Tracking Tech: The role of technology in high-quality community living

Technology can open doors to communication, employment, independence and belonging—but only when people have access to the tools and support they need.

In this episode of 35 Years of Community Living, State of the States researcher Kaylee Day talks with self-advocates Jocelyn Bowen and Mikelle Learned about how technology has shaped their lives and their connections to the community. They discuss everything from smartphones and communication devices to simple low-tech tools, as well as the training, programming and ongoing support that make technology truly useful.

The conversation also looks at what the data tells us about public investment in technology for people with intellectual and developmental disabilities—and why expanding access means investing not just in devices, but in people.

As Mikelle puts it: “Technology doesn’t create belonging—people do. Technology just removes barriers so we can find one another.”

Transcript

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00;00;00;00 - 00;00;33;13
Michael (intro)
This is for 35 years of Community living. Podcast through data and storytelling. We explore how community inclusion has shaped the lives of people with intellectual and developmental disabilities across the country. It's the story of how policy, data and real lives intersect and why community matters for all of us. Thanks for listening. Let's get started.

00;00;33;13 - 00;00;52;19
Unknown
hello and welcome to the 35 Years of Community Living podcast. My name is Kaylee Day, and I'm a research project coordinator with the state of the States project at the University of Kansas. For over 40 years, our team has tracked the money spent across the country on services for people with intellectual and developmental disabilities, or IDD.

00;00;52;21 - 00;01;11;16
Kaley
We also look at trends in where people live, how they are supported and how they use technology. Technology has truly changed the way that we all learn, work, play and live. Today, having access to technology is not a luxury. It is a basic tool that helps people make their own choices and live a good life in their community.

00;01;11;19 - 00;01;37;17
Kaley
We use technology every single day, from the alarms that wake us up in the morning, to the networks that keep us connected to our friends and families. Even though technology is everywhere, many people with disabilities are still being left out. This happens because devices cost too much government rules are complicated. People have negative attitudes about disability and technology, or the technology itself is just too hard to use.

00;01;37;19 - 00;02;01;15
Kaley
Since 2007, our project to track how much money states spend on technology we want to answer an important question is public funding actually paying for the modern tech tools that people need to live independently? In today's world? Joining me today are two people who show us exactly why this work matters. They are not just my colleagues. They are true leaders who show everyone what is possible.

00;02;01;15 - 00;02;06;25
Kaley
When we combine modern tools with real life experience. Jocelyn Bowen and Mikelle Learned,
could you please introduce yourselves?

00;02;09;00 - 00;02;41;06
Jocelyn
Hi, I'm Jocelyn. Thank you for inviting me here today. I'm a big advocate in the AI community, and I hope today I can also, you know, discuss and clear up some things about technology and how it is accessible.

00;02;41;06 - 00;02;42;09
Kaley
Awesome, thanks Jocelyn. Mikelle?

00;02;42;09 - 00;02;46;15
Mikelle
I'm excited about technology that helps people do what they want to do when they want to do it. I kind of like the idea of a robot that I can tell what to do. That way I don't always have to ask for help.

00;02;46;15 - 00;02;49;11
Mikelle
Technology is about connection,

00;02;49;11 - 00;02;53;08
Mikelle
I don't want technology to be too hard to use.

00;02;53;08 - 00;03;00;20
Mikelle
It will never replace my morning coffee time with friends and family, but it does make belonging easier.

00;03;01;10 - 00;03;05;08
Kaley
Awesome. Thank you, Jocelyn and Mikelle, we're so happy to have you both here with us.

00;03;05;09 - 00;03;24;17
Kaley
So getting started, we want to know, like, why we are tracking data about technology. And starting with that, the data is clear. It shows us that people with disabilities are being left out of this technology age. National numbers consistently show a gap in technology access between people with disabilities and people without. So let me start by asking you both: if technology is supposed to make things equal for everyone, why do you think people with disabilities are still being left behind? Have you had a different experience from others in accessing technology yourselves?

00;03;41;09 - 00;04;16;12
Jocelyn
Yeah. I guess I'll start off with this question. Honestly, growing up, it was hard for me. You know, with technology. I came from a lifestyle where I actually never had a phone till I was a lot older and honestly see, my siblings. Being able to chat with their friends socialize was a bit hard because for me, I had to actually, like, be in person talk to my friends and actually, like, make plans in person with face to face conversation.

00;04;16;14 - 00;04;20;03
Jocelyn
So it did make it hard to communicate growing up.

00;04;20;23 - 00;04;22;25
Kaley
Thanks, Jocelyn. Yeah, that really shows us how much ease and how much easier technology can make just being able to be a part of your community. What about you Mikelle?

00;04;30;17 - 00;05;05;17
Mikelle
People often think technology gave me a voice. It didn't. I always had one. Technology finally gave the rest of the world a way to hear it. It's about my family, friends, professionals, and support team learning a second language - my language. So I can build the life I've always dreamed of. Technology didn't create my independence - it helped reveal it. 

00;05;13;07 - 00;05;45;17
Kaley
I love that Jocelyn, that technology is not what gave you those things but what supported them and revealed them. So really, at the State of the States, we've spent nearly two decades creating this national data picture of technology access and funding streams and skill building 0 actually building the skills to use technology. So I want to talk about the why: Why would it be important to know about technology access and use? That is, from your personal experiences, how does access to technology shape your opportunities and support a sense of belonging in the community? How does technology help you feel like you belong? 

00;05;47;21 - 00;06;10;21
Jocelyn
Yeah. I'll start off. I feel like technology has really helped me belong. As I stated earlier in my introduction about my siblings is, you know, growing up, you know, I didn't have a phone for 21 years. And for a lot of people listening they're like- got to be like, oh, 21. It actually made it very hard

00;06;10;21 - 00;06;45;17
Jocelyn
When I did get a phone, because it gave me access to a whole wide range of communications and socializing, that for a long time I had to do in person, but I saw that it gave me the experience to be able to expand and broaden, you know, technology in my own way. And I was able to improve. I was able to, you know, make those dates, make friends, make plans, and even got a job in technology.

00;06;45;24 - 00;10;52;09
Jocelyn
So really helped me feel more in a community that I was really interested. But until I had the access to that technology, I felt really isolated in a way that, you know, I can reflect on. And I hope others who are listening can feel the same way too, or have felt the same way.

00;07;07;13 - 00;08;15;12
Mikelle
People often think technology means buying an iPad or another device. From my experience, technology is much bigger than that. It incudes low tech tools, high tech communication, smart decides, apps, and the people who make them all work together. One of my favorite pieces of technology is actually very simple. I have a banner that velcroes onto my wheel chair that says "Ask me about my bracelets". It starts conversations everywhere I go. People stop, ask questions, and before long, we're talking about my jewelry, my work, or just life. Sometimes the simplest technology opens the biggest doors. Technology doesn't create belonging - people do. Technology just removes barriers so we can find one another. 

00;08;17;15 - 00;08;56;10
Kaley
I love that. I think you both made like, really important points that we like to talk about in this work. Really, like you said Mikelle, that whole spectrum of technology from low tech to high tech and how what seems like a very simple tool, like being able to velcro a banner to the front that opens up those conversations and connections with other people. And the other point that I think you mentioned Jocelyn is how technology - a lack of access to to technology creates these barriers, especially in this world today, where that's how so many people are now communicating and finding their communities and finding connection. 

00;08;57;08 - 00;09;31;11
Kaley
Y'know I think we often, when it comes to disability history and we think of the history of people being in institutions, we think of those really tangible four walls that people were kept in. And now we do have more people living in the community, but without access to technology and those connections that it is able to support, we're kinda creating these digital institutions, these digitals barriers between people with disabilities and the community as a whole. So, I think you both - both of your experiences bring up such important points when thinking about this work and the importance of it. 

00;09;33;08 - 
Kaley
So we've established now that certainly access to technology is essential for community inclusion. Yet those systemic barriers in policy and practice really continue to stand in the way. This realization is exactly what drove the shift toward technology for systems change. This is work we do throughout the country to really change policies, programs, the ecosystems that create this barriers and ensure that they are fundamentally shifted and knocked down. Longitudinal data - and that, longitudinal data is data that is collected over a long period of time -  from the states investing heavily in technology revels a pretty critical insight and that's that cost is only part of the problem. Infrastructure without education falls short. That means we can have all the policies and the programs saying people have access to technology, but without the training and the support needed to actually make that successful, it doesn't quite work. We know that when individuals with disabilities receive devices but lack the training to use them, we're simply replacing an access barrier with a knowledge barrier. So to help us ground this data in lived experience, could you both share how you personally learned to navigate and master the technology that you use?

00;10;52;09 - 00;11;51;13
Jocelyn
For me personally, you know, when I was able to have access to technology, it really did improve my day to day life situations, and it also allowed me to grow into the field of technology. I currently work with a large chat platform, and being able to have that opportunity with - due to the access of technology and, you know, learning the barriers of my own experience of overcoming that with not having technology - really gave me, I feel that, personalized experience to help others relate and connect and give them access, you know, of this knowledge or technology and the ability to perceive that technology isn't all that

00;11;51;13 - 00;12;43;05
Jocelyn
bad. It can actually be really helpful in ways that many don't think that it could be helpful. And now having a job in technology and helping other people get that access and learn about the technology and make new ways where we can innovate technology to help people in the community. It's really awesome because I'm able to take my own experience and help show people that there can be a change in a way that makes technology use usable for them and others in ways of personal connections, jobs, socializing, going out, and doing things that what may not be possible without the use of technology.

00;12;44;25 - 00;12;55;17
Kaley
Yeah Jocelyn, I think that kind of peer support you mentioned is so key. Like being, y'know, you had to learn on your own but now being able to share that with others is huge. 

00;12;56;22 - 00;13;35;20
Mikelle
Technology helps me live the life I want. I allows me to communicate with my support team, , order coffee, shop online, manage my Etsy bracelet store, post on social media, and host my own podcast. I even have a page on my communication device dedicated to selling my bracelets because being an entrepreneur is part of who I am. Technology has helped me become a home owner, an employee, a business owner, an artist, a passionate advocate, and a podcaster. 

00;13;37;14 - 00;14;28;29
Kaley
Thank you Mikelle. So we really want to talk about how we're investing in the future of people with IDD through technology. And so, we know that money is being spent on typical IDD services like residential settings, employment support, therapies, but it's not as much as being spent on everyday technology and learning. Our State of the States data shows that out of $104 billion spent nationally, less than 1% goes to technology. That includes buying devices, training, and the maintenance and upkeep. Since technology runs almost everything we do in everyday life, does that less than 1% feel like enough of an investment for you? Do you think that we need to push for a higher percentage of spending towards technology? 

00;14;29;23 - 00;14;35;09
Jocelyn
That is such a great question. Kaley, and I do feel like, you know,

00;14;35;09 - 00;15;01;23
Jocelyn
the money going into technology and the community living. I do feel like it should be more shifted on the perspective of technology, because there's so much bias. And every everyone nowadays, you know, they need a cell phone, you know. Medical technology, for example, a lot of cell phones and personal devices are used for medical reasons.

00;15;01;23 - 00;16;04;07
Jocelyn
And not having that access to, you know, medical life saving devices, systems and whatnot, it's really difficult, I feel like, with where, you know, the money has been shifting throughout the course of the years, because it (to me), it seems it has almost came to a point, that technology's kind of being gate walled a bit; where people who should be able to access it can't because of, you know, reasons or, you know, things come up in their personal life or journey that somehow, you know, shows on a negative light that, oh, well, because this person is, you know, independent, but they have some, you know, communication issues or they have some, you

00;16;04;07 - 00;16;43;02
Jocelyn
know, problem that does it seem to be, oh, they need this technology where in fact, they actually do need that technology because it may give them, the opportunity and the path to grow even more into themselves. And where funding is now and where it could be... definitely I do think medically it should be provided more on a sore space for medical technologies, because nowadays we're getting into all this A.I. business.

00;16;43;02 - 00;17;04;20
Jocelyn
And, you know, A.I. support and for the medical world especially and the technology world, it's really now trying to bridge that gap. But the gap can't be bridged if the allocations are not going to the right groups. In a sense.

00;17;05;20 - 00;17;52;09
Mikelle
Learning my communication device didn't happen overnight and wasn't easy. It took a lot of practice with my family, teachers, therapists and support staff. Today, every new team member learns my communication system, almost like learning a second language, because my voice is my communication device. I use Fotello to create video tutorials for my staff to learn how I like things done. Instead of having to guess, they can learn directly from me. Technology doesn't just help me communicate, it helps me teach others. 

00;17;54;05 - 00;18;15;17
Kaley
Great. I love that you really took the training into your own hands, Mikelle, and because the way each of us use technology is unique to ourselves and our own lives and our own goals and everyday that your training should be unique to you too! So it's so cool to hear that you've developed your own technology training program. 

00;18;15;17 - 00;18;54;20
Kaley
So, thanks to our partnership with the National Association of State Directors of Developmental Disability Services (or NASDDDS), our data shows that the variety of technologies states fund has grown immensely since our 2019 survey, and a lot of that can certainly be attributed to the increase and the need to use more technology during the COVID-19 pandemic. So instead of basic tools, states are now investing more into smartphones, video conferencing, smart home technology, and wearable technologies. Which technologies are you guys most interested in seeing people with IDD use to increase their independence? 

00;18;56;22 - 00;19;42;16
Jocelyn
That is also another question, heh heh, and I'll start us off. I do feel that the way technologies is able to change the way people live with IDD is such a vast conversation that we may not be able to talk about it all in this podcast, but, for me at least, I feel that, as I stated a bit earlier, is the whole gate walling, having- living in a small bubble and have a little access of the larger bubble of technology.

00;19;42;19 - 00;20;22;00
Jocelyn
And I do feel like, you know, especially when the COVID pandemic happened and a lot of people started going online, it was a large change because now people are able to apply for jobs online, they know how to, you know, look for things to do. And I feel like what technologies, what technologies can do and I'm excited for, with the way people and the IDD community live is we're able to break down that wall and give an accessible path into technology

00;20;22;00 - 00;20;45;28
Jocelyn
so a lot more people can feel that they have an avenue of a new experience that could, you know, increase their, you know, chance and probability of accessing something that they may have never had access to before and improve their day to day lives.

00;20;47;28 - 00;20;59;21
Kaley
Yeah, so it sounds Jocelyn, like it's, for you it's less about like, any specific device or technology but really just how more access will create more opportunities and pathways for people. 

00;21;00;06 - 
Mikelle
Buying a communication device is only the beginning. People also need funding for programming, upgrades, repairs, internet access, training and technical support. I know how to use my communication device, but I don't program it myself. As my life changes, someone has to keep updating my vocabulary, adding new buttons and pages, programming features, and ensuring that my device grows along with me. Without that ongoing support, even the best technology eventually becomes outdated. Technology helps me manage my life. It isn't just an iPad or a wheelchair - it's my freedom. 

00;21;53;04 - 00;22;24;07
Jocelyn
You know, I love what you said, Mikelle. With that, because I do believe, you know, as myself, who works in technology and hearing that from someone else in the community who uses it more in their day to day personal life, it really does that clarify of how, you know - that way of technology can change the way people with IDD live with it.

00;22;24;10 - 00;22;54;17
Jocelyn
And I love that you brought up, you know, how it has to constantly be updated. There's other people behind the scenes, you know, adding the new buttons and whatnot. And coming from that kind of perspectives of a job in technology where I have the ability to, you know, help make those buttons, make the programs stay updated so everyone that uses it can still continue using it.

00;22;54;20 - 00;23;24;29
Jocelyn
It's really great to hear that, you know, that side of things, because I do feel like it does kind of make that wall between, you know. Oh, well, if it's not constantly updated, well then, yeah, it's going to be outdated to the point where it's no longer usable. And that in a way, is more of, the factor of technology not being seen as improving lives with IDD. So.

00;23;27;05 - 00;24;13;26
Kaley
Yeah, I think both of you speak to a big point that we try to make in our technology for systems change work, which is really elevating the voices of people like you and people with lived experience who have the experience using technology and know what works and what doesn't work, Ensuring that you guys become the next generation of technology experts and consultants. So that you can tell the companies and the people making the tech, like, "This works, this doesn't work, I need help fixing this." So that hopefully this accessibility comes built-in in the future, and isn't an add-on or something that's fixed or updated later on but that technology just comes to the person who needs it, ready to serve their unique needs and access. 

00;24;16;15 - 00;24;34;09
Kaley
So, the new 35 Years of Community Living book is all about learning from our past and making sure that every belongs in the future. If you could speak directly to a lawmaker today, what is one thing you would want to tell them to make it easier for people with disabilities to get and use technology?

00;24;34;21 - 00;25;13;24
Jocelyn
Well, I'd like to say a lot, but we won't have time for that, as I stated earlier. But I definitely feel like, you know, future recommendations, you know... it could be more of like, you know, the quest giving, the, you know, challenging ourselves and, you know, because with those challenges and the quest giving, you know, there is that dignity of risk, you know, the, fear of liability and danger around the technology that is sometimes really scary.

00;25;13;24 - 00;25;44;26
Jocelyn
I mean, nowadays, you see, like scam calls or scam emails that people don't really, in the IDD community, understand that if you click on that link, you may be at risk. So being able to have some way of understanding the accessibility of technology and knowing how it can support you in the right way instead of not understanding it, does come a lot with risk.

00;25;44;26 - 00;26;17;02
Jocelyn
And I feel like, again, the risk of technology has its pros and cons. There are good ways that it does help a lot, but there's also a bad ways it can impact sometimes that I do feel a lot of people sometimes don't understand about it. And I do feel like with more research into how those risk factors can be, you know, removed in a way that it is more safer and accessible.

00;26;17;04 - 00;26;47;23
Jocelyn
It's really where I feel like we need to start focusing on the technology aspect, because even though there may be minimal risk, again, the dignity of risk - minimal is better than potential endangering risk. And with that being - and included is also the factors of, you know, when technology is accessible to everybody in the ID community,

00;26;48;00 - 00;27;12;11
Jocelyn
what are ways that we can make it where it's easier to understand at a first learning experience versus going off into the deep end? And, you know, preventing injury and hurt and have security, without losing the opportunity while focusing on that security of risk.

00;27;13;27 - 00;28;30;13
Mikelle
I would tell lawmakers that technology is not a luxury - it is a civil right. Because I have access to technology, and because people invested in helping me learn to use it, I have a job, own my own home, run a small business, host a podcast, and contribute to my community. I like to work. I like living in my own home where I'm in charge. It also helps me be an advocate. I speak with legislators, share my story, and help people understand what is possible when people with disabilities have the right supports. Please continue investing in not only technology but also in the training, programming, and ongoing support that helps people like me use it. When you're investing in technology, you're investing in people. You're investing in communication, in employment, and in belonging - and that's an investment that benefits all of us. 

00;28;32;16 - 00;29;03;01
Kaley
Well I think you both kind of just dropped the mic for us! And y'know, in closing, I think today's discussion really reminds us that behind every number, behind this data we collect, is a real person's life. And to make true progress, federal, state and local leaders have to listen to people who have lived these experiences. We need to focus on putting technology first, teaching people how to use it, and funding it properly so that everyone can be independent. 

00;29;04;11 - 00;29;21;12
Kaley
Thank you so much Mikelle and Jocelyn for sharing your stories and contributing to the 35 Years of Community Living Project. In our future episodes, we'll keep diving deeper into where people live, where they work, and how public funding for IDD services works. 


00;29;22;11 - 00;29;58;09
Michael
Thank you for listening to 35 Years of Community Living. This series is produced by the State of the State in Intellectual and Developmental Disabilities, and guided by voices with lived experience. The 35 Years project is a collaboration between the National Residential Information Systems Project at the University of Minnesota, Big Work Access to Integrated Employment at UMass Boston and the State of the States in IDD at the University of Kansas.

00;29;58;12 - 00;30;43;08
Michael
Support for this project comes from the administration for Community Living. U.S. Department of Health and Human Services, under Cooperative Agreement Number 90, DNPA00005-01-00. The views expressed are those of the project and do not necessarily reflect official ACL policy. To learn more about the Projects of National Significance and the 35 Years project, visit ACL.gov. Please join us for our next episode soon.