CANTON, Mass — As Massachusetts grapples with the youth mental health crisis, options for kids with some of the most severe needs can be few and far between.
When retired Judge Carol Erskine, former first justice of the Worcester County Juvenile Court, left the court in January: “It was an 8 to 10-month wait for children and DCF to get services just to begin therapy.”
Erskine said if a child needs a residential placement and has special needs like autism spectrum disorder, there are even fewer options, as Boston 25′s Kerry Kavanaugh has been reporting for several years.
It is one of the reasons the Department of Children and Families currently has nine children placed at the Judge Rotenberg Educational Center in Canton, 25 Investigates has learned.
The use of the pain-causing shocks is prohibited for kids in state care.
Still, Erskine said the placement of DCF children at JRC raises red flags for her.
“I would have grave concerns about DCF children observing this kind of treatment of others,” Erskine said. “I would think that it would be very traumatic.”
25 Investigates asked the Judge Rotenberg Center if children ever witness anyone being shocked by the devices.
A spokesperson for the center declined an interview, but said in a statement: “Children do not live in residences or share classrooms with those who are authorized to receive the treatment.”
For decades, the residential school has been under fire over its use of controversial shock therapy on people with behavioral, emotional and psychiatric challenges. Its founder designed the electric shock device, and a 1987 consent decree allowed its continued use with court approval.
The Canton center is the only place in the U.S. that uses electric shock devices.
Currently, 53 adults are authorized to receive shocks, according to a spokesperson for the center.
Those students wear backpacks with electrical stimulation devices, which workers employ by remote control when students engage in unwanted behaviors.
Some parents say the aversive procedure keeps their adult children from hurting themselves or others – including in cases where individuals can cause immense self-harm to themselves. None responded to 25 Investigates requests for interviews.
But the use of the electric shock devices has drawn condemnation from leading medical bodies, a chorus of people with disabilities as well as the United Nations. A torture investigator in 2013 found the device violated the U.N. Convention Against Torture.
Leo Sarkissian, executive director of advocacy group The Arc of Massachusetts, said he is also concerned about the impact of witnessing the devices being used.
“Whether it’s a person with a disability who doesn’t get the treatment or it’s a 14-year-old who…finds himself or herself at JRC, I’m sure there are secondary problems from seeing it used and what the implications of it are,” said Sarkissian, whose group advocates for people with Intellectual and developmental disabilities, including autism, and their families.
SHOCKS NOT USED ON CHILDREN
Video of a patient screaming as he received shocks first surfaced more than a decade ago during a court hearing.
Andrea Grossman, a spokesperson for DCF, said the department places some kids in its custody at Judge Rotenberg Center because: “No other congregate care programs capable of meeting their needs.”
The use of the shocks is prohibited for kids in state care, Grossman stressed.
And electric shock devices are not used on any children at the Judge Rotenberg Center, the center’s lawyers court.
DCF began contracting with the school in the spring of 2020, according to DCF.
Since then, the agency has placed seventeen children overall at Judge Rotenberg Center.
The center’s staff include psychologists, behavior analysts, mental health professionals and speech-language pathologists.
“Children in DCF custody are placed at the JRC because staff are specially trained to work with children with complex needs to help them reach their fullest potential,” Grossman said in a statement.
Grossman said all young people involved with DCF meet with an assigned social worker at least once per month. Children in DCF custody have assigned attorneys who can bring concerns about their case before the juvenile court.
“Over the last several years, DCF has seen an increase in the acuity of children coming into care, including children with Autism Spectrum Disorder and children with severe behavioral issues,” Grossman said. “Safe congregate care programs are imperative for children who need intensive treatment so they can safely and successfully move to a setting like a foster home or back to their family home when they are ready.”
Erskine pointed out that federal and state laws mandate that students receive special education in the least restrictive environment.
“The question becomes whether or not that’s the least restrictive setting for these children,” Erskine said.
HISTORY OF NON-COMPLIANCES
Meanwhile, there are signs the Judge Rotenberg Center does not always adhere to state regulations.
The state Department of Early Education and Care, or EEC, licenses the center and other residential programs serving youth up to eighteen.
The department told 25 Investigates that EEC investigations revealed Judge Rotenberg Center has had 235 license non-compliances since 2016.
25 Investigates has filed records requests to get more specifics on these issues.
A spokesperson for the JRC said compliance issues range from simple policy violations to more serious issues, adding those issues are “most often self-identified and immediately corrected.”
“During JRC’s most recent licensing study, there were zero instances of non-compliance,” spokesperson Casey Sherman said.
One of the regulations that licensed programs must comply with states prohibits “unusual or extraordinary treatment” – including “aversive treatment.”
MILLIONS IN STATE, FEDERAL FUNDING
Despite the violations and decades of controversy over the use of shock devices, 25 Investigates reviewed independent audits showing contracts with state and local government agencies account for the vast majority of JRC’s funding.
For the fiscal year ending in mid-2021, the center got $89 million -- or 98% of its total public support and revenue -- from state government agencies.
The Department of Children and Families has paid millions to Judge Rotenberg Center since 2020.
By the fiscal year ending June, it had spent $2.8 million on group care, according to state agency expenditure data published by the Office of the Comptroller.
And, $3.6 million in COVID-19 funding went to JRC in 2022, according to state expenditure reports.
Overall, state and federal spending on the Judge Rotenberg Center has more than quadrupled - from $6.6 million in 2010 to $28 million in the most recent fiscal year ending in June, according to 25 Investigates’ analysis of state comptroller data.
‘BACK TO THE DARK AGES’
25 Investigates spoke with several children’s advocates and experts who question why the state would contract with the center -- and why Massachusetts lawmakers have not banned the use of the shock devices.
Zoe Gross, director of advocacy at the Autistic Self-Advocacy Network in Washington D.C., said the shock devices are traumatizing.
“It causes anxiety,” she said. “It causes depression and post-traumatic stress disorder.”
Professor Helen Tager-Flusberg, who leads the Boston University Center for Autism Research Excellence said: “It’s completely dehumanizing and takes us back to the Dark Ages.”
“It’s not a treatment,” she said. “It’s in some ways just a form of torture.”
Tager-Flusberg said the use of aversives dates to the 1960s and 1970s.
“But I think we learned over the years that using aversive and treating self-injurious behavior or other forms of severe aggression really wasn’t the appropriate tact to take,” she said.
Critics of the Judge Rotenberg Center have long said the school relies on heartbreaking anecdotes – rather than solid, peer-reviewed research – to tout its devices.
Tager-Flusberg said there is no evidence that aversive shocks lead to any long-term change.
“We certainly know that aversives will end an incident of self-injurious behavior,” she said. “So, it’s effective in that way. But does it lead to long term change? As far as we know, that is not the case because if it was, the school would not need to be continuing to use the aversives. So, when a person who, for reasons we really don’t understand, engages in this kind of severe behavior, yes, you can stop one incident of it, but that individual is likely to go back to self-injurious behavior on future occasions.”
Tager-Flusberg said evidence-based alternative treatments exist – including positive reinforcement and medication.
Still, she said there is a need for even more research: “So I hope we can use this as a call for saying: ‘Let’s look into why people engage in these behaviors and let’s seek out far more effective and certainly more humane approaches to treatment.’”
Sarkissian, of the Arc, said he questions why courts have given so much weight to parent testimony: “Really you have to think about that, like, would that work on anybody else? Would you be able to go: “Oh, the parents are okay with it?”
Sarkissian said the devices should be limited to “exceptional” uses in clinical settings alongside positive reinforcement.
Groups fighting the long-term use of electric shock devices include: the American Academy of Pediatrics, the American Academy of Developmental Medicine and Dentistry, the American Association on Intellectual and Developmental Disabilities, the National Association for the Dually Diagnosed, the Arc of Massachusetts, the Massachusetts Developmental Disability Council, the International Association for the Scientific Study of Intellectual and Developmental Disabilities and national associations representing state directors of developmental disabilities services and special education.
“Instead of punishing challenging behaviors with painful techniques, professionals now reward appropriate behaviors with positive behavior supports,” reads an amicus brief submitted in April by the American Academy of Pediatrics and other groups. “These techniques have more success and are vastly less dangerous. As a result, the purposeful infliction of pain, and in particular the use of contingent electric shock, on people with IDD is now universally disfavored and condemned by IDD professionals, clinicians, administrators, and certification bodies.”
‘A HEART-WRENCHING ISSUE’
25 Investigates reached out by phone and email to families who have credited the therapy with saving the life of their child. None got back to us, and the JRC declined an interview with school officials or families.
In a nearly 70-page decision this month, the state’s high court ruled only the state legislature could ban the use of the shock device – allowing their continued use on adults for now.
“This case thus involves a heart-wrenching issue: continue to protect a controversial practice that has widely been criticized, or pave the way for its prohibition at the risk of subjecting these vulnerable patients to a life of sedation and restraint, or extreme self-injury,” reads the decision.
The ruling noted that it was based on evidence before the court in 2016, when “the medical community remained divided as to whether JRC’s treatment approach fell outside the professional standard of care for the most severely disabled patients.”
As recently as this year, groups such as the Association for Behavior Analysis International rejected the use of the devices.
The ruling also stressed that the state Department of Developmental Services has not always availed itself of another option to limit the use of aversives: by attending the roughly 60 probate court hearings where treatment plans get authorized each year.
“The department has the ability to oppose the use of the GED on a particular patient at these yearly substituted judgment proceedings, but, in practice, the department rarely does so,” the ruling reads. “In one 2014 proceeding where the department did choose to participate, the Probate Court ultimately sided with the department and declined to authorize the use of the GED on that patient.”
The ruling cited testimony from families who support the use of electrical devices.
“Yet the families of these clients claim that JRC has been singularly effective in preventing their children from engaging in severely self-injurious and destructive behaviors, such as gouging their own eyes, puncturing their own bodily orifices, and violently attacking others,” reads the ruling.
One mother testified: “‘[My daughter] says her whole world opened up…. She has gone from a person that is isolated and medicated and injured and unhappy to a young person that is happy and able to live in a world and experience what other people experience.’”
The mother said her daughter had a long history of school expulsions and hospitalizations for “severe aggressive behaviors” and previously was prescribed over twenty medications and faced “long periods of seclusion and restraint at prior placements.”
A father testified: “that his son came to JRC with incredibly harmful behavioral issues, including rectum and throat gouging, eye picking, and self-induced vomiting. After being placed at JRC and treated with the GED, and in contrast to prior pharmacological treatments, the dangerous behaviors substantially decreased. The father testified that his son is ‘happier now than he’s ever been’ and engages in hobbies and field trips.”
One former patient who received the shocks said residential programs repeatedly expelled her or rejected her due to “extremely violent behaviors.”
“During this time, she was treated with numerous medications, which she testified had the effect of making her feel like a “zombie,” and was repeatedly placed in physical restraints, including straitjackets,” the ruling reads. “When she finally came to JRC and began treatment with the GED, her self-injurious behaviors drastically decreased, until they went away completely.”
In a statement to 25 Investigates, the Judge Rotenberg Center defended the use of the devices as a “matter of life and death: “JRC is the national resource for clients with life-threatening, self-injury, and aggression who are not responsive to any other treatment at any other facility. These clients suffer from severe, refractory self-injurious and/or aggressive behaviors so extreme that they often result in profound physical injuries including blindness and mutilation.”
The center said it “receives some of the most difficult cases of treatment-resistant behavior disorders in the United States.”
“For less than 17% of JRC clients with extreme behavior disorders who had previously been placed on cocktails of psychotropic drugs and left catatonic at other facilities, our court-authorized GED treatment is a lifesaving tool that affords them a better quality of life for themselves and their loved ones,” the statement reads.
“JRC and the parents and guardians of JRC’s clients will continue to ensure that this treatment remains available to those for whom all other treatment options have been tried and failed,” says the center.
And in an April court filing, the Judge Rotenberg Center said court approval is mandatory for the use of antipsychotic medications on certain patients.
“Every judge authorizing GED treatment has considered — and specifically rejected — antipsychotics as an alternative to GED in every single individual substituted judgment case, usually because drugs were already attempted but ineffective at treating the severe behaviors of JRC’s patients (leading to their admission to JRC in the first place,” reads the center’s filing.
FIGHTS AGAINST A BAN
Tager-Flusberg criticized the lack of a state ban on electric shock devices.
“I think it’s a stain on the Commonwealth, to be honest,” she said.
“Repeatedly people have brought the issue to the attention of our legislature,” she said. “And nothing’s happened because the lobby is very strong on the other side. And you know, those heart-wrenching stories, and you know, people have decided to let it go.”
The Judge Rotenberg Center has spent heavily to fight bans on the devices at the state and federal levels.
In 2023 alone, Judge Rotenberg Center reported paying $235,000 to lobby the White House, the Department of State, the FDA, and the Office of Management & Budget.
Since 2010, Judge Rotenberg Center has reported spending $2.4 million on lobbying on the federal and state level, according to 25 Investigates’ analysis of federal and Massachusetts lobbying reports.
A bill to ban “any procedure which causes obvious signs of physical pain” on people with disabilities is pending in the Massachusetts statehouse.
Such bills have floundered for years – Sarkissian said it once passed the House and twice passed the Senate.
In New York, a bill to ban public funding for “aversive interventions” passed the Legislature’s disabilities committee with a 5-0 vote in May 2022.
“Accordingly, this legislation seeks to end the practice whereby New York State spends millions of dollars sending its children to out-of-state facilities that engage in such practices,” reads the bill’s justification memorandum.
The bill, known as Andre’s Law, is named for Andre McCollins, who was shocked 31 times on a day in 2002. Over a decade ago, Boston 25 obtained footage showing the autistic teenager from New York City being restrained and shocked for hours at the Judge Rotenberg Center.
The latest version of the bill is pending in committee.
Judge Rotenberg Center has reported spending $70,000 to lobby New York lawmakers on Andre’s law as well as another bill concerning out-of-state adult residential facilities.
On the federal level, the U.S. Food and Drug Administration banned the use of the devices in 2020 – but an appeals court overturned that ban in 2021. Last year, Congress passed legislation to allow the FDA to try to ban the devices again.
This summer, the FDA said it plans to finalize a ban on the use of the electric shock devices for self-injurious or aggressive behavior as soon as December.
The school’s legal battles have proven costly: the Judge Rotenberg Center reported spending $1.4 million on legal fees in the tax year ending June 2022.
The nonprofit Judge Rotenberg Center must report how much it spends lobbying bills on its federal tax forms, which show $1.7 million on lobbying legislation alone since 2010. That does not include how much it has spent lobbying regulatory bodies like the FDA.
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