NASDDDS Offers Comments to Ban Electrical Stimulation Devices

Docket No. FDA-2016-N-1111 for “Proposal to Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior

 NASDDDS is a professional organization of the directors of state agencies with responsibility for the administration and management of services furnished to individuals with intellectual and developmental disabilities. The membership includes representatives from all 50 states and the District of Columbia.   Although states may vary on service model designs, all of our member’s support people with Intellectual and Developmental Disabilities who also have significant behavioral support needs and none of them, with the exception of MA in the Judge Rotenberg Center, use electrical stimulation devices as a way of controlling behavior.

The field of developmental disabilities has evolved to fully embrace the right of each person to live a full and active life in their community with a social network of family and friends. Person-centered approaches that are based on listening to what is important to a person is the foundation for planning and developing support services that enable everyone to live and participate in the life of their communities.

 The history of services for people with intellectual and developmental disabilities includes the use of interventions designed to control and coerce individuals to stop an undesired behavior, adopt a new behavior and to comply with directions. These interventions have included actions that restrict movement, violate individual rights and sometimes cause psychological and physical pain.

 However, practices adopted to serve individuals with challenging behaviors have been evolving from ones that control and sometimes punish individuals to interventions that are based on knowledge about the cause of the behavior, and are designed to reduce that cause and help the person to develop alternative responses. The use of aversive practices that cause pain for the purpose of controlling behavior have generally been abandoned by state developmental disabilities agencies.

 In 2015 NASDDDS surveyed states about their rules, policies, guidelines, contracts or practices that governed Aversive Interventions.  Of the 45 states responding, 82% reported that aversive interventions are disallowed for use in service for people with I/DD.  The vast majority of remaining states that did are actively working to change their policies.   The aversive interventions identified did not include electrical stimulation devices.   Following the survey and after discussion with our members, the NASDDDS Board of Directors determined the time had come to affirmatively reject the use of interventions that cause pain and harm for the purpose of modifying behavior and to promote the use of practices that build on each person’s strengths, respects their rights and honors their preferences, supports relationships and enables each person to learn and grow.   The Board adopted a position statement on Behavioral Support which rejects the use of aversive interventions (those intended to inflict pain, discomfort and/or social humiliation in order to reduce behavior) and promotes the use of Positive Behavioral Support (PBS) practices that are founded on the assumption that all behavior is a form of communication and that behavior serves a purpose for the person.

In summary, we believe there should be a ban on electrical stimulation devises as a means to treat or control aggressive or self-injurious behavior.  We see examples time and again, in every state in the nation, that people who engage in behaviors that put themselves and others at risk if there is not intervention, can indeed be supported to engage in their lives safely without such extreme and painful interventions.