The Salem News headline was shocking enough, “State police sued over tackling of man with Down syndrome.”

As Massachusetts-based disability advocacy organizations that work together to ensure individuals with Down syndrome and other intellectual and developmental disabilities (ID/DD) have every opportunity to lead meaningful fulfilling lives in the community, Massachusetts Down Syndrome Congress (MDSC), The Arc of Mass. and Northeast Arc would like to offer our collective, shared concerns.

Although all the facts of the case are not available, we firmly believe it is essential that all first responders receive training in best practices on how to safely deescalate emergency situations that involve people with ID/DD and autism in a manner that does not include restraints, which can cause long term physical and emotional trauma.

We are hopeful that this incident will act as a launching point to mobilize our community to advocate for improved education for first responders, as well as the general public.

It is important to note that while every case is unique, the concern about how emergency personnel — whether police, fire or medical responders — engage with our loved ones with ID/DD, particularly during high stress situations, is nothing new. However, the dialogue about best practices for managing and deescalating these interactions has only been gaining greater attention.

One of the starkest examples was the tragic case of Ethan Saylor, the 26-year-old Maryland man with Down syndrome who died in 2013 after sheriff deputies handcuffed him out of a movie theatre because he was ticketless. In the wake of that horrific incident, national groups like the National Down Syndrome Society and National Down Syndrome Congress successfully pushed for law enforcement and EMS departments in some municipalities and counties to receive standard training to understand the needs of people with disabilities.

One model that came directly from the Ethan Saylor incident includes organized trainings where people with disabilities role-play various scenarios with first responders. While successful, this model has only been implemented in select areas across the country.

Here in Massachusetts, an equally successful model, The “Autism & Law Enforcement Education Coalition” or ALEC, was developed as a program of Lifeworks in Westwood. As its name implies, ALEC was originally created to ensure that interactions between law enforcement and individuals with autism didn’t go awry. Under the ALEC model, the trainers are first responders with direct knowledge, often through a family member, of a person with autism or other disabilities. Because of their first-hand experience in both worlds, ALEC presenters are equipped to speak with authority to their fellow law enforcement peers about how to handle potentially challenging situations for the best outcome. Through its “train the trainers” model, ALEC has already reached more than 50,000 law enforcement officers and responders throughout the United States.

The ALEC model has a track record of homegrown success — it has been featured in regional media and on the Today Show — it should continue to be used as a template for educating first responders about people with disabilities and about establishing best practices for first responders interacting with people with disabilities.

This has begun to happen. Last December, a piece of legislation, An Act Relative to Criminal Justice Training Regarding Autistic Persons, sponsored by Representative Paul Tucker and Senator Michael Moore and supported by The Arc, was included (as Section 116I) in the so-called Police Training Bill, which Governor Charlie Baker signed into law. The language mandates training similar to the ALEC program at police academies across the Commonwealth and the ALEC team is working with curriculum directors on implementation. The training goes beyond a focus on people with autism to include the entire ID/DD population. This means that all police recruits in MA will now learn how to recognize the behavioral symptoms and characteristics of an individual with ID/DD and autism.

While MA has been proactive about addressing this particularly intractable problem, there is still more that can and must be done. For starters, it is critical that existing veteran officers also get this training. In February, expanded legislation (H2531, S1628) was filed in the MA legislature that would do just that. Beacon Hill should pass this important bill.

As collaborative partners who help give voice to the concerns of the ID/DD community, our organizations will continue to strongly advocate with the general public and state lawmakers to make policies and legislation aimed at strengthening and expanding ALEC and programs like it. By thinking creatively and concretely, we have the tools to give police and other first responders the best training.

With this kind of collective effort and action, we can ensure that future incidents like what occurred to a young man with Down syndrome beside a Massachusetts highway in January will have the best possible outcomes.


Maureen Gallagher, Executive Director, MDSC

Leo Sarkissian, Executive Director, Arc of Massachusetts

Jo Ann Simons, President & CEO, Northeast Arc

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