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| Susan (left), a CSA support facilitator, meets up with Kathy, an essential employee, at the end of a work shift. |
Around the office, Kristoffel van de Burgt has earned the nickname “The King of PPE.” On the other end of a Zoom call, Creative Support Alternatives’ (CSA) director shows why, giving an impromptu tour of a storage room stocked with N-95 masks, face shields, thermometers, cleaners, toilet paper and other ubiquitous necessities of the COVID-19 pandemic.
“Ever since this hit in March, we've been acquiring supplies nonstop to be able to bring them into people's homes,” van de Burgt said. “We've given masks and PPE to all the employees and we've purchased non contact thermometers. We’ve had to be creative with how we acquired this stuff."
For two partially grant-funded community service organizations that operate as part of San Diego State University’s Interwork Institute, the age of coronavirus has been one of adjusting and reinventing themselves on the fly. But for CSA, which provides supported and independent living services to individuals with developmental disabilities in San Diego and California's gold country, and the Exceptional Family Resource Center (EFRC), which serves families of children and adults with disabilities in San Diego and Imperial Counties, their commitment to the people they serve has not wavered.
“We're learning a lot about ourselves as we move forward and shift with these changing times,” said Joyce Clark, EFRC’s co-director who runs the agency's Family Empowerment Program. “The same needs are there, but there are a lot of new needs as well."
The Definition of Essential
Founded in 1992, Creative Support Alternatives embraces the inclusion movement for people with developmental disabilities, providing in-home, person-centered support directly to dozens of individuals. That entails just about anything, including helping them complete household tasks, access stores, figure out finances, interface with government agencies and secure housing and employment and more.
“If you ask what we do, well, it’s anything life requires,” said Mary Ellen Sousa, CSA director and co-founder. “We're in the trenches daily with folks, supporting them to navigate the constant changes COVID has required.”
COVID-19 has made that battle even harder as employers and other support agencies have closed during the pandemic, leaving many people with disabilities few other places to turn. While CSA has moved to provide some support remotely to minimize face-to-face interactions, many whom the agency serve require physical assistance to eat, bathe and get dressed. That means home visits are still happening.
That’s where the cache of PPE comes into play. CSA has created procedures for home visits, including temperature checks for all staff prior to entry. "We are the textbook definition of essential,” van de Burgt said. “We are working to keep people safe ... mentally, physically and in some cases spiritually, helping them access their faith groups. When hope is crashing, mental wellness is crashing. So we've got to keep hope."
“If you ask what we do, well, it’s anything life requires,” said Mary Ellen Sousa, CSA director and co-founder. “We're in the trenches daily with folks, supporting them to navigate the constant changes COVID has required.”
COVID-19 has made that battle even harder as employers and other support agencies have closed during the pandemic, leaving many people with disabilities few other places to turn. While CSA has moved to provide some support remotely to minimize face-to-face interactions, many whom the agency serve require physical assistance to eat, bathe and get dressed. That means home visits are still happening.
That’s where the cache of PPE comes into play. CSA has created procedures for home visits, including temperature checks for all staff prior to entry. "We are the textbook definition of essential,” van de Burgt said. “We are working to keep people safe ... mentally, physically and in some cases spiritually, helping them access their faith groups. When hope is crashing, mental wellness is crashing. So we've got to keep hope."
Going Virtual
Lupe Rojas-Sanchez, EFRC’s co-director who runs the agency's Early Start program for parents of children 0-3, has noticed phone calls with young mothers getting longer lately. The risk of COVID-19 infection has forced women into isolation before and after delivery. That — combined with a diagnosis of a disability for their newborn — has been a recipe for postpartum depression, she says.
"It’s hard to deal with all that isolation even before you add in the component of a child who is born either premature, medically fragile or with a disability,” Rojas-Sanchez said. “Now when we're talking to new moms, we make sure to have that in our minds. We work to provide assistance."
That is just one way in which the pandemic has changed business as usual for EFRC, which offers peer-parent support, information and grassroots advocacy, helping families navigate complex systems and plan for the future. The agency annually serves more than 4,500 parents of children with disabilities ranging from mild learning disabilities to rare syndromes.
Since March, EFRC has shifted all parent trainings, resource events, support groups and committee groups to Zoom. This fall, the agency also hosted a webinar series on topics of interest to parents, even distributing PPE as a virtual door prize.
While she stressed the importance of face-to-face interaction, Clark said the flexibility of their new virtual programming has allowed several clients, whose attendance had been curtailed by life circumstances, to re-engage. Rojas-Sanchez added that Zoom has made it easier to connect parents in remote areas of Imperial County to speciality services, such as speech therapy.
All this has led the agency to consider how to continue its virtual offerings in a post-pandemic world.
“You have to go with the times or you're just going to be stagnant,” Rojas-Sanchez said. “And then who are you going to help?"
“You have to go with the times or you're just going to be stagnant,” Rojas-Sanchez said. “And then who are you going to help?"
