A new routine: Adults with intellectual and developmental disabilities find support remotely


Before the COVID-19 pandemic, Ilene Erskine, a 60-year-old Belchertown resident, had been attending BakuCare — an adult day health center in Hadley for people with disabilities as well as seniors — for the past two-and-a-half years, after suffering from a stroke that left her disabled. She said the care center was her lifeline.

It took her seven months to recover from her stroke, she explained. Erskine needed to relearn how to walk, talk and eat during that time. She still uses a walker for mobility.

“I was basically home, doing absolutely nothing, bored — and BakuCare saved my life,” she said. “Otherwise, I would have probably become so obese. The year I stayed at home, I gained 70 pounds.”

Erskine, who lives at home with her husband, said she would socialize by playing games like Bingo, exercising and going on field trips while attending BakuCare in the mornings and afternoons.

But now that BakuCare is closed due to the pandemic, she’s unable to participate in these social activities that get her out of the house.

“I look forward to getting up, taking a shower, going to a day program, being entertained, being fed and then going home,” she said. “It gives me an outlet.”

For adults with intellectual and developmental disabilities in the Pioneer Valley, day programs, activities and other services can provide necessary structure and community support.

And with physical locations closed, caregivers and support staff are rising to meet the challenges of providing some stability during the pandemic with daily phone call check-ins and online group activities.

Coralie Donohue, a 54-year-old resident of Northampton who has a genetic disorder called Triple X syndrome, is out of work right now. She normally works at Riverside Industries’ Cottage Street Cafe in Easthampton. Riverside is an organization that provides local job opportunities for adults with disabilities through its own businesses and connecting clients with other local businesses.

Donohue, who at the cafe runs the cash register and makes sandwiches in the kitchen, said she has been thinking a lot about when she’ll be able to return to work, but she is more worried about contracting the novel coronavirus.

Coralie Donohue talks about how much she misses her friends where she works at the Riverside Cafe and art classes that she can no longer go to. She try’s to stay in touch through Zoom but was frustrated with the technology after not being able to join in a meeting earlier that day. Friday, May 1, 2020.

“I’m just so afraid to get this deadly virus, with my immune system being low and my age. I don’t want to get this virus and be quarantined for two weeks and then on top of that be in the hospital. My family won’t be able to see me,” she said, adding that she lives with her fiance.

Kyle Cindy Schaller, director of community-based day services at Riverside, said Donohue isn’t alone — many of the organization’s clients and workers with disabilities have compromised immune systems or other health issues.

Schaller said Riverside staff have been figuring out ways to change their services to meet the needs of clients while safely socially distancing.

Among the adults who Riverside Industries supports, about 80 people were employed pre-pandemic in various jobs in dining, lawn care or laundry services at area colleges (including the University of Massachusetts Amherst, Westfield State University and Amherst College) as well as at local businesses such as grocery stores.

“Most of those people are currently not working,” Schaller said. “They are missing that and that community connection and that way that they contribute and have purpose, just like many people who find themselves with work on a hiatus right now.”

Riverside Industries also owns its own businesses — which employ people with disabilities as well as other area residents — including a packaging company, Liberty Street Packaging, and an outdoor lawn care company, Riverside Lawn Crew, Schaller said.

Most of those clients are still receiving their paychecks via the federal Payroll Protection Program, said Susan Lapointe, director of development and community relations at the organization.

“Those who aren’t receiving a paycheck, we have been working with them and their families to file for unemployment just like others are,” Lapointe said.

Missing in-person support

Kimberly Johnson, a 59-year-old BakuCare participant who has neuropathy and uses a walker, has been attending the care center for the past five years.

“I really miss BakuCare because that’s one of my support systems,” she said.

Since BakuCare closed in March, Johnson, who lives in Northampton, said she has been finding it difficult not to have the day-to-day, in-person support system, but she has been keeping in touch with BakuCare staff through a telehealth program.

“I have a friend that I call every day,” Johnson said. “We’re just trying to keep up with everything. I’m missing her.”

Johnson added that she’s worried about contracting COVID-19 as she is diabetic.

Pat Ononibaku, director of BakuCare, said she and her staff have been providing alternative care coordination through remote services.

“With the closure of BakuCare, we’re still interacting with our participants, but we’re doing it in a different way,” she said. “Basically, what my staff and myself will do is call and check on them.”

Ononibaku and her staff ask participants daily whether they have any COVID-19 symptoms, she added. They also ask participants if they are receiving their medication; if they have food; what their financial situation is currently like; how their grooming, sleeping and eating habits have been; and how they are spending their day.

Participants sometimes “bring up issues about the news on TV,” Ononibaku said. “We try to reassure them over the phone that we’re all in this together and that things will eventually calm down.”

ServiceNet, a network of mental health and human services throughout western Massachusetts and Worcester County, has been using digital mediums to connect its clients with other members of its community.

Mike Menard-Weibel, clinical director for developmental and brain injury services at ServiceNet, said that, in March, the organization started shifting gears to engage clients during the day when normally they’d be at work or involved with in-person programs.

For many clients, “having a daily or weekly rhythm to their lives” is important to their stability, Menard-Weibel said. “Without that, we kind of have to create new ways of establishing stability and routines in their lives. Some people need really intensive support where we schedule their whole day for them.”

He added that since the pandemic started, ServiceNet’s enrichment center in Chicopee has become a virtual hub that includes full days of online programming.

“Every day, we offer different activities that engage the individual, teach them new skills, teach them relaxation skills, self-soothing skills,” Menard-Weibel said. “We do an expressive art hour. We do a pet therapy hour, and that’s all been hugely popular with the folks.”

Although originally the enrichment center was a support for adults with brain injuries, it has been expanded online since March to allow any ServiceNet client — particularly adults with developmental disabilities and autism — to participate in online events, he said.

“One of the best aspects of this is that all the folks join from their homes, and they get to see the people that they typically see every day, Monday through Friday,” he added. “They just love being able to see their friends and colleagues.”

Cheryl Denniston, operations director for developmental and brain injury services at ServiceNet, oversees eight group homes, mostly in Hampshire County.

One of the homes she oversees includes four women who have severe forms of autism and “are used to going to day programs,” she said. They don’t understand why the public health crisis “has been going on for so long” or why their normal routines “suddenly, abruptly stopped,” she said.

Individuals in other ServiceNet group homes are used to leading more independent lives, going grocery shopping and being out in public on a daily basis. The agency is looking to create new routines for them as well.

In one home, for example, a resident started a weight-loss group “literally a week or two before this all happened,” Denniston said, referencing the pandemic. “She was really motivated and all excited about it. And then, wind out of your sails.”

The weight-loss group had to stop meeting in person due to social distancing protocols. So now, “one of the things she’s doing is walking daily in her neighborhood, social distancing,” said Denniston, who noted that staff is helping her reach her goal however they can. “We’re trying to be mindful … in helping her make better choices.”

Chris Goudreau can be reached at [email protected]
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