How Can Health Workers Improve Access to Information in Their Communities?

A South Carolina nonprofit shares how the organization keeps its community’s trust.

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The Washington Post recently reported that the CDC plans to loosen COVID-19 isolation guidelines. Until any changes are announced officially, the agency continues to recommend a five-day isolation period for anyone who tests positive for COVID-19.

For nonprofits and health workers who communicate with the public, changing guidelines can pose challenges to ensuring their communities make informed decisions to get the care they need.

To better understand how those challenges impact people with disabilities, Public Good News spoke to Mary Alex Kopp, vice president and chief public relations officer, and Mandy Halloran, director of public health and disability integration, at Able South Carolina, an organization led by and serving people with disabilities. They talked about how they have evolved to respond to the needs of their community in South Carolina, where one in three adults has a disability, since the COVID-19 pandemic began. 

Here’s what they said.

PGN: What is Able South Carolina’s mission, and how does it relate to public health? 

Mary Alex Kopp: Our mission is to equip people with disabilities with the tools that they need to foster pride and direct their own lives; provide community education that challenges stereotypes and eliminates barriers; and advocate for access, equity, and inclusion. 

That includes at the individual, local, state levels, and even, in some cases, nationally and internationally.

The public health side of our work really came about more strongly with the start of the COVID-19 pandemic, when we saw the disparity in how people with disabilities were gaining access to health care. 

Mandy Halloran: We knew that our community was at high risk to catch COVID-19, be very sick from COVID-19, or die as a result. We face many barriers to access care. 

I’ll give one quick example: We were all using our telephones in the beginning to access information about what was going on in the world. Really, information was driven by technology. 

I have a woman on my team who is blind—and because our department of public health did not have a website that was accessible for the blind and visually impaired—she was not able to do the same things that sighted people did. She couldn’t gather the information from our state on what was going on day to day. She could not schedule her vaccines. So, we have done a lot of advocacy with our department of public health to make those technological formats more accessible.

And then, as things progressed and the vaccine was made available to all of us, we just saw numerous barriers, even more complicated than the one I just explained, especially in disabled communities that are multi-marginalized: Black communities, Hispanic communities, those living in poverty—so many issues to get the vaccine.
So, we developed the South Carolina Disability Vaccine Access Network to get the vaccine to people who would normally face tremendous barriers. It’s a model that we developed and now is being used nationally. Basically, we go to neighborhoods that need it the most—they’re not served by a Walgreens, or a CVS, or a Walmart—and we have mobile clinics. We call them “barrier-free” because we provide as many accommodations for people with disabilities and the entire community that we can possibly think of and pack up in a truck.

That goes from providing drinks and snacks—people don’t consider that accommodation, but it truly is. We have fidget toys, ice packs; we offer gift cards at some of these clinics so that people can get reimbursed for the expense of getting the vaccine. 

It is driven by leaders in the communities that we serve. Able South Carolina could not do it without them.

PGN: How do you prepare for potential changes in CDC guidance regarding COVID-19 isolation recommendations? 

M.A.K.: Any time there is a change to the isolation guidelines—first and foremost from an education standpoint—it is really difficult to get people to continue to take this illness seriously. 

Some of the critics that are speaking out about this potential change in guidance are saying this is the CDC’s attempt to give COVID-19 isolation guidance the same isolation guidance we would give for the flu or RSV. And frankly, it is not the same because we know that COVID-19 is much more severe—especially for folks who are still unvaccinated, for people who are unvaccinated and disabled—and that it can also potentially lead to lifelong disabling conditions like long COVID and the complications that come from that. 

So, it is disconcerting and frustrating for us as an organization to have to continue to hit the drum that even though isolation guidance is changing, that does not mean that the severity of illness is any different or that the reality of it should be treated any differently.

It is not something that we are in support of. 

We believe that the best thing to do is to listen to the disability community who feels people should still wear masks in large public gatherings and settings. Stay home when you’re sick. Test if you feel unwell. Get vaccinated, stay up to date with your vaccines. When the isolation guidance changes, it causes a lot of folks to tend to take all of those other elements for granted.

PGN: The CDC changed the COVID-19 isolation guidelines in 2021, when it reduced the isolation period from 10 to five days. Then, in May of 2023, the federal COVID-19 public health emergency ended. What have you learned from evolving public health guidance? How has your outreach strategy changed?

M.A.K.: The biggest lesson learned is that the education needed for this is never ending. There’s a lot of misinformation and fear around COVID-19 and COVID-19 vaccination and illness that we are very consistently combating. 

We do a lot of that with our online content, whether that’s sending out informational e-blasts to our email list or updating our website. On that website, we have frequently asked questions sections, and we’ve rewritten it in a plain language format that’s easy to follow and understand. 

We also have questions that are more directed to BIPOC communities. Because there’s an additional element for communities that are marginalized through disability and race that may feel a different version of hesitancy than somebody who, say, is white and disabled.

So, even with the public health emergency technically ended at the federal level, it is obviously still felt within our community. There are people who are still getting very sick and dying from this disease. And it’s difficult when these big federal announcements are made because people kind of take that to mean the risk and disease are over, it’s not happening. And we have to provide that continuous education: It’s not over, and it’s especially not over for our community. There are things that you can still do and should still do to protect yourself and your community. 

PGN: As we head into year five of living with COVID-19, what strategies have helped you combat caution-fatigue in your community?

M.H.: Having a team that represents many parts of our community and different disabilities really helps people trust Able South Carolina. 

We’re not going out into these communities and lecturing anybody. That’s one of the tenets of Able South Carolina and of the independent living community, that we offer the very best, the most accessible information and events. And it’s their choice to take it or not. 

M.A.K.: Gaining people’s trust by being open to listening to what they’re afraid of when it comes to vaccination or illness helps us get in the door. We also have learned that people take vaccination and the potential for severity of illness seriously, especially if they know someone who could be impacted.

It’s really not enough to just want to protect yourself, but you know protecting yourself also means that you’re protecting your grandmother who you love dearly, or you’re protecting your child who has a disability, or you’re protecting your coworker who had a heart transplant or your very close friend who’s experiencing cancer. Getting information out to the public in that format and reminding them that the choices they make as individuals impact the folks they care for most around them has continued to be the most impactful way that we reach people.

I think that one of the biggest differences in what we do at Able South Carolina is that we make the materials for our events as accessible as possible. We think of every part of the community and every member of the community. So, folks are able to access our website or our social media. They get image descriptions, plain language so that folks can understand it. It’s accessible to screen readers: anything that we can do to make things more accessible.

M.H.: Having accessible websites and materials is just tremendously inclusive. You’re gonna reach more people who engage with your content if you reach all parts of the community. 

I advise people that might have some oversight on budgeting that there needs to be a budget line item for accessibility. We hear a lot of pushback, “Well, we can’t afford that,” but we really encourage companies, organizations, churches to put that in their budget so it can get done. It’s ongoing; there’s going to be money every year for updates and changes. So, I want to leave you with that charge.

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This article first appeared on Public Good News and is republished here under a Creative Commons license.

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