Tom Spadaro is an advocate not only for himself but for others in the disability community — and his persistence has helped dozens of his neighbors and may end up helping many more across the country.

The 52-year-old Toms River resident has been a quadriplegic since the age of 11, when a friend was showing him a gun and it accidentally discharged, shooting him in the head.

Spadaro says he has been fortunate to have been able to live at home for most of the time since the accident, but to do so, he is dependent on home health aides.

When the coronavirus pandemic hit, a health-care worker plus his wife, Ellen, were helping take care of him. But without the proper personal protective equipment (PPE) for the health aide entering their home, the full responsibility for Spadaro’s care — including help with eating and bathing — fell to his wife.

Things changed on July 20, when a face shield, 150 masks, and hand sanitizer were delivered to Spadaro’s house. He was among 42 Ocean County residents set to receive the packages. The shield was the most important piece of equipment because health aides have to work so closely with him.

“It felt great when that shipment came,” Spadaro said.

And it was the result of the work that Spadaro spearheaded, the culmination of a truly determined effort.

Making connections

First, Spadaro contacted U.S. Rep. Andy Kim (D., N.J.) for help. The two had met while Kim was campaigning before the November 2018 election. Kim went to Spadaro’s house, and they spent an hour discussing the needs of people with disabilities.

They stayed in touch, and when the pandemic arrived, Spadaro reached out to Kim’s office, explaining his community’s unique need for PPE. Kim’s district encompasses most of Burlington County and parts of Ocean County.

Spadaro also contacted Michael Blatt, a retired coordinator from the Ocean County Department of Human Services.

“If you met with Tom, he is a tremendous advocate for people with disabilities, and his story is a powerful one about his life,” Blatt said.

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Before the pandemic, Spadaro was working in a disability-awareness program funded by the county’s Department of Human Services, speaking to students about living with disabilities.

“He’s an unbelievable speaker,” Blatt said.

And a good organizer as well.

At Spadaro’s urging, people from Kim’s and Blatt’s offices collaborated in hopes of finding a way to get necessary PPE to those like Spadaro. They identified two nonprofits that could help: First Responders Children’s Foundation and Compass 82.

First Responders Children’s Foundation is a national organization based in New York that was formed in 2001 to help families who lost loved ones in 9/11. Compass 82, located in Toms River, specializes in disaster-recovery relief.

In answering Spadaro’s initial request, First Responders Children’s Foundation supplied six months of face shields, hand sanitizers, and surgical masks. Compass 82 began delivering them around Ocean County on July 20.

“I am very grateful,” Ellen Spadaro said. “Now we can have an assistant come back in safely. And I will get a little break. It has been a long five months.”

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Tom Spadaro isn’t stopping now that he’s succeeded at getting PPE for himself and 41 other Ocean County residents. He is hoping that programs like this can be instituted throughout the country.

A survey by the University of Minnesota’s Institute on Community Integration in 2017 found that an estimated 7.3 million people with intellectual or other developmental disabilities live in the United States, with the majority living in the family home and receiving support from a family member.

Kim, who is among 12 members of Congress serving on the House Select Subcommittee on the Coronavirus Crisis, says he is exploring ways to get PPE to more people who need it the most.

“I have been working very hard to make sure that we have the resources to produce the level of personal protective equipment that we need nationwide, to make sure that New Jersey is fully stocked up,” Kim said in a phone interview. “This is something we have to keep working on and building toward. We need to make sure that we have all that equipment that is there, that we don’t have the shortages that we had earlier this year, which caused such chaos.”

He said he is especially aware of the needs of those with disabilities.

“When it comes to [that] community, when decisions are being made about where to send the personal protective equipment, they can’t be left off the equation.”