Months after the Food and Drug Administration pledged to ban devices used to administer electric shocks on people with developmental disabilities, advocates are asking what the holdup is.

Last fall the FDA said that it planned to move forward with finalizing a ban of so-called electrical stimulation devices sometime in 2019. The commitment came more than two years after the agency first proposed the move.

Now, in a letter to the federal agency, more than 200 disability advocacy groups are asking the FDA to proceed with the ban sooner rather than later.

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“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 wrote to FDA Commissioner Scott Gottlieb, U.S. Secretary of Health and Human Services Alex Azar and White House Office of Management and Budget Director Mick Mulvaney.

“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,” reads the letter signed by the Autistic Self Advocacy Network, the Autism Society of America, Easterseals, the National Disability Rights Network, The Arc, the American Association on Intellectual and Developmental Disabilities and hundreds of other groups.

The advocates said they’re hoping the FDA will act by by April 24, which they say will mark five years since a FDA expert panel first recommended that the devices be barred. And, advocates want to see a full and immediate ban without any sort of “phase-down” or “grandfathering” provision.

Only one facility in the country — the Judge Rotenberg Educational Center in Canton, Mass. — is known to be using the devices which rely on electrodes attached to the skin to deliver electric shocks in order to condition individuals not to engage in self-injurious or aggressive behaviors.

Backers of the Rotenberg Center, which serves children and adults with developmental disabilities as well as those with behavioral and emotional problems, say the method is a last resort for individuals who have not responded to other approaches. The center has indicated that it will fight any effort to ban the devices.

However, in a 2014 report, the FDA said that former students reported burns, scars, muscle spasms, seizures and other issues from the skin shocks and said the experience left them “fearful” and “anxious.”

Most recently, the FDA indicated in an agenda last fall that it would finalize the regulations banning electrical stimulation devices by the end of this year.

“We believe these products present an unreasonable and substantial risk to public health that cannot be corrected or eliminated through changes to the labeling,” 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.

At this point, Sandy Walsh, an FDA spokeswoman, told Disability Scoop that the agency “is still in the process of finalizing the rule” and “cannot speculate on specific timing.”

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