By: Nicole Jorwic, Director of Rights Policy
Every behavior is a form of communication. This is a truth that must be remembered, as we advocate for the civil rights for individuals with intellectual and developmental disabilities (I/DD). Even self-injurious or aggressive behaviors are an attempt by an individual to demonstrate something. Supports should be in place to draw out that communication, not shock it or punish it away. This is why the recent proposed rule from the Food and Drug Administration (FDA) banning the use of electrical stimulation devices (ESD) to treat these forms of behavior is so important.
Per the FDA’s proposed rule, the use of electrical stimulation devices pose the risks of depression, fear, anxiety, panic, learned helplessness, and are associated with the additional risks of nightmares, flashbacks, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and withdrawal from usual activity. The science verifying those risks is clear, while there is no scientific proof that the use of electric shock has benefits in the short or long term.
The science has been clear for years and for decades The Arc has provided testimony at hearings on this issue, submitted comments, and filed amicus briefs encouraging the ban of these devices. Instead of using harmful and demoralizing ESDs, the focus of treatment for all individuals with I/DD who cannot use their voices or other forms of communication to express their wants and needs, must be on changing environmental factors. This will allow the roots of challenging behaviors to be found and allow the individual to discover alternative behaviors that can be used to meet their needs.
The Arc has adopted position statements opposing the use of aversive procedures since at least 1984. Our current position statement on Behavioral Supports developed jointly with the American Association on Intellectual and Developmental Disabilities (AAIDD) and adopted by both organizations in 2010, states in part:
Research indicates that aversive procedures such as deprivation, physical restraint and seclusion do not reduce challenging behaviors, and in fact can inhibit the development of appropriate skills and behaviors. These practices are dangerous, dehumanizing, result in a loss of dignity, and are unacceptable in a civilized society.
The Arc and AAIDD are opposed to all aversive procedures, such as electric shock, deprivation, seclusion, and isolation. Interventions must not withhold essential food and drink, cause physical and/or psychological pain, or result in humiliation or discomfort.
Our position statement on Education, which was adopted by the Congress of Delegates in 2011, states in part: “In order to provide a free, appropriate public education for students with I/DD, all those involved in the education of students with I/DD must ensure that students with disabilities are not subjected to unwarranted restraint or isolation or to aversives.”
The Arc is strong in its belief that it is the responsibility of government to protect individuals with disabilities from mistreatment. Using aversive procedures to change behaviors of individuals with intellectual and developmental disabilities is dangerous, dehumanizing, a violation of civil rights, results in a loss of dignity, and is unacceptable in a civilized society.
The Arc applauds the FDA in its effort to ban the use of devices that emit electric shock as a means of modifying the behavior of individuals with intellectual and developmental disabilities.