Protecting the Vulnerable: How Public Health Can Better Serve People With Disabilities

ROBERT JOHNSON:
This is Public Health Review. I'm Robert Johnson.

On this episode, state efforts to encourage COVID-19 vaccines among those living with disabilities and a program that provides an expert to lead the charge.

DR. JOSEPH KANTER:
One of the lessons that we've taken, particularly since Katrina, is that vulnerable people are vulnerable. It doesn't matter what the vulnerability, it doesn't matter what the emergency, but vulnerable people are vulnerable in times of emergency and we need to do intentional, deliberate work to help protect them, to help them stay safe in emergencies.

SARA HART WEIR:
Individuals with disabilities come from all aspects of Missouri. They live in our suburban, our rural, and our urban communities.

Some individuals with disabilities can't leave their homes in order to access the vaccine. Some individuals don't have access to transportation. You know, others are living with older adults or older caregivers.

And so, this certainly is a complex situation.

KARA NETT HINKLEY:
The number one reason folks were saying that they didn't want to get vaccinated was because of a real fear around how the vaccine could impact their already-existing health conditions.

JOHNSON:
Welcome to Public Health Review, a podcast brought to you by the Association of State and Territorial Health Officials. With each episode, we explore what health departments are doing to tackle the most pressing public health issues facing our states and territories.

Today, how two states have accelerated their work to reach people living with disabilities during the pandemic, creating partnerships as part of a focused effort to deliver COVID-19 vaccination.

Our guests today are working to find and vaccinate people who've been tough to reach—those living with disabilities. Missouri and Louisiana are among 14 jurisdictions around the U.S., Puerto Rico, and Guam where ASTHO has embedded a disability and preparedness specialist.

Kara Nett Hinkley and Sara Hart Weir are two of those disability and preparedness specialists—Weir in Missouri, Hinkley in Louisiana. Both have deep experience working as advocates for public health. We'll find out about their work and the lessons they've learned since starting their assignments in January. Also, Dr. Joseph Kanter joins us. He's the state health officer and medical director for the Louisiana Department of Health. Like Hinkley and Weir, he too is sold on the program and already has seen positive results for people in his state.

We start there with Dr. Kanter and Kara Nett Hinkley talking about their experiences in the Pelican State.

JOHNSON:
Dr. Kanter, let's start with you. Is it true that people with disabilities are often overlooked during emergencies? It's hard to even imagine, but that's what we hear. What do you think about that?

KANTER:
There's no question about that. And unfortunately, it's something that we know pretty well in Louisiana by virtue of having so many emergencies. You know, most of the time they're weather events and we've gotten quite good at responding.

One of the lessons that we've taken, particularly since Katrina, is that vulnerable people are vulnerable. It doesn't matter what the vulnerability, it doesn't matter what the emergency, but vulnerable people are vulnerable in times of emergency and we need to do intentional, deliberate work to help protect them, to help them stay safe in emergencies.

We saw that during Hurricane Katrina, we've seen that for storms since, and we saw that very much during COVID. Marginalized communities, and particularly people that have vulnerabilities like significant medical comorbidities or disabilities, are vulnerable and they really bore the brunt of this pandemic, particularly during the first few months.

JOHNSON:
So, you have seen that in Louisiana during the last 14 months of COVID?

KANTER:
There's no question about that. They're more likely to suffer complications if they have significant disability or co-morbidities. People with disabilities have up to 10 to 15 times the mortality rate from COVID and they, oftentimes, have less resources to help protect themselves, less control over who comes in and out of their space, less means to put them in a safe environment.

And I think this is something that became painfully clear throughout the pandemic, and there's slowly has been more resources to address this. I think we're all remissed that there were not more resources on the front end to help make a safer environment at the very beginning there.

JOHNSON:
You're not just talking about healthcare resources. You're talking about things like the ability to evacuate during a hurricane or stay at home during a pandemic.

KANTER:
Yes. For the example of COVID, it's to stay at home safely and for those around you to stay at home safely. If you yourself are home-bound, but your in-house caregiver has to go to a job that puts them on the front lines or has to take public transportation to get there, that vulnerability is transferred to you.

And a lot of the mortality, morbidity we've seen in this population happened under the circumstances like that. In the very beginning of the pandemic, there wasn't a great way to get groceries to people who are homebound, to connect with them, to support them, to live safely in their own home without a lot of unnecessary contact. Those types of services have slowly grown. I think it's a safer environment now, but after some very painful sacrifices.

JOHNSON:
Now, we know ASTHO placed 14 disability and preparedness specialists into health agencies around the country to help them make sure people with disabilities are not left out during the pandemic response. Kara Hinkley, you're one of those people. This is an important job.

HINKLEY:
Yeah, Robert, it absolutely is. I began just four months ago and luckily the Louisiana Department of Health welcomed me with open arms and really let me hit the ground running. And the immunization team, as well as in the Office of Community Partnerships and Health Equity, I've gotten to work really closely with the Office of Developmental Disabilities and the Office of Aging and Adult Services.

And together we've worked to check on their waiver recipients across the state, identifying who are individuals who are home-bound and, just in these past few weeks, have rolled out an in-home vaccine program across the state. And so, now we are able to have regional medical directors dispatch strike teams so that anyone who is home-bound is able to be vaccinated safely in their home, as is anyone else who's a willing arm in their homes over the age of 16.

JOHNSON:
And you've been at this now since January. Can you give us some detail about the work you've done so far? What groups are you working with? What do you feel you've accomplished to this point?

HINKLEY:
So, I think the partnership work is some of the most important work I've been able to do so far. I've worked closely with ARP, as well as advocates on the ground.

You know, we've learned that with building, really, the need to build vaccine confidence, you need to amplify voices of people who are well-connected in the local communities. In the disability community, it's important that they see and hear about others that have disabilities getting vaccinated as well as care providers.

And so, I worked closely with family advocates and family caregivers, who—they have a very large Facebook following. They may consult for Medicaid, or they may be an advocate for an adult child with a disability, and they post an event, a vaccine event, or, you know, when Dr. Kanter updates a letter to providers to really add clarity to who can be vaccinated. You know, Louisiana was on the forefront as it came to having a really robust eligibility for the vaccine.

So, going through those channels, building those enrollment partnerships with trusted folks in the community has been incredibly helpful.

JOHNSON:
Dr. Kanter, Kara comes in at an important time as you're trying to roll out a vaccine program, reaching into tough parts of communities, getting people who are maybe hesitant for one reason or another. What have you noticed so far about the impact of her work?

KANTER:
It's been tremendous. The most important thing to me is that it's been intentional.

And this pandemic has really stretched out departments thin, it's been one crisis after another. I mean, to be frank, a real hustle at every point in this pandemic, it was logistically and operationally challenging in the initial part of the response, it was hard to get the testing program up, it was hard to get the vaccination program up. And this is on top of health departments which have been systematically defunded for decades, particularly in the American South.

To really address people with vulnerabilities like we're doing here, it takes intentional investment. It takes someone who is dedicated to it, who has both the expertise, the commitment, and the empowerment to do that.

And that really, I think, is the value in positions like Kara's. It's someone who's responsible for the end product and is resourced to be able to do that. I couldn't be more thankful for this position. I really wish more health departments could avail themselves with something like this.

JOHNSON:
Kara, Dr. Kanter, at the beginning of the conversation, talked a little bit about some of the things that people living with disabilities deal with during a crisis, but you've had your boots on the ground there now for a while.

Can you extrapolate on that a little bit, maybe give us a little more detail about some of those needs that you've run into so far?

HINKLEY:
You know, I think right off the bat, we were aware that vaccine hesitancy was going to be a critical factor in getting our vaccine rates up. And something that I think that many of us across the country were a little late to realize was that vaccine hesitancy is also extremely high in the disability community.

Luckily, with our state agencies and offices within the Louisiana health department, we were able to survey waiver participants and had over 94% response rate—this is over 20,000 individuals that are on waiver programs because of aging or disability status—and we were able to tell early on that 43% were saying, "We don't want to get vaccinated." That was back in March. Here we are now at the end of April, and that number has now dropped to 34%.

So, we're moving in the right direction, but this really special, unique, and solid data set has helped us to then strategically target what are some of the needs specifically in the disability community to really get at that vaccine hesitancy. The number one reason folks were saying that they didn't want to get vaccinated was because of a real fear around how the vaccine could impact their already-existing health conditions.

And so, being really responsive in the Department of Health, we were able to quickly partner with the Office of Community Partnerships and Health Equity to host a conversation series on COVID really targeting not only folks in the disability community, but also their providers.

Another issue we were hearing about anecdotally, and I've heard it from my peers, was providers are sometimes giving folks incorrect information around COVID, as well. And so, we were having folks in the disability community contact us and say, "My primary care provider told me, because of my disability, I shouldn't get the vaccine." So, this webinar was very important. It was just held last week and we had over 300 folks in Louisiana registered for this.

So again, we're able to get these really good data points in real time and respond pretty quickly, which I think speaks to the infrastructure, the all-hands-on-deck approach and, in Louisiana, the real focus on inclusivity in their COVID-19 response sort of across the board at the state level.

JOHNSON:
Right now, you are signed up to work on this project for Louisiana through the end of the year. So, you have at least eight months left to go.

What else needs to be accomplished? What's on your radar for those eight months, as far as you know, right now?

HINKLEY:
Right now, I'm really heavily focused on the grants aspect and what we're going to do around health equity and serving folks in the disability community in a really robust way across the state with these COVID-19 specific dollars.

We're looking at the immunization team. Every bit of the grant funding coming into them from the CDC has a health equity and a very strong disability access lens, as well, because of this unique role that sits in there, due to the partnership of ASTHO and Wanderly and the Louisiana Department of Health. So, I'm heavily focused on that.

I'm working with the Bureau of Community Preparedness on their health disparities grant in similar ways, right. So, we're looking at LGBTQ+ communities, disability communities, Black or African-American communities, faith-based communities, rural, urban, really targeting equity within our COVID response statewide.

And next I hope—fingers crossed—as COVID-19 continues to lift in the state, to really focus on the emergency preparedness plans more broadly, and utilize that disability lens and equity lens to review the parish plans and seeing how are some best practices in other states being used that we could also adopt.

JOHNSON:
Well, let's talk a little bit about that—the post-pandemic approach to crisis planning when it comes to people with disabilities.

I'd like to hear from both of you on this—what you think those lessons from the pandemic will be and what might get included in those plans, say, a year from now.

KANTER:
Yeah, I'll go ahead and start. And I think Kara did a great way of describing how the funding coming down now has an equity lens to it. We appreciate that it also has a sustainability lens to it.

And this is one of the things I think the CDC under Dr. Walensky has done really well. There's a ton of money coming down right now, and most of it is geared towards responding to the current pandemic, but doing so in a way that builds infrastructure and capacity for the future. Dr. Walensky has been pretty clear about that, and that's the absolute right approach.

So, as we go through these exercises, as Kara and her team work to target programs that offer protection and access to people with disabilities and other vulnerable individuals, we need to be doing so in a way that adds capacity and infrastructure for the future.

We have to be able to adapt these programs to what the next emergency is going to be—and it's not lost on anyone down here that we start hurricane season in a month and a day in Louisiana. So, that's absolutely the hope, that we can parlay these endeavors into more sustainable programs.

There's some really good best practices within the state of Louisiana, too. The city of New Orleans has an excellent medical special needs registry. They have over 7,000 people with medical vulnerabilities pre-identified and registered.

These are people that need assistance during an evacuation, either mobility assistance or someone else to come and check on them. They know who they are, and they have a plan to go get them from their house if they need to.

That's a best practice that we can replicate in other places. And, looking back at the Katrina experience, those types of interventions cost very little on the front end, but really do save lot of lives.

JOHNSON:
Kara?

HINKLEY:
Yeah, I couldn't agree more with that, Dr. Kanter, and I would add a lot of what we're doing now also speaks to that sustainability piece. And so, some of the practices we can put into place now, and that we are putting into place, will reap benefits and equity with regard to emergency preparedness, moving us into the future.

One example I can think of is with the grants works, making sure that our goals aren't just, you know, SMART goals—you hear a lot about SMART goals with grant work—but that they're SMARTIE goals, I.E., so you're including an inclusion and equity lens with every bit of the money that goes out to do the really programmatic work, as we operationalize any of this work, that equity and inclusion lens is being used.

JOHNSON:
Dr. Kanter, you sound like you're pretty well sold on this idea on the job that Kara is doing so far. I doubt that will change. It'll probably only get better for the state of Louisiana and your department. Is this an approach you think should be included in every response going forward?

KANTER:
I do. Absolutely. I mean, look, I mean, let's be absolutely clear. Part of this, a large part, is because of who Kara is and the efforts that she brings and her expertise and commitment.

But, there are a lot of people that care across the country, and particularly more after the experience of COVID. You know, public health is recognized in a way that it really hasn't before.

One of my mentors used to say that public health saved your life today, you just didn't know it. I think a lot of people know it now. So, as we broaden the umbrella, you know, enlarge the tent here, I think we need to be recruiting talented people who want to make a difference. And it's very clear now the potential in that.

JOHNSON:
There probably will come a day when you'll have to decide whether to continue a position like this, whether to dedicate funding out of your budget, to a position like this. Is that something you've thought about?

KANTER:
It is. I'm thankful that the funding is coming at a good clip right now. I am concerned about, you know, what happens a year and a half down the road when a lot of this grant money dries up.

The experience of this pandemic has shown that you can spend pennies on the front end or, you know, hundred dollar bills on the backend. You know, we as a country, we're under-prepared right now, we're scrambling right now in a lot of areas. For example, trying to set up our genomic surveillance system and sequence these variants, we were really caught flat-footed on that when we should have invested on the front end.

The same goes for these types of programs, protections for people that are vulnerable. There's a real return on investment and a real life saved benefit to doing these things on the front end, and I think the argument is pretty clear cut right now.

JOHNSON:
Kara, what's the best argument for states and territories that don't have this resource right now? Should they consider it? Is it worth the money? What do you say to them?

HINKLEY:
Well, I can speak from my experience and I think it's incredibly worth it. I think it's an investment that—I don't have a cost benefit analysis in front of me, but I can guarantee it saves money. I would imagine that the state would drawback money that would it spend towards this sort of position.

I'm thinking of the opportunities I've had, on a more national level, to talk about this amazing inclusive response in Louisiana to something that's incredibly difficult.

You know, we are talking about, with regard to intellectual disabilities and developmental disabilities, these folks are facing an eight times higher rate of death from COVID than those without those specific disabilities.

And we need folks not only doing this work, but what's unique in my role is being able to see it at the state level—all the different pieces, the way that it's moving, using that disability and equity lens—and then stepping out and really participating in my learning community at ASTHO, as well as with other national organizations, partnering with them to talk about some of these best practices.

I'm thinking of, you know, in February when waiver recipients in Louisiana were eligible for the vaccine. And most other states, right, it was hard to find more than a handful of states where folks with disabilities were eligible for the vaccine at that point. Louisiana was, and I was doing media reviews and I wasn't seeing that Louisiana was being noted for that, right, because everyone's so busy. Who's telling that story, who's telling that best practice to other organizations?

And so, being able to get on the phone with NASHP—with the National Association of State Health Policy—being able to present on the Association of Immunization managers, really connecting with these different groups to say, "Hey, this is what we're doing. It's working well. This is the language we're using. It's been an incredibly effective position."

And so, being able to now, you know, inform other states, through my partners at ASTHO, what they can be doing similar to Louisiana has been really helpful.

Just today, I was speaking with both New Mexico and with folks in the Arizona health department around what their homebound vaccination program could look like—and again, ours is moving.

We have likely around 150 that have received in-home immunizations in New Orleans. You know, that's a separate health department, so they're responsible for their program, and we've collaborated heavily with them at the state level. And so, now we have a registry with over 100 individuals that are receiving there in-home vaccines, you know, this week and next.

So, it's incredibly exciting that, because of this role, we are able to do this work and share with other states and help inform their work in a really helpful way.

JOHNSON:
Dr. Kanter, a final word from you to your colleagues across the states and territories about the value of having a position like Kara's and why they would want to support something like that, either with grant funding or their own programmatic dollars?

KANTER:
Well, it's going to save lives. It doesn't get any simpler than that. It's going to save lives, particularly vulnerable lives.

Kara mentioned something that's really so important—how these positions are structured are so very important. And, like a lot of things, you know, it's necessary but not sufficient just to throw money at the problem. So, you can hire someone, you can make an office, and that's probably necessary, but you still have to enable them to receive best practices, to dialogue with experts across the country.

This COVID response has, oftentimes, been so disparate in different states and that's been a hindrance. One of the real strengths of this position has been the collaborative aspect and the ability of individuals like Kara to talk frequently with colleagues and other states share best practices, learn, and communicate. And that's a really good model to potentiate going forward.

JOHNSON:
Like Kara Nett Hinkley, Sara Hart Weir is working overtime to help people with disabilities get their shots, making the most of the chance to serve a group that's hard to reach. The pandemic has brought her to this moment, but it was a lifelong friendship that prepared her for the task.

WEIR:
I've been in the disability community for the last two decades. I really got my start—I went to undergrad at Westminster College there in central Missouri. I came home for the summer and one of my opportunities, my job opportunities, that summer was to work with a young woman who happened to have Down Syndrome.

And my role, my job that summer was really to prepare her for her transition from junior high to high school, which, in the special education system, is vitally important to prepare people with disabilities for that next phase of their lives, but also post-high school, what that will look like in terms of community integration.

And I fell in love with working with that young woman, Casey. She inspired me. She opened up my eyes, my mind, and my heart to this population of people that is oftentimes held back in our society, and really inspired me to become an advocate—not just for her, but the entire population.

JOHNSON:
And you knew her for a long time.

WEIR:
I did, yes. She was part of my life since the first moment I met her. Her mom is still like a second mom to me.

I actually served as her legal co-guardian for the last five or six years. Her dad passed away about 12 years ago, 13 years ago. And as we were preparing for kind of that next phase of life, I stepped in to help her mom and her older sister navigate all her supports and services.

And, just as I started this role with the state of Missouri—jumped into help and use my expertise and my leadership with my background in the COVID 19 response—at the end of January, before she had access to the vaccine, Casey unfortunately passed away of COVID and pneumonia. And so, the work that we do for the state of Missouri and across the country with ASTHO is vitally important. To me, it's a personal passion, of course, but it puts it in perspective every single day.

JOHNSON:
Absolutely. A very personal connection there and the loss of a long-time friend.

So, now you're doing this on behalf of everyone in the state. Describe the challenge of getting this community vaccinated.

WEIR:
There's a lot of challenges because, just like all of us, individuals with disabilities come from all aspects of Missouri. They live in our suburban, our rural, and our urban communities.

Some individuals with disabilities can't leave their homes in order to access the vaccine. Some individuals don't have access to transportation, you know. Others, you know, are living with older adults or older caregivers.

And so, this certainly is a complex situation that we're facing. And so, that's what we've tried to do from day one is to meet these individuals, and their families, and their caregivers where they are.

And I have to say, from the top-down and the bottom-up here in the state of Missouri, that has been a significant priority in terms of vaccinating people with disabilities. I think Missouri took it a couple of steps further than most states.

From day one, caregivers were classified as unpaid healthcare workers, those individuals on the front lines protecting our vulnerable populations. They could access the vaccine in our first phase and then, following the CDC guidelines, we also took it one step further—individuals with Down Syndrome were considered high top priorities for populations that needed to be vaccinated early on.

We expanded that definition here in Missouri. We're very, very proud to be able to work on that. We classified it as individuals with intellectual and developmental disabilities, such as Down Syndrome.

So, we essentially opened up the population to serve all individuals with disabilities, adults with disabilities, and that second tier or that second roll out of the vaccine. And we're working on it every single day.

JOHNSON:
We hear a lot these days about vaccine hesitancy in the general population. It's becoming quite a big concern. Is that an issue when you're talking with people who have disabilities?

WEIR:
I think vaccine hesitancy crosses all different types of populations. It's exactly the conversation and the strategies we're putting forward here in the state of Missouri. I'm honored to also, in my role with ASTHO and the CDC, I also co-chair for the state of Missouri, our advisory committee on the equitable distribution at the COVID-19 vaccine.

We recently just formed a work group under the equity committee focused on vaccine confidence. We know we need to put strategies forward to increase vaccine confidence and address those hesitancies that exist in all different types of populations. People with disabilities are an active—or the disability community, rather—are an active member in our vaccine competence work group.

And it's vitally important because, as we move from mass vaccination sites, mass vaccination clinics, a lot of the challenges to vaccinate the rest of the population is really going to lie within the family. And so, we are forming collaborations with our Missouri academy of family physicians, our DO organizations, as well as rural health, to get into those communities where, when the decision to get vaccinated comes around the kitchen table or the dining room table, individuals with disabilities are part of that conversation.

And so, we're putting together some new campaigns, some new videos, and some new sources to help educate those families and encourage them to go out and get vaccinated. So, they're certainly an important stakeholder in this next phase of the COVID-19 vaccine rollout.

JOHNSON:
And those materials will be, essentially, carried to the target population by folks who are a part of these partnerships.

WEIR:
Absolutely. We work with the Missouri Developmental Disabilities Council. They are an active member of our equity advisory committee. We work with the Governor's Council on disability, the areas on rehabilitation across the state.

And it's really important that they continue to help us on the ground, voice those concerns and those challenges, so we at the state level can put forward strategies to protect our most vulnerable across the state, but also to ensure that families and caregivers are part of the dialogue and the conversation.

JOHNSON:
At this point in the process, it's been a few months since you started working on this.

What is performing the best right now, and how might those strategies apply in places where they don't have someone like you helping?

WEIR:
I think what we're trying to do with the state of Missouri is we're trying to think outside the box. And when I started back in January, I kept hearing transportation, transportation, transportation is going to be a big barrier to vaccinate our most vulnerable and those individuals that come from underserved and underrepresented communities.

And so, one of the things we did early through our transportation work group at this equity committee, is we compiled an entire repository or comprehensive list of all of the transportation resources that existed throughout the state by our regions in Missouri, but also our counties.

We have a lot of public transit that's offering free transportation or low-cost transportation for individuals that need it to get to their vaccine appointments. And so, we launched that in early March and it's called Get a Ride. It costed nothing. All we needed was the manpower to pull this together.

And what I'm hoping is that, from our experiences and our out-of-the-box strategies that we're trying to deploy here in Missouri, we're setting up ourselves for success long-term and building the infrastructure should another public health matter such as the COVID-19 pandemic happen. We now are building infrastructure to protect our most vulnerable.

One other quick example—we're partnering with our local fire departments and EMS to actually go into folks' homes and vaccinate those individuals that can't leave their homes—it's commonly referred to as our home bound population. And we're having a lot of success with tapping into these local public servants that want to be part of the equation and part of the solution to help reach those individuals and, again, as I said earlier, meet them where they are, and it's proving to be very, very successful.

JOHNSON:
It's not been an ideal situation from many different perspectives, but are you finding people willing to jump in and help out? Creating new relationships in the middle of a crisis not as hard as maybe we thought it would be?

WEIR:
It's absolutely not as hard as I thought it would be. You know, I think if you can be creative and you're thinking outside the box, people are definitely willing to listen. And my team and the colleagues that I work with here in the state of Missouri have really embraced my role and really have seen the opportunity, not just to engage stakeholders in the disability community, but also have utilized my background and stakeholder engagement to reach other populations.

And so, part of my role—I'm also chairing a work group to help reach the unhoused population, those individuals and their families that are essentially homeless and affiliated with sheltered and unsheltered locations across the state, and really have enjoyed working with those partner organizations, again, to deploy strategies that are helping reach vulnerable populations.

JOHNSON:
Do you think the work you're doing there in Missouri is transferable to other states and territories, even now?

WEIR:
Absolutely. And not just in COVID-19 times, you know, when we all kind of work through the transition and hopefully get back to some level of normalcy in our daily lives. I think what we're doing is we're building the infrastructure to be successful. And we know inequities exist, especially in disability and other populations, and, so, I think what we're building here is something that will continue on for the state of Missouri and hopefully other states.

The question I get oftentimes, or the request I should say, from a lot of our partners that are involved in our weekly equity committee meetings, is that we hope this committee continues after the COVID-19 pandemic is through because the dialogue we're having, the solutions we're putting forward, are meaningful, they're thoughtful, and, again, we're engaging those stakeholders that are on the ground serving these vulnerable populations.

JOHNSON:
Thanks for listening to Public Health Review.

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For Public Health Review, I'm Robert Johnson. Be well.