The disability community and its advocates met in Trenton on Monday to commemorate people with disabilities who died of complications from COVID.
A small group of people commiserated outside the State House.
“We lost a lot of people,” said Javier Robles, a Rutgers University professor and organizer of the event. “If we had some better precautions in place a lot of them would still be here today. We have to change a lot of our thinking around people with disabilities.”
Over 200,000 residents and staff in long-term care facilities in the U.S. have died from COVID-19, according to the Kaiser Family Foundation, a nonprofit organization that focuses on national health issues. That’s a low estimate, Robles said, because disability stats aren’t reliably collected.
One speaker for whom the loss was all too real was Regina Costantino Discenza, who lost both of her parents during the pandemic. Both were residents of the Menlo Park Veterans Memorial Home.
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“My father passed away about 30 days after the families were locked out,” she told the crowd referring to their isolation. “I knew my parents weren’t going to survive without my visits. They were disabled with dementia.”
Both were diagnosed with COVID-19. Although her mom survived COVID, she died six months after her husband.
Now, as a chill returns to the air, the community wants leaders to make changes to the emergency response apparatus that failed them before winter sets in and another variant or public emergency hits.
The New Jersey Disability Action Committee (DAC), New Jersey Statewide Independent Living Council, Alliance Center for Independence, New Jersey Disability Collective, the New Jersey Council on Developmental Disabilities and Latino Action Network were in attendance.
They took turns at the podium remembering injustices, loved ones and colleagues lost. First, people with disabilities were left out of emergency planning in the pandemic’s first wave. Then came the scramble for protective gear as the state advised the community it was on its own. Disability advocates warned of discriminatory care practices in hospitals while state policymakers failed to recognize who was most vulnerable in the health emergency. Millions were vaccinated ahead of the relatively small group of about 9,000 people living in homes overseen by the state.
Robles, who spearheaded the DAC, which published a scathing report in 2020 that outlined the ways in which the state failed to protect its disabled residents, said if there were one underlying theme in all of these problems it was that leaders didn’t understand people with disabilities, their needs or how they live their lives, Robles said.
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Representatives of the community “should be at the table” when planning for emergencies, he said.
Last year, the DAC called for establishing four full-time positions at the state Office of Emergency Management devoted to the needs of people with disabilities in emergencies and disasters. The bill has been reintroduced to the state legislature this year.
