25 Investigates: As post-COVID-19 life resumes, people with disabilities are left behind

More than two years after COVID-19 shut down programs for adults with disabilities, many are still dealing with limited or no access to essential services, 25 Investigates found.

“I love seeing all my friends, so I’ve been moping around because I miss them,” said Jillian Mancuso, who has Down syndrome and lives with her sister and brother-in-law in Billerica.

Before COVID-19, Jillian attended an in-person day program five days a week. She was out of the house learning life skills and interacting with peers.

“There are times she can’t get on Zoom. I’m on a call, he’s on a call and I’m like ‘Jillian, you’re going to have to miss the Zoom,’” said Jacqui Davis, Jillian’s sister, who has been forced to work from home to care for her sister who receives most services remotely at home. Since March 2020, most of her exercise, activity and socialization comes via her tablet.

“It’s devastating to me how much she has lost in terms of her social, emotional, physical and mental [well-being]. She’s now in therapy two times a week,” said Jacqui.

Jillian is enrolled at Communitas in Woburn.

CEO Paul Cote told 25 Investigates the agency is operating at half capacity due to a staffing shortage. In an email he writes: “Day Programs today are operating at approximately 40 to 50% of their pre-COVID in-person capacities. Up until September 2021 it was COVID Safety protocols that limited the in-person capacities of these programs due to the need to maintain social distancing etcetera. Since then, it has been the critical shortage of direct care staff (generally referred to as the workforce crisis) that is now limiting the number of people we can serve in-person. For example, we now serve approximately 40 to 50 individuals in-person at each of our 3 Day Program locations, whereas pre-March 2020 we were able to serve 80 to 90 people in-person daily in each of those programs. As a result, most of the individuals not being served in-person, on-site are being served through 3-hour ZOOM Classes each week day. If we were able to hire all of our vacant positions, we would be able to return to full capacity. Until we are able to hire the necessary staff, we are simply not able to serve the full number of individuals that want and deserve to be served.”

Approximately 7,000 adults with disabilities in Massachusetts have limited or no services, according to the Association for Developmentally Disabled Providers (ADDP).

25 Investigates heard from several families whose disabled loved ones are struggling to get essential services.

Renee Earnest says the wait for space at a day program for her son Chris has been “beyond hard and devastating.” Samantha Lee’s mother says her daughter has “lost many of the daily life skills that typical adults often take for granted due to not being back at her program.” Matt Simmons’ family writes: “Our son, like many others with disabilities, don’t understand why their routine has changed.”

“I think sometimes the public is surprised that their neighbor isn’t automatically served when they graduate high school, right? I don’t think they know about this crisis,” said Leo Sarkissian, Executive Director of The Arc of Massachusetts, an organization that advocates for people with disabilities.

He says it takes a special kind of person to work in this field and there’s simply not enough of them.

He says there was a staffing crunch before the pandemic and the national labor shortage has only made it worse.

Complicating matters are the low wages disability care workers earn. Entry level pay is about $17 an hour, making candidates look elsewhere for better pay.

“I think we have to pay, at the very least, direct support workforce at $20 and change an hour. This is the third highest cost of living state in the country. We have to come to grips with that,” he said.

Human services agencies are primarily funded by the State with tax dollars.

The Arc says an additional $51 million dollars is needed in next year’s proposed state budget just to get adult day and work programs running at 85% capacity, and hundreds of millions more are needed across human services to recruit and retain workers.

Meanwhile, Jillian’s sister, Jacqui, says more help is needed and fast.

“We need to help people with disabilities that can’t help themselves,” she said.

As the world continues moving forward past COVID-19, she fears Jillian, a social and friendly individual by nature, will only fall further behind.

25 Investigates shared Jillian’s story with State Senator Adam Gomez, chair of the Committee on Children, Families and Persons with Disabilities. His office did not respond to our request for an on-camera interview but in a statement called Jillian’s story troubling.

He says he plans “to go through the appropriate channels to learn more about this and how it can be remedied so that others don’t have to experience the same.”

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