As Massachusetts-based disability advocacy organizations working 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 Massachusetts and Northeast Arc are concerned about a recent encounter between police and a self-advocate with ID/DD. (“State police sued over tackling of man with Down syndrome,” Salem News, Oct. 6).

Although all the facts of the case are not available, we believe this unfortunate incident highlights how essential it is 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.

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 been gaining greater attention as incidents come to light that could have and should have gone a different way.

One of the starkest examples is the tragic case of Ethan Saylor, the 26-year-old Maryland man with Down syndrome who died in 2013 after sheriff’s deputies dragged him handcuffed 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 communities 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 at which people with disabilities are hired to 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 with different roots has taken hold. The Autism and Law Enforcement Education Coalition, or ALEC, was developed as a program of Lifeworks in Westwood. Under the ALEC model, which is applicable not only for individuals with autism but for all people with ID/DD, 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 peers about how to handle potentially challenging situations. 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 may not be the only answer to a complex, multi-layered problem, but it provides 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, An Act Relative to Criminal Justice Training Regarding Autistic Persons, sponsored by state Rep. Paul Tucker and state Sen. Michael Moore and supported by The Arc, was included in the so-called Police Training Bill, which Governor Charlie Baker signed into law. The language mandates training similar to the ALEC program for all recruits 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.

While Massachusetts has been proactive, 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 so that ALEC training will be provided to existing police through their in-service hours.

We have the tools to give police and other first responders the best training and the best chance to understand how to interact with people with ID/DD in all instances, including crises. With 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 is executive director of the Massachusetts Down Syndrome Congress. Leo Sarkissian is executive director of Arc of Massachusetts, and Jo Ann Simons is president and CEO of Northeast Arc.

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