Families of adults with special needs face unique challenges during pandemic

The coronavirus pandemic has left families who care for children with special needs facing difficult decisions.
/ Source: TODAY
By Terri Peters and Caroline Gottlieb

The COVID-19 pandemic has brought difficult decisions to families caring for adult children with special needs.

TODAY's Craig Melvin recently spoke with families and caregivers of adults with special needs, traveling to two New York towns to meet parents who've been faced with tough decisions about the care of their adult children during coronavirus.

Carol O'Leary, whose 23-year-old son, Brendan, has autism, is a single mom who worried what would happen to her son if she removed him from his group home during the pandemic.

"I actually called my doctor and I said, 'What do I do?'" O'Leary told TODAY. "She said, 'If you get sick, or you die from coronavirus, who's gonna take care of him?'"

O'Leary made the decision to let Brendan remain at the Arc Westchester, a non-profit group home that supports individuals with developmental and intellectual disabilities. Because of her decision, it's been weeks since she's been able to see or touch her son. Still, O'Leary feels she made the safest call for her son's welfare.

According to a recent Syracuse University study, people with intellectual and developmental disabilities are four times more likely to contract COVID-19, and twice as likely to die from it.

"It's Carol's greatest fear that her son gets sick," Craig explained, adding that as COVID-19 began spreading, families of children with special needs had to decide between keeping their child in a group home and not being allowed to visit or bringing their children home to take on their care.

Harriet Traversa's son, Sal, 49, also has autism. The Long Island mother decided to bring Sal home from his group home at the start of the pandemic, to live with her, her husband and their daughter, Molli.

"The isolation, separation from his family — he's very close to his sister and very close to his mom and dad," Traversa, 80, explained. "It wouldn't have worked. The damage would have been irreparable."

Sal said he misses his group home, but is happy to be with his family.

Tibi Guzman, executive director of the Arc Westchester, said her staff is so dedicated to the people they care for that many have chosen to to live in the facility during the pandemic, not returning to their own families out of a desire to minimize the spread of the virus and keep everyone healthy.

But facilities like the Arc are underfunded for the pandemic, with most employees making just above minimum wage.

"The public needs to understand what is happening with the system," said Guzman, "because the funds are not enough."

A stimulus bill passed by the House of Representatives includes roughly $10 to 15 billion in funding for Medicaid home and community-based services like the Arc.

"The bill recognizes the support staff as essential workers, opening them up to hazard pay and critical personal protective equipment," Craig explained, adding that movement on the bill may not be seen until later this summer.

But Guzman says her organization is running low on PPE and has exhausted most of their funding.

The bill also includes stimulus checks for people like Brendan and Sal, but in the meantime, O'Leary says because her son is registered as a dependent, he did not receive a check.

"I would have signed it over and let them buy the extra food, the PPE or whatever else went in the budget," said O'Leary.