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Crisis Response Podcast Episode 6 Crisis Communications Technology for the Deaf and Hard of Hearing AccesSOS

Episode #6: Crisis Communications Technology for the Deaf and Hard of Hearing | AccesSOS



Episode Transcript

*This transcript was compiled using automated software — spelling and punctuation errors are possible.

Jason: Hello Gabby! Welcome to the Crisis Response Podcast, thank you so much for joining me.

Gabriella: I’m excited to be here, thanks for having me, Jason.

Jason: My pleasure. You are the founder and Executive Director of AccesSOS, could you share what AccesSOS does?

Gabriella: AccesSOS is a nonprofit that’s driven by technology. We believe that technology is at the core of our mission, and that mission overall is to make emergency help accessible for all people, but in particular deaf and hard of hearing people, as well as those who don’t communicate in English or people who might be in situations where it’s scary to talk out loud in a given emergency situation such as a domestic violence situation where the person hurting you is nearby and you can’t use your voice to call for help.

Jason: That’s a really awesome and necessary mission. I know you have such a powerful backstory, I’m wondering if you could share about how you got involved in this and how you were led to start this fantastic company?

Gabriella: Yes, so it comes from my personal experience. Both of my parents are deaf and sign language is my very first language. I learned sign language before I even learned how to talk.

Growing up I saw how my parents were constantly left out of everyday situations. You know, I never went to the movie theatres growing up because the movies were not close captioned, and so kids would talk about the latest movie that came out and I’d be like, “I have no idea what’s going on.” They were left out, and pop culture references are one thing, but my parents sometimes weren’t able to watch the nightly news because it was not close captioned, so they were being left out of being informed citizens of what was going on locally and nationwide.

But it wasn’t until I realized that being left out could mean life or death that I fully grasped the situation my parents and so many others were in. My father once was home alone, and had a medical emergency while home alone. We found out later that his gallbladder had ruptured, and since he was home alone he was not able to make a phone call to 9-1-1 for help because he’s deaf. What he ended up doing was sending a text message to me and my mom, but really to me in particular to make that voice phone call to 9-1-1 for him. I wasn’t near my phone at that time and that delay in my own response caused a sense of guilt for me.

Thankfully, my father was able to survive his medical emergency, but what would have happened if the situation was even more serious? That’s ultimately what led me on this path to start AccesSOS because I realized that text to 9-1-1 wasn’t available at my parents’ hometown at that time, and that there were more than 37 million Americans that are deaf or hard of hearing that can’t call 9-1-1 in an emergency.

My research led me to find that approximately 30% of 9-1-1 call centers accept text messages, but that leaves 70% of call centers out there in the US that don’t have that capability right now to accept a text message via 9-1-1. So that is why I said technology is at the core of our mission and our solutions. We’ve started out with a mobile web app that translates text into a 9-1-1 phone call so that 9-1-1 call centers can receive a call for help from someone who is deaf whether or not they have text to 9-1-1 capabilities or not.

Jason: That’s an incredible, really powerful story being able to speak from personal experience. What was it that pushed you to decide you no longer wanted to be a bystander so to speak, but rather that you were actually going to go and start a company that’s going to address this. How did you ultimately make that final decision?

Gabriella: I came to that decision because I was tired and frustrated at the alternatives. People would talk about next generation 9-1-1, people would talk about what’s coming next, I would personally talk to people that manage 9-1-1  all centers and public safety answering points [PSAP] who would talk about having teletypewriters [TTY] and why couldn’t a deaf person call in using a TTY, and I realized that there was this huge gap in knowledge because deaf people, if you actually talked to or communicated with them and had a basic conversation with the community, you would know that deaf people don’t use TTYs anymore. Those are old pieces of machinery that my parents literally threw out ten years ago. So there’s this lack of knowledge and because I can communicate in sign language and I can speak out loud and hear, I felt like I was that person that could bridge that gap in access to tell people this is what the deaf community is facing and also communicate resources to the deaf community as they were made available.

Jason: So you did your background research, did your due diligence. Were you able to talk to any of the legacy providers? The big companies out there that are providing the technology? For example, the first one that comes to mind is Motorola, did you talk to any of these companies to find out what they were doing, if anything?

Gabriella: So companies like, I would give for example Intrado, they tried to build their own technology. I believe it was a mobile app to bridge that gap in access where you would download Intrado’s mobile app and it would work with legacy 9-1-1 call centers and somehow, I believe, translate that text to 9-1-1.

But deaf people didn’t know about the app, and Intrado, I believe but I’m not positive, they saw that this wasn’t profitable and so marketing it to people who lack access to 9-1-1 wasn’t in their best business interest.

So that’s where we serve, that gap in the market that isn’t profitable, it doesn’t have revenue, but we see it as our mission and calling because we know there is a need.

Jason: Right. So how did it work? We are both graduates of Columbia Mailman School of Public Health, and I remember that I got a phone call from you, this was years ago, about you had this idea and somebody at Columbia told you that I was involved in emergency response and we should talk. I remember that conversation because you were asking a lot of very good questions, but then I didn’t hear from you for a while.

So I’m wondering if you could share how this actually worked. How did you gor from inspired, righteous indignation at what’s going on and how people are being left out, from that to background research, asking questions, and ultimately to the “we are going to build it” stage?

Gabriella: I remember that conversation we had, Jason, I think you were in [Washington] D.C. at the time and I remember you specifically saying that this use case that we were trying to solve was absolutely needed, and hearing that from you because you work in emergency and crisis response was very encouraging.

During the time where it all started, just from the thought in my mind to actually implementing it and launching it, it really just all came about because we were looking at those gaps and what could we do to solve those gaps.

Initially I thought it was going to be sort of policy work or advocacy work that I did on the side. But then I would talk to people that had influence on the policy side and the advocacy side, so folks like the National Deaf Organization, people in the National Emergency Number Association [NENA], people adjacent to the Federal Communications Commission, and I would ask them if we could pass some sort of policy update or change the way the ADA recommends TTYs, because again that’s old technology. I’d ask these things and what I was finding again and again and again was that even if some sort of magical policy was passed and mandated that 9-1-1 call centers should implement text to 9-1-1 within a week, that they would not be able to do it. They are too fragmented, they’re under-resourced, they’re under-staffed, they lack the budget and equipment to upgrade their systems to text to 9-1-1. So that’s when we realized, okay, maybe a technology solution is something that we should build on our own, and what would that look like? Where do we even begin?

My background is that I’ve done a little bit of coding myself, but I had a friend from when I lived in Pittsburgh who knew how to code and made mobile apps. So I talked to her about this problem and about what we could possibly build but we had no idea. So from there, I did just a lot of research and talked to our deaf and hard of hearing community members, I talked to friends and just anyone who would be willing to talk to me about what the solutions could possibly look like, as well as talking to 9-1-1 dispatchers and seeing what gaps they were facing. Those 9-1-1 dispatchers at call centers that had text message capabilities, what were their pain points too.

Ultimately, the main themes we found were people wanted something that was icon driven because pictures were easier to process. People wanted something that had big buttons that quickly contacted their 9-1-1 call center and wanted it to just be one big button. But then we talked to 9-1-1 call centers and call takers themselves who told us one button for help would not help them at all get the information they needed. They wouldn’t know where they were located, what type of service they needed, if they were unconscious, just more contextual information was needed. So we had to find a balance of what the user wants and what the 9-1-1 dispatcher needs.

So we created the AccesSOS app to have that functionality of being really easy to use, being icon driven, picking thoughtful icons and pictures so that the person having the emergency knows what to click even if they can’t read English, and also making sure we guide the person through the process to give the dispatcher the right amount of information so that they can send the proper help, quickly.

It was definitely a lot of talking to many people, putting ourselves out there and coming up with the solution and then continuing to iterate on that. So making wire frames, showing people how to use them and watching them test the wire frames, then realizing that we were making some mistakes and changing and iterating until we came to this version of the AccesSOS app that we have today.

Jason: It sounds like you did a lot of work beforehand, you know, before you even started writing code for the app. How long was it between that idea stage and writing your first lines of code?

Gabriella: I would say roughly, a little under a year. Because we didn’t want to build something that people didn’t want and we didn’t want to waste time and resources to build something that wouldn’t ultimately work.

Like, if we started coding on day five of the idea, what we would have built would have been something for people to send videos and photos and pictures, and then we would have talked to someone at a 9-1-1 call center and realized we were building something with information they don’t have the technology to receive and it would have all gone to waste.

So it’s a balance of really understanding the technology, what’s possible, and dreaming big but then coming down to reality and also making something that people really want and that is functional for those on the receiving end.

Jason: That makes a lot of sense. In our case, we started building a technology based on what was already being done, so we were not pioneering anything, we were just adapting it. But you were building something from scratch which is a whole other process. Where is the app at now, where is AccesSOS at today?

Gabriella: Where it’s at today is our app is launched in Santa Fe, New Mexico. It is a mobile web app, so it’s not quite an app that you go to the app store or play store to download, and the reason we went with that approach is because the thought of someone in an emergency needing to go to the app store, download our app, wait for that download, then remember a password and email to log in, then finally getting to report the emergency, that just kept me up at night. So we thought the mobile web app, a quick easy to remember website, contact911.org, would be best.

So if you are in Santa Fe you can go to the site directly or we have QR codes placed around town or you could put in your home that you scan if you have an emergency to take you to the app and quickly report that emergency.

We get all the location-based data from the phones’ geo-coordinates, which came from user feedback from dispatchers that people having an emergency are potentially not in an area with an address or wouldn’t know the longitude and latitude coordinates, so wanting an accurate location was vital and the geo coordinates were the best bet.

The person reports if it’s a medical emergency, a police emergency, fire emergency, or maybe a situation where all three are needed, and they can quickly send that information. We translate that data into a phone call to 9-1-1 in Santa Fe.

So far we’ve had about 700 adds to phone homescreen which is what we count as our web app downloads, and two emergency calls using our app. So we just launched very recently, but that’s what we have right now.

As for where we want to go in the future, again from talking to our deaf and hard of hearing community members and finding out there are situations where they really don’t want to use our app to be frank, especially for police encounters because the thought of an armed police law enforcement showing up and maybe losing that information that the person that is requesting help is a deaf person, maybe the officer says something out loud, gives directions out loud, and the person is not responding because they can’t hear and something escalates and someone gets hurt. So that’s where we find ourselves thinking about the future direction of the AccesSOS app and requests for help. Maybe we start to look at people that are trained in specific crisis response and not always default to law enforcement.

Jason: Wow, that’s a really interesting scenario that sounds very plausible. What did it take to get Santa Fe 9-1-1 on board? Anyone who has worked with municipalities knows that it’s oftentimes a long process with a lot of people who need to sign off, so for your first program to be with a pretty big city 9-1-1 is no small accomplishment. Could you share a little about how that played out?

Gabriella: It really played out from persistence and luck, a combination of both of those. With the persistence piece, finding who in Santa Fe were the key decision-makers, the key stakeholders, I was working with websites that were last updated years ago and the people finding was tough. Making cold calls and cold emails to people whose emails didn’t work, that was frustrating. So finding who those key decision-makers actually were today, in real time, that was the persistence piece.

And I should talk about why we launched in Santa Fe in the first place, because people might be like, “Why Santa Fe?”

If we look at the FCC, the Federal Communications Commissions, their text to 9-1-1 registry of who has text to 9-1-1 and who doesn’t, the state of New Mexico is completely left out. It doesn’t have text to 9-1-1 at all, and in my conversations with I found out it may take two years, five years, 10 years, they had no idea.

Then in Santa Fe itself, there is a New Mexico School for the Deaf, and they have deaf staff members and not all but many deaf children that live in this state attended school in Santa Fe. So that’s why we wanted to launch there. I talked before about the persistence piece of it, getting the New Mexico School for the Deaf to be our advocates was another piece of that. Going in person, making connections, which was particularly difficult during Covid because I personally think in-person interactions are way more impactful. But finding those advocates at the New Mexico School for the Deaf to advocate for our technology that was another piece.

Then the luck side of it came in with, I’m co-chair of the National Emergency Number Association’s Communication Modalities committee, and the person I replaced as co-chair happened to have transferred to the Santa Fe PSAP, so I had a warm connection to that person, really had that credibility and trusting working relationship with that person. So when I said, hey, we want to launch this in Santa Fe, that person was on board.

So a lot of magic, a lot of luck was involved, but also a lot of persistence.

Jason: Absolutely. That is quite a fortunate turn for you, no doubt about it. So you are now in Santa Fe with your first launch, and are you looking to launch in other locations or are you sticking with this one to see how it goes? I imagine it’s the kind of thing where the more volume you have, the more experience you’re getting, that helps a lot, and you also don’t want to find yourself in over your head, right? So how are you balancing those?

Gabriella: How we are balancing those two is really being thoughtful on where we launch next and really thinking about the future of this company as well.

So I mentioned previously that where we are now is our app calls 9-1-1, it delivers that information to 9-1-1. But hearing from our community members and communicating with them and finding that they don’t want law enforcement involved in certain situations, we’ve got to take that feedback into consideration as we grow.

So with our current version of the app we are thinking about a launch in Albuquerque and expanding in the state of New Mexico. But then we are also thinking about a pilot program for cities that have those alternatives to law enforcement response. So examples of that in say, San Francisco, are the street crisis response team, the homeless outreach team, the overdose response team. I live in San Francisco so I’m very aware of these alternatives and I just want our app to be able to connect people in need with those services.

So while we are thinking about expanding to the full state of New Mexico for the current iteration of the app, we are being mindful that we think that requesting help away from 9-1-1 for some particular situations is the future direction we are likely headed.

Jason: Interesting how you start down one path and then you see that there are actually a lot of other needs you can be meeting with the same exact technology.

Gabriella: Yes, pivoting is vital. Being an entrepreneur is really just being able to pivot.

Jason: Absolutely. We’ve done many of the same moves ourselves. Especially exactly what you’re talking about starting out working with formal emergency services in low- and middle-income countries and then seeing that there’s a lot of parallels between these alternative response groups in North America and they’re struggling with a lot of the same issues, particularly when it comes to technology, so that makes a lot of sense.

On that note, one thing you mentioned at the beginning was when you started you were thinking about policy and legislation, and we all know how slow that all happens. I’m wondering, has that thought changed? Do you still see that as a necessary component and do you see yourself playing any part in that or are you just leaving that to the side and sticking to programs and implementing the software and supporting the active groups?

Gabriella: I do think about it, I think about policy and advocacy a lot. But I’m now shifting my focus to think about how our app and the information it can gather can be the proof that the deaf and hard or hearing community need to be able to show they are being left out of accessing these emergency communication platforms. Thinking about how our app can show demand and influence decisions, maybe not federally, but locally.

My vision is getting the Mayor of Albuquerque, the Mayor of Santa Fe, to do something locally to make that chance and say, “Hey, we need this. Look how many deaf people are using this platform to contact emergency help. This is a need, we need to prioritize this in our city and in our state.”

So I think about that more locally than the way I approached it from the very beginning where I was trying to go to the FCC, going to the DOJ [U.S. Department of Justice], going to NENA. I think of it more now that our app could really help prove this concept, really show the data, the numbers that show that this is needed. So just thinking about that in a more local way versus my previous thought of this big vision, big picture thing.

Jason: How does the rollout of 988 impact what you are doing? Does it have any impact on you?

Gabriella: It has a huge impact and that is something that really shows the momentum of this. There has been data collected so far that 988 has had an increase in calls, an increase in chats, and an increase in text requests.

With 988 calls, be them calls, chats, or texts, there are certain situations where some sort of help is needed to be sent to the person. And rightfully so with the rollout of 988 they don’t know where that person is located and where they’re calling from. So when immediate help is needed to be sent to that person, and 988 doesn’t know where they are, that is the gap that we want to fill. If that person is willing to opt in and know that they could ask for help for mental health emergencies in particular through our app and connect with 988, that would be amazing.

Because right now if I personally were to contact or send a message to 988, I live in Pittsburgh but my number will get routed based on my mobile area code, which is my hometown of San Francisco. So if I had for instance a suicidal ideation. I have a plan, I’m ready to implement it, and I need some help, I need someone to come check in on me. If I contact 988 from where I live, in Pittsburgh, my call for help would get routed to San Francisco and that’s not helpful at all. So we want to help fill that gap, eliminate that inefficiency and make it really quick and accessible.

So we are excited about 988 and we can see ourselves filling in some gaps in access for their services and being a really great fit together.

Jason: And for those who don’t know, I should have said this before, but 988 is the suicide and crisis lifeline that is now the [U.S.] national number for people having suicidal ideations and mental health crisis.

Now you mentioned at the beginning that you are a non-profit technology organization. What types of funders are you finding willing to support what you’re doing? Is it government, is it private, corporate, individual? Where does your funding come from?

Gabriella: Our funding comes a lot from organizations or companies that have a corporate social responsibility arm. They see that our mission is to give access to people that are typically underserved and CSR, Corporate Social Responsibility, those arms of technology companies match up well with us.

We’ve also found success in getting funds from a combination of non-profit ventures, organizations that want to fund innovative ideas, as well as some individual donations.

Where we want to go in the future is some sort of earned income revenue. So we’re in talks to possibly have our first paying customer and really scaling that, but right now it’s a mixture of CSR grants, venture capital companies or foundations, and individual donors.

Jason: Makes a lot of sense, and that’s exactly what we’re doing as well, and really hoping long-term that we can turn this into earned revenue so that we can sustain ourselves.

Gabriella: Exactly. One other thing I forgot to mention which is a very big component of why we’re able to do the work we’re doing is universities and our volunteers that have been so generous with their time. Universities in the sense that partnering with universities like the University of San Francisco, UC Berkeley, Dartmouth, they all have some sort of program where they fund or encourage students to work for a nonprofit organization, whether it’s in design or engineering, and that has been so impactful for us.

Also volunteers that believe in our mission and are willing to give us translations, willing to do our design work, willing to do our user testing. So I want to say that their time has probably been the biggest impact on our organization.

Jason: Hands on deck, worth their weight in gold, I totally get that. So if there were an organization that listens to this and thinks they really need what AccesSOS has to offer, how would they go about contacting you, partnering with you? How do they contact you but then what would a partnership look like?

Gabriella: It all starts by just saying hello. You can contact us at our website, accessos.io, and from there you can fill out a partnerships form. You can also email me directly at [email protected]. Where those conversations start is really understanding what your needs are, what our technology is, and how we could work together for outreach to community members, because our app doesn’t work without your local community members buying in, period.

So understanding what your needs are, who we can talk to on the community side that have large constituents, and also in an emergency situation what resources are already out there for that community. We know there are ambulance and police everywhere, but does your area have alternatives like mobile crisis response teams, community members, escort services if you are in a university town and need someone to walk you home from the library late at night, just seeing what other resources are out there and talking about how we can connect our services with those to deliver the kind of help you are looking for.

Jason: Fantastic. Let’s say a community says, all right, we are in, we want to do this. I assume at some point they are going to introduce you to the 9-1-1 call center, that’s the goal, right? And what would a 9-1-1 call center want to know from you?

Gabriella: They’re probably going to ask us what equipment they need, do they need a plug-in, what they need to download, what they need to upgrade. And one thing I want to say is as long as you can receive a voice call you can receive information from our app.

That’s very important that I say. There is no integration there, there is no something you need to download. As long as you can receive a voice call you can receive information from our app.

Jason: Wow. That is a dream. No integration needed. All as long as they can receive a phone call they can plug into your technology, that is a smart design right there. My goodness.

We have the exact opposite problem, which as you’re well aware, is as the saying goes, “If you’ve seen one 9-1-1 call center, you’ve seen one 9-1-1 call center.” We learn every time we talk to one how true that saying is because everybody does it a little bit different. So for you to have a way to get past all that is really impressive – hats off to you.

So now you are looking at alternative deployments and you’re also looking at launching in new locations and new cities. What are your goals for the next year, for 2023?

Gabriella: For 2023, what we have right now is that our team has talked to multiple people in the crisis intervention response space, people in the 9-1-1 call taking space, people that have gone through mental health emergencies, and we have come up with a new design of the AccesSOS app and it’s to target people who see murky gray situations where maybe police should come, maybe an ambulance should come, but maybe an alternative like a street crisis response team should come. We want to be the go-to app, any murky situation where immediate help is needed, but they’re not sure what kind of help is needed, and so we’ve created a new design flow of the app where we probe and ask questions of the user and we ask what kind of help they need or want and then we make a decision on what kind of help should be sent.

That is in our future, but we need to partner with a city that has these resources that can meet those requests. So if it looks like someone is walking in an intersection erratically and maybe they’ll get hit by a car, but maybe they are having a mental health breakdown so law enforcement may not be needed for that situation. It might be someone that’s trained in communicating with someone that’s having a mental health emergency or breakdown. So we are looking for that city that’s willing to go that direction with us.

Jason: I hope that that won’t be all that hard because the reality of that situation, and one of the things that’s not always communicated for various reasons, is that law enforcement, EMS, fire, they don’t want to go to those calls, right? They would much rather have alternative responders going if that’s who’s best to serve that need. I know of a city in Texas that has told me when their mobile crisis response teams get on scene, that police applaud them, they’re so glad they’re there because now you have trained experts who can handle this and the police can leave.

Especially when you are talking about these mental health crises, those take very expert professionals to assist and de- escalate the situation. And first off, police and paramedics and fire fighters don’t have that training. And second, those calls can go on for a long time, and that’s tying up a law enforcement officer when there might be actual crimes that could really use a law enforcement officer to be there.

You know, a lot of people in the media like to have all this talk, trying to play the old us-and-them game a lot of times, but I think that there are a lot of cities out there that are actually quite relieved that we’re now having these discussions about alternative responders because they were never really trained well to handle them in the first place.

So it’s a really fantastic time for yourself and for everybody else who’s involved in this space to get in early and to make a big change and I think what you were saying earlier about the policy stuff too, oftentimes it’s the on-the-ground activities that are going to lead the policy changes and until they can see what’s actually happening it’s just all going to be abstract.

Gabriella: My thoughts exactly.

Jason: Well thank you Gabby, I really appreciate your time. Is there anything you’d like to share with listeners who may be trying to follow in your footsteps? Trying to create a service for at risk vulnerable marginalized populations or even budding tech entrepreneurs?

Gabriella: I want to say that if you have a vision and you see that there is a problem and that you want to address it. I think it takes courage. I think it takes a lot of hard work. It takes a lot of grit and really believing in yourself that if you have that vision to execute something and see something come to life, see something tangible being built, then I say that this is the role for you. We need more people that have lived experience, who have been in this space, who know that there’s a problem and have experienced the problem and can think of creative solutions to fix it. We need more of you out there. I know entrepreneurship is a really tough journey, but it’s incredibly rewarding when you see something that you’ve built come to life.

Jason: Absolutely. Something coming out of nothing can certainly keep you going a lot longer than many other jobs. Thank you so much, Gabby. I really appreciate it, and I look forward to keeping in touch with you and getting updates on how things are going!

Gabriella: Awesome, thank you Jason. Thanks so much for thinking of me to interview and allowing me to share my story, I so appreciate it.

Beacon emergency dispatch is a cloud-based, do-it-yourself platform for emergency services that alerts, coordinates and tracks prehospital personnel using any mobile phone, with or without internet.

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