Beth Rimas is the mother of a 13-year-old who is autistic. She knows that Sean, a lover of potato chips, will try to sneak to the corner store if the pantry is bare. And she knows that if his routine is interrupted, it can take more than half an hour to calm him.
Rimas is also a Boston emergency medical technician. As a mother and a rescuer, she knows just how critical it is for emergency crews to recognize ahead of time that someone with special needs lives in a house that is on fire or amid another crisis.
“It’s always better to know before you go into the home,” Rimas said.
On Thursday, the Boston City Council held a hearing on a proposal to implement a citywide special needs registry that would alert emergency workers before they arrive on the scene if a child or an adult has a significant physical, mental, or developmental disability, such as autism, dementia, or cerebral palsy.
The registry would be voluntary and accessible only by emergency personnel, including Boston police, fire, and medical responders. Emergency workers would have access to the person’s medical condition, caregivers’ names and numbers, and any other pertinent information. Although the city has not settled on the details, it is likely that families would provide that information directly to emergency agencies, authorities said.
“That information is invaluable, because first responders would be able to better assist the public,” said Councilor Rob Consalvo, who initiated the proposal. “It would dramatically help them and improve their ability to rescue someone in the case of a fire or any other type of emergency.”
Initially, the registry would include only people with a special medical or physical condition, Consalvo said. Once fully developed, it could be expanded to allow residents to list other important information, such as medications they are taking or if someone is on a respirator.
The proposal emerged after Consalvo met in May with the Boston Fire Department and Bill Cannata, a firefighter in Westwood.
Consalvo saw Cannata on NBC’s “Today” program talking about his organization, the Autism & Law Enforcement Education Coalition, which helps emergency workers know how to deal with autistic children and adults in crisis.
Cannata had been training Boston firefighters since 2007 and told the councilor that his organization advises cities to create registries. “Knowing ahead of time helps you preplan what you are going to do, instead of figuring out what to do when you get there,” he said.
For example, a caregiver could inform responders, through the registry, that an autistic child is sensitive to loud sounds. The medical responders would then know to silence their sirens as they approach the home. Or if a building is burning, firefighters would know if someone inside has a physical disability.
Other cities and towns in Massachusetts already have registries, including Westwood. Cannata said Westwood’s registry, in place for three years, provides emergency crews with basic medical information, but authorities continue to look for ways to improve and expand the system.
Cannata’s goal is to get the entire state to use registries.
Registries, he said, prove useful not only in individual cases; they can prove especially helpful during disasters. “You can see what people’s special needs are, and you can make accommodations for them, including shelter,” he said.
Consalvo said he intends to meet with City of Boston technology specialists to determine how best to implement a registry, which does not need City Council approval. The city, he said, can use its technology department or contract with a private company to create and manage the registry. The councilor said one company, which has contracts with cities across the nation, told him a registry can cost $35,000 to $100,000 a year to operate.
“That’s small potatoes,” said Consalvo, “for something that is going to provide another safety measure for the people that need it most.”
That means parents such as Rimas and family members such as her son. Sean suffers from seizures, so emergency responders have been in the family’s Roslindale home before. They know to call him by his first name so that he knows they are friendly.
Rimas said that as autistic children enter their teen years, it can become more difficult to keep them out of harm’s way.
“They get bigger,” she said. “If a 4-year-old wants to run down the street, you can block his way. You sometimes can’t do that when they are 14. They are going to push you, and things can get out of control quickly.”
As an EMT, Rimas has seen situations escalate, she said, because emergency teams did not know an autistic individual was present in a home.
“You show up with the sirens blaring, and there is a tendency to move fast. A lot of people with autism do not like strangers in their own environment,” Rimas said. “If you know before you go in, you can turn the sirens off and take your time approaching the person. This will ensure your original call isn’t taken to the next level.”
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