However, we live in a world in which the main form of communication is spoken language, and people who completely rely on AAC are at an automatic disadvantage. People who cannot rely on spoken language to communicate require support and accommodation. We can do this by encouraging them to use whichever form of communication they find the most accessible, that most other people can understand.
The entire world has been dealing with the Covid-19 virus for a year, with a few major serges, which put a large strain on hospital systems. However, a couple of vaccines have been developed and this is giving people hope the pandemic will be over soon. With great disappointment and frustration, the roll out of the vaccines, especially in The United States, has been slower than expected. Therefore, the best practices of slowing the spread of the virus are still wearing masks and social distancing.
When somebody is experiencing symptoms of Covid-19 they should self isolate or if their symptoms are severe they need to be hospitalized. This can be stressful for anybody, but it can be especially stressful for individuals like myself, who rely on AAC because we might be put into an unfamiliar situation. Currently, hospitals are still not allowing visitors when somebody is admitted whether they have the virus or not. Normally, either family members or Personal Care Attendants accompany these individuals to make communication easier and ensure that their needs and comfort are being addressed.
How to communicate effectively
Many individuals who rely on AAC reside in group homes, so self-isolation is next to impossible due to close contact with other residents and care providers. One solution is to transfer the residents who require isolation to one specific group home. But this could have a big impact on the continuity of care, especially if the resident has a complex communication disability. As is the case in hospitals, if the staff is unfamiliar with how a resident communicates, it can be a stressful situation for the resident as well as the staff.
If you are someone who uses AAC, or someone who cares for someone with complex communication needs, it is important to be prepared to ensure that communication needs are met. This is especially relevant if someone needs to be unexpectedly relocated or hospitalized. One thing to be done is to prepare communication support materials to help with comprehension and expression. Make sure these are ready on hand and be sure to include low-tech, nonelectronic options as some people may not be able to access and use electronic technologies.
Creating a health passport
An example of a low-tech option is a medical or health passport with all critical health information including medical conditions, medications, current medical team, and contact information. Make sure that this is easily located to share with medical personnel. People can also prepare instructions for medical staff or other new communication partners explaining communication techniques as well as positioning and daily care requirements. Use simple clear language. Provide photos if possible, or include videos demonstrating techniques.
As a part of my research for this blog, I decided to create my own medical passport to see what the process was like. I found a template online so that helped tremendously to know what information to include.
The process took a total of ninety minutes and it really made me think about how to explain simple tasks for my care such as helping me drink, feeding me, and even how to position me in bed. Below are examples of pages from my medical passport.
Because hospitals stopped allowing visitors at the start of the pandemic, patients became more stressed and isolated. A computer programmer named Brian Whitmer developed Co-VidSpeak after he saw the need for patients on ventilators to communicate with loved ones at home. He determined that patients could greatly benefit from positive emotional connections with others. However, when quarantine or social distancing is in effect, physical proximity is not an option. Co-VidSpeak is a free open source, web-based video conferencing tool built for people who can’t speak but still need to emotionally connect with those at a distance. Here is a short video that demonstrates how Co-VidSpeak works.
- Brian Whitmer (0:02):
- Ok, I’m here with David Chapple and we’re showing off Co VidSpeak, a new video communication tool to support people that may be nonverbal or have difficulty speaking. Specifically built it to try to help people who may be in a hospital situation where they’re on a breathing tube or other situation where they can’t get their words out.
- Brian Whitmer (0:24):
- Co VidSpeak is a videos feed, like you can see here, I got David on the other end of the call. And around the video feed we’ve got some buttons. So I can hit those buttons and highlight and send it to him, but he can also gesture, so I can tell which buttons he’s thinking about or that he’s looking at. So we’ll go ahead and try that and see if I can tell what David’s, David’s pointing to.
- Brian Whitmer (0:48):
- So he’s got up here saying, saying, “Hi.” So it highlights for him on the other side as well so he can see the message that, so he can see and confirm the message that I’m, that I’m hitting for him. So Co VidSpeak has multiple layouts like this. You can talk about feelings. You can make requests, if you’re trying to have a conversation to talk about things.
- Brian Whitmer (1:11):
- There’s also a keyboard so we can spell. There’s lots of different, different things that we can be able to say. So, let’s say that David, you know, we have a conversation and we start to slow down and I can say, “Hey David, now what should we talk about or what should we do?” And he says, “We want to look at some photos.”
- Brian Whitmer (1:33):
- One of the other features of Co VidSpeak is I can say, “Let’s go ahead and share.” I can share pictures or videos or I can share my screen to the other person. So, if I have some photos that I want to share, I can actually pick those [inaudible] screen shots. And I can say, “Here, look at this picture, this is, my wife did one of those. Like, look like a famous painting photos not too long ago, so she’d look like a [inaudible].”
- Brian Whitmer (1:59):
- So, I can send that, or I can send videos so we can have something interesting and fun to talk about and be able to share those emotional experiences instead of just talking about, you know, our faces. We can also send reactions, right? So, I can send, I can send Dave some roses. Or I can send celebration sound, we get some good news, we can pray if we’re worried about things.
- Brian Whitmer (2:23):
- There’s lots of reactions that we can send, and that can go both ways. If the other person has touch, they can touch it from their side and they’ll send the reactions back to me, or we can just be a one-way communication like we’ve got, like we’ve got, well, not one-way. One, one-way as far as the emoji-sending and the button-hitting.
- Brian Whitmer (2:41):
- But the idea is to be able to have something where we can have more of an emotional connection and be able to have, you know, some responses and interactions instead of me just talking at the person who may not be able to speak and may not be used to, not being able to speak. So those are just some of the basic features of, of Co VidSpeak. Dave, is there anything else you want me to talk about or cover?
- David Chapple (3:14):
- [Four beeps] I think [two beeps] I have [two beeps] what [two beeps] I need [beep] I think I have what I need.
- Brian Whitmer (3:48):
Boardmaker is another resource for special education that supports communication, access and the social/emotional needs of more than six million students in 51 countries. According to the website of Tobii dynavox, creator of Boardmaker, “At home, at school, or in a clinical practice, Boardmaker drives your student’s success.” The company announced that, “To help educators, parents, and learners during this time of need, the Tobii Dynavox team has gathered our resources and created Coronavirus materials within them.” The company is releasing new sets of “At Home Learning” communication boards every couple of days to make homeschooling easier. Boardmaker also created printable communication pages to support caregiver-to-patient communications in a hospital environment.
These uncertain times can be even more uncertain for people with a complex speech disability because they might be put into an unfamiliar environment. This might occur because they might be sick and need to be admitted to the hospital, or they need to be isolated.
Fortunately, with the right preparation, uncomfortable situations can be less stressful.