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Share Public Health Transcript: COVID-19, Experiences of People with Disabilities

Season 2 Episode 1

Hannah Shultz: Welcome to Share Public Health, the Midwestern Public Health Training Center’s podcast connecting you to public health topics, issues, and colleagues throughout our region and the country, highlighting that we all share in public health. Thank you for tuning into this series focused on COVID-19 and its impacts in our region of Missouri, Iowa, Nebraska and Kansas.

Anne Crotty: Thank you for joining us for another Share Public Health podcast. My name is Anne Crotty with the University of Iowa Center for Excellence on Developmental Disabilities. People with disabilities are one of the most vulnerable populations to COVID-19 and we’ve seen a disproportionate impact on both the population of people with disabilities and the service system. Our guests today will share how COVID-19 has and continues to impact families, organizations and the larger population of people with disabilities.

So our guests include Karin Ford with the Iowa Department of Public Health, Disability and Health Program, Kelly Von Lehmden, the University of Iowa, Center for Excellence on Developmental Disabilities and a parent of a child with a disability, and Sheena Wendel with Link Associates. Let’s turn it over to Karin.

Karin Ford: Thank you, Anne. I’m a community health consultant for the Iowa Department of Public Health, and I’m funded through a grant through the CDC that is disability and health related. I have since 2005. Our goal’s focus around inclusion and accessibility. We have done past work in disaster management.

Crotty: Thanks, Karin. So people with disabilities are at greater risk for developing COVID-19 and complications. Can you tell us about what percentage of the total population has a disability?

Ford: Well, according to the State Data Center, the 2019 report, almost 12% of Iowa’s population over the age of five has a disability. The actual percentage is 11.7%, but that can fluctuate at any time. Of those who have reported, over 136000 reports some type of a cognitive disability, and that would include the IDDD, the individuals with intellectual disability and developmental disability would fall under that. Currently, we’re in the middle of a global pandemic and there’s no vaccine or known treatment.

Crotty: Right. So what factors put people with disabilities at a greater risk? And why is this a health and safety issue of particular concern?

Ford: Well, we’ve been told by health professionals that we need to keep a safe distance, which is known as social distancing. For folks with IDDD, that might lead to some unwanted effects. This group is known to feel isolated anyway, or having trouble communicating, and this may make them feel even more isolated. Their regular routine has been disrupted and it may include other impacts. They have a reliance on staff that come into their home for personal care. That staff person may not be able to come in as often or not at all. They may not understand why they can’t hug their friends. They may not understand the need to wear a mask or may have just sensory issues regarding wearing that mask. It just may feel uncomfortable to them to where they can’t wear it. They may be independent enough to use the restroom, but they may not understand how important it is to have cleanliness of washing your hands and not touching their face or putting their hands in their mouth.

This difficulty of understanding how to socialize virtually may not come naturally to them either. They may not understand why their friend’s on the screen or why the screen is talking to them personally. They may have underlying health conditions that put them at greater risk for COVID as well, or having serious complications. I would suggest that creating that new normal and creating a health assessment should be something that family members or caregivers should take a serious look at to be able to provide care if the family member or the caregiver isn’t available for the person with IDDD.

Crotty: So what tips do you have for the public health system that wants to serve their population of people with disabilities better?

Ford: Well, the landscape is always evolving, so you kind of want to keep in touch with public health folks or sites like the CDC site, or the Centers for Disease and Control, because they’ve posted so many new things. So for example, we want people to be aware of the masks and the social distancing, but we don’t want to be scaring folks with IDDD. The health assessment, it’s just basic medical information that would include the social and environmental information, for example, on how a person communicates or expresses pain, responds to changes, the best way to take meds, what their interests are, what motivates them, what calms them down, have a list of current emergency contacts, identify areas of your home where you can quarantine if needed. So think in terms on how you would maintain health and wellbeing. If that family member or that caregiver is no longer available to provide that care, who would help in this transition?

I would encourage families to try and obtain medications in a 90 day supply and have it delivered, if at all possible, to eliminate outside contact, always keep a working thermometer available, purchase a pulse oximeter that checks the oxygen levels in your system. They’re really pretty inexpensive, around $10, and that can provide good information. There’s a learning curve in understanding how to use them, but it’s not difficult. For those of you who don’t know what a pulse oximeter is, it’s the little clippy thing that they put on the tip of your finger and it will read out what your level of oxygen is. So, for example, if you have someone who is high risk, I would suggest taking their temperature in the morning and in the evening and keep a record of it. I would also do the oximeter just to ensure that the temperature, you can tell if they might be falling ill and it makes sure that those oxygen levels are at a good, steady pace.

I would use delivery services for food and cleaning supplies also to limit that contact. It’s just a simple assessment of a threat and determining what is in your environment and what you would need to continue and how to make that happen. For caregivers and family members, you could start a group, maybe on a Zoom call, to discuss what’s worked, or just for a support system to have that contact with the outside world of what’s working well, what’s not working well, what resources are available in the community, so you don’t feel so alone in this pandemic. Some ways to increase social interaction is through social media if folks can manage social media. You can do that through video con conferencing, Zoom, emails, having scheduled calls with friends and family to help ease that isolation, video games can include playing with others electronically. Don’t forget music and movies for relaxation. These services are free, but you need internet. So there is that cost.

Exercise is always a good outlet. Something as simple as taking a walk each day, and you can plan your day to do these things, plan a call at nine in the morning with a friend, and a walk at 10, or trying to restructure your new normal, so that routine is, is back in place somewhat. You could take virtual tours of zoos or museums, and this modeling behavior we’ll figure out, like I said earlier, that new normal or that new routine without creating fear or stress. Social stories or storyboards are graphic tools that can help people with disabilities understand information that otherwise, might be overwhelming or confusing to them. You could link to some sites for these storyboards.

Crotty: Thanks, Karin. I wanted to ask about one of those factors that you mentioned with internet access. It seems like lack of internet access might be a barrier for some people with disabilities in accessing some services and connecting socially. Do you find that’s the case for some populations?

Ford: Yes, and it can be the population, or it could be the location. Unfortunately, in Iowa, we do not have a across the board internet connectivity, so it’s hit or miss for the people in rural communities. So that might not be an option or available for them. So you’d have to do things the old fashioned way, and that would be on a landline phone or using taped material on TV. That’s when having a network would be very helpful for folks, particularly in the rural communities, so they can find out what works and what doesn’t. This is new for everyone. What I often tell families, particularly when I’m helping them plan for disasters is family members and people with disabilities are their own little emergency manager because they daily navigate a hostile environment. So they have more abilities than they really realize that they have. They’re good at this. It’s just tooling the response to the problem at hand. I’m confident that caregivers and family members can manage this because they live it every day.

Crotty: Yeah. Great points, Karin. There has been increasing awareness of disability as an issue within the field of health equity, and there’s been encouragement of public health organizations to consider people with disabilities in their general public health work to make sure that people with disabilities are not segregated or separate and that they’re included in all of the work that a local public health agency would be working on. Is that something that the Iowa UCED and the Iowa Department of Public Health might be able to help local or other areas within the state health department work on?

Ford: Well, at the department, we try and include disability in all our grant work, and that would include physical inclusion, anything that we do in notification, if we publish materials, that it’s an alternate format, that we have accessible meeting sites and locations. Do we do it every time? No, we don’t. Here’s the sad reality; unless you are a person with a disability or have a family member or a friend, it tends to be off the radar for people. So just the awareness piece of, as you mentioned, to get people involved in planning committees and on boards and in the position of making decisions for input is so, so valuable because they look at things differently than maybe we would and it’s very valuable to have their input, so we understand and for that inclusion because we’ve got to build a bigger, broader tent for inclusion, and we’re working on that. I think since I’ve started working at the department, it has improved. I know the physical aspect and how we disseminate materials have improved, but there’s always room for improvement.

Crotty: Mm-hmm. Thank you. That is an area that we can help other organizations with in Iowa too. I’m sure that UCEDs and state health departments in other states could help if any organizations aren’t listening. We’ll put our contact information in the resources. Thank you, Karin. Now, we’d like to turn to Sheena who’s going to share the provider perspective.

Sheena Wendel: Thank you. I am a residential supervisor at Link Associates. Link Associates provides residential, day hab, employment, case management, case coordination, leisure and transportation services to adults with disabilities. Our residential services are currently serving approximately 115 people in Polk County.

Crotty: What have been the biggest support needs for your consumers during the pandemic?

Wendel: Everybody has been staying home much, much more, which has led to increased engagement and support at the homes, a lot of reassurance, comforting and encouragement as people adjust to all these changes. As day programs and most employers closed, everybody was home. People who regularly leave with their families or have families over to visit were not able to do so for a while. So the men and women we support relied on their direct support staff more than ever before. We provide support with all aspects of daily living, including assisting with hygiene needs, administering medications, cooking and cleaning. So the pandemic caused significant changes in our service structures.

In March, we implemented restrictions for people to stay home unless going out for work at a community employer, medical appointments, or really what we identified as being an essential need. So to adjust to that, we increased the presence of our direct support staff in our residential homes. Then our developmental instructors normally, a lot of the people we support go to a day program that we call day hab, it’s day habilitation services, and the developmental instructors began providing those services in the home. So rather than having people go into our main building where we’d have a large group of people in somewhat smaller rooms together and interacting with a lot of people, we were able to have the developmental instructors go to the homes so people could receive those services in their own homes.

So we’ve had varying degrees of understanding of what’s occurring and why the schedules are changing. Our direct support staff have spent a lot of time explaining COVID-19 and the rules and hand-washing and why we’ve changed things. We’ve also had to get really creative in finding ways to keep people entertained; going out to parks or for walks at places we deemed safe, or sometimes just going for drives, but explaining why we can maybe go through a drive-through to get a pop, but we’re not going to go sit inside McDonald’s like we usually would. So our direct support staff though, have done amazing jobs helping people use the technology to connect with families. FaceTime, Zoom, Skype have all been done. Our leisure department actually has started doing Facebook Lives. They had them up and going within days after everything closing and those are offered several times a day, which has allowed people to participate virtually those activities.

Crotty: You mentioned with day hab service providers going into homes. Can you talk a little bit more about what day hab is and how it would look like if some of those staff members are going into people’s homes and what preparedness steps Link Associates is taking to prevent spread of COVID-19?

Wendel: Yes. So for day hab, what that normally looks like is most of the people we support take a bus into our main building and everybody is in different rooms or groups within the building. They’re in different ratios depending on the support needs. Then throughout the day, they have what’s curriculum, which is like learning opportunities and then also various leisurely opportunities offered to them in that setting. They also go out on outings, so they’ll take a bus and go places in the community to engage in more leisurely activities. We also have a volunteer program, which is all community-based where they volunteer at various… often like assisted livings or libraries, places that they have set schedules to go volunteer at. So when we shifted to in-home, what that looked like was that one developmental instructor was assigned to each house. So that way, it was basically one person going into the home to provide those services versus the really large number, over a hundred people they would probably be exposed to if going into our building.

So for preparedness, what steps we took, we’ve encouraged distancing as much as possible between the employees and person served. Plus, most of our residential settings have three to four people living at them, so just encouraging that distance between roommates also. We increased our cleaning, sanitizing and hand-washing at all locations. We person served all temperatures are taken at least twice a day; morning and night. We increase that if we have a concern to every couple of hours or more often. All employees have their temperatures checked arriving to any of our work locations. All employees were provided masks, which are expected to be worn at all times, supporting a person served or when within about six feet of another employee also. We shifted a lot of our medical appointments to be done by tele med as we were able to do so. We’ve also really evaluated what those medical appointments were necessary at the time and what could be postponed or done in a different way.

Any time an employee has symptoms of any kind of illness, we’re following the CDC recommended guidelines of not returning to work until time has passed after those symptoms are gone. We’ve also supported employees with getting tested through the Test Iowa sites as able to do so. Shopping and other essential errands are completed by an employee on behalf of the person served. So typically, it’s always been one of our goals to get people into the community. So when they need to go grocery shopping, we’ve always wanted them to be at the store with us, assisting them with that shopping. However now, currently, we’re doing it on their behalf or using online delivery to prevent any exposures.

We still are not allowing outside visitors in our residential homes or in our main building. Our executive director also regularly provides updates to families in addition to recommendations about safety measures. When we have had situations where we had very known exposures or a person served who was positive for COVID-19, we have had amazing direct support professionals volunteer to shelter in place with those houses for two weeks. That’s what we’ve done for all of our situations where we had somebody positive was we had two employees move into that home for two weeks to provide them the support needed.

Crotty: Wow. Do you have any other advice that you would like to share with providers?

Wendel: Be creative when considering solutions for the challenges and ask for help of others when needed. I think our agency has become stronger than ever before with this. It brought all of our departments together to really work through problems and find ideas and solutions to them. We’ve even had people from other departments step into direct support roles when they saw that was the primary need was to be at the houses helping because typically, when a house has a need for an open shift or additional support, we have people from other houses go in to work that, but we really tried to limit how many people were going in and out of every house, but to do so, we needed more people to step into those direct support roles at some of our houses.

When we’ve had somebody positive with COVID-19, we’ve had one assigned person who calls and gets all the vital information and then reports that to everybody who needs to know, which has been really helpful with all of the supervisory and management teams knowing who was experiencing what symptoms and monitoring those. Then lastly, we have an on-call email distribution list, which goes to our supervisor and management director team, which was also really helpful when we’ve had a need. We can just send out an email and everybody is checking their emails pretty frequently and can support as needed. So one night, there was a house that had people who were COVID positive and they just sent out an email saying, “Hey, we need some cough syrup over here. Can somebody get it for us?” And we were able to quickly respond and go get them what they needed. So that’s been a huge help for us.

Crotty: Thank you for sharing, Sheena. Now, we’d like to turn to Kelly to find out more about the family perspective.

Kelly Von Lehmden: Thanks, Anne. My name is Kelly Von Lehmden, and I am a parent of a 21 year old with Down syndrome. Sydney just has finished up her last year in the transition program for our school district and is working at a local university. COVID came at a really difficult time, I think, for her. So I’m really excited to share some of our experiences with you.

Crotty: What have been the most difficult things for Sydney during the pandemic?

Von Lehmden: I would say that the isolation that happens so quickly and just the routine was completely taken away from her. Sydney is very active in lots of activities, very engaged in school, very engaged in her work experiences, very engaged in sports. It was really hard at first, first for her to understand why this was all changing, but also then now, what do we do to help her work through her schedule? Some of the things that were impacting us as a family is it’s really hard to know exactly how she was feeling about it.

We knew that she went from seeing her friends and her coworkers every day to not having any contact, really with them at all. This was before any virtual type of meetings or conversations. She also was very active. So we had challenges just with managing her weight and being healthy. With her, even though she has great communication skills, it’s really difficult for her to maybe even understand why she might be feeling a certain way, but for us as her parents, just really difficult to know how she’s feeling and being able to understand how much this pandemic is really impacting her from a day-to-day perspective.

Crotty: How have you talked [inaudible] like social distancing?

Von Lehmden: Sydney, we have the conversation about the mask and we all wear one as a family. So she’s fine wearing a mask. I think the challenge has been, we just haven’t let her go out a lot into the community because we’re so worried about getting sick because many others aren’t wearing the mask to protect her. Masks are hot. She gets easily overheated. So we’ve had to find alternatives. So now, she actually prefers a face shield. Then we do talk about hand-washing, but again, I think the hardest part is she probably goes out certainly a lot less than the rest of our family and the public. I don’t take her into the stores unless we absolutely have to, and not that she couldn’t, but I think I’m just so worried about her getting sick from somebody else.

Crotty: Now, I understand that Sydney was supposed to participate in her graduation ceremony this year. How did you talk about that she wouldn’t be able to do that in the way that she expected to do that?

Von Lehmden: So Sydney was supposed to participate… And it’s a smaller group because it wasn’t part of her large class graduation that she got to do. This was more from the transition center, but nevertheless, she had been looking forward to this day because her family was going to get to be there. She was going to get to graduate with her close friends and her peers. She had a lot of questions leading up to it. “Am I going to get to do that? Am I going to get to see my friends? Am I going to get to say goodbye to my teacher?” So we just kept talking about that they’re working on it.

Then what I appreciated, what was so needed for her is that the school district did a really nice job of having a parade, being able to present her with her diploma. So there was so many more people that actually came to our house and observed it on the street and in our yard than probably would have been there for her original graduation, that it turned out that she was just so proud and happy that she got to share it with people that she forgot about what it was supposed to look like, but if they wouldn’t have done anything, I don’t know how… She would have been really, really sad, really sad.

Crotty: Are there any other things that you feel have helped Sydney cope with changes during the pandemic?

Von Lehmden: Yeah, we’ve had to, I would say, do a number of things maybe to ease her, but to also put structure back in her life, even though it was different than what she’s used to. We make a list every morning of the things that she needs to do in the day and she very much is motivated by lists and checking them off. We find when we can give her those kinds of things to do, she seems to be much happier in the day. She also has a lot more time to think about food and what she’s going to eat and how often she can eat. So we’ve come up with a meal plan that we put together. So every Sunday night, I figure out exactly the food for the week, and then she knows what to expect. I think that has helped her not focus as much on food and eating.

We also, we’re really grateful that her school district at first, started Zoom calls so she could connect with her friends, but then also, Polk Rehabilitation also did some summer Zoom calls on a variety of different topics. Sydney absolutely looked forward to those one-hour calls however often that they happened. It was just that motivation and something to get up for and to feel like she had purpose in the day. So I was very, very grateful, as a parent, that she had those things to look forward to. The other thing that I think can be a challenge, for Sydney, she really does well with technology. So once we got the initial link, she does it all independently, but I have often thought about so many other of her friends, even that don’t have those same skills. If you have a working parent or parents that can’t be there with them, how do they get to participate in those things without that kind of support? Because I know how much they meant to Sydney.

We also have come up with different challenges within our family. Her sisters and her had this activity challenge that they have to get 400 calories with activity every day, and that has really given her purpose and she’s very motivated to exercise because she wants to be able to do things with her sisters. So we’re just trying to do other things to create that structure that she so desperately misses. We still struggle with giving her enough social opportunities. We’ve had a few of her friends over one at a time just to be outside, but we don’t have as many respite workers or supported community living workers that come over because again, we’re really cautious about who we let her have contact with. So everything so far that we’ve done has been outdoors.

So those are the things that I’m still I’m worried about for her is just not having those social interactions that she’s used to. Her biggest concern right now is she’s looking forward to starting back with her job in the fall. If students don’t come back, I’m not sure she will have a job. I don’t know that yet. Then also, she did not really have an opportunity for summer employment, which she was looking forward to. So there’s all sorts of things that are still concerns to us, and I’m not sure how to address those depending on what happens, I guess.

Crotty: Can you talk a little bit more about those concerns and thinking specifically, about when we start to open up again?

Von Lehmden: Yeah. I’ll speak primarily about her job because she was really looking forward to her job that was Monday through Thursday and it really does give her the social piece, but also purpose. She’s very proud of what she does and she’s very excited when she gets to buy stuff with her own money. But I do have concerns when it comes to this because she needs to be thinking about, is she going to wash your hands completely as needed when I’m not there?

So when she’s unsupervised, will she do all those things that we know need to happen to keep her safe and to keep others safe around her? So just that extra training that might need to happen and making sure that it gets done. Those are the things, because she’s independent, it’s a wonderful thing, but she also needs some guidance sometimes or some extra reminders to make sure she’s doing things as thoroughly as she needs to. We all know how important appropriate hand-washing is with COVID, and I know that’s something that Karin even mentioned that just making sure that she knows how to do that, but really, that she’s doing it when others aren’t they’re monitoring it.

Crotty: Do you have any other suggestions, either for families that are caring for people with disabilities or for the public health community in supporting people with intellectual and developmental disabilities during the pandemic?

Von Lehmden: My suggestions for other families is to reach out to other families that maybe have similar challenges to brainstorm about. Some of these things are things we came up with the ideas and others are ideas that we have learned from other families. So really continuing to rely in and support one another. There are resources out there. We have an Iowa Compass website that provides resources. You can actually ask questions. They have a great workforce that can support families and people with disabilities. So I would strongly consider that as a resource for them. Also, it’s something that you asked, Anne, and Karin kind of responded to, I think COVID has really shown us that people with disabilities are forgotten in terms of those initial guidelines and things that need to happen. Really, they have barriers that have happened long before COVID, but they only were worse with COVID. So how can we work with policy makers to make sure that we’re those needs and that we aren’t doing it as an afterthought, that it is part of our initial guidelines and suggestions and that does start now, as Karin mentioned.

People with disabilities or family members on those planning committees and work groups, they’re going to help you with designing the guidelines so when we do have something like COVID happen, that we were thinking about them before and during, and not after.

Crotty: Thank you, Kelly. Thank you to all of our guests for sharing your stories with us today.

Shultz: Thank you for joining us today. Special thanks to our guests and to members of our planning committee, Rima Afifi, Anne Crotty, Paul Gilbert, Mike Hoenig, Kathleen May, Melissa Richlen, Hannah Shultz, and Lori Walkner. Funding for this podcast is provided by the Health Resources and Services Administration. Please see podcast notes for an evaluation and transcript.

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