CHESHIRE — Jenn Kubicza, when discussing her nine-year-old son Cole's communication needs, does not use the phrase “non-verbal.”
About seven years ago, Cole was diagnosed with Angelman Syndrome, a rare genetic disorder. Its characteristics, according to the Angelman Syndrome Foundation, include lack of verbal speech, seizures and developmental delays. Those diagnosed with the disorder will require life-long care.
Kubicza, a town resident, said the phrase non-verbal is a stigma implying “they can't communicate at all.” That's not true, she said.
While Cole may not be able to speak verbally, he is able to communicate with his family through an app on his iPad and through gestures.
“We're able to communicate with him,” she said. Research shows despite the challenges, individuals like her son “can understand everything you say.”
Kubicza hopes that a new state law, recently signed by Gov. Ned Lamont, will have a positive impact on those with communication challenges and first responders.
The new law requires that communication aids and special training be made available to all emergency medical technicians, firefighters and police officers who handle incidents involving juveniles and adults with autism, cognitive impairments, or other learning disorders, which may impact their abilities to communicate verbally.
The law, introduced by the state legislature's Committee on Children, also tasks the University of Connecticut's Center for Excellence in Developmental Disabilities with creating the new communication aids.
UConn students proposed the legislation to committee co-chair Liz Linehan, of Cheshire, earlier this year.
Mary Beth Bruder, director of the center, said it is charged with improving quality of life for people with disabilities.
“The students wanted us to take this on... people who have communication disabilities. How a first responder would be able to communicate? There's not a lot of time to figure that out,” Bruder said.
So students developed their proposal and unearthed what Bruder called a “flip book,” which the center had previously developed. The flip books contain graphics and how-to guides for communicating with individuals who cannot speak verbally. Patrol cars and other emergency vehicles will be equipped with the flip books giving first responders ready access.
UConn students will be responsible for developing further training materials by this December.
‘Going to save lives’
Linehan said she was immediately on board with the students’ pitch.
“I loved it so much, I put in a bill,” she said. It is of some personal significance for the legislator who described herself as the “proud aunt to three wonderful fantastic boys who just happen to be on the autism spectrum. All three are non-verbal,” she said. “So it's something that we as a family deal with.”
“It's great legislation. It's needed. I'm so glad we were able to pass this in a bipartisan fashion,” Linehan said.
Republican state Rep. Tami Zawistowski, whose district includes Suffield, East Granby and Windsor, was an ardent supporter of the new measure. She said it's an expansion of a previous 2017 bill that offered training for law enforcement.
“I think, in the long term, it's going to save lives,” Zawistowski said, adding the training has the potential to not just assist individuals with developmental and social disabilities, but other disorders, like Alzheimer's Disease, and people experiencing medical emergencies such as a stroke.
Rick Hart, a Southington resident and deputy chief in the Waterbury Fire Department, is also the parent of a teenage son diagnosed with autism. He is hopeful that the access to communication aides will help first responders.
Hart said based on his family's experience he understands the issues that may arise in an emergency situation. A child with autism may not look an adult in the eyes and may speak unintelligibly.
Hart said lack of knowledge and awareness puts first responders at “an extreme disadvantage.”
“You don't know how to react, or deal with a situation when it comes up, that puts you in a difficult position,” Hart said, adding he hopes those difficulties will be reduced.
“This law is long overdue,” he said.