Transitioning out of a Congregate Setting During the Pandemic

Insights from a Journey Mapping Workshop

By Han Wang and Nikki Zeichner
Workshop and Journey Mapping led by Han Wang

Why did we hold a journey mapping workshop?

With the high risk of Covid-19 exposure in congregate care settings, many individuals with disabilities have been seeking to leave them and move into safer, more independent living situations. However, leaving congregate settings has been very difficult during the pandemic.

During our research, we wanted to understand why. To do this, we brought together advocates who had either successfully gone through the transition out of congregate care or supported someone through this transition. We asked attendees to think of a story of someone that transitioned out of a congregate setting — either someone they helped or else their own personal story. Then one by one, they provided details about the experience from being in the nursing home to moving to independent living. We did this to identify the factors that influence the outcome of a transition. What makes it easier? What makes it more difficult?

A few factors that we learned made these transitions easier were:

On the flip side, we heard that some factors that make transitioning more difficult:

Here’s what a few participants told us during our workshop:

Ultimately, what would make this process easier is building the infrastructure for HCBS and reducing admissions into congregate settings overall.

Thank you to all who participated:

Steven Grammer, disability rights advocate and former nursing home resident
Larry Wanger, Dayle McIntosh Center
Marquita Facen, Dayle McIntosh Center
Christina Mills, California Foundation of Independent Living Centers
Kelly Buckland, National Center for Independent Living, former nursing home resident
Tita Das, Silicon Valley Independent Living Center

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