ADVOCATES SPEAK OUT ABOUT COVID-19 VACCINE AND THE I/DD COMMUNITY

THE NATIONAL ASSOCIATION OF COUNCILS ON DEVELOPMENTAL DISABILITIES

While the world is abuzz with the excitement of having multiple COVID-19 vaccines available in many countries, some people are still struggling with the important decision of whether or not to get the vaccine. For many people with disabilities, including intellectual and developmental disabilities (I/DD), they and their families or caregivers may be feeling anxious or unsure about the vaccine and its safety.

SAFETY FIRST: The amazing global investment and world-wide collaboration that helped us to reach this milestone faster does not lessen the safety or efficacy of this vaccine.

The National Association of Councils on Developmental Disabilities (NACDD), a national nonprofit organization in the United States began hearing from their member Councils in the states that there was a great deal of fear, mistrust, and anxiety over the vaccine. When NACDD learned from the National Alliance of Direct Support Professionals (NADSP) that only 50% of DSPs were indicating that they would get the vaccine, the NACDD knew that action needed to be taken. NACDD led outreach efforts and is launching a vaccine awareness campaign that is aimed at helping people understand the facts about the vaccine and its safety.

On the direct advocacy front, NACDD has been working across the country and the U.S Territories to ensure that vaccines are available for all, and that people with I/DD are on the priority list where they live to get an appointment.

"We have learned from people with I/DD and their caregivers that they want to hear from people in their own communities – who look like them – that it is safe to get the vaccine," said Donna Meltzer, CEO of the NACDD. "Look like they include seeing people with I/DD who have safely gotten the vaccine as well as people with disabilities who are BIPOC – Black, Indigenous, and People of Color." At NACDD, we have identified individuals with I/DD, family members and caregivers who are willing to talk about their decision to get the vaccine and their experience receiving the vaccine in order to help others." On February 17, 2021, four of these individuals came together over a virtual platform to speak with approximately 300 people across the U.S. and its territories about why they are choosing to be vaccinated. This discussion helped inform NACDD as they launch their "Get Out the Vaccine" campaign to provide personal stories and reliable information on vaccine safety.

LIVING WITH I/DD AND MAKING A VACCINE CHOICE BASED ON SAFETY

BASED ON SAFETY Emmanuel Jenkins is a counselor and business owner. He also works for the Delaware Developmental Disabilities Council, a member of NACDD. Emmanuel, a Black man with cerebral palsy, has personal experience with making the decision about the COVID-19 vaccine. He followed the rollout of the vaccine in his home state, and initially was firmly set against getting vaccinated due to lack of trust. He sought out information and trusted sources. "The first thing that really made me consider it was being a person that lives independently. In order for me to get community-based services, people had to come in and help me out to do those daily living things. So, really realizing that, as I protect myself, then I am also protecting my son who just turned 13. I am protecting my wife who is very active in the community."

Emmanuel made this decision to seek the vaccine, and his view was not just about helping his family and community but being empowered in his own decision. "I also like to say, being born with cerebral palsy, I am now 37, how dare I let a pandemic, that's only been around for a year, control my life when I have been able to come at this life and live to the best of my ability with cerebral palsy. So, if cerebral palsy is not going to take me out, I refuse to let a pandemic, or a virus do the same. I will be thankful because I am protecting this generation but also generations that is going to come after me."

Elizabeth Joseph is a board member of the Alaska Developmental Disabilities Council, also an NACDD member. She shared some of the same concerns and initial hesitancy about getting the vaccine. She saw a lot of conflicting information on social media, so she started connecting with physicians she trusted to get information. "I learned how safe it was, and asking questions really helped me a lot. I grew more confident and comfortable with receiving the vaccination. It was my choice to receive it. For my children and for my family, especially my uncle, who is an elder in our Yup'ik (Native Alaskan) community and he requires assistance in filling out forms and translation of mail he receives, he only speaks Yup'ik and I am full Yup'ik."

Elizabeth's family was inspired to get the vaccine as well, when it became available. Relying on trusted information and family helped her make her decision. "During the time we waited to get the vaccine to be released, I found myself scared at times and having second thoughts about getting the vaccine. Social media and people voicing their opinions, but found my peace from my mom who is an elder and my mentor would reassure me and said, give it all to God, if this is his will believe and have faith that he sent this vaccine, and to those people who made these vaccines."

HEALTH CARE LEADERS SHARING THEIR PERSPECTIVE

Dr. Rick Rader is the National Medical Director for the NADSP, the National Alliance for Direct Support Professionals. COVID-19 has affected Dr. Rader's work, but also his personal life as he tested positive for COVID-19 and then later got vaccinated. Rick knows how important DSPs are to the I/DD community, and he champions the need for more awareness for DSPs, those they care for, and their own families. While vaccines are not new, there are some questions that people have about the COVID-19 vaccines. Dr. Rader believes that seeking reliable information is critical to dispelling myths about the safety of the vaccines and their development. "I like to use this example of getting your car registered at the motor vehicle department. The entire process takes about five minutes, but you could be waiting in line for hours.

Now, imagine if instead of five clerks, they had 50 clerks, your time would be cut to five minutes or less. And that was the same idea adopted by the FDA, the Food and Drug Administration, which is the federal agency responsible for testing not only vaccines, but all new medications to make sure they are not only safe but also efficacious, meaning that they work." As we look to the future when enough people are vaccinated to provide community immunity, or herd immunity, we can move past the pandemic. Everyone making an informed decision is important for this to happen. "I like to remind DSPs, that at the end of the day, the end of the shift, they go home. They go to a family that is counting on them for their support, for their financial contributions but also their healthcare as well. When a DSP is vaccinated, they are not only protecting themselves and the individuals they support during the shift but certainly the families that are waiting for them at home."

Karyne Jones is President and CEO of the National Caucus on Black Aging (NCBA). She has been working to build confidence in the safety of a vaccine for people considering the COVID-19 vaccination. NCBA was engaged in the vaccine development, helping to recruit study participants and working to ensure diversity in the clinical trials. NCBA worked with agency leaders to follow the development of the vaccine, its safety, and are now working to make sure the vaccine is equitably distributed. NCBA has been working with many other partners and coalitions, joining together to make sure that people feel comfortable and confident in getting the vaccine.

Karyne added, "I have gotten my first one, I get my second one next week. I am looking forward to getting that second one, which even then, I will still have to wear my mask, practice safety, stay six feet away, but I will have protection." "If there is any good news out of this, it has certainly put a light on some of the health issues and health equity issues that we face. We have been talking about the social determinants for 50 years at NCBA and trying to address them and bring light to that. COVID has certainly brought that to light, that we know there is health inequity in this country, and the discrimination that goes on with access to that. The good news is, we have a vaccine now, that that will help us in this process, and that we all can value human life and move forward and become a better society."

MOVING FORWARD

As vaccine rollout continues around the world, it is important to get accurate information about its safety out and to address the concerns that make some people hesitant to get the vaccine. There was an amazing global investment and partnerships that helped bring us safe options in record time. It is important to recognize that such world-wide collaboration is one of several factors that has helped us to reach this milestone faster, but it does not lessen the safety or efficacy of this vaccine. The I/DD community, like many others, has been anxious to get back to their friends, families, schools, or workplace to once again enjoy life in the community. It is important for people with I/DD to be a priority for access, and they should look to reliable sources to help build trust and motivation to seek the vaccine in their area. As NACDD launches its "Get Out the Vaccine" campaign, they urge everyone to join in so that together, everyone can once again participate fully in our communities. •

ABOUT THE THE NATIONAL ASSOCIATION OF COUNCILS ON DEVELOPMENTAL DISABILITIES (NACDD)

The National Association of Councils on Developmental Disabilities (NACDD) is a national non-profit organization that supports the nation's 56 governor-appointed Developmental Disabilities Councils that work within state government to promote independence, productivity, and integration of people with disabilities through systems change activities.Visit nacdd.org