The use of electric shock as a last-resort measure to treat patients with developmental and intellectual disabilities at the Judge Rotenberg Educational Center in Canton has been generating controversy for four decades, and is now before the state Supreme Judicial Court.
The court must decide whether to lift a 1987 consent decree that let the center continue administering skin shocks to a few dozen patients over the protests of Massachusetts regulators who oppose the practice. A decision in the case may come in the next few months — and a ruling in favor of the state agencies seeking to end the consent decree could eventually mean an end to the controversial treatment.
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The most important question for the court is this one: Almost 40 years after the consent decree, is there a better alternative than skin shocks for treating the most challenging individuals when other treatments have failed to stop their violent behavior?
In two amicus briefs, disability rights groups siding with the Department of Developmental Services and the Department of Early Education and Care say there is no reason to use shock therapy to modify behavior. “Using electric shock for aversive conditioning is painful, psychologically damaging, and often physically harmful,” write attorneys for the American Academy of Pediatrics, the American Association on Intellectual and Development Disabilities, and others. “Because safe, effective, and less restrictive treatments are available and widely used, there is no justification for subjecting people to such unreasonable risk of injury and pain.”
These groups say the accepted way to treat patients with disabilities is through rewarding someone for positive behavior, sometimes combined with psychotropic medication.
And indeed, those treatments are all far preferable. But some patients, families, and staff at the Rotenberg Center say aversive therapy, the use of quick electric skin shocks to discourage harmful behavior, is necessary as a last resort for patients who are severely hurting themselves and for whom those other methods haven’t worked. Before a patient begins shock treatment, the center needs approvals from a guardian, medical clinicians, a human rights committee, and finally, a judge after a court hearing where the patient has an attorney. The residential center has 52 adults approved for shocks, of 304 patients.
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The center is the only US facility to use skin shocks. Opponents say this demonstrates how unnecessary and non-mainstream the treatment is. But center officials say they get the toughest patients from around the country, and the number of patients needing aversive therapy is small enough that one facility is sufficient. The center accepts patients with behavioral problems that result in violence against themselves or others, most of whom were rejected or expelled from other programs.
In interviews at the Judge Rotenberg Center, six families told the Globe similar stories of mentally ill family members for whom shocks were the only treatment that worked.
Louisa Goldberg, of Newton, put her son in a residential facility at age 9 because his hitting, biting, and hair-pulling made him unsafe at home. He was regularly restrained or drugged into a soporific state after assaulting staff before the facility, when he was 18, suggested that he be jailed. Rejecting that proposal, his family applied for admission to the Judge Rotenberg Center, which accepted him and began using skin shocks. He continued on the device for 17 years, which Goldberg called a “freeing treatment,” to get him off medication. He now lives at a center-run group home where he makes his bed, washes dishes, and has a job shredding paper an hour a day. “He doesn’t have to live like a zombie,” Goldberg said.
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Middleton residents Lauren and Martin Emmick put their daughter in the center 15 years ago, at age 17. She had been in six hospitals and multiple residential schools to treat her aggression and schizoaffective disorder and had tried 25 drugs. Lauren Emmick authorized shock treatment, after trying a shock herself, because she was desperate. “It was something that made her stop,” Emmick said. After years of seclusion and restraints, her daughter had a roommate, could go to class, and work in the center kitchen. “All of a sudden she experienced what life has to offer,” Lauren Emmick said.
The Supreme Judicial Court must be confident that those families are wrong — that an alternative that will work for their children now exists — before ending the consent decree.
The problem, as Justice David Lowy said during oral arguments earlier this month, is the SJC may not be able to answer how current science views skin shocks. The court is being asked to decide whether a Probate Court decision that kept the consent decree in place, based on evidence heard in 2015 and 2016, was correct. “To me, whether it was within the standard of care in 2016 is not really something I’m going to lose sleep over,” Lowy said. “I’m more concerned about the here and now.”
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The Probate Court also considered whether the Department of Developmental Services acted in bad faith regulating the center based on agency conduct in 2011 — which Justice Scott Kafker noted was two governors ago.
There is a strong separation of powers argument that it is time to let regulators regulate. But it would be irresponsible for the court to lift the consent agreement without addressing the core question of whether electric shock therapy should remain legal.
Lifting the consent decree would result in DDS immediately banning new patients from skin shocks, based on a rule the agency imposed in 2011, which the center has been able to ignore due to the consent decree. Existing patients could continue, although the agency could potentially launch a new rule-making process to try to ban the treatment across the board. Attorney Max Stern, who represents families of patients currently undergoing shock treatments or who previously benefited from the treatment, said the families would sue to overturn any ban.
State legislative action is unlikely. The US Food and Drug Administration previously banned the use of electric shock devices for behavior modification, but that ban was overturned in court as exceeding the agency’s authority. Congress then gave the FDA the right, but the FDA has not acted again.
Barring legislative or federal action, the decision will be up to the courts. If the SJC does not have updated information or authority to rule on the underlying issue, several justices suggested they might return the case to the lower court. That would extend the litigation, which has already dragged on for a decade, but may be the only way to give the issue a full hearing based on the most up-to-date science.
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Of course, the best-case scenario would be development of a new treatment that settles all doubt about whether electric shock is still necessary. “The moment there would be a treatment that is as effective and less intrusive, it will be used,” attorney Michael Flammia, representing the Judge Rotenberg Center, told the SJC. “Before this court or Probate Court has a chance to consider it, the parents will do it.”
Editorials represent the views of the Boston Globe Editorial Board. Follow us @GlobeOpinion.
