On Thursday, April 24, TASH Executive Director Barb Trader testified at a day-long meeting of the Neurological Devices Panel of the Medical Devices Advisory Committee to the Food and Drug Administration, urging a ban of the use of electric shock devices (ESDs) used for behavioral control. She was joined by six members of the 29-member Alliance for the Prevention of Restraint, Aversive Interventions, and Seclusion (APRAIS) who also offered testimony, as well as Lydia Brown, representing TASH New England; TASH Board members Ari Ne’eman, representing the Autistic Self Advocacy Network and Emily Titon, representing Occupy JRC; and TASH members Fredda Brown, Chris Oliva, and Dina Trianello. (We’ve linked to several testimonies below)
The panel deliberations included the following key findings:
The majority of the panel concluded that ESDs intended to administer a noxious electrical stimulus for the treatment of SIB and aggressive behavior presented a substantial and unreasonable risk of illness or injury; and,
The majority of the panel agreed that if FDA determines that a device presents a substantial and unreasonable risk of illness or injury and proposes to ban it, the Agency must apply the ban to all devices in distribution and/or in use by patients. (Summary of the Neurological Devices Panel Meeting April 24, 2014, Department of Health and Human Services)
TASH has been working toward the elimination of aversive interventions for more than 30 years. In 1990 – 24 years ago – the nation’s leading researchers on behavioral support for people with severe disabilities declared “the routine use of procedures that deliver pain (such as shock, pinching and slaps), procedures that result in harm (such as bruises, cuts and broken bones) and procedures that are disrespectful or dehumanizing (such as facial sprays, shaving cream in the mouth, foul smells) are no longer acceptable.” (Horner, R. H., Dunlap, G., Koegel, R. L., Carr, E. G., Sailor, W., Anderson, J., Albin, R. W., O’Neill, R. E., (1990) Towards a technology of ‘nonaversive behavioural support’, Research and Practice for Persons with Severe Disabilities. 15 , 125-132.)
APRAIS was formed by TASH in 2004 and now numbers 29 organizations, 26 of which are national in scope. These organizations include civil rights advocates; state agencies; education, mental health and medical professionals; and behavioral and education researchers. They also include four organizations that are led and operated by people with disabilities, and nine organizations that are parent-led. Together, these organizations represent well over one million members.
APRAIS’ vision is clear – that all children with disabilities should grow up free from the use of aversive interventions, restraints and seclusion to respond to or control their behavior, and free from the fear that these forms of behavior management will be used on themselves, their siblings or their friends.
Over these past thirty years, the disability and behavioral health fields have moved aggressively away from old attitudes and beliefs that made the use of aversive behavioral management strategies possible. We now view people – no matter the extent of their disability – as fully human and benefit most from support, not control, in order to thrive. Professionals and families are working together to advance the full participation in all of what life has to offer to all people – including those with the most significant impact of disability.
These changes in the field and in our society have led to changes at the federal level as well. For example, the Department of Education’s Resource Document for schools makes clear that “any behavioral intervention must be consistent with the child’s rights to be treated with dignity and to be free from abuse.” The Substance Abuse and Mental Health Services Administration’s National Center on Trauma-Informed Care calls for all behavioral intervention strategies to be guided by the understanding that people with behavioral challenges most likely have a history of trauma – and that violent responses to behaviors are not helpful and instead, make behaviors worse.
As a society, we’ve made great strides in disability rights over the past 30 years. As a field, we’ve learned how to skillfully support people with the most significant behavioral challenges. Therefore, it is of great importance that the Federal Drug Administration follows the advice of the panel and bans the use of these arcane, morally repugnant and inhumane shock devices.
Additional testimony from the FDA panel:
Ari Ne’eman
Lydia Brown
The Arc of the United States
ACLU
National Association of Councils on Developmental Disabilities