Michael 0:00

This is the 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.

Ski Adams 0:33

Hello and welcome to the 35 Years of Community Living Podcast. My name is Ski Adams. I am a self-advocate with over 20 years advocating for people with disabilities. I am also assistant researcher at the Kansas University Center on Disabilities, where my advocacy skills are useful. I am your host for today. I am joined by the three principal investigators of the ongoing longitudinal data projects of national significance, otherwise known as PNS. These projects are authorized under the Developmental Disabilities Assistance and Bill of Rights Act to collect long-term national data on the priorities of people with intellectual and developmental disabilities and their families. Could you each please introduce yourselves?

Shea Tanis 1:24

Sure. Thank you, Ski, so much for having us today on the 35 Years of Community Living podcast. We're so excited to be here. My name is Shea Tanis, and I direct the State of the States in Intellectual and Developmental Disabilities, ongoing longitudinal data project at the University of Kansas. For over 40 years, our project has been collecting and analyzing data about the money spent by states and the nation in IDD or Intellectual and Developmental Disabilities, services and supports. We help to identify trends in spending and services like home and community-based services and technology. Otherwise, known what we do is we follow and track the money for advocates, caregivers, legislators, researchers, and practitioners. So they can use that information for policy, advocacy, innovation, and systems change. And I am thrilled to be here with my other partners at the other projects of national significance. Jean or Sherry?

Sherry Larsen 2:35

Hi, my name is Sherry Larson. I am a research manager at the University of Minnesota's Institute on Community Integration, and I'm the principal investigator of the Residential Information Systems Project. Our project has been going for 29, 49 years, excuse me, 49 years, and we look at where people with intellectual and developmental disabilities who are receiving services through state IDD agencies live, and we track also differences between children and adults and cost per person for services. I'm delighted to be here today to talk about the 35 years of community living project. Jean?

Jean Winsor 3:15

Thank you. I'm Jean Winsor, and I work for the Institute for Community Inclusion at the University of Massachusetts Boston. I'm a senior associate and I'm so proud and honored to lead our Access to Integrated Employment Project, a developmental disabilities project of national significance. And we focus on the most pressing issues related to employment for people with intellectual and developmental disabilities and their families. Since 1988, our access to integrated employment has described trends in day and employment services and outcomes for individuals with intellectual and developmental disabilities. We continue to explore the factors that contribute to employment outcomes at multiple levels, including the individual level, employment support practices, service provider engagement, and state policy reform. Our work also focuses on the collection of national data from state intellectual and developmental disabilities agencies related to the number of people who are receiving integrated employment services and other related services. And we conduct secondary data analysis on several federal data sets specifically to understand how people with intellectual and developmental disabilities are accessing employment and the wages and hours that they are working.

Ski Adams 4:37

Thank you for joining us. We are launching this podcast as part of the larger 35 years of community living project. Our goal is to humanize data by sharing stories of lived experience and explore the history and future of community living for people with intellectual and developmental disabilities and their families. Before we dive in, we need to ask: what exactly is community living?

Sherry Larsen 5:04

In recent decades, supports and services for people with intellectual and developmental disabilities have shifted from settings such as institutions, adult daycare facilities, and separate schools that isolated people from their families, friends, and community to services that support full inclusion and full participation in community life. Community living is the term we use to refer to supports that enable people with IDD to live, work, play, and go to school and contribute to our communities.

Shea Tanis 5:34

Ski, thanks so much for that question and Sherry for the definition. You know, as Sherry mentioned over the decades and really since the early 1980s, families and people with disabilities have desired access and equity in their surroundings. And this is more than just inclusion, but it's also belonging. It's not only what people with disabilities want, but we know from decades of research and practice that people who live in smaller settings and in their communities have more choices, control over their lives, they have more friendships, are engaged with their neighbors, are safer, healthier, and have meaningful jobs and experience really a greater quality of life. The community living really provides the opportunities so often denied when people with disabilities are isolated and segregated into what are intentional and institutional settings. So we look at it as an importance for our community. But it's really just not where you live. And Jean, I know you have some comments on this.

Jean Winsor 6:45

Thank you, Shea. I really appreciate your focus on belonging because belonging is what we all want to feel as a part of our community. We don't want to just be someplace physically, we want to feel connected to the people who are in that space with us. And that is why community living is such an important part of our data and the work that we do across our three projects. Because we're not just trying to measure numbers or people. We're really trying to measure how the system has improved opportunities for people to belong and to be a full part of their community and access all of the things that they need to in order to feel as though they are one with others.

Ski Adams 7:40

Each of your longitudinal data projects capture different aspects of community living. Why is this data so important? Why can't we just ask individuals about their personal experiences?

Shea Tanis 7:54

Yeah, these personal experiences, Ski, are so important. The personal stories give us really the why. And the data helps provide the big picture of the how. In other words, personal stories are the heart and the data is the evidence. The data really allows us to validate those stories beyond a single case and demonstrates the scale of what people are experiencing, what is working in our publicly funded systems, and what's not working and needs to be changed. Together, both the data and the personal stories are our most formidable tools for systemic accountability and reform. Longitudinal data also allows us a look back, and we can learn from our history and ensure that we do not repeat the errors of the past. It is a tremendous value to have this large scale and have three projects of large-scale data collection. Our national, state, and data translates policy and for our project, financial budgetary details, into accessible public tools that can be used for action. This is how we really bridge the gap between what is and what must be, ensuring that every system we fund publicly is authentically driven by the people that it is expected to serve. Jean, what are your thoughts?

Jean Winsor 9:22

I think one of the values of data is how it can provide us with aha moments. Um, both those aha moments where we are seeing progress, where we are seeing change in where people are living and where people are working and where state agencies are spending their money, but also those aha moments that help us to uncover barriers that impact people's ability to truly live the lives that they want to in the community. One of the data points that we look at is related to employment and where people are living. And we are so fortunate that we have a partnership with the National Core Indicators Project. And one of the pieces that their aid their data is able to tell us is that people who are living independently in their own small homes are more likely to have an individual job in the community. And that is a really exciting and positive aha moment. But it also tells us that people that live in provider-controlled residential settings are less likely to have an individual job in the community. And it helps us to understand that as we're talking about employment and addressing opportunities to grow the employment opportunities for individuals with intellectual and developmental disabilities, that we also have to work with our partners across different systems, including residential and education, so that people are able to have all of the opportunities that they'd like available to them, both living in the community and also working in the community.

Sherry Larsen 11:06

Thanks, Jean. Our projects have some other functions as well. The longitudinal data projects of national significance provide federal and state policymakers with information about the extent to which public investments in supports and services are achieving the outcomes they are intended to achieve. Do people live with their families in their own homes, with a host or foster family, or with a couple of people they choose in a small group home? Do people who want to work get the help they need to find and keep jobs? Do people have internet access and access to technology that will help them live as independently as possible? Our projects monitor these outcomes. Our projects work alongside our partners in every state who are also funded by the Developmental Disabilities Act. For example, our data helps the University Centers of Excellence in Developmental Disabilities to frame and inform their research, training, and technical assistance activities. We also assist governors' planning councils on developmental disabilities as they develop five-year plans for policy initiatives in their states. And we assist state protection and advocacy agencies in each state as they seek to uphold the civil and legal rights of people with intellectual and developmental disabilities.

Ski Adams 12:21

Tell me more about the Developmental Disabilities Act. How does it connect to community living?

Jean Winsor 12:28

Thanks, Ski. I think that that's a great question. And Sherry, thank you so much for that broad overview of the Developmental Disabilities Act partners. I think one of the most important pieces about how we all, state councils on developmental disabilities, protection and advocacy systems, university centers of excellence and developmental disabilities, as well as projects of national significance, that we all are looking intentionally at the things that individuals and families say that they are important to them. And we use that information to shape policies and provide education around them. We regularly partner across the different parts of the act. Um, I know that each one of our projects intersects intentionally with our state councils on developmental disabilities, not just within the states that we are our projects are housed in, but with state councils on developmental disabilities across the country. The same with our protection and advocacy systems. Each one of us is housed in our university center for excellence and developmental disabilities education, research, and service, our USAIDs. And these are wonderful opportunities for us to not only work across our individual projects, but also to spread our knowledge across the USAD network and to influence research that is happening in other parts of our country so that we really help to provide a broad sense and setting, not just in the states where we're located, not just within our individual projects, but across the full ecosystem of the Developmental Disabilities Act. And I think that that is one of the most exciting parts about the work that we all do. And Sherry, I'm sure, or Shay, I'm sure you have some additional thoughts about this.

Shea Tanis 14:32

I I do, but I'm gonna let Sherry speak a little bit about kind of the variations across the states because we think it's an important aspect that we look at and one that we are very intentional about discussing across the three projects of national significance. Sherry?

Sherry Larsen 14:53

Hi, Shea, thanks. Um yeah, our projects clearly show that states are different in many ways, and that those differences create variations in just about any outcome we measure, from the likelihood that a person with IDD will be served by their state IDD system to the per capita spending on services and supports for people with IDD, to the likelihood that a person with IDD will be supported to work in competitive integrated employment. This is why our projects collect and report not just national trends, but also state-to-state variations. It's also important for us to collect that information because individual states use our data in their planning activities.

Shea Tanis 15:31

Yeah, thanks, Sherry. I don't think we can emphasize enough the stark differences across the states and how you really have to understand their background, both budgetary as well as programmatically, to help them in their kind of customization of their project planning, their budgetary cycles, and programs. You know, we really look, each one of our projects really looks at real applications of how the data supports the priorities of people with lived experiences and their allies. When states look at difficult budgetary decisions, they look to the services like competitive integrated employment, technology solutions, and settings that are more integrated in the set in the integrated in their approach and integrated settings to provide efficient and effective use of those public dollars. When states are shifting to more integrated settings, longitudinal data can and the project trends and timelines can help to direct and inform about how those reforms can happen and best practices. We also use the data to really identify the future needs of our partners. As Jean and Sherry really highlighted, the Didi Act allows us to be a data-driven ecosystem, a really important aspect that we are using the data to help drive evidence-based practices and support individuals in the way they want to be supported. And so that's really an important aspect that without this beautiful cohesive DD Act that pulls upon research, practice, systems change, and protecting the rights of people with disabilities, it is really driving our goals to our towards what is community living and autonomy. So thanks for those important questions.

Ski Adams 17:32

That brings us to this major initiative, combining all your project data into one collective publication and resource hub. Why is this specific moment in time so important? What do we mean by 35 years?

Sherry Larsen 17:48

Yeah, Ski, the our work is funded by the Administration on Community Living. Five years ago, ACL asked our projects to collaborate on a book that described how supports and services had changed in the years since ACL began funding our projects. It has now been five years since that first report was published, and a lot has changed. Federal and state priorities have shifted with changes in elected officials, and the COVID-19 pandemic and public health emergency was the defining event of this generation, changing everything from health care to where and how we work to the role of technology in our lives. It was time to look at the system of supports and services again to see what changed and what didn't change during this period.

Jean Winsor 18:33

Thanks, Sherry. And I feel like one of my favorite parts of the 35 Years report is the timeline of events where we lay out over the past over 30 35 years the most important policy and systems activities that have impacted the lives of individuals with intellectual and developmental disabilities. And when I look at that timeline and I map that timeline to my data on employment, I can see some of the real world impacts of strengthening our employment and community living policies for people with intellectual and developmental disabilities. When I look at data from 2014 forwards, I can see the impact of the home and community-based settings rule and the importance of people having opportunities to make real informed choices about living in their community and working in their community and where they spend their time when they're not working. We continue to see since that point in time in 2014, more people with intellectual and developmental disabilities receiving the services and supports that they need to be working. And I feel like that is one of the most important pieces of data that we can highlight. And then we're able to talk to individuals and hear their stories about what has changed in their lives as a result of their policy, that policy. How has better individual planning services impacted them? How has the opportunity to have informed choices and try multiple different types of jobs and day activities impacted the outcomes that they're experiencing today? That policy timeline really does let us show our trajectory. And I'm looking forward to when we have an opportunity to create our 40 years of community living report to continue to see that progress that we are going to be making over the next five years.

Sherry Larsen 20:52

Jean, this is Sherry. I just wanted to add on to what you were talking about. I think the the home and community-based services rule that was promulgated in 2014 was absolutely a critical uh served as a sea change in really how services, home and community-based services were provided to people with intellectual and developmental disabilities. We made a huge investment as a country in making sure that the money that we spend for home and community-based services is provided to people who are living in settings that are integrated into their communities, that are they're provided to people who are working in jobs, in real job settings, and that we are actually getting from that policy what we wanted from that policy. I think if without the national longitudinal national data projects of national significance, without the longitudinal data projects of national significance, it would be very difficult to demonstrate whether that policy made a difference or not.

Ski Adams 21:50

This is why human stories are so vital. It seems your work has been very intentional in ensuring that lived experience drives the conversation.

Shea Tanis 22:00

Thanks, Ski. Yeah, absolutely. You know, data is often considered a silent partner in a lot of activities. Everybody wants it and needs it. But yet it doesn't get the glory that a lot of other projects per se will. But our work is really not only on the community, but it's designed by them and for them. Every one of our initiatives and the data we collect through all the projects of national significance reflects the direct priorities of those with lived experience. We do operate under the fundamental truth that the only real experts on disability are the individuals living that journey every day. We all support nothing about us without us. This project of 35 years includes an advisory council of nine self-advocates and allies that we meet with on a bi-weekly basis to really drive the 35 years of community living project and its supplementary materials. It is core to what we are doing within this project. And to a sideline observer, the barriers to equity are often invisible. Many don't realize the intricate array of specific supports and specialized services required for many individuals to gain full, equitable access to their environments. True inclusion is really not about being present in a space. It's about reshaping the world that we live in, to belong, to have autonomy, and to have opportunities that are natural in everyday experiences. All of our PNSs have spent decades in partnership with the disability community, our allies, and driving and ensuring that inclusive research partnerships, authentic programs and dialogue and access are paramount. And we do the, we exemplify, we really strive to exemplify that in all the activities that we do.

Ski Adams 24:13

What are your hopes for this effort to share data alongside the stories of people with intellectual and developmental disabilities?

Jean Winsor 24:22

I am so excited about the book itself, the 35 Years of a Community Living Report, but I'm also so excited for its companion products. Um this podcast and the podcast series being one of them. But we also have individual stories that we'll be telling alongside of the book, as well as some new infographics that will help everyone who is accessing the book and these materials to be able to use them and their everyday lives to help educate others and spread the message about community living and the importance of it within the lives of people with disabilities.

Sherry Larsen 25:05

I agree, Jean. I while much has changed in the last five years, the needs of people with intellectual and developmental disabilities have not changed. I hope this book will show the areas in which we've made progress and the areas in which federal and state policy initiatives are still needed to support people with IDD to fully participate in and contribute to our communities. I also hope that the book amplifies the voices of people with IDD who are partnering with us to create the message in this book.

Shea Tanis 25:34

Yeah, thanks, Jean and Sherry. You know, I we're at a critical moment in time in our political landscape and the things that we do, that we really have to add external emphasis around the importance of all to be included. You know, through the dual power of human stories and our robust, reliable data sets, we're really constructing the evidence base for this reality that people with disabilities have the agency to navigate their life on their own terms, um, supported by the systems that value their experience and their expertise. And we don't just really want to use these tools to observe what's going on in the world. We want to use them to reshape it. And, you know, our hope is really in alignment with our partners and the other projects of national significance that this 35 years of community living, its companion pieces, and the relationships built as we develop this can really support in that effort of having a broader world where you know everybody has the opportunities to achieve, to strive, and to live the lives they want.

Ski Adams 26:54

Thank you all for being here today to introduce the 35 years of community living project. In upcoming episodes, we will dive deeper into key areas, including where people live and work, how public supports are funded, and how people use emerging technologies to live the lives they want.

Shea Tanis 27:14

Thank you, Ski, and and thank you to my strong partners over at the other projects of national significance. It is absolutely a pleasure and privilege to work alongside you. And thank you to the Administration on Community Living for the opportunities we have.

Michael 27:32

Thank you for listening to 35 Years of Community Living. This series is produced by the State of the States 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 and IDD at the University of Kansas. Support for this project comes from the Administration for Community Living, U.S. Department of Health and Human Services, under Cooperative Agreement, No. 90 DNPA 00005-010. 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.