MENGENAI EPISOD INI
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.
PresentersSunny 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.
TranscriptAnnouncer: 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.
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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.
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This discussion was originally recorded on July 2, 2021.
This audio recording and transcript has been lightly edited for content and clarity.
