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:
- having access to advocate support
- having advocates who can help with collaboration and negotiation with leadership of congregate living facilities
- having access to outside visitors to help with planning
- having access to friends and families
- being personally motivated to live independently
- being mentally and physically prepared for less structured and more self-directed living
- having a shorter stay — it’s easier to transition out the shorter someone has lived in an institutional setting
On the flip side, we heard that some factors that make transitioning more difficult:
- lacking access to people outside of their congregate setting who can act as surrogates for necessary activities such as looking at apartments, buying supplies, etc.
- lacking access to the internet (this is the primary way of doing most things during the pandemic including finding housing, finding a direct support professional, shopping, etc.)
- lacking access to information about resources and procedures
- inability to arrange home and community-based supports
- policies that create stronger funding for institutional care than for home and community-based services
- isolation and disability stigma that reinforce ideas that disabled people cannot live in the community
Here’s what a few participants told us during our workshop:
“There are so many pieces [to this work, like] doing the comparisons and going out and shopping, having a Saturday call to mediate a conversation between a PCA and a consumer, so they don’t end back up in an institution — I mean, these are the things we don’t get to document and tell the Feds we’re doing with our money.”
“[What] I’ve certainly heard and seen over the years is that the longer somebody is in, the harder it is to get them out. Right now, federal funding for transitions that comes through ‘Money Follows the Person’ programs require that a person live in a facility for 90 days before the money can be used to help transition them out. We need to limit that 90 day requirement. In California, we do have a bill right now with a senator Dodd that reduces the requirement to 30 days, and that’s still not ideal, but it’s so much better than the 90.”
“[Transitions] have been made so much easier to get done because we have the CARES Act funding. We’re not waiting for approvals . . . we’re literally able to pay for a caregiver and pay a private agency so that person can get out of the nursing home immediately.”
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
