COVID-19 Stories
Understanding Impact through Stories: Partnering with People with Disabilities during COVID-19

Coming together

Through established, trusted networks, people with disabilities have navigated this challenging time. Yet people with disabilities continue to confront many inequities in access to COVID-related services and basic needs, and more work must be done at all levels to ensure equity and access. The needs of Minnesotans with disabilities during the pandemic are nuanced and complex, so the solutions must be as well.

At MDH, a team was brought together early in the pandemic to serve as internal advocates and connectors for Minnesotans with disabilities during COVID-19. Ann Schulte, Lisa Gemlo, and Mai Thor lead the People with Disabilities Team within the Cultural, Faith, and Disability Communities Branch at MDH. Since March, they have collaborated across the branch and MDH overall on creating guidance, building a resources page on the MDH website (Disabilities and Unique Health Needs During the COVID-19 Pandemic), convening a community advisory board, and onboarding community contractors. In partnership with the Minnesota Consortium for Citizens with Disabilities, the team holds monthly Let’s Talk Virtual Forums that are open to the public, providing an opportunity for community members to directly engage with MDH about the needs of people with disabilities during the pandemic. This two-way communication platform is essential to making sure the public has the most up-to-date information and to keep MDH alert to the priorities and concerns of community members.

One of the team’s main objectives has been to build accessibility into all aspects of the MDH COVID-19 response rather than serving as the only advocates within the agency. “The goal isn’t for us to be the experts,” explained Lisa Gemlo. Her goal is for MDH to increasingly weave accessibility into all programs to better serve Minnesotans with disabilities.

Disability COVID-19 Community Coordinators

Connections with a variety of partners have been essential in this work. Local organizations and community advocates became collaborators in identifying the issues in the community and proposing solutions to address the onslaught of pandemic-related needs people were facing. Collaboration with community partners accelerated in fall 2020 when MDH joined with the Department of Employment and Economic Development (DEED) to support several COVID-19 Community Coordinators (CCCs) serving disability communities. The CCCs connect Minnesotans with disabilities to COVID-19 testing, vaccination, and resources. These community-based organizations are uniquely positioned to address people’s needs in real time because of their longstanding trust and experience with the communities they serve.

Stories from the community

Kim Edelman, a former member of the MDH People with Disabilities Team, noted that because there is very little data collected on the impact of COVID-19 on people with disabilities, “The most important part is sharing the stories of people with disabilities.” Some CCC partner organizations share their stories here.

Empowering individuals' choices

The Southeastern Minnesota Center for Independent Living (SEMCIL) has worked to address community members’ urgent needs. They recently connected with a Minnesotan with a disability experiencing housing insecurity who was staying in a friend’s boat on the Mississippi River. She didn’t have the resources to keep the boat warm but did not want to move to a warming center because of fear of exposure to COVID-19. The SEMCIL team encouraged her to share what she needed to ensure her safety in her current living situation. “[As] she was almost out of wood, SEMCIL purchased a cord of wood that she feels will get her through the winter, [along with] two wool blankets, wool socks, hand and foot warmers, a windproof facemask with ear flaps, hat and neck warmer, heated rechargeable gloves, and a vest.” SEMCIL was able to rapidly meet the needs of the community member without prescribing what was best for her. Although this intervention provided much needed relief to an individual, the systemic issue of housing insecurity during the COVID-19 pandemic remains.

Crucial connections

Independent Lifestyles, a COVID-19 Community Coordinator organization serving the St. Cloud area and beyond, has expanded their efforts to serve their community during this time. “Here at Independent Lifestyles, we have become extremely aware of how this pandemic has disrupted the lives of people with disabilities,” said coordinator Rachel Ruff. “One of the most impactful experiences from this contract has been the community connection and outreach we have been able to offer. To see the faces of our consumers once receiving our PPE packages was not only heart-warming, but moving. The small act of kindness by simply speaking to our consumers over the phone and asking what their needs currently are has been also extremely impactful and essential.” Making personal protective equipment available to people all over the state continues to be a challenge, especially for people who already experience isolation.

Making technology accessible

Lighthouse for Vital Living has been providing a “Tech to Connect” program to ensure that people with disabilities have access to the technology they need during the pandemic for school, telehealth, and connecting with support systems. Recently they worked to provide wifi to a parent so that she could have a video call with her child. This service has also allowed people to schedule grocery deliveries and COVID-19 testing appointments. The needs during the pandemic unfortunately outpace the organization’s ability to provide access to wifi, particularly in Greater Minnesota where reliable internet is more scarce.

Looking ahead

Moving into 2021, the People with Disabilities Team and their contractors remain busy. With COVID-19 vaccines becoming available, they are working to ensure that vaccines are accessible to people with disabilities. On a recent Let’s Talk forum, the MDH team and community participants exchanged ideas and information about vaccine allocation and planning. Ann Schulte hopes that MDH can apply the many lessons learned and insights from testing to vaccination.

Now that CCC lead coordinator Mai Thor has joined the People with Disabilities Team to manage the COVID-19 Community Coordinator contracts, the team hopes to have increased capacity to respond to community needs and be proactive in ensuring accessibility. This investment indicates that a focus on equity for people with disabilities will continue and grow from here. “The good news is that people have been very receptive in general when we bring issues forward,” said Lisa Gemlo. Ann Schulte agreed, explaining that a focus on co-creating people-centered solutions has been essential. The People with Disabilities Team continues to emphasize the value of partnering with the community to help design solutions and break down barriers to accessibility.