Objective: This article summarizes the individual, systemic, and collective challenges and opportunities presented by the COVID-19 pandemic, based on 16 videos solicited by the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) and submitted by NCAPPS collaborators during the first six months of the pandemic.
Method: Informed by participatory action approaches and content analysis, we describe common themes in a series of 16 videos solicited by NCAPPS from subject matter experts with professional and lived experience of disability and human services systems.
Results: The team organized the findings to identify both specific factors within each of the levels and the complex interplay between each of the factors at four levels: (1) individual disabled people and their/our spouses, family, and friends; (2) person-centered strategies; (3) system, services, and providers; and (4) society.
Discussion: Practices such as person-centered planning, peer support, and self-direction enable us to respond to and cope with the traumas caused by the pandemic. Systems-level themes reveal clear opportunities for abandoning outdated practices and rebuilding the service system in a more person-centered manner. Commentators argued that a society that strives for collective responsibility and well-being and leaves no one behind will generate the interdependence necessary to weather disasters like the COVID-19 pandemic.
Conclusion: Person-centered practices are both an anchor for weathering the pandemic and a beacon for rebuilding lives, service systems, and communities.
Plain Language Summary
COVID-19 is a new virus that has changed all of our lives. It has been especially challenging for people with disabilities. The National Center on Advancing Person-Centered Practices and Systems or NCAPPS is a group of people who help everyone to live their lives the way they want to. To be person-centered means that nothing is done to or for a person without their permission.
The National Center on Advancing Person-Centered Practices and Systems or NCAPPS asked their community members to share how important it is for all of us to be person-centered during this time of COVID-19. Sixteen people shared their thoughts and experiences by recording their own short video. The 16 people were all different. Some were people using services, some were people who provide services, and some were researchers. Each person made a short video that is now on the NCAPPS website, YouTube channel and Facebook page. You can find these videos when you search for “NCAPPS Pandemic Wisdom.”
NCAPPS wanted to share what they have learned from those sixteen videos with everyone. NCAPPS worked with some of the people who shared their thoughts in the video to summarize and organize main ideas. Here are the big four themes:
- The challenges we face because of COVID-19
- How we can use person-centered practices to get through these hard times
- How we can help each other make good decisions and take care of each other
- What we can do as a community to work together to get through COVID-19, and make positive changes
NCAPPS believes that being person-centered is more important now than in any other time. NCAPPS hopes that people with disabilities and those who support them will continue working together through COVID-19. Working together to make sure we all are being person-centered will guide us to get through this difficult time safely.
Bailey, Connor; Barbone, Martha; Brown, Lydia X.Z.; Bonardi, Alixe; Croft, Bevin; Frattarola-Saulino, Marian; Harvey, Karyn; Kwak, Miso; Lang, Kelly; LeBlanc, Nicole; Reynolds, Michelle C.; and Starr, Carole
"Person-Centered Practice as Anchor and Beacon: Pandemic Wisdom from the NCAPPS Community,"
Developmental Disabilities Network Journal: Vol. 1:
2, Article 16.
Available at: https://digitalcommons.usu.edu/ddnj/vol1/iss2/16