Rockville, MD, July 13, 2022 — The Arc of the United States through its National Center on Criminal Justice and Disability, and the Autism Society of America, two of the nation’s largest and oldest grassroots organizations representing people with intellectual and developmental disabilities (IDD), mark the national rollout of the 988 National Suicide Prevention Lifeline, a Suicide and Crisis Lifeline, by calling for true transformation in crisis response across the nation.

On July 16, 2022, the U.S. will transition to using the three-digit 988-dialing code, nationwide. The expanded hotline will provide 24-hour access to people across the country experiencing a mental health crisis or behaviors that are part of their disability.

According to the National Center for the Dually Diagnosed, 30% – 40% of people with IDD are likely to have co-occurring mental health disabilities (almost 70% for people with Autism). In addition, the Centers for Disease Control says adults with disabilities are almost four times more likely to report suicidal ideation compared to persons without disabilities (31% versus 8% in the general U.S. population).

Too often, people with disabilities in crisis have nowhere to turn and call 911, many times resulting in bad outcomes. In some instances, family or friends call 911, only escalating the situation. Research shows people with mental health conditions are 16 times more likely to be killed by law enforcement, people with disabilities make up 33% of people killed by law enforcement, and these risks increase for Black people and other people of color (Policing and Racial Injustice: A Disability Rights Perspective Impacts and Solutions, Disability Rights Ohio).

Disability-related behaviors can be misunderstood by law enforcement officers who are trained to gain control and compliance on a scene but typically not trained to identify a disability or know how to interact or communicate with persons with disabilities. Behaviors such as rocking back and forth, walking or running away when being approached or questioned, and having trouble communicating can be misunderstood and wrongly believed to be indicative of violent behavior or behavior associated with drugs.

“A mental health crisis deserves an emergency response that addresses behavioral health, as well as intellectual and developmental disability for people with co-occurring diagnoses. We applaud the launch of 988, but we believe more investment in the system is needed to ensure people with IDD who have mental health challenges, in every state, have access to the hotline and to make sure 988 effectively serves communities,” said Peter Berns, Chief Executive Officer of The Arc of the U.S.

“Suicidal ideations and attempts disproportionately affect the Autism community at a rate at least three times greater than the neurotypical rate. The Autism Society put together a Suicide Prevention Task Force, which is working to provide more actionable guidance for crisis centers, like the 988 Suicide Prevention Lifeline, to better support the Autism community,” said Christopher Banks, President and CEO of the Autism Society of America.

We urge the federal government to:

• Invest in the creation of community-based infrastructure that can effectively respond to individuals in crisis, and avoid inappropriate institutionalization, hospitalizations, or incarceration.
• Require a national training curriculum for 988 call-center staff to understand how to respond to callers with intellectual and developmental disabilities, such as Autism, Down Syndrome and Fetal Alcohol Spectrum Disorder (FASD). For example, The Arc’s National Center on Criminal Justice and Disability offers the Pathways to Justice training program. The program offers not only training but also supports a community-based response through Disability Response Teams that address the topic of people with IDD and criminal justice issues. 988 call center staff can be part of Disability Response Teams, joining a community-side effort to support people with IDD in their own communities.
• Expand the definition of “first responders,” generally thought of as police, paramedics and firefighters, to include civilian mental health crisis responders.
• Develop nationwide mobile crisis teams equipped with trauma-informed mental health professionals, peer supports, and community de-escalators.
• Invest in training mental health professionals, first responders, and related personnel in meeting the needs of people with IDD.

As 988 is rolled out in states and communities across the country, we must work to ensure community-based supports are in place for all callers, including those with mental health disabilities and IDD.