‘Meet the moment,’ disability advocates urge at statewide session held in Northampton

NORTHAMPTON — Monica Samano, a 37-year-old Easthampton woman with disabilities, enjoys an active, independent life in her community. But she worries about what will happen when her mother and caregiver is no longer able to care for her.
“I’d like to live in our house with people helping me, but I don’t know if that will be possible. It is expensive,” she said.
Gene Traver of Greenfield shares similar concerns for his son, Noah, who is autistic. Traver wants more disability services available in Franklin County so Noah can remain in the community where he grew up. Currently, Noah travels to Easthampton for services at Riverside Industries, an organization that provides life skill development, day habilitation and employment options for adults with intellectual and developmental disabilities.
“The vision that we have for Noah, and I believe he has for himself, is to stay in Greenfield, to associate with his former high school classmates, maybe get a job with one of them who knew him when he was in school,” Traver said. “They would look out for him and really care for him.”
Samano and Traver were among dozens of people who shared their experiences during a “Meeting the Moment” listening session at the Northampton Senior Center on Tuesday. Hosted by the Massachusetts Commission on the Status of Persons with Disabilities, a permanent 23-member independent state agency, the session brought together individuals with disabilities, families, advocates, service providers and community leaders to discuss issues affecting the disability community across the commonwealth.
State Rep. Lindsay Sabadosa, a member of the commission, and state Sen. Jo Comerford attended the event that is intended to inform lawmakers about how to meet the needs of Bay Staters with disabilities. The feedback provided in this and three other sessions taking place throughout the state will inform policy for the next legislative session.
The event also featured a resource fair at which 30 organizations were present to provide information, services and support for people with disabilities and their families.
Speakers described barriers to inclusion in higher education, the workplace and the broader community. Many cited shortages of accessible housing and transportation, while others called for increased funding for disability services and higher wages for caregivers.
Participants represented a wide range of disabilities, including autism, deafness and severe environmental sensitivities.
Jonathan Ozek, founder and CEO of the Hear You Rise Foundation, advocated for more flexible workplaces for deaf and hard-of-hearing employees.
“Flexibility can look like many things. It can be adjusting a process, remaking a requirement. It’s asking, ‘What do you need?'” he said, urging employers to adopt more people-centered policies.
Employment was also a recurring theme among autistic participants, who stressed the importance of meaningful work and community inclusion.
Matthew Mattingly, a retired multimedia director at the University of Massachusetts Amherst, said the university has failed for years to adequately address accessibility concerns for students and employees with disabilities.
“The lack of accommodations at the university rises to the level of outright discrimination,” he said.
Among the problems he cited were inadequate curb cuts, malfunctioning power-assisted doors and delayed snow removal that has left students unable to access dormitories and dining facilities. He also criticized the university for failing to adequately consult people with disabilities when developing policies and procedures.
In 2022, the advocacy group Access UMass submitted a 30-page report detailing those concerns and others. Mattingly said the university has offered “lip service” but produced few meaningful changes.
“The commonwealth prides itself on being open to all people, and the current situation on campus is a blight on those established values,” Mattingly said.
In a statement, UMass spokesperson Emily Gest responded saying, “as noted on the Disability Services website, we urge anyone who experiences accessibility issues to report them to Facilities Management so they can be addressed.”
Eliza Lake, former executive director of Hilltown Community Health Centers, discussed the challenges facing rural healthcare. Although about 10% of Massachusetts is rural, she said, residents in those areas experience higher rates of heart disease, diabetes and tobacco use.
She said new federal funding will expand home healthcare and telehealth services over the next five years.
Letitia Ward, a disabled woman, called for improved access to healthcare and nutrition programs while urging lawmakers to increase wages for caregivers.
Joining the meeting via Zoom, Ali Rheaume asked attendees to imagine registering for a conference, preparing for work, meeting friends or simply shopping for groceries — only to end up in the emergency room after exposure to perfume or other fragrances.
Rheaume urged policymakers to promote scent-free public spaces. Addressing critics who may argue that fragrance-free policies would leave public restrooms smelling unpleasant, she said: “The smell of poop has never killed anybody.”
“Listening is one of our most important responsibilities as elected officials,” said Sabadosa. “These conversations are essential. They provide a roadmap for meaningful action and help us build a state that is more accessible, inclusive and responsive to everyone.”
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