Autism Spectrum Disorders Advisory Board Meeting April 2023

001If you have a tissue, so this can be a. Thank you. Yeah, thank you, man. I can't hear me. Yes, I get hello. How are you? Awesome. Good. How are you? Good. I'm just getting everything ready. I'm in a company order. Thank you. Oh, yeah, take your time. We have a little over 20 minutes. Probably going to go off video and mute for a little bit. You feel free to do the same, but you are all set there and as a panelist, so we're all set up. For you on the meeting, so let me just lock the door real quick. Whenever you need. Okay, can you go down? Josh is doing a test right now. What? Nothing all good. I was just testing our closed captioning, which looks like it's working. All right, thanks. So,

002with the subcommittee, like, I want to be, I want this to be the most successful subcommittee. So, like, I want us to be able to hit our objective. Um. Time efficiently, so, like, can I have, like, multiple meetings per week if that's. So, it's going to be up to who's on the subcommittee with you and their ability and availability. I think you can work that out with them today. It's going to be I'm just going to go on the background of the resolution. Share that you've been working on stuff since the last meeting, push to a slide with a couple of photos that you sent me, give it to you. You can talk for as long as you'd like probably 510 minutes max please on like, what you've been doing. And then the next slide

003is when I actually show the resolution and talk about the subcommittee. Um, so at that point. Can the attendees hear us right now? Yeah, but. Let me hold on everyone who's a participant. My name is Alexia Holden. I assist with the board. We're just going to give it another 5 minutes or so for board members to join and then we'll begin the meeting. Thanks for holding out for today's meeting. We're offering closed captioning to access the closed captioning. You want to look in the bottom left hand corner of your screen, and you should see a little bubble with the CC icon. If you click on that, you should be able to select the language that is most comfortable for you to use for closed captioning. And I will just switch the slide to the agenda

004and pass it over to our chair. Great well, thank you. Alexia. Thank you. Everybody for being here on what I think is a beautiful Friday across New York state. And we are very sorry as Alexia announced for those who were had joined us by by this point. That we did have to modify the agenda. Mike had. A call to service for fortunately, I believe a wildfire. So obviously that takes precedent. So we will have him present at a future meeting, but great to great to see all of you. I know that we had wanted to meet in person, but there are a lot of conflicts with physical room bookings and availability. So, we ended up doing this by zoom, but it would be good to get together in person again sometime soon. Because that was

005really nice. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. And we have a newly appointed board member, Sean hines and shawn is an appointee by of the minority leader of the Senate and Sean welcome. We'd love to hear a few words from you a little bit about yourself and your background if if you're okay with that. Oh, sure. Um, so, um, so I was actually appointed by the minority leader in the assembly. Um, but, um. A little bit about me, um, I'm on the autism spectrum. Um. I graduated high school on Long Island, 2009. Currently, I actually work for Doug Smith, who is one of our assemblymen. I'm his

006district director. So I do a little bit of the district stuff, a little bit of the legislative stuff. I do, I guess, check of all trades, if you will. And I'm a self-advocate, and I've gone around in my community. I've talked about my experience growing up, you know, being on the spectrum and, you know, sharing my story and trying to advocate for those in the community that can't advocate for themselves. And I'm very honored that Leader Barkley in the assembly, you know, pointed me to this board. And just I'm looking forward to meeting everybody and working with everybody. This is a great honor. Thank you. Well, yes, congratulations, and thank you for joining us today. We really appreciate it. So you can see the agenda there on your screen. We're going to start with a

007presentation from Dr. Herrera-Murr, and I hope I'm saying that correctly. Alexa, you can correct me if I'm wrong. And then we'll have to skip the second part. But we thought it would be an appropriate time to have a legislative update from Alexia to hear what's going on. And then we're circling back around. We had had great presentations at our last meeting on the neurodiversity flag, and we thought it would be appropriate to have a resolution around moving that forward. And then time for open board discussion on other issues that we want to be looking at going forward. So with that, I would love to introduce Dr. Herrera-Murr. And who serves as the chief diversity officer and director of OPWDD's executive office of diversity, equity and inclusion. As the chief diversity officer, she works to advance

008the policies and practices of DEI and cultural and linguistic competencies to all components of the OPWDD system of supports for people with developmental disabilities and their families. The doctor will be discussing the creation of the DEI office of diversity and inclusion. Thank you. And she's the chief diversity officer for the BLM. And that will be of interest to us at OPWDD, her role and the work that the staff are engaging in and planning for the future. So please make sure, if you have questions, that you save them until the end. But welcome. We look forward to your presentation, doctor. DR. HERRAERA- Thank you. Can everyone hear me okay? MR. IAN MAURERA- Yes. DR. HERRAERA- Great. So my name is actually pronounced here on Mir, like Meerkat. DR. IAN MAURERA- Oh, great. DR. HERRAERA- IAN MAURERA-

009No problem. I actually presented to the autism community. I'm Dr. Herraera-Murr from the voisio. the Autism Spectrum Disorders Board a few years ago. So, I am going to leave that mystery there and kind of have you guessing on what I presented about, but I will reveal it in a few slides. And at that time, I was an intern at OPWDD, and now I am the Chief Diversity Officer and the Director of the Executive Office of Diversity, Equity, and Inclusion at OPWDD. And so, I just kind of want to start a conversation about community partnerships, what has laid the foundation of our DEI office, what we have learned over the past few years, how we are kind of continuing to cultivate those relationships with our community partners, and our intention to work towards systems change in

010diversity, equity, and inclusion. And so, there is probably going to be a lot of information, and I think if you have any questions, you know, I can stick around to answer those questions, but anything in writing, I will work with Alexia and others, Courtney, to answer your questions. But I am really excited. Alexia Morgan- Thank you, Courtney. Thank you, Courtney. Thank you, Courtney. Thank you, Courtney. Thank you, Courtney. Thank you, Courtney. Thank you, Courtney. So, if you will go on to the next slide. Our Executive Office of DEI was actually officially created last year in August. So, we are a young office, only seven or eight months old. At that same time, our agency appointed our first full-time Chief Diversity Officer. That is me. But the work of diversity, equity, inclusion and cultural and linguistic

011competence predates the design and the formalization of this executive office. We started really learning about communities' cultural and linguistic needs back in 2017, and that's what I presented to the board about years ago. So, I'm going to provide a bit of an update where we are now with what we've learned and how we're actually implementing and paving the way forward based on what we've learned from our communities. Right now in New York State, we have several really successful community-based pilot programs, New York State laws, executive orders. And in our OPWDD strategic plan, we've also very clearly articulated an intention to continue working with cultural and linguistic minority communities. And so, I'm just going to be talking to you about those intentions and how we can continue to partner, the DEI Office can partner with this

012board to really create a vision and . . . . . for diversity, equity, and inclusion. And so next slide. So in 2017, OPWDD actually joined with the Developmental Disabilities Planning Council, the DDPC, in what was called the New York State Community of Practice on Cultural Linguistic Confidence in Developmental Disabilities. So we partnered with the DDPC, our three university centers for excellence in DD in New York State, Disability Rights New York, and we decided to focus on two language communities, Spanish and Mandarin, which are the top spoken languages in New York State after English. And so we worked with specific providers who serve communities with DD who speak Spanish, Mandarin, and Cantonese, and really try to learn from them what are the nuanced barriers that you're experiencing, and what is it like to be a

013family or a person with the living or the lived experience of a developmental disability who also exists at the intersection of other, you know, and really is experiencing that intersection of trying to navigate multiple services through multiple identities. And so we hosted a number of community forums, listening sessions, and focus groups to really understand and hear from families about their experiences. What is it like to access mental health services and DD services? And what are the barriers that you're experiencing? And so this was an excellent partnership that still exists today. It was through a five-year grant from Georgetown University, and the community has sustained itself and grown to include the Self Advocacy Association for New York State, other state agencies, other nonprofit service providers. And on this screen, you'll see pictures of, from, you know,

014an actual community forum, and then how the Chinese American community, then, has heard that information in their respective communities and their languages to really raise awareness about DD services so that families could be educated on OPWD services. So next slide, please. And so after the five-year engagement of doing focus groups and, you know, community work and really listening, the entities that I mentioned, DDPC, OPW, RUFED, published a community needs assessment. And so there were two, you know, community groups, and there were two really kind of lessons learned that I want to emphasize. And these lessons are what are really forming the foundation of our DEI office. And one lesson was that people deserve to be counted, and people deserve to see themselves, you know, in OPWDD data systems and in state data systems. And there

015is a challenge where, you know, it has been challenging to find data at the intersection of disability, race, ethnicity, language, and identity categories. And so that was a lesson that we learned, you know, years ago. And so now under the current, you know, administration, we have several legislative mandates to start reporting and sharing data on people who have these identities across New York State. And so next slide. Another really important lesson that we learned through our community engagement was that communities are able to determine their own needs. They don't need, you know, external experts coming in, and assessing their needs. And so in order to really learn about the needs of people who, you know, who exist at these intersections, we really need to engage with them directly and build those relationships. And so those

016are two kind of key lessons that we learned with our DDPC, our university partners, our service providers, SANEs, and many other advocacy groups over the last few years. And so that's kind of like the history of the work that we were engaged in. And how that work has now brought us to a formal DEI office. And so next slide, please. And so while listening, you know, to communities, especially those who experience language access barriers, we received in writing, you know, formally, what can OPWDD do better? How can we make our website, how can we make our informational sessions, how can we just make, how can we just increase access to OPWDD supports and services? And so I'm gonna make these slides available to you so that you can read them. But essentially we received a

017number of formal recommendations and the DEI professionals at OPWDD in partnership with other agencies and community-based organizations are actively working on these recommendations. You know, one very specific recommendation was, you know, we want to be able to see ourselves in your materials on your website. And so thinking, you know, if we only show adults with disabilities, we want to see children with disabilities. We want to see Asian Americans with disabilities, and we want to see a more inclusive representation of people with disabilities overall. So that is, you know, a recommendation that we received through the work that we've done for the last few years and are actively working to provide that representation. In addition, there's an active investment to produce information in plain language, so that everyone can understand it, and then also be able

018to be translated into a number of other languages. So this is just an example of how we were able to do work in partnership with communities who are, who we often don't think about when we think of disability itself and the recommendations that they provided and how we're actively working across the system to respond to those recommendations. So next slide, please. Additionally, you all probably know that there's been several executive orders related to language access in New York State. And last year, the governor codified the New York State Language Access Law, which mandates that all state agencies must translate vital documents and important materials in the top 12 spoken languages. But on this slide, on the left-hand side, I have the top 12 spoken languages in New York State, and on the right-hand side, I

019have the top 12 spoken languages requested of OPWDD. And I just wanted to emphasize that even with statewide data available, we're finding a lot of diversity within the population that's receiving or trying to receive OPWDD services and just trying to understand what those language needs are by region and by office and by agency. And so we're getting a request for not just the top 12, but beyond the top 12 New York State languages. Additionally, understanding that, you know, sometimes when we think about language, we only think about spoken language, but as many of you know, just trying to emphasize that there is a great representation and a need for just understanding that there are languages that are not spoken and that a huge percent of the population that we serve or want to serve actually

020does not have a spoken language and making greater investments in American Sign Language, Pidgin Language, just other representation overall. And so this is just some of the enhanced understanding that we're getting when we look at data, but we also listen and document the needs of our community. And I say, next slide, please. And so just wanting to emphasize that, kind of what are we doing and how have we acted on those recommendations? You know, it was years of work that was really facilitated by the DDPC, and we've been in partnership with OPWDD, you know, that's years of data, a needs assessment focused through research. And so what have we done? OPWDD, with the creation of the DEI office, one of the first things that we asked for was to hire a full-time language access coordinator.

021OPWDD is now perhaps just one of two agencies, the other being OGS, the Office of General Services, being one of the few agencies that have a full-time person dedicated to providing language access. And so with the creation of the DEI office in August, the first thing that we, one of the first things we did was hire a full-time language access coordinator who could really enhance our language access plan, continue learning about language access needs, and again, that's spoken and non-spoken. And just to give you a sense of just this position and how we really, you know, just wanted to have a position that would really be reflective of the best practices that we've learned, the position itself was modeled off of existing language access coordinators, just to give a shout out, Dr. Jackie Hayes who

022is the language access coordinator for the DDPC, Dr. Laura Gonzalez-Murphy who is the language access coordinator for the Office for New Americans. Jenny Nunez and Cynthia Skewart who also provide language access services. And so when we wrote the position, we then shared the position our community of practice on cultural linguistic competence and in that position built in the recommendations that we received so that the language access coordinator and the language access team would actively work to implement those recommendations. So next slide please. And then I'm just kind of setting, you know, as you start to make, you know, investments in language access and really, you know, learning, there's just a lot there's just a lot to enhance. And so we have a lot of plans to really enhance language access across OPWDD services and programs,

023working to have self-direction and front-door trainings and info sessions in other languages, really working with our translators and interpreters to produce better quality interpretation and translation, updating our language access access policies and procedures, and just really setting a good example for others to follow. But working with our liaisons across the state and other service providers to really implement best practices for cultural and linguistic competence. So, those are, that's just one example of just how we've been able to start making those investments for language access. And, you know, language access often comes up as the biggest barrier that many immigrant communities are facing, many new American communities, but families with disabilities as well, especially if you're talking about, especially if we're discussing the sign language and nonspoken languages. Language access seems to be a huge barrier

024based on the research and the partnerships that we've had. Next slide, please. And so, earlier I mentioned that language access is a huge barrier. And so, earlier I mentioned, you know, one of the things that we learned in our community of practice was just the need for data at the intersection of developmental disability and race as one example. So, that is an investment, you know, to capture, to collect that information and to share that information publicly is an investment that OPWDD has made. And so, the information that you see on your screen is actually available on the OPWDD website. And so, you can see that in our Medicaid data, Medicaid data book. And I think that data book includes over, you know, 80 pages, maybe. I think it's 147 pages of data. And so, this

025is just one table that shows you, based on racial category, people with disabilities and the racial ethnic breakdown. And so, here I just wanted to emphasize people with, people who are utilizing Medicaid services and then the New York State population. And again, this is a public health data. So, I'm going to go ahead and share that. But if you want to go to the website, you can go to the website. And I will share publicly available data on our website. And part of it is also from the Census data book. And so, you can see on your screen, you know, one of the rows where you see, you know, people who speak Spanish, so the Hispanic-speaking population. Out of the total OPWDD Medicaid services, 7 percent of people who are receiving OPWDD Medicaid services identify

026as Hispanic or Spanish speaking. But in New York State, that's actually 5 percent. actually 19% of the New York State population. And so there is an under-representation there and it really makes you think about, well, what are the communities, who are the communities that we aren't serving? And additionally, when you look at the racial category for people who identify as white, you'll see that there is an over-representation within the OPWDD, Medicaid services population. And so just really thinking about what can we do further, set goals for diversity, equity and inclusion within the service population for OPWDD. So next slide, please. And then again, based on this data, based on taking a demographic look at OPWDD, but also New York State, what can agencies do and service providers do to partner and really serve those communities

027who experience developmental disability, and live a life with developmental disability, but also experience additional barriers to services? And so one really incredible pilot is the Ramirez June Initiative through the Office for New Americans. And so OPWDD is a strategic partner in this initiative. It's a pilot program that currently exists. The name Ramirez June comes from the Ramirez family, which is a family who came to the United States from Mexico. And so they have a brother with a developmental disability who is really seen as a role model in the community. And so the Ramirez family spoke to us about trying to access services and helped to kind of design this pilot. At the same time, June Lum, who was originally from Malaysia, waited years, to access disability services for her son who has autism. And so

028this pilot is really named after and based on navigating the nuanced needs of the family to our new Americans and are experiencing those nuanced barriers. And so in this pilot, the Office for New Americans, ONA, and OPWDD staff work together to help families overcome these barriers. And just to give you an example, when you're going through the assessment process, and you're required to provide documentation, if you are a refugee from another country, and you don't have that documentation, how can we help you navigate services? So there's a number of nuanced barriers that you don't really know unless you've actually experienced them. And so this is just one example of a pilot that is actually serving these communities. And overall, the goal is to expand access. That's the goal. And so we're really looking at how

029we can help families to make sure that families have two culturally and linguistically responsive service providers overall. And so next slide. I think I got one back. So again, I think I've already emphasized the importance of community conversation and really listening for families and communities. And so just kind of saying that that's work that we're hoping to continue to do. We've had several community conversations over the last few years, the Office of Mental Health, our care coordination organizations, service providers, and just a lot of different professionals coming together to truly understand what families are experiencing and just discussing how we can work together to provide access to services. Just kind of interesting fact that across New York State, I think there are approximately 11 refugee resettlement areas. And so many families coming to New York

030State, they're not living in the area. And so when you enter a refugee resettlement area, you often end up living and contributing to the economy and really living in that area. And so working with families who are coming to this country, who have developmental disabilities and just helping them navigate and access those services. It's just New York State is a huge kind of hub for refugees. Utica, for example, is a refugee resettlement area. And so sometimes people, I think people don't understand that it's actually all across New York State that these conversations are needed and things like that. So next slide. And so that was just, I think, a demonstration of the importance of listening to communities, truly partnering with them, and then how we're trying to actively respond and implement pilots and interventions and

031really dedicate resources to serving people with disabilities and their families and providing access to services. But internally at OPWDD, we're really making an investment to understand diversity, equity, and inclusion, and to build our own knowledge and expertise in that area. We're hoping to study and implement cultural and linguistic competence best practices, and just understanding that diversity, equity, and inclusion, it's not just an acronym, but each thing means something different. And trying to develop a vision plan and an action plan throughout the agency. So next slide, please. With that being said, our largest project right now through the American Rescue Plan Act is an investment in enhancing OPWDD as a systems responsiveness to people's cultural and linguistic needs. And so through this partnership, which is with the Georgetown University National Center for Cultural Competence, we're going

032to be developing an agency action plan for diversity, equity, and inclusion. We will be providing resources to our service providers and really partnering with them to support people's cultural and linguistic needs. Again, including, you know, ease for resources in your language, whether it's spoken, non-spoken, and then continuing to have community conversations and listening sessions where everyone will be invited, and we're really excited to be invited to those conversations so that we can truly understand what our people, what our families needs for diversity, equity, and inclusion. What are your cultural needs and your linguistic needs? And so there's a lot of opportunity, so I hope to stay involved and share with you, you know, when those listening sessions come up and the opportunity for everyone to really engage in that conversation and make sure that your

033needs are documented and represented. And so we can work together to really meet those needs. And so I think that's one of our largest kind of investments at OPWDD. Next slide. And again, with that investment, just wanting to share kind of where we are right now. In November of last year, the OPWDD leadership team participated in a visioning session to start creating an action plan for diversity, equity, and inclusion. Next week, we will be starting a professional development series where we will go through 14 terms, understanding what does diversity mean? What does equity mean? What is inclusion? What is cultural competence? You know, disability justice, linguistic competence, intersectionality. So really just trying to understand, you know, in our modern day, what is the latest terminology and what does this really mean for developmental disabilities? I

034mentioned that we've hired a full-time language access coordinator. We've also hired a full-time community engagement specialist who will be working directly with our service providers to understand who are the communities that we're serving, what are their cultural and linguistic needs, and really trying to build a stakeholder or a community engagement network that is diverse, inclusive, effective, and more representative. And again, you know, these goals have been outlined in our five-less-thousand strategic plan. So it's an intention that we've set for the next five years. Next slide. And hopefully just paving the way forward for the entire developmental disability system. And I believe I have maybe one more slide left before the contact slide. And just thinking about just, I'm hoping to be invited again and continuing to partner with our councils and boards. And often at

035the end of, you know, people ask, well, what can we do? Because this is exciting and this really is the way forward. And it's just a really, just a very passionate area. And I think it's really important for a lot of people, including myself. And I just kind of want to emphasize that we're really working on opportunities where we can learn at OPWDD, but with our service providers, learn and implement best practices for cultural and linguistic competence, create more opportunities to listen, and then respond to the cultural and linguistic needs of various communities within IDD and even people who we have not been serving, or are not able to serve communities who are trying to access services, but then working together to create a vision and action plan to diversify, you know, our boards and

036councils and really create, you know, create a vision for diversity, equity, and inclusion with OPWDD, our service providers, our CCOs, and, you know, advisory groups, self advocates and families and other members of the developmental disabilities community. And so, you know, a lot to come, opportunities that we're trying to cultivate and just really laying, you know, the foundation for the future. It's going to be, you know, decades long worth of work, but, you know, just thinking that we're getting started. And then the last slide is my contact information. I know that was a lot, so we can take it slow. Yeah, but I mean, it's a lot because you're doing a lot. It was actually very encouraging to me. And you thought of ways to reach out to populations not only different populations, but in different

037ways than I would have even thought of. So I find your work to be very impressive. And I'm trying to think of a good question for you or a good suggestion. And I'd look to my fellow board members if they have any questions or suggestions. This is Chris Soriano from the State Education Department. Just one quick question. Great presentation. We just recently in the department, we had a new position of a director for diversity, equity, inclusion as well. And is there any questions? No. Okay. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. This defendants was fine. We shared the discussion on this right here. yarn, it is the. If they have questions we'll

038open it up to the next one. Just a quick question. I didn't know, I mean, there were There you go. Yeah, yes, I'll throw it out there. Just a caution. No, I just want to exaggerate about connection between homeowners and Dei officers. you know, I think one thing that's really incredible about the field of diversity, equity, inclusion is that the I professionals In week. EEI officer exists in community with one another, And I think really anyone's really free to reach out to me and to start that conversation, but I hope to create through these kind of investments an actual formalized network across service providers, across advocacy groups. I know many boards and councils already, entities are investing in diversity, but I agree that we have to formalize that, and that really is the intention to

039start formalizing. But again, we have a very big system in New York State, and this is just us getting started. So as I mentioned, as we continue with the work, there's going to be opportunities to really bring together all the people who are dedicated to setting goals for the field. We're planning with Georgetown University, kind of open houses and town halls, and then engaging in more kind of focused work throughout the next few years. So definitely an opportunity there. And so once that work is finalized and ready to be kind of shared and invited, we can invite people to it. I think this would be a great place to share that with all of you so that you can disseminate that information and make sure that people who are interested and passionate and in need

040are partnering with us to create that vision and that action plan. Great. Are there any other comments or questions from the board members? I have a question. This is Mary Lou. Thanks, Larry. When I hear that word, diversity, equity, and inclusion, it speaks so deeply to my heart. And when you think about the diversity in employment, how will this office, you know, reach out to the people who need to work, be in the workforce, and have all of these diversity? Yeah. Yeah. I think there's a lot of diversified skills. I'm finding that, you know, when someone on the spectrum has the most difficult time getting employment, and companies are supposed to diversify, but they don't diversify by these types of disabilities. They'll diversify by race or they're not diversifying in a disability of developmental disability.

041How is that being addressed in this agency? So I can speak from the DEI perspective, and I think what I can just tell you honestly is that often conversations around inclusion exist in kind of silos. And so the goal is to make those conversations more mainstream and just create a platform where we can openly share and document that these are the goals for employment, these are our goals for representation, these are our goals for service delivery. And so the only way to I feel just from my own advocacy background is creating the space where we can speak across systems about this need or this gap, documenting it, and then holding entities to that plan and to that vision and saying that this is exactly what we need to do to increase representation or increase opportunities

042for people with disabilities or people with disabilities in this specific, you know, age group or in this specific, you know, region or in this specific kind of, you know, rural area. I think we have to kind of define those goals together, and some of that is already, you know, defined in our agency strategic plan, which, you know, I think is a very excellent foundation for really working together to say this is where we want to see the field going. And so I know that that work has just started, and that's an intention for the next few years. But really just to emphasize that we even have to—OPWDD even working on this, we're working in partnership, you know, with other agencies to help them understand that people with disabilities exist and they need to be included.

043And so my own thought is that writing down the goal, writing down the intention, and then working together to achieve it is just an incredible place to start, and that's really powerful, and I feel like we do have that foundation right now in New York State. GREG ROBBINS- So this is Greg Roberts from OPWDD. Marylou, I just want to throw out something else that's going to be out. It's going to be out very shortly. Legislation was passed that required OPWDD to create a training program for businesses and have businesses take an employability pledge, where they would pledge to try and reach out and employ people with developmental disabilities. We have connected with some consultants and are getting the curriculum ready to go, and we're reviewing that with, you know, people with disabilities and employment people,

044and, hopefully, we'll be able to get that out there. So hopefully within the next, not sure the exact timeframe, but we are hoping to go out to the business community with trainings, with information, and to provide them with materials so that they can start hiring more people with developmental disabilities. And you know, it's full of the messages of this is great for your business. You know, we're not really approaching it necessarily from an altruistic, to just employ people for the sake of employing people. There's real big advantages that we really can show. And I think that's why I want to highlight that it's a great business move to do this. Thank you very much. I look forward to hearing more about that legislation. Thank you. Dr. Mir, this is Chris Tisato from the Council on

045Children and Families. Thank you so much for that very informative presentation. I was just wondering if OPWDD has any efforts to diversify the workforce, to have representation aligned with the work that you're doing? And I know that you're working with the diverse communities that we serve. And I know there's a lot of efforts with translating documentation, but I'm wondering about efforts to also provide staff with diverse language skills to deliver, you know, front door informational sessions and engage in that community outreach. So there's probably a lot that I can talk about there. I would say an investment in, you know, training for cultural linguistic competence, investment in language access is definitely part of the plan in the DEI office. You know, utilizing things like a liaison model where we work with our liaisons across OPWDD

046and really talking about what are these best practices. There's just so much technical stuff there as well in the sense that even the vendors, you know, need to kind of modernize themselves. And so we're just trying to get that out there. Thank you. Thank you. Thank you. Thank you. Thank you. So we're working with vendors to understand how they can work with communities and how they can work on a very human level to make sure that translations actually make sense. You know, we've gotten feedback sometimes that even translations in other languages are misrepresenting. And so creating, enhancing the literacy of our vendors, of people, you know, who are providing frontline services, it's really a system-wide endeavor, enhancing our policies, our protocols, our memos. related to translation and language access is definitely part of the plan

047and the way to go. It has been really helpful that New York State overall, through the governor's office, has put into place laws really saying that agencies have to do this work, but going beyond that, beyond just providing a translation or an interpreter, making sure that the quality is good. And so that is where strengthening our partnerships comes in. If there is ever a translation or an interpreter that you have interacted with who was not of good quality, creating a formalized complaint process to get that feedback. Erika McEvoy Solis So as we started investing and saying that we are doing this work in language access, we have gotten some very honest feedback from service providers and people who are dependent on these services. And so I just think we are in a really good place

048to just think about quality and paved the way forward. I think there was another part to your question. There was one about language and then what was the other part to your question? Do you remember? I think it was along the lines of that community outreach and engagement. Like I recognize the under-representation, for example, of Hispanics, right? In the OPWD service system. So I'm wondering if there's any efforts to strengthen that community outreach and engagement to facilitate enrollment and services with underserved communities. I think that is, if you need the evidence, I like to talk about evidence, but in our strategic plan, we've definitely laid out the intentions to continue to support marginalized communities. And so just building the infrastructure to do that, creating the space to do that is definitely... the intention. We have

049really strong partnerships with some of our service providers who specifically serve Spanish-speaking communities. You know, Iberian American Action League was an original participant and partner in our community of practice. We have active pilots like our ensuring access plan, which is basically a redesign of our fund or info sessions. And we actually have Synergia, Synergia who is a provider who predominantly works with people who speak Spanish, and she's actually partnering with us to do voiceovers of our front door informational sessions so that, you know, the voice is of the community by the community. And so we have these really incredible pilots that are happening. And I'm just, you know, really thinking about scaling that and really setting that standard. And I know you asked me a lot of really great things, and I don't think I

050touched on every single one of them. So feel free to remind me. Thank you. Thank you for having me. Dr. Heid, this is Charlie Massimo. I appreciate your presentation. I was just wondering, though, it still seems, I haven't heard anything about possibly utilizing the tools in social media to try to penetrate these groups, which there's so many great targeting opportunities within social media. Is that any part of your thought moving forward? Yep. I think, so Greg can probably speak specifically to the legislation, but there is a legislation that charges OPWDD with doing an anti-Sigma campaign on developmental disabilities. And we just reached out to some of the committee members, those organizations I mentioned, to conduct, you know, focus group research on what does, what does stigma look like in your particular community? And to design

051a statewide campaign that will be accessible in different languages. And so again, you know, really trying to think about language and culture, you know, we all have a language, we all have a culture, but really thinking about language and culture in the design of our materials, in the design of our information. And so we have several examples on the small scale that have a large impact. And so those things are in place. But again, you know, this is really systems change for the future. Eight months of a formal office and, you know, OPWDD's first chief diversity officer. And, you know, it really is just trying to emphasize that we should think about where we want to be in 10, 15 years, you know, after the tenure of all of our careers. And what investments do

052we want to make now? So just setting a standard for the future. So again, I'm hopeful. And I think a lot of you are as well. There's a lot of really good comments in the chat about like recommendations. But just, you know, making the intention together that this is where we want to go. And just, you know, not giving up. And I think that's really important. And I think that's really important. And I think that's really important. And I think that's really important. Well, any other questions? Dr. Mir, you're doing tremendous work. So thank you for presenting to us. And we would love to have you back. It's interesting to hear about your journey from interning at the agency to doing what you're doing now. It's tremendous. Thank you. I've had a lot of really

053great people throughout the OPWDD and, you know, developmental disability service system who just have taught me a lot. And I think that's really nice. Mentoring and working with great people is always nice. So thank you. Great. So I think if there's no further questions, we're ready to move on to legislative update from Alexia. Hi, everyone. My name is Alexia Holden. If you're not familiar with me, I help out with the board. But my main role is in legislative and governmental affairs at OPWDD. So I'm just going to briefly go over two bills that have been active in this current session that directly relate to the board and the current term limits specifically. So this first one is sponsored by Senator Mannion and Assemblymember Santa Barbara. This bill has already passed both houses. So it's passed

054the Senate and the Assembly. So it's now awaiting delivery to the governor for a signature or veto. Delivery to the governor can happen at any point. Generally, we see most of the bills be sent in the latter half of the year. So I wouldn't expect it in the upcoming weeks, especially with budget going on. But that is something that is upcoming to be delivered to the governor. Once it is delivered to her, she has 10 days to sign or veto it or work on amendments with the sponsors of the legislation to edit things as she so chooses. The bill itself would establish three-year term limits for members of this board, so all of you, at which point your membership would be subject to reappointment. So that does mean that you could be reappointed. It doesn't

055leave you at a three-year term limit max, and then you are off the board and can no longer be on the board again. You could be reappointed numerous times if the bill is signed. All current members who are currently on the board would then begin their three-year term, so it's not going to count if you've been on the board for longer than that. You're not immediately going to get kicked off. Your term would start at that point. And at the end of that three years, we would have to see if you want to be reappointed, if the appointing authorities would like to do that, and go from there. So I wanted to bring this up to the board. The governor hasn't made any indication or has looked at this bill at all yet, so I

056implore the members how they believe, how they feel about this bill to advocate on their own behalf, but wanted to open it for board discussion and leave it at that. Did any members have anything they wanted to chat about? Josh. So I actually spoke like a week or two ago with Senator Manning about this and several other things, and at first I was like, you know, I wasn't really a fan, but now I understand it, I see why, and I do agree with it, because there are some, I might get flack for this, but there are, in order for people to really do stuff, there has to be, I don't know, a threat of not being a part of the thing. So I think by knowing, okay, if we aren't going to our full potential

057that we may not be reappointed, then the people who really, really, really actually want to be changed are going to start making moves, doing stuff, and the people who won't just won't be reappointed. So I think it will make the board way more efficient. So I do agree with it. I mean, it's one of the things that I actually think about, I think about this, other than just raising a question about whether or not we are going to be a part of this, but I think about it as serving the neurodiversity people of the state of New York. So I actually do agree with it. I told Senator Manning personally that I agree with it. Yeah, so I just don't want to out record that I do agree with it. Any other thoughts? And any

058members feel free to reach out to me about either of the bills we're about to go over if you have further questions you'd like to talk about offline. The second bill, which is also sponsored by Senator Manning, but in the assembly, it's Assembly Member Seawright, chair for Disabilities Committee in the Assembly. This bill has not moved since being introduced about a month ago. It's in the Investigations and Government Operations Committee in the Senate and in the Governmental Operations Committee in the Assembly. Very similar names, but it is two different committees. This bill creates an official state flag for neurodiversity and establishes that this board would develop, renew, and update the flag as necessary. This really aligns with the past, the progress that the board has been doing and Josh Marcy, the member, has been doing

059related to the neurodiversity flag and the contest that was held last year. It hasn't moved forward yet, so it's not, hasn't been voted on and the governor doesn't have to take any action on it, but wanted to let the board know about this because this would tie the flag to the board to develop and renew and it does align very well with the next part of our agenda for today's meeting. If anyone wanted to have any discussion on this, wanted to open it up for board members. Yeah, I just don't want to let my fellow board members think about this. It doesn't sound like anyone's... I know this is strong opposition off the bat, but I know this is the first time everyone's seen these bills, so I don't expect immediate responses. So feel free

060to email myself and Josh and the sponsors of these bills because these are not board sponsored or we don't push forward legislation as a board or as OPWDD. Just wanted to flag this to members because it would relate to your duties directly. Great. So those are the two bills that were directly related to the board. As Greg mentioned earlier when he popped in, there are a couple other bills that we're going to talk about that are related to OPWDD and services for people with autism that the board might want to be aware of. And I can send out a list and also include that in this presentation so it's included online for the public to view because it seems like we had a lot of interest in that in the comments and that would be

061good information for everyone to have. So I'll add that in afterwards. We're going on to the next section of the agenda. I'm not hearing any questions or concerns, but feel free to interrupt me at any point. So the next part, we're going to discuss the neurodiversity flag resolution request. Okay. So the next part, we're going to discuss the neurodiversity flag resolution request. So the next part, we're going to discuss the neurodiversity flag resolution request. So just to remind you what the flag looks like, this was the design that won that we held last year. Just some background. So the board announced the neurodiversity flag design submission period at the July meeting last year, 2022. Over 40 designs are submitted from across the state. And in October, the board announced those designs and opened the selection

062process. Over 1,500 votes were cast during the period and the winning design was announced in December. It just so happened that the winning design was also one of our board members' designs. Josh, who you just heard from. And he's been working a lot since the December meeting to raise awareness on the flag, advocate for the flag, and really raise pride around being that neurodiverse and neurodiversity. The next slide I'm going to show has some photos of those work. We're going to invite Josh to briefly speak about what he's been up to and fill the board in. And then we'll discuss the resolution for funding and formation of a subcommittee to figure out more details related to that. So Josh, I'll turn it over to you to share what you've been doing. I'm just going to

063switch the slides. Everyone can see the great work that you've been doing. All right. Well, thank you very much, Alexia. So pretty much since the flag was chosen, I've been at work trying to spread the word of the flag and everything. My goal has always been since day one, I want this thing to be as big as the pride flag. I know that's a very big goal, but I don't see why that shouldn't be achieved. It's really, it's reasonable in my opinion. So I've been going around. Let's see. I'm going to give you a few things done first, spreading the word of it. As you see in one of these pictures of me sitting there at the table, that's me in Assemblyman Levine's office. It's important that we have the lawmakers understand that this flag

064exists, right? We want that done. Around this time, I found out about the bill from Senator Mannion. So I've been speaking to him recently about that. Recently, the Northern Virginia people had a big win in the town of Smithtown, Long Island, and the local government flew three New York diversity flags. Recently, that was big. That's big. And I'm trying to get it done all over because my goal is I want it to fly, all of them fly before it becomes fully state recognized. Again, I don't see why this shouldn't happen. I think it should happen. So I've had flags made on them. Thanks to the help of my mom. I'm glad that I'm doing this. I'm glad that my mom helped contribute money for that. So we paid, personally paid to have those made and

065pins made like these lapel pins. But now, after a while, like, you know, when your family and you're personally funding it, it gets kind of expensive. So I've always also said that I think if something's going to succeed long term, the state needs to put money in because very rarely, if ever, when the state puts money in something, it doesn't fail, right? So we want the state to kind of like put money where it's about is. And that's where I believe I'm to the next slide. I think it could be about what we're going to try to do with putting together a subcommittee. And we're going to see about, um, and these made. And I'm spread throughout the state. Does anyone have any questions on anything? Just just a comment that it's so awesome what

066you've done and the fact that you've gotten the, the flag supported by all those people who voted and were involved and appreciate the personal investment that you and your family have made. And I think you have support from us. Um, it's not a, it's not a huge expense to the state, but it would mean a lot. In terms of furthering awareness and so, um, thank you again for your work and we support what you're doing. Well, thank you very much. Um, yeah, and also it helps, like, for example, when I go to lawmakers, you know, folks like that and I say, hey, I'm Josh from New York state autism advisory board. When you go and approach someone and you say that it, it gives you a sense of like, importance people really like pay attention.

067So. Right if I felt board members, for example, um, want to, like, help out when you go to someone and you say your name and they say you're part of a government, a state board. Like, you understand that people look at you differently, right? They. Look at it sounds like authority, like your authority, so you get a lot more done when you do that. That's how I've been doing this. I don't think people realize I got the gravitas that ads. When you say that definitely thanks Josh. Great, I think we're ready. Alexi. I think you're. Um, leading the 1st issue for the open board discussion. But, um, and then we can open it up more generally. Yeah, I just need to go back to so we can review the resolution before. Before we go forward

068and talk about the committee. Yes, thank you. Okay. Thanks. Yeah, as Josh mentioned in the efforts, he recognized that funding could really assistance running the flag and his message across the state. Um, so the resolution very simple, read it on the following slide and request 9000 dollars from to support an advocacy related to the university flag. Um, and the resolution is pretty general. It doesn't specify how exactly the funds are going to be used, et cetera. Um, so we were thinking to determine how the funds were used, um, it's received and approved by there's that caveat we would like to form a subcommittee of the board led by Josh that will meet to put forth a detailed plan for the board to adopt. Um, so they would be tasked with 1 assisting and sourcing funding

069and a preferred first contract. So just working with myself and I'd help out working with the different departments to further this request and. Work with you on that. Um, so you'd be the liaison there number 2, deciding how the funds will be used. For example, what types of things will be purchased? Josh showed you pins. There's also flag. Maybe some online messaging campaigns as Charlie mentioned earlier. That could be a good idea. Maybe do some social media with it. What will make the most impact and spread the message more? So that's really what the subcommittee would be focusing their work on and they would report that back to the board with a plan on how to use the funds and then support that implementation. Moving forward, and it'd be up to the subcommittee to determine

070how often you need, how much the workload is. Um, I know there was a lot of members that couldn't hop on today due to last minute stuff. So we'll also send this out via email, but if anyone who's on today has interest in joining Josh on the subcommittee, please share that interest and I'll be happy to connect to you guys offline to further work on that. Yeah, yeah, I really encourage if you're thinking about, I thought you just take this step, but I. Because I agree to help with the attachment and, um. This is this is part of something, which is like, historic. I mean, like, the pride flag thing that you can start off as being this massive thing. It start off. It's just like 1 idea and 1 literal flag and it took

071lots of people sharing it, you know, talking about it getting all hyped up and energized. And eventually now everyone in the world knows it. So, we're at that starting point of our story right now. We, I gave him a flag and we're like, we're at like, top base 2 now. But now it's our turn to pick it up. And I run with it now we have to tell everyone about we got up. We have to be getting a check once to do that and history shown if you look at how private spread, like, it can be successful, but we really need passionate people. But so if you're if you're on the board and you're really passionate about this, I'd love to have you on the subcommittee and we could talk. Quickly read the resolution was

072also sent to all members. So, whereas the autism spectrum disorders advisory board, otherwise known as the board. Was created through chapter 469 of the laws of 2016 and whereas the mission of the board is to help provide guidance and information to New York policymakers individuals with an autism spectrum disorder diagnosis and family seeking reliable information regarding available services and supports. And whereas the board is tasked with identifying methods of improving outreach and coordination of services and other matters, being appropriate by the members of the board. And whereas in 2022, the board held a neuro diversity flag contest that received over a 1000 votes. And 40 flag design submission and whereas neuro diversity includes experience such as autism, ADHD, dyslexia, auditory processing disorder, dyspraxia and many other experiences. And whereas 1 in 7 Americans are neuro

073divergent with an estimated almost 30,000 New York state residents being on the autism spectrum. Whereas it is imperative that there be greater public awareness of the unique strengths and potential of neuro divergent people and more must be done to increase awareness and advocacy. At all levels of government and now therefore be it resolved that the autism spectrum disorders advisory board request 9000 dollars from the office for people with developmental disabilities to support its neuro diversity, black efforts and outreach. Further resolved that the board may convene a subcommittee to determine the specific purchases to support advocacy of the flag within the 9000 dollars. Are any members in opposition to this resolution? You have my support. Thank you. Move on to the next part of the agenda. I think Courtney already mentioned it. We're going to have

074an open discussion. I just want to start with 1 topic that I wanted to bring the light to everyone on here and get your input. So, in an effort to have a more engaging board, and in light of the new term legislation, we went through and reviewed all the current memberships, whether that be appointed or not appointed. I'm sure. Mind everyone of the history. There is a subcommittee, a self advocate sub subcommittee that are not appointed members that are on this board. It's only. 5 or 6 of those most of the members are appointed members. There are a couple of numbers on both sides of that that are on the self advocate subcommittee, and then are also appointed by authorities that have not engaged in the board in quite some time have not been joining

075meetings. So, we wanted to see what members thoughts were on a, removing members that are not appointed and then be if they are appointed, we can't remove members just as a board. If they were appointed by. A authority, but we can reach out to the authority and make, let's say, if it was the governor or the Senate leader, the minority leader of the assembly. Hey, you have an appointment appointment that hasn't really been engaging. Would you want to replace them? Or do you want to try and contact them themselves? We just wanted to put that out to everyone and get your thoughts on. Well, for me, I think it's good because again. Um, this board again, we're here represent like a large amount of New Yorkers, right? And, um. We're supposed to be firing on

076all cylinders and. We aren't when people constantly do not show, most people are not like putting an effort. And for every 1 person who's not putting effort, there are probably 10 people who would like. Love to have the chance to join and then put the effort. And the more people we have, we put an effort, the more effective we can be. So, we're doing a disservice by having people on here who are not going to do anything and just see it because this isn't like something where. Yeah, it looks good, like, on a resume, but, like, you can't just have that. And, like, not do anything like, this is something that you need to ask. Ask that we could work into because lots of people, like. You know, we represent a lot of people folks.

077This isn't like. A game or a club and this is something I know I've been. I've been talking about a lot, not on the record off the record. But I've been talking about this a lot because, um, like. It bothers me knowing that we can be too so much more for the people. We can be further along in some of the main processes. But we aren't because I don't think that many people take this very seriously. And I say this based on lack of action. So, I think, yes, the evidence is in the lack of evidence, so to say. And again, I know by saying this, I'm not here to make friends. I'm not here. I'm here to get stuff done. That's why, like, I was, I was, um. Not only by 1 center and

078put on by 2, there's because I'm, I told him straight up, but before they put me on, I'm going to get stuff done. And part of that is that maybe I'm not always popular. Board members, but that's okay. Um. Uh, we need people who are affected thanks, Josh. You have your hand up. Yes, I think maybe we should make an effort to reach out to those who are not. Attending on a regular basis to determine their interest, perhaps they're going through a busy period at their work. Or have family emergencies, so just to find out if it's a temporary thing, or if they really. Just no longer. Interested thanks I do want to clarify that for the specific situation I have. Tried to call and email many of these people. So we are at the

079point where I just can't get in contact with them. So, not sure if you have any changing thoughts based on that information. So, I totally agree that if someone's going through something, we should give them the time and if they want to come back and engage with the board, totally want to allow that that period. Yeah, I think it's a balance, um, you know, I think. You've done, I believe a couple outreaches at this point and to Josh's point, we want to make sure that the board members are engaged and that we're focusing on issues that really need attention. We don't want to kick people off if they are going through something, or if they, they need some amount of time, sort of to step back. We want to be able to allow them to

080continue if they want to. So, it's a difficult issue, but. You know, like I said, it, it came up in conversation. And, um, and we just wanted to have an open dialogue about it with this group. Any other thoughts or opinions Patrick and Mary Lou have their hands up. Yeah, yes, I have a question. Uh. I was appointed by Senator who's no longer at the state Senate. So, um, the replacement. His replacement probably doesn't know me at all. So what would that. Mean in the sense that you gets reappointed by the person who appointed you the 1st time. How would that process take place? Yeah, so we don't have the way that members are appointed. You were probably appointed not by a specific senator, but by the majority or the minority leader. And if that

081was replaced through elections or other events, you still count as an appointment from that office and. They keep track internally, but I can reach out to you off. Line and make sure that you're connected with your appointing authority and they're aware of you as well. Okay, thank you. Thank you. Any other. Okay. Any other thoughts on this issue and then we can open it up to other issues. It just real quick for Serena. Um, would we be looking at identifying. Like, some criteria that we would follow that would at least minimum criteria for what. Would lead to dismissal. Of a member, I think that's a great point. Chris. Um. We, we could discuss that today, you know, if you miss 3 meetings in a row or 4 meetings in a row, which is basically missing

082a whole year. And then there's been outreach. To identify if there's an issue, then we would look at. Removal something like that I'm trying to determine what's reasonable. Welcome your thoughts on that. And that something like that we, on some of the advisory boards that we have. We have some minimum criteria, mostly around, you know, the attendance and then does involve that. That connection and outreach with the member to check to see what's going on, but also. You know, just to close the loop on if we're going to move forward with that decision to dismiss, but typically it is around. The attendance, because that's something that can concretely be measured. Thanks yeah. Yeah. So maybe Alexia, maybe an action step is developing something specific for reaction at our next meeting of. Something along those lines

083of, um, you know, if. A certain percentage attendance, or a number of meetings that are missed in a row. Because, you know, everybody's going to have meetings that they have to miss and they shouldn't be penalized for that. But if they're missing, if they're missing basically a whole year, then. It may not be that this is a priority for them and we want it to be. Yeah, yeah, definitely definitely. Yeah, I know. Like, not a lot of people like, you know, why discuss this, but it is important because. Again, like, we're representing a lot of people, a lot of people. Right, I see Patrick has his hand up. Do you need help on your name? Looks like you're off mute now, but we can't hear you if you are talking. I apologize Patrick, if you

084want to put what you're saying in the chat, if we're having some audio issues, I can read it out loud. For you, I got added for the non appointed members of the self advocates subcommittee might be a good idea to discuss while we're talking about this. Um, there's no limit if we want to add more individuals to that subcommittee instead of just removing a few that are not active. We could just add more on and see if people come back around as well. That's an additional option. Yeah, I like that idea. Anyone has any continuing thoughts on this? Please feel free to send to me. And I'll. Uh, disseminate to the rest of the board and I'll bring something back. I'll work with the chair and have some concrete plans for everyone to discuss at

085the next meeting to set forth a policy on that. Thank you for that suggestion. Great. Great. Um, any other issues recommendations that members would like to raise. Doesn't doesn't sound like any, um, I'll let you say, I know you potentially were interested in discussing meeting dates and since we have a little extra time was there did you want to. Cover that today, or. Yeah, that's a great. Thank you for bringing that up. Um, so obviously, with today's meeting, as Courtney mentioned, there was a lot of issues with booking in in person room and then a lot of members weren't able to make it Albany for this date. The next meeting, I believe is in July. Um, and wanted to hear what members thought about either trying to keep the virtual and in person option for

086every single meeting looking, we can try and have 1 meeting per. Year fully in person where members should expect to travel and then the rest is virtual right now during budget negotiations. There's a couple of different. Things within the bills that could allow full flexibility. So we have a lot of options here regarding if you want to. Stay virtual push for fully in person do a hybrid model. A lot of options. I think hybrid. Yeah, and I like at least 1 in person myself. So. I would agree with a hybrid, you know, some of us are not in the Albany area. Unless you want to do 1 down in New York City. It would be a lot to travel up to Albany. We could do multiple in person locations. We can set 1 up in

087a central location. I believe in. Long Island, New York City area 1 in the Albany area, and then 1 in Western New York. So there's 3 different locations to be in person, but that does still take away a little bit from the. Everyone being in the same room, engage with each other part of it. It just it's different when it's important. Like, when I went to last time in person, it's different. It's just the community. I feel the communication is different. It's better. And just from experience hybrid meetings where there's a group of people in person and others joining virtually, you got to make sure you also have the. The technology to make everything be able to be heard and clean and we're all when we're all virtual this, it's very, it's very smooth and

088seamless. I. We have found that hybrid meetings are a little bit more challenging to pull off. Effectively, so just keep that in mind when you're considering a hybrid meeting. So it's just a suggestion. I would agree with having. Virtual meetings, but 1 in person, I think that is a good compromise if possible. That's what I would recommend. Okay, and I just want to share for Paul, because he is for Patrick. Excuse me. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. All right. Any other issues that any board member wants to bring forward today? Okay. Well, a good meeting, and I hope everybody has a nice weekend, and we look

089forward to regrouping in July. All right, Courtney, we have to do a public comment really quickly. Okay. So, just some basic ground rules, if you would like to speak, please raise your hand and we will call on people when it is your turn to speak. You'll get a request asking you to unmute at which point you can speak. We ask everyone to keep their comments to 3 minutes. You just got a request to unmute to be able to speak now. Oh, oh, can you hear me now? I'm sorry. Sorry. I just want to make sure. Okay. I just want to ask you a quick question. So how much. Participation or involvement when families want to know more. About your advisory, is it just based on. The, you know, when you have an advisory meeting like

090this, do. Family members like me can get involved or. Have a say in certain things, or what's. Happening to the our loved ones, because I'm hearing all these things that's going on and I just want to make sure that. I know you guys have a plan and everything. But I'm just more concerned about how it's being reached to other. Family members when they don't know what's really going on with. There's been so many delays with the employment. It's it's has suffered so much. For the past several years, so and that's what really. Concerns me right now about the process. So, if anybody would like to, you know, I mean, what I can do. Yeah, this is this is Greg Roberts. Okay. Thank you very much for the question. It's a great question. There are a

091number of things you could you could do. So, 1st of all. It does have a website that you could. Log on to and put in your, your email address and you will see the office on anything that's happening with policy. Not everything. It's when large policy events happen, or when things are happening that the public needs to be alerted of. There are alerts. Yes, there is a development ability advisory council called the, the, the, for short many times that information about that. A group is also on the website. To me quarterly, and they are statutorily appointed again to help advise the commissioner on issues for all developmental disabilities and not just autism. Um, you know, are very, very similar. Uh, uh, across the, you know, across the many different disabilities, they also quarterly meetings and

092do public update. Um, the web page also has the 5 year plan that was just put out by recently and there does have public hearings on those plans. But depending on where you live, there are also a number of family organizations that have great networking opportunities. Um, if you wanted the, the, um. You know, reach out to me or elect you, I could put our email in the chat and we can connect you depending on where you live. Thank you. Um, there's a remote, but there are also some in virtual all the geographic areas of the state. We'd love to try and connect you. And advocacy is really important and hearing from parents is absolutely critical to. Yes, yes, thank you so much. I think this is very enlightening and very helpful for me. Um,

093definitely. See, a lot of work that you guys are all doing, and I just look forward to really. Seeing where this goes. Yeah, thank you. Thank you next step. We have Nicholas G. you should have a request on you. I know yes, we can hear you. Okay, my name is Nick. I'm an attorney. I practice for 25 years in New York, and for the last 10 years, I practiced here. In Buffalo, I'm also diagnosed autistic very late. In life, I work with. Autism services and autism advocacy organizations here in Buffalo. And, uh, my question is addressed to Dr. And that is, um, Buffalo. Is a extremely diverse city. My wife taught in the Buffalo public schools for many years. And she had, um, uh, minority students. Black, Hispanic, a number of refugee students. There are

094probably as many. Ethnicities here in Buffalo is there is anywhere else. I would be interested in knowing, um. Like, is anything being done boots on the ground? In Buffalo, or any of the cities or. You know, toward implementing your policies and projects in these communities. I'm sure. That, um, the underserved communities in this city. Uh, and cities throughout the state of New York. Um, you know, could use. The intervention that you're talking about. Um, not only with their children. Um, but adults identifying those people who are. At risk or actually autistic and need and could use the early intervention. Um, but. I'm not sure. Um. It's not something that we're fully aware of. Um, but that's something that. Other city council members are not aware of. Um, or recognize late in life in their adulthood.

095Um, of their, uh, developmental disabilities, or whatever you want to call it. Um, I'd be interested in no, you know, practically speaking. Sort of what's going on. You know, or if there's anything, anything that can be told. I addressed it to Dr. Mur. But if there's anybody else on the board, who wants to speak to that. I'm not sure if Dr mirror is still on the call. She might have had to hop off or something else, but I took notes on what you just said, and we report these meetings and I'll send that question to her. And if you want to privately send me your email in the chat, I can follow up with you. I actually, I don't know how to do that. I'm not a. No, it sounds like she is here. So.

096Yeah, and I think actually, it would be nice to get questions. You know, in comments and writing, I already have been kind of responding to comments in the chat, like, 1 on 1. and again, I just kind of want to emphasize. I'm actually really glad. Um, that a lot of these topics are coming up and I think 1 of the most important things is to create the space where we can talk openly about intersections of disability and other identities that people experience and live through. And so again, that's, pretty much the goal is to create that space so that we can all kind of come together and really talk about the experiences that we often don't talk about. And so I think now that I kind of presented here and opened up that conversation when

097those opportunities are formalized. I know many of you in the chat ask, like, how can you be a part of this? How can your family really contribute their experiences and share your stories right now? I'm like, actively working to create those spaces. And so 1, those 1, those invites are ready and those spaces are created. I'd like to share that with this board and hope that the board can continue to share that invitation so that people can kind of come to those spaces. They're going to be. Some virtual and some in person opportunities across New York state this year and I think that would be just a great place. For us to document the experiences publish the report. And then really figure out how can we respond to those recommendations and again, this is a.

098This is statewide and it's a really big endeavor. Um, what you're talking about, you know, acting on those recommendations on those needs, we're going to be the 1st state in the country to be doing something like that. And so it's really paving the way forward. So. I'm just going to emphasize that that is the plan, but we do need to. Have these conversations formally. As a DD community, not just, you know. Kind of through a presentation or something like that. So again, that's the goal. And so when I'm ready, and when those invitations and those spaces are created. I'm going to share that information with all of you and with the board. I'd love for all to come to those opportunities and just. Kind of help us document and just make sure that that knowledge

099and those experiences are represented. I think to start that's what's most important. So, hopefully that's a little, you know, a little helpful. I don't. I'm not necessarily able to offer all the solutions. I think that there's a lot for us to talk about and I just want to create the space for us to have those conversations. Thank you. Okay. That was minimally helpful, but. Okay, the next public comment will be from Ruth and W, you just got a request on you. Say that I do support diversity flag. I am autistic myself and other thing is, I hope it's going to be part of the. How do you say education, I guess, but where the inclusion part to, like, learn about autistic pride and like the disability pride and the neuro diversity movement, because that's very

100important because all right, here's the other thing. We need the staff to understand that because they need to help autistic people learn about autistic pride and disability pride because that is super important for autistic mental health to have, like, because it helps with self acceptance. Like, I've learned from my own. Self learning about the office of community and connecting with all their autistic people help so much with self acceptance and can help with depression and all that kind of stuff. When you start to feel pride and you start to realize that there's nothing wrong with yourself and your brain just works in a different way. So, I guess that's just my main point is that I just want to emphasize that's very, very important. That's a staff. Learn about that topic great suggestion. Thank you.

101Um, you will get a request on you is Laura. I've seen the emails for these before and it's the 1st time I've dropped in. Can you hear me? Yes, yes. Okay. I'm a parent of a 26 year old male that is in the spectrum and slightly developmentally disabled. I've been keeping my eye on. A lot of the legislation that has to do with housing. I'm a single parent, I work full time and as you well know, is privatized. A lot of their services, which means the people that work in the office of these organizations, maybe full time employees with benefits and someone will do their work if they don't show up. But if a mentor doesn't show up, we are in an inarticulate way shit out of luck and it's very difficult for a person

102that works full time. Who's got a child that is in the spectrum that doesn't like to be alone or or perhaps can't be alone because we all know there's different levels of development. So, I've been looking at the legislation on housing and I haven't seen much movement on that in particular this year. Although it, it, it appeared to be more in conversations last year. And my understanding is there was a federal lawsuit that indicated that that was supposed to be the top priority of in New York state that that housing needed to be. Addressed for those that. Obviously can't live on their own and my understanding is there's over 17,000 people on a list for housing in New York state that fall under the umbrella of developmentally disabled, which would include those with autism. And

103I didn't hear any update with regard to that legislation when you were speaking on that. Looks at defer to you about the legislation. Um, please correct me if I'm wrong off the top of my head. I'm not. Uh, I am familiar with what you're speaking up, but I don't want to speak out of line without review. Do you want to send me an email and I can help answer your questions offline? I'm sorry, I think you accidentally were muted by the system. I put my email in the chat. If you could send that to me via email, I'd love to talk to you further offline on that 1. Okay, but is that at all a priority of this particular board or should I be looking more at the board that isn't focusing on those in

104the spectrum? Yeah, I think all all options are fine. I know that some of this board are very concerned about residential services members of virtually any other board that with. There are many opportunities to advocate and encourage you to do so at every opportunity. Thank you very much. Thank you. The next person in public comment is Ralph W. you just got a request to unmute. You're having an issue unmuting. You want to know in the chat and we'll try again. I think we can hear you now. Okay. All right, so I was just saying, my name is Ralph Warren, Jr. I've made some public comments in the past. I have attended a number. I don't know how many of these board meetings. I'm on 2 other official boards on Long Island related to these services.

105I get self directed services, older adult. So, basically, some of, you know, me, so my concern is something I've raised before. Um, I would make a request. Now, and that's to ask that the board. Um, uh, start some kind of working group around health issues. Medical service needs for people on the spectrum that get these services. Um, I don't think that, uh, it would be, uh, duplicative, you know, duplicating the work that's being done by either any of the other boards, like the DD. A C per se, um, exactly. Um. Since it's more specific to autism, um, I have a research background. I've been involved with some other things in the past year that deal with these kinds of, um. That these kinds of issues on a practical level for for people on the spectrum,

106not just in New York, but other other states. So, we definitely need this and I don't want it to say that it would be subsumed by whatever, um. Forms will be developing around managed care. It's a bit more specific than. Managed care, so I'd like to get some feedback from you guys on that and, um. And find out if you would open up to other. Members outside the board that would want to do. Uh, put in time on working groups, especially on this particular topic of health needs. I certainly think it's something that we could discuss at our next meeting of how best to incorporate some of that. Some of those needs into the work we're doing. Okay, great Thank you. The next public comment is Melissa B. you just got a request on mute.

107Hello, can anybody hear me? Yes, we can. Okay, my question is, this is a whole brand new world for me. I've never been in this. Situation before and until I guess. It has changed my situation and I am now taking care of my nephew. And on my own, I got him died going on. But. What my question would be is that with these. Agencies and organizations that you guys have in your resources for us to. It help and and, um, get services for them. I'm wondering, is there a department that you guys have. That would actually have these people be held accountable or have them regulated to do exactly what they're saying they're supposed to do other than what is really going on other than me just. Being a grievance, which. Actually, basically does nothing.

108So, do you guys have a department like that? Was there ever any a suggestion for a department like that? The board itself doesn't have a department that would oversee or have any accountability measures. The office we do have a Department of quality initiative that does different. Uh, checks and balances there and hold different providers. And our own state operations side accountable if there's mistakes that are made. We also have an investigation agency, but you were breaking up a little bit. So I'm not sure if I got the full depth of your question. Well, more if there's an issue or things that you actually supposed to be getting services of teaching them skills in order to become independent and that's not actually. Going on there, you know, just enough to. Pick up 4 hours. I mean,

109that itself is limited. But people who work full time jobs, I don't understand how that's still possible, but, you know. They need to be held accountable if I'm expecting that, you know, these agencies are teaching them these things so that he can become independent and, you know, help me out. And I send them there and he goes, and he's watching movies. You can do that at home. So, is there a department that actually regulates these agencies of these resources that you guys have? Or some sort of survey find is that I've been told to just all the grievance. And it just doesn't go any further than that. Just recommend another agency. And then you're playing trial and tribulations with all these agencies. Yeah. Can you please clarify if you're speaking about a student about an

110individual that's in school? Are these a school age. Services, you know, 28 in the services that you guys provide that they have or. Evening have, or whatever the supposed to be, but my understanding a day have is supposed to be teaching them. Skills so that they can become independent. And I'm finding that that's not exactly what's happening there. So, this is a great with your, your email or my email was earlier in the chat. I can give it to you again, but if you wanted to email myself or Alexia, we, we'd be more than happy to try and connect you with somebody. At a regional office or at central office to hear your concerns about the quality of of day programming. Okay. It is about to expand. Yeah, um, day program is about to expand.

111There was some, um, um, you know, there were some, um. Opportunities for people to receive in their, in their residences and a number of programs. Uh, there was sort of a contraction about because of staffing about the number of day programs out there. We are looking to get those back up and running again within the next few months and the federal governments of the flexibilities are running out in the next few months regarding. Um. Providing day services in different places and in quality day services. So this is really probably a good good time to. Make your frustrations be known your concerns known, um, because there's. You know, expansion in the near future, and we want to make sure that the providers can do it. Right. Okay, that'll be great. Thank you. And thank you. Greg.

112We have a public comment from Deborah W. Can you hear me? Yeah. Okay. I can't wait to see that new flag. I wanted to speak just to piggyback on what the previous speaker said before I go on to my own issue. It's a matter of supply and demand. I have a 33 year old autistic daughter. And she is now she was in a group pump for a while. She was utterly miserable. She got into an apartment and very grateful with an advocate for many years. And she got it in 2019, fall of 2019 and then, of course, code hit a few months later. It's supply and demand I had, I was living out of town. I had to move back to personally manage it. There was nobody that wanted to work at the beginning of

113cobit. And here she was in a new apartment that I worked so hard to get her and no one wanted to work. So people were collecting unemployment and then they did other things. I don't know what they're doing. 1 person is working a target because she gets benefits was supposed to be our contact. And then when I went on care dot com, I found out about that from another professor. A health professor who I met at your meetings. Thank you for that. I've used people from care dot com. The problem is, I'm grateful to have the helpers, but they're basically glorified babysitters. My daughter is a very high energy person with lots of interest and she sits around. She has a tremendous memory for for. Scripts and things like that she memorizes the whole. Blu

114ray or DVD that she's been watching in English and even in Japanese, because she likes anime like this girl woman needs more to do. And, you know, I finally found somebody steady. And she was supposed to take her out in the community just locally to the library to the power to go for a walk. And she said, I don't want to take her in my car. This was after I hired her and she said she would. So, without my permission, she just took her in a cab to the library 1 day and I thought, why would we pay for a cab to go to the library? It's ridiculous. It was like 30 bucks. The library is a 6, 7 minutes away on a side road. You don't even have to get on a highway or

115a main road. So I said, please don't take the taxi again. You have to ask us for, you know, I'm the guard. I've been having a terrible time getting them to do their job. We have the goals. We just redid the. It's a matter of supply and demand. I've had more than 1 worker, probably 3 or 4. Tell me. I prefer someone nonverbal who just likes to sit there and be quiet, watch TV or draw. My daughter's verbal, she's kind of like young Sheldon, you know, or Jim Parsons character on Big Bang. Not as brilliant as that, but very active, very fussy, likes things a certain way. Anyway, it's been extremely challenging to say the least. And I had a question about that. So, my latest Comhead worker was a very experienced woman in her

116early 60s. She's been doing this for many years. She even has a degree in child care. She's the one that said, well, I don't think I can take her in my car. We've had many other Comhead workers take her in their car. There have been other issues. Like, 1, just dropped her off at a mall and drove away. And that is not what's on her plan. She's supposed to be supervised. But anyway, they have taken her in the car. They may not follow our. Our plan, but this 1, I want to know, and maybe the attorney would want to answer this. Is there I missed the very 1st, few minutes of the meeting. Maybe you addressed it. Just is there a liability? Is there an increased liability if if we. Have somebody take our child

117or adult child. Child in their car again, it's not long distance. It's the next town over or our town. So, 10 minute ride 7 minute ride. Not on highways, nothing too stressful and she gets reimbursed for the mileage. Is this an issue? What should we do about this? Because I'm kind of stuck now, like, she goes to a special therapeutic course back riding. It's literally a mile down the road. We can walk there, but there are no sidewalks. So, I have to, I live 45 minutes from where I have to go and take her there. Because the car is there. Because the comment worker won't. And the public transportation is pretty limited where she is. So, I personally am not familiar with. How to embed the answer to your question, but I'd love to connect

118you with the correct people at who could answer that. I put my email in the chat or you could probably send me yours and I'll reach out to you. I'm sorry, who is speaking now? Yeah, this is Alexia. I have your email. Very good. I will reach out to you. Thank you so much. I apologize if I don't answer your question. It's a thorny issue. It's a thorny issue. And the related issue is, you know, the bus. There's a special needs bus that picks people up. They require that you stand outside for 30 to 35 minutes in all weather waiting for them. They won't text you when they're nearby. They won't buzz the buzzer. And for my daughter, that's a deal breaker. She just can't stand outside for 35 minutes. She can take it home

119if she's in, like, she has a music class she takes once a week. Right now, I have somebody picking her up. But not the comment worker. Not the comment family member. But it's possible that she could take it back because it's a ground floor and you can see the van through the window. So you don't have to stand outside. You can just sit near the window and watch. But she's in a back apartment. She can't see or hear what's going on in front of the building. And it's a pretty busy lot. And the idea of her standing there for 35 minutes, that's why we don't use it too often. To transport her from where she lives to something, she really needs a person to drive her. Yeah, I hear your concerns. And I want to

120make sure I flag that to the correct parties that are able to help you either find other services or address your concerns. So thank you for bringing that up. I look forward to working with you. We have one more person in public comment. Just the name John. Just got a request to unmute. You are unmuted, but I cannot hear you if you're speaking. Oh, shoot. Can you hear me now? You can hear me now. Hi, perfect. First time I'm using this thing. I think it's the first time I've used this thing. And I think it's the first time I'm attending this kind of meeting. So I'm not really sure. I'm still trying to figure out what you do exactly. But my name is John. I'm a self-advocate in the self-direction program, OPWDD. I live in

121New York, of course, Columbia County, narrow it down. But anyway, I'm having a lot of issues. I've been hearing a lot of this stuff, which a lot of this stuff I can relate to. And I think for starters with the people, you know, I'm noticing the people not, you know, what do you call holding up their end of the bargain? That part of the topic there, I remember. But before I continue, I just wanted to know, I'm trying to see where you, you know, what you do exactly. Because I'm not sure what issues you exactly do. Because I'm at the point where I got a lot of problems going on in my life. And I'm having trouble, you know, as a self-advocate. I'm having issues with advocacy, you know. And you have, you're supposed to

122have your services have your back. I just had this discussion, long discussion with Senator John Manion's office. I had to put a nice lovely complaint about several to his office over the past couple months because I'm just getting disgusted. And, you know, starters with self-direction, I mean, the ComHabs. I'm so tired of, you know, I don't know which is more hilarious, some of these people. You know, I understand there are good people. I'm not just talking about self-direction, too. I'm also talking about the system of OPWDD in general. There are good people out there that do care about the system. You know, they do care about their jobs. But there is, you know, there are those that care and then there are those that are just taking a job just to take it. I mean,

123I have people that, you know, I've seen over the past years. And so people that, other words, I use my ComHab, for example, would come here and just to play on a phone. And I'm a 30-year-old young man right now. Back then I was 27 or something. And, you know, I'm a very active person. As much as I like watching someone watch movies on their phone or text on Facebook, I want to go places. I mean, I ain't dead yet like I bring up. And they would be playing their phone and then they would go around and say, we're helping Mr. Mola. Are you really? That's why, you know, I'm still, you know, we're sitting at the house. That's why at my insurance I still need help with my insurance because there are areas where

124I do struggle with. My care manager keeps passing that over to me. Another thing too, care managers, I feel like there needs to be something done with care managers because my care manager barely calls me. To be honest, I don't even know why half the times I have a care manager, he doesn't fight for me. I mean, I got to, you know, and I don't know if you, I'm hoping you take abandonment seriously because I actually do. And I'm sure if anyone else was, had to go through what I went through back in the end of November and the beginning of December last year. I'm sure people will be having a different approach. I actually went to, you know, on vacation and I'm a, you know, I'm a 30 year old young man. I never

125left my state before. I never technically been on an airplane before. You know, I'm very good with directions. Don't get me wrong. I mean, I'm the one that normally directs my mother, but, you know, for that to work, you know, you have to be, you know, you have to be out of place before. I mean, and nothing more worse. I mean, you know, than being in a place, you know, being, I don't know. I don't think I ever felt this way day in my life. Not know where to ask if you can wrap up just because you're at the 3 minute mark. We have 2 more people. Oh, yeah, sure. Well, I want to know what does about people that get that abandoned someone other words someone takes trying the best way to explain it.

126Sometimes when I'm rushing conversations, they don't come out good. But I, I mean, I've been for the last past couple of months trying to. Find someone I had to go down the open. I've been around for a long time. So I'm always trying to find someone who's taking the best way to explain it and I think that's the most important thing. I was talking to some guy. Some guy. John, if I'm saying it right but he never got back to me. He didn't have the decency. He said he was going to get back to me, but. I want to know what what's, you know, what is do about people that strand abandoned people? You know, I didn't, I paid money on vacation not be stranded in abandoned. And I keep hearing excuses and, you know,

127it gets for someone like me, you know, that's supposed to be why I know. I want to trust. But this makes it 1, you know, like I was saying to John manning's office John, I'm sorry. I just there's someone else. I need to get a comment to you. I know that you have a contact in the that you're told to reach out to you. So, if you could please reach out to them, that would be great. Thank you. And then Camilla B with a K. I know you're not raising your hand, but you messaged me that you wanted to speak. You have been sent a request on you. If you're speaking, we can't hear you right now. I'm sorry. I couldn't hear you there. Looks like you're muted again. Can you now? Yes. I like

128said, you hear me. Yes. Hi, good afternoon. Thank you so much for this meeting actually. So me myself, I'm also the parent of the special need child. And also, I'm working in the agency. We, we provide and, you know, there's services for the special population. So, I have a question about education. For mostly this type of children, especially in New York, I did, because I was struggling since last year. After call, it is happening. There is like, you know, they have problems with teachers with all C, with PT and with everything and I call all the offices and, you know, it goes already to, after the board management, but in the fact, nobody can assist you. They drop you to the lawyers and they say, oh, yeah, you have to do the hearing hearing with

129department of education. And when you say, but it's special, not him, it's assistant and he's not getting nothing. Not only me, you know, I have friends like me and we have a group in the Facebook with the families who struggled the same situation as mine. So from hearing correctly, it sounds like you're just having some issues related to services for your child or other children. I'm not sure if the autism board would directly have an answer for that, but I'm happy to help offline and connect you with the relevant parties. I think you have my email from the chat. But thank you. Yes, thank you so much. Thank you so much for answering Courtney. That is it for public comment. I'll swap back over to you to end the meeting. Thank you everyone for having

130us. Great we really appreciate all of the public comments and certainly appreciate everybody from the task force being here today. It was great meeting. We look forward to seeing you again in July. I think that's it. Thank you. Have a great day. Thank you. Bye. Everyone.