Autism Spectrum Disorders Advisory Board Meeting November 6, 2025

001Okay, great. Good afternoon. Everyone. Thank you for being here today for the autism spectrum disorders advisory committee meeting. I'm Courtney Burke chair of the advisory board and we have a lot of folks online today. I saw at least, uh, 18 or so. I know some of those are agency staff and some are members of the advisory board. Uh, we have a handful of folks here in the room as well. I think we'll skip the introductions of everybody today. Um, I'll give a brief overview of the agenda and then for the 1st agenda item, I will end up turning it over to Rachel. Um, but just briefly, we have 2 guest speakers today. Andrew Fowler from the New York state police, uh, field unit, I believe is going to talk about autism awareness visor cards that,

002um, the state police are using. Now. We also have from the transition programs, uh, the transition specifically. Related to individuals with autism who are transitioning from school to college. Then we will have 2 updates from our member agencies, the council on developmental disabilities and the officer people with developmental disabilities. We have a resolution that we're going to vote on relating to lighting landmarks for world autism day and a few members of the board had some other issues they wanted to discuss. So we put set aside some time for. Uh, open board discussion, and then we'll do our usual public comment period before closing out today. Um, so at this point, I want to turn it over to Rachel Baker. Rachel and I had talked a few months, months, weeks ago about, um, this as much

003as we'd like to be somewhat informal on this advisory board that we, we believed it needed a little bit tidying up of the governance because we don't actually have a lot of good governance in place. And so we wanted to make that happen before the end of the day. Um, um, before the end of the year. So I'm going to turn it over to Rachel to talk about, but that's all about. Thank you Courtney. Um, Colleen, could you move to, I think slide 3 or 4 or 5? Thank you. Thank you. Um, so, yes, as Courtney said, we've been talking about board governance, um, and, you know, ways we can just, uh, really cement how the board operates and rules for how it functions. Um, so there are 3 sort of, um, documents, or agreements

004that govern how boards in New York state operate. So, first there's the legislation, which outlines, um, board powers and responsibilities. Next boards have bylaws that govern how the board operates and how they make decisions. And finally, boards have a code of ethics, also known as a code of conduct, um, that sets standards for the conduct of a board member. Next slide. Yep. Um, so first there's a legislation, um, the board was created in 2016, under mental hygiene, law, article 13, section 13.42. Um, it outlines the composition of the board and its duties and responsibilities. Those responsibilities are to study and review the effectiveness of supports and services, identify legislative and regulatory activity needed to improve supports and services, improve interagency coordination, improve outreach and coordination for minority groups and other matters as deemed appropriate by

005the board. Bylaws are rules, uh, that regulate how an organization operates and makes decisions. They typically include details on meeting process, like whether a member attends in person or virtually and how to calculate quorum, uh, which is the term for how many people you need in attendance to take a vote. It also includes things like if and how a subcommittee functions and how recommendations are made and passed. Finally, we have the code of ethics, which is the principles, which is a set of principles and policies that guide member conduct. Um, it typically includes things like if and how a subcommittee functions and how recommendations are made and passed. Um, and so in 2026, so the next year, um, because we do not right now have bylaws or a code of conduct, um, we are going

006to work together to build a set of resources that will help us set standards, um, and have processes. So things run more smoothly and we'll all have agreement on how the board operates. Um, for example, this could include clear processes, processes for how to hold formal vote on resolutions and when and how to share board recommendations and when and how subcommittees work. Um, so some of our time next year will go towards developing and agreeing on those bylaws as a group. Um, so when in the future, if we have a need for a subcommittee to address an important topic, um, we all know exactly what to expect. Any questions before, uh, our 1st visitor of the day goes. Uh, well, thanks, Rachel. Uh, I think it's important that we pay attention to all this and

007put some of this in place for the coming year. Uh, I don't hear any comments or see any hands raised from our board members. So, if there are no comments, I'm going to move on to introduce our 1st presenter today. Uh, so major Andrew Fowler, who is of the field command and uniform 4 section of the New York state police is here today with us. So we appreciate him taking the time to talk to us. He's going to introduce us to the new autism awareness. Advisor card program that he initiated within the state police. So welcome. Thank you for having me here and thank you for taking the time to discuss. This program, uh, we, it really came about pretty quickly over this, this past summer spring, I began looking for ways that we could

008better serve the public. Um, and 1 of those in that research, I saw that there were there were multiple agencies within New York state, as well as adjoining states that were using some sort of platform and communicating with. Uh, people with autism as well as other communication disorders. Uh, most notably in New York state, the New York state sheriff's association uses that utilizes their blue envelope program and but what really draw my attention was something that was occurring in Long Island and Suffolk County and the Suffolk County sheriff's office had collaborated with the winter center for autism. And they created a very nice template for their law enforcement officers to engage with the public and it provided a card that could be utilized to. Any type of confusion deescalate any kind of situation that may

009have been escalating and it was a simplified card that was able to be used by anyone with little to no training. I reached out to the winter center as well as the Suffolk County sheriff's office to get more information and from those conversations we adapted 1 that the New York state police. It was endorsed by the superintendent as well as our deputy superintendent of field command and we saw it as an opportunity to bridge a gap. With the citizens in New York state, we have over 1 and a half to 2Million public contacts with the state police alone, whether through traffic stops, criminal investigations or complaints. And these are a great opportunity for our troopers to work with the public and to try to bridge a gap that we noticed that. Could re, you know,

010could result in a, in a communication. Barrier and deescalate any type of, uh. Of situation that that didn't need to escalate. Escalate any further than where it was. Um, so we roll those out in the fall this year, and we put them in every marked and unmarked patrol vehicle. So that's roughly 1600 vehicles across the state. Every trooper was notified of it where it is. It's an accountable item in our vehicles. So they know it exists where it is and it's in the same spot in every car. We also offered it to the public to download from our public website so that they could print it, laminate it, do whatever they wanted. And they utilize. Same card that was very important to me. I thought the same. Template should be used. So there's no confusion

011as law enforcement uses 1 card. The public uses a different card. We're both using the same card. Everybody understands what it says completely voluntary on the part of the public. Of course, as well as our members, we, we offer it to them as a tool as we do with everything else that we give them every piece of equipment is a tool. Not every tool is used on every job. So, and sometimes they don't need it. But we want them to be able to draw back. And. But we want them to be able to draw back and. But we want them to be able to draw back and. But we want them to be able to draw back and. But we want them to be able to draw back and reach back for those things when

012they reach a point in an interaction that they feel that they're struggling and that they can use this to help ease whatever tensions might be rising. So far, we've had a lot of public response to it. Through the social media campaign that our public information office did as well as a traditional media campaign. We've tried to send out as many cards as we could to those who requested them. Of course, we have a limited amount ourselves that we could provide, but that's why we wanted the public to be able to print the. The public to be able to print the. The print the same exact version and carry it themselves overall. We've received, like I said, it's a lot of positive feedback. It's, it's been going well. There has been no issues that I've been

013apprised of. Um, and we're just excited to see it continue in the future. Make any, uh, edits to it as we see moving forward anything that we see that may work better or it's not working quite as well and with input from the community. Yeah, this is tremendous. I think it, um, very positive development. Appreciate your your work on this personally, I don't know if any members of the advisory board have any questions or would also like to express their appreciation for what Andrew and the state police are doing. I think this is really good. Um, I think it's. I think that this is very important, especially any interactions with law enforcement and people on the spectrum. So, this is really good. I like that the visual as well and that there's color coded. I

014think this is going to help a lot of people. I might have some instances in my head where I'm thinking, you know, this could help someone. So, this is really good and thank you for doing this by the way. Yeah, I think it's wonderful. Also as a follow up to this, is there any discussion maybe of being able to provide a license plate? With some marking the only reason I say that is. I know I had an incident with a family and their son. Where the lights and everything was so overwhelming when they were approached by a policeman and the policeman didn't know prior. Obviously. Um. Um. Um. Obviously that the gentleman had autism and it really did create an unfortunate event. So, I'm just wondering if there's anything as a follow through on this.

015So that before the policeman approaches the car, there's some way of knowing if the young men or women want that to be known. To my knowledge, I'm not aware of that. I mean, that would be more of the Department of motor vehicles that would have to initiate something like that. And I'm sure there's an immense amount of privacy concerns and possibly issues that could come up. Um, but I do see the value. In something like that, unfortunately, that would be out of the purview of the state police. Understood. Well, I guess to address 2 things. So, Charles, 1 of the things I've seen done is a sticker that you can put on the back of the car. So you don't really know what it is kind of like, I'm part of the caving community. And

016we have a yellow bat sticker that you. People don't know what that means. Except for if you're in the community, or if you kind of are in the know, so that might be a way that you could kind of supplement that instead of like a license plate, you could have a sticker on the back of the car. Um, as long as people know what it is. Um, at least the police know what it is. There's also another program called vitals at Minnesota does where it's actually an card where if you come in proximity on the 1st responders phone, it actually pulls up there. And for any information, the person wants to provide. So, you can provide, like, medication lists or, like, communication barriers, stuff like that. But this is a great thing. Um, it was

017nice to see kind of doing, um, some of the autism advocacy work around the country, um, 1st, responder interactions, there is a very deep mistrust between the autism community and 1st responders. I'm speaking as a former 1st responder who's autistic. Um. And, um, I, I think this is a great program, um, The only issue I would have is kind of a lot of people don't have printers anymore. So that might be something where maybe the board could maybe help with the getting more copies of it printed and distributed. Just because I know I haven't owned a printer in probably about 10 years now. And a lot of people of like, you know, millennials and Gen Z don't really have printers anymore. But, yeah, I think this is a great program and excited to see the

018state police implementing it. Yeah. And it would be nice to maybe we have a conversation now with for coming up with a version of this for police and not police for fire and EMS. Kind of having a New York, New York state one kind of along these lines, especially for emergency medical services. It would be nice to have an EMT. I know we had finger spellers and stuff like that. But having something from New York state might be a. More meaningful, so. Yeah, great ideas. Thank you, Mike. I think Kristen here in the room, you had to comment. So, thank you for your leadership on this initiative. We at the Council on developmental disabilities have a member who is on the autism spectrum and he's very much involved with the sheriff's department in Ulster County

019and the blue envelope program. And has been trying to spread the word within. Ulster County about that program. Can you tell me a little bit about the differences between your initiative and the blue envelope program, which I know many sheriff's departments across the state have taken on. Sure, yeah, the, the key difference that I see is that the, this card we, we carry the state police are familiar with it and we. Are equipping our members with it, whereas the blue envelope program, the kind of the onus is on the individual to have that envelope with them to provide it to the law enforcement officer. Or. Or whomever they're dealing with, whereas we have kind of given the awareness to our members that if you're recognizing this communication issue, or or any other circumstance draw to

020this card, see if it helps. Um, that's where I think the key difference is, whereas, you know, a citizen or a member of the public might be experiencing a series of emotions. They may forget that they even have the blue envelope with them forget to to give it. Whereas. I would hope most of the time of our troopers, they're going to think about the various tools that they have and look to draw. From this and and hope to ease any tensions that might be rising and and make somebody feel a little more comfortable. That's great. Thank you. So they're really complimentary. Not not overlapping at all. That's great. Thank you. Any other comments questions. Hold on 1, 2nd looks like we got it. Right in question potentially a lot of the questions or comments are

021really just thank you. There's a lot of people who are are, like, thanking the state police for for taking undertaking this effort. And. Calling out just a local regions, sheriff's departments that have similar intentions. Right? I don't think that the same type of program, but that there's also local police that are that are doing similar things. The 1 question that was more a question is, um, do you know of the card actually being used yet and being useful in any specific scenarios. To date no, I'm not, um, we also didn't require anybody to report usage of it. However, we do review all of our members were body warm cameras. So there's often a review process by supervisors and ultimately multiple layers of supervision and I hope. And I have put out, um, an inquiry to

022them if you see the card being useful. As a part of these mandatory supervisor reviews that you're doing of every member's body worn camera. Please let me know, or if, you know, if it did not work, I want to also want to know why it didn't work or. How it was delivered the various aspects of. Positives and negatives of the use of the card, so I'm hoping as it. Is out there longer, we'll get more of those interactions captured on body cam that. We can then glean some better information from to see what's working. What's not working. What should be changed or if it should be kept exactly the same. Okay, well, again, thank you for your leadership and thank you for being here today and sharing this information with us. Obviously people are very

023pleased. So, thank you. All right, uh, we're going to move on to our next presentation and our 2nd guest today. Is she Lonnie Winston? She's the CEO of the arc Lexington and head of their transitions program, which helps autistic young adults build academic and life skills to transition from high school to college careers and beyond. So welcome to. Thank you good afternoon. Thank you for having us here. We had a slide deck and I'm hopeful that somebody is going to help us with that. There we go. So. Thank you so much. We really appreciate being invited to do this. We love to be able to talk about transition. I am here with, uh, Penny, who actually heads our transitions program and she's in the panel. With the participant, Lauren, rep holds. Just making sure that

024they are able to talk at some point. So, at the art Lexington, we empower more than 1300 people with autism and developmental disabilities across Fulton, Albany, New York. And we're going to be talking about. Transition. Transition. Transition. Transition. Transition. Transition. Transition. Transition. Transition. Transition. Transition. And still Harry counties to live their best slides every day. We partner with our families. And most importantly our 1700 employees and, of course, our communities. 1 of the things we're very, very proud off is that we are 1 of 9 organizations worldwide to have achieved accreditation with distinction from for person centered excellence. So, everything we do. Uses personal outcome. measures as a basis and we begin with the belief that every person can learn, grow, and thrive when given the right support. Next slide, please. Transitions is our signature

025program for young adults ages 16 to 27 with autism and learning differences. It helps them prepare for success in college, careers, and independent living through individualized paths. And we have three paths. We have the first path that is to experience college and earn a workforce micro-credential from the college. The second path is for the young adults that are on their path to earn a college degree. And finally, upon request from families, we created a third path in partnership with our inclusive arts center to explore the creative arts. We operate in Mayfield, Albany, and Cobleskill where students live and learn in a vibrant, inclusive, and walkable communities. I thought the best way for you to learn about transitions is from one of our students directly. So I'm proud to introduce you to Jordan Spray, one of

026our outstanding transition students who will share his personal journey. And show you what transitions mean for him. Thank you, Jordan. Thank you, Jordan. Thank you, Jordan. Thank you, Jordan. looks like through a student's eyes. Next slide please. And Jordan, take it from here. Jordan Sprague Thank you, Shaloni. Good afternoon. Can everyone hear me? Shaloni Singh Yes. Jordan Sprague Hey, everyone. I'm Jordan Sprague. And yeah, the title kind of gives it away. This is my story from being a kid obsessed with Elvis Presley to becoming the student senate president. It's kind of wild. Next slide, please. Jordan Sprague After high school, I really didn't know what was next for me. My big dream was to live on my own and get a part-time job, probably in fast food because I like McDonald's, and play video games.

027But without direction, I started making not so great decisions. The only thing I really had going for me was my love for Elvis. And let's be honest, who doesn't love Elvis? I was messy. I didn't care about what I looked like or how people viewed me. Next slide, please. Jordan Sprague When I started transitions, obviously, I was a little bit more of a fan of Elvis Presley. I was a little bit more of a fan of Elvis Presley. I'll be honest. It was rough. I didn't have the best habits and motivation, but my mentors and my teachers saw something in me that I didn't yet see in myself. They showed me what it was like to build a positive life. And then I started paying attention. Next slide, please. Jordan Sprague At transitions, we take

028real SUNY classes and earn us college credits and micro credentials. That's when things clicked. I started realizing my strengths and I found my voice. I wanted to lead. I wanted to make a difference. Every semester, things started making more sense, and I wanted more. Next slide, please. Jordan Sprague I got involved. I joined clubs. I made friends. And yeah, I actually clean. I was actually started cleaning my room, and it was a big deal. Jordan Sprague I ran for student senate representative, and I worked very hard to campaign, and I won. Jordan Sprague The next year, I ran for president, and I won as the first African American student body president for my for FMCC. Now I represent students at conferences, and I sit on the board of directors. Crazy, right? Next slide, please. Jordan

029Sprague One of my proudest moments was going to the Capitol to advocate supports for neurodiverse people, students like me, and had real conversations with assemblymen, senators about how to make my college and college in the world a better place. Jordan Sprague Because my voice is strong enough to get my organization to look more inclusive. It feels good to know my voice matters. Next slide, please. Jordan Sprague Next year, I'm transferring to SUNY Albany to study political sciences. My goal? To keep growing, to keep leading, and to one day make an impact in my government or advocacy. The future is pretty awesome. Next slide, please. Jordan Sprague When I look back, I barely recognize that kid who started transitions. Jordan Sprague I'm more confident. I'm more happier, and I'm more healthier. And yes, my room actually

030looks livable now. Jordan Sprague I'm more confident. I'm more happier. I'm more healthier. And yes, my room actually looks livable now. Jordan Sprague Transitions gave me the tools, but I had to work for it and I did. Thank you for listening. Oh, next slide please. Thank you for thank you. Thank you for listening. Everyone if you could take 1 thing from my story, it's this it's not about start. It's about where you're headed. Thank you. Thank you. That's awesome. So next slide. You notice there's a little box with a mic drop there, right? So, thank you Jordan your story beautifully captures. What transitions is all about so pictured on this slide is our 3 locations and each in each of those locations we partner with the colleges. We collaborate with the colleges. And as you

031heard from Jordan. Jordan started in our what we call our career track where you experience college and you are on a workforce micro credential. But. When he achieved success in those college. Classes that were related to the micro credentials, he quickly moved to the college track. Several of our students do that and others remain in the career track and going to the workforce. Next slide so the question is, how do we do this? So, our approach is rooted in partnership. We are very proud of what we do with the art Lexington. But when we develop. This model, we need knew that we needed to create partners, particularly in education in businesses in colleges, employers and families. We built this curriculum based on an evidence based curriculum. And what sets us apart is that we develop

032the whole person. We develop academics, social, emotional and practical skills to live life. Students receive academic supports and tutoring internship and job coaching and a residential living experience in apartments. That are located in walkable communities where they learn to live as young adults. They learn to shop locally, manage their daily routines. To do their banking or going to the pharmacy, all of their social activities that they're able to do and truly practicing. Independent. And. To do their banking or going to the pharmacy. All of their social activities that they're able to do. And truly practicing. Independent. And truly practicing. To be to live, like, the young adults that they are after they graduate from our program. A unique part of our program is the peer mentor model. All of our staff, not volunteers, all of

033our staff. Our current college students or recent graduates who are personally walking this path in their own lives. They help our students adjust build confidence and stay motivated. Because our students see our mentors as role models and seeing them, they feel well, if they can do it, so can I. Next slide please add transitions we teach where we call the 3 hours of transition. These aren't just life skills. We, of course, teach life skills, but we focus on the bigger picture of life principles because the specific skills needed change with life skills. But we focus on the bigger picture of life principles because the specific skills needed change with life skills. Because the specific skills needed change with life skills. Life circumstances, but life principles carry our students to success in every stage of life.

034So, the 1st, are in our 3 hours is regulation. And this is where we focus on self management and resilience. For many neuro diverse, young adults, managing emotions, time and change can be some of the hardest parts of growing up. So, we intentionally teach them how to self regulate. How to recognize. When they're overwhelmed, organize their thoughts. Manage their time and handle change and yes, handle disappointment as well in healthy ways. We use real world experiences classes, apartment, living internships, time in the community as opportunities to practice those skills in the moment. This focus on self management and resilience. Is what allows our students to build confidence, independence and long term success. I should have mentioned this before, but as you see our slides, every photo that's in a slide is a real photo. It's

035of our programs, our students. So, even if you aren't there in person, we hope that you'll be able to get a feel for how different our programs and students are. Next slide please the 2nd, are. Is responsibility students learn to take ownership of their choices and their lives. Through self discovery, which is learning about their disability. What their strengths are, where do they need help? They set their goals, they problem solve their concerns and they learn and to ask for help. This curriculum was developed by a head of curricula. Who is a neuro diverse young adult herself in partnership with the center for autism excellence at Virginia Commonwealth University. This sense of self awareness and personal responsibility is what turns learning into independence. I'm sure that even on this little screen. You were able to

036witness that in Jordan. Next slide please the 3rd, are is relationships. Learning how to connect communicate. And contribute to the world around you. Many of our students find social interactions challenging. So, we build these skills intentionally. Developing empathy and tolerance. Learning how to navigate workplace relationships, expanding hobbies on conversation topics. And understanding how to be helpful. Not. Just be helped. We even include details like personal appearance. And social cues using peers and evidence based curriculum from UCLA. These seem small, but they truly build. Trust and belonging next slide. Most young adults tell us that they want to be independent. To live on their own and make their own decisions. But what we teach. Is that real success comes from inter dependence. Building a strong support network. We help our students create a circle of people.

037Who see their capabilities and are invested in their success. Parents, friends, coworkers, mentors. College supports and family, they learn to communicate with that network. Ask for help appropriately. And just as important give back to others in return. When they realize that success happens with others. Not apart from them, everything changes. Their confidence grows their anxiety lessons. And they begin to thrive next slide. These are 2 pictures of many areas. In our programs that provide space. For relaxation. And regrouping for many neuro diverse young adults. The world can feel like a foreign country. 1, where they're constantly decoding a language that doesn't come naturally. That decoding takes energy and without the right tools, it can quickly lead to stress and overwhelm them overwhelm them. That's why we teach our students how to relax and regroup. How

038to rest and recharge intentionally. And purposefully partnering with Mayo clinic. We teach mindfulness stress management. Time management and ways to pause before things become unmanageable. We don't see this as optional or a luxury. It's a lifelong skill that helps them stay grounded and resilient. Next slide so here's what success looks like in practice. In 2025 spring, we had 22 students graduate. With degrees or micro credentials on our college track, we supported 34 students. Who completed over 340 college credit hours with an average of 3.3. Our students are actively involved in college clubs and fully engage in the use of tutoring services. And fully engage in the use of tutoring services. And other supports regularly why that is important is often time when we don't see young people succeed in college. It's because they're not using

039the supports that is available to them. And we, again, as part of our training, we teach our students. It's about interdependence it's about learning what you're good at and where you're going to need some help and how to get that help and support regularly. On our career. Track, we supported 81 students. 71 had successful internships. The ones that did not is simply because when students 1st start, they may get overwhelmed. So we try to keep their schedule a little lighter in the beginning. 35 were in paid employment. And 43 served in valued community roles. Through partnerships with local businesses and healthcare. Hospitality technology and the arts our students gained real world experience and purpose. Next slide please so beyond college and work there's life. Transitions help students build meaningful lives. 84% of our students. Participated

040in 4 or more social activities every week. When they started a program in the beginning. We help we provide those social activities. And part of the learning is. That over time they develop those social, they, um. They come up with it on their own. They come up with the ideas. They organize it. They make it happen because as an adult, you have to find ways to keep your social life active. Nobody is going to do that for you. 91% of our students. Moved to more independent apartments after their 1st year. And each semester more and more students are earning driver's permit or licenses a huge symbol of freedom and achievement. Each of these numbers represent confidence connection and growth. Not just statistics, but real progress towards a full line. Next slide just some pictures. To

041show you where our students are. These photos capture what we see every day, joy and accomplishment and confidence. Each 1 of these moments reflect a student who has found their voice and their place in the world. Next slide this next slide is a picture of each of our locations. The top 1 on the left is our Albany location, which is in the back of the Stuyvesant Plaza for those of you are familiar. Um. Um. Sorry, the 1 on the right top is that the 1 on the left top is our location in Mayfield. The 1 in the middle is again our Albany Stuyvesant Plaza location. The 1, the bottom left is our opening location at SUNY, where we were invited to open a program there after President of SUNY, Coville skill came and visited our

042Mayfield location. Just because there was another meeting. That she attended, she did a tour loved it loved it and wanted to bring it to her college to support students. So we are based right at the SUNY, Coville skill campus. The 1, the picture on the bottom right is our location from the outside in Mayfield. It is co located with the Paul Niagara center for creative arts, which is an inclusive community art center. Where people with disabilities. Um, do art engage in art just with the public just like anywhere else. Um, it is also where you may know about our band flame. That's the home of our band flame and 2 of our transitions graduates are members of the band flame. 1 of them, because of his experience in, um. Transitions he was able to travel

043with flame. To Cambodia, where they were invited by the U. S. government to be on voice of art. And, uh, do a 1 week tour and engagement and presentation and music with people of Cambodia. Next slide please so we are now taking our college and career pathways to the next level through our new. Empowers grant, which we're very proud of. This nearly. 1. Million dollar award will allow us to develop new career focused micro credentials, such as in the 6 that you see their animal care assistant childcare assistant. Food service, retail and safety office management, business management, web development and coding. And we're developing these in partnership with Sunni, cobalt skill and Sunni FM. These micro credentials will prepare students for real. In demand jobs and give them both technical training and confidence to enter

044the workforce. Next slide what makes this especially meaningful. Is that the majority of the funding will go directly to student scholarships. Ensuring that financial barriers don't stand in the way of opportunity. This investment will expand access and strengthen our inclusive workforce and change. Lives for years to come. As a parent of someone with neuro diversity. I am personally grateful for this and can't wait to see the change. Next slide so we're very, very proud of the transformation we see every day at transitions. And we are deeply grateful to you for the opportunity to share a model with you. We welcome questions collaboration visits if you would like. Or partnering on any statewide initiative to support neuro diverse young adults. Our contact information is here you can reach. Out to any 1 of us for, or,

045you know, to go to our website for any other information. Thank you so much for your time and if we have any, you have any questions that we can answer, we'd be happy to. So, you couldn't hear us because we were muted. So thank you. Shaloni. That was a wonderful presentation. It's amazing. The work. That you all have been doing, um, I have a question and then I'll open it up for others. It's a really wonderful partnership that you have with the SUNY schools and full disclosure. I sit on the SUNY board. So I'm very happy to see that partnership. Um, do you think there's the ability to expand it further? And if so, what can we do to help support. Your work, that's the best question I could have received. So, our greatest partnership

046and collaboration. With SUNY FMCC and SUNY, we are still working on it with SUNY Albany and we would love to expand that partnership, but we need somebody like you to open doors for us. I guess we can talk offline after the meeting. Absolutely. Are there other questions from the advisory board members? It's my sorry, it's Michael Gilbert. Can you hear me? Yes, well, good. You guys got to work it so I can talk because I was muted before. Yes. Well, good. You guys got to work it so I can talk because I was muted before. Yes. Well, good. You guys got to work it so I can talk because I was muted before. Yes. Well, good. You guys got to work it so I can talk because I was muted before. Yes. Well, good. You

047guys got to work it so I can talk because I was muted before. Um, I guess my well, the 1 question I have is with your program from a traditional high school or college transition program, and how is it funded. Okay, so what separates us is that we look at the entire person. Okay. So most programs that I have personally experienced, I have learned about our, our focused on success in college or success. access and employment or independent living skills. We take the whole person and our concept of the three Rs is very different. I had mentioned that I'm personally a parent of a neurodiverse young lady. She does not have autism, but she has nonverbal learning disabilities associated with the medical condition. And just like many self-advocates and parents are told, we're always told

048what our son or daughter cannot do. So I was told when she was diagnosed, she cannot drive, she cannot live on her own, she cannot do higher education. So transitions model is based on some of those successes because that is where we practiced not just training skills, but those life principles of resiliency and of doing things that are handing change. That's a big deal. Handling lack of structure because when you move from special education to college or work, you don't have the structure that you were used to and then you're not successful. So it's a different model in a holistic way. How we are funded, most students that are within New York, we get students from all over the country and some from overseas. So if you are from overseas or you are from a

049country, you are from outside of New York, most students are paying privately for it, just like they would as if they were going to college. But students that are from New York State are often, if they qualify, funded through OPWDD or sometimes the school systems fund them. We also have a scholarship program. Basically, what I was going to ask is the kids you're funding, are they 16, 17 or are they over 18? The kids who are in the middle of the school year. Are they over 18? Are you funding the child or the program? So our age is 16 to 27. We offer a variety of programs. So some of them are during the summer. So the younger students that are still in high school are usually doing the summer or the winter or the

050weekend camps that we provide. Not camps as such, they're experiences, educational and life experiences that we provide. We do a mini curriculum and our summer programs, they're actually earning a college credit. But our actual full-year programs where they're admitted, it's after high school. Any other questions? We have one in the room. Thanks very much for your presentation. I was particularly interested to hear you talking about your partnerships with SUNY Cobleskill and Fulton Montgomery Community College. And I think the SUNY system is an incredible resource, and particularly because it has such a geographic spread with its 64 campuses around the state. I think it's a great partnership to expand upon. So I'll put my plug in for that. And also, you know, certainly SUNY Cobleskill, President Terenzio is just fantastic in her efforts to make the

051campus inclusive and to make it a truly welcoming and comfortable environment for students who have a variety of developmental and other disabilities. So I will give her a shout out too. Thank you so much for the work that you're doing, and the band flame is just superb. Thank you. We need more President Terenzio's. Okay. Salon, we see that you have a question. Hopefully you're unmuted. Okay. Salon, did you want to ask a question? Salon came to our program in the very early days. Yeah, Salon, I don't know. You might be double muted. I don't know. I think you're unmuted on this end. I don't know. Try one more. One more time. Not coming through. Yeah, perhaps I don't know what's going wrong, technically. But perhaps we can get your question to Shalomi, or your comment

052in another way. Yeah. Or the chat. Yep. Okay. Josh, I think you have a hand up as well. Yeah. Yeah. So, basically, it's a comment. So this reminds me of program, before college, I dropped out of college, but is run by NYT. It's an And as someone who went to something like this, I can't begin to tell you how impactful things like this are. I went before then, you know, never living on my own, the independent stuff, to afterwards, like it's night and day. So I just want to say that someone who's been to a similar thing, these are extremely good and the impact is like lifelong. So I'm, you know, really good on you guys. Thank you, Josh. Of course. I'm not seeing any other questions. Oh, hold on. Looks like maybe, okay. I

053think somebody was answering a question in the chat. So thank you again, Shaloni, for joining us today and also to Jordan. Thank you for your part of the presentation as well. And it sounds like we're going to be talking offline after this meeting. So we look forward to that and congratulations on the partnership. Truly. Thank you for having us. Yes, absolutely. Thank you. I'm sorry. Oh, hold on. Hold on. Sounds like we might have a question from Kate. Yes, I just wanted to say it's refreshing to just more of a comment that it's just really refreshing to see a program taking a strength based approach to this as an autistic person myself and that it's nice to see things I'm doing similar work in Western New York with younger kids. Yeah. So it's refreshing to

054see that other people are doing it and that hopefully like a shift will happen because neurodivergent children grow up to be neurodivergent adults and yeah, they still need that support. And after being told your whole life that everything about you is a deficit, people need spaces where they can be who they are and where they can grow from their strengths, which is why DIR floor time is also so important. So I'll be quiet now. Thank you very much for sharing. Well, thank you, Kate. The head of our curriculum and clinical services I had mentioned is a young lady who has neurodiversity herself and a true believer of a strengths based approach. She has her doctorate in social work and she also chose a path where she teaches as an adjunct professor at Utica University because

055she wants to influence the way that she's doing her work. So thank you. Thank you. To this day, she's been teaching for two years and she's been being a leader in social workers because when they—a lot of social workers are in our field, whether they're leading it or participating as clinicians, and in her entire education, nobody taught her on how to support somebody with neurodiversity. So she's hoping to influence that. So key component of our program is it is all—we build on successes. We don't build on challenges and needs. We build on those successes. that you can be more successful. I would love to, I don't know if there's a way for Courtney or somehow for me to get connected to her. I would love to get connected to her somehow and talk to her.

056We can and we welcome anyone who wants to visit as well. Yeah Kate, we'll try to make that happen. Yep, okay. Not seeing any other questions so thank you again. Thank you, thank you so much. Do we jump off at this point? I don't want to, I didn't know. You're welcome to stay or go. Completely up to you. Thank you, Courtney. Thank you. All right, at this point I'm going to turn it over to Kristen Proud who I know many of you know as the Executive Director of the Council on Developmental Disabilities. Welcome, Kristen. Thank you very much, Courtney, and I appreciate the opportunity to talk a little bit about the Council's work this afternoon. For those of you who are not familiar with the Council, the Council on Developmental Disabilities is the relatively new

057name of what you may have known as the Developmental Disabilities Planning Council or DDPC. The name was changed to the Council on Developmental Disabilities two years ago based on a change in state law, so we are now the CDD. I've been the Executive Director there not quite two years having come from the Commissioner's Office in the Department of Health and I'm found it very interesting to come and work in such a tiny state agency having come from the Council on Developmental Disabilities Planning Council or DDPC having come from the from enormous state agencies for a good part of my career, both the Department of Health and the Office of Temporary and Disability Assistance. So we are now 14 strong. I've added two more graduate interns in the last couple of weeks. So we are 14,

058but we are small and mighty. I like to tell the team. So the council, if you're not aware, is one of 56 councils around the country. Every state and US territory has a council, and that's pursuant to the Federal Disability, Developmental Disability Rights and Assistance Act of the year 2000. And we are primarily federally funded. The current state fiscal year is the first time we've received any state funding support, and that support is used exclusively to provide for our staffing. Our grant work is all done with federal funds that come from the US Department of Health and Human Services from what is currently called the Administration for Community Living. That part of HHS is the subject of a significant restructuring of HHS that I'm sure many of you have heard about. And that restructuring is

059the subject of ongoing litigation. So where all that stands between the litigation and the ongoing federal government shutdown is kind of anybody's best guess, but that is our federal funding source. As a result of that being our grant projects funding source, we do operate. We operate pursuant to a five-year state plan. We are now in the beginning of our last year of the state plan. Our state plan years coincide with the federal fiscal year cycle, which is an October 1 through September 30 calendar or fiscal year, rather, cycle. So it does not overlap with the calendar year. It does not overlap with the state fiscal year. It all gets super confusing. But in any case, the primary work of the CDD, which is comprised of about 30 members, right now, all governor appointed, and that's

060based on state law. And that's a composition of self-advocate members, so individuals with developmental disabilities themselves from throughout the state, family members of individuals with developmental disabilities, parents. We have a sibling member now. We have a sibling member whose developmentally disabled sibling is in his 70s, which is very interesting, because then that brings the interplay of aging issues to the table. The OPWD is a little bit different. It's a little bit different. We have the CDD having the Task Force on Aging. We at the Council have a community of practice on bridging aging and disability. So it's been great to have that new member, the sibling member, who brings the perspective of being a caregiver and an advocate for somebody who is significantly older with developmental disabilities. So we also have DD network members, we

061call them. Those are members, provider, agency, university centers of excellence members. We have three of those in the state, University of Rochester, Westchester Institute for Human Development, and the Rose F. Kennedy Center, which is affiliated with the Einstein School of Medicine in the Bronx. A number of states don't have any university centers of excellence, so I consider us extremely fortunate to have our university center partners in New York, all three of them, which are incredible not only provider resources, but just resources. And so we have a number of great partners in terms of our DD network partnerships and collaborations, including our communities of practice. And then the fifth member of the DD network in New York is Disability Rights New York, which is the protection and advocacy organization in New York. And they're a fantastic

062partner as well. So the primary work that the Council's doing is our grant work that is coming through two standing committees. The Community and Systems Change Committee and the Community and Systems Change Committee. Both of those committees are now chaired by self-advocate members. That's a little bit different than it was when I joined the Council. But one of the things that I've tried and continue to try to do is to help our self-advocate members to develop their knowledge, their skills, both their advocacy skills, but also their leadership skills. And so we have two relatively young people with lived experience who are leading those two committees. And it's really interesting and rewarding to see the progress that they're making as they're taking things on. One of them, who was extraordinarily shy when I came to the

063Council, now starts every committee meeting with what he calls the Chair's Corner. And sometimes it's about things that he's been working on or is going to be working on. He's recently become the president of his own. And he's been a member of the self-advocacy organization, which is in Rensselaer County. But also, sometimes he uses it as a call to action or a call for people to get involved in other issues that are affecting not only the DD community, but communities more broadly, such as Narcan training for people so that they can help others. So it's been really interesting to watch him use his committee, leadership position, to grow. And expand his areas of interest. The IFC right now is not exclusively, but primarily focused on employment-related work. So I'll start there, since we're just coming

064out of both the National Disability Employment Awareness Month and then, of course, the governor's designation of October as Dream Disability Rights and Employment Awareness Month here in New York. And I think OPWDD had a huge role in the Governor's Dream Symposium. The CDD was a co-sponsor as well. So we have three primary grants that are ongoing right now related to employment. And they focus each on slightly different aspects of employment and employment opportunities. And then we have a fourth that is not so much focused on individuals with developmental disabilities, but rather on their family members to help the family members learn some skills and identify resources so that they can help their family members not only prepare for employment. Also, find employment. And retain employment as well, since each of those pieces of the path

065to employment can be challenging, particularly for people with DD. So the apprenticeship program that we have is a partnership with the Strong Center for Developmental Disabilities, which is based at the University of Rochester. And that is an apprenticeship program for people with DD throughout the state. It provides no-cost pre-apprenticeship training to help participants build entry-level skills for career employers in manufacturing, in particular. And through that grant, there have been a number of collaborations, including with the Manufacturers Association of Central New York and a variety of regional associations through the Manufacturers Alliance of New York State. And there are also partnerships with post-secondary institutions and workforce development boards, trying to tackle all aspects of getting people with DD into apprenticeship programs and then linking them to employers in the manufacturing center who are really in need

066of skilled labor. The second one is a mentorship program. It's called Yes, She Can. And this mentorship program pairs young women with DD in a structured mentor setting with business people, primarily in Westchester and Rockland counties. They are working on a sustainability plan to try to replicate this in other areas of the state, including the state of New York. And it's a three-year program. And it's helping the young women who are the mentees to gain and retain jobs by making valuable contacts and also learning about what it takes to be in a work environment and how to navigate not only the responsibilities of whatever the particular job is, but also the other aspects of being in a work environment, working as part of a team, when there are issues or conflicts that arise, how they

067relate to each other. And so those young women who are in that program are partnered with women who are in the business world in a variety of industries in Rockland and Westchester counties to offer them that ongoing mentorship relationship. Then we have a partnership with SUNY Farmingdale. And that is centered around entrepreneurship and small business development. And although it's centered at SUNY Farmingdale's Small Business Development Center, that is a statewide program that, in fact, is part of the program. Involves a series of workshops that have been developed and presented to introduce the concept of entrepreneurship to people with disabilities through those small business centers that are located throughout the state. So, there are consultants who are working alongside that program that provide accounting and legal assistance to participants who need additional support, registering their businesses,

068you know, so they can get incorporated. There are group opportunities that are facilitated through those 7 small business development centers throughout the state for meet and greet and networking and other support opportunities. And then, of course, ensuring that the individuals who are starting small businesses are doing so in a way that they don't jeopardize any of the benefit programs that they may currently be getting support from. So, things like Medicaid, SSI, SNAP benefits, et cetera. Which are all, as you know, really important work support programs so that people with disabilities can engage in the workforce, but still have the supports that they need to be healthy and successful. So, those are the big ones for our individuals and families committee. We also have, as I said, a community and systems change committee. Much of their

069work is focused in 2 areas housing and then DEIA. We have a community of practice in diversity, equity, and inclusion. and diversity, equity, and inclusion. The grantee for that is HRC and NASA, and they are reaching providers across the state to help them refine their own knowledge of practices through trainings and regional workshops. And the ultimate goal of this grant partnership with a HRC NASA is to assist the providers as they start to formally incorporate practices into their own organizations and with their own staff. Um, we also have, uh, DEIA related grant with the self advocacy association of New York state or, and in case you're not aware is the largest self advocacy organization in New York state. It was founded decades ago now by Bernard Carabello, who was 1 of the class members and

070spent 18 years at Willowbrook and continues to be a huge voice in the advocacy community in New York. So, our grant with is to bring DEIA, um, and cultural competence trainings and discussions into their programming, to help self advocates to learn about these topics, which can be very complicated and certainly in the current environment are becoming even more complicated. So, SANEES has incorporated these trainings into their annual leadership training segments, um, and also, um, highlight DEIA related sessions in their annual conference, which starts this afternoon. In Albany, and it is probably 1 of the largest conferences I have ever been to last year was my 1st year. I'll give a huge plug for SANEES for doing this conference. There are over 600 attendees. It is unbelievable. I'm not sure the hotel is supposed to hold

071that many people, but that conference is unbelievable and our team from the CDD who focus on DEIA will be out at the conference this afternoon. I'm doing an opening session on that very subject. We also have some bilingual housing discussion. We have a lot of small grants that we have awarded recently to give opportunities to individuals who are working in, um, organizations in communities where there are large populations of non English speakers to be able to bring the, the concept of housing navigation, um, and and train staff to be able to help individuals with DD and their family members in the new American communities throughout New York. So, um, I'm going to be talking about that. I'm going to be talking about the, um, the, um, the, um, um, um, um, um, um, um, um,

072um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, to be able to understand what services in the housing arena are available through and the provider network around the state and figure out what type of housing arrangement is most appropriate and then how to access those housing services. And on the subject of housing, our, our committee also has an ongoing partnership with the New York alliance for inclusion and innovation, um, which is a large provider, uh, representing organization. Um, um, um, um, um, um, um, um, um, um, um, and we have through our partnership with the New York alliance, creating a housing resources for independent living, um, is essentially a portal and online repository of information on non certified housing options that are available for people with D.

073D. Um, and that is being expanded this year and next year to include other resources and also put a focus on housing resources for individuals as they are. Um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, um, and that will look both that resources to help them stay in their current setting with the necessary adaptations. Um, or if necessary, what resources and services exist to be able to find new housing accommodations if that is the necessary scenario. So that's a snapshot of our current grant work. Um, we also have a fair amount of communications, um, and public facing education and outreach. outreach going on. The

074CDD over the last couple of years has produced two videos. One is the Willowbrook documentary entitled A Path Forward, Remembering Willowbrook. That was produced in 2022 and actually won a New York Emmy in the DEIA category exactly a year ago. And that video chronicles the history of Willowbrook and talks about how what was happening at Willowbrook was exposed and then what came after that to bring the current system of services and supports for people with DD to where it is. And really, I think, showcases the power of advocacy and activism, which are just as important now than they were all those years ago when Willowbrook was still operating as the Willowbrook State School. So that video now is over 420,000 views and it is available on our YouTube in English, Spanish, and Chinese. And one

075of our latest projects is the Paul and Hava story, A Pathway to Marriage. And Paul and Hava are a married couple on the east end of Long Island. They have been married now 12 and a half years, but have been together for 20 years. Paul and Hava each have developmental disabilities. And this video chronicles their journey and challenges to both get married and then once they were finally married, to be able to live together as a married couple. And so, Paul and Hava are a married couple and there were several months after they were married where they were not permitted to live together in their residential settings and eventually found a provider agency that would have them live in a group home setting and support them as a married couple living together. And I'm delighted

076to report that Paul and Hava are on the road from Long Island with both sets of parents as we speak. They are coming up to join me tomorrow morning and we will be the keynote at the Sanies conference tomorrow. And I always tease them that they are the second happiest married couple that I know and the first one being my own parents of 61 years of marriage. And so Paul and Hava's new goal is that they are going to surpass my parents in the number of years that they've been married. Um, so I will stop there and I'm more than happy to answer any questions or hear any comments and feedback. Well, it's, it's amazing what, uh, what you all are doing everything from housing to DIA to self advocacy. I mean, it's quite a

077lot of work. It's quite impressive. And we're so appreciative of the work that does. Do we have any questions from members of the advisory board? A question is Michael Gilbert, my only question is given everything going on in D. C. right now, are you guys getting pushed back over the term? D. I are doing anything related. Um, I would say that we, I have changed the way that I talk about it and where I talk about it. Um, I focus more on the eye and the a Michael. So that's a great question. Thank you. Um, and the other thing I should mention, of course, because everything in the news right now, you hear the word and the administration freaks out. Correct. So we're, um, and our mission right at the council is, um, to focus

078on. Increasing inclusivity and participation of people with D. D. in all aspects of community life. So it's a natural for us that we're focusing on the. On the eye and the a, that's not to the exclusion of the other letters in that acronym. Um, but but that's our focus. Um, so we are. You know, still moving forward with that work that work is. You know, in the foundation of the federal act of 2000, there are numerous places where, um, diversity, equity, inclusion and accessibility, those terms are actually used. So, depending on where I am and the audience to whom I'm speaking, I, I do often cite the federal act frequently and particularly, um, in our, um, written documents and other things like that, um, and our state plan that we're developing our new state plan,

079which will start in 2027 and run through 2031, you know, we will be highlighting the fact that this work is is specifically required by the act of 2000. Um, and until such time as that act changes, we, we will continue to do this. Um, I will, um, we'll also note that. There was a period earlier in this calendar year when the funding, not just for the New York council, but the federal funding for all councils, um, was in serious jeopardy. Um, I'm not resting easy these days thinking that it's a done deal given the budget situation in Washington. And I am so I was going to touch it before. On that person, because you mentioned a, you have a very good friend who worked with until he got. Yeah. Yeah. Until he got laid off

080and I wonder with our changing and everything going on with autism, if that's affecting you guys in the sense of. Funding cuts from a CL or from given that we have this whole RPG in your controversy now. The, um, the original, um, budget document that was leaked that came from the federal office of management and budget had the council's all 56 throughout the country. Zeroed out as well as all of the network members. So all of the protection and advocacy program funding, and all of the funding for all of the university centers of excellence in across the country in that office of management and budget document. Those were all zeroed out. Um, that was considered the pass back. They call it budget to for to comment on and and send back their suggestions. And so,

081in the budget that was released by the White House after all that information. Um, I think that's a good point. Um, after all that internal negotiation, um, the council funding, um, and some funding for the protection and advocacy organizations throughout the country, and the university centers of excellence made it back in at flat funding. I mean, I will say that flat funding is flat funding for probably now the 4th year if this holds, which. You know, we all know the power or the, the erosion factor of inflation, but I think in the current environment, flat funding is a best case scenario. Frankly. Um, and so, you know, I've said to my team, um, and to the governor's office, we have federal funding. We have an obligation while we have it, um, from federal fiscal year

0822025 to use it. We're going to continue to do our grant work, meet our obligations with our grantees as they're meeting their obligations to us in our partnership. And and we'll just, we'll move forward until such time as the lay of the land is different. Hopefully it's not different. Hopefully we continue to receive funding in the whole scheme of things. Um, things, Michael, the, the national appropriation for all 56 councils is a total of 81Million dollars. Not going to balance the federal budget on that. I understand that I'm just saying, because we know our in particular has shown. Facility with this, not all and circumcision and other stuff to see them and say, because they seem more focused on what causes autism than actually addressing the need for services for people on the spectrum. Thank

083you for your comments. I just said, say that again. Did you do you hear my last comment? I don't know if my last comment made it to work. Yes, yes, we did. Yeah, thank you. It's a very important timely question. Are there any other comments or questions for Kristen? Okay, we'll keep up the good work. We really appreciate everything that you and the council do. So, thank you. I think we are skipping the next agenda item to move to the resolution. And so, uh, I 1st want to start by thanking Josh and his work on this topic and making sure it stayed top of mind for all of us and to some members of the advisory board who helped as a subgroup to work through the issue and come up with this resolution. I think

084many of, you know, we sent the resolution out in October so that everybody had time to review it and it relates to a request from this board that the Empire state Plaza. The Empire state building Niagara falls and other landmarks around New York state. Um, would be illuminated in white and gold on world autism day in 2026 and that the board invites and encourages all local governments, business owners, landmark operators and New Yorkers to use red, white and gold lighting on world autism day, which is for those who you who don't know. Okay. It's up there on the screen is April. 2nd, um, for the purpose of creating that message around unity support and collective pride across the state. And so I don't know if there's any other comments on that. I was gonna call

085for a vote in favor of the resolution. So, are there any other comments before we call for the vote? At the very bottom where you've got, we've got New York City, Long Island sites, it names the wrongs neck bridge and it should be the wrongs. So before we vote on it, I just want to make that comment for correction. Appreciate that. Thank you for attention to the detail. Any other comments before I call for a vote. Okay, all this all those in favor please say, aye. Hi, hi, hi, any opposed. Great well, it seems that we have unanimous passage of the resolution. Thank you. Congratulations Josh and team. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Okay. Thank you very much. Yes, that's the original behind me. I made it October 2021. Yeah, that's awesome.

086Okay. At this point, I wanted to open the floor to any member who wants to add any items or raise any issues. I think Kate Kaufman, you had potentially an issue. Related to the safe foods pantry, but I want to misspeak. So, Kate, why don't we start with you? And then we'll see if there are any other are the members who want to speak. Okay. Okay. Okay. Okay. Thank you. Go ahead. We can hear you. Okay, good. So, hi, everyone. Thank you for giving me a few minutes. First, I want to talk about a project that I've developed through my own business through the beginnings called the beige box initiative. And this initiative was born out of something that I see over and over again as my, in my work as a special education teacher

087with families of autistic and autistic people. And I think it's really important to think about the role of autistic and neurodivergent children who are technically eligible for food assistance, but still can't access food that their children can actually. I also want to share that I'm autistic myself. I think that's an important part of this initiative. Having the lived experience has given me insight into the very real ways that the world can feel unpredictable and overwhelming. And that's what inspired the idea for this initiative. It also underscores why it is so critical to shift to a strength and fitness program. And I think that's really important. It's a shift to a strength-based lens and autism work. One that recognizes that people with lived experience often are the experts on what we need, including those voices at

088the table, isn't just valuable. It's essential for creating systems that truly support autistic individuals. For many autistic individuals, eating is not just about nutrition. It's about safety, predictability, and regulation. They often rely, we, we often rely on safety. We often rely on safety. We often rely on safety. We often rely on the right foods. We often rely on the right foods. These are the foods that are consistent and familiar every single time. These might be beige, crunchy, or brand specific, like goldfish crackers or a certain mac and cheese that always tastes the same or a sour gummy. That's for me. I often use the goldfish versus blueberry analogy to explain that. A goldfish cracker tastes the same every time. It's the same shape, texture, flavor, and color, especially if you've got a kid that's going

089to tell you that they only like the cheddar kind, right? kind, right? Which is typically what happens with kiddos like me and people I'm talking about. So that is very predictable. Blueberry on the other hand changes. Sometimes it's sweet, tart, firm, sometimes it's mushy. And for someone whose nervous system is already experiencing the world is unpredictable. That kind of variability can be overwhelming. We can all relate to comfort items in our own lives, a pint of ice cream or grandma's chicken noodle soup. These foods bring calm because they're familiar and predictable. For many autistic individuals, food is one of the things that can provide the same sense of safety and regulation. That is why having access to safe food can literally be the difference between eating orally and needing a feeding tube. And I speak

090to this as someone who has a teacher who has had children with autism. in my care who have needed feeding tubes because there are diets. It's also why safe foods are tightly tied to regulation and behavior. When a child doesn't have foods they can rely on, it affects their nervous system, their emotional state, and their behavior. The Basebox initiative is about raising awareness of this need and partnering with established food pantries and organizations. Here in Western New York, I'm going to be partnering, my first partner is Sensational Fun, which is a non-profit here. Our goal is to identify, collect, and distribute safe foods while also educating people about why this matters. We're not creating a new system. We want to help make existing systems more inclusive, trauma-informed, and neuro-affirming. Awareness and understanding are the first

091step. My hope is that people will maybe go to my Facebook page and see what the Basebox initiative is all about and start an initiative in your area. If you want to email me, I'm happy to provide you with educational information to share with pantries in your area. I also wanted to share a brief update on the DIR Floortime Bill, which is very close to my house. As a reminder, the Floortime Bill is a developmental, individualized, relationship-based approach that supports children through playing connection. I know we spoke about the bill or I've spoken about it before, and right now it's really had a lot of movement, three-quarters of the assembly members on the insurance committee. The bill currently has 23 sponsors, eight in the assembly, and continues to be. Are you guys letting me share

092this? My hope for me is that we can continue to raise awareness, build partnerships, and include this experience in every step of what we do, particularly while we're navigating autism and a little bit of not predictable, not just food, but to the predictability, safety, and safety. Thank you. You're doing some amazing work, and it's really good to know about this. I heard you say that if people have questions or if they want to take advantage of either one of the initiatives and do something in their area, that they can get in touch with you. Yeah. Excellent. Anybody from the advisory board have any comments, questions for Kate? One. I think it's important that we just talked about this because I think it's important that we talk about this because it's important to have a conversation

093with the community. I think it's important that we talk about this because it's important to have a conversation with the community. I think it's important to talk about this because I know me, like food and texture, and anyone who's known me since I was a little kid knows the reason I never had vegetables, like lettuce and stuff, is because the texture is unbearable for me. So talking about food and texture, it's something that's not spoken about enough in the community. And I can imagine that a lot of other people on the spectrum and a lot of family members of people on the spectrum can probably relate to this one, that with focused safe foods and all that, It's definitely something which isn't talked about. I don't think enough, but it's really good to bring this

094up. Agreed great point. Thank you Josh for sharing your own experience. Any other questions or comments? All right. Thank you. Kate. Um, I think at this point in time, if there's, are there any other folks? Oh, I'm sorry. Charlie Charlie. You also. Wanted to to speak? Yeah, I appreciate it. I just, um, I. Put some brief, prepare comments together just so I stay on track and really help stay focused and explain their vision. Clearly, so this is based on over the past year through both my experiences with my son, Steven, and countless conversations with families and providers. I've seen a growing concern that individuals living in certified housing often have little or no real choice in how they spend their days. Too often their only option is the day program, attached, to their residents while

095these programs are filled with caring staff, they can be repetitive, isolating and often disconnected from each person's interests or strengths. And the results are pretty predictable, especially in my son, individuals disengage behaviors, increase and staff becomes overwhelmed trying to manage challenges that might not exist in a more fulfilling setting when people are giving choice and variety, whether it's music, animals, art, volunteering or physical activity, everything changes behaviors, decline, engagement improves staff, morale rises and everyone really benefits. From an economic standpoint, that's not about new spending. It's about using existing resources more effectively. Every individual in certified housing already already has funding for day program. Allowing that funding to be used flexibly more traditional part part, traditional day have part individualized community activities can actually lower. Total system costs. By reducing behavioral incidents and expensive crisis

096interventions. Improving staff retention and lowering turnover costs. And producing stronger long term outcomes that reduce reliance on higher cost services. This really is an efficiency. And outcomes issue, not a budget issue. That's why I'm asking that the board take a leadership role. By recommending pilot a flexible. Person centered day program, model for individuals and certified housing. And I'm also proposing that we establish a day service innovation subcommittee. Under this board to collaborate with and. And provide a partners on designing this pilot. If we can make this change, we can directly improve the daily lives of thousands of individuals and families. And make New York a model for compassionate cost effective innovation. So, thanks for letting me share those ideas. And I think this is certainly. Impactful for so many families that are in certified housing

097that need opportunity and need choice. That they just don't have today has had subcommittees. We had 1 on housing. Few years ago, and you, you were proposing specifically a day services innovation committee is what I heard you say, and I'm certainly very open to that and having people who would be interested in joining you to have a conversation of what would that look like? And how could we have a constructive conversation in order to. Present some ideas to the agencies. So, so I'm, I think that's what we should do is set that up. And I think I see at least 1 hand up. From a member of the advisory board. Oh, Steve, are you referring to me? Yes. Steven. Okay. Yes. I wanted to address this seems to be quite a big issue with Medicaid.

098Um, people not being able to get through the Medicaid. Um, and April, I turned 60. 5, which changed my Medicaid status and I had to set up a pool trust, which was set up by May. There were several attempts to fast the, uh, put the trust. Documents to the local Medicaid office here in New York. And 3 times over 2 months, it was taxed. They never said claim. They never received it. So, I went with my care coordinator at 9 o'clock in the morning. And personally dropped off the documents have received for it. And since from the, from, like, May to now. No, 1 has been able to get through the Medicaid. I've called and on hold for hours, my care coordinators, they have a care coordinator, self, their own telephone number. They can't get

099through and it's not just me. No, 1 can get through to Medicaid people in my case. It's the, the, the. Um, I, I've lost. Self. and other waiver services, at least temporarily, other people who have completely lost their Medicaid, no one can get through. Yeah, so I think you may not be alone in people having challenges with the Medicaid paperwork and redeterminations and all of that. I'm wondering if we have ideas about what ways this committee specifically could help with that issue. Well, actually, right around the week we had, I think in April, we had one of these meetings and I asked about, because there was concern with the new administration that things like this might happen. And we were told, I asked if there's a contingency plan. We were told that in May, there'd

100be a contingency plan and there doesn't seem to be one. Well, I thank you for bringing the issue up again. I am not recalling exactly what was promised at the May meeting. I think I would go back to the minutes and take a look to see, but I think it's important that you're raising it, that it's still an issue. And to the degree that this board can have any impact on that, I'd like to explore what we could do. I'm not sure what that would be, but I appreciate you raising awareness about the challenges that you, and I'm sure many other people are having with the paperwork. It's very frustrating. You know, it's not like I thought, you know, I'm putting in the effort. I'm sitting on hold for hours at a time. My care

101coordinator is sitting on the hall for hours at a time and no one can get through. And we've gone in person. So thank you for looking into it. Yeah, yeah. Let's follow up with you after the meeting. See if there's anything else that we can do to be helpful. Courtney, just to go back, and I'm sorry not to, but are you in favor, of the subcommittee for what we were just, what I was discussing just so I don't, so I close that loop? Yes, absolutely. Okay. I think you proposed it. I'm very open to that. I think we should, via email, find out who on the advisory board would be interested in joining that subcommittee to close the loop on that. Thank you. Kate, I think you had a hand up or. I just want

102to get in touch with Charlie after this meeting about, you know, the pilot program. I want to talk to him a little bit. Sure. And I'd like to be part of that subcommittee. Excellent. Thank you for volunteering. And Charlie and Kate, I'd like to join you as well. All right. Any other items for open discussion from the board today? Okay. Well, this was some really important issues that were raised. So thank you for all those who raised issues today and for the work that's being done in some other areas. So we're going to move to public comments. And normally with public comments, we limit folks to three minutes. We will start with anybody who's in the room. And typically we don't take questions. It's usually just for people to be able to air concerns or

103ideas. And so again, just limit comments to three minutes and we'll start to see if there's anybody here in the room who would like to make public comments. Yeah, well, there's a microphone up here if you want to come to that. Sure. Yeah. Okay. Go ahead. Yes. Well, first of all, I want to thank you. This is the first time I've attended one of these meetings. And it's really terrific. It's very exciting to me to hear what people are talking about. I get very emotional talking about this. I'm both an autism professional and I also have a 35-year-old daughter with very high needs who's in a group home. And so I wanted to make a comment about the subcommittee. I'm going to try to go fast. It may sound like it's contradictory to what Charlie

104said, but it's really not. It just expands it a little bit. And that is that I have found that in the name of expanding residents' ability to make choices, sometimes folks are too quick to allow them to not do things if there are negative behaviors. I know for me, I'm pretty good at helping my daughter to be able to expand what she does a bit, but it takes a little bit of effort. It takes a little bit of time. a little bit of breaking down and it takes a little bit of willingness to go through that process. Unfortunately, the extent to financing in these kinds of settings has an effect on people's training in terms of doing these kinds of things. But so, you know, I would really like to be able to see, in

105addition to providing more choice, to helping people with very high needs and restricted behaviors to expand their worlds, to have more choices without automatically deciding that they're making a choice not to do something. DR. Yeah, thank you. Excellent point. And yeah, and thank you for joining us today. I'm glad that you found out about the advice report. DR. Thank you. DR. Yeah, appreciate the input very much so. Anybody else? I don't think so in the room here for public comments. So we'll go online to see if anybody else has any questions. If not, we have some hands raised. DR. All right. So thank you, everyone. If you are interested in giving public comment, you can virtually, you can raise your hand. So if you go to the bottom of your screen where it has the

106mute button, there is a little hand that you can click to raise your hand. Right now we have two in the room, but feel free to keep raising your hands. And as Courtney said, this is a comment period, so we will not either, no, no, stop. DR. Okay. DR. So we will not be able to hear any questions from the staff and no members of the board will be responding to questions. So first we have Molly. Molly, you are unmuted and should be able to start. DR. Oh, this, I just had a question earlier, but if you're not responding to questions, then. DR. You can put the question in the chat, Molly. DR. I did. DR. That would work. DR. Okay, great. We'll take a look. Next up is Susanna. And Susanna, you're unmuted. DR.

107I don't have a question. DR. Okay. DR. I don't have a question. I already placed my questions on the chat, but since I have the opportunity, I just wanted to let you know that if you'd like help with a Medicaid issue, I actually had to learn the hard way, and I know how to do it. If you want to reach out, I'm more than happy to guide you or give you some hints so that you can maybe help other families. Thank you. DR. Thank you, Susanna. Is there anyone else that would like to do a public comment today? We'll give you another minute. DR. It doesn't look like we have any other public comments. So, as a reminder, we do have our schedule of upcoming meetings for 2026. The meetings will be January 7th, April

10822nd, July 22nd, and October 21st. And we typically try to – oh, here they are on the screen – try to do them from 12 to 2 for anybody who's traveling to give them adequate time to get here and home. So, if there's nothing else for today, this has been an excellent meeting. Really, I love the presentation. I hope you'll have a great day. DR. Thank you, Courtney. DR. Thank you for the presentations today. So, thank you to all of our presenters, and I hope everybody has a safe and happy holidays between now and next year. Thank you. DR. Thank you, Courtney. DR. Thank you. DR. Thank you.