March 13, 2019; DisabilityScoop
More than 200 disability activist groups, including the Autistic Self Advocacy Network, the Autism Society, Easter Seals, the National Disability Rights Network, The Arc, and the American Association on Intellectual and Developmental Disabilities have sent a letter to the US Food and Drug Administration (FDA) asking the agency why it has not yet fulfilled its promise to ban devices used to administer electric shocks to people with developmental disabilities under the guise of behavior modification.
Readers may remember our coverage of this practice at the Judge Rotenberg Center in Massachusetts, which has been the focus of advocates’ protests and has been cited for human rights violations by the United Nations. You can read here about the history of the controversy.
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The advocates call the practice torture and want an agreement that proceeds quickly and forbids grandfathering or a slow phase-out. Five years after an expert panel recommended the measure, and two months after the agency agreed to the move, the FDA has yet to implement it. (Last year, the FDA indicated that it would finalize regulations banning the devices by the end of 2019.)
Scott Gottlieb, who is set to leave his post as FDA commissioner next month, wrote last year when the decision to finalize the ban was first made public, “We believe these products present an unreasonable and substantial risk to public health that cannot be corrected or eliminated through changes to the labeling.”
“In the nine years since this issue was raised to the FDA, some of our nation’s most vulnerable people have been subjected to unbearably painful electric shock for such harmless behaviors as getting out of one’s seat, interrupting, whispering, slouching, swearing or failing to maintain a neat appearance,” the advocates write in their letter. “We the undersigned urge HHS and the White House to prioritize and take all actions necessary to ensure this critical rule is immediately finalized and implemented.”—Ruth McCambridge