney and an advocate for students with disabilities and their families. Jorwic is most importantly a sibling– her brother Chris is 32 and has autism.
Cathy Kanefsky’s personal experiences fuel her passion for serving mission-driven organizations. Kanefsky and her husband, Carl, have three sons. Thirty-year-old twins Sam and Adam were born four months early and live with significant physical and intellectual disabilities, including autism. Their 28-year-old son, Stephen, and his wife, Alexandra, are both special education teachers. After 14 years in leadership roles at the March of Dimes, Kanefsky built and led national field operations for Autism Speaks. Following five years as Chief Development Officer at A.I. duPont Hospital for Children, she now serves as the President and CEO of the Food Bank of Delaware. Her determination to help those seeking a better future is the foundation for enhancing job training and employment opportunities at the Food Bank – for all people – including those with intellectual disabilities.
M. Brent Leonhard is an Attorney in the Office of Legal Counsel for the Confederated Tribes of the Umatilla Indian Reservation. He has spent his career advocating for the advancement and expansion of the rights of tribal nations and citizens. In 2011, Leonhard was appointed to Attorney General Eric Holder’s Federal/Tribal Domestic Violence Taskforce. In 2015, he was appointed to the U.S. Sentencing Commission’s Tribal Issues Advisory Group. As a parent of an Autistic child, he is intimately familiar with the structural and systemic problems and frustrations those with intellectual or developmental disabilities face. Leonhard is intent on advocating for significant improvements to federal law and policy in this area.
Jordyn Zimmerman is a recent graduate from Boston College, where she earned her Masters of Education. Before graduate school, she interned at the National Disability Rights Network and completed her bachelor’s degree in Education Policy at Ohio University. As a nonspeaking autistic student who was denied access to effective augmentative communication until she was 18, Zimmerman has personal experience challenging the educational status quo, which is featured in the 2021 documentary, This Is Not About Me. Zimmerman also serves on the board of CommunicationFIRST and is passionate about ensuring every student is able to access effective communication and exercise their right to a truly inclusive education.
Nationally, the average DSP turnover
rate in 2020 increased by about one
percentage point to 43.6%. Meanwhile,
vacancy rates for full-time direct support
positions increased from 8.5% in 2019 to
12.3% in 2020—a roughly 45% increase.
As of 2018, 16 states and the District
of Columbia had closed their last
remaining large, state-run institutions.
Joining the ranks of states to have fully
deinstitutionalized since last time the
Case for Inclusion reported these data
are Montana and Tennessee.
1 in 5 (21.1%) people with IDD who received
employment or day supports were
participating in an integrated employment
service. Within the 33 states that report that
they collect data on the number of people
working, 19.3% of individuals participating
in integrated employment services were
working for pay.
There were 589,940 people on states’
waiting lists for home- and community-based services nationally. Nearly 4 in 5
(78%) of those waiting were concentrated
in just five states.
Because this key findings report cannot cover
every data point across all 80 measures
contained in the Case for Inclusion’s seven main
issue areas, we invite you to learn more and
explore the data at caseforinclusion.org
The report confirms that Texas is a hellhole for people with disabilities:
"Strikingly, more than 78% of people on states’ waiting lists live in the five states with the largest waiting lists:Texas (323,434), Ohio (68,644), Louisiana (27,509), Florida (21,864) and Illinois (19,354)."
"States that had the largest number of PRFs in operation wereTexas with 13, Ohio with eight and Illinois with seven. In terms of the number of people living in PRFs, Texas and Illinois had the dubious distinction of topping that list, with 2,969 and 1,664 residents, respectively, followed by New Jersey, with 1,325 people with IDD living in a PRF."
We reviewed studies of the prevalence of autism worldwide, considering the impact of geographic, ethnic, and socioeconomic factors on prevalence estimates. Approximately 1/100 children are diagnosed with autism spectrum disorder around the world. Prevalence estimates increased over time and varied greatly within and across sociodemographic groups. These findings reflect changes in the definition of autism and differences in the methodology and contexts of prevalence studies.
From the article:
In response to the need for an up-to-date global estimate of ASD prevalence, our review revealed a median prevalence of 65/10,000 as opposed to 62/10,000 in the previous review. In line with previous evidence, recent studies continue to report an increase in measured prevalence over time either at a country level and/or for specific subgroups, for example, the United States (Christensen et al., 2019; Jariwala-Parikh et al., 2019), South Korea (Hong et al., 2020), and Taiwan (Lai et al., 2012). Similarly, an increase in measured prevalence has been reported in later birth cohorts in France (van Bakel et al., 2015) and Australia (May et al., 2020; May et al., 2017; Randall et al., 2016).
Our findings also confirm that the substantial variability observed in the estimates can be, in part, accounted for by methodological and contextual differences among studies. First, surveillance systems, national registries, and other administrative databases offer larger and more representative samples relative to other study designs, but they are usually associated with lower sensitivity for case finding (Dodds et al., 2009), especially in areas with limited availability and/or access to service. In contrast, active case-finding procedures in cohort studies or population-based epidemiological surveys may result in more rigorous estimates, but their results are often confounded by multiple factors related to diverging strategies for case finding, evaluation, and confirmation used across studies. Second, methodological factors also interact with the broader community context where the level of awareness and capacity in health and education systems significantly impact autism identification, evaluation, and therefore prevalence estimates. Third, the evolving nature of the clinical definition of autism and its differentiation from overlapping conditions has continued to influence prevalence estimates.
I’ll also dispense with Posey’s denial that he is antivaccine, stated thusly, “To begin with, I am absolutely, resolutely pro-vaccine. Advancements in immunization have saved countless lives and have greatly benefited public health.” This is almost as risible as Robert F. Kennedy, Jr. characterizing himself as “fiercely pro-vaccine.” It’s nonsense. Posey is a man who has been on the side of the antivaccine fringe for quite some time. Heck, he even appeared at the antivaccine quackfest Autism One in 2013 as part of a “Congressional panel”! He even introduced legislation that’s gone nowhere requiring the CDC to do a retrospective “vaccinated vs. unvaccinated” study. As I put it, Posey appears to be vying to take over the title of most antivaccine legislator in the U.S. Congress since Dan Burton retired. Not surprisingly, he has received not-insubstantial donations from prominent members of the antivaccine movement, several with names that, if you typed them into the search box of this blog, would bring up multiple posts packed with pristine Insolence. Whenever someone who is a associated with the antivaccine movement and has demonstrated antivaccine proclivities through his actions so piously denies being antivaccine, a good rule of thumb is that he is almost certainly antivaccine, and in this case Posey is just that.
