According to a 2008 study performed in Denmark, the mortality rate for individuals with autism is twice that of the general population. A more recent Swedish study found the rate 5.6 fold higher than expected. Whichever is the true number, the message is clear: far more disabled die young. Among the more common causes of death such as seizure, accident and circulatory disease, asphyxiation is included among unnatural causes.
Michael Carey’s thirteen year old son was one of the victims of “increased mortality”—a euphemism for the violent death Jonathan Carey suffered at the hands of staff at the O.D. Heck state residential care facility in New York. Since Jonathan’s death in 2007, Michael Carrey has lobbied for improvements within the state’s dangerous disability system, including calling for video and audio surveillance of all special needs classrooms, on transportation, in group and residential homes.
What happened in place of the changes Carey battled for appears to be worse than nothing. The bill signed by Governor Cuomo in June created yet another go-between agency to divert calls and reports of institutional abuse away from 911 and law enforcement. The bill also gives power to the governor to appoint institutional officials and makes the prosecution of accused care workers and administrators more difficult than it already was by raising the bar from “credible evidence” to “preponderance of evidence.” Carey believes the bill was clearly intended to prevent reports of institutional abuse from reaching the justice system.
Listen to Carey discussing the bill:
Even after Jonathan’s death was covered in The New York Times, the abuse at the center continued according to care worker Mary Maioriello, who provided the Times with recordings of O.D. Heck administrators taken secretly during meetings in which these administrators fail to show much interest in or stop the assaults and systematic degradation of residents which Maioriello. After the tapes were released, the administrators were replaced.
The need for surveillance is often demonstrated by surveillance.
Educators and caretakers like Maioriello have argued that they want cameras in classrooms and buses for the protection of vulnerable children and adults as well as protection for staff and support for whistleblowers. School bus driver Yvonne Mack Colclough forced a district to investigate staff assault on a child with autism when she demanded that the district review the bus video recording. She felt the school still sanctioned her for putting children first, though they could not charge her with making false reports, which has happened to other whistleblowers; and the culprits were arrested, which is quite rare in school abuse cases.
One ironic argument against cameras in schools and buses is that “educators put up with a lot from kids”—indeed they do. Just ask bus monitor Karen Klein—a beacon of clemency in the face of really vile verbal abuse by typical students. Her case demonstrates the upside for staff of having audio and video, since those who saw the tape raised over half a million dollars for her.
What’s potentially objectionable in the Klein coverage is that one of the bullies is visible in the Youtube recording. As rotten as his behavior was, he’s still a minor and should be privacy protected in the media. I’m only sharing it because it’s already been widely shared but it’s regrettable that the child’s face wasn’t blurred or pixelated. Mainstream media tends to be legally cautious about obscuring identity for minors, particularly those who could be committing a crime, but obviously the practice needs to be extended to social media as well.
Privacy is the central sticking point in the camera debate in general. On the one hand, government employees have limited expectations of privacy while on the job and, if families had equal access, the cameras would be turned on “Big Brother” in effect. This would also be true of most private disability schools which take district tuition for outplacement. On the other hand, there are very legitimate arguments in defense of civil liberties that cameras in schools could have a stultifying effect on student individuality.
In a discussion of the Surveillance State, Salon blogger Glen Greenwald criticized the policy of placing cameras on school buses because of the Pavlovian effect it would have on children. In his argument, Greenwald discussed only minor peer bullying, not the more extreme types of incident which frequently effect disabled children (HERE, HERE, HERE, HERE, HERE, HERE, HERE, HERE, HERE, HERE). Greenwald also doesn’t mention the rate of sexual abuse of children by adults in schools, which reportedly impacts somewhere between 3.7% and 10% of students under 18.
In fact, California may eventually have mandated surveillance in schools due to reports of rampant sexual abuse of children, which is apparently not limited to Penn State or the Catholic Church. Tim Stanley of The Telegraph wrote:
Certainly, paedophile activities are not limited to the American Catholic Church. A recent report by the US Department of Education revealed that a child is more than 100 times more likely to be sexually abused by a public school teacher than by a priest. To quote: “a study by the US Conference of Catholic Bishops concluded that 10,667 young people were sexually mistreated by priests between 1950 and 2002. In contrast, [it] extrapolates from a national survey conducted for the American Association of University Women Educational Foundation in 2000 that roughly 290,000 students experienced some sort of physical sexual abuse by a public school employee between 1991 and 2000.” Ergo, Sandusky’s activities are part of a wider story of criminal infiltration of our national institutions.
And who will stop it? Whistleblowers are not alone in encountering bureaucratic retaliation. School retaliation against parents attempting to advocate against abuse of disabled students or denial of services has risen with the rate of disability.
Retaliation can be defined as “using official resources to ‘punish’ parents,” and it can take a wide range of forms from refusing to respond to emails or return phone calls, not allowing parents to view records, or continually canceling school meetings and conferences. But sometimes the retaliation can be more sinister. Anecdotally the internet is filled with stories of parents who claim their school districts have reported them to child protective services, filed truancy charges against them, or had restraining orders imposed on them, all as the result of their advocacy on behalf of their children.
The more the Department of Education carves out legal immunity for schools and the more advocates are disempowered, the more schools will appear as a haven for every species of child abuser. This is especially true of disability-only schools and classrooms, where most of the deaths and injuries to students occur. Disabled children are also at a doubled risk of sexual abuse: the epidemic has served up an endless supply of silent victims.
The statistics are very disturbing but Greenwald still has a point: certain genuine crises can too easily be used as Trojan horses for incursions on constitutionally-protected freedoms. Take Attorney General Alberto Gonzalez’s misrepresentation of “online predators” as part of his administration’s campaign to justify internet surveillance—this from the man who signed off on water boarding. Anyone questioning the campaign’s noble surface motives—combatting pedophilia— risked being accused of a “pro-molestation” stance or being “anti-child safety.” This is why facts are important especially when an issue is a moral hostage-taker and can be used to disguise government over-reach. Though there probably are a huge number of online predators, the answer may be more vigilant parental monitoring, not the death of internet privacy.
By a similar token, putting cameras in schools and on buses and allowing parent access could arguably be a piecemeal policy, not a bid to put more cameras up in public spaces and increase domestic surveillance. In any event I agree that cameras should be taken down from public squares and warrantless domestic spying should cease in the US.
If there are counterbalances to prevent school surveillance from being institutionally misused to suppress student individuality or political freedom, these issues should certainly be explored and measures taken. But if the concern is that cameras in schools and on buses are a Trojan horse to unleash more general surveillance of private citizens, it’s important to realize that many schools already have cameras installed for internal use to bust and discipline students and protect property; and wired schools already share this evidence with law enforcement—although rarely to report on staff. And again, families are frequently denied access to the same tapes. Maybe the answer is that a parent “union” controls the technology from the outset or parents wire individual children, waiving wiretapping constraints in the few states which require two-party consent for audiorecording (these vary in rigidity as it stands).
Regarding existing surveillance, schools in fact have no legal grounds to withhold this kind of evidence from parents if it exists, though many falsely cite student privacy concerns. Through a series of rhetorical questions, Wrightslaw illustrates why schools cannot claim “privacy” in denying families access to video:
Are parents allowed to do volunteer work at the school?
Assuming the answers to these questions are "yes," the school's "privacy issue" argument doesn't hold water. No law prevents parents from knowing the identity of kids who attend school, or kids who are in their child's class, or kids who ride the school bus.
By the time any family files a FERPA (Family Educational Rights and Privacy Act) request for access to tapes, schools will often “lose” the evidence, so access and enforcement are on the block for reform— otherwise the rest is already in place on paper.
Some object to cameras on the grounds that the use of restraint against the disabled students is necessary and surveillance and public “PC” misinterpretation would hinder staff and put them at risk. But a 1999 study found that the rate of staff injuries in the most violent mental wards were reduced significantly when the use of aversives like restraint were severely limited and replaced by alternative positive strategies.
Staff training decreases use of seclusion and restraint in an acute psychiatric hospital.
Forster et al.
Rates of seclusion and restraint in an urban psychiatric hospital were compared during the 12-month periods before and after implementing the recommendations of a multidisciplinary quality improvement work-group convened to reduce the hospital's use of physical containment. Interventions included a mandatory staff training session on the management of assaultive behavior, weekly discussion items during team meetings for each local ward, and hospital-wide publicity charting the ongoing progress of the effort. Total annual rates of restraint dropped 13.8%. The average duration of restraint per admission decreased 54.6%. Staff injuries were reduced by 18.8% during the study period.
The Government Accountability Office found in 2009 that the vast majority of deaths and injuries to disabled children in schools stemmed from restraint in response to noncompliance, not because these children posed a risk to themselves or others. This was our personal experience when our children were abused and our experience is common.
As the Forster et al. study demonstrates, training in positive strategies is crucial for reducing the potential for abuse. But Matthew Israel, the founder of the Judge Rotenberg “shock” Center— in the media again after the horrific video emerged of a child being tortured at the center—went to Harvard. The private school teacher who abused our daughter in 2011 has a master’s degree. Education does not guarantee ethics. The most tragic illustration of this was the invention of totalitarianism in the twentieth century—when some of the most highly educated people in the world caused more death and destruction within a few decades than in previous centuries combined. Training would cut down on the considerable number of deaths and injuries which occur when undertrained staff lack the means but not the will to apply positive approaches—though this would not make everyone in a system honest or endow them with compassion.
Totalitarianism also brought us the surveillance state, though not surveillance of the state: that’s a democratic construct.
For all these reasons, many believe that there should be federal laws in place protecting children from abusive practices in schools, including the mandated use of video surveillance with sound capacity. All due respect to those who argue for states’ rights, but states and communities have had many years to make reforms and little has changed. State and local authorities have subjective and economic concerns when regional institutions are exposed as unsafe for children.
For example, state authorities in Texas had received reports of deplorable conditions in state run group homes for years; but only when the infamous “fight club” video was released in the national media showing night shift workers terrorizing disabled group home residents into assaulting one another were authorities forced to respond with emergency legislation. Though the perpetrators in this case were prosecuted, the state continues to have problems with conditions in group homes. Releasing video may bring public pressure to bear but in itself is not sufficient to enforce standards. But public awareness and outcry typically increase with each exposure and institutions lose funding.
Members of the public may wax apathetic in response to written reports of abuse of the disabled. Some might envision dangerous, rampaging mentally challenged males and be glad these individuals are “kept under control.” But the public has a significantly different response when exposed to images of a sweet disabled adult like Taylor Hartley being brutalized by a care worker: it becomes apparent that not all the victims fit the fearful stereotype. Study after study in social psychology has found that breaking up stereotypes in the media has measurable impact on public attitudes.
It matters. Reporter Donna Pitman from KMBC 9 News Kansas City recently posted a photograph of two unidentified individuals who, upon seeing a man in a wheelchair crying because he couldn’t see the stage at a concert, lifted the man up and held him for the duration of the event so he had a good view.
How did these good Samaritans come to be motivated? The public genuinely needs to be exposed to the full human side of disability—from pleasure in living and accomplishment to exposés on risk, deprivation and suffering— to break through the more shallow media rubrics.
All the same, cameras are not a panacea and change is a process. For example, even after the Rotenberg torture video was released to the public, Massachusetts legislators left the issue out of the state budget. But this administrative regression to “pre-video” denial has not gone over well with the public and the issue may impact elections.
What are the “real numbers” for school abuse of the disabled? No one knows. There’s no mandated national reporting for schools. Senator Harkin’s Keeping All Students Safe Act (S. 2020 and H.R. 1831), is up for vote and attempts to address the reporting issue and others, but the bill does not include cameras, which many advocates had hoped for.
In 1998, the Harvard Center for Risk Analysis estimated that 3 individuals with special needs die every week in US schools and Institutions due to abusive practices like restraint and seclusion. The Hartford Courant, which had requested the study, concluded that the actual toll could be three to ten times higher than estimated.
30 restraint deaths per week in the US? A total of 1560 per year? It’s inconceivable. The estimates must be wrong. But there they are— and no one can either confirm or deny them.
Granted Harvard’s estimates included adults in mental health facilities but stressed that the highest statistical risk was to children. Would it really have been so hard to hide, for example, 30 child deaths per year among approximately 4,000 children ages 0-19 who died annually in Texas in the mid-1990’s?
Of the 23 restraint deaths within an 11 month period investigated by the Courant, 13 were children with special needs. Only one case led to a criminal investigation. Official causes of death were variously cited as “asphyxiation,” “cardiac arrhythmia,” “severe asthma attack,” etc. Among the overall 53,000 child deaths per year in the US, more than 14,000 are attributed to a range of “natural” and “accidental” causes which could potentially conceal death by mistreatment. The Scandinavian autism mortality studies echoed this obtuse language—causes of death are often reported simply as “cardiac insufficiency,” “circulatory disease” and “accident.” It’s only because a Georgia school had been unable to hide its “therapeutic” mistreatment of a child with cerebral palsy that his involved parents understood how he died and were able to alert authorities.
It’s also chilling that nothing has improved since 1998 other than Substance Abuse and Mental Health Services Administration (SAMHSA) outlawing certain forms of restraints in institutions and residential care. Though this particular law is clearly still under-enforced, it should by rights also apply to any institution which is federally funded. But state Protection and Advocacy agencies have unilaterally refused to even apply the law to schools. So considering the six fold increase in autism since 1998 and the parallel explosion of many other types of cognitive injuries and behavioral disorders— and considering the lack of protection and enforcement in schools— there is no reason to believe the 3-per-week death toll has gone down and all the more reason to believe that the scene of the crime is likely to be schools. Again, since there’s no mandatory reporting and schools have no incentive to report on themselves, the toll could have easily risen and no one would know.
I always shake my head when people say they can’t believe such things are happening “in this day and age,” as if human nature has somehow teleologically evolved since people skinned dogs and lit them on fire for sport in the old west or brought the kids to public executions, etc. Nothing in history—particularly in the last century— provides us with any evidence that human nature is ethically advancing. I think history argues that we are as good or as bad as we ever were or will be. Did anyone believe that no one would ever skin dogs again if there was no enforcement against it? Or abuse the disabled?
If anything in society has changed from time to time, it might only prove that social organization and enforcement can promote or defeat the best or worst human motivations within systems. It’s something to think about considering that institutional treatment of the disabled—or children in general— has never been able to stand up to transparency in any day or any age.
Connecticut Group Home Arrest (CNN)
Adriana Gamondes is a contributing editor to Age of Autism and one of our Facebook administrators. She lives in Massachusetts with her husband and recovering twins.