MAPLEWOOD, NJ - This Monday, New Jersey Sen. Bob Menendez led a roundtable with local parents of children with autism at Maplewood’s Words Bookstore, the latest stop on his Jersey Jobs Tour. Menendez addressed parents’ concerns of treatment costs and overall legislative representation. He pointed out how New Jersey has the highest rate of autism spectrum disorder (ASD) in the country, with one in every 34 children currently diagnosed.
The senator introduced the Autism CARES Act, which developed into a 2014 law that authorizes federal assistance programs and funds research for autism treatment and therapy. In support of young adults with autism, Menendez currently sponsors the Assistance in Gaining Experience, Independence and Navigation (AGE-IN) Act.
Ellen and Jonah Zimiles, owners of Words Bookstore, also work to transition individuals with autism into adulthood. They opened the store in 2009 to train young people with autism in vocational skills, including their son Daniel. To date, they have hired more than 100 employees.
“Words Bookstore is an incredible place—a wonderful, nurturing and inclusive environment for children with autism to thrive,” Menendez said. “Not only do they provide invaluable resources and learning opportunities, but they also employ many with developmental disabilities, helping them gain the tools necessary to live independent, productive lives.”
The Zimiles received the 2018 Caryn Schwartzman Spirit Award from the Autism Science Foundation for their work at Words, an honor dedicated to parent advocates. On Monday, fellow autism parents filled the bookstore basement alongside Menendez. Their children’s stories highlighted a lack of federal and state financial resources.
Radhika Ramaswamy said her son Ashwin’s Medicaid insurance model limits his daily vocational training, which could hurt his future career. Additional fundraising from a local support program is still not enough to supplement his insurance, she said.
“I don’t know what the solution is, this is the system we live in,” Ramaswamy said. “[Caregivers] deserve five times, ten times, twenty times more money than they get from my child for helping him every day but there is no money. So how do we get through this?”
Participants noted that insurance also falls short for additional medical issues associated with autism, which commonly include seizure disorders, immune disorders and gastrointestinal disorders. In response, Menendez praised the 2010 Affordable Care Act for eliminating pre-existing conditions discrimination and expanding Medicaid coverage.
“I fully understand the co-medical issues which is why I fight so hard, as well as the authors of the Affordable Care Act, to preserve it,” Menendez said. “It’s not a perfect law...but it dramatically increased insurance coverage for people, changed the paradigm of our health coverage.”
Parents also criticized the lack of legal protection for adults with autism, who they said face untrained law enforcement officials. Pam Kattouf’s 17-year-old son faces gastrointestinal issues that lead to self-injury and aggression. She worries about his actions being misinterpreted in public. “My biggest fear is that as he’s getting older he could be arrested,” Kattouf said.
During these public episodes, people of color with autism may face racial profiling. Doreen Oliver recounted how a man threatened to punch her 12-year-old son when the boy walked too closely. People often call the police, Oliver said, rendering her black son a “double target.”
Menendez mentioned the 2018 Kevin & Avonte’s Law, which he said trains law enforcement to identify people with autism and communicate with parents in emergencies. The law is mainly designed for children with autism or individuals with Alzheimer's who wander off. The next step, he said, will address conflicts similar to that of Oliver’s son.
The senator said he has utilized the Autism CARES Act to learn from parental organizations and advisory groups on all autism-related issues. As the law is reauthorized, he hopes to increase opportunities for their feedback.
Yet some parents are currently left out of the conversation, Ellen Zimiles said, due to language barriers or varying education levels. She observed the results of a recent survey of Latino autism parents in Newark, which Jonah had assisted in translating from Spanish.
“The needs and the wants of those parents were exactly the same as the people in this room,” Ellen said. “It’s very hard to find services when you don’t even know what to ask for.”