Disability Employment Technical Assistance Center Podcast

About Disability Employment Technical Assistance Center Podcast

Conversations with leaders, practitioners, and advocates who are working to improve competitive, integrated employment and economic outcomes for people with disabilities.

Publisher

Disability Employment Technical Assistance Center Podcast

Category

education · government · society & culture

Language

en

Explicit

No

First episode

26 Jul 2021

Latest episode

18 Jun 2026

Latest episodes

10 episodes in the feed.

1. 

   18 Jun 2026

   From Readiness to Results: Career Development Considerations for Coaches

   We talk with Dan Middleton, Senior Director, Clinical Excellence, Planning and Development at the Catalight Research Institute, about job coaching versus career coaching.

2. 

   15 Jun 2026

   From Readiness to Results: Career Development Considerations for Job Seekers (and the People and Professionals Who Support Job Seekers)

   In this episode, DETAC Strategic Advisor Dan Middleton shares practical strategies for supporting people with disabilities in their career journeys and how individuals can play an active role in their own career advancement. Drawing on his experience, Dan highlights how tools such as apps, checklists, and planning supports can be introduced in practice and used on the job. The conversation also explores how people and professionals who provide supports can build shared understanding of these tools among job seekers and employers to drive success.

3. 

   3 Oct 2024

   Debunking Myths About Working and the Loss of Benefits

   We talk with Samantha Marino, a certified rehabilitation counselor, former Center for Independent Living staff member and an independent consultant on benefits management about some of the myths about employment and loss of benefits. She explains ways people can explore employment on a trial basis without endangering their benefits and programs that can preserve benefits when a person develops additional income.

4. 

   26 Sept 2024

   Employing People with Disabilities Through a Person-Centered Process: A Self Advocate’s Perspective

   We talk to DETAC's self-advocate advisor Nicole Leblanc, about her personal perspective on person-centered thinking and best practices for engaging people with disabilities through a person-centered process, particularly related to employment.

5. 

   31 Jul 2023

   Self Employment: the Spirit of Individual Enterprise, Part II

   About This Episode Sue Babin founded and runs a self-employment business incubator called “Self Employment: the Spirit of Individual Enterprise” in the state of Rhode Island. In this two-part interview, she goes over all aspects of the program: how the idea came to her, how she started the program, how she secured funding and transformed a pilot into a permanent program, how she produced customized training materials for people with disabilities on running your small business, marketing, the markers of success, case studies of people with disabilities who have created successful businesses for themselves and her advice on how to start such a program in your state. This is part two of this two-part interview. Part one in this series can be found here (https://aoddisabilityemploymenttacenter.com/self-employment-the-spirit-of-individual-enterprise-part-i/). Presenters Sue Babin has been working in the field of developmental disabilities for 40+ years. She was the administrator of the Office of Quality Assurance for the State Division of Developmental Disabilities (DDD) for 30 years advocating for the human rights of people with disabilities and overseeing investigations on abuse, neglect and mistreatment; administrator for supported employment statewide grants; program manager for Rhode Island’s Home and Community-Based Services (HCBS) waiver; and responsible for designing and implementing monitoring and quality improvement programs for DD community agencies. For the last 10 years she has been a Special Projects Coordinator for the Rhode Island Developmental Disabilities Council (RIDDC), staff to the Systems Advocacy Committee (SAC), and founder and Project Director for Rhode Island’s Self-Employment Business Incubator Project since 2018. Sue has a Masters Degree in Public Administration (MPA), is a graduate of Leadership Rhode Island’s Omnicron Class, and was a recipient in 2021 for Providence Business News (PBN’s) annual “Rhode Island Leaders and Achievers” Awards. Donald Taylor has been with TASH since 2014, where he is the Manager of Membership & Communications, responsible for membership and chapters, data systems and communication, and collaborates closely with other staff to make sure TASH systems support their work. Donald comes from a background of data systems, operations and business analysis, going back to the 1990s. Donald came to the world of disability while pursuing a degree in history. The history profession is deeply interested in the eugenics movement of the early twentieth century and fellow students studying biomedical systems of oppression inspired in him the desire to make a contribution to this aspect of social justice. Transcript Announcer: You’re listening to the AoD Disability Employment Technical Assistance Center podcast, where we learn from people who are working to improve competitive integrated employment and economic outcomes for people with disabilities. This is part two of our two-part interview with Sue Babin, the Special Projects Director with the Rhode Island Developmental Disabilities Council, where she founded and runs the program, Self Employment: the Spirit of Individual Enterprise. We go deep into the nuts-and-bolts of how to run a self-employment program and the value of self-employment for people with disabilities. [music plays] Sue Babin: Yeah. I can talk about some lessons that I learned early on. When I mentioned that that family, a couple of families had approached me I’ve always had some pretty good research skills and I had been in touch with Griffin Hammis and I knew a bunch of people from Griffin Hammis. And so I reached out to them initially and I asked, who are the states that are doing anything in the area of self-employment? And I also Googled self-employment and found some stuff on the small business administration and a few other national site site sites that had listed a couple of states. And I contacted them. So I talked to people over the telephone. I didn’t just look at what they had, but I actually called them and said, Hey, can you talk to me? And I asked a question that you asked, which is, what are the things that you would’ve done differently? What did you learn that from running this project that you didn’t have up and running? And what the number one thing that people said is it’s not so much about helping people to learn the business development skills as it is figuring out how to provide them with the ongoing support that they need from the purchase of materials to the selling platforms, to the assistance in thinking creatively about marketing and changing your marketing strategy, depending upon the needs of your customers. And then how do you provide people with the individualized support that they might need through staff or through a specific business expertise that they might have. And so, as I had said, we found that people that had self-directed supports had the most flexibility because they could hire somebody themselves that had marketing experience or business experience or someone that had strong community connections. So that type of ongoing support was really, really necessary. The other thing that, that we learned is that you need to hire the right staff that work in your project. You need to hire people that are good with folks with disabilities and could communicate with them and get them motivated to believe in themselves and inspired. You gotta be, you can’t be monotone. You gotta be, show that passion to come out in the way that you speak so that people are interested in what you have to say. I found that hiring family members, like I hired Claudia, who I mentioned, I hired Michael’s mom, Sheila, and I hired another mom. Why? Because they had firsthand experience in helping individuals with disabilities to start their own businesses. So they knew better than me what the challenges were. They lived it every day. They also knew how, what the shortcuts were, what worked and what didn’t work. So when you hire the right staff, that’s helpful. I mentioned that I hired a communications agency. That was really a helpful thing to do because I got individual stories like the one I mentioned for Renee. Michael has been on, he’s been on TV stations, he’s been in local newspapers, he’s been on national news. That’s really important stuff. And we hired, as I mentioned, Brian La Fauci, the person that was the former director of the Veterans Business Outreach Center, as well as other staff or other instructors that work worked for the small Business administration. Those are the right people. Hiring people from human service industry doesn’t make sense. That’s my background. You know, I know all about the DD world, but I don’t know too much about business development. So you need to hire people that come from that world, not necessarily human services. I think the other area that has always been an issue and will continue to be, is addressing family concerns about loss of SS s I benefits. You know, there’s a lot of myths out there, whether the person obtains a regular job in the community, or whether the person obtains employment by owning their own business, families are concerned about losing ss. S i, so there’s two components to that. One is the medical benefits that people have that’s covered under Medicaid. That one is a little bit easier because people can earn somewhere around $36,000 a year and still have Medicaid coverage for medical. So talking to families and letting them know, you don’t need to really worry about those benefits unless the person is approaching, you know, in $30,000 range of a business. Now we gotta talk about another alternative. The other aspect of social security, the income that people are concerned about is when you have income from a job or from owning your own business and your hours change every month, you, and even if they don’t, you need to report on a monthly basis to social security what your earnings are. When you own a business, you can deduct your expenses from allowable expenses from what it is that you report to Social Security. But then what will happen is your Social security check will be reduced in subsequent months. So that reporting stuff, parents get really nervous about that, and I think that they don’t understand that. The bottom line is when a person has a job or they have their own business and they’re earning more money than getting an Ss s I check every month, that’s more money in their pocket, which will help them to have a better quality of life to pay their bills, to then be able to buy other things that they need or want go on vacations. And just the same kinds of things that other people do in the community when they have income, that’s their own. And so addressing those social security concerns that families have is a really big issue that needs to be addressed upfront. The other lesson that we learned is constantly asking the people that are in our classes, what can we do better? You know, we ask that every after every class, what did you think of this class? What did you like about it? What did you learn? What didn’t you like? Is there something that we didn’t cover? And sometimes we hear from people about different things that help us to add something else on to our project. Like I mentioned about the outside marketplaces, we learned that as people said, well, I’m, I, I have a Facebook page, but nobody is buying my stuff. So we ask the question, well, how many people like your Facebook page? If it’s only a hundred people, that’s not a big market. You need to get more word out, you need to get more likes. Maybe you need to be selling your things in storefronts. Maybe you need to consider some outside marketplaces. So helping people to figure out how they can do those kinds of things is really important. And as the the group that organizes the self-employment project, you gotta be flexible and shift. Another thing that we learned, and through Covid, we were having in-person classes up until Covid, and sometimes transportation was an issue of getting people to be able to come, even despite the fact we live in Rhode Island and anybody can get anywhere in 50 minutes, 5, 0, 50. We don’t live in California or Florida where it’s really hard to get here. You can get here fast. And we were holding the classes in the central location within the state. When Covid happened, it put a stop to our program. We put our thinking caps on, and we said, let’s run them online. Nobody here ever heard of Zoom five years ago. It wasn’t something that people did, right? It, we do it every day, like it’s part of our every day. So we said, let’s try running these classes. With Zoom, we were able to get connect with a another project in another state that was giving away. I b m used computers to people to help people to be able to go online through Zoom chats. And so we were able to get a bunch of computers that we gave out to people that said, Hey, we wanna be in your class. I wanna be, I wanna stop my own business. And so we would distributed those computers to individuals and we showed them how to get online. And you know what? We found that online was better than being in person. Why we didn’t have to deal with transportation for one thing we had, it was much easier to be able to organize the classes and be able to have the person with a disability sitting there with their staff person than have worrying about transportation or other issues. And then we would just ship out the workbooks to people so that they were able to have the workbooks right in front of them. I think the other thing that is really important is making sure that your business development materials are in a format that people can understand. Lots of graphics, lots of pictures of other folks with disabilities holding up or showing what their business is, what they’re selling to the public so that people can see that not too many words on the screen. And staying in touch with other states to kind of rally support and also talk in general about, well, what are you doing and, and what problem areas are you’re running into? And even better, what are some solutions that you’ve thought of? So we are in touch with, I don’t know, five or six different states that across the country that are doing self-employment and just constantly asking them, how are you doing? What’s what? How would you handle this? What’s going on next? So you keep learning from from states as well as from some successful businesses such as John’s Crazy Socks out of New York or Cotis Cookies from Boston, Massachusetts to very successful entrepreneurs that do really well with marketing. And we actually have John and Mark Cronin from John’s Crazy sos socks teach One teach the social media class that we run because they do such a good, they, they’ve got a million dollar business that they’re running right now. And they market their socks not only all over the United States, but in other countries as well. So I think that they have creatively figured out how to utilize social media in the best way possible. So why not learn from people that know more than you? I think the other thing that we learned is that when you publicize success stories, you’re also creatively thinking about sustainability for your project. The more people that know about it, the more people that see it as a successful project, the more likely it is to continue to be stable and to grow and to be an entity for more people that are out there. Now, we’re at a point because of our visibility. We’ve got entities such as Skills for Rhode Island’s Future approaching us and saying, Hey, do you wanna be a partner with us? We need to have some partners that are connected with underrepresented populations, and you guys have a great track record. What a great compliment that is for people to reach out to us, the DD Council and say, will you be our partner? The other partners are all business groups. You know, all entities that run, you know, human resource organizations or business development programs, or run website agency, you know, all agencies that have nothing to do with human services, but everything to do with business support that people need. And when you publicize what you do, we’re also helping the, the individual entrepreneurs to be able to make, generate more income from themselves. And that’s really what this is about, showing that people with disabilities are small business owners and that they have value and can make contributions to the local economy, as well as improve their own individual financial futures. Donald Taylor: Tell us a little bit about your philosophy. Why self-employment? Sue Babin: As I mentioned earlier I got involved with self-employment because a couple of families had approached me when I first started working. Well, actually I wasn’t. I was there for a couple of years at the DD Council, and they had approached me about where do, how can I get some support from my son or daughter for self-employment? I have found over the last five years that self-employment is one of the best customized employment options that there are for an individual because it’s really looking at an individual’s hobby or interest or something that they’re so good at, and turning that into something that can be marketed to the general public and generate income from them for them. What happens lots of times with traditional employment for people is while people can do the job and get the job, they have difficulty socializing with their peers, and people feel isolated. They don’t necessarily feel like they’re part of that particular business. And many people get frustrated with that and, and are the first sometimes to get laid off or fired or when Covid happened, so many people lost their job here in Rhode Island and across the country, and that reverted people back to, you know, times that they hadn’t seen in years of just being depressed and not feeling like they were good enough. What happens with self-employment is that the person is the center. They’re passionate about their skill or their interest in a particular aspect of work. We’ve got, I got this young man, Nathan, who’s a podcaster. He loves it, and he does such a great job. He’s interviewing people that have gone through our project and helping them to create podcasts to put on their website. Sometimes they’re short, they’re five minutes, sometimes they’re like 20 minutes long. And he’s, he is absolutely loving that. He’s also getting some visibility from people without disabilities that are saying, Hey, I heard you got a podcast business. Can you help me to to expand and show my business on your podcast? So people are becoming, you know, seen as just regular folks. And that’s really the goal of why anybody should be in human services. I get in this business years ago because my cousin had cerebral palsy and my family at the time, the doctors were all telling my family, she’s not gonna amount to much. There are no community options for folks with cerebral falls or people who have disabilities. They’re gonna have to go to a spec special school. And my aunt didn’t wanna buy that. She said, absolutely not. She’s not going to a special school. And she fought for her to be integrated within a school system. Today, my cousin is employed, she’s married, she has a child. And so I grew up around that philosophy of believing that anything can happen for people if the right support is built around that individual, reach for the stars and you can get it. I was also very fortunate to go to a high school that was awesome at building the self-esteem of the students and teaching us to go for the sky, reach for the sky. You know, don’t give up, believe in yourself, figure things out, problem solve, teamwork, all of that stuff. And so when I got in the field of disabilities and I saw how folks were treated and bullied and victimized, I, my whole life work has been as an advocate for people with disabilities. Like I mentioned earlier, I ran the quality assurance unit investigating abuse of adults with disabilities as well as overseeing employment and the waiver. But the thing that really got me the most was how victimized people with disabilities were and just all of the myths out there from the general public who had limited contact with folks with disabilities. And what self-employment does is show the world that people with disabilities are no different. They have the same needs and wants as anybody else, and they’re great business owners with the right support. But that’s the same as with me. As I said on that restaurant, I could not have run that restaurant if I didn’t have all of those other people around to be able to help me with the areas that I had limited experience in. Donald Taylor: Where do people find out more about self-employment? The spirit of individual enterprise? Sue Babin: People can find out more information about the Rhode Island Developmental Disabilities Project by going to our website, www.riddc.org. Click on the employment tab. You will see a bunch of general information about our project. You’ll also see a really cool page that’s a collage of individuals. And under that collage of individuals are some individual newspaper stories that were have been on, on various small business owners, as well as some small short videos, two and three minute videos that we’ve created for people. You’ll also see a business directory that has about 50 of our businesses in there. Now. We just started with this business directory. It’s a work in progress and it’s categorized by areas of, of the business from home and garden to crafts to to soaps and candles and services house cleaning, pet sitting, podcasting, those kinds of things. So you can see that on our website as well as an event that we run called Small Business Saturday Shop ri, which is in November. It’s an event that’s open to the general public, and it’s it, the, the event that’s held on the Saturday after Thanksgiving, which is the big shopping week of the year. And in a day that American Express started 10 years ago to 11 years ago to focus attention on helping the community to support small businesses. And what most states do is have small business Saturday and have people from the legislature and the governor kind of go around to areas throughout the state, highlight what they’re doing. There’s a, there’s some hype about it. A couple of days before. What we did was, besides having that, we rented out our biggest hotel in the state. And we have an event every year. We rent space out to entrepreneurs. We’re already sold out this year for this year’s event in November. We have 162 vendors, and 34 will be people with disabilities, which is really cool. So you’ll see all of, you’ll see a great five minute video about that event, and that is something that any state in the country could replicate, and it’s a great way to help support the individual businesses. Most of our businesses make at least 500 bucks that day in selling their goods and products and services to the general public. Last year we had over 4,000 visitors come to that event. So again, on our website you’ll see that as well, as well as specific information about the individual classes and a brochure and just all sorts of other information and ways that you can get ahold of me personally. Donald Taylor: How does a prospective small business owner get referred to your program? Sue Babin: We get referrals from individual family. Well, first of all, what we do is develop a one page flyer that announces upcoming classes about six weeks before that business series, new business series is about to start. And so, as I mentioned earlier about the importance of keeping in touch with your partners, and one of the groups of, of agencies that I said is our partners is the community agencies here in Rhode Island that support individuals with disabilities, whether it’s on the adult services side or transition centers or high schools special ed programs, whatever. Those are partners, we get referrals from those agencies. So we send our flyer out to those agencies, we send the flyer out to family groups, to advocacy groups. We speak at community forums. Our state developmental disability agency runs quarterly forums. So we speak at that quarterly forum to let people know that there’s an upcoming business series. We put it up on our website, we utilize other social media. We typically ha we will have a newspaper story and some local newspapers. That upcoming series is, is about to happen. And so we get referrals from all of those kinds of, of, of entities as well as from individuals themselves. We sometimes will post those flyers in different community locations, grocery stores, churches healthcare facilities, and people will see the flyer. And it’s also by word of mouth people telling their friends, Hey, you might have an idea. Do you have a business? Or, why don’t you check this out? Why don’t you just talk to these guys? And they can help you to even think about whether or not you have a, an idea or something that could turn into a business. Donald Taylor: Sue Bein, thank you for talking with us today about how people with disabilities can pursue self-employment. Sue Babin: Thank you so much for having me on the show, Don. I really appreciate it. And I would, you know, also say to people, if you wanna get in touch with me, my email is suebabin@riddc.org, and my phone number is (401) 523-2300. And one more thing I didn’t say is we also have a speaker’s bureau with people with disabilities, almost 20 folks with disabilities that are entrepreneurs from Rhode Island that speak about their business, how they got it started, lessons they learned, advice that they would give to others, and how the business series has helped them. We speak to people all the time, we pay them for those speaking presentations, and we are happy to do that in any state that may be interested in listening to or connecting with us to hear more about hear more directly from individuals as well as some family members. Announcer: You’ve been listening to the AOD Disability Employment Technical Assistance Center podcast. This is part two of our two-part interview with Sue Babin, a Special Projects Director with the Rhode Island Developmental Disabilities Council, where she runs the program, Self Employment: the Spirit of Individual Enterprise. You can learn more about the program at riddc.org/self-employment-project (https://riddc.org/self-employment-project/). The AOD Disability, Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group (https://www.lewin.com/) and TASH (https://tash.org/), created by a grant from the Administration for Community Living (https://acl.gov/) to provide evidence based training and technical assistance to Administration on Disabilities (https://acl.gov/about-acl/administration-disabilities) grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AoDDisabilityEmploymentTACenter.com (https://aoddisabilityemploymenttacenter.com/) for news and alerts about upcoming webinars and podcasts. You can follow us on Facebook (https://www.facebook.com/AoDEmploymentTACntr) and Twitter (https://twitter.com/AoDEmployTACntr). Music for the DETAC Podcast is an original composition and performance by Sunny Cefaratti (https://themusicalautist.org/about-sunny/), the co-director and autistic self-advocacy mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org (https://themusicalautist.org/). We’ll have another episode on competitive integrated employment for you in the near future. [music plays] This discussion was originally recorded on June 26, 2023. This audio recording and transcript has been lightly edited for content and clarity.

6. 

   31 Jul 2023

   Self Employment: the Spirit of Individual Enterprise, Part I

   About This Episode Sue Babin founded and runs a self-employment business incubator called “Self Employment: the Spirit of Individual Enterprise” in the state of Rhode Island. In this two-part interview, she goes over all aspects of the program: how the idea came to her, how she started the program, how she secured funding and transformed a pilot into a permanent program, how she produced customized training materials for people with disabilities on running your small business, marketing, the markers of success, case studies of people with disabilities who have created successful businesses for themselves and her advice on how to start such a program in your state. Part two in this series can be found here (https://aoddisabilityemploymenttacenter.com/self-employment-the-spirit-of-individual-enterprise-part-ii/). Presenters Sue Babin has been working in the field of developmental disabilities for 40+ years. She was the administrator of the Office of Quality Assurance for the State Division of Developmental Disabilities (DDD) for 30 years advocating for the human rights of people with disabilities and overseeing investigations on abuse, neglect and mistreatment; administrator for supported employment statewide grants; program manager for Rhode Island’s Home and Community-Based Services (HCBS) waiver; and responsible for designing and implementing monitoring and quality improvement programs for DD community agencies. For the last 10 years she has been a Special Projects Coordinator for the Rhode Island Developmental Disabilities Council (RIDDC), staff to the Systems Advocacy Committee (SAC), and founder and Project Director for Rhode Island’s Self-Employment Business Incubator Project since 2018. Sue has a Masters Degree in Public Administration (MPA), is a graduate of Leadership Rhode Island’s Omnicron Class, and was a recipient in 2021 for Providence Business News (PBN’s) annual “Rhode Island Leaders and Achievers” Awards. Donald Taylor has been with TASH since 2014, where he is the Manager of Membership & Communications, responsible for membership and chapters, data systems and communication, and collaborates closely with other staff to make sure TASH systems support their work. Donald comes from a background of data systems, operations and business analysis, going back to the 1990s. Donald came to the world of disability while pursuing a degree in history. The history profession is deeply interested in the eugenics movement of the early twentieth century and fellow students studying biomedical systems of oppression inspired in him the desire to make a contribution to this aspect of social justice. Transcript Announcer: You’re listening to the AoD Disability Employment Technical Assistance Center podcast, where we learn from people who are working to improve competitive integrated employment and economic outcomes for people with disabilities. This is part one of our two-part interview with Sue Babin, the Special Projects Director with the Rhode Island Developmental Disabilities Council, where she founded and runs the program, Self Employment: the Spirit of Individual Enterprise. We go deep into the nuts-and-bolts of how to run a self-employment program and the value of self-employment for people with disabilities. [music plays] Donald Taylor: Sue Babin, welcome to the DETAC Podcast. Please introduce yourself for listeners. Sue Babin: Okay. Hello everyone. My name is Sue Babin. I work for the Rhode Island Developmental Disabilities Council, and I’m also the state Director for Rhode Island’s Self-Employment Project, which is called Self-Employment: the Spirit of Individual Enterprise. I’ve been here at the Council for about 12 years. And prior to that I worked for the State Office of Developmental Disabilities. I was the waiver manager and also oversaw the Office of Quality Assurance and Special Projects, and under special projects was employment. Donald Taylor: And tell us about your program, Self-Employment: The Spirit of Individual Enterprise, and your other work on self-employment. Sue Babin: Okay. So back in around 2017, I had a couple of different families approach me at the DD Council because their family members were having a really difficult time finding employment. They were going on interviews, filling out applications and not getting callbacks. And it was getting really frustrating for the folks with disabilities to not be able to obtain a job when they really wanted employment. And so one of the family members Claudia Lowe, who at the time happened to also be the director of the Rhode Island Down Syndrome Society, her daughter had a real big interest in music and she had over a thousand songs in her computer and wanted to be a DJ. And so her mom said, well, how can we help her to start this business up? She’s gonna need some startup money and she’s gonna need to know some things about business. So they had approached the state Division of Developmental Disabilities as well as Voc Rehab and weren’t getting a positive response back from those guys. And so they came to the Council and said, how can you help us? And so what happened was we started to take some business classes together. ‘Cause When I, when I started to talk to Voc Rehab, I said, well, what’s the problem? Why can’t you guys give her some startup money to get this business off the ground? And their response was, well, how do we know that she’s really serious about starting a business? Right? And she hasn’t taken any business classes. She doesn’t have a business plan. You know, maybe this might just be a hobby. How are we gonna know it’s gonna be employment? And so I said, okay, well, we’ll, I’ll take the classes with her. So we started to take some classes that were offered by the Small Business Administration here in Rhode Island that were in-person. But she was finding the material really hard. It was complex information. Sometimes the PowerPoints didn’t have any graphics on it. The instructor wasn’t really willing to kind of slow down a bit and explain different things. And lots of times she wasn’t even raising her hand and asking questions. So we did that for a couple of different classes. And what happened next was I ended up approaching one of the community agencies here in Rhode Island that does small business classes. And I said to them, can I take your curriculum and modify it to make it more understandable to people with disabilities and potentially put some graphics in there, or pictures or things like that and you can approve the curriculum, and how about if I hire you guys to actually teach the classes? And they were like, yeah, we’ll give that a try. Okay. and so that’s what we did. We, when we started with like, basically three different classes and it was the curriculum that came from the Center for Women and Enterprise, which is a small business agency here in Rhode Island. And once we had those three classes off the ground, we started a really small pilot project with five people. And we, we ran through the three classes with them. We got some feedback from them. We also worked on things like developing a one page business plan. And then we went back and approached VR and basically said, well, they’ve taken a couple of classes here, you know they need some support to start their business, to be able to buy some of the equipment and supplies that they need. At that point, they were more receptive because now they had taken three classes. They had a small business plan. They definitely had the passion for what the business was. And that’s basically how we got off the ground. And the word about that started to spread statewide that the Rhode Island DD Council was helping individuals to start up their business. So Katie Lowe became a DJ. She named her business, Katie’s DJ Business, and got some business cards, started to get some gigs lined up for herself playing music at different events. We helped her to get a grantor support from Voc Rehab for a couple of thousand dollars to buy the speakers and sound system and stands and all of the stuff that she needed to kind of get that. She had the computer, which she was funded by her DD plan. She used self-directed supports, and that’s how she got started. And then what ended up happening after that was we found out that there was some funds available through the Department of Labor and Training for job development and job training. And so we applied and ended up getting a grant. And that’s what turned us into a statewide project at that point. And that was in 2018. Donald Taylor: Tell us about the ongoing program now that it’s established. Sue Babin: Okay. So in 2018, we wrote and received approval for a grant from the Department of Labor and Training, which is the state agency here in Rhode Island. And every state has one that is responsible for workforce development, for any kind of an agency that’s interested in helping people obtain jobs within the state. I mean, typically what people do across the country that start up self-employment programs is they go to the DD agency. Well, we didn’t do that. We went to the Department of Labor and Training, which is, as I said, the primary entity for any sort of job development and training programs that a state would offer to any individual that’s seeking employment. And we got it. So our first grant was for $150,000 to run three rounds of the training that we had put together. At that point, we had expanded out from three classes to six classes. So the classes started with, what does it mean to be an entrepreneur? What is that? What skills and abilities will I need to have? And who will I need to look for to assist me with my business? The second class is, what are the steps that are involved in starting a business? What do I need to do? What will my business structure need to be? What kinds of things will I need to have in place? The third class was, how do I write an elevator pitch? How can I talk to people about my business so that they understand what it’s all about and are interested in buying some supports or services from me? The fourth class was on social media. How can I use social media to really promote my business so that people find out about me? The fifth class was on accounting and keeping track of my sales and inventory and expenses. And then the last class was taking all of that information and putting it into writing a good business plan that has all of that information that I just said, as well as my future financial projections of income for the year and the next couple of years. So we started with that this is prior to COVID now, so we were running some classes in person, and we found that people that had family involvement in helping them to run their business was the number one key to success. So if I were gonna start a business – and I did about 20 years ago, I ran a little restaurant. And at the time, I didn’t know all of the aspects of running the business. So I had my mother workin’ there, I had my sister workin’ there, I had a couple of my cousins workin’ there that knew some things about restaurant management. And I brought in people that had skills that I didn’t have or had a background that I didn’t have to help me to run the business. And it’s the same thing for people with disabilities. No one individual can run a business on their own, but if they have support from a business team of people that can help them in the areas that they’re weak or they don’t have experience in, then they’re gonna be successful. If they have family involvement, that’s gonna be really important to helping the person to really be a successful business owner. If they don’t have family involvement, the next best thing is when you have agencies that are investing business development expertise in the staff within their own organization. And so, in other words, if an agency starts to see that there’s a small, that there’s individuals with disabilities that wanna run a business, and now they’ve got a handful of people that are small business owners, they need to provide that support to those individual business owners. And many people in human service would not have a business development background. So that means the staff that work in a community agency, they need to learn these business development skills. They need to know what’s a good business plan. They need to know a little bit about marketing or where you can get the resources for that stuff. So another key to success is when an agency sees this and then basically designates an individual to be responsible for business development and to enhance their skills in that area. So that’s the second thing. The third thing that really helps a person to be successful with their business – and I know that many states have this support, which is called self-directed support, where an individual with a disability can purchase the services that they need themselves and take total control over who they hire, how much they’re gonna pay that person, write up their job description, train them, and then monitor what it is that they do. So when an individual has self-directed supports, now they can hire an individual to assist them with their business. Maybe it’s somebody that has the same kind of interest that they do. Maybe it’s an individual that has a lot of networking skills and knows a bunch of storefronts or individuals in the community where they can help that person then go and sell whatever it is that they have to offer in storefronts across the state. So those are the three kind of key things for an individual. So we help people to obtain those things. And the other area that we found that people needed support in is selling platforms. Okay, I’ve got a really good idea now for my business. I’ve got this support from my family or an agency or self-directed, but now I don’t know where am I gonna sell my stuff? And so another thing that we started to build into our program was participating in outside vendor events. And Don, these outside vendor events have happened all across the country and are more prominent now because of COVID. You know, when states had to deal with the fact that storefronts were closing down because people couldn’t go into these community locations for fear of getting COVID, a lot of the small businesses had to pivot and figure out what am I gonna do? And so many states started to support outside, take it outside was what we called it here in Rhode Island, and taking businesses and opening up buying outside heaters and setting up small tables so that people could participate in stuff that was inside the store, but now it’s outside the store under a tent, but in the fresh air. And so we found that outside vendor events started to grow here, and now they’re even more prominent than what they were five years ago. We connect with a couple of people that are the mastermind behind those outside vendor events, and we pay the fee for people with disabilities to participate in them. So in Rhode Island, there’s, there’s about 40 to 60 outside vendor events that go between April and November. And so we pay those outside fees. Typically they’re about 50 bucks for a person to come. We also have the tents and the table. They have 10 by 10 tents and outside tables. So we pay all of that stuff so that the individual can go to that outside vendor marketplace and then be able to sell what it is that they had to offer. So that was another area that we saw, okay, these classes are great. The person’s got the support, now they need, they need those outside marketplaces. And then the next thing that we found out after that was that people need a lot of work and support for marketing. What you do today for marketing is different than what you do in the winter months. And what we, so we hired an outside communications agency to not only help us with individual marketing, with the people that were in our project, but also to publicize what we were doing statewide so that we got more visibility as a statewide project. And also the general public could see, wow, here’s some really cool businesses that are being operated by people with disabilities. This is awesome. So marketing and being able to provide each person with individual support so that they could sit down and talk to a marketing professional to listen to what they had to offer in terms of a product or a service, and then figure out, hmm, what’s gonna be the best way to help Don or Sue market their business. So those are some things that I think we’re doing here in Rhode Island that make our project really different. We have an outside marketing agency. You know, we, we utilize instructors from the small business administration to teach the classes. People can have one-to-one time with those business instructors. And the other thing that we do here that is really key is provide people with mini-grants. So people can get a mini-grant of anywhere from a real low of, of $250 all the way up to $2,500 to be able to buy the things that they need for startup. And that could be supplies, it could be equipment, it could be a printer, it could be the membership fee, a join a chamber of commerce. So all of those things are absolutely instrumental for people to be able to start up a business. Donald Taylor: Tell me about how your program is funded. Sue Babin: How we’re funded. Right now 90% of our funds continues to come from the Department of Labor and Training. So I mentioned that we have we actually have eight classes. So we added two more classes. Another one was on social media. And the other class that we added in to make it eight is on figuring out who your target market is. So it’s eight classes. So we run three rounds of the eight classes three times a year. We’re funded by the department of LA of Labor and training approximately $200,000 a year. We get a little bit of money from a small foundation here in Rhode Island called the Fogarty Foundation to assist us with some additional mini grants for people. That’s about $5,000. And then the Rhode Island Developmental Disabilities Council kicks in part of my salary for being the project director for the project. Donald Taylor: Tell us about the partners you work with. Sue Babin: Okay. so we have a lot of, of really different partners that are involved with us. We started with the Small Business Administration. So we started with agencies that typically do work in entrepreneurial training, the Small Business Administration, the Small Business Development Center, the Center for Women and Enterprise. Those are our three major agencies here in Rhode Island that would be involved in any kind of entrepreneurial training. Then we went to our community provider group. And in Rhode Island we have an organization called the Community Provider Organization that oversees C P N R I. They oversee the, probably about 80% of our community agencies. We started to talk with them about our project and have them hear some of the success stories of individuals because we needed to get referrals of people for the project. Word of mouth was one way, but getting referrals from community agencies was another way. And what I neglected to say early on of how we got, how we got started back in 2014, as many states know, Rhode Island was under became under a federal class action suit that resulted in a settlement case, but with stipulations for goals of employment for every year. And so the heat was really on our state and with our community providers to assist people to understand about employment options, customized employment. And five years ago, self-employment wasn’t really even on the table as an option for people today, five years later, because of the visibility of our project it’s a viable option that’s presented to all people that express an interest in self-employment. So we get many of our referrals from our community agencies, which I consider to be big partners. The other partners in our project are people that really work with us, the communications agency that I mentioned, communication Works. We also work with local newspapers to help promote individual success stories of people. That’s really important. And one of our more recent partners is an agency called Skills for Rhode Island’s Future. They were an organization that started within the last 10 years to essentially help employers to figure out what their workforce needs were and to assist them in matching potential job openings with viable candidates. In the past few years, they decided to expand, to assist people with disabilities to obtain employment. And we partnered with that organization as well, because they didn’t, they weren’t working with folks with disabilities. And so they kind of saw us as a lead agency with respect to having expertise and being able to provide the individual attention that people needed for self-employment skills for Rhode Island’s future. Also recently received a multimillion dollar grant from the National Small Business Administration, as well as our Department of Commerce here in Rhode Island to set up a small business hub for small business owners to be able to provide individual entrepreneurs with technical expertise in one of 12 different areas, legal, marketing communications, web development it all social media, all different kinds of areas. And they reached out to us and asked us if we would be a partner agency with them, so that if individuals came in and said, you know, expressed that they had a disability, then they could connect those individuals with our agency that has a lot more experience than others in working with folks with disabilities. So what that means is that individuals who have a small business are eligible for up to $10,000 in technical assistance support that they never had before. And they can use it for those. Marketing is the key thing, Don, you know, if you have a really good business idea but people don’t even know about it, then you’re not gonna make any money. And so you really need to know, how am I gonna market this and really think about things in terms of maybe key times of the year and adapting your product to go with themes like 4th of July is coming up, right? We just had Mother’s Day and Father’s Day and Easter. And so you may wanna figure out how you fit in or what you can do with your product or your service to kind of go along with theme areas. And so what skills is going to be able to help us with is providing individuals with that more in depth technical support that they may need, might be on business structure, should I be an LLC or a sole proprietorship so we can help them with that, that legal expertise so they can come to us. We will, we will obtain the individuals that they need for that specialized business support, and they can get up to $10,000 each for that support that they need. So that’s like a really key partner. And the fact that the fact that, that we, that we’re using money from the Department of Labor and training from the workforce board here in Rhode Island, that they’re a key partner. They established probably about 10 years ago that they want, they set up a fund for underserved populations, and they started to fund a few very small projects that involved individuals with disabilities. And then they found out about us and put the word out to someone that had connected with us that maybe we should apply for a grant to be able to assist people to be entrepreneurs. And so we had, so they’re obviously a key player, the state division of developmental disabilities because of the class action suit and because of their connection with our licensed community agencies are also key players with respect to this as well, because if we don’t get referrals, then we’re not gonna be able to provide the classes to people. So those are the major players that we have within our project. Donald Taylor: Would you share a few stories of people with disabilities who became successful business owners or achieved self-employment through the program? Sue Babin: Okay, sure. So, so one of the folks that I had mentioned early on, Katie, with her DJ business she was doing really well as a DJ and doing, doing five or six gigs a month and was absolutely loving it. And then COVID hit and then, you know, like I said before, when the stores started to close, she, those public events where people were hiring DJs were eliminated, and she had to stop and think, wow, okay, what am I gonna do now? She had a creative side to her and her mom is also pretty creative. And so they came up with the idea of a greeting card, creating 3D greeting cards, not just a flat greeting card, but to actually decorate a card and put different things on items on the card to be able to make it different than just a hallmark or a flat one dimensional card. So they started to go into that business, and they also came up with the idea of buttons on buttons that you wear, that people buy buttons that say everything you could have your kids’ picture on there or could say, you know, 4th of July or whatever, I voted on those kinds of things. So they shifted during COVID to come up with some other business ideas that would help Katie to be able to continue to generate an income. And that has worked out pretty well. So she’s named that business Cheetah Greetings and more. And it’s, it’s doing quite well. Her cards are really amazing. I love the three D notion to them. And one of the other things that she did to kind of give herself a niche is that she reached out to different veterinary clinics who will often send sympathy cards to the pet owners when their pet has passed away. And so Katie came up with a line of sympathy cards for pet owners who have lost their pet, and it’s got like the rainbow on the front and a dog or a cat on there, and it’s really, really cool. Again, three dimensional card. And she also came up with an adoption card to be able to sell those items to agencies here in Rhode Island that deal with adoption. So I think that niche was really a smart idea for Katie. And it makes her stand out as having something unique. And so she’s got a unique selling proposition, as they say in the business world to be able to, to sell her cards and make herself as something different and something that the public wants. You know, the, and the other really interesting story here in Rhode Island is Michael Coyne. Mike owns two businesses now. One is called Red, white and Brew, it’s a cafe, and the other one is the budding Violet. Prior to having those businesses, Michael was attending a day program and not really doing much. That was in the line of being very productive. If his staff didn’t show up, then Mike would just sit at a table, maybe he would color, maybe he would just put his head down, maybe he’d even lay on the floor. And, and I even have a picture of Michael laying sleeping on the floor because his staff didn’t show up. When his staff did show up, he was going to a work in a restaurant here in Rhode Island. It’s not like the McDonald’s chain, it’s a, it’s a different type of restaurant. And he worked there volunteering for almost three years when he was between 18 and 21. And then he applied for a job there, and they wouldn’t pay him, they wouldn’t give him the a paying position, which was really frustrating for Michael. His brother had a job, he wanted a job. He said, what the heck is this? I volunteer here for three years and you keep me as a volunteer, but yet you won’t pay me. And he went back to just sitting around at a table, not doing anything. His mom found out about our project and had approached me and said, well, what is this about? And I said, well, you know, if somebody has a hobby or a particular skill, it’s possible we can kind of work with that and turn it into something that generates some income. You know, what does Michael like to do? She said, well, he likes to drink coffee, that’s for sure. Okay, well, how about a coffee business? Maybe we could set him up with a mobile cart and he would be stationed in different areas in, in a business that, that didn’t have coffee there and they could offer, he could offer the coffee to customers. And so she got Mike involved with our classes and I got him connected with one of our business instructors, Brian La Fauci, who was the former New England director of the Veterans Business Outreach Center. So he had a lot of experience as both an entrepreneur himself, but also as the New England Veterans Business Outreach Director. So working with a lot of veterans across the States and New England. So Brian had a lot of business expertise, and he said, instead of the coffee cart, what about a shop? What about a coffee shop? And Brian really helped them to think about what would be the right business structure? What are all of the steps and things that Michael would need to take in order to open up that particular business? And they opened it up in November of 2019, right before COVID, oh no, here we go again, another COVID story. But yet, people were coming in and what they did was they started to deliver coffee, and they were delivering coffee to the local police departments, to the local hospitals, and the outside pop-up stations that formed to give out the mass and things like that, and the testing sites. So they also were creative during COVID by getting their name out there. And then people started to come to their shop. Michael got a lot of national attention because of his entrepreneurial skills and the work that he was doing. He also had his family work in there, and this is a business that both he and his, his mom run. They grew so well that they decided in December of, of 22 to close that shop and reopen in another area of the state that has triple the space of what they had up in Smithfield, Rhode Island. They’re about to open in another five weeks. And they are really excited about that. It’s really visible. It’s in the hub area of our state, a city called Warwick. It’s right near the airport, a really high traffic area. And they’re definitely gonna be really successful, successful. The other business that Mike opened with the coffee shop was they have a little retail shop that’s connected to the coffee shop. And so when you come in, you can buy gifts. So Katie’s got her cards there, and so do other people that have gone through project photography, candles, soaps, jewelry potholders knitted hats and scarfs, things like that. As well as items from entrepreneurs without disabilities. And the name of that shop, it’s called the Bun Violet. So it’s, it’s two businesses in one. And that’s really, you know, awesome for Michael to be able to be able to, to be visible in the community. Another great example of, of somebody is a gal by the name of Renee Metro, and the name of her business is Fulcrum Stained Glass. She just had on Saturday night a grand opening for her first stained glass studio also in Warwick, Rhode Island. Renee had been doing stained glass pieces for well over 10, 15 years, but not doing really well with it. She always had a dream of someday opening her own business, but she has a disability and she grew up in an environment that wasn’t too pleasant. She had a difficult upbringing and people weren’t around her, were not very supportive of her ideas. And so she had some depression and some other kinds of things going on in her life that got in the way of her really believing that she could accomplish this for herself. She came across some information about our project two years ago. She joined our classes. And what Renee says is not only did she learn the business skills, but because of the support that she received from the staff, our staff that work in the project, and the individual technical assistance that she received, she said she found a family that she never had before and the support to believe in herself that she could do this. She had approached VR five years ago for a grant to be able to get some startup money for this business, and they said no, she had not taken any business classes at that time. Renee approached vr in the last six months, and she got her yes, and they gave her almost $10,000 to be able to open up this storefront. So she went from somebody that really didn’t believe in herself to actually learning the right business development skills, coming into contact with people that can continue to provide her with the ongoing support that she needed. She got the mini-grant from us. She got the grant from voc rehab. And another piece of our project that I hadn’t mentioned so far is every Thursday afternoon we run an entrepreneur class. It’s an open class for anybody that’s been through our project. It’s from three to four o’clock, and we mostly talk about marketing. Occasionally we’ll have a speaker come in and talk about something that’s really important that people need to know. And Renee goes to every one of those classes on Thursday faithfully. So she keeps in touch with our folks, and we have found that Renee is, is a whiz at Instagram. So we hired Renee to teach other people in the class how to use Instagram to market their business. And so here she is now making some income from us. The other thing that she’s done with her business she opened the business about three months ago, but didn’t have her grand opening until, as I said this week, because she wanted to work some kinks out. She also always wanted to teach. She ran her first class about a month ago and was sold out with participants for that first class which I’m so proud of her, and she’s so proud of herself about that, that there’s no doubt in my mind she’s going to be a successful business owner. We also were able to connect her with an a, one of our news local newspaper vendors called the Warwick Post, who also did a feature article on Renee last week and about her grand opening, which when people have some sort of story in local media, that’s another marketing tool to be able to promote your business and for the people in the community to find out, Hey, I didn’t know that that was down the street. And here’s all of the things that that are available within the store. When most people think about stained glass, they think about sun catches, but Renee does so much more than sun ca sun catches. She’s actually doing windows. She can do a drawing of your dog and turn that into a stained glass item that’s personalized and customized. She’s doing jewelry boxes, she’s making plant holders that are out of stained glass, absolutely phenomenal pieces. She really has an eye for artwork. So she’s a creative artist as well as just so meticulous about the colors that she uses, or the stained glass, I should say, that she buys for her items so that when the sun or the light catches them, the most amazing colors come through. So I’m so excited about Renee and her business. And also the other thing that we were able to do with Renee is she was on the National Disability Institute’s webinar last week. It was a national webinar. And so Renee got her first national attention as a small business owner from Rhode Island by being on that podcast that n d i in collaboration with Griffin Hammis did for nationally. And, and it’s on their website now for anybody to be able to see. So hopefully that will result in some increased business for Renee. And I think the other thing that I wanna say about businesses that we’ve seen is just the incredible increase in people’s self-awareness of themselves and how their self-esteem has increased because they are a business owner. When people have jobs in the community, that’s really great, and people love to be able to go to the bank to cash their checks, but many times they don’t necessarily have friends in that job, and they don’t necessarily stand out. When you are a business owner, you are the focal point of the business. You got people coming to you talking to you directly about what it is that you have to offer. And so business owners have these business cards that we’ve helped to create for them, and they’re presenting those cards to potential customers that are out there. They’re talking more. So their communication skills have definitely increased because now they have to talk to customers about their business. They’re getting out there in the, those vendor marketplaces that I mentioned earlier and interacting with people from the general community that maybe they didn’t have those opportunities when they were in jobs. And so people are seeing them in a different way. And it’s really, really incredible to see the changes in people that have happened as a result of, of having their own businesses. People have said this is like the best, you know, persons example of person centered planning because people are doing something that’s their passion. And as everybody knows, when you do a job that you really love, you’re gonna be more productive. When you do a job that you really don’t love, you kind of do just get by, right? And so what we see from family members or they say, oh my God, my family member is so much happier. They’re so proud of themselves. They’re talking more, they’re interacting with other people. They’re a business owner and they’re proud of of that fact. Announcer: You’ve been listening to the AoD Disability Employment Technical Assistance Center podcast. This is part one of our two-part interview with Sue Babin, a Special Projects Director with the Rhode Island Developmental Disabilities Council, where she runs the program, Self Employment: the Spirit of Individual Enterprise. You can learn more about the program at riddc.org/self-employment-project (https://riddc.org/self-employment-project/). The AoD Disability Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group (https://www.lewin.com/) and TASH (https://tash.org/), created by a grant from the Administration for Community Living (https://acl.gov/) to provide evidence based training and technical assistance to Administration on Disabilities (https://acl.gov/about-acl/administration-disabilities) grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AoDDisabilityEmploymentTACenter.com (https://aoddisabilityemploymenttacenter.com/) for news and alerts about upcoming webinars and podcasts. You can follow us on Facebook (https://www.facebook.com/AoDEmploymentTACntr) and Twitter (https://twitter.com/AoDEmployTACntr). Music for the DETAC Podcast is an original composition and performance by Sunny Cefaratti (https://themusicalautist.org/about-sunny/), the co-director and autistic self-advocacy mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org (https://themusicalautist.org/). We’ll have another episode on competitive integrated employment, notably part two of this two-part series, for you in the near future. [music plays] This discussion was originally recorded on June 26, 2023. This audio recording and transcript has been lightly edited for content and clarity.

7. 

   19 Apr 2023

   IMPROVing Employment Outcomes with IMPROV

   Sierra Royster, the Director of Innovation with the Association of Programs for Rural Independent Living (APRIL) (https://www.april-rural.org/), talks with Michael Beers, the Youth Transition Coordinator at Summit Independent Living (https://www.summitilc.org/) in Missoula, Montana. Michael is also a standup comedian and runs improv workshops. They discuss a variety of issues in employment, including creativity in employment support, the Centers for Independent Living in rural areas, youth transition to employment and theater as a means of engagement. Presenters Michael Beershas been in an open relationship with Advocacy since 2001 when he was a delegate at thee Montana Youth Leadership Forum (MYLF) (http://montanaylf.org/) in 2001. He then began a casual courtship with Summit Independent Living (https://www.summitilc.org/) as a Peer Advocate in 2003, a match that would eventually develop into Michael being labeled as Summit’s Youth Transitions Coordinator in 2008. A position he happily holds to this day and will hopefully have tomorrow. Both these relationships have opened doors for Michael to have a plethora (many) other opportunities to model model model as an advocate. He was a board member with Association of Programs for Rural Independent Living (APRIL) (https://www.april-rural.org/) for the better part of his youth and was a School Board member for Missoula County Public Schools from 2013-2019. Michael is also very proud to brag that he has been able to return as staff to MYLF ever summer since 2002 and is a staff member of the program throughout the year. Finally Michael insists on telling jokes from time to time, another habit he picked up in 2001. He has traveled this country and a bit of Canada telling stories to audiences ranging in size from 1-1,000ish people. He also works at BASE community center (https://www.summitilc.org/services/base/) (a program of Summit IL) with Missoula’s HomeGrown Comedy (https://www.theroxytheater.org/show/missoulas-homegrown-comedy/) to teach communication through improv classes to students of all ages and abilities. Sierra Royster works at the Association of Programs for Rural Independent Living (APRIL) (https://www.april-rural.org/) as the Director of Innovation. She works with other national disability organizations to develop training material and new opportunities for Centers for Independent Living and Statewide Independent Living Councils, which make up the majority of their membership. Coming from a Center for Independent Living herself, she understands the importance of creating opportunities for CILs to create connections and peer support to make a large effect on their local communities. She uses this experience to identify gaps and needs within independent living and create programs or services to address them. She strives through all aspects of her position to ensure that rural areas are included in disability services, rights, and programs to create a larger outcome in the community. Transcript Announcer: You’re listening to the AoD Disability Employment Technical Assistance Center podcast, were we learn from people who are working to improve competitive integrated employment and economic outcomes for people with disabilities. For today’s episode, Sierra Royster, the Director of Innovation with APRIL, or the Association of Programs for Rural Independent Living, talks with Michael Beers, the Youth Transition Coordinator at Summit Independent Living in Missoula, Montana. Michael is also a standup comedian and runs improv workshops. [music plays] Sierra Royster: I am Sierra Royster. I’m from APRIL, which is the Associations of Programs for Rural Independent Living. We are a national membership organization for Centers for Independent Living. If you’re not familiar with us, [inaudible]. Mike Beers today is very familiar with us. but we are excited to kind of have you here today partnering with the DETAC and getting some of the conversation out around employment and how to make it cool and hip, which is the opposite of those words. Michael Beers: I remember us being in a youth training telling people 10 years ago, as soon as you start saying “hip”, you need to start having your own checked and you need to stop worrying about being cool. So yeah, congratulations. Sierra Royster: I’ve made it. I’ve made it. Michael Beers: We are officially the, those hip people. Sierra Royster: We are. Michael Beers: Fantastic. Well, I am Michael Beers. In addition to being a standup comic and speaker, I’ve worked in independent living for God over 20 years. Primarily for Summit Independent Living Center in Montana, Missoula, Montana. Very proud. And we’ll talk more about a program specifically through Summit that I’ve helped develop along with some national partners and local people called BASE. And then also I’ve worked alongside the Center and another center who sponsors our youth leadership forum in the state of Montana. So the Montana Youth Leadership Forum. I’m an alumni and also a proud employee of that program as well. And was on the APRIL board for a number of years. So very familiar with those amazing programs. And it’s strive for community and, and, and training and, and all things rural, so excited to be here. Sierra Royster: Awesome. Yeah, you were, I think, our first youth board seat on the APRIL Board. Michael Beers: I was, and quick APRIL plug, I, I will always have a special place because it was the, it was the early 2000s and the, the, all the rage was to have national organizations create kids’ tables of youth. So it’d all be like a separate board with only young people that advise the regular board and say, APRIL’s I’ll always give APRIL credit. They said, you know what? That seems like a lot of work [laugh], why don’t we just put a, a youth on our board, [laugh] with everyone else. And I kind of started a trend. We started seeing that more and more. So shout out to APRIL for that. And I was yeah, very honored to be that, that first young person. Sierra Royster: Well, with that, it’s, you know, we, they put you on the board, but they made you work. Michael Beers: Yes, yes they did. They did [laugh] and Yeah. Nice segue. [Laugh], I usually have a, a problem with Segues cuz the throttles on the right. Sierra Royster: Mm-hmm. Michael Beers: Um I have a, for those, it is an audio podcast. I have a very short right arm as well. It’s part of my disability. Yeah, let’s talk employment. Sierra Royster: Well, so today, like employment’s been a conversation forever. I feel like, you know, we, the goal is to get people employed, people with disabilities at a higher rate of employment. And I think every disability organization and service agency has gone about different ways to bring new employment opportunities, whether that is what the person actually wants to do and could just check off a box, or it is actually helping somebody pursue a career that they actually want to be in. But with your comedy background and natural skill I think that you’ve done a really innovative way of kind of approaching employment and talking about employment beyond just how do we get somebody on a job. There’s so many things before we get there, but I think you’ve done a really nice job of opening up the conversation for so long. So I’m excited to hear what you’re gonna, what are gonna say about all that. [Laugh] Michael Beers: No, thank you Sierra. I know and Sierra and I go way back. We’ve, we’ve been at working collaboratively in different areas around, like Sierra said these same questions for a lot of years. And the, the thing is, they were old questions when we got involved. It seems since I got introduced to the independent living and by extension, disability rights movement and those philosophies housing, transportation, employment, you know, there’s the, the, the, the primary four issues that seem to never change as priorities. And, you know, I haven’t checked it lately, but it feels like the unemployment rate for people with disabilities has stayed at that, you know, at that rate since I started. And we haven’t seen much movement despite a lot of creative different strategies for approaching this. So in getting into the schools I think, like I said, the Youth Leadership Forum was both my, my introduction to this language of employment and opportunity. And my first opportunity to be employed through centers. And once, once we got into schools, I know a lot of us you know, began to recognize that yes, our, our our, what we were being asked to do was connect young people with employment and housing and those transition goals. But one of the, the things that became very apparent is that the, the young people that we’re seeing and working with in schools and the issues that they’re dealing with going back to the 2000s and today are, are much different than the, the access issues that began our movements. And it was amazing to be in front of those audience and being able to respond to that. But, you know, the question became how do we respond when, when the issue for employment isn’t a a lack of access to a ramp or an elevator or braille, but it’s, you know dealing with mental health, learning disabilities, you know, these types of things. So I know I’ve I’ve seen a lot of those trends go in and out. I think a lot of it too that we that I recognize and I remember talking about with people working with in schools at the time, Sierra and APRIL, a lot of people at APRIL included was just that once we got into the schools, you know, despite the, the money or the grant money or our charge being employment and housing, that’s not what the young people were most concerned about. Their concerns really boiled down to like loneliness and a lack of confidence. So it, and sometimes a home life that that was, you know, so it was less, less about a disability and more about other issues at home. So, you know so how do you deal with those things and get to get to those, those employment goals? Cuz it seemed like a, a barrier cuz if you’re and it really forced us, yeah, it forced us to look at different ways of addressing those issues. And we’ll talk about later. Improv is something that you know, I have naturally in my background and we really started to look at as something that could probably address those loneliness and confidence building skills. Sierra Royster: Yeah. And I think one of the things that we’ve always talked about, or I’ve heard lots of programs and coordinators and stuff talk about as well, is those, those soft skills, right? And those connections with one another. But you know, we focus a lot on youth when we start talking young adults when we talk about employment. But I think one of the things that me and you have talked around a lot before is the, the support that an individual means. So it’s more than just setting up a group of people to connect and, and play games together or to network with one another or have a, you know, an outing. But the community support that continues, I think, around trying to strive and achieve some of those goals and like having that support with you when you experience something and it doesn’t go well [laugh] and being able to build you back up [laugh]. Michael Beers: Yeah. Sierra Royster: Uh can you talk, will you talk a little bit about like that, that community piece, cuz I think you touched a little bit on BASE earlier, but many people don’t know that. Michael Beers: Yeah. Sierra Royster: Centers for Independent Living are community based organizations. They, their programs are focused on what their community needs or the gaps that are there. But you all took such a different approach to that. I think it’s the amount of community and support and rallying together um … Michael Beers: Yeah. Sierra Royster: … Really changed a lot of how outcomes looked. Michael Beers: Absolutely. And I think you know, BASE as a program was born out of a lot of conversations that began with like Youth Leadership Forums and like the APRIL pre-conference I think was a you know, every, before it ever is a breakout session. It’s the, the conversation you have next to the coffee pot and, you know, in the airport on the way to the conference. So BASE is kind of a, a response to some of those. But it really challenged, you know, looking at you know, that old adage, you know, “You do the best you can until you know better. And then once you know better, you try to do better.” And that’s a a Maya Angelou quote that I, I’m sure I didn’t get exact, but but when it comes to community, I think community living and community first choice, and this word community is something that we, we talk about a lot in [independent living]. And I always associate it with the, the living independently part. So I’m living in the environment that I choose, whether it’s an apartment or a house with the, the services I need. But the more, you know, we, we talked around, you know, the idea of community and getting access to it. Uh you know, an an apartment is a physical location, a community is people. And that’s not something that, at least at this time, I saw a lot of us intentionally going after is: how do we connect people with people and not just, you know, you live in an apartment in the community independently. I think it was for a lot of times it was presented intentionally or not as a linear process. So yes, graduate high school, let’s focus on getting you a job, then let’s focus on getting you an apartment. And once you get all those things, let’s check all these boxes, then, you know, friends will happen and you can then meet people. And you know, we know that doesn’t, you know, that’s, that meaning people is part of the motivation for those other things, right? So the reason I get a job, the reason I want money is because I have places to go and people to go out and see. If I don’t have those things, it takes away the primary motivation for wanting a job or, you know, to practice my hygiene or look fresh or do those soft skills. So setting up community, I think YLFs do a great — Youth Leadership Forums — do a great job. APRIL’s pre-conference, other conferences around the country, transition conferences. But they’re, they’re isolated. So they’re one week or one weekend a month and only a certain number of people can go. So accessing where do you access when you need that feeling of community? So that’s where BASE you know, we, we started coming around the idea of how do we set up through a center, a program that is you know, and we, we pick the name BASE because it’s a very relatable, everybody’s played tag or some version of it. And the first thing that you do is establish base, right? So base is either the monkey bars or the couch. And as soon as you put your hand there, no matter how weird the game is, no matter how stressed out you are by it, if your hand is on that spot, universally in the understanding is: nobody can mess with you. I can take a break, I can be myself, I can make a plan but I can’t stay here. I can come back here whenever I need it, but I always have to take what I got here and go play the game again. So the analogy and the, you know, kind of the cornerstone became: if life is the game that we’re all playing wouldn’t it be nice as a young adult or somebody of any age if you knew where to run and put your hand and say, no, not right now. Right now I’m gonna surround myself by the things and the people that I’ve chosen to build that confidence. And and that’s really, you know what, what’s sprang into programs like the improv, which we’ll talk about, but the other, the other part of it, the, the community piece that Sierra brought up. And this is this is, this isn’t different. And, but I, I like this podcast cuz it, it has these conversations and it pushes the boundaries of what we’ve always done. Because honestly we’re dealing with problems we’ve never dealt with before. So to think that we’re gonna tackle ’em the way we did others, you know, is, is, is a practice in, you know not getting things done. We opened up these program, this program specifically and the, the, the activities within it open to everybody. So we are at BASE a separate location from the Center. We are a program of it. But all activities that happen in that location are all-abilities all-ages. So the idea of setting up community is also about not isolating yourself. So sometimes we get, I, and I, I can say this for myself personally, you can go from a place where you’re under-identifying as a person with disability in that, “No, I don’t have a disability and I don’t want to be part of, you know, any of that stuff,” to a place where you’ve over-identified and your job is disability, all your friends are related to disability and you don’t have anything outside of that because the center or that disability program is the place where you feel safe. So we also wanted to, to challenge that. Let’s build community based on interest and not necessarily label. So that’s where, where programs like improv seem like a natural fit. Sierra Royster: Well, and I think you’ve also talked about what you told me is getting people engaged and exposing them to different things, like and how when we talk about community, I think, you know, you said it best of like bringing all those people together, you know, cross-disability or, you know, no disability or not yet defined yet [laugh] or whatever that looks like. That group of individuals just coming together because they have a, a similar interest. And if they don’t have the opportunity to find those interests, I think when we start talking about employment, your interests are gonna be limited on what you’ve been exposed to. You, you talked about you, there was a, I think a presentation that you did on exposure and expanding horizons kind of, or opportunities. Will you talk about that? Your I like that part. Michael Beers: Yeah, absolutely. I think, you know, and it’s again like a conversation we’ve been circling around, but a lot I say we, I mean a lot of us doing this, this work for a lot of years. It’s about the language. So what do you, what language do you have to describe what you want? So you know, I’ve been in those rooms with you know, trying to brainstorm, okay, we’re not getting the job shadows that we want. We’re not getting the numbers that we want through this program or another idea. Uand, you know,frustrating and even kind of like, Hey, [laugh], how many people do you talk to want to be a YouTube star? And everybody’s like, oh yeah, everybody wants to be that. Or they want to be a video game designer. Uand again, it’s, it’s about looking at things and, and asking yourself why, like, why is, are these consistently the answers we’re getting? And if you look at the you know, we really looked at and through this conversation with parents talked about like, what is your student with a dis disabilities experiences been thus far in life versus the maybe a, a sibling that doesn’t have, doesn’t identify with disability. And the reason, you know, one of the reasons that we’re getting a lot of YouTube and, and video games as career goals is because that’s all they’ve had access to. So, you know, well, well, we think about a student who may have gone through like kindergarten to, to graduating high school. And, you know, hasn’t had, you know had to deal with identifying with disability. You know, there’s, there’s soccer practice, there’s language programs, there’s music programs, there’s travel abroad programs. There’s a hundred thousand things that you’ve tried and failed at before you ever get to the point in high school where you’re asked, what do you think you’d like to do? And for a lot of people, well, with disabilities, myself included, and a lot of students we work with, that’s not the case. Their experiences have been doctor’s appointments, therapy you know, just recovery from whatever, dealing with trauma you know, dealing with social, isol io isolation. So yeah, when they have free time, it’s video games on YouTube. So then when we ask what do you want to do? That’s the only language that they have and the only experience they have to pull from. So getting to improv and, and building community, a lot of times our, you know, what we’ve, what I think the conversation is going toward and some of the ideas that I see having an impact are less about placing a student in a specific job with a specific employer, but it’s about giving them access and exposure to different things. And to try and to fail at so they can figure out their language for what they want. And we’re not trying to impose what our language for employment is. And you know, that’s, yeah, that’s where we get into the tropes of food, filth or flowers or “Hey, why were you, you know, why, why did you fail out of college right away?” which so many of us do, even when that’s what we want, it’s because that, that might not have been, we, we, we’ve never been exposed to trying and failing before. So instead a higher you know, the risk and the cost benefit is, is higher now cuz it’s college and not soccer practice. But I still don’t have that experience. So yeah, I think experience is access to experience is also a way to build confidence and resilience that I don’t know that we offer enough through our program. Sierra Royster: Well, will you, I know you’ve talked about it a little bit when we talk about improv … Michael Beers: Mm-hmm. [Affirmative]. Sierra Royster: … I mean, maybe go over just a little bit what improv is in case we have some newbies just in general to comedy such as myself, I find absolutely that my joke book qualifies me, but [laugh] I’ve yet to take it on stage. So yeah. Michael Beers: You have at least one comic in the house. I know that. So … Sierra Royster: [Laugh]. Michael Beers: Um and yeah and I think [laugh] and, and Sierra and I have done improv together for years. It’s only in the last like, maybe five, we’ve called it improv … Sierra Royster: [Laugh]. Michael Beers: … Because, and that’s the beauty part about it: improv is a form of performance theater. A lot of people know, like the, “Whose Line Is It Anyway” with Drew Carey that’s been on for, for decades. And a lot of people will say, well, it’s, it’s comedy and, and and performing without a script. And that is true to an extent. But it’s not just actors getting on stage and saying whatever they want. Um … Sierra Royster: Actually, so. Michael Beers: … [laugh] it is but there are loose sets of rules. So you’re put into a scene with a one, another actor or depending on the scenario, you know, maybe up to five or seven. And you’re given a place typically from the audience can give suggestions. A place, how you know each other, and maybe the word “lamp”. And you have to stay within those guidelines of each game. But beyond staying in those guidelines, you can, you, you make up the dialogue, you don’t memorize anything and you you see where you go. So this you know, in thinking about this as a improv was my introduction to standup comedy. That’s how I got into it. As a way to build confidence on stage and also learn to deal with the things that were unexpected as a performer. But really looking at, you know what is asked of everybody every day: life is inherently improv. So, you know, we’re never, you know, it would be nice, I think for a lot of us, if we showed up to school every morning or to work and were handed a script that said, this is everything everybody’s gonna say to you, and guess what? We’ve written down every correct response. You just have to memorize it and say it when you’re cued. We don’t get that, like, the most we get is a, a syllabus or a meeting agenda. So our success or failure a lot is the is a result of our ability to fill in those spaces between the bullet points. And that essentially is what improv is. And so it allows you rather than sitting down and you know, reading how to speak in public from a book, which I never underst. It allows you to try and practice failing and finding something new from that failure and having a blast while you do it. And that will translate to confidence and the ability to keep that conversation going in other areas of your life. And that’s, that was the idea going into, to using improv as a base program in the first place, was using that stage to build that confidence to have it spread out into other areas of people’s lives. And yeah, it’s we’ve seen some success with it. Sierra Royster: What would you say because I think I have never been in the comedy world you’re like my closest touch to that, I guess when I’ve seen you perform and stuff, but those that are new to it or I, I think it’s a, I think we can all relate to it, right? We all have to speak off the cuff sometimes and [laugh], we mess it up or we don’t. And so when we’re teaching that though, that’s not, we often are teaching employment skills as concrete skills, right? Make sure you brush your teeth and [laugh] you smile and you’ve brushed your hair and you have professional looking clothes or attire on you respond to people in this manner when they say hello or these are your boundary circles and this is what a coworker’s relationship should be versus this. So how do people that are maybe interested in kind of opening up new ideas or new ways to have some of these conversations that are the in between those bullet points as you mentioned earlier. What are some suggestions you have for them of how they could kind of incorporate some of this? Or who could they partner with maybe? Michael Beers: They partner? Yeah. absolutely. I think you know, and part of the reason that we found so much success with improv in, in where we started, so I said I had a background in it and I know a lot of comedians, so it was a natural first stop. It was something I had confidence in. So we started there. If you’re looking at, you know building a programming or looking at how to address employment in a different way, I would say, you know, the go go with what you’re confident in. And it doesn’t necessarily have to be improv. It could be, it could be another art form, it could be, you know, poetry or it could be D&D. I think, you know, in looking at the BASE program at at Summit just turned eight years old, we’ve been in our space for eight years and we are looking at, you know, having conversations like this cuz if we’re seeing that impact in Missoula, Montana, you know, that these are issues and people that exist elsewhere. So exactly that, what advice for anybody? And I think the closest starting point would be creating space that people with disabilities and artists can share simultaneously. And that’s really what, you know, we, we did with improv, you know but it can be, you know, any number of things. So I wouldn’t look at you know, in, in your town if you want to specifically look at that, you know, look to see if there’s improv classes or an improv troupe performing. Colleges are a great place often like a, a theater program will have students that are looking for hours or, you know, teaching opportunities and reaching out to, to get something started. And we did this again cuz it was, it was what we had access to. But the more we went, you know, even the people that started showing up strictly for an improv class or to help volunteer who didn’t necessarily identify openly with disability, once you created a space that was creative and and open to all ages and abilities, you know, we have, you know, a lot of artists that Venn diagram of artists and people with disabilities has a lot of overlap because they’re similar languages. They’re art is all about trying to find a new way to describe old things. And disability is all about finding a new way to navigate life when it was built for people that do things in other ways. So there’s a natural relationship there, and a lot of times artists for the first time after being involved will, will feel comfortable identifying and saying, you know, I am a person with a disability. That’s not apparent, but, you know, I’ve never had a space where I felt safe. So yeah really. And learning the language. So knowing and listening to this podcast, understanding, I think it’s very interesting. I think a lot of us that have worked in these fields, much like [laugh], the analogy we used about YouTube stars and, and, and video game designers. We’ve all felt like we could be doing more and there’s a better way and a, a more impactful way to do these things, but we haven’t been exposed to a lot of it. So we need to find that language. We need to find the right language to address the needs that we’re seeing and don’t have that language yet. So I think, yeah, check out the BASE program, we’ll give some links at the end. You can check out some stuff virtually, check out what APRIL’s doing. I know Sierra, you do a great job of bringing youth coordinators from across the country together. And I think the, the few times I’ve been able to make that call, what I really get out of it is that language. So it might not be, you know, exactly, oh, I’m gonna replicate this program to the letter, but it’s, you know, knowing that yeah, there’s somebody in Spokane doing Dungeons and Dragons and there’s somebody in California who’s also doing improv, but they’re doing it this way, you know? So yeah, just exposing yourself to, to what’s there and being able to take it back and saying, “This exists”. You know, even if you know the people you are trying to, to get approval from, don’t, don’t want to go in this direction. You know, understanding that there is a language for it out there. Sierra Royster: I, I think you’re hitting on a lot. I think, and we talked about this with the base of like community and bringing different people around. That’s why I really wanted to highlight BASE as well, is because I think that shows those different artists as you spoke about, but also the different community members that have come around to bring their interest, their skillset their passions together to expose more people to those opportunities. And we’re talking Missoula, Montana, which is not urban but [laugh], what is that? I mean, some urban areas probably would have, you know maybe some more opportunities, but can you talk a little bit about what this looks like in a rural area and maybe some of those I wouldn’t even say barriers, but things to prepare for, or things to know how to navigate. Michael Beers: Right. I think, you know, and we’ve, we’ve seen a lot of success and the rural is it can often be more isolating. So, you know, urban areas you know, sometimes isolation isn’t as prevalent an issue because of things like access to transportation and variety of programming, you know the, just the, the sheer the, you know a rural student of any label shape or size inherently is going to have less experiences than somebody that lives in a New York or in LA just because we don’t have the diversity of people and we don’t have the infrastructure for different programming. So I think the so yeah, inherently there can be more problems. So this is a, a, a way to address some of that and the improv and building that confidence in communication styles. So something worth mentioning too we are open to all ages, all abilities but we are, you know our bones and our DNA are disability rates. So all of our improv games and everything we offer is, is put through the accessibility workshop. So everybody can do something. Nobody can do everything. So you may not be able to do every improv game. But we don’t, you know, we’re not going to set people up to, to not succeed or to be able to participate. So, you know, when we say communication, we’re not just talking verbally. You know, we’ve also retrofitted and talk a lot about how you have your entire body to use to communicate. And for some people that may be the only thing that they have. So those are all integrated as well, and we can, you know, if you’re interested, we’re always happy to workshop accessibility in games with people that are interested. But yeah, especially in a rural community, it’s employment and community is about all about who you know, and because everybody knows everybody, so it really is in your best interest, even sometimes more so than, you know, that college degree you can hand ’em, or that letter of reference is being able to sit down and bs with somebody and be like, oh yeah, I know so-and-so and so and so, yeah, they you know, they talked about the weather with me for 45 minutes this morning. Being able to talk about the weather in rural settings is, is a soft skill. You know, right now up in Montana, there’s all kinds of people go, oh, this snow is awful, but come fire season, we’re gonna, you know, be thankful we got this moisture. And being able to have those conversations is an employable skill. And I think improv is a really fun way to, to build that. Sierra Royster: Well I love what you, I always like chatting ladies, but I first of all just thank you for coming and having a conversation with me. Anytime that I can lock you down to chat with me for this long is fun. But the things I just think that are important to maybe just note as kind of some takeaways as we’re kinda wrapping up is the community piece. I know we talked about that and you talked about knowing who’s in your community and maybe it’s not somebody in your community that necessarily is at your job, but somebody you hang out on the weekends, it has a, a really cool, fun thing that they do. And, and kind of figuring out how you can connect with one another with those things. And then also the one thing you spoke so much of, of the improv piece and I think we all can relate to this, whether you’ve done improv or whether you’ve not, or whether you woke up and didn’t stick your foot in your mouth this morning … Michael Beers: Yeah. Sierra Royster: … Is, is the confidence piece. And anytime that we can, and you’ve talked about that before of like confidence and community are really what can build success in employment, but also in somebody’s life in general if you can go into those different situations in, in between into that interview or even into that first day of the job or the 30th day of the job, when you don’t like the person next to you [laugh] and you can still, you can still know what to say and how to say it, and have that confidence of who you are. And I think that community and that support piece is really crucial. So thank you for sharing all these things. I think we will I’ll have you send some links over for different maybe resources for improv or some ideas of where people can start looking for outside of the box, thinking on some of those. Michael Beers: Yeah, absolutely. I’ll send I’ll send over some links to base programming also some movies that we’ve been making. And I know we talked a lot about improv, but for the people a lot of the people who have been involved with our improv class for a number of years, and, you know, with the pandemic, you know, separating us for, for so long physically video making and sharing videos we made at home while we were isolated became how we stayed connected. And it really kind of snowballed into you know, getting films made and written. So we’ve and that’s done. And just quickly, the, the way I I, I really like this program because it is, it started, a lot of it started with improv, but now we’re into movie making. And if you’re working with students to make a movie, there are so many transferrable skills when it comes to set design, technology, running cameras, promoting, you know, writing you know, so again, if you’re not making movies, those are skillsets that are gonna be useful in other places. So, but it’s that buy-in, it’s that buy-in because it’s, it’s movie making versus, you know, if you set somebody up with a, you know a job shadow that they may not be interested in. So I’ll share those, those are on the the, the Summit YouTube channel. But yeah, check those out. And yeah, happy to, happy to answer questions and have this conversation whenever. Sierra Royster: Yeah. And I would say if I … Improv, we, we talked about it as an activity, right? And as something that you can do. But I think as you started off at the very beginning, improving what you’re doing, yeah. You know, whatever it is being able to roll with that, that’s their interest and, and fold and pull out those skills. Cause I think just like the movie making stuff of, there’s so many hidden skills and, and everything that you’re doing, as long as you can find those and then then give, give the opportunity for them to be exposed and, and learn and grow from those opportunities. So I’ll also send over, you’ll have access to, we did mention the APRIL youth coordinators connect calls. Those are times where Centers and other disability organizations are coming together to talk about what they’re doing for youth and young adults for programming and employment being one of those things that they’re working towards some of those soft skills or the pre-employment transition skills and things. So those are some of the things on top of many, many other things that they talk about. But I think anytime you can get a group of people together to share minds, there’s always gonna be some good information. So. Well, thank you. Great. And I guess we’ll connect soon. Michael Beers: All right. Big round of applause for Sierra, everybody. Sierra Royster: Big round of applause for Beers. Sierra Royster: People listening to the podcaster, oh, they’re all applauding right now. Sierra Royster: They are. Announcer: You’ve been listening to the AoD Disability Employment Technical Assistance Center podcast. In today’s episode, Sierra Royster from the Association of Programs for Rural Independent Living (or APRIL) spoke with Michael Beers from Summit Independent Living. You can learn more about APRIL at www.april-rural.org (https://www.april-rural.org/) and more about Summit Independent Living at www.summitilc.org (https://www.summitilc.org/). The AOD Disability, Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group (https://www.lewin.com/) and TASH (https://tash.org/), created by a grant from the Administration for Community Living (https://acl.gov/) to provide evidence based training and technical assistance to Administration on Disabilities (https://acl.gov/about-acl/administration-disabilities) grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AoDDisabilityEmploymentTACenter.com (https://aoddisabilityemploymenttacenter.com/) for news and alerts about upcoming webinars and podcasts. You can follow us on Facebook (https://www.facebook.com/AoDEmploymentTACntr) and Twitter (https://twitter.com/AoDEmployTACntr). Music for the DETAC Podcast is an original composition and performance by Sunny Cefaratti (https://themusicalautist.org/about-sunny/), the co-director and autistic self-advocacy mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org (https://themusicalautist.org/). We’ll have another episode on competitive integrated employment for you in the near future. [music plays] This discussion was originally recorded on February 15, 2023. This audio recording and transcript has been lightly edited for content and clarity.

8. 

   2 Feb 2023

   The New Normal

   In The New Normal, we talk with Nicole LeBlanc, DETAC’s Self-Advocate Advisor, about the consequences of the COVID-19 pandemic for people with disabilities – mostly detrimental in terms of increased risk and unemployment, but also some changes that have benefitted people with disabilities such as remote work and telehealth. Presenters Nicole LeBlanc is the Self Advocate Advisor with DETAC. Nicole has a keen ability and interest in public policy and excels at communicating the needs of people with developmental disabilities to public officials. Nicole worked for over eight years at Green Mountain Self-Advocates in Montpelier, Vermont as Advocacy Director supporting her peers with disabilities to feel comfortable talking to their elected officials and as a Project Assistant for the Inclusive Healthcare Partnership, working to help people with disabilities get their healthcare needs met. She has had internships at the Administration on Intellectual and Developmental Disabilities and Association of University Centers on Disabilities. Since 2011, Nicole has consulted for Self-Advocates Becoming Empowered and the Autistic Self-Advocacy Network. In 2018 Nicole served as the Dr. Ruth Sullivan policy fellow and from 2018 to 2019 she was the Self Advocacy Resource and Technical Assistance Center (SARTAC) fellow at NDRN where she produced “Real Jobs for Real Pay”, a booklet advocating competitive integrated employment. In 2019 Nicole joined HSRI as the Coordinator of the Person-Centered Advisory and Leadership Group (PAL-Group) in the National Center on Advancing Person Centered Practices. Nicole just recently accepted a contract role with Not Dead Yet to educate Maryland and Virginia legislatures on the dangers of physician-assisted suicide laws. In 2020 Nicole created the toolkit called “Why Employment Matters” on talking to families about employment. She has given talks, webinars and keynotes throughout the country on Autism, the dignity of risk, presumption of competence, Person Centered Planning, healthcare access, the “new normal” after COVID-19, tele-health, Build Back Better, voter access, competitive integrated employment, self-managed services and Home and Community-Based Services (HCBS). In 2019 Nicole won the David Joyce Advocate of the Year award for outstanding policy advocacy on Capitol Hill and in 2022 she received the Steve Bartlett award that recognizes and honors a person in the private or public sector who demonstrates a strong commitment to using the political system to advance public policy in support of people with disabilities. She earned a certificate of professional studies from the University of Vermont. In 2018 Nicole was the first self-advocate to complete from the Vermont LEND program. Her motto is: Control your own destiny or someone else will. Donald Taylor has been with TASH since 2014, where he is the Manager of Membership & Communications, responsible for membership and chapters, data systems and communication, and collaborates closely with other staff to make sure TASH systems support their work. Donald comes from a background of data systems, operations and business analysis, going back to the 1990s. Donald came to the world of disability while pursuing a degree in history. The history profession is deeply interested in the eugenics movement of the early twentieth century and fellow students studying biomedical systems of oppression inspired in him the desire to make a contribution to this aspect of social justice. Transcript Announcer: You’re listening to the AOD Disability Employment Technical Assistance Center Podcast, where we learn from people who are working to improve competitive integrated employment and economic outcomes for people with disabilities. In today’s episode, we talk with Nicole LeBlanc, DETAC’s Self-Advocate Advisor, about the consequences of the COVID-19 pandemic for people with disabilities – mostly detrimental in terms of increased risk and unemployment, but also some changes that have benefitted people with disabilities such as remote work and telehealth. [music plays] Donald Taylor: Nicole, introduce yourself for our listeners. Nicole LeBlanc: My name’s Nicole Blank. I live in Silver Spring. I wear a gazillion hats. I serve as the Self Advocate Advisor for the Disability Employment TA Center. I’ve been in the disability field since October 2007. I’m originally from Vermont. Donald Taylor: And how did you get into the disability field? Nicole LeBlanc: Well, I discovered the self-advocacy movement in Green Mountain Self-Advocacy back when I lived in Vermont, when I was transitioning into a shared living provider in getting developmental services. And I discovered the self-advocacy movement was one of the best kept secrets in Vermont, you know, and it’s like, and I, prior to the Selfy movement, you know, somebody always wished to be normal. I was always teased, picked on. I was always like the odd, weird kid, the outcast you could never fit in socially. Donald Taylor: And then how did you end up coming to Washington, DC? Nicole LeBlanc: Well, I discovered, my first time I stepped foot in the nation’s capital was a 2009 disability Policy Seminar where I met Kareem Dale, Lois Curtis, Sarah Peterson, and I was like, wow, now this is a place I could see myself as somebody who’s always been following politics and stuff – the Bill Clinton sex scandal – somebody who’s always wanted to be a change agent. Donald Taylor: So, you’re one of the most opinionated people on the issue of COVID I know. Tell me what are your feelings overall about the, COVID and the pandemic are. Nicole LeBlanc: The disaster that didn’t have to be this bad. Especially given that, you know, Bill Gates is warned about the threat of a pandemic since 2014. It’s like from day one, if we had just given told everybody ware M95s, you know, and invest in cleaning air and like, and most recently studies have come out showing that people with autism, neurodiverse populations are at high risk of long COVID. You know, an autistic doctor in Vermont opened up a practice just focused on neurodiverse populations, all because she was seeing, you know, a massive wave of long COVID in the autism and neurodiverse population. Because people with autism often have an overreactive immune system. Donald Taylor: So you’re one of the most, the, you’re in probably like the 95th percentile of most-cautious-around-COVID people I know. Tell me what your personal thinking on the issue is. Nicole LeBlanc: Well, until this becomes the common cold, masking is the new normal. You know, if everybody would just, you know, you know, and if we would spend on focus on cleaning the air, you know, that would help, you know, and hey, you know, and me personally, you know, just doubling up wearing an M95 mask makes me less anxious. Donald Taylor: I just was talking with someone else here in the office and like, you know, we were talking about like when we mask and when we don’t mask. You know, there’s places where I obviously always wear a mask, like on the subway. Sometimes I don’t wear a mask when I go into the grocery store. I mean, I do most of the time, but at this point I feel like I don’t know what to do. Like, I feel like there’s no guidance. Nicole LeBlanc: Yeah. Donald Taylor: Everybody’s been cast loose. It’s figured out for yourself. I mean, I still, to this day, I still don’t do any optional activities. Like I don’t go to restaurants. I don’t go to bars. Like, I’m not going to a public place still, especially not right now with a whole new [strain]… Nicole LeBlanc: Yeah … Donald Taylor: … the middle of winter … Nicole LeBlanc: … and flu season and having flu on top of it. Donald Taylor: Yeah. Um. Nicole LeBlanc: Like, you know, and because when you look back, you know, at beginning where you saw, you know, flu cases and norovirus, you know, if anything that is shown is, you know, having bad flu season doesn’t have to be the norm, if we, you know, buck-up and make sacrifices, like masking, hand-washing. The same way we stop stomach flu is the same way we stop this pandemic. You know, stomach flu is a super-spreader, just like COVID and it can be stomach flu, just like COVID can be spread asymptomatically. Another comparison: how many of us grew up in the nineties, lived with people who smoked cigarettes? You know, in the nineties, kids got, it was common for children to get massive gazillion ear infections every single year be due to secondhand smoke, being exposed to it in an indoor setting. As soon as my parents, all my uncles, everybody stopped smoking, people like me stopped getting a million chronic ear infections, which all those antibiotics now, antibiotic, even though they’re getting rid of the chronic ear infection, they’re now causing colon cancer, which is why colon cancer screening is 45. It’s like it’s airborne. Cigarette smoke is airborne, you know, we know we need to look at these COVID mitigation measures as, you know, just like airport security, you know, we, what do we do when we go to the airport? We take off our shoes, go through all that, you know, and put up with pat downs. As much as we hate being patted down a million times, you know, we just suck it up and do it. It’s why we, you know, show up two hours prior to flight. It’s no different than airport security. Donald Taylor: What is your own sense of what we should be doing right now? And … Nicole LeBlanc: Right now everybody should be, you know, keep doing, you know, hand washing and masking and we should be spending billions of dollars, you know, stop spending money on war and spend money on cleaning the air. This is airborne. It is. It’s circulating in the air. Even after somebody leaves the room, you know, their germs are still in the air. You know, that’s the thing. The World Health Organization, everybody, needs to say this is airborne. And we need to make vaccines, hopefully, you know, there’s talk of nasal vaccines that can go through the nose that block infections. Until we get something like that, that can block infections, get rid of the threat of long COVID, make this just become just another common cold where, you know, take the Alka Seltzer Plus, zinc, vitamin C, and all that, Vicks VapoRub, until we get to the point where it’s just a regular cold with no long-term complications like Crohn’s disease, gut dysbiosis, and all that, until we’re not hearing about long COVID, it ain’t gonna be in the rear view mirror. You know, when we stop hearing about all these complications, people having strokes. I know one person, a therapist who also has autism, she caught COVID twice and she had a mini stroke. You know, these midigation measure the, you know, they not only protect you, but they protect the immune-compromised, the highest risk populations. You know, when the high risk populations are protected, everybody wins. You know, health is the real wealth, not silver and gold, as Gandhi would say. Donald Taylor: So let’s talk about the economic impact of COVID. Tell me how it’s affected the employment of people with disabilities. Nicole LeBlanc: Well, in the beginning it led to, you know, massive job loss, especially for central workers and people at high risk, you know, needing to get unemployment insurance. You know, one, you know, a big plus was all the unemployment, extra unemployment bonus bump, along with stimulus checks, which, you know, personally, I say, you know, we should be doing stimulus checks, you know, ongoing, every month. We should move to universal basic income. Plus it would also helps mitigate the loss of income needed when it comes to needing to quarantine and all that. And we need to adopt paid sick leave in this country. You know, right now, you know, people, the CDC should not be telling people, oh, five days quarantine, five days. You can go back, but five days math, you know, you should, it should be complete 14 days, you know, go back when you test negative. And, and when it comes to, you know, planning for disasters, like responding at it’s, you know, in the beginning you used to say upfront, you know, we need to play the better safe and sorry mentality until we figure out how this whatever spreads, which you look back when we were doing all surfaces and all that, and then all of a sudden now we more clear that this is airborne. Donald Taylor: So tell me, tell us specifically how it’s impacted people with disabilities. Like something you’ve talked about is how, because people with disabilities are overrepresented in the essential workers’ field, it’s really impacted them a lot more than other people. Nicole LeBlanc: Mm-Hmm, it’s what, you know, many people with disabilities work in food, filth, flowers, you know, and while the hazard pay and stuff like that is nice, in addition, you know, many people had to stop working in the beginning due to their risk factors. So that unemployment bump and payments definitely helped. Donald Taylor: And how is … Nicole LeBlanc: In addition the stimulus checks, you know, also generally speaking, gave, you know, peace of mind. You know, they enabled us to, you know, absorb the cost of this pandemic universe of, you know, buying technology, buying N95 masks and other work-from-home equipment. Donald Taylor: And how has it affected people with disabilities via the way it’s affected people with disabilities’ support staff? Nicole LeBlanc: Well, in the support staff, we’ve had lots of staff turnover. One thing it’s nice is the [Medicaid] Appendix K (https://www.medicaid.gov/resources-for-states/disaster-response-toolkit/home-community-based-services-public-health-emergencies/emergency-preparedness-and-response-for-home-and-community-based-hcbs-1915c-waivers/index.html) flexibilities, you know, allowed a certain bunch of, you know, bureaucracy that you could say be waived, which, you know, if there’s any one thing when we look at the normal Appendix K should be part of become standard, part of the new normal, you know, and having, you know, hybrid, you know, having virtual options for everything. Conferences, you know, making telehealth accessible and not insisting on, oh, everybody show up at the office five days a week. You know, many people with disabilities prior to this pandemic were denied for work from home as an accommodation. You know, telehealth is also good, it’s convenient, it saves the cost of transit, you know, wasting time sitting in traffic. Especially if all you you’re going to do is, oh, these are your blood test results. These are your labs. Your B12 is low, your vitamin D is low. For instance, somebody who gets regular blood work, you know, telehealth allows you to do nutrition appointments. I just had a nutrition appointment this morning with my nutritionist, and tomorrow I have one appointment with my naturopath, which will all be virtual, click on a link. No need to run around. The big thing with telehealth is, you know, we need, still need to work on making platforms easier, more accessible. Especially when we look at the older generation that isn’t as tech savvy, you know, when we make everything accessible, plain language, you know, everybody wins regardless, disability or not. You know, keep it short, sweet, simple, to the point. Donald Taylor: This is sort of reiteration of the previous question, but what practices that have come about from the pandemic and our response should be preserved to enhance accessibility? Nicole LeBlanc: Well, preserving, you know, Appendix K, telehealth, remote therapy, having all college classes have a virtual component, not just a face-to-face component. Have everything hybrid between business, work, conferences, events, healthcare, you know, we should bring back doctor house calls. Like if we look at, you know, that’s one thing that could help right now: we’re getting, making vaccine access more accessible to people. In the beginning here, when the vaccines first came out, the vaccine website to go get a vaccine or register for at a clinic is not very accessible. First, I called my primary care doctor, they say, oh, go call 211 or 311, Montgomery 311, and then call that and to get the runaround. Finally, I asked somebody I know at SEEC, which is an agency right down the street from me, and they’re like, here, fill out this paperwork: we’ll take you. We’ll take care of you. Yes, vaccine access needs to be accessible. I even sat on Zoom calls, you know, all on, and a Facebook group, all on figuring out how to get people with disabilities vaccine access and brainstorm, figuring out. And one thing, all pharmacies and all doctors should have all vaccines, whether it be Pfizer, Moderna or whatever. It’s like, you know, you didn’t have to go through all these hoops. When we do flu vaccine, I can just walk into Walgreens here, fill out the paperwork, there’s your shot. And that’s that. Keep it short, sweet, simple, to the point. Donald Taylor: What should grantees know about how they can support their remote staff? Nicole LeBlanc: Well, provide job coaching, provide natural supports. Many people with disabilities, especially autism, who don’t have intellectual disability like me, do not get any HCBS supports. Voc rehab only provides short term, 90 days, and then you’re on your own. You know, having supports, using Google Docs, using, you know, accessible meeting platforms, providing help with covering cost of certain things, work from home stuff, doing check-ins, you know, not holding, when it comes to sitting up meetings, not holding back to back to back to back Zoom meetings without giving people a break to breathe. One downside, when we look at before this pandemic, and after, you know, with everything, a lot of meetings being virtual is, you’re not given that five minutes to breathe between meetings. Whereas when we were all face to face, we had at least five, 10 minutes to breathe, you know, run off to hear, run off to there. And quite often you’re seeing people, you know, in the beginning they were working more than 40 hours or whatever their regular schedule was and just jamming stuff in, in addition things like, you know, having multiple turnover, supervisors and all that, can lead to burnout. As somebody who used to work for state government, who left state government in 2020, due to burnout. Donald Taylor: How, how have people with disabilities been taking advantage of the new options for teleworking and other remote access? Nicole LeBlanc:It’s led to, you know, increased employment opportunities. You know, many people disabilities, you know, right now say, you know, we should not be rushing people back to an office. You know, we’re not endemic, first of all. And you know, and the new normal needs to be flexible. The new normal needs to include the needs of the disability community. You know, we do not wanna return to a normal, a normal that excludes us. Flexibility and control is essential. In addition, you know, we should, we should look at moving as a society and move to a shorter work week, which will help reduce burnout, you know, have make every Friday, let’s say, you know, a mental health day, which will help cut down on the burnout, Zoom fatigue. Focus on, you know, a New Year’s resolution, focus on slowing down, live in the moment. When we look at our, our culture so much is hustle, hustle, hustle, jam, jam, jam. Whereas you look at countries like Iceland, it’s so paced, laid back, focus on living in the present. You know, in addition here, you know, we should have a loose dress code. That’s been the best things, you know, is not having to always adhere to a conservative dress code. As somebody who comes from Vermont, who prefers laid back, you know, I’m not, you know, the person who’s like big on suits and all that. Laid back dress code is essential in the new normal. Donald Taylor: Tell us about the trauma that many of the especially vulnerable people have felt as a result of the rest of the population going back to normal. Nicole LeBlanc: Well, it’s, it makes people never scared, cuz long COVID is still a threat that people, the general public and our government continue to downplay. From day one, we’ve all said this was gonna be a mass-disabling event. We need to approach this pandemic as it’s, act like it’s cancer. If cancer was spreading like this, would we be downplaying it? No. Yeah. Every time, you know, if we were approaching this as if it’s cancer, we wouldn’t be acting this way, you know. Cause when you hear the word cancer, the C-word, feels like a punch in the gut. And it just makes everything stop, your world stop, every time you pick up the phone and hear somebody say that word. You know, we’ve seen health disparities, you know, many people with disabilities were denied ventilators, denied the ability to have staff come to them if they have to go to the ER, the hospital, which is, you know, many of us here, you know, also have difficulty, you know, communicating, like communicating events, da da da. Like for instance here, you know, on March 13th, like ended up going to the ER, when what was determined to be a panic/anxiety attack. I woke up on the 13th having chest pain, sweating, which prior to this year, I’ve never had panic attack in my life. And if anything, you know, this pandemic has given the whole world a simulation of what it’s like to be disabled. When you look at ADD, it’s raised anxiety levels, it’s raised concentration levels. And we look at the great resignation, you know, one thing that that led to the great resignation is people are tired of burnout. People are tired of not having control. And, you know, authoritarian-type management styles are not gonna cut it going forward. You need to focus on, you know, if you take care of your workers, meet their needs, you know, then you’ll have a better bottom line. It’s time to put people before profit. Health is the real wealth, not silver and gold. You don’t know how good you have it till it’s gone. You know, we take, you know, this pandemic is exposed how much we take for granted. Donald Taylor: How has increased flexibility in employment benefited people with disabilities? Nicole LeBlanc: Well, it’s led to, you know, more people with disabilities getting jobs. It’s definitely increased, you know, and, and we look at the worker shortage, here has helped, which, you know, which right now, if we really truly wanna address the worker shortage, you know, one thing that would be smart is to get rid of the benefit cliffs in SSDI, where the all-or-nothing cash cliff, and get rid of asset limits, and earnings caps. SSI, SSDI, expand Medicaid buy-in. You know, doing that would help long-term and solving the workforce crisis, you know. And then the DSP shortages, you know, the direct care. We need to stop paying direct support providers, lousy wages. You know, you make more working in an institution than you do in a HCBS setting, which isn’t fair. And then, of course, if you self-direct, one advantages of that, not only can it, you know, possibly reduce COVID risk exposure, compared to being in segregated settings where the risk of COVID is off the charts; by doing self-directed services, it also allows you to put in measures to reduce risk and pay your staff a higher wage. So instead of paying somebody, oh, let’s say 15, you could maybe pay somebody, I don’t know, 20-something and take less hours. Like for instance, agencies in Vermont I know that are allowing people to be more flexible with taking less hours and paying more, no staffing prices, yet people that are keeping wages at 15 or whatever are still struggling. Everybody in this country deserves a livable wage. We must get rid of sub-minimum wage. It’s time that we start treating our caregivers with respect, and it’s time that we start supporting families. Now many families talk about how they feel forgotten. They feel like they’ve been, they feel disposable. I know one one mother in Vermont who developed long COVID from the Delta variant when she and her son with autism, who uses FC or supported typing, caught it back in 2021. And it’s, like, she has struggled massively to deal with getting support for her son, so that she can focus on healing. You know, and paid sick leave needs to be mandatory and paid leave in general, you know, the era of going to work for the cold is over. It’s time for common sense solutions to fight our nation’s gravest challenges. And it’s time to get comfortable with being uncomfortable and build and foster resilience. Now, we must use this crisis and use it to prevent the next one. It’s time to, you know, do the dirty work and let’s make this the last pandemic we ever have to deal with. Donald Taylor: Nicole, thank you for talking to us today about an issue I know is very important to you. Nicole LeBlanc: Well, hank you for having us, listening us today and joining us on this program. We look forward seeing you in a future episode. Announcer: You’ve been listening to the AOD Disability Employment Technical Assistance Center podcast. Today we spoke with Nicole LeBlanc, DETAC’s Self-Advocate Advisor. The AOD Disability, Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group (https://www.lewin.com/) and TASH (https://tash.org/), created by a grant from the Administration for Community Living (https://acl.gov/) to provide evidence based training and technical assistance to Administration on Disabilities (https://acl.gov/about-acl/administration-disabilities) grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AoDDisabilityEmploymentTACenter.com (https://aoddisabilityemploymenttacenter.com/) for news and alerts about upcoming webinars and podcasts. You can follow us on Facebook (https://www.facebook.com/AoDEmploymentTACntr) and Twitter (https://twitter.com/AoDEmployTACntr). Music for the DETAC Podcast is an original composition and performance by Sunny Cefaratti (https://themusicalautist.org/about-sunny/), the co-director and autistic self-advocacy mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org (https://themusicalautist.org/). We’ll have another episode on competitive integrated employment for you in the near future. [music plays] This discussion was originally recorded on January 5, 2023. This audio recording and transcript has been lightly edited for content and clarity.

9. 

   18 Feb 2022

   “Am I Not?” A Conversation with Angela Greene on Leaving the Sheltered Workshop for Competitive Integrated Employment

   In this episode, we talk with Angela Greene. After 21 years in a sheltered workshop, she left in favor of competitive integrated employment as a Dining Room Attendant at the University of South Carolina. She is also a founding member and secretary of I.M.P.A.C.T. South Carolina (https://impactinsc.com/). This podcast is a continuation of Angela’s presentation during the DETAC webinar, Employment First 2.0: Developing a Foundation for Excelling Systems Change Efforts through Legislative Action (https://aoddisabilityemploymenttacenter.com/employment-first-2-0-developing-a-foundation-for-excelling-systems-change-efforts-through-legislative-action/). Angela is also a poet. Listen to the end of this podcast to hear her read two of her poems, “Am I Not” and “Everybody Wants to Rule the World”. Transcript Announcer: You’re listening to the AoD Disability Employment Technical Assistance Center podcast, where we learn from people who are working to improve competitive integrated employment and economic outcomes for people with disabilities. In today’s episode, we talk with Angela Greene. After 21 years in a sheltered workshop, she left in favor of competitive integrated employment as a Dining Room Attendant at the University of South Carolina. She is also a founding member and secretary of Impact South Carolina. Today’s podcast is a continuation of Angela’s presentation during our webinar, “Employment First 2.0: Developing a Foundation for Excelling Systems Change Efforts through Legislative Action”. Angela is also a poet. Listen to the end of this podcast to hear her read two of her poems, “Am I Not” and “Everybody Wants to Rule the World”. Amy Gonzalez: Hello everyone and welcome to a podcast that we have today featured with self advocate, Angela Green. This podcast is a continuation of the National Community of Practice webinar that we facilitated in January, “Employment First 2.0: Developing a Foundation for Excelling Systems Change Efforts through Legislative Action”. In that webinar, we featured a few grantees that were moving the needle on competitive integrated employment through legislative action. So we heard from a Center for Independent Living in South Carolina by the name of ABLE South Carolina. And through that, we identified a self advocate that was formally in the sheltered workshop. So we are with Angela Green today, and we are just delighted to have her with us. And what we’re going to do today is take a deeper dive into Angela’s journey to competitive, integrated employment. And so what I’m going to do now is start off by welcoming Angela. Angela, thank you so much for being here with us today. We are so excited to talk to you more about your former life in a sheltered workshop and about your job as a dining room attendant. What I am going to do is just talk you through a series of questions that we have for you at the DETAC. Can you introduce yourself again, please? What is your name? Angela Greene: Hi, my name is Angela Greene and I’m a self advocate. Amy Gonzalez: Thank you so much, Angela. Can you please tell us what city and state you are from? Angela Greene: I am from Richland County, Columbia, South Carolina. Amy Gonzalez: South Carolina. That is wonderful. Now what we understand based upon your excellent presentation in January, Angela, is that you formally were in a sheltered workshop for 21 years from 1994 until 2015. In the amazing presentation that you gave, you talked a little bit about working in a sheltered workshop Monday through Friday, making about $3 an hour. Can you tell me a little bit more about what you did in the sheltered workshop when you were there? Angela Greene: Well, when I was in the sheltered workshop, what my jobs were: cleaning offices, I would dust offices, and I would do bathrooms and wipe down tables and take trash out, that sort of thing. Amy Gonzalez: Now were these tasks something that you like to do or did they just tell you that you needed to do those types of jobs there in the shelter workshop? Angela Greene: Um, It … it’s a … it was more of not … I didn’t really, wasn’t crazy about my job and jobs I did. No, I, I didn’t fancy them. Amy Gonzalez: Yeah. I can understand that, you know, when somebody is, isn’t given a choice to choose the type of work they wanna do that it can cause feelings of, you know, not really being excited about the work that you’re doing. What can you tell me about the sheltered workshop? Did you have friends? Was it lonely? Was it a scary place? What, what can you tell me about being there? Angela Greene: Um, it was not a scary place, but I didn’t really have friends because as you can see, I’m, I’m a very outgoing person, but the kind of relationships, if you will, I had at the workshop, weren’t very friendly. So no, I didn’t have a lot of friends. Amy Gonzalez: Well, I’m sorry to hear that, but, but I know that you have some exciting things to talk about relative to, to your new job. And, and before we take a deeper dive into the job that you have now, I wanna ask, Angela, did you ever ask or talk to maybe, uh, the staff in the sheltered workshop about getting a job somewhere else in the community? Did you ever let them know that you wanted to try something different? Angela Greene: Yes, I did. Amy Gonzalez: And what, what would happen after you told them that? What would they do? Angela Greene: They got that out. They felt that I didn’t have my, they felt that I wasn’t capable, that I didn’t have the capabilities of, you know, doing more. Amy Gonzalez: Well, that can definitely be frustrating when people tell you that you are incapable of something when you know that you can do it, right? Angela Greene: Right. Amy Gonzalez: I wanna talk a little bit about a pivotal moment in your life that you talked about during your presentation, Angela. You said that in 2015, you went to a new agency. You talked about the new agency believed in you and that they helped you gain employment in the community. They took a chance on you. Can you tell me a little bit more about how your new agency worked to help you get a job and learn more about the things that you like to do? Angela Greene: So, wait minute, I moved here, but I originated from Manning. And so how I got in the program was through other programs, if you, um, um, a lady named Ms. Christie and Ms. Val. And at that time they had supportive living and that’s how I got connected with Babcock [Center]. And they, um, helped me, um, find employment. Amy Gonzalez: So you were able, through your supported living program, to learn that there was other, other agencies who could help you and provide services and help you connect to getting a new job. And that’s when you ended up going to the new agency. Is that, is that right? Angela Greene: Yeah. Amy Gonzalez: Okay. Got it. Got it. So how long were you with that new agency until you were able to, to get your new job as a dining room attendant? Angela Greene: It was just like magic. If you – I wasn’t going to use magic – it was just, like once I came here, I moved here in 2015 and I was saying, about a couple of months and how I got connected, how I was able to – was again, was the job coach program through the job coach program. That’s when I gained, um, the competitive employment. And so now I have been working for USC for seven years. Amy Gonzalez: So you are working at the university in South Carolina for about seven years. That is excellent! Seven years is a really long time. And it shows, Angela, your commitment to your job and to your employer. So let’s talk a little bit about your job. What do you do as a dining room attendant? Angela Greene: Well, more so, what I do where I take out trash, I do wipe down tables and then I sweep the floors. And sometimes I stack up the utensils if needed. And then I go in the other units, if they stuff need wipe down, I wipe down. Then I stack up their utensils and stuff as well. And then sometime if someone needs somebody down, the other units, I do that, you know. Amy Gonzalez: Excellent. So it sounds like, yeah, you may do some cleaning here and there, but there are way more aspects of your job, like making sure the utensils are clean, they’re in order, they’re stacked up – because people need those utensils to eat. So that sounds like an important job, Angela. Now, what is your shift? Like what hours do you work? Angela Greene: I’m more from it’s 11 to 5 and that’s, I kind of go in like more the rush hour. That’s where a lot of the kids are be coming in at lunch time, per se, so, okay. That’s, that’s 11 to – yeah – 11 to 4, and out of four days a week. Amy Gonzalez: Yeah. Okay. Four days a week. Got it. And is it a same schedule, like the same days every week, or do you change days? Angela Greene: Same. Monday. And the only day is I have off is Thursday. Amy Gonzalez: Thursday. And that’s why you’re here with us today on this webinar on a Thursday – because you had a day off. Well, that’s great, Angela. And out of all the work that you do, all the tasks with the utensils and the cleaning and making sure things are in order, what is your favorite task to do? Angela Greene: Well, my favorite is this seeing the kids satisfied and a job well done. This, giving them, um, you know, encouragement, I would say through the work I do, but some I come across me, some days look, kind of sleepy or down or whatever, and I’ll come by and say, are you doing all right, young man, are you doing right? And they’ll be like, yes, I’m doing fine. So that’s my biggest enjoyment. Amy Gonzalez: That’s really nice. It’s, it’s that social part: connecting with people, right? Talking to people and having relationships with people, which seems very different, um, than the work that you would do at the sheltered workshop. It seems like here at your job as a dining room attendant, Angela, that you have opportunity to engage with people and talk to people. Um, and just going back to what you said earlier, right, you’re an outgoing person. You love to interact with people and to socialize. Do you know Angela, uh, what your hourly wages, do you know how much money you make on the hour at work? Angela Greene: Well, there’s minute it’s $7.25 an hour. And I … Amy Gonzalez: Oh, that’s great. Angela Greene: Yes. The $7.25. And what I do sometimes I times – I add up my hour and stuff, so back to $7.25 and I work five hours a day. So. Amy Gonzalez: Excellent. So you, you do some basic math and you have a handle on, um, you know, kind of your money and what you get paid and things of that nature. That’s great. Cuz money matters is very important. Angela Greene: Yes. Amy Gonzalez: Regardless, right? If a person has a disability or not, it is important, um, to be abreast and aware of, kind of, a financials, right? Amy Gonzalez: So Angela, I’m gonna transition over. We talked a little bit about, um, your former life in a sheltered workshop – what you were paid, the environment, how you felt being there. Then we talked about that big change in your life, when you got a new provider in 2015, and you were able to get your new job as a dining room attended at USC. We talked a little bit about your new job, about socializing, about your tasks, But what I’d like to transition over to now is some of your advice. Angela, to this day, currently, there are thousands of people across the country that are still in sheltered workshops. There are people who desperately want to get out of the shop, who are talking to their support staff, like you are, who are trying to use their voice to let them know that they’re ready for a job in the community. But countless individuals are being told that they can’t be in the community, that they are unable to achieve competitive integrative employment. And what I wanna know, Angela, is what tips you have, what tips or advice do you have for people that want to get out of sheltered workshops? Angela Greene: First … Amy Gonzalez: What would you tell them? Angela Greene: First and foremost, love yourself. And be true to you. Nevermind – don’t fall into the traps of people saying what you can’t do. If you have, if you have the passion and the drive and mainly support. I think that’s what it’s come down to. Yes, you can have all that, but you need strong people, good people in there that encourage you. Find you some good, encouraging people. And don’t – if I could use this – don’t try to connect with dream killers, cuz there are – it’s really your dreams, and you are connected with your dreams. It’s your goals. Nobody knows you, but you, and knows what you can, and knows what you cannot do, but just, but you, you know. So that what I would say. Amy Gonzalez: That is powerful. Angela. I’m reminded of the other advice that you gave during your presentation, which says, you know, follow your dreams, – no matter what other say; tune out the negative and always try to embrace thoughts of inspiration instead of negativity. I, I really appreciate that quote that you just gave: don’t connect with the dream killers, right? Angela Greene: Right. Amy Gonzalez: Stay away from those. Go follow the people, and go to provider, and be with, you know, CILs and other grantees that believe in you, and that truly know that you are able to achieve competitive, integrated employment with the proper supports. That is just such powerful advice. Angela. And what do you, what would you tell someone who’s trying learn about what they like to do? What would you tell them? How to learn about new jobs and explore different areas? What would, what advice would you have for a self advocate who’s still learning about themselves and what they like? Angela Greene: And again, like I said, I would, it was go back to support. In order to, I would say, reach for those goals, you have to have a good team as well, because if you don’t have a good team and trying, you trying to connect you to your dreams, then it won’t work. So that’s what I feel is: you can achieve any dream, as long as you have a good support system, and good people to back you up, and that really believes in you. And once you have that, it’s just like: iron do sharpen iron. And if you don’t have that iron, then it won’t; you know, so that’s when I feel this. There’s a lot of research out there. If you are computer savvy, go on the computers, look at the different websites and see what’s out there. There’s a lot of help out there. It’s just have to know and knowing how to connect with the help, you know. That’s what I believe. Amy Gonzalez: That’s a great recommendation. So for any self advocates that may be unsure of how to get their journey going to competitive, integrated employment is: find people that believe in you, that are positive, that can give you the support that you need to explore your options and identify the best job path for you. That is just such a great set of recommendations, Angela. Now, before we wrap up, I wanna ask if there’s anything else you wanna tell us. I know, Angela, I understand that you have a great passion for poetry. And so I’m opening up the opportunity to see if you would like to share some poetry with us today on our podcast. Angela Greene: Yes, I would. Amy Gonzalez: Let’s hear it! Angela Greene: I have two and I hope it’s – I’m not trying to be long here. There we go. This one is called “Am I not?” Angela Greene: Okay. Angela Greene: Am I not great? Even if I don’t wear a Cape? Am I not smart? Even if I didn’t go to Harvard? Am I not lovable? When I don’t get any? Am I not helpful? Even when no one helps me? Am I not encouraging? When I have to encourage myself? Am I not thankful? When the word doesn’t seem to be? Am I not? Amy Gonzalez: “Am I not?” How amazing. Angela Greene: And this one is called, everybody wants to rule the world. Angela Greene: Everybody wants to rule the world, but no one wants to help it. What am I saying? If you ask millions of people, why are they not happy Nine out of 10 would say job. You may ask them why. Then they would say, because I’m not the boss. Next, I don’t have a house like my neighbor. Why would you a house like theirs? You don’t know what they had to pay for it. Here’s another one. My child is only a C student. I wish they could be a student like others. That may be so now, But remember that C student could become The coolest, smartest actor, best selling author and motivational speaker there is. On the other hand that A student you wish you could have been Started using drugs, disrespecting coworkers and lost that big, fine house in that fancy neighborhood you wish you lived in. Are you ready to help the world? Amy Gonzalez: Wow, amazing, Angela! Bravo! This is such awesome work! You can tell that you just put all your heart into these poems that you’re creating. And so thank you so much for are taking the time, uh, to share some of your poetry with us today. Angela, before we wrap up our podcast is there anything else that you want to tell us about your life, about your job, about the wonderful life that you live as an independent woman in South Carolina? Angela Greene: No. I think everything is well and I, I think I’ll kind of ended on that note. Amy Gonzalez: That sounds great. Well, on behalf of the Disability Employment, technical assistance center, we would like to thank you so much, Angela, for participating in a podcast through the January community of practice webinar employment. First 2.0, developing a foundation for excelling systems change efforts through legislative action. We appreciate the opportunity to engage with you and we look forward to keeping in touch with you and your wonderful work and your job, uh, at USC. So thank you again, Angela. Great to have you today. Announcer: You’ve been listening to the AoD Disability Employment Technical Assistance Center podcast. Today we spoke with Angela Greene, founding member and secretary of Impact South Carolina. To learn more about Impact South Carolina, visit impactinsc.com. For Angela’s presentation during the DETAC webinar, “Employment First 2.0: Developing a Foundation for Excelling Systems Change Efforts through Legislative Action”, visit aoddisabilityemploymenttacenter.com and click on the “Events” menu. The AoD Disability Employment Technical Assistance Center (or DETAC) is a project of the Lewin Group and TASH, created by a grant from the Administration for Community Living, to provide evidence-based training and technical assistance to Administration on Disabilities grantees aimed at improving competitive, integrated employment and economic outcomes for individuals with disabilities across the nation. Music for the DETAC podcast is an original composition and performance by Sunny Cefaratti, the Co-Director and Autistic Self Advocacy Mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org. To learn more about DETAC, visit aoddisabilityemploymenttacenter.com. For news and alerts about upcoming webinars and podcasts, you can sign up to receive our newsletter or follow us on Facebook and twitter. This transcript has been lightly edited for clarity.

10. 

    26 Jul 2021

    From the Sheltered Workshop to Musical Mentor: A Conversation with Sunny Cefaratti

    About This Episode Following last month’s webinar, “Celebrating Olmstead: It’s Time for 14(c) Phase-Out: Lessons Learned from Advancing Legislation & Leaving the Shop”, we go deeper with one of the webinar presenters, Sunny Cefaratti, about her early post-high school experience of going to work in a sheltered workshop, how she asserted her desire to leave the sheltered workshop, and how she built an independent life of music as the co-founder and Autistic Self Advocacy Mentor at the Musical Autist. Presenters Sunny Cefaratti is the Co-Director and Autistic Self Advocate Mentor at The Musical Autist. Sunny is a performing pianist and vocalist, and mentor to other autistic self advocates. She is an essential part of the organization and on the Board of Directors. She was born in South Korea, completely blind, and was adopted by her family in the United States at two years of age. She was diagnosed with autism in 2001. She is a graduate of Maryland School for the Blind. Amy M. Gonzalez, M.S. is the Project Manager for the Disability Employment TA Center (DETAC), funded by the Administration on Disabilities. In this role, she manages the various components of the DETAC, including training and technical assistance to grantees who are Centers for Independent Living, Councils on Developmental Disabilities, Protection & Advocacy Entities, University Centers for Excellence in Developmental Disabilities, Education & Research, Traumatic Brain Injury Programs and Projects of National Significance. Prior to her role at DETAC, Amy was a Senior Policy Advisor on the Workforce Systems Policy Team at the U.S. DOL, Office of Disability Employment Policy. She formerly served as the State Director of Employment & Day Services for the Tennessee Department of Intellectual & Developmental Disabilities. Amy started her career in direct service and has a broad range of experience in serving individuals with disabilities through the following systems: Education, Vocational Rehabilitation, Workforce Development, Medicaid, including employer outreach and engagement. She also strives to elevate important systems issues that continue to be overlooked such as marginalized and underserved communities. Transcript Announcer: You’re listening to the AOD Disability Employment Technical Assistance Center (DETAC) podcast, where we learn from people who are working to improve competitive, integrated employment and economic outcomes for people with disabilities. In today’s episode, we talk with Sunny Cefaratti, the co-director and Autistic Self-Advocacy Mentor at The Musical Autist about her experience being put into a sheltered workshop, quitting and creating an independent economic life for herself. [music plays] Amy Gonzalez: Hi, good morning, Sunny. Welcome to the Disability Employment Technical Assistance Center podcast. We are really excited to talk with you today. This podcast is going to focus on similar content to what was discussed in the June national community of practice webinar, which is taking a deeper dive into learning, Sunny, about your experience with leaving the sheltered workshop and obtaining a meaningful job, an integrated job in the community, that gives you value and purpose. And so I’m going to start off with asking you, Sunny, if you could please introduce yourself and just tell us a little bit more about yourself and what you do for work. Sunny Cefaratti: Well, good morning, everyone. I’m so glad that I can be here on this podcast today. My name is Sunny Cefaratti. I am co-founder of The Musical Autist, which is a non-profit organization that promotes sensory friendly concerts and empowerment jam sessions and musical autist truth for autistic individuals. I am totally blind and I am on the autism spectrum. Currently I am getting my certificate in entrepreneurship. I take classes at Anne Arundel Community College in Maryland, and I am a self-directed services participant, which I can go into more detail about that later. But that’s basically who I am. I am 35 years old. I’m quite busy, you know, now that the pandemic is finally ending. I am getting out more and doing more stuff in the community. Amy Gonzalez: Excellent. Thank you so much, Sunny, for that wonderful introduction about yourself and some of the wonderful work that you are doing. The next question that I’m going to ask is going to focus on your experience, your youth experience and transition at your school. Sunny, when you were in high school, did anyone ever talk to you about what you wanted to do for work post-high school? Sunny Cefaratti: Unfortunately, I did not have that choice. I graduated from the Maryland School for the Blind in 2007 with a certificate of completion. And I was placed in a sheltered workshop upon graduating from Maryland School for the Blind. And I remained there for eight years. Nobody told me, you know, self-direction, wasn’t even an option for me in 2007. And I’ll go into details in a little while as to my experiences at the sheltered workshop, but unfortunately I did not have the choice. I was just placed there because of a broken educational system. Amy Gonzalez: Thank you for sharing that, Sunny. So just to kind of recap what we’ve talked about or what you just mentioned, you were not provided with any opportunities in high school to learn more about your interests in the world of work, you were not provided really a voice or a choice in being able to decide on your post-high school outcomes, but rather instead, you were pretty much just informed that the only opportunity for you was out of sheltered work. And because of that, you ended up staying at a sheltered workshop for about eight years. So I want to talk more about that, Sunny. I want to take a deeper dive about your experience in a sheltered workshop. Can you tell us a little bit – so you were forced to go there, you were in this shop: what type of work were they giving you and what was that environment like, Sunny? Sunny Cefaratti: Well, for starters, you know, I was given piece work. I was paid sub-minimum wage. I would say really the only positive experience I had in the shelter workshop was that I played and sang in a handbell choir. For those of you who might not know, I play the piano and I sing. And I guess the other positive experience that I had was I would volunteer at a local nursing home twice a week, playing the piano for the residents. But the shelter workshop had more negative experiences than positive experiences. When I first arrived in the sheltered workshop, you know, there was a young lady who was – and I did not talk about this at the webinar, but it’s a good thing that I’m taking a deeper dive – but was a young lady who had significant behavioral issues and I was the person mostly that she would target. I mean, I’m using an iPhone for this call right now. And if I had this iPhone in 2007, it would have been broken. This individual – part of her behavior issue was that she would destroy people’s belongings. And so a lot of times my belongings would get broken. Also the sheltered workshop did not allow me to walk around the facility independently because they did not want to be liable in case I got hurt if somebody was having a challenging behavior. In the shelter workshop, I did not set my own goals. I was not allowed to decide where to go, what to do, who to work with. I was just assigned with whomever. And there were – and I’ve seen very unprofessional behavior from the staff. There were days when I sat around in the shelter workshop, waiting for work to come. Some of the piece work I’ve done was counting flyers, assembling products. People would, you know, when there was no work, people would do puzzles, they’d color pictures, they’d watch movies all day. You know, we would take classes on how to keep a job, but you know, this sheltered workshop didn’t really have people working in the community in mind. There were people with really high levels of need that were aggressive toward me. I’ve gotten punched by clients. I’ve gotten hit by clients. I’ve gotten my stuff broken by clients. I’ve gotten hurt by clients and laughed at what I have gotten hurt by clients. It’s just, I mean, yes, I’m being a little graphic here, but this is the environment for a person that is placed in a sheltered workshop who does not need to be there. Also, you know, like I said, the last paycheck I got there when I left in March of 2015 was $2 and some change for two weeks of work. That’s how much money I got it. It was awful. So I left the shelter workshop in 2015 because of an incident that occurred, which I really don’t want to talk about on this recording because it’s kind of gross, but that was the last thing that happened before my mother decided, okay, you are finished in this environment. This is not the best place for you. And my parents realize, you know, now that having me placed in the sheltered workshop was a huge mistake. But in high school, you know, in Maryland School for the Blind and in schools like it, this is where students go. And a lot of times the families decide, the educators decide. And this sheltered workshop claimed – and sheltered workshops like the place that I was in claim – that they’re going to help their clients find a job. Well, this shelter workshop did not help me find a job – quite the opposite, actually. And so that’s basically how I was treated. Again, I did not decide my goals. I did not decide where I went, what I did. I was at the mercy of someone else. And the sheltered workshop was a place where I did not need to be. And people that are like me, who are perfectly capable of working in the community, do not need to be in this environment. Amy Gonzalez: Thank you, Sonny, for sharing those very intimate, important details that I think is important for people to understand the true environment within a sheltered workshop and what persons supported are subjected to within the settings. Sunny, I want to ask you, you mentioned that, you know, you were pretty much forced to go. You really weren’t given a choice or a voice in deciding your next option after high school. When you did approach staff about transitioning out of the sheltered workshop, what, what did they say? Did they even have a discussion with you? Or was it just so quickly dismissed that you couldn’t even talk about it? Sunny Cefaratti: It was basically dismissed, you know, I didn’t even think to approach staff about it. You know, I thought that this was going to be where I was going to remain for the rest of my life. But thanks to my support broker who works with me in self-direction – she is the person that really helped me get out of there. I met her in 2011 when The Musical Autist started. And, you know, she talked to my mother about getting out of the sheltered workshop. And my mother said to this person, she was like, you may pursue self direction as long as you are the one in charge of it. And it was then that, you know – the turning point was I met the co-founder of The Musical Autist. And I’ll talk about The Musical Autist at the end, but she was really a big part of my life. You know, she – I distinctly remember one time I was talking with her on the phone at the sheltered workshop and my support broker said to me – well, she’s my support broker now, but she wasn’t when I was in the shelter workshop – she said, Sunny, you seem to be content in the sheltered workshop. And I didn’t know what to say back then, but looking back in hindsight, if I was still in the sheltered workshop today, and somebody were to say to me, Sunny, you seem to be content in the sheltered workshop, my response would be: I have no choice, but to be content in the sheltered workshop; that’s just the way it is, okay. If you want to help me get out of here, you are free to do so, but I had no choice, but to be content in the sheltered workshop. And that’s, that’s the thing about people who are placed there. If someone were to say to you, you seem to be content in the sheltered workshop, our response would be, you know, what am I supposed to do? You know, it wasn’t my choice to come here. Okay. It wasn’t my choice. So I have no other choice, but to be content. Like, what am I supposed to do? Amy Gonzalez: Yeah. Thank you for sharing that just really important part of your journey, Sunny. And I want to ask or just take a deeper dive about choice. So many people across the country – right? – this is a huge debate, this sheltered work environment. And so many individuals state that, you know, choice should be a big part of walking individuals with disabilities through their decision in staying or leaving this shop. And I want to ask you, Sunny, how support staff in the field could be helpful in informing a person’s real choice? How can we help educate an individual that’s been in a sheltered workshop for so long and helped them understand that there’s more out there, that there are more options out there than sheltered work. Sunny Cefaratti: It first starts with presuming competence in the individual. You know, when I was at Maryland School for the Blind, I was presumed incompetent. The transition staff really believed that the sheltered workshop is where I need to be. I think the first thing that needs to happen is there needs to be a real fix in the system. There needs to be a real change in the educational system. Special educators need to realize that just because somebody has a disability does not mean that they don’t have potential and that they don’t have anything to contribute to this world. The system needs to be fixed. And I will say that over and over and over again, until I see something happen. And something is happening because sheltered workshops are being phased out, because 14(C) is being phased out, as we just celebrated at the Olmstead webinar last month. Things are changing, but I think there needs to be more work. There’s more work that needs to be done. Special educators and VR counselors need to be educated that the system is currently broken right now. People with disabilities who have a low level of support, who are perfectly capable of being in the sheltered workshop, that conversation needs to be started rather than forcing the person who is perfectly capable of working in the community to go into a sheltered workshop. You should talk directly to the person. Questions that I recommend you ask is: what do you want to do when you graduate from high school? Not: okay, you’re graduating from high school: this is where you’re going to go. Ask questions like: what are your interests? What things do you like to do? What goals do you have for your life beyond high school? Do you want to go to college? Do you want to get a job? You know, what is, what is your dream job? What do you want to do with your life? And it doesn’t matter how significant your disability is, if you are able to communicate – and I think communication should be taught, especially for those who cannot speak, typing to communicate, you know, just because somebody cannot speak doesn’t mean they don’t have something to say. So asking those questions: what do you want to do with your life? What are you, what do you see yourself doing in five years? Not: okay, you’re graduating from my special school: this is where you are going to go. Amy Gonzalez: Completely agree with that, Sunny. I really appreciate the deeper dive into systems change and challenging our colleagues in vocational rehabilitation, in the education system to really take these points into consideration when service planning and supporting individuals to transition, you know, into post-secondary outcomes. Sunny, I want to transition over into your new life outside of the sheltered workshop. You talked about that you are a co-founder. Let’s hear about your new life. Now you’re out of the sheltered workshop. You talked about the introduction to self-directed services. So we want to hear a little bit more about that – how drastically your life has changed as a result of being out of the sheltered workshop and really having a voice and a choice in the services that you are provided. Sunny Cefaratti: So, as I said, I left the shelter workshop in 2015 and I started self-direction in 2016. And I’ve been in self-direction for five years. My life is so much better. As I am recording this podcast right now, I am making money. And this year has been a year of blossoming for me in particular coming out of the pandemic, because I’m speaking – I’m doing different speaking engagements and I’m getting paid. I didn’t have this opportunity in the sheltered workshop. As co-founder of The Musical Autist, I’m doing more things for The Musical Autist. You know, I am going to a lot more board meetings. I am performing. Well, I did not perform at all last year because of COVID. But my life is so much better. I hire my own staff now I decide where to go, what to do. I set my own goals. Here in self-direction, we don’t call the plan, the IP anymore. I stopped calling that. I call it now a PCP, which stands for person-centered plan. So in self-direction I’m deciding. I am the person. I am the team leader. I am deciding what to do, where to go, what my schedule is, regardless of what anyone else says. I am the person who is deciding what to do with my services. And that’s great. That’s awesome. And that’s how people with disabilities should be living their lives. They should be having autonomy as to where they want to go, what they want to do. As co-founder of The Musical Autist, you know, I might be promoted to executive director because my co-founder is thinking about stepping away from leadership of the organization, because she wants the organization to be autistic led. In fact, I’m going to be seeing her after I’m done with this podcast, because I’m going to have another Zoom meeting with a couple of people that work with us. So co-founder of The Musical Autist, you know, I perform in sensory-friendly concerts. I am the leader of the jam session committee, which is a laid back social event where people with and without disabilities can come and make music together. And then the third program is Musical Autist Troop, you know, where when we met in person, we met at Maryland Hall, which is in Annapolis, Maryland, and we would practice songs for performing at a sensory friendly-concert. A sensory-friendly concert is a concert that is accessible to people on the spectrum who may not be able to sit still in typical concert venues. I would encourage anybody who is listening to this podcast to check out our website, TheMusicalAutist.org. That’s spelled T H E M U S I C A L A U T I S T dot org. And Amy, I guess if there’s show notes for this podcast, you can put the link in the show notes. I just spelled out TheMusicalAutist.org if you want more information about our programs. Amy Gonzalez: Excellent. Thank you so much for that, Sunny. And as we wrap up, the final questions that I have for you is this: Sunny, what type of advice or recommendations would you have for a person with a disability that is in a sheltered workshop and is fighting? It is fighting to get their way out and have a voice. What recommendations would you have? What can they do to really push and make their voice heard? Sunny Cefaratti: My advice is: get out! Get out of that environment. You do whatever you need to do to get out of there. I would say: talk to your staff person, talk to your support person and use language like: this is not the best place for me; I don’t want to be here anymore; Get me out of here. Now, watch: this is something that I’m passionate about, and yes, I’m going to raise my voice a little because I had the choice. You tell your staff person: why did you put me here? Why do I have to continue to live my life in this environment; when I am perfectly capable of working in the community. I don’t need to be in this sheltered environment. Get me out of here. And you helped me get me out of here. And if you’re not going to help me get me out of here, I’ll do it myself. Cause I’ll tell you, you know, people need to empower people with disabilities. You don’t have to be in this environment. You don’t have to stay here. You don’t have to be content here. And never take no for an answer. If people tell you, this is where you have to be, because this is the best place for you. You fight your way out because you have a better life to live. And consider a self-directed program. You know, whatever state you are in and whatever state has, whatever version of self-direction program, weigh your options. And not only do I serve on The Musical Autist board, I also serve on two other disability advocacy organizations: the Maryland Developmental Disabilities Council and the Self-Directed Advocacy Network of Maryland and the Self-Directed Advocacy Network of Maryland fights for individuals like me, who self-direct and who may have issues with, with self-direction. But I just want to say, you know, as I said, previously, the system needs to be fixed. The system needs to be changed. And for those of you with a disability who are in the sheltered workshop, and especially those of you who are capable of working in the community, you do whatever you need to do to get out of there. Amy Gonzalez: Great Sunny. And just a follow-up question: I think that is so important is family members. There are some family members that are reluctant to support their son or daughter with a disability to transition out of sheltered work. And what tips do you have for family members, Sunny, who are on the fence and just scared maybe in helping their son or daughter transition out of sheltered work. What type of tips do you have for family members? What kind of reassurance can we give family members? Sunny Cefaratti: I think family members need to be educated and family members need to look at the options. You see, the reason why a lot of family members think that it is the best thing for their son or daughter to go into a sheltered workshop is because they need somewhere for their child to go while they go to work. And that is such a skewed opinion. If your son or daughter is capable of being independent, is capable of working in the community, family members and educators alike need to be informed of the options. They need to consider other options. You know, don’t – here’s the issue with our system – the sheltered workshop environment is the default environment, because that’s how broken our system is. And my advice to family members and educators alike is this: do not default to go into the sheltered workshop. Because the shelter workshop is not the only option, especially for people who are more than capable of working in the community and being active members in the community. The sheltered workshop should never, ever be the default place where your son or daughter or your graduating student goes. Look at the options, weigh your options, explore other options, assess the person’s needs. Ask the questions that I asked before. What do you want to do with your life? What do you want to do after you graduate high school? When you transition to adulthood, what is your dream job? But again, it starts with a change in the system. It starts by fixing the educational system. It starts by fixing the transition to youth system. That’s where it starts. And it also starts with presuming competence in the individual that you’re working with. Amy Gonzalez: Right on Sunny. Thank you so much for being with us here today and sharing your experience. As we wrap up, I just want to ask if you have any final thoughts to share with our audience today, about your experience and about this national movement to end 14(C) and sub minimum wage across the country. Sunny Cefaratti: Well, my closing thoughts would be kind of redundant because I basically said, you know, everything I needed to say, but my hope for the future is that nationally all sheltered workshops would be phased out. I’m looking for the day when there is absolutely no more sheltered workshops in the United States of America. I’m looking forward for the day when all sheltered workshop facilities will be closed. And everybody will be able to work in competitive employment. People with disabilities will be treated equally. I’m looking forward to the day when society will be accommodating towards people with disabilities, where there are no wash sheltered workshops, where there’s no more 14(C) and everybody is treated equally and everybody will have something to contribute to this world regardless of their abilities. Amy Gonzalez: Thank you so much, Sunny. We at the Disability Employment Technical Assistance Center agree and share your vision and your hope. And we just want to thank you again so much for being with us here today. And we look forward to further engaging with you through the Technical Assistance Center. So thank you so much, Sunny. Sunny Cefaratti: Thank you. Announcer: You’ve been listening to the AOD Disability Employment Technical Assistance Center podcast. Today we spoke with Sunny Cefaratti, the Co-Director and Autistic Self-Advocacy Mentor at The Musical Autist. The AOD Disability Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group and TASH, created by a grant from the Administration on Community Living to provide evidence-based training and technical assistance to Administration on Disabilities grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AODDisabilityEmploymentTACenter.com. For news and alerts about upcoming webinars and podcasts, you can follow us on Facebook and Twitter. Music for the DETAC podcast is an original composition and performance by Sunny Cefaratti. You can learn more about The Musical Autist at www.themusicalautist.org. We’ll have another episode on competitive integrated employment for you in the near future. [music plays] This discussion was originally recorded on July 2, 2021. This audio recording and transcript has been lightly edited for content and clarity.

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