Two years into the COVID-19 pandemic, the Georgia Council on Developmental Disabilities (GCDD) is still actively collaborating with community partners and funding initiatives to support the developmental disability community throughout the state. Through education, outreach, and opportunity, GCDD is working to keep people with developmental disabilities and their family members informed on important pandemic developments and increase access to COVID-19 vaccines for people with developmental disabilities, their family members, and care network.
State-Wide Collaboration & the Creation of the Georgia Developmental Disability COVID-19 Network
At the start of the COVID-19 pandemic, Georgia public health and developmental disability advocacy organizations recognized that the quickly spreading coronavirus was going to significantly disrupt the lives of people with developmental disabilities. By April 2020, GCDD began to take action and connected with influential organizations focused on developmental disabilities throughout the state to form the Georgia Developmental Disability COVID-19 Network.
“We understood early in the pandemic that COVID-19 was disproportionately impacting people with intellectual and developmental disabilities. It was especially impacting people in group homes and other congregant care facilities,” recounts Mark Crenshaw, Assistant Director of the Center for Leadership in Disability (CLD) in the School of Public Health at Georgia State University (GSU), and GCDD council member.
The Georgia Developmental Disability COVID-19 Network held weekly calls to stay connected, understand community concerns, create and share resources, and disseminate important information to organization constituents. The network started with a collaboration including GCDD, the Georgia Advocacy Office (GAO), Center for Leadership in Disability (CLD) at Georgia State University (GSU), Institute on Human Development and Disability (IHDD) at the University of Georgia (UGA). As the pandemic continued, the network grew to include organizations such as Parent to Parent of Georgia, FOCUS, Arc of Georgia, Pineland BHDD, Spectrum Autism Support, and the Georgia Department of Public Health with support from many local and national expert physicians, public health practitioners, and scientists.
Creating the network made sense because the organizations involved already knew and/or saw the gaps and needs within the developmental disability community; had access to official information and could clarify misinformation; understood the potential of their collective impact; and fit the mission of each organization.
Crenshaw elaborated, “We wanted to do everything we could to stop the rate of people with I/DD and their family members who were getting sick and dying from COVID. We also had a focus on trying to get folks connected to resources to support them in getting through lockdown. The meetings were very topical based on what was going on in people’s lives and what was going on with COVID-19.”
Dana Llyod, Program Director at GAO, and Susanna Miller-Raines, then Operations Coordinator and Community Support Specialist at the Center for Leadership in Disability (CLD) at Georgia State University (GSU)—now Program Manager with Think College at the Institute for Community Inclusion at the University of Massachusetts Boston—were critical leaders in the development of the Georgia Developmental Disability COVID-19 Network.
The calls became a source of resources for network members and community members and resulted in successful collaboration and initiatives.
“Our goal was to create a clear path of easy-to-understand facts and resources from reputable organizations and experts. We did this through general question gathering sessions and subject specific calls to address the most pressing questions and topics,” said Maria Pinkelton, GCDD Public Relations Director.
An email account dedicated for COVID-19 information was created for two-way communication, as well as a COVID-19 resource bank and website. To provide information—and receive feedback from the community—the network offered webinars with experts that provided real-time information and updates regarding COVID-19 and the vaccines.
“Our participants needed understandable facts, experts to talk to, transparency, and safe spaces for conversations and questions,” said Pinkelton.
The pooled efforts and outcomes led to a total of 1686 individuals participating in 30 calls that were organized by 15 disability-focused agencies.
In addition to sharing resources, the network advocated with state agencies and the governor’s office for support for people with developmental disabilities and assisted with communication and logistics for vaccination clinics.
The Georgia Developmental Disability COVID-19 Network is still active and continues to meet twice a month to stay connected, provide organization initiative updates, and strategize for the continued access to pertinent information and outcomes for the developmental disability community. Naomi Williams, GCDD’s COVID-19 Vaccination Project Coordinator, leads the on-going efforts of the network as well as other GCDD COVID-19 vaccination initiatives, including managing grants distributed to support COVID-19 prevention efforts in Georgia for people with developmental disabilities.
Vaccine Access for People with Developmental Disabilities Funding & Grant Initiatives
In late March 2021, President Joe Biden announced national initiatives to increase access to COVID-19 vaccines, including nearly $100 million in grants through the Administration for Community Living (ACL) and the Centers for Disease Control and Prevention (CDC) specifically for people with disabilities and older adults. GCDD had the opportunity to award some of this funding to three organizations to increase vaccinations for people with developmental disabilities and their family members.
While nationally 76% of the population has received at least one dose of the COVID-19 vaccine and 65% are fully vaccinated, Georgia’s vaccination rates are significantly lower with only 65% received at least one dose and 54% fully vaccinated.
Two supported organizations, Benjamin Academy and Just People Inc., worked directly in the community to host vaccine clinics and aid in coordinating vaccine appointments. These were widely successful initiatives and distributed or coordinated a combined 270 doses of the COVID-19 vaccine.
Benjamin Academy, a private school in McDonough, Georgia, that serves students with developmental disabilities, conducted outreach to people with developmental disabilities and their family members and provided education and information on the COVID-19 vaccines and how to access them. Benjamin Academy directly reached out to families at the school, local churches, and rural areas. They also found that word of mouth is an effective tool within their community and network.
In addition to outreach, Benjamin Academy helped people with developmental disabilities who needed assistance finding a location or making an appointment to receive a vaccine and assisted with finding transportation or providing information on locations of drive-in vaccination clinics.
“Life is to be celebrated—we’re in the COVID-19 pandemic—but that still stays true. You can’t stay home until this is over—that’s not realistic. We know that there is additional stress on families who have family members with I/DD. Things in your life shouldn’t stop, but we need to provide the appropriate protection—and education is key,” said Dawn Degal, administrator of Benjamin Academy.
Degal continued, “Now that things are loosening, people are less desperate than they were in December. We are still reminding people ‘Don’t let your guard down, don’t get too comfortable.’ We have to stay mindful about our risks and do what we can to stay safe.”
Just People Inc., a nonprofit in Norcross, Georgia, that provides support services to adults with developmental disabilities, hosted a vaccine clinic that distributed 143 doses of the COVID-19 vaccine, including 88 doses to people with developmental disabilities and 41 doses to family members of people with developmental disabilities. This is the second vaccine clinic that Just People has hosted during the pandemic, and they used lessons learned from their first clinic to ensure people in the waiting and observation rooms were comfortable.
Kelli Ivey, Vice President of Just People, emphasized that despite the difficulties that Just People and the community they serve have faced during the last two years, “We have found the positive in COVID.” Recognizing that there are many things that they learned their members and employees are now able to do. “People who haven’t left the house can use FaceTime and Zoom; we never would have thought it would be possible to provide services this way before COVID.”
Claritas Creative, the third organization supported through grant funding, is developing and sharing bilingual resources on COVID-19 vaccines, filling the gaps in information, and combating misinformation about the COVID-19 vaccines. They are connecting with community-based organizations throughout the state to boost the number vaccinations for people with developmental disabilities and their family members.
Moving Forward Safely with COVID-19 Here to Stay
Despite relaxed restrictions and an increased sense of pre- pandemic normalcy, the COVID-19 pandemic is not over. New waves and variants are expected hit the US again soon. As people become more comfortable going out in their community and socializing in larger groups, it is vital they are aware of the ongoing risks and how to protect themselves from contracting or spreading COVID-19.
Understanding that COVID-19 is here to stay, everyone, especially the developmental disability community, must continue to use prevention as they resume regular daily activities: get the COVID-19 vaccine; wear a mask when around others, especially indoors or in crowded spaces; physically distance whenever possible; and most importantly, stay informed with up-to-date COVID-19 news from reliable sources, like GCDD, the CDC, the Georgia Department of Public Health, and other public health officials.