Autism Spectrum Disorders Advisory Board Meeting July 23, 2025

001Good afternoon everyone. Um. People are still trickling in, um, and Courtney Burke, our chair is going to be a little bit late today, but I think we can kick things off. Um, for those who are here, um. Just a quick overview of our agenda for the day. Um, we're going to start with some updates on. State legislation and budget move to some federal updates by our state agency partners and then we'll move into 2 discussion points for the board members a discussion of autism acceptance month for 2026 and then some broader board visioning activities. And then we'll close out with public comment and. Just a quick note on our next meeting. And with that, I am going to hand it over to Greg Roberts to start with some state updates. Hello, good afternoon, everybody. Thank

002you, Caitlin. My name is Greg Roberts. I'm the Director of Legislative and Intergovernmental Affairs for New York State Office for People with Developmental Disabilities, or OPWDD. And I just wanted to take a little bit of time this afternoon and walk everybody through some of the actions taken by the governor and the New York state legislature this past legislative session to address issues that the autism spectrum disorders board have put to the to the forefront. Um, so the initiatives that are listed here are mostly included in the budget legislation, but there are a couple of, uh, standalone, uh, bills that will be sent to the governor for her signature or veto later in the year. Um, so with that, I want to focus on the, uh, 1st slide. Um, the board, uh, had a, uh. Resolution

003to strengthen and maintain the direct care workforce. In that regard, I can report that in December of 2024, the rebasing funding from the budget adopted in April 2024 was released that provided 850Million dollars in state and federal resources for certified residential programs and day programs. This funding was retroactive back to July of 2024 and then the state budget that was recently adopted in April added another 351Million dollars. Um, to the, to the rates for our providers. Um, so since. 2022, um, the state of New York has made more than 4Billion dollars available to our nonprofit providers to support investments in the workforce and to help them, uh, address rising costs. The next slide please. The state budget also provided 120Million dollars to meet the needs of people who are new to the system and to

004meet the changing needs of people that are currently in the system. Um, 15Million dollars was included to support the development of independent housing opportunities. And these funds are typically committed to development projects where a percentage of the units are set aside to be rented to people, developmental disabilities. Since 2016, 155Million dollars in capital spending has been used in this matter. And I want to point out another piece of legislation that helps with the boards direction to help support people living in the community. And there was a legislation that passed hasn't been sent to the governor's desk yet, but it would. Expand the current police officer training. Uh, so in 2018, I'll back up a little bit. So, in 2018, a law required state and local police agencies to adopt procedures regarding handling of emergency situations

005involving individuals on the autism spectrum disorder. Um, and, um, developed a recommended curriculum for that program. So this new bill, if it's signed, it would expand that law to require police officers to receive training on deescalation techniques for people on the spectrum. We move on to the next slide. So in the area of supporting people living in the community in the employment field, there's some good news there as well this year. Um, the, uh, executive by the governor proposed and legislature accepted, uh, increased value in the tax incentive program for employers that hire people with disabilities. That exemption is going to, uh, increase from, uh, 2100 dollars to 5000 dollars. The budget also extended the workers with disabilities tax incentive program to qualified employers who hire people who are transitioning out of sheltered workshops and

006into regular employment. And that funding stream was extended until 2028. And I'm happy to say that the preferred source program was also extended in the budget for an additional 3 years. That program allows New York state industries for the disabled to be a preferred vendor for state contracts. And that legislation also extended the requirement that 50% of the work being formed with. People with developmental disabilities. And another bill that passed has not yet been sent to the governor's desk, but it would create the integrated employment task force. This task force would be under the Department of Labor. And would consist of appointed members from multiple state agencies, and it would be charged with sort of promoting a competitive integrated employment. For people with disabilities and, uh, issue report every couple of years. Um, and I

007do want to say, uh, it's my understanding that a lot of this work is happening currently between the agencies. Um. So, I'm saying that the state agencies don't necessarily need to be directed to do these things to work together. And and that's, I know something that the board members really wanted to to focus on. Another board recommendation was to improve health equity and access to health care for people on the autism spectrum. So I am happy to give some exciting news. So the governor proposed and the legislature accepted a 25 million dollars in one time capital funds to establish regional health clinics that will enhance access to health services for people with developmental disabilities. Now, this program is currently it's going to piggyback on the current, uh, department of health program, um, to provide capital

008funding to some of these regional clinics. But will be allowed to select about 25Million dollars upgrade specifically for people with disabilities. Uh, and these, uh, typically could be used for a lot of things, um, and other, um, uh. Physical plan infrastructure upgrades are what we often hear, uh, are sort of obstacles to accessing health care. So that could be, um, very helpful for people in the future. Um, on that same line, um. Uh, regarding access to health care, I would do want to flag a couple of other pieces of legislation for the board. Um, earlier in the year, uh, chapter 48 was signed by the governor and that contained technical technical amendments to a new law. That requires general hospitals to determine whether or not someone needs a reasonable accommodation for a disability while they're

009at the hospital. And so we think that's a really good step. So there is a new bill that was passed, uh, has not made it yet to the governor's desk, but, uh, if signed by the governor, this would expand that law. Um, and it would allow a parent guardian or support staff to stay with a person in the hospital. If they're deaf. Part of hearing, or if they're nonverbal until a hospital provided qualified interpreter or other qualified, um, person is assigned to the, uh, patient to help with their needs while they're in the hospital. So, um, you know, this is kind of exciting news that sort of the whole health system is, is, uh, uh, focusing on this issue of making health care accessible to people with developmental disabilities. Another is, uh, directive that the

010autism board had given the state was to try and increase collaboration between state agencies. Uh, and there's a couple of, uh, pieces of legislation that would aim to. To improve that, um, Governor recently signed chapter 168 of 2025, which extend the authorization of, and to, um, provide applied behavior analysis services. Until 2030, uh, and the budget agreement also extended for 3 years, the ability for, um, and to develop new methods of services through joint demonstration projects. Um, you know, the board had asked, uh, that urge the state to focus on ways to enhance communication and raise awareness, uh, in combat discrimination. Uh, and there's a couple of, um, a couple of things I want to point out there. Um, so members of this board have frequently spoken about the importance of language and words and

011how New York state government should lead by example. So, legislation passed both houses this year that would eliminate references to emotionally disturbed person, um, throughout New York state law. And the governor's budget proposal also included funding to transform a building on Staten Island's Willowbrook campus to recognize the historical significance that the former residents of Willowbrook and their family advocates had in sparking New York's disability rights movement and influencing the disability service system nationwide. So it's going to be a learning center. So people can learn about Willowbrook in the history to make sure that not only we not forget what happened back then and make sure that people are treated appropriately and integrated in the community. So that's just really important. It's also the reminder is just critical. And, um, 1 more thing I want to

012point out that is very exciting is the, the budget this year included 75Million dollars for over 5 years to upgrade the physical infrastructure at the Institute for basic research or, which is a research facility operated by at the former school campus on Staten Island. So this funding, it's the largest single financial commitment to since it was opened in 1968. And some of this money will be used to develop a genomics core facility. And to explain a little bit more about what that is, I wanted to see if Dr. Pettinger from OPWDD is available, and she can provide a few more details of what that might mean for people on the spectrum. Good afternoon. Yes, thank you. Sorry, Michael? I was just letting you all know I was here on virtually and I'm on my way

013there. Awesome. Thank you. Sorry to interrupt. Go ahead. Okay. Dr. Pettinger. Hey, good afternoon everyone. Yes, I want to follow up and give a little bit more detail on the. 75Million dollar proposal to modernize the facility, which really represents single largest financial commitment to in our state's history. So this is really exciting news. It's funding as Greg reference is going to allow for renovations. To several of our existing buildings on the site of the greater campus, ultimately providing modern laboratories, a genomics core facility of, which is a laboratory animal resource center, tissue sample storage facilities and importantly, a modern welcoming diagnostic and research outpatient clinic. So, clearly, these are long overdue investments to really just modernize and update the facility at IBR, which has been there for several decades. So, this investment, the New York

014State in genomics testing and research is also really timely. As there are increasing reports in the national and scientific literature about the impact of the currently available scientific genetic testing abilities and the results being obtained, which can and are having a significant impact on improving the quality of life for people living with various types of developmental disabilities. By pinpointing exact variants and specific genes, we'll be able to gain a new understanding of the genetic factors underlying a person's condition. And this is really the first step in understanding the biological mechanisms that may underlie a person's disability and will allow for improved diagnostic accuracy for people with developmental disabilities and their family members. Until recently, as an example, people diagnosed with autism spectrum disorder were placed on a spectrum with little knowledge of the underlying causes

015of their condition. As we identify new genes and confirm their contribution to a diagnosis of autism spectrum disorder, the intricacy of autism spectrum disorder and the need for comprehensive genetic analysis will be reinforced. And I'll give a couple of examples. Some recent studies of a cohort of children presenting with different developmental disability diagnoses who had genetic testing completed helped to either confirm a previously diagnosed genetic condition that may have been based just on physical characteristics and a physical exam, but the genetic testing was able to confirm. or it also revealed a likely rare genetic condition. So, based on this new information in that study that I'm referencing, 70% of the evaluated children were then referred to cardiac, gastrointestinal, and other specialists to investigate the need for possible medical therapies or treatments to address other health

016conditions that were identified. And a number of these diagnoses resulted in changes in prescribed medications. or referrals to clinical trials that specifically address the child's identified health needs. So again, that's allowing for a much more proactive engagement around healthcare and treatment and interventions for those children, ultimately to improve the quality of their life and their health condition. This type of advanced test results has led really to a subsequent cascade of genetic testing and really having a better ability to engage in ongoing medical surveillance for known disorders and other comorbidities such as seizures and cancers. The findings of several studies also show genetic testing can lead to more individualized care. And the studies have also emphasized how clinician training must also include genomic medicine. So, through psychiatric fellow programs that we operate in conjunction with downstate

017medical center, the next generation of clinicians are being trained to treat the developmental disability population more holistically, including incorporating genetic testing into their treatment plans where it's indicated. We also know that based on these studies that a great need exists to address the disparity of increased genetic testing that has really been made available to younger people because it's been a more recent development and available testing has been more broadly used for younger people versus older adults that we may be supporting who have developmental disabilities. So, the other work that IVR will be able to facilitate is collaborating with the adult medical providers in our community to facilitate genetic testing when and if it's clinically or medically indicated for adults with developmental disabilities. Again, to identify potential genetic conditions or syndromes that may underlie their developmental

018disability and enable them to benefit from advances in genomic medicine to inform additional medical surveillance, management, and treatment of what may be underlying health needs that they're experiencing. Through our clinical practice, we're also going to be working to take a genomics-informed approach to neuropsychiatric care, which has proven to affect medical management across many domains. This investment in developing a state of the art and modern research facility in Staten Island will also attract the participation of new scientists and clinicians and make IVR more competitive for grants and resources that will really facilitate life changing work to improve the quality of life for people with developmental disabilities. We're looking at potential collaborations with organizations such as the New York STEM Cell Foundation and the New York Genomics Center. And exploring multi-state research protocols and sequencing cases will

019be discussed and initiated. Again, all focused on better understanding of underlying conditions and working towards achieving improved health outcomes for people with developmental disabilities. So, again, I'm giving you some ideas of what this investment in will allow us to to begin to do and at this time we're proactively engaging in the development of interim plans to frame how the IBR Jervis clinics can be used to build out genetic testing access across the New York State OPWDD population. And this will require the development certainly of policies and procedures for outreach methods. Informed consent, vertical data collection and many other things. And this is very much in the beginning stages. But once we can engage in formal outreach and testing opportunities, this will really inform and enhance the development of the IVR genomics core facility that this

020budget investment does contemplate. So, as you can imagine, this is a multi year undertaking, starting with that investment in the physical plant. And starting to look at research opportunities and research protocols, and I will hope to come back and share more information as we continue to develop this framework and plan going forward. Greg, I hope that was the type of information you were looking for and I'm certainly happy to try to answer other questions if they should come up. Yeah, thank you. Dr. Pettinger. I think that was perfect. Do any of the board members have any questions on any of the state budget? Legislative updates we've had seeing any hands online. So, I think I'll move us to our next section, which is just. A quick round table on federal updates. Um, the way we're

021going to do this is have, um. A quick go around for each of our state agency partners to give a brief update on how their agencies are responding to the current federal landscape. Um, I'll just our partner couldn't join us today. So their quick update is that they're currently analyzing the effects of all the federal changes, um, on their service system and are hoping. To have answers soon. I think I will just go around to start with the people in the room. So, Greg, would you lead us off? Yep, thank you. Caitlin. Um. So, the make no mistake of the recently enacted, uh. Federal reconciliation bill will impact services to people in New York state. The current New York state's current financial plan assumes a federal match of nearly 7Billion dollars to cover the 13Billion

022dollars and anticipated costs. This year for the service system. While we haven't identified specific cuts to funding streams to know how that exactly is going to impact us. We do know that there are significant cuts to health care and other benefits that will have significant impact on all on New Yorkers, including people with developmental disabilities. For example, and the Department of Health might go a little more detail on this, but overall, the health and hospital systems are going to take approximately 13.5 billion dollar cut. That's going to put about 1.6 million New Yorkers at risk. Now, people with developmental disabilities, you know, everyone here on this meeting probably is aware, but health and dental care for people with disabilities is already hard to find in New York State, and it may become even harder to

023identify medical providers who are going to be willing to accept Medicaid and have the ability to meet people's needs, particularly in rural areas. I also want to point out that there is roughly 300Billion dollars in snap cuts nationally, uh, endangering benefits to over 300,000 New York households. Um, we are also expecting additional significant cuts in the home energy assistance program heap. And, um, which is the temporary assistance for needy families program, and that's ultimately going to affect many New Yorkers with developmental disabilities and their families, uh, who rely on these, uh, rely on these services. Um, and something else of note, uh, for, uh, Medicaid recipients, uh, is eligibility determinations, uh, must will have to be conducted every 6 months. Um, and that's going to apply to, uh, for. Medicaid expansion adults, and that's going

024to apply to people rescheduled after December 31st of 2026. So that's the. Update once again, we're not exactly sure how the funding streams are going to impact us, but we do know that there will be. Less money available. Thank you Greg. I think we'll just go right around. So, Chris, do you want to go next? Thank you. Um, Chris, from the, um, New York state education department, the office of special education, um, at the federal level, there was no real impact to the individuals with disabilities education act, the grant programs and the funding that the state education departments office of special education overseas. New York received its initial IDA allocations this month and expects to receive that final allocation amount as scheduled sometime in the fall, the fiscal year 2025 grant award level for the

025part B 611. Program, which is the, which is the school age funding. It decreased slightly. However, it's still at the typical level that we would expect to receive the idea part B, 619 program, which is the preschool program for fiscal year 2025, which is the new allocation. We just received that remained at the same level that we received in. 2024, so the good news is that, um, there really were no changes to the method of how the award or how the funding is being allocated to states. The office of special education are required roles and responsibilities as well as all our scheduled projects and initiatives are proceeding as as planned this current school year. Um, and school districts will receive their idea grant allocations from the state consistent with how it has been allocated in

026previous years. So good news on the front, um, the state education department is though also closely monitoring the U. S. Department of education's review of the various title funds under the elementary and secondary education act. Currently, though, good news is that New York public schools are funded through August 31st, 2025, pursuant to a continuing resolution adopted by Congress. Therefore, all of New York's summer school programs and those summer programs were unaffected and are proceeding as they have in the past and or have the How they've been scheduled, we encourage, um, we are strongly encouraging school leaders who are concerned with the delays in those title 1 fund grants to be contacting their congressional representatives. And just recently, um, the Council of chief state school officers, um, did develop a new, um. Guidance resource, which we

027just received it's for strategies to support while the, the elementary secondary. Um, education act formula grants are being, um, remain on awarded. So, how can how can state agencies support their public school districts? Um, it really outlines very concrete steps that, um, state agencies, like the state education department. Um. Can take can take to help local educational agencies, sustain those essential services to students. So we'll be there's going to be a webinar, I believe on. July 24th, which we will participate in to you really hear about those strategies and ways to support districts funding for the vocational rehabilitation is is again reported to me as as as as fine. However, I do want to note that the adult education funding. Um, is facing significant cuts, so more to come and we continue to monitor it

028and and advocate where necessary. Thanks Thank you. Chris. I think we'll go to Mila. Myla Harrison from the State Department of health. Thank you for this opportunity. Can you hear me? Okay. Um, so I. Also, and the psychiatric medical director on the Medicaid team at the State Department of health. And from a federal perspective, I don't think I have any. Good news to share the budget reconciliation act signed into law as you all know, July 4th, 2025 had key provisions related to health care. That includes Medicaid child health plus and the essential plan. So, right now, New York currently has about 95% of our population insured that will likely change over the next coming years and it won't be immediate, but there are true federal spending reductions cuts to Medicaid revisions to the affordable care

029act basic health program, which is the essential plan. And these changes, in addition to some of the eligibility changes, um, will lead to expected reductions in coverage. So we don't have all of this worked out. Um, we do know and Greg mentioned this already. There, there are major cuts. There will be major cuts to hospitals and safety net providers. There was an analysis by the greater New York hospital association and the health care association of New York state that estimated that at about 8Billion dollars for New York. We know there will be new work requirements for a certain population on Medicaid, and that's the adults 19 to 64 without dependents. There will be work and or school and or community engagement requirements. There's an anticipation getting reverb. Sorry. There's an anticipation. That we may lose

0301.5Million people over a multi year period because of those requirements. That's not due to start till December 2026. I think I heard Greg mentioned it as well. There will be eligibility checks every 6 months for the expansion population again. That's adults with incomes in the 100 to 130% 38% of the federal poverty line level. Who are childless right now we currently have 12 month intervals. So, again, um. We will likely see. Challenges related to that that's not due to start until January 2027. There will be required cost sharing for certain individuals under Medicaid and, um, 1st, for those also, um, who have been expanded through the affordable care act. Uh, there will be some exempt except I can't speak exemptions there as well for certain clinics that cost sharing is not going to start until

031October 1st, 2028. That means when you go to your doctor, you may have to pay some minimum amount of money to see the doctor, which we do not require in Medicaid at this point. Um, there are also shortened retroactive coverage period. So currently retroactive coverage goes back 90 days, and it will either go back 60 days or 30 days, depending on the population. Uh, there are also restrictions in. what's called the managed care organization tax as well as the provider tax and these taxes have enabled new york to allow for increased services for the population because of these restrictions there will likely be some significant cuts that will have to come the New York state Medicaid managed care tax took effect in January of 2023 and it was estimated that it would enable 3.7Billion dollars

032over 2 to 3 years for services. That's going to be the most immediate risk to federal Medicaid funding. Let me think if there's anything else. These are high level, but not that high. There's going to be some new criteria for what we call the 1115 waiver, which is Medicaid waivers around managed care that will. Come upon our renewals in 2027 and, uh, this. This act is budget reconciliation act also banned Medicaid reimbursement for providers of abortion services who receive more than 800,000 dollars in Medicaid funds, which essentially means an impact to Planned Parenthood. So that's very high level. What's to come again? It's it's phasing in so it's not going to all be an immediate impact, but it we will be seeing impact over. The next 5 years or so. Thank you. Uh, we're going

033to transition to people who are online now. So, Chris, with council and children and families. Chris to start with the council on children and families. I would like to share that the council is a little different than many of our sister agencies participating on this board. We do not provide direct services. Rather the council's mission is to support children and families by providing. a comprehensive and cross-systems perspective to better understand and inform policies to help ensure the availability, accessibility, and quality of services. As we do with all our work, we are applying a cross-sector and a broad lens in our monitoring of federal changes for the impact on children and families. including the cuts to Medicaid, SNAP, and access to health services for individuals with disabilities. One additional thing that I would like to mention

034is that my office has several federal grants that are focused on building connections between the child serving systems and with the ongoing attempts by our federal administration to cut health education and social services programs. We really see our collaborative work as more essential than ever. And while our grants currently remain intact, we remain vigilant and For example, my office is responsible for administering the Head Start collaboration project. This project is responsible for keeping Head Start programs, programs that are responsible for serving some of the state's most vulnerable families with young children. And we're working on informing those policy changes. My office has been working closely with the office of the governor and the attorney general to protect head start. And during these times, we're just especially grateful to be living in a state where our

035governor has repeatedly expressed her commitment to protecting all residents. Thank you. Thank you Chris, um, I don't see Kristen proud online from. So, I think we'll move to Kim Perry with. Hi, everyone, my name is Kim Perry and I work for. I'm 1 of the directors of the Bureau of children's Medicaid management. Um, and I don't have a lot to add. Everybody has, you know, really. Outlines also things that are affecting everyone. So I will just let folks know that is, you know. Evaluating how the federal changes will affect all programs and services, and we're working very closely with our sister agencies to make a plan for to determine next steps. Thank you. Thank you. That takes us all the way through our state agency partners and I did just want to welcome Courtney Burke,

036our chair who's with us now. Thank you. Thank you. I think if there's any questions from board members about the federal updates, now's the time. Can I ask a question to Greg please? Yes. Hey, Greg, it's Charlie Massimo. How are you? Hey, doing well, Charlie. Good. Good. Well, Governor Hochul can't stop the federal cuts. She may have strong leverage to protect OPWDD. Through things like emergency funding, legislative action. Uh, rate reform and advocacy, and I'm just wondering if there's any discussions there on governor plan to help protect. Um. Many of the agencies are working through contingency plans now. Um, it's my understanding of last week, for example, Governor did hold a cabinet meeting with, uh. Many of the commissioners and state agencies and agencies are asked to being, you know, to look at their systems

037in the impacts and to see what options might be available. So, um, there's nothing concrete yet Charlie, but, um. All the agencies, including are meeting to look at see what contingency plans we might be able to put forth. Um, so there's still more to come, you know, as as it goes through the system, um, as, as, uh. Department of health, smiley Harrison had said, um, we're, they're still trying to figure out. We know this reduction in cuts. How is that going to be spread across the state? How that's going to be spread across the various agencies is still still kind of up in the air. There's also, you know, the federal budget do September 1st or excuse me September 30th October 1st of this year. Um, so there may be some additional changes coming there.

038Okay, great. I appreciate that. Thanks Greg. Steve, did you want to go ahead? Yes. Um. I want to address there's an issue with, I don't want to get into the politics of it, but. There already have been cuts to H. R. A. offices and that affect. Well, medicare for sure, but a lot of other funding and services, so people are not I did not receive any mail. From H. R. A. on my Medicaid or any of my others. Funding or services, and I lost my Medicaid temporarily. But why was it because I became 65 I had this my Medicaid was switched to spend down without them. Letting me know, because no mails going out. And so now I'm setting up a pool trust and all the things you're supposed to do ahead of time. But

039there's no notifications. My care coordinator has told me that. A lot of people are just losing their Medicaid with no notice whatsoever. No one's sending an email. There's no one calling. There's no nothing. Thank you for sharing that story, Steve. Any other questions or comments? Okay. I think with that, I will turn it back over to Courtney for our discussion of Autism Acceptance Month 2026. And I know a bunch of the self-advocates are interested in. What we're going to be doing next year. So, yeah, great. Thank you for this. I wanted to put this on the agenda to follow up from the discussion that we had at our last meeting, which was during April acceptance month. And a lot of folks weighed in on their thoughts about how we could make it. More person centered,

040certainly more aware of some of the views of those with autism. And so I think we want to go through a number of the changes that are resulting from that and what some of the plans are for autism acceptance month in 2026. So I'll hand it back over to you. Yeah, I think this is intended to be an open discussion period. Um, 1 of the things that got talked about at our last meeting was the Plaza being lit up blue and the self advocate preference to use red, white and gold. Um, and potentially do a. Wider more thought out statewide plan for. That month, instead of the 1 off day activities, so. I might turn it over to Josh, who I know has thoughts on this. Yeah. Hi. Thank you. Caitlin. Also. I know I've

041bombarded you with a lot of emails. Um, I know I'm rather persistent, but I'm just very passionate. So. Yeah, in regards to the lineup, so I went off in April to let towards the park for a raising of the neuro diversity strength, like. And during that, I spoke to Willow and the 2 disability officer afterwards, they were both present and 1 things we spoke about was, hey, why don't we light up all the state landmarks? Red white gold. Because of the neurodiversity strength flag, I'm like, yeah, that's very good. Since then I've had letters to support for this initiative, both in federal and state level. To the governor from former Congress, current Congressman Tom swazi. Assemblyman Chuck Levine, I have 1 coming from state center, Monica Martinez. Who nominated me to be on this board

042years ago great person and amongst other people as well. So, we have lots of great support. I believe I was talking to the commissioner. I think she said she would put a good word at this. If. This board makes a recommendation, an official recommendation to the office of the governor that we light up all of the state landmarks in the cars of the neuro diversity flag. We're not going to strike like red, white and gold. I think this is incredibly important for several reasons, including the fact that, as we all know, especially those in the autism community, I want to speak directly to those in the autism community here and the ones who are listening at home for this. For untold number of years. The Autistic community has been somewhat oppressed in the way that

043April has been lit up blue. Blue does not represent the Autism people. It represents a nonprofit organization that claims to speak for us, who's proven in the past to be ableist and quite frankly has hijacked our month. Autism communication disorder, so we've had as a people a hard time expressing our displeasure with that. We were prime to be victims of have our month robbed in that case. Now we have a chance to finally take it back. We, if we vote, yes, to do this. We can find them step to saying it online that all please don't like a blue. We can actually put action to that. For the 1st time a state. Anywhere will not light up blue, but light up in our colors red, white and gold. This is extremely important. I wrote Caitlin,

044if I can read this a letter to the government myself. It'll take a couple minutes. Can I read it? That's okay with me. All right. Great. All right, so dear Governor Hochul, my name is Josh Marske. I'm the creator of the Neurodiversity Strength Flag, the ambassador of the New York State Autism Spectrum Disorder Advisory Board, and an OPWDPR specialist. I'm writing this letter to you today. This is an open letter, by the way. Writing to you this letter today, not just on behalf of the state board, but on behalf of at least 90% of all New Yorkers on the autism spectrum. During the month of April, 2025, the state made a historic step in the history of not just autism, but all neurodiversity. The state raised in multiple locations the neurodiversity strength flag. This flag

045that sports the colors of gold, red, and white is a source of great pride in the community. This is for many reasons. However, I wish to highlight only one for the purpose of this letter. For decades, the autistic population has fallen victim to the greatest public robbery in history. That robbery was our collective voice. To be completely frank with you, Madam Governor, our collective identity has been for far too long hijacked. This has been done by an organization that uses a blue puzzle piece as its logo. As I'm going to be completely honest, for fear of backlash from this organization, if this letter is leaked, which it is now, I'm going to abstain from using the name of said organization that claims to speak for us. However, it should be very apparent on whom I

046refer to. For decades, my population has had to stand idly by as an organization who in the not too distant past Referred to us in the same way RK Jr. refers to us. Would state how my population causes families to divorce, but we are a burden to the family unit, etc. For decades, my population, a population who struggles to communicate, has been forced to watch an organization who engages in extremist, ableist activities, pretend in the public to have our best interests at heart. For decades, we autistic people have lived under the proverbial jackboot of this organization. Then a sliver of hope. The month of April was relegated to us. Many found great hope that this would truly be the month of the autistic. Our last April was hijacked and stolen from us. Doused in blue

047lights, our voices were silenced. For proof of this, you need only to ask us, your autism boy. We are a tiny sample of the voices who have been silenced by the blue jackalope. Then in 2021, I came up with the idea for the Neurodiversity Strength Flag. I would like to now, if I may, share with you a major reason I made this flag. To put it bluntly, I was sick and tired of my people being ignored. For always in the comment sections online and online forums and in person, people cry out, they stole April, light up red or gold instead, please don't use the puzzle piece, and mainly, don't light it up blue. Now these comments, although a lot came from New York, many came from across the country and across the globe. Really, it's

048that big of a deal. I wanted to show my population that their voices are being heard. Now I wish to state, before I go any further, that when I once met you, when you were lieutenant governor, you came to Port Washington to a print shop that I worked at to hire autistic people. I was there that day. I saw in your eyes that you genuinely cared about my population. I celebrated when you became governor for this very reason. I'll ask to discuss our state motto is that we are the state of opportunity. And as I believe you once stated, the world follows what New York does. As the neurodiversity strength flag rising in April, both the chief disability officer and the commissioner of OPWDD suggested that instead of blue, the state should light it up

049red, white, and gold. The colors of the neurodiversity strength flag. This will be the first time in history government shows that they truly hear and genuinely, genuinely respect autistic people. When I stated this on TikTok and many other places, there's just a massive positive feedback. Many folks literally broke down in tears of joy over the possibility of the state actually recognizing the wish of the autistic population. I wish to say also that if New York does this, the rest of the nation will follow. You governor will be known throughout the population as the governor who actually heard the population. Is on this note through this letter. That's that if you guys approve, it has been approved by the autism spectrum, the source advisor board, which I think you also vote yes to that. I formally

050request the state of New York to immediately hope the light up blue campaign and begin the inclusive light up red, white, gold campaign. We also, and I think you all would agree with this. We'd like to present you governor. With a neuro diversity strength flag for your office. I asked the creator of the idea design would like to present this to you personally. Thank you for your time and thank you for hearing us. Thanks Josh for for sharing the letter with us. Um, and I wanted to just see if there are other members of the board who would like to to weigh in and whether we want to make any type of statement, uh, further than what Josh has read. Oh, yeah, so, um, and I can really speak about the power of this light

051it up stuff going on at especially empire Plaza. Um, every March, they like empire Plaza up red for red cross day. And, uh, we actually did a photo shoot, so they did it all over the state and it was huge rallying cry of all of our volunteers. And it was really powerful and it really shows, um, you know, featuring our volunteers, the people that, you know, people don't know who's the Red Cross volunteers that are going to fires and stuff like that. And it is really important this representation and to do it right. And just the power that it brings to that community, you know, so if we do light it up red, white and gold and. being able to get that out there, it does have a worldwide effect. The International Federation picked up

052our photo in New York State and shared it all over the world. And it's really important that we do this because this could be the turning point where we really start to bring up the voices that have been silenced for so long. I mean, you know, just hearing every month, most like April is the worst month because you hear about how much you're a burden and all the other stuff. And I'm like, wait a second. I manage complex disasters. I'm a firefighter. I'm an EMT, you know. I'm a lifeguard instructor trainer. Like, I do all this stuff. I own my own home. I now own my own business. But you just keep hearing this burden speak. And people don't see, you know, kind of the effects on the person because I'll be honest, we hide

053it. Well, we're used to masking. We're used to being suppressed. And it's very important that we really make sure that we bring this to the forefront and we can actually, we have a flag to rally around. It's powerful. We have colors. We could show New York state. We could be that example to lead the charge. So, I highly recommend we do, you know, we do approve this and that it is very important and make sure that we focus on. The individuals. And give us that voice and do things like have photo shoots stuff like that, where we can tell our stories in our own words and not have other people speak for us. Very well said any other any other thoughts. Plan on doing this taking action and like the photo shoot I do too.

054So, what are the next steps from here? Courtney, it's Michael Gilbert. Can you hear me? Yes, Michael, go ahead. I will just say, I understand and look at it's been a long time that people have said switch from blue nationally. What I've heard most people say is red. I don't think most people know about this red, gold and white, especially outside New York. And I do think the tone of Josh's letter is a bit aggressive, a bit more aggressive than I would like. And trying to bring people together. No, I appreciate that. I think what I would propose is not, I mean, Josh is free to say whatever he would like. He said he already submitted the letter. I think from our. Submit that 1. I'm way on the board. No, what was submitted. Was

055letters from members of Congress. Former members of Congress. Members of the assembly 1, may have been sent from members of Senate. Also, some other stuff, which is some works, which I mean, I'm not going to fully, but I have legislation works currently in Congress. I have legislation going on, like, I have tons of stuff going on. But those have already been submitted those have this. Was so much like an open letter. So, you know, she watched that. She hears it. If not, you know, I'd like to send this, but and about it being a little aggressive. There is supposed to be low aggression. I think a lot of people are absolutely fed up that our voices are being silenced. I hear all the time online, people are fed up. We are primarily a people, we

056have a communication disorder. We have a month and people say it's for us, but it's by something that we dislike. It's shoved down our throats. It's by an ableist. A lot of people are fed up. And I think for far too long, we've had to smile and like, you know, smile, just let it happen. But it's about my opinion, and I think a lot of people I spoke to, it's about time that we show our displeasure. If we're always smiling and happy, nothing will change. Great change only comes by expressing the truth, and the truth is a mass discomfort within our people. That's a major reason why, yes, there is a little bit of aggressive tone there, because we're also talking from a sense of urgency. Thank you, Josh. I think this is Kate. That's

057passion. And I think, again, like what Josh was saying, we're autistic and we have a communication disorder. So and change is hard. Change is uncomfortable as an autistic person. And I don't know about any other autistic people on this board, but change is very difficult for me. And I feel like as an autistic person, neurotypical people have given enough grace. We've given them enough grace. It has been years of talking about how perspectives and philosophies need to change. Like even hearing that, unfortunately I couldn't be there today, but hearing that ABA is going to be continued for the next three years or however much it was when I literally exposed my trauma and the trauma of my family to talk about DIR floor time. And I feel like that was not even heard. So if

058it takes some aggression to get heard, I mean, I don't think I don't know what else to say about it. I'm very thankful to you, Josh. Thank you. Yeah, I understand. You know, some people are not comfortable with the aggression. I respect that. But at least what I've seen again, like for you and so many people online, so many people truly feel and I feel it too, that. You know, people in front of the camera, so to speak, they'll smile and say, yeah, we understand. But as soon as that the camera, quote, unquote, is off, they don't care. And we've been like, we've been begging and pleading for like, even just a simple crumb of the pie. It's time we take a whole slice, if not the whole pie. If we don't do it now,

059it's never going to happen. We can try to play nice and get friends and stuff, or we can be, at this point, or we can be a little aggressive and we can be effective. But history has shown that you cannot combine the 2, not in this case. If you try to combine the 2 blues always get me, the puzzle will always remain. So, Josh, I was thinking that coming from a group like this, something. More succinct again, you know, yeah, I think you should submit the letter something more succinct as a request such as. You know, we're, we're the board that's representative and working to move forward the, the best interests of people with autism and those on the spectrum. We would like you to consider changing the colors that are more representative of the

060flag that this group. Approved as the autism flag, something even that is too wordy, but I'm thinking something sort of short and to the point that doesn't get into the aggressive language, which certainly everyone is welcome to write that on their own. We're coming from a board like this sort of a succinct statement of what it is that we're that we're asking for. So wondering if, you know, maybe. You and I, and others who are interested can talk offline what that. Yes, it would look like that. I spoke to Willow and. The commissioner will and, um. She basically alluded to that, um, if, like, if official recommendation from the board, the body of the board itself. Go since governor combined with her recommendation and I. We can talk to will also that I'll also speak

061to privately about that. It'll get done on top of everything else I've done. But we, as a board, we send a united letter also. Official board recommendation, because nothing's going to happen if the board itself doesn't do it. It's what's going to do it is the board recommendation. The I got the politicians, they're doing their thing. So we got the politicians, state officials get the board. And then we, the board asked willow and I will also. That'll get it done. I mean, well, no, it's not this initiative also. I've spoken to her. Yes, I mean, I feel like this is Kate again. I feel like what Josh is asking for. Matches off with what. Um, and a lot of other agencies have been wanting to work towards as far as listening to autistic voices. So,

062it's so interesting to me when we get to the point when change actually starts to happen, or we need change to happen. People slow things down and the change doesn't happen. And we can't say, WDD can't say, New York State can't say that autistic people should have agency. Autistic people deserve a choice. Autistic people should have independence. And then when autistic people come and tell people who presume to be the professionals what we need as autistic people, that should be heard first. Josh's voice should be the loudest voice in the room. I'm just going to say about that. If we're talking about autistic people, if we're talking about who knows best, it's people with the lived experience. And maybe that's the way to talk. I don't know. Like, I feel like we already know this.

063It's part of, it's written down. I've read OPWDD's mission. I've read all of these other agencies' missions. And all it is, is a performative mission that I read online. We got to slam the gas. We need to start working. We need to start actually moving forward. We need to start making actual change because I'm just speaking for myself as an autistic small business owner. I am out here supporting all of those disabled people you were talking about in the first part of this meeting. That's what I'm doing today. That's why I'm not there. I am here in my space. Months I'm months now. At a loss, because I'm helping these children and families that no 1 is helping. I'm going grocery shopping for them. I'm bringing air conditioners to the house. I'm bringing them to

064my space. So the families get a couple hours. Yeah, Kate, thanks for all that you're doing. I don't want to thank you. I'm very upset right now because the work that's being done at the state level and at every other level that I've seen here in Western New York is performative work. And it needs to change. And it needs to change now. And no one is going to tone police me. No one should be tone policing Josh. I think that's inappropriate. Our voices should be the voices that are heard first. When I say I'm operating at a loss, I'm telling you, I took my own money from my bank account and got an air conditioning unit for an autistic man and his wife and their son because nobody else was going to help them. That

065is what I do every single day. I would love for every single person who's listening to me to come out and see what I do every day to help children and families. I would fill a gap no one else has filled. And then we're fighting about a flag right now. one of the most performative things that you guys can do is I am the end. It shouldn't even be a discussion. The flag should not be a discussion. Yeah, I think there's consensus that we all want the flag that Josh designed and that we supported to be the flag that's flown during Autism Acceptance Month in 2026. Josh, to Courtney's point, Would you be open to sharing your letter to the board and. Having the board come back with some suggestions, but at the end of

066the day, it's your choice to submit your letter and I don't think. To Kate's point, anyone should say you can't submit it and I don't think anyone is saying that. So you should absolutely support it, but maybe. If we can collectively. Because we are, we are a board collectively and we represent the same population. So, would you be open to sharing that letter? And I, for one, would be very happy to work with you to craft a letter that everyone agrees should be submitted. But again, at the end of the day, keeping your tone, Josh, and your passion in that letter. I don't want to take that away at all because as a dad of two boys with autism, just because I'm a dad doesn't mean I know how you feel every day. So, I

067want to support. Your letter, but give it the right. Um, and I don't know if I'm going to say this correctly, but but. But again, collectively come up with something that we all agree upon represents what we as a board. Trying to get across to the governor, I think it's important that the letters stay in Josh's voice. You know, for the most part, his words just a little. Edited down a little bit so that it's a little less aggressive. But, you know, I think because we are on the spectrum, we have our own way of talking that it has to be. In our voice. Okay, totally agree. So, Steve, Steve, if you're willing to work with us to Steve and Josh. I think we've got our little subcommittee right there. We'll set up a time

068and we can then bring it back to the full group at our next quarterly meeting. Does that make sense? Yeah. All right. Well, this is great. Really awesome input by the group. I think that's what we, I want to make sure if there were any other things that people wanted to add for Autism Acceptance Month. The next part of our agenda was about board visioning, but let me just check and see if there's any other comments on this portion before we move on to the visioning part. Actually, I got 1 thing that I was going to also kind of pitch. So, kind of going along the whole, um. Like, with autism this month, and then it followed up by water safety month in May. I think 1 of the things that the board can do

069and should do is to pull together. The number 1 cause of death for autistic children is drowning. And I think that we can make an actual dent in it. By pulling together, like, this would be the proper place where we could pull together kind of a coalition. Between New York swims between various nonprofits, like the, why the Red Cross. Scouting America girl Scouts and do a targeted. Statewide water safety and autism campaign. Between April and May. Where we go into communities, we do programming for parents for children. We work with New York swims municipalities to be able to provide swim lessons, lifeguard training. Water safety instructor training, because we're seeing these drownings. Go up so already this summer, it's been all over the news. Drownings are increasing. Speaking as a lifeguard, a lifeguard instructor, and

070now a lifeguard instructor trainer. There is a shortage, but it's also not just in guarded facilities. It's happening in swimming holes. It's happening in lakes. It's happening because of accidental immersion. And I think that it is time for us to kind of go. I'm a student of... Commodore Longfellow, who is the founder of most water safety programs, including the Y, the Red Cross scouting, and he did his old school campaigns. Actually, they were called crusades, where they went to community to community around the country. They did swim lessons, trainings. They did a water pageant. They did all this stuff, and I'm thinking that that is something that we can do. Working with the different agencies, the different nonprofits. Tools to promote water safety to do a targeted campaign, especially around autism and drowning because, you

071know, I think I've told my story before, but I was almost 1 of those statistics. And by having the proper. Training available, I mean, I was privileged. My parents had the means to get me some lessons. That I needed, and it turned into a 27 year career with the Red Cross. Still teaching swim. I actually left my full time role and I'm going back into doing training for lifeguards water safety instructors because there is such a shortage across the country. Um, but I think that's something that we can do for autism month, but we could also bring it into, um, water safety month and kind of really pull people and make a big. Big difference for the community. And that's something that we can do that can actually bring people this life saving training. We

072can include CPR. We can include lifeguard training and also to it can create jobs because we have a lifeguard shortage and speaking as an autistic lifeguard. It is 1 of those skills that anybody with any neurodivergency can do and actually thrive in it. And a lot of people in the industry, for example, I helped run a waterfront at a scout camp and 95% of the staff is neurodivergent in some way. And including multiple staff members who are artistic, including myself. So, I think that's something that this board can do. You know, we're supposed to bring the agencies together. Bring the nonprofits together and really make a. Really make a difference. Um, I mean, it will take some planning. It will take a lot of work. But with people we have sitting around the table. I

073think we can do this and actually make the very significant debt in that terrible statistic. Yeah, it's a very important issue. So, whatever we can do to be supportive of raising awareness and helping you in your efforts. Happy to do it. Sorry, it's Michael. Can you hear me? I had a couple of points I wanted to make. Yes, go ahead. Okay, 1st, all debate I just want to say, I'm also somebody on the spectrum and I think as anything else we're entitled to disagree. I don't have to agree on just because we're both doesn't mean that we have to agree. I think 2nd, secondly, as somebody who's been in politics a long time, I just know that you get more done. By not being so aggressive, and that's my opinion. I'm entitled to my opinion.

074I do think that 1 thing I would like to see done. I think would be helpful though, in a bigger sense for the autism acceptance month. I think I mentioned this to you before Courtney. 1 of the big problems I found was that this past year, it was only the 1 event up near Rochester, which was not convenient for many of us. There should be multiple locations as particularly at least all being in the city around the state where these events are occurring. Okay, well, I agree that we're all our opinions and I always respect all everyone's opinion. I want to say that. Um. Again, I want to say the reason I chose a slightly aggressive tone is because I feel that we just general. I love what people do is that we haven't taken

075seriously. And if you're not taken seriously. By being kind and happy, like. And I don't think it's natural. Especially for a population, I guess, to remain happy and cheerful knowing that we're. Pretty much being spoken for by a massive organization that doesn't really respect us. Year after year, decade after decade. Again, I completely respect your opinion, but I'm, I'm basically based the letter and the tone. Off of so many online and in person who I met. Over the phone who all just quite frankly fed up. And in my, again, my opinion, absolutely rightfully so. And I'm trying to channel their voices in it too. Not 1 person who I met was like, cheerful about blue. You know, none, so I'm trying to make this channel that the very real. Use a majority. Of the people

076in our population who are tired. Being spoken for by absolutely able to organization. And, you know, again, I think we collectively asked nicely long enough. I think we have very familiar with the situation. Yeah, so that's why. Getting to my other point about geography, I do think that that was a limiting factor on us as a board this year was having it just be in this 1 park in Western New York when obviously it's a huge, it's a large state. And I think at a minimum having something in Albany and the city would make sense. I think I'll defer to the agency folks to take that under consideration. So. Appreciate you bringing it up. Okay, so. Thank you for the additional thoughts on. Autism month, um, if it's okay with the group. I was thinking

077we could move on to the board visioning. Section of the agenda. So, it sounds like it is, because I think this is an important conversation to have and this came out of the discussion that we had at the last meeting. So, let me just do some level setting and then I'll open it up for conversation. The legislation that established our board had 5 mandates under it. The 1st was that our group was to study and review the effectiveness. Of the current services and supports that are provided the 2nd was to identify legislative and regulatory activity that would improve services and supports. The 3rd was to identify ways to improve inter agency coordination and we have a really good representation today from all the different agencies. The 4th was to identify ways to improve outreach and

078coordination for services for minority groups. And the 5th was any other matters that we deemed important or appropriate by the board. And I think our. The conversation we just had is definitely part of the, or an example of some of the types of topics that we've covered. And for those who are newer to the board over the past few years, we've developed a set of recommendations that have focused on a wide variety of issues. Everything from awareness and acceptance of autism spectrum to specifics around frost agency collaboration. We've made recommendations around research and science. We've made recommendations on housing, employment services like that. We've talked about regular regulatory barriers, eligibility, community supports. We've made recommendations on training for professionals. Um, recommendations on health care workforce and diversity equity inclusion. So, given all of those things

079that that we've done, um, I sort of felt like, hey, it's time to revisit based on what people said at the last meeting. Are we headed in a good direction based on our legislative mandate? Um, the activities we've we've done to to date and. Is there anything that we maybe haven't focused on or goals that we want to clarify or sharpen focus areas for the future? Um, so I figured I could throw out those questions to generate a discussion. You know, what is our long term goal? What are our, what should our priorities be in the next year or so. So, I'm going to pause there and and open it up for some feedback and conversation and hopefully somebody's taking some good notes. So, anybody like to go. Oh, here's the questions on the screen.

080Our long term goals are key priorities, how they align with our mandate. What would we like to focus on in the next year? And how do we know we're making a difference? I mean, I'll, I'll start. I think 1 of the things, um. I see the board doing more is starting, you know, so we've kind of done, we've worked on the interagency. We've done all that. I think we need to start creating more tangible products. Um, you know, cause every agency kind of has their own thing. 1 of the things we do in disaster relief that we find that works very well is a thing called a mark, which is a multi agency resource center. And now I don't know kind of what's out there because I'm not having been eligible for a lot of

081the resources and the thing that was probably stuff I'm eligible for. Oh, that I don't know about. So I'm thinking so what we do is literally we bring every all these agencies. So, FEMA. HUD all of them into a room. Somebody can come into the room and meet with the agency and say, hey, here's my story. And it comes out with, okay, you're eligible for this or, hey, you're not eligible for this, but you, you should go talk to the Salvation Army or you should go talk to the Red Cross. And it's everything of agents, federal agencies, state agencies, nonprofits. Things like that and kind of having that one stop shop where somebody can go and we have people who can help navigate people through it. Um, I'm, I would, I would like to, and

082this is me personally, I would like to see maybe some of those set up around the states, you know, it's just kind of a pop up thing, um, where we can get people through the door, help them kind of navigate the system. Because it is a very large, confusing and scary system. And especially now with everything going on, um. You know, having more of that tangible for families. Um, you know, for adults, you know, for self advocates for people to kind of go and learn. Um, I think that I would prefer, I'd like to see that as a focus area. I'm not sure if it's out of line, but, um, just kind of having a more tangible. Thing that we can product that we can give people that can help them and make a difference

083and kind of. You know, help New York kind of lead the way with this. That's great. I think over the next year, everything that the board does has to be seen through the filter of having a lot less. Money a lot less funding, so we can have all sorts of dreams about great things. But it's going to be with a lot less money. There's always a realist in the room, so thanks for the reminder. They want to talk to that fact is, you know, and that's 1 of the things that we're exploring as we see the reductions in disaster relief. Um, it's actually going to come on the shoulders of the nonprofits more than the agencies. Um, you know, FEMA is not going to write you a check for 60,000 dollars. Like, they normally do.

084Um, you're going to get 4,000 dollars from the Red Cross. You're going to get 2000 dollars from Salvation Army. And that's why we're actually looking at these to be more important because it kind of shows the whole. Landscape, and it's not just people going to FEMA to go get their FEMA check and saying, hey, look, um, for example, did anybody know that there is a Buddhist agency that will actually give you money to help you rebuild your home? You know, there's, there's agencies that are out there that are not really. You know, they're nonprofits, like, there's faith based groups, there's community organizers. So we invite mutual aid people in stuff like that. And it kind of starts building a more resilient network. That doesn't rely on federal funding and state funding. Yes, that is part

085of the picture. And yes, that's very important. Because not 1 of these nonprofits or other agencies is going to give you that check for 60,000 dollars like female would. Or however much they need. Um, so, but I think now it's going to be more important that we get those resources into a. Easy easier to navigate model. And help people say, hey, look, I know the state can't help you, but have you reached out to this group? You know, any other thoughts on the questions that you can see there. Courtney, not too much a thought, but really a question. I mean, how much. How much power or say, does the board really have? I know we've done some things, but everyone's point about tangible things. I think the flag in the greatest tangible contribution the board

086has made. So, I mean, really. How much authority or or power do we have to to initiate change? I mean, I think. The type of discussion that we had today is something that. We can all hope result in a change. I think the things that I rattled off that we've done in our recommendations related to all those different areas, whether housing and so on. Have been acted upon by the agencies, and I think having the forum. We do help keep things on track and we help keep the agencies accountable with focusing on the issue and reporting back on the things that they're doing to move the initiatives forward. So. I think our greatest strength is that it's sort of is keeping that accountability and keeping things on track. That's kind of our 1 really good

087solid superpower. If that's what you want to call it. But I think it's really up to us and that's part of the wire. The reason I brought it up is, you know, do we do you feel like the time and effort on this board is worth it? And if not, what should we be doing differently? How can how can we. Make sure that we're carrying through on on the mandate. And I think I think we've been doing a good job. Um, you know, there was a time period too, where we spun off a group on housing that came up with some really good recommendations. Some, some of which have, um. I think move forward, you know, so it's just a question of. I'm posing it to the board want to make sure that you feel

088that your time and effort is worth it. Well, I, I certainly believe having a voice is well well worth the time. An effort, so I, I certainly do think this time this is time well spent. Yeah, okay. Well, this is, I mean, this is an open conversation. You know, I think we've got some good input today. People have other thoughts. We're always, we're always open to that and there's no time constraint that you have to share your thoughts. You can share them with the group. Via email or however in between so. So, I'm glad that we had this this chance any other thoughts on that before we turn to public comment. This is Chris from the council. I just appreciate the input regarding efforts to in our agency coordination. Um, 1 of my roles at

089the council is, um, I'm the director for the inner agency resolution unit. And we support youth and young adults with complex care needs. I love the idea of a multi-agency resource center, but I could also appreciate some of the challenges right now with funding to support such a resource center. But I do want to highlight that there are resources available to help. Families navigate multiple systems and services that are available and I'm wondering if there's an opportunity to kind of maximize. Education and information sharing. Regarding those resources, so 1 of the resources that the council has is an online platform called help help hub for children and families. And it is an online platform with services through various agencies, including OPWDD, OMH, and State Ed. And then there's like other resources like New York Connects

090and OCFS's HEARS line. So I'm just wondering if there's an opportunity to create maybe a resource guide of... Resources available, um, from multiple agencies. I'm just going to ask the agencies if it's such a guide exists, or whether that's something that we could do. Going forward, I'm going to throw in there. So kind of we experience and just, you know, the multi agency resource centers that we talked about, they're only open for 23 days at a time. So, like, we open up in a fire station, but we do actually produce kind of a brochure. And so the big thing is, you also have to remember that yes, a lot of this is online. Not everybody has access to online or not. Everybody can navigate online. But I do like the idea that if we can

091have a kind of definitive. Guide that I can hand somebody that has stuff like websites, phone numbers, you know, that's something that would go a long way to help that, which. You know, you don't yeah, you don't have to have a physical in person place, but kind of having a multi pronged approach. Would do a lot to help and I don't know if there's anything like that out there. So. Yeah, I think that's a phenomenal idea to to take on the task of almost creating a website outside of that brings that tries to capture all the resources by counties. So, you know, the 1 problem with autism on in New York is very fragmented. And it's very difficult to find services that are available and going honestly going to the website doesn't always help. It

092sometimes confusing the issues. So, taking on the task of creating a, a, a, a, a website. Maybe a monumental task, but I think it'd be so valuable to the families of New York. I think. Some sort of research that I see this on a county level would be very helpful people when you're looking for education therapists. Lifeguard training, what have you? Oh, sorry like any kind of specialist within the autism world. I think that's help. And I think the way to do it is we can't trace everyone down in the state is you have an online submission form. And obviously, somebody has to approve them, because we don't want any random person submitting something and people use those as a lawyer who has an online submission form. I get spam submissions all the time. So

093we have to filter those out. But somebody who can submit these are lawyers, these are advocates thinking of my own field. These are people who do therapy. These are people who do this kind of therapy or that therapy. These are the people, you know, a way is if you're a person, I can filter by county or region or specialty. I mean, it works at a county level. I wish no reason. It shouldn't be able to work at a state level as long as, you know, again, we're not chasing the people down. They have to submit their info. Just want to add that the office of special education and state that we do have a community resource map where it's public facing it's online. You can go in and search on the type of service you're

094looking for and it will bring up by county by community where those resources are located. And we're always looking to. Keep that updated, but also add add agencies and organizations that may not be on there get that information in there. So something to the something to that effect might be useful specific to, um. Supports and services for families that are looking for information around autism. Although I'd love to redesign your website. I've had a lot of issues with it, but I think that that would be the best way is and something that's user friendly. These specials are not very user friendly. And I'm just saying this page is under like, 10 years old. Yep. I hear you. But no, I think ultimately, that's the way and again, we don't have to chase people. People need

095to come to us, but it's a way to be a resource guide because a lot of people don't know where to look for resources and we've done in Westchester, but I don't know that every county is going to do that. And, you know, you're looking resources are very different in the city, like, with education Chris and I both know there's 2 systems of special in New York, New York City and the rest of the state. No question. Um, we're talking about, like, um, making things more accessible and better. Right? Um, I know Caitlin, um, would this be like the peer specialist? Can we help? I mean, I'm also your specialist and, uh, this sounds like something similar to what we do. Yeah, for a little bit of context, um, has a new office of advocacy,

096which is staffed by. 6 peers, well, 6 advocates who have experience in the service system, including Josh. Um, and this is definitely something that would be in the office of advocacy role. But would certainly need collaboration with other state agencies. Yeah, because I was hearing this, I was thinking of this whole process, something we could take a look at. So, I think that on the board, like, we should be aware that does have an office of advocacy. And if there are. I'm Caitlin, please correct me if I'm wrong at all with this, but there are different peer specialists. Each peer specialist has a region. I'm in region. 5, which covers Queens and Long Island. So pretty much we are the peers, so we're kind of like. From our, from our perspective, from the people getting

097services perspective. So, something like this, that's something which we can definitely help on. Yeah, I also want to throw out there too. There is some infrastructure out there for this in the nonprofit world with findhelp.org and 211. So 211 is kind of a great clearinghouse that we refer all of our fire clients, everybody who calls the Red Cross, and we say, sorry, that doesn't qualify, call 211. So that's maybe a resource that maybe, you know, make sure that there's information sharing. Because they already have that infrastructure that is statewide accessible to everybody and it's a phone call and they have people who can help them navigate through that. So that might be something to kind of. You know, really, really start to broaden from not just the state agency collaboration, bringing in a lot of

098those nonprofit that wouldn't are non traditionally autistic related. Or autism related nonprofits, but they do have an infrastructure. And I'm sure they get phone calls all the time saying, hey, I'm in this bind. I don't know what to do. So that might be something that we also start to pull in and collaborate with. I'll just say from my own experience, a lot of those agencies, as somebody else stated, I think Michael are very. They are not, they're very outdated. And I mean, I can just provide an example for myself. I've been doing what I do working with children and families with autism since 2023 on my own. And I have reached out to parent network in my area every few months and I'm still not on there. They just did their whole new. There are

099whole new list that they put together resources for the area and I'm not on it. Is that a state agency or is that a private organization? Oh, parent network. They're the ones who get the funding from the state to run the. Parent whatever it is for parents, photos support for their kids. State funded. Yeah, well, work with somebody with autism. So that's that's what I'm running into here is that everything is very fractured. Agencies aren't keeping up to date on the resources that are out there and available for families. And what's happening is I'm getting a lot of families that those places aren't supporting. So they're coming to me. So I fill many gaps in the community in western New York that those agencies are not selling now. So, like. I guess getting people on

100board that, like, it's important, especially right now that people be. Pulling the resources collaborating with each other. I don't know how it is in other parts of the state, but I know in Western New York, everything is extremely competitive. Everyone's feeling like they're scraping and scrapping for the same grant money. So people don't collaborate. So, like, I don't know how we get people collaborating. And if you're referring to the family and community engagement centers from the state education department, which is state funded and or the parent network again, we're very much we work closely with them. They're federally funded. If either 1 of those are the entities, which I hear. Yes. You can just send me your, your agency or your information and I'll make sure it gets where it needs to go. I've already

101spoken with them. I haven't got very far. My point being is that nobody was like, I'm serving these children and families and I'm not getting any support in my community from these agencies. It's rough. Especially as an autistic person myself. That many of these agencies are run by the parents of disabled people and the short-sightedness of that is Starting to show and how families are being served in our area. If at all, if at all, I think Kate just touched on an important issue that exists within I've seen for years within the autism community, the struggle between self advocates and parents. There's always been this. Struggle in many cases, and I don't know if we, as a board can solve that, but I know it's something that exists between self advocates and parents where you

102see that tension building and. Maybe there's a way for us as a board to do an educational series to bring people together because ultimately. Parents have rights, self advocates of rights and usually self advocates who are speaking or adults, not the children. So. As somebody who represents families, you want to try to figure out a way to bridge that gap because to me, that is 1 of the most important gaps that exists. And I think people are willing to listen. So, like, I've been kind of seeing this in the aquatic world. Um, right, I went to the big national conference and there was about 5 different. Presentations on autism and water safety. Not a single 1 was given by an autistic person. So, I'd always raise my hand and say, okay on your board or

103on your, you know, okay, you're giving a presentation. How many people are actually autistic who are doing this? Oh, I don't know any autistic swim instructors. Hi, my name is Mike. So I'm now. In and but talking with people and just that exposure. Um, so I'm now presenting at being 1 of the main presenters around autism and water safety at the next conference next year. Um, so I think it's important that, you know, that's something that could kind of help and some of that could be tied into, like, if you get a grant, how many autistic individuals are. You know, on your board, or how many people have a leadership role and that's kind of the questions if you start asking. um yeah and they're not you know not an aggressive man just saying hey

104i'm just kind of curious how many people um you know with lived experiences are in your leadership roles and then they say you know we haven't really thought about that well you know it's something that that exposure but also too we do there are some tools that you can use by controlling grants and funding where you could kind of help accelerate some of that and say look you need to have at least one autistic person there So, that might be something to, you know, to kind of put in there and it's going to take time for paradigms to change. It takes about 12 years for people to really shift the paradigm like that. So, yes. I don't hear you. Oh, my God. You can turn comments. Okay. Okay. Good conversation. Are we ready to move

105on to public comments? I think we have someone in the room who's interested in public comment and then we can move to online. Okay, perfect. Let's go to that person. Hi, there good afternoon. My is on loud. Okay, came from New York City just being in person room for coming virtual. So it's my 1st time being here. My camera just like. I live with my mom. I'm also special. I have ADHD. So my care manager is like, my mom is going to have a hard fucking start. I'm like work right now. So my mom part me, hard work me. And I'm proud to be here today. Coming all the way from New York City because my mom trained me to be independent. I'm on autism, ADHD special myself. And like, and like right now I'm

106dealing with. I'm with best buddies, which probably you should best place a leadership conference. This happened. I think our last year is leadership experience. So, for me, I am looking for housing, especially to live in the pain living class. I took 2 classes independently with good class and best place to 2 years. And you have a role with why I and for me. I need to you guys need step out with the, um. Ideas for housing, especially because. When my mom has a right letter to open the view, you always give my commander from carry sign. Her name is yellow hunter. She's gave us all time. She like. Because that's the right letter stuff. Like, why? How do you think we kicked out of the house? Thank God I'm not right now living wise, but

107especially housing because. Open that these gave us a hard time, especially even be independent families. You know, save them and want to be a group home and stuff. So, like, um, housing is really must do because I don't want to. Be like, live like normal housing state and stuff, but I want to meet with people disability. I'm an actor myself. So. That's my call myself. I wish that. That has better care magic because, um, I communicate with when the from, I'm a different, I'm a, I'm from say Queens. She said that she told me her history about, like, uh, things are going. Before was bad. So, like, now it's like, these guys get over overturn. That's my. That's my comment today. Thank you appreciate that. Are there other comments from people in the room? We

108don't have anyone else in the room. Okay. Anyone online? I think we have Dr. Lauren Tobin Puente. I think you should be unmuted if you can hear me. There you go. Yes, we can hear you. Hi, thank you for inviting the public comments and thank you for a great meeting. I'm Dr. Lauren Tobin-Quente. I'm a psychologist in New York City and Queens, and I'm part of the New York DIR Coalition. A few of our representatives came in, I think it was the January meeting, and spoke about the bill that is currently In the New York state assembly and Senate, a 3896 and it's on 7 and this bill proposes to expand insurance coverage for. Individuals with autism, which is the developmental differences and relationship based model, which is an evidence based individual centered approach. As

109most of, you know, is currently the only autism intervention that's covered by insurance. So we're asking for to increase that choice that would be available to families and. individuals as we know parents and self-advocates are asking for greater choice. We're encouraged because this is not a budget bill, we're not asking for more money, just an expansion of the different types of intervention that's out there. We've had a lot of success over the last few months. We had a lobby day in Albany in April. Kate Kaufman, board member, was kind enough to join us and did a great job as we spoke to various assembly people and senators. We've gotten overwhelming support, really no pushback at all in navigating this. From both the assembly on the Senate size and the insurance committees, and we're hoping just

110in the next legislative session to get more momentum, get more co sponsors. We're up to 14 sponsors on the assembly side and 6 on the Senate side and continue to hopefully push this through. So we wanted to just provide that update to your board and for your support as well. Thank you. Thank you for your comments any other comments from online, I just want to direct anyone who's online if you want to raise your little Webex hand. That's how we'll know. You want to give a public comment? There's no 1 at the moment. Okay. Great well, I think that will conclude our meeting. Um, we have the next. Date for our meeting is November 6. do I have that correct? Yeah, we do actually have another, um, commenter. Oh, I'm sorry. Okay. Would you like

111to. Go ahead you should be unmuted Tamara. Hello can you hear me now? Yes, we can hear you. Okay. I apologize. Yes. My name is Tamara Begale and I am a system, a disability systems advocate and have been for decades. And I work across all systems. I have a lot of experience in and I am now breaking into because I'm noticing the silos and we need to find a solution. Several issues that I'm finding is that individuals with. Autism are often late diagnosed, especially if they are if they do each as their as their primary mode of communication in the on the side and then a lot of children and in a whole between services. And get stuck in hospitals at residential centers. It is essential that before and psychiatric diagnosis. Determined that a, that

112a developmental diagnosis is ruled out and that means that we need to work with the Department of health to ensure that autism is ruled out before we rule in psychiatric diagnosis. I can, I can provide several many case studies whereby this is not taking place in New York state and we want to correct types of services that best treats our individuals with disabilities are given and that our families are given the support they need before other mental health crises occur. And so I would desperately like to work with anyone on this issue and this across. Systems issue it is Department of health because it's diagnosis. It's and it's I have a 3 to I have 6 on my caseload right now where kids are in holes because of lack of diagnosis. This is a crisis

113that needs to be solved. Right? Thank you for your comments. Are there any other comments. At this time, there's nobody else online. All right. Great. Well, we had some really great discussions today. We have some follow up item with a smaller subgroup of us meetings to talk about the comments that Josh made today. So that is our 1 follow up between now and the next meeting next meeting. I think it's November 6th and if there's nothing else from. Anyone today, I think we will conclude the meeting 10 minutes early. Great, we'll have a great summer. Everybody. We look forward to. Thank you. Thank you.