I hosted a Zoom for members of my journalistic community. Here’s what I learned.

I’m Jacqueline Neber, an Engagement Journalism graduate student at the Craig Newmark Graduate School of Journalism at CUNY. As I’ve written in the past, my brother Matt has autism and a visual impairment. For 25 years he has let me into his world and shaped my journalistic and community goals, which have been solidified by my time at Newmark so far. Over the course of my M.A., I’m investigating whether New York City group homes for adults with intellectual and developmental disabilities are safe and fulfilling environments. Part of that investigation is asking community members about their experience in homes during the COVID-19 pandemic.

My second semester advanced reporting class culminated in a community collaboration with members of the New York Alliance for Developmental Disabilities (NYADD) Facebook group. NYADD has been a fantastic way to find family sources and then connect with group home residents, helping me reach my goal of centering disabled peoples’ voices in my reporting. I’ve been speaking with family members of people with I/DD, and then their loved ones in homes, for the past nine months. These conversations have not been for any particular story—just for getting a lay of the land, figuring out how group homes operate and the frustrations people have. I’ve also talked to advocates, people at the state’s Office for People with Developmental Disabilities (OPWDD), and other community groups.

For this community project, I knew I wanted to host a community Zoom session to get people talking to me—and each other—about what group home residents need most at this stage in the pandemic. I posted in the NYADD group, reintroduced myself, linked to my previous Medium posts describing my work, and asked people to like my post if they were interested in joining the Zoom. After getting responses, I got everyone’s emails, organized a Zoom, and followed up over email and in subsequent NYADD posts. The whole Facebook group and their loved ones were invited to participate.

Because of scheduling conflicts, only four people could come to the Zoom, which I held on Friday, May 14. The participants represented a good cross section of people in NYADD. They included one source I’ve been speaking with for months and three I’ve never met. Their loved ones have intellectual and developmental disabilities and live in group homes across the state. I wanted to get residents on the Zoom, but instead came up with a plan for getting information to them after the Zoom.

I asked participants: What do your loved ones need most? Here’s what they said.

Residents need to get back into their communities. Day habilitation and community involvement is “up in the air” right now, but it’s essential.

One participant’s sister, who has dementia, most needs to be kept safe in her group home.

Participants advocated for more regular opportunities for their loved ones to leave their residences—especially to just get outside, or to come home and visit family—at this stage in the pandemic.

Participants were able to compare experiences over the course of the Zoom. During the meeting, I collected emails and then sent follow-up questions:

1. How would you rate group homes’ communicativeness with residents and families? Do you feel like you consistently know what is going on with your loved one?

2. How do you communicate with your loved one? How do they tell you what they need or want?

3. Is it difficult to build community between parents and siblings of loved one with I/DD? What might help?

4. How would you rate OPWDD’s communication with residents/families?

5. What do you think is most important for journalists to do when covering the I/DD community?

Everyone’s answers are coming into my inbox now. After the Zoom, I’ve also had phone calls with people who couldn’t make the group meeting, listening to their stories and asking to be contacted with their loved ones. I’ve gotten contact information for one resident so far, who will be a big part of my community work going forward.

My next steps involve getting essential information out to residents. Since the Zoom participants gave me very different information and experiences, and I want my work to center residents’ voices, the info I give to residents will simply be the opportunity to talk to me. I’m going to talk to the residents and families I know now, figure out how to best disseminate information (paper flyers? emails? phone calls?) and begin building ways to talk to more residents. Stay tuned for more!

Have a question or a tip? Am I doing something right, or totally wrong? Tell me everything! You can reach me on social media at @jacquineber, email me at jacqueline.neber15@journalism.cuny.edu, or comment here. I am so looking forward to working with you.