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
Accurate estimation of annual changes in autism spectrum disorders (ASD) prevalence is critical for planning the expansion of diagnostic, education, and intervention services at an adequate rate. Previous studies from Israel have reported that ASD prevalence among 8-year-old children has increased from estimates of 0.3% in 2008 to 0.65% in 2015 and 1.3% in 2018. Here, we analyzed data acquired from the National Insurance Institute of Israeli (NII), a governmental organization that approves and monitors all ASD children who receive welfare services in Israel, and Clalit Health Services (CHS), the largest Health Maintenance Organization in Israel that provides health services to ~52% of the population. Data from both sources included annual data files from 2017 to 2021 containing the number of ASD cases per year of birth for 1–17-year-old children. This allowed us to estimate annual ASD prevalence among 3.5 million children born between 2000 and 2020 in Israel. Both data sources revealed a nearly two-fold increase in ASD prevalence among 1–17-year-old children from 2017 to 2021. Estimated prevalence rates differed across age groups with 2–3-year-old (day-care) children increasing from 0.27% to 1.19% (>4 fold change), 4–6-year-old (pre-school) children increasing from 0.8% to 1.83%, and 8-year-old children increasing from 0.82% to 1.56% in NII data. These results demonstrate that autism prevalence continues to increase in Israel with a shift towards diagnosis at earlier ages. These findings highlight the challenge facing health and education service providers in meeting the needs of a rapidly growing autism population.
But there are some really creative solutions in terms of trying to provide supports to career changers or people who work in schools already. Some of these are called grow your own programs, where they might take special education paraprofessionals and provide them with the education that they need to be certified. And these are individuals who've already been working with students with disabilities and already have kind of a commitment to that school community.
COVID-19 vaccination during pregnancy benefits both mother and baby. Side effects are generally mild, and studies don’t show negative effects on the baby. A criticized study that gave COVID-19 vaccines to pregnant rats doesn’t show that vaccines cause autism or that people shouldn’t get COVID-19 vaccines, contrary to claims.
Nevertheless, a notorious crackpot keeps pushing the myth:
Commentator Candace Owens, who has a history of spreading misinformation, shared a post about the study on X, the platform formerly known as Twitter, saying it supported long-standing, debunked claims about vaccines and autism. “That’s because vaccines and autism have always been linked, which affected mothers have been trying to tell the general public for decades,” she said. Postsabout the studyhavecontinued to spread
Question Is previous exposure to maternal COVID-19 vaccination in utero associated with increased risk for neurodevelopmental impairment in 12- and 18-month-old infants?
Findings In this cohort study including 2261 and 1940 infants aged 12 and 18 months, respectively, in utero exposure to COVID-19 vaccination was not associated with abnormal neurodevelopmental scores on the Ages and Stages Questionnaire, third edition, at 12 or 18 months of life.
Meaning Results suggest that maternal vaccination against COVID-19 during pregnancy was safe from the perspective of offspring neurodevelopment up to age 18 months.
The current study sought to understand how viewing a
video clip from a television show featuring an autistic
character would impact the stereotypes and attitudes that
neurotypical college students have about autism. College
student participants viewed a scene depicting an autistic
character who either speaks about their experiences with
ASD (i.e., informational condition), behaves in a relatable
manner (i.e., relatable condition), or engages in stereotypical autistic behaviors (i.e., stereotypical condition). Results
indicated that participants endorsed fewer stereotypes about
autism and autistic people in the informational clip condition
than in the relatable clip. This finding supports previous work
demonstrating that learning about the lived experiences of a
media character with a disability reduced stereotypes (Gaertner et al., 1993) and that a show explaining an autistic character’s behavior increased participants’ likelihood of identifying false information about ASD compared to those who
viewed an educational presentation (Stern & Barnes, 2019).
In the clip in our study, the main character described how
she sees the world differently from neurotypical people. Further, the effect of the video clip condition on the endorsement of autism stereotypes was mediated by liking the autistic character, whom participants liked more in the informational than the relatable condition. This finding is consistent with
researchers’ adaption of Allport’s (1954) contact theory, in
which intergroup contact, even vicarious contact, can reduce
stereotypes (e.g., Crisp & Turner, 2012) and lead to attitude
change towards autistic individuals (Dickter & Burk, 2021).
Our study identifies one of the mechanisms responsible for
this relationship. Together, our findings suggest that viewing
a short video in which a character describes their experiences with autism can be a potential intervention that colleges may use to reduce stereotypes about autism and autistic
people but underscore the importance of ensuring that this
character is likable
Not in this article, but here is an example of a video in which an autistic person (my son) describes his experiences.
A Dec. 31, 2023, Instagram post (direct link, archive link) shows a video of a woman crossing out the word "don't" in the phrase "vaccines don't cause autism" so the message reads "vaccines cause autism."
In support of this claim, the post's caption makes a calculation based on a package insert listing the possible amount of aluminum in a hepatitis B vaccine and the average weight of a newborn.
...
There is a large body of research supporting the safety of the way aluminum is used in vaccines. A 2011 paper showed that infants following the recommended vaccination schedule have “significantly less" aluminum exposure than limits deemed safe by the Centers for Disease Control and Prevention. A 2015 paper endorsed identifying and developing new adjuvants beyond aluminum salts, while still recognizing they have been demonstrated safe. And a 2018 paper showed that aluminum levels in children’s hair, a measure of how much is in the body, are not affected by whether they are vaccinated.
The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.
Today at the Kern Regional Center, Congressman David G. Valadao (CA-22) announced the introduction of a bipartisan bill to remove the marriage penalty for Supplemental Security Income (SSI) for individuals with disabilities. Currently, benefits for a married couple who both receive SSI and have no other income amount to 25% less than their non-married counterparts. H.R. 7055, The Eliminating the Marriage Penalty in SSI Act (EMPSA) seeks to address this shortfall and ensure individuals with disabilities are not penalized by the federal government for getting married.
“Individuals with intellectual disabilities shouldn’t be punished for getting married, but sadly that’s exactly what’s happening with their reduction in SSI benefits,” said Congressman Valadao. “I introduced the Eliminating the Marriage Penalty in SSI Act to ensure married adults with intellectual disabilities have the resources they need to meet their basic needs and lead independent lives. Thank you to one of my constituents, Kelly, who brought this issue to my team’s attention on behalf of her daughter.”
“No one should be penalized for getting married, especially when it comes to accessing the critical benefits that so many people in our community rely on,” said Congresswoman Susie Lee. “I’m fighting in Congress to make sure families have all the resources and opportunities they need to succeed and live their lives to the fullest. The Eliminating the Marriage Penalty in SSI Act is a much-needed step toward ensuring married adults with diagnosed intellectual and developmental disabilities get every dollar of the Supplemental Security Income they deserve.”
Rep. Valadao announced the bill during a tour of Kern Regional Center (KRC), a private, nonprofit regional center contracted by the State of California through the Department of Developmental Services to coordinate community-based services and support for individuals with developmental disabilities and their families. This visit allowed Rep. Valadao to hear directly from a couple who would be impacted by this legislation, as well as learn more about the important work being done by KRC to help individuals with developmental disabilities achieve an independent and productive life.
"Having Rep. Valadao and his staff visit KRC to see what we do at the regional center and hear firsthand from people we serve who are married was a great opportunity for us all to learn more about how we can continue advocating for this important legislation," said KRC Executive Director Dr. Michi Gates.
Rep. Valadao was joined during the tour by KRC's Executive Director Dr. Michi Gates, Board President Tracey Mensch, Associate Director for Intake Kristine Khuu, Assistant Director of Early Childhood Services Lulu Cavillo, Director of Client Services Celia Pinal, Director of Community Services Enrique Roman, and Chief Financial Officer Tom Wolfram. During his visit, Rep. Valadao sat down with Kelly Kulzer-Reyes, a parent whose message to Rep. Valadao's office inspired the legislation, as well as Micaela and Diego Cruz, a married couple who have been impacted by the SSI marriage penalty.
The Eliminating the Marriage Penalty in SSI Act is endorsed by Autism Speaks, Autism Society of America, Muscular Dystrophy Association, National Down Syndrome Congress, National Down Syndrome Society, and Gigi’s Playhouse Down Syndrome Achievement Centers.
"We extend our heartfelt gratitude to all the Representatives and offices involved for their invaluable commitment to allowing individuals with IDD to marry without being penalized. At the National Down Syndrome Congress (NDSC), we advocate for equal rights and opportunities for people with Down syndrome, including their right to decide who they want to date and possibly marry. The EMPSA bill will allow an SSI recipient with IDD to marry another SSI beneficiary without fear of loss or reduction in critical benefits,” said Stephanie Smith Lee, Interim Executive Director, National Down Syndrome Congress.
“The current Supplemental Security Income (SSI) program asset limits, which have not been raised in 40 years, are a major disincentive for people with Down syndrome who wish to get married,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation (GLOBAL). “We are grateful for Congressman Valadao’s leadership in advancing the bipartisan Eliminating the Marriage Penalty in SSI Act, which will allow all people with intellectual disabilities to marry without being financially penalized. The ability to get married is so important for mental health and is a basic human and civil right.
Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children’s rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents’ knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.
From the article:
Given this study’s findings, peer advocacy is an important intermediary step in bridging the gap between individual and systemic advocacy. Thus, more research about peer advocacy as a distinct construct and its relationship with individual and systemic advocacy is needed.
To that end, it is important to explore the nature of peer advocacy. In the United States, there has been an increasing emphasis on family navigator programs (e.g. Broder-Fingert et al., 2020; Burke et al., 2016; Feinberg et al., 2016; Magaña et al., 2017). Ultimately, the goal of these programs is to help access services. While family navigator programs are also becoming increasingly common, little is known about the attributes of the navigator that makes navigation effective. For example, some navigators are trained social workers in hospital settings (Feinberg et al., 2016) while other navigators are parents of children with disabilities (Magaña et al., 2017). Our study’s findings suggest that parents who are more empowered are likely to advocate for their peers (i.e. other families of individuals with disabilities). Thus, while not directly examining differences between navigators who are (and are not) family members of individuals with disabilities, our study suggests that peer advocacy may come more naturally to navigators with lived experiences as parents of individuals with disabilities. Furthermore, our study signals the importance of peer advocates especially when considering the need for systemic reform.
Recent measles outbreaks in several northeastern states in the U.S., as well as across the U.K., have caused some alarm among health officials and renewed controversy over the level of vaccination rates.
In Europe, cases have risen drastically in the last year. The World Health Organization (WHO) reportedTrusted Source that cases have spiked in Europe last year. The WHO found that cases rose to over 42,000 in the continent in 2023 compared to just 921 in all of 2022, reported the BBC.
Cases of measles have been reported in Delaware, Pennsylvania, and New Jersey, with other reports of infected individuals in Washington state; another person with measles reportedly traveled through Dulles International Airport and Ronald Reagan Washington National Airport on Jan. 3 and 4.
...
The combination of reduced vaccine rates from the early pandemic years and a backlash against vaccines in general by some parents are likely contributors to this uptick in measles, which had been essentially eliminated from the general U.S. population for years. In Mississippi, for example, nearly 99% of kindergartners received both MMR in 2021-22 — the highest rate in the nation. But a U.S. District Court judge in 2023 allowed parents there to file for religious exemptions to state-mandated vaccines, and it appears that similar trends have occurred in other states
A new program in Miami-Dade County aims to save lives through a simple decal. The initiative will alert first responders to potential interactions with residents living with autism.
Approved last week by the Miami Dade County Commission, the decal is meant to be placed at the front door of a home or a car window to notify police officers and firefighters of a potential interaction with a resident living with autism.
The decal reads, “Occupant with autism, may not respond to verbal commands.”
Dr. Diane Adreon with the University of Miami’s Center for Autism and Related Disabilities (CARD) says the decals can aid in the training of law enforcement officers.
“There’s so many nuances that people could really not know how to react, and they could take their behaviors the wrong way,” said Dr. Adreon. “It gives people with autism or family members an opportunity to safely disclose the disability in a circumstance where they may be interacting with law enforcement.”
When it launches in April, Miami-Dade residents will be able to pick up the free decal from their local Miami-Dade Police station.
District 7 Commissioner Raquel Regalado says there are plans for the county to partner with agencies in other municipalities, to expand the program. She also believes this program will free up county resources.
68% of family caregivers reported that the direct support workforce crisis had negatively
affected the supports that their family members received.
81% of family caregivers provided more supports due to decreased available supports
and services.
35% reported that their family member is on
a waiting list for government-funded supports and services.
73% paid more out-of-pocket, and 37%
report difficulty paying for supports and
services.
Participants reported that their family members are experiencing various negative
effects from the decreased availability of
supports, including access to therapies, having work hours cut, losing their job, or having
schools/daycares cut hours or close.
Family caregivers reported that the negative
effects related to their caregiving duties have
increased since the 2017 FINDS Survey.
The number of caregivers who reported feeling very or extremely stressed has increased
from 48% in 2017 to 54% in 2023.
Nine in ten caregivers reported some impact
on their employment related to their caregiving responsibilities.
41% reported leaving employment to provide
supports to their family member.
Half of all participants (50%) agreed or
strongly agreed that they were under financial strain due to providing supports.
Most people receiving supports were between the ages of 22 and
64 (59%), 39% were aged 21 and under, and 2%
were 65 and older. Six in ten (59%) were reported
to have an intellectual disability, 50% were reported to have autism spectrum disorder (ASD), 40%
had a communication delay or speech disorder,
36% had any developmental delay, and 36% had a
mental or behavioral health diagnosis. Fewer than
a third were reported to have a variety of developmental disabilities
Autistic adults experience difficulties finding and keeping employment. However, research investigating reasons that might explain this difficulty produce mixed results. We gave a survey to 2449 autistic adults and used a statistic method to group them based on their employment status over 8 years. We identified four employment groups that best captured the experiences of autistic adults; this included a group that experienced stable unemployment, a group that experienced stable employment, a group that had high employment that reduced over time, and a group whose employment increased over the 8 years. Further analysis showed that those with fewer autistic traits, younger age, male gender, higher education, later diagnosis age and no co-occurring conditions were more likely to have stable employment. People whose employment changed over time were more likely to have a higher level of education than the stable unemployment group, and those in the increasing employment group were younger age and had no co-occurring conditions. These findings help us better understand that not all autistic adults’ experiences of employment are the same, which helps focus where employment programmes and support may be most needed, for example, people who identify as women or have a co-occurring condition.
From the article:
The participant’s highest level of educational attainment was the most consistent indicator differentiating individuals with some employment from the unemployed class. However, the likelihood of being in the employed class and the increasing employment class were higher than reducing employment class. Consistent with research in other autism studies (Alverson & Yamamoto, 2017; Chiang et al., 2013; Ohl et al., 2017), and disability populations (Saunders et al., 2006), our findings with an autistic sample support a positive association between gaining employment and one’s education level. It is important to note, however, that autistic people experience high dropout rates and challenges in higher education (Flower, Richdale, & Lawson, 2021; Nuske et al., 2019), with lower rates of university and vocational education completion than the general population and other disability groups (Australian Bureau of Statistics, 2019). This might suggest that factors associated with challenges attending or completing post-secondary education might also underpin challenges gaining employment. Our findings highlight the importance of education in gaining and maintaining stable employment and present a potential avenue and venue for supporting transition age autistic people.
Misinformation, disinformation, and conspiracy theories about vaccines are key drivers of vaccine hesitancy. A repeated false claim about COVID-19 vaccines is that the vaccines cause female infertility. Dating back decades, various conspiracy theories have linked vaccination programs with infertility and thus harmed vaccination programs in Africa, Asia, and Central America, particularly against polio and tetanus. In the United States, Europe, and Australia, human papilloma virus (HPV) vaccines have been falsely blamed for infertility and primary ovarian insufficiency (POI). After distribution of COVID-19 vaccines began in December 2020, almost immediately there arose conspiracy theories claiming that these vaccines cause menstrual irregularities, miscarriages, and infertility, promoted by noted antivaccine activists Robert F. Kennedy, Jr. and Andrew Wakefield among others. Here we will explore the history of this antivaccine narrative, how it has been promulgated in the past and repurposed to COVID-19 vaccines, and strategies to counter it.
From the article:
In 2022, RFK Jr.’s antivaccine group Children’s Health Defense released a documentary entitled “Infertility: A Diabolical Agenda” [52], with Kennedy serving as executive producer. Co-producers included Mary Holland, a lawyer who has long promoted the false claims that vaccines cause autism and that HPV vaccines cause infertility, and Andrew Wakefield, the UK physician who has been one of the most famous antivaccine activists in the world since he published his now-retracted case series in The Lancet in 1998 that claimed to find an association between the MMR vaccine and autistic enterocolitis, arguably the main spark behind the late 20th century resurgence of antivaccine sentiment. Infertility has been characterized as a “docuganda”; i.e., a documentary propaganda [53], a genre which includes prior anti-vaccine films “The Greater Good” and Andrew Wakefield’s previous directorial effort, the 2016 film “VAXXED: From Cover-Up to Catastrophe”.
Infertility: A Diabolical Agenda is is largely an updated rehash of a 1990s-era disinformation campaign that spread fear about a push to prevent neonatal tetanus in developing countries by vaccinating young women, and one of the earliest antivaccine campaigns to use the Internet as a powerful tool to spread such fear. As part of this fear-based campaign, antivaccine advocates conflated ongoing clinical trials of an experimental antifertility vaccine, which conjugated a subunit of human chorionic gonadotrophin (hCG) hormone with diphtheria or tetanus toxoid proteins, to ongoing tetanus immunization programs led by the World Health Organization [54]. Though there was no connection between the immunization program and the clinical trial, the confusion between the two led to distrust of the tetanus vaccines. Once such distrust spread, tetanus vaccines were tested for the presence of hCG. However, ordinary pregnancy tests were used, which were not appropriate to test for this hormone within vaccine vials, leading to false positive results and further misrepresentation of the outcome by groups opposed to the tetanus vaccine campaign. Vaccines tested by reputable laboratories did not find presence of the hormone [54].
52. A. Wakefield Infertility: A Diabolical Agenda Children’s Health Defense Films, United States (2022) Google Scholar
54. J. Milstien, P.D. Griffin, J.-W. Lee Damage to Immunization Programmes from Misinformation on Contraceptive Vaccines Reprod Health Matters, 6 (1995), pp. 24-28
An Illinois family said they are still reeling weeks after their 14-year-old son who has autism was tased by police in what they contend was a case of mistaken identity.
The family told ABC Chicago station WLS that the teen -- Avarius Thompson -- suffered injuries including a fractured hip during an encounter with Dolton police on the morning of Nov. 20, 2023.
According to the Dolton Police Department's incident report, Dolton police were assisting police in the nearby village of Riverdale in the search for four Black males who had fled from a crashed, stolen vehicle -- two of whom were allegedly carrying rifles and a handgun.
‘I’m Not Safe Here’: Schools Ignore Federal Rules on Restraint and Seclusion
Fred Clasen-Kelly
Photos show blood splattered across a small bare-walled room in a North Carolina school where a second grader repeatedly punched himself in the face in the fall of 2019, according to the child’s mom.
His mother, Michelle Staten, said her son, who has autism and other conditions, reacted as many children with disabilities would when he was confined to the seclusion room at Buckhorn Creek Elementary.
“I still feel a lot of guilt about it as a parent,” said Staten, who sent the photos to the federal government in a 2022 complaint letter. “My child was traumatized.”
Documents show that restraint and seclusion were part of the special education plan the Wake County Public School System designed for Staten’s son. Starting when he was in kindergarten in 2017, Staten said, her son was repeatedly restrained or forced to stay alone in a seclusion room.
Federal law requires school districts like Wake County to tell the U.S. Department of Education every time they physically restrain or seclude a student.
But the district, one of the largest in the nation, with nearly 160,000 children and more than 190 schools, reported for nearly a decade, starting in 2011, that it had zero incidents of restraint or seclusion, according to federal data.
Staten said she was alarmed to learn about the district’s reporting practices, and in March 2022 she sent a complaint letter to the Department of Education’s Office for Civil Rights. When the district set up her son’s special education plan, she wrote, “they said things like ‘it’s for his safety and the safety of others.’”
Further, she wrote, in his district files, “nowhere in the record was there documentation of the restraints and seclusion.”
The practice is “used and is used at often very high rates in ways that are quite damaging to students,” said Catherine Lhamon, assistant secretary for the Office for Civil Rights.
The Department of Education says it is meeting with schools that underreport cases of restraint and seclusion, tactics used disproportionately on students with disabilities and children of color like Staten’s son.
Lhamon called the practices “a life-or-death topic” and noted the importance of collecting accurate federal data. Secretary of Education Miguel Cardona announced new guidance to schools in 2022, saying that, “too often, students with disabilities face harsh and exclusionary disciplinary action.”
‘Children With Bruises’
For more than a decade, school nurses, pediatricians, lawmakers, and others have warned that restraint and seclusion can cause long-lasting trauma and escalate negative behaviors. In the worst cases, children have reportedly died or suffered serious injury.
“In an ideal world, it should be banned,” said Stacey Gahagan, an attorney and civil rights expert who has successfully represented families in seclusion and restraint cases. The tactics are “being used in ways that are inappropriate. I’m seeing parents with pictures of children with bruises and children afraid to go to school.”
No federal law prohibits restraint and seclusion, leaving a patchwork of practices across states and school districts with little oversight and accountability, according to parents and advocates for people with disabilities.
Tens of thousands of restraint and seclusion cases are reported to the federal government in any given year. But those are likely undercounts, say parents and advocates for students, because the system relies on school staff and administrators to self-report. It’s a failing even the Department of Education acknowledges.
“Sometimes school communities are making a deliberate choice not to record,” Lhamon said.
The Wake County Public School System declined to answer questions about Staten’s case for this article, citing student privacy law.
A 2022 report to Congress found North Carolina schools handed lengthy suspensions or expulsions to students with disabilities at the highest rate in the nation.
The district in 2022 submitted revised restraint and seclusion data to the federal government dating to the 2015-16 school year, said Matt Dees, a spokesperson for the Wake County Public School System, where Staten’s son attended school. In a written statement, he said federal reporting rules had been confusing. “There are different guidelines for state and federal reporting, which has contributed to issues with the reporting data,” Dees said.
But parents and advocates for children with disabilities don’t buy that reasoning. “That explanation would be plausible if they reported any” cases, Gahagan said. “But they reported zero for years in the largest school district in our state.”
Hannah Russell, who is part of a network of parents and advocates in North Carolina that helps families navigate the system, said even when parents present pictures of their injured children, the school systems will say “it didn’t happen.”
In North Carolina, 91% of districts reported zero incidents of restraint and seclusion during the 2015-16 academic year, the second-highest percentage in the nation after Hawaii, a federal report found.
“This was a problem before covid,” said Russell, a former special education teacher who said one of her own children with special needs was restrained and secluded in school. “It is an astronomical problem now.”
North Carolina’s Department of Public Instruction, which oversees public schools statewide, did not make officials available for interviews and did not answer written questions.
In an email, spokesperson Jeanie McDowell said only that schools receive training on restraint and seclusion reporting requirements.
Educators are generally allowed to use restraint and seclusion to protect students and others from imminent threats to safety. But critics point to cases in which children have died or suffered post-traumatic stress disorder and other injuries for minor transgressions such as failing to stay seated or being “uncooperative.”
Zero Incidents Reported
In 2019, the Government Accountability Office, which conducts research for Congress, said some school systems almost never tell the federal government about the use of restraint and seclusion. About 70% of U.S. school districts report zero incidents.
The Department of Education’s “quality control processes for data it collects from public school districts on incidents of restraint and seclusion are largely ineffective or do not exist,” a 2020 GAO report said.
Lhamon said her office is conducting investigations across the country and asking districts to correct inaccurate data. The Department of Education wants school districts to voluntarily comply with federal civil rights law protecting students with disabilities. If they don’t, officials can terminate federal financial assistance to districts or refer cases to the Department of Justice.
The Wake County Public School System settled a lawsuit last year after the district did not report any use of restraint or seclusion in the 2017-18 school year, even though a student was secluded or restrained and witnessed the practices used with other children, according to Gahagan, who represented the student’s family.
As part of the settlement, the district agreed to notify parents by the end of each school day if their child had been restrained or secluded that day.
Gahagan said transparency would increase in Wake County but that problems persist across the country. Schools sometimes keep seclusion incidents hidden from parents by calling them “timeouts” or other euphemisms, Gahagan said.
“For most parents a ‘timeout’ doesn’t mean being put in a closet,” Gahagan said. “What is the recourse for a parent? There are not a lot of checks and balances. There is not enough accountability.”
Still, Gahagan, a former teacher, expressed sympathy for educators. Schools lack money for counselors and training that would help teachers, principals, and other staff learn de-escalation techniques, which could reduce reliance on physical interventions, she said.
Jessica Ryan said that in New York City, her son, who has autism, received counseling, occupational therapy, and a classroom with a standard education teacher and a special education teacher.
But when Ryan’s family moved last year to Wake County, home to more than 1 million people and part of the famed Research Triangle region, she was told he didn’t qualify for any of those services in the district, she said. Soon, her son started getting in trouble at school. He skipped classes or was written up for disruptive behavior.
Then in March, she said, her husband got a phone call from their son, who whispered, “Come get me. I’m not safe here.”
After the 9-year-old allegedly kicked a foam soccer ball and hit a school employee, he was physically restrained by two male school staffers, according to Ryan. The incident left the boy with a bloody nose and bruises on his leg, spine, and thigh, the medical records say.
The Wake County school district did not respond to questions about the events described in the documents.
After the incident, Ryan said, her son refused to go to school. He missed the remainder of fourth grade.
“It is disgusting,” said Ryan, 39, who said she was a special education teacher in Wake County schools until she resigned in June. “Our kids are being abused.”
The district did not record the incident in PowerSchool, a software system that alerts parents to grades, test scores, attendance, and discipline, Ryan said.
In August, Ryan’s son began classes at another Wake County school. By late October, school and medical records say, he was restrained or secluded twice in less than two months.
Guy Stephens, founder and executive director of the Alliance Against Seclusion and Restraint, a nonprofit advocacy group based in Maryland, said he founded the group more than four years ago after he learned his own son was afraid to go to school because he had been repeatedly restrained and secluded.
Stephens said some children subjected to the practice may start to act out violently at home, harm themselves, or fall into severe depression — impacts so adverse, he said, that they are a common part of the “school-to-prison pipeline.”
“When you go hands-on, you are putting more people in danger,” Stephens said. “These lives are being set on a path to ruin.”
In May, federal lawmakers proposed the Keeping All Students Safe Act, a bill that would make it illegal for schools receiving federal taxpayer money to seclude children or use restraint techniques that restrict breathing. Sen. Chris Murphy, a Connecticut Democrat, and other supporters have said a federal law is needed, in part, because some districts have intentionally misreported numbers of restraints and seclusions.
Advocates acknowledge Congress is unlikely to pass the bill anytime soon.
School administrators, including AASA, a national association of school superintendents, have historically opposed similar legislation, saying that restraint and seclusion are sometimes needed to protect students and staff in dangerous situations.
AASA spokesperson James Minichello declined comment for this article.
Staten said she begged officials at Buckhorn Creek Elementary and the district to remove restraint and seclusion from her child’s special education plan, documents show. Officials denied the request.
“I feel like they were gaslighting me into accepting restraint and seclusion,” Staten said. “It was manipulative.”
Staten and her husband now home-school their son. She said he no longer has emotional outbursts like he did when he was in public school, because he feels safe.
“It’s like a whole new kid,” Staten said. “It sometimes feels like that was all a bad dream.”
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