By Donna Meltzer, NACDD CEO
Despite strong efforts across the nation, too many Americans — including people with I/DD, their families and their caregivers — either remain hesitant or are experiencing barriers that keep them from getting the COVID-19 vaccine.
Low vaccination rates have a significant impact on the people we serve at the NACDD. Individuals with I/DD have been living at high risk since the pandemic began. Because so many of these individuals manage co-occurring conditions, this vaccine could save lives — but only if we can get factual information and support into their communities to improve vaccination rates.
Getting factual vaccine information into the I/DD community
When the COVID-19 vaccine was first introduced, there weren’t a lot of materials that spoke to its safety for individuals with I/DD. To build vaccine confidence, we surveyed our DD Councils and reviewed surveys by other partners such as the American Association on Health & Disability to better understand hesitations. The results showed us that most people want to hear from individuals who look like them before making the decision to get vaccinated. This includes not just hearing from individuals with disabilities, but specifically people with disabilities who are also Black, Hispanic, American Indian and Alaska Native (AIAN).
With this in mind, we launched our Get Out the Vaccine campaign, which provides factual, vetted information to individuals with I/DD, their families and their caregivers. We partnered with the Centers for Disease Control and Prevention (CDC), the U.S. Food and Drug Administration (FDA), and other trusted resources to offer science-based research that answers common vaccine questions. The campaign uniquely features people who have already made the decision to get vaccinated, including individuals with I/DD, direct support professionals (DSPs), caregivers and others who have high contact with individuals with I/DD.
Individuals with I/DD often require care in their home, which increases their exposure to the virus. Anecdotal data suggests that close to half of DSPs are hesitant to get the vaccine for a variety of reasons, including feeling that they are immune because they have already tested positive for COVID-19, cultural or family beliefs, lack of trust in the government and a lack of trust in the vaccine’s emergency use authorization. Our partnership with the National Alliance for Direct Support Professionals helped us identify barriers that have kept these professionals from getting vaccinated. Because many DSPs are immigrants, it’s important that we improve access to culturally sensitive research and information in a wide range of languages to help this critical support system learn more about the vaccine.
Partnerships strengthen vaccine campaign
We have established our Get Out the Vaccine campaign as a trusted place for people in and supporting the I/DD community to learn about the COVID-19 vaccine. This is due in large part to the strong partners promoting the campaign, including the Administration for Community Living (ACL), the CDC and the White House. Our partnership with the White House connected us with the Made to Save campaign, a national campaign focused on local activities (e.g., popup vaccine clinics) that are breaking down barriers to help people get vaccinated.
A large focus of our Get Out the Vaccine campaign is highlighting intersectionality. For example, a person with an I/DD might also identify as Black, Indigenous or a person of color (BIPOC), which often means they have additional barriers or concerns that have prevented them from getting in line for the vaccine. The campaign aims to address these concerns, while the Made to Save campaign helps people take the next step by providing easy access to vaccine events.
Managed care plays a large role in protecting I/DD populations
Our DD Councils work with UnitedHealthcare Community & State and other managed care organizations (MCOs) across the nation to help individuals with I/DD enroll in Medicaid waivers to get the care they require. We all witnessed the unfortunate rise of deaths in institutional settings at the beginning of the pandemic. MCOs make it possible for many of the people we serve to live in a setting of their choosing in their community, ultimately avoiding similar tragedies and helping individuals live a more self-determined life.
Since the rollout of the COVID-19 vaccine, MCOs have also been instrumental in getting information out about the vaccine and bringing the vaccine into communities. As COVID-19 vaccines are developed for children as young as two, our collaborations with MCOs will grow in importance as we find new ways to communicate with parents of children with I/DD, many of whom will want to discuss the vaccine’s safety and efficacy with their child’s care provider.
We couldn’t have launched this campaign without our strong partnership with UnitedHealthcare Community & State. They have helped connect us with individuals to feature in the campaign, and the team’s support has helped us raise awareness to gain new, influential partnerships. At the end of the day, we want individuals in the I/DD community to choose whether to get vaccinated based on what is best for their health — but first, we want them to have access to all of the facts.