Autism Spectrum Disorders Advisory Board Meeting June 15, 2021

001I want to let everybody know that today we're offering American Sign Language interpreting as well as closed captioning. To access the American Sign Language interpreting, you would just need to look at the thumbnails at the top of the screen and pin both the interpreters. We have two. They will be taking turns. They're listed as ASL interpreter and then their name. To access the closed captioning, you would want to look in the bottom right-hand corner of your screen to the multimedia viewer. If you open that, there should be a header at the top that will allow you to change the font size, the font color, and even the language in which you watch the closed captioning. Today, we're offering English, Spanish, and traditional Chinese. And that's all I have. Wonderful. Well, I think I'll kick us

002off and thank you for that information about the logistics for today's meeting. I want to start by just welcoming welcoming everyone and hoping that you are all well and healthy. And let me review the agenda 1st, so everybody knows what to expect today and then we'll start with welcome and introductions. So. After our welcome and introductions, we will have a hopefully very robust discussion of the board report. And future possible discussion topics. We had sent out an email prior to today's meeting. So hopefully everybody got those materials. And was able to view them before the meeting today. We're then follow that discussion with a presentation and a solicitation of ideas for the 5 year plan for and map spending from commissioner castor. So very happy to welcome him today. And then we will have a

003board discussion of the 507 plan. Before we have public comment. So, hopefully we will be able to get through everything efficiently, but with good back and forth amongst the board members. So let's start with introduction. So, again, Courtney Burke, chair of the autism spectrum advisory board, and we have a new member who I would like, I'm going to briefly introduce him, but I'd like him to start us off and then we'll go around. The new member is Josh. And we're very pleased because he rounds out the number of appointed members to 10, which is consistent with a statute. So, if if Josh wouldn't mind introducing himself, telling us a little bit about his background, that would be great. Josh. Yeah, okay. Well, I'm Josh. We can hear you welcome. Okay, well, thank you. 1st of

004all, it's a complete honor to be here and so thank you everyone for having me. I'm myself in the spectrum. I was diagnosed as 13. But I never was growing up, you know, there's something which, you know, back in the late 90s or 2000s, it was not something you really like, told people it was kind of like, but nowadays, like, you know, I was able to tell people and really it changed my whole life because. Thanks to be on the spectrum and like, you're embracing it. I landed a really good job in for Washington at some place by spectrum designs. I co founded. A really successful podcast with them. My co founder, Dave Thompson called sounds like autism. I've made huge connections in the media world with like heads. People like ABC and stuff like

005that and that's all because, you know, I embrace who I am and I really hope that. If people are watching this, who are on the spectrum. And I know, like, a lot of people on the spectrum do not know about this board. Because I have what I found out, I got on, I felt it's important to me go around, tell people about the board. And the senator who officially nominated me originally, and all these people, they didn't know about this board. And that was something which I don't know if you are aware of, that most people do not know this board exists. And whenever I tell people, especially their parents and children on the spectrum, or people themselves on the spectrum, that this board exists, you see something the same in everyone. You see their

006eyes light up like, wow, a group of people actually genuinely care about me in government. I think one thing which I just I want to bring on the board with me is this a need to like we have to figure out a way to let the people know like everyday individuals know that this board exists because especially after like you know the events of 2020 um like the morale is so down um in the people with disabilities that just knowing this I mean it can make such a big difference in lives. Well, that's that's great Josh. 1st of all really interesting to hear your background very accomplished and. I hear you about thinking about different ways to get the word out about the autism spectrum advisory board. And the work that we do the report,

007we produce the recommendations all of that. So I, I 2nd, your thoughts on that. Absolutely and again, thank you. Just again. Thank you for having me on here again. It's an honor. Yeah, well, welcome glad to have you. Why don't I start with the appointed members to go around to just say hello and I hopefully I can do this because I can see most of the names I hope on my on the WebEx. And so I've seen Josh again, Josh welcome. Mary Lou, are you on today? Good afternoon. How are you Courtney? Good. Good. Thank you. I'm here and I had the opportunity to look through the report. I thought it was such a well done document. I love the way you presented our points and how the government has addressed them. And I was

008quite impressed with the Different support groups statewide for families for schools for journals and newsletters. I thought it was very comprehensive and be a great resource for many people. And I agree so much. With Josh saying about getting the word out, you know, I don't know how to do it, but I certainly think that. It's something that is very, very important. Excellent. Thank you. Well, good to hear from you, Mary Lou. I think I also see Mary. Are you on, Mary Boatfield? Hi, Mary Boatfield. I'm President and CEO of CP Rochester and Happiness House in the Finger Lakes. And I'm also Chair of the Golisano Autism Center Board of Directors in the City of Rochester. Great. Good to hear you again. I also think I saw Charles Massimo. You want Charles meeting? Yes. Hi, Courtney.

009How are you? Yeah, great to see and be here and Josh welcome. It really excited that he is part of the board. And I think it adds a lot a very different perspective. We need so thank you for agreeing to be part of this. Great. Thank you, Charles. And did I see Sarah May Pratt? Yes, hello, I'm Sarah Mae Pratt. I'm the founder and owner of Puzzles Bakery and Cafe in Schenectady, where it's our mission to employ individuals with autism and other developmental disabilities in an inclusive atmosphere. And I also serve on the Schenectady County Legislature and it's a pleasure to be here and looking forward to Hopefully a great conversation today. So thanks for having me. Great, thank you. And I, I think I also saw Patrick Paul. Yes, hi, Courtney glad to be

010here. Welcome Josh. You're great addition and I'm Patrick Paul CEO at Anderson Center for autism. Great. And did I miss any other appointed members? I saw that we have some self advocates on as well. And of course, our ex officio members from the agencies, but any other pointed members. Okay, well, if I did miss anybody, I apologize. And I did see a number of self advocates on as well as a number of ex officio members, but I wanted to make sure that we all had a chance to say hello again and to welcome Josh as another appointed member. In terms of self advocates, let's see, I see Mike Gilbert is on. Hey, Mike, how are you? I'm going to keep a video off because I'm not for that right now. I absolutely get it totally

011understand. But good to good to see you. See, Mike, Mike is on as well. Hi, how's it going? I'm Mike Ciappotti. I'm the Vice President of the Board of Directors for the Autism Society of the Greater Capital Region. And I'm also with the Red Cross as one of the National Disability Integration members, part of our advisory committee. And I work in the emergency management field. Great, great. Thank you. Did I miss any other self advocates? I'm right here. I'm sorry. I had a phone call on my. Myself, so if you called me, I'm sorry, I didn't I didn't hear you. Hi, I'm Kristen factor. I'm a self advocate and, um. I, I'm also a lobbyist. I also work for as a. Yeah. Great well, thanks Kristen for joining us today and any other self advocates

012that I didn't call on. Yes, hi, my name is Sean. I'm a board member of RBC blue speaks as well as culture city. Josh, it's an honor to have you a part of this board and. Let's get started. Great. All right, let me just thank all of the ex officio members as well from the office of mental health, the Council on children and families. The developmental disabilities planning council department of health. Office children, family services, the state education department. And the office for people with developmental disabilities, so welcome to all of our agency reps as well. So we mentioned that the bulk of today's conversation is going to be a discussion about the board report. You don't have a copy. This is the wonderful cover and it does have a lot of good content. So

013it's not just about the wonderful cover, but it reviews everything from some of the actions that the board has previously taken. Recent legislative and regulatory changes. And so after today's meeting, my hope is that a copy of the report will be submitted to the governor, legislative leaders and the disability committee chairs in the Senate and assembly. The report, if you have not seen it, if you're joining us from the public or from 1 of the agencies, the report is now posted on our website, the autism spectrum disorders board website, which is hosted at. So, you can easily go to probably search, but it's. It's the website slash autism spectrum disorders advisory board. And not to think too far ahead to the fall, because I'm just starting to enjoy summer, but the October meeting will feature

014presentations regarding research on how COVID-19 is impacting people with autism spectrum disorders. So we wanted to do that not right away because we wanted to be focused on the report today. But we figured with everything that's happened in the past 18 months that it would be important to focus on that. Make sure the moment is not lost with everything that happened with COVID. Make sure we have lessons learned. We understand the impact that COVID has had, particularly on people with autism spectrum disorders. But we would talk about that today to get your input on what that presentation looks like. And we also want one of our future meetings to include information on data and research regarding incarceration rates. We had talked about that at our... Last meeting had requested some additional data information. So we're

015hoping by the fall, we'll have that and can have a robust conversation about that. So I'd like to start with the report and I don't want people to be shy. There's also a chat function, which people can, if you're not the kind of person who wants to speak up. With your voice, if you want to type into the chat, you can do that. I'll try to make sure I'm monitoring it and Greg. Greg, thank you. Greg Roberts is always for all that you do for it for this board. But if you could let me know if I'm missing anything in the chat, I see that. You actually just posted the link to the report. So that was helpful. So, thank you for that. But I'd like to get folks feedback of how does the report

016look. We've added the front section since the last version about our efforts to improve coordination for minority groups. Some of the things that we're doing around cultural and linguistic competence. So those have been great additions since the 1st iteration of this report. So, I'm going to open it up to the floor. I know. I think it was Mary. You might have commented initially on the report. You thought it was. Really a good compendium of information and recommendations. So let me 1st, open it up. So feel free to speak up. So, I, this is Kristen here. I read a little bit of the report and I actually thought it was very interesting. It was like. Like, so much information in 1 reading, but I thought it was really good that now we have a saying on

017what. What we need yeah, and it's quite a listing of, um, of ideas and we, we have had periodic reports. From various people to let us know how they think we're doing on the progress on some of those recommendations. Actually, the report even lists some of those guest presenters. We've had people from the New York Alliance for inclusion. We've had folks from on workforce transformation issues. Jacqueline Hayes presented on diversity and inclusion efforts. We've had the legislative committee chair for the New York Association for behavioral. Analysis, which, by the way, you know, Greg, while I mentioned that, so I don't forget. I didn't know if you wanted to mention the legislation that was recently passed on. That that I think is going to be on applied behavioral analysis might be worth mentioning today. Yes, so,

018as people recall from 1 of the meetings last year, we had. Debbie Napolitano from the legislative committee chair from the New York association for behavior analysis and that was in response to 1 of the boards recommendations that. That the state take actions to expand the number of people who practice in New York. Excellent presentation from the Association for Behavior Analysis. And one of the things that they felt was an obstacle to increasing the number of ABA professionals in New York State was the scope of practice. Some of you can recall they had concerns that they believe people who were trained in ABA could do more things in other states and New York had some restrictions. So they were sponsoring some legislation. That would expand the, the range of services that people with can provide in

019New York and I'm happy to report that in the last week of the legislation, the latest legislative session. That that bill did pass both houses and so it will be sent to the governor at some point in time during this year for his signature or veto. So, if people are in support of that legislation, I. It would be probably a good idea to send a letter, send a note to the governor's office explaining that. Or saying that, but I wanted to put that out there. It was good news and that all happened too late to get into this report. There was also a couple of other things that happened the last week of session when this report was already. Baked, so we'll have that those updates next time, but thank you for pointing that out

020chairperson Burke. Yeah, no, I think we can claim some success, or at least having a part in that success by putting it. Bringing attention to it in our report and making sure that it was part of the conversation. It's a big deal to get a piece of legislation passed. So. I felt like we contributed to that, so I just wanted to take a moment to celebrate that. So thanks for the details, Chris. Just 2 more presentations. I wanted to mention that we had this year. Janine, hopefully I say her name right. I'm not that if you know Greg, but. From the autism side of greater capital region. And then then nor side from Empire State College. She's an assistant professor of applied behavioral analysis and the founding director of the Center for autism inclusivity. So

021those are all really helpful presentations that we've had in the past. But again, I want to open it up for additional thoughts from board members, whether that's folks from the agencies or the actual board or self advocates. Any other reactions thoughts on on the report version. I think it's very, very comprehensive and I didn't say welcome, Josh, but I think he's right. I think we need to make sure that we get it in the hands of individuals with autism and their families and people who work at our agencies and people who we sit with on different boards in our communities because it's extremely well done. I agree. Any other comments or thoughts, Greg? I know we thought this part of the agenda would. Would take a while, but people seem to be pretty happy. According

022to. Eventually feedback from the general population on how value based on this report. I don't know how to exactly go about that. But we'd love to hear from family. On on the value of the sound fine from this report. And as well, as if they would prioritize the issue similarly, I'm sure there's a lot of. But again, I don't know how to facilitate that, but we'd love to hear more of the general population feedback. Is there a way for us to do that? I know we have a lot of guests or attendees. Yes, there there is, there is a website on the website. There is a place that the public can comment can make some submissions to the board. I know the board members we've given. I provided you with some emails comments from people

023who had watched the last board meeting. The public is out there, they can read the report at their leisure and on the website, there is a place to connect us Josie perhaps later in the, if you could post that, I don't have that in front of me in the chat room. That would be wonderful. There is an email address and we'd encourage the public to comment. Send in your email, send in your thoughts and we will take them to heart. The goal is to have good solid reports and help us guide us on next year's report. And we're also looking for ideas for the board to tackle for the upcoming year. Well, I think once we have sort of a lessons learned in October from COVID-19, any type of pandemic, a major emergency, I keep

024reading more and more in the news as well about proper training of. 1st responders, I think that all of that is worth perhaps focusing on in a future iteration or as an addendum to the report at some point. Great. Yeah, I'm looking. Mary Lou had. Commented in the chat about a sensory friendly emergency emergency room pilot. And I guess Josie had indicated that Mount Sinai has begun training the support staff at all system hospitals. So that sounds like. That's a good thing that's happening. Perhaps the best practice. We want to see happen other places. I think we also should also train our cops more because I think sometimes when we have meltdowns, sometimes it sounds like we're like mental health and everything, but we're not. They should learn the signs of people with autism that

025having a meltdown. Just as this is a suggestion. So, I'd actually like to jump in here and say that I'm a part of an organization called Culture City that just recently launched an autism sensory training for police, fire, and first responders in Salt Lake City, Utah, as the first city that we've done. And so far, they've been reporting to us multiple lives that have been saved and multiple instances that have been able to be de-escalated due specifically to the training. So, I, I could potentially send. Information about this group forward to the rest of the board to review to potentially implement and other major cities and areas in New York state. If that's something that we would be open to. That's awesome. I'm I, I would love to read it. Okay, excellent. Any anybody else

026if you need anybody to help the train, I'm. I can get on a plane and fly it to get over and help if needed. Okay, great. I'll send out the information to everybody at the end of this meeting. Cool. Yeah, Sean is well, Greg is the best way to get that circulated to send it to you. Yeah, okay. That's really great to know. Thank you, Sean. Of course, of course, so any other thoughts or comments on the report. Hey, it's Mike, so I kind of want to go back to what you're talking about the coven and also. Some of that stuff another thing, it hasn't affected New York, but I've kind of seen it is, I guess the Red Cross work and other agencies we're looking at. So usually disaster relief is kind of an

027acute thing, right? The disaster happens. We respond to it. However, in the past couple of years, it has become a chronic thing. So, like, for example, this is probably the first week I've been back in New York since January 1st, where I have not been deployed in some way, shape, or form. And last year, I spent 300 out of 360 days out deployed. That I'm also kind of seeing there's very big shifts in the community around that. So, like, for example, Hurricane Laura hit. We just got people out of hotels back into their homes in Lake Charles on a Friday about last month. And then on that Monday, the same people were evacuated because of flooding in Lake Charles. So we're seeing a lot of this and also too, they have another tropical system that's

028about to hit them in the same track. So we're seeing a lot of, I guess, fatigue, a lot of fatigue around the communities and especially too with like, you know, around the autism community about the, oh, you know, there's just so much. It's a popular routine now, if you're constantly evacuating or being impacted by these disasters. So that's even though I know New York, we haven't really been impacted knock on wood. However, though, that's some planning that I that really needs to start having that conversation now as climate as we're really seeing those effects of climate change. You know, while the hurricane season got moved up by almost a month this year, wildfires are already starting out in California. Those usually start in July. So, yeah, like we're gearing up for just being in a

029constant state of response when usually we have, you know, these seasons. So that's something that I think we really need to, and not just the autism community, just the disability community in general. That's some very important conversations that we need to start having now. you know before the next Hurricane Sandy or something like that hits New York I fully agree on that well I don't think their response for people with disabilities I don't know I don't really follow on those things but do they really like really help you with disabilities because I don't think they really I'm not really sure don't don't don't count on me on anything really I don't know any information about this but do they really have uh like their response with people with disabilities is that good or do we

030need to talk about that too um to be very honest we do need to talk about the uh there's a lot of issues and responses um you know this year we didn't see as many issues um as we have in the past because we were generally the um all the disasters were using hotels And hotels are generally accessible, right? They have accessible rooms and people could actually keep a. Keep a great amount of independence. However, then when you're using congregate shelters, where everybody's like, jammed into gymnasium on cots, it's a lot different, right? Because there's no privacy. There's a lot of noise lights, stuff like that. You know, we still did. Give out quite a few sensory kits this year. And however, though, we haven't seen the major issues and also to, we've done a

031lot of education. So, like, like, for example, service animals, we didn't have people now understand that service animals are allowed in shelters. However, assistance animals are not. Or emotional support animals are not. Stuff like that. There's been a lot of better education on that. There's also been a greater response to. Well, after paradise about evacuations, which are, which are not done by the right cross, but evacuation planning, you know, there have been, however, though, I'm not familiar with New York. I don't know if New York's done anything around that because we really haven't had any major disasters to really look at. But just kind of speaking from my old fire department, you know, they don't. You know, there's not really much there wasn't that much discussion about evacuations granted though. You know, we don't really

032get flooding. Um, uh, where where I am in Loudonville, but, uh. But that's what we need to there needs to be some. Some planning around. Yeah, and so I don't mean to interrupt because this is really good back and forth. 2 things number 1, I know commissioner castner jumped on a little early. So, I wanted to make sure that we could get to him quickly knowing how busy his schedule can be. But I wanted to just close out this part of the conversation because I think it's really valid. Everything that's been said so far. Paul, Mike, Sean. Josie, we have a recommendation that we had added in the report. In 2021, which was about the citizens preparedness corps training for residents and we were, we had said that it should include information specific about people

033with developmental disabilities, autism spectrum disorders and so on. I think maybe we could tweak that to add some of the things that you're saying about making sure that our emergency systems, whether that be first responders, police, fire, as well as frontline healthcare workers. So, when I think first responders, I think of all of them, not just police and fire, but also people in the emergency departments that we look at ways to broaden the education that we're doing about people with autism spectrum disorder. So that would be. You know, Greg, if that sounds good to you, that would be my 1 suggestion coming out of this conversation. Yeah, I'd actually almost put as a separate recommendation. I'm just thinking because they're kind of 2. You know, like, the trainings are going to be pretty different between

034the 2. so, like, 1's kind of more family based. And 1's more or or if you. But, but again, that's just kind of my, my, my take on it. Or, you know, we can modify it. It's just, um. It's just, I think there's different agencies involved too with all that. Yeah, ones that aren't necessarily currently represented. On the members, yeah, so Greg, maybe we can talk about that and what what you think would make sense for the report and we can send it back out to. Our thoughts back out to the to the board members. Okay, also I'll offer if you if you need any, you know, feel free to loop me into. I could give you a little more of the dynamics of who. Who does what and stuff like that. Yeah, that'd be

035great. Yeah, I will definitely reach out to you and I plan on reaching out to you to work to get the last recommendation implemented as well. And I was going to have your expertise. So thank you for offering. Well, thank you. Great. Well, I am very excited and privileged to be able to introduce the commissioner of that. I know many of, you know, the or castner he has joined us today. I don't actually have his bio in front of me, but I remember when I 1st met him, I was very impressed with his background. So I'm glad he was able to join us. So commissioner. Thanks Courtney. It's nice to see you again and. Thank you for the opportunity to be here and talk about the. The planning process that we're undertaking. We go to

036the next slide, I'll be walking Josie along through as we go with this, but. We are simultaneously undertaking 2 processes for collecting public input. The 1st relates to the 507 plan. Which you may be aware of 507. A plan is a requirement that the mental hygiene law. Requires us to develop it's a 5 year comprehensive plan. That is updated annual. requires that we engage families, individuals, providers, governmental units, and all of the stakeholders that we work with to help us identify the priorities for what we want to accomplish in the next five years and also the means of trying to get there. Next slide, please. Just to figure, we've also in the last six to eight weeks received notice of the availability of funding through the American Rescue Plan. I mean, you're probably aware of

037the fact that we have access to what are called enhanced FMAP funds. The federal government is increasing the availability of the federal match to support our system, and we will receive a 10% increase in federal matching funds to invest over the period of approximately three years to create some sustainable improvements in our delivery system. For a system of our size, that is the equivalent of roughly 740M dollars. So, we have a very quick turnaround on a process for creating a set of recommendations on how to make those investments. We'll be looking at this process as a means of collecting input for both of those projects. Recommendations and the 507 planning. But, as I said earlier, the turnaround on the enhanced federal matching funds is very quick. We have until the middle of June. To submit

038our recommendations to the. New York State Department of health, and they have to go to Washington as a comprehensive package. By the end of June, so again, it's a quick turnaround. We'll be looking at our system vision and goals, using the 507 to create the roadmap for the next 5 years and producing updates annually. And we want to work with you in terms of achieving those visions and goals. Next slide please. So, our objective is to use both the planning processes to create a system that improves the ability of people with developmental disabilities to have meaningful relationships with friends, families, and others in their lives, to experience personal health and growth, and to live in the home of their choice and fully participate in their communities. Next slide. We are going to be focusing on

039several broad themes, which kind of under Under a grid, all of the issues that we're going to be developing. We need to look at ways that we can build a system that. 1, unprecedented growth that we've really seen in. Op WDD services over the last 5 to 10 years. You may be aware, for example, that in 2019. We increased the ceiling in our waiver. For the number of individuals who can participate. From 85,000 to 102,000. So, between 2019 and 2024. We will be increasing the number of individuals who can participate in. Opioid services by 20%. 17,000 people to an average annual growth rate of 4%. If you look at specific programs within our delivery system. Some programs are growing very, very quickly. Self-direction is a great example. Over the last five years, average annual growth

040in self-direction has been about 35%. In the last year, we increased the number of individuals participating in self-direction from about 20,000 people to about 24,000 people. And we expect that growth to continue. And it's important to recognize that we want to sustain our programs, but we're going to have to look very carefully about how we prioritize services, where we can obtain funds to invest in services, and whether or not we need to make changes in the way our service system is designed and organized in order to be sustainable. We are also very, very concerned about the diversity, equity, and inclusiveness of our system. As you may be aware, we've worked very closely with the governor's office through Greg. To increase the representativeness. Of our advisory committees, we believe that it's important that our advisory committees

041look like the people we serve. And as a result, look like the rest of the state. In terms of its representativeness, so we've outreached to. Communities that have been. Less than fully represented in our processes. We think the new membership of our committees is going to give us greater insight into our local communities and how we can be more. Inclusive and equitable and how we allocate resources. A good example of. Of equity in resource allocation relates to what would be planning in the next 6 months. Around our residential payment methodology and a redesign. Of that methodology as you're aware right now, we. Use a cost based reimbursement model for our providers. They tell us how much it costs to provide a residential service. And we generally try to make them whole in the provision of

042that service. Unfortunately, that does not always match well with the needs of the individual. So there are some high cost settings that those with high needs who can't access services because we can't pay the providers the amount of funds that they need to support those individuals. So we'll be looking at changing our system over the next year to focus on rates that are based on individual need or individual acuity. And we think that that's a more equitable way of distributing resources related to residential services. We want to improve accessibility and flexibility. We also want to support people in the most integrated setting possible. And we're going to be looking at opportunities in these 2 planning processes to deliver services more flexibly. Next slide please. I'm not going to go through all the workforce challenges or

043all the systemic challenges that we face. I will say that that obviously COVID 19 was something that was incredibly challenging for all of us. And in addressing and responding to COVID, I believe many of the weaknesses in our system were exposed. We've already completed a good portion of our work with stakeholder groups and I can tell you that it would be no surprise that workforce availability, workforce stability, workforce quality is probably the greatest identified need across our system. It cuts through agency provided services, self-directed services in our fee for service system. Our DSP workforce really took a beating last year. It was very stressful work. We entered the system with a workforce that was undercompensated with high rates of turnover. We're finishing this wave of COVID with an even greater need to stabilize the workforce,

044among all the other complex challenges that you can see on this table. So we have a lot of things to look at and to consider as we go forward. The next slide please. As I said, we'll be looking at workforce development. This is a table really just to give you some ideas of the things we'll be looking at. It's not meant to be exhaustive. It's not meant to be directive. It's simply to tell you that these are the things that we quickly identified as content areas that we need to look at. The process of soliciting input from all of you. either flesh out these ideas or to identify new opportunities where we can make improvements. So as we talked about workforce development and stability, flexibility in administration of our services, enhancing our efforts to look

045at diversity, equity, and inclusion. We're going to be looking at housing supports as part of an overall redesign of our residential portfolio. Looking for opportunities to use technology, create incentives for our providers to align with the goals that we will be articulating as part of these planning processes. We recognize at this point, we have to look at day programs. And employment services, I think fundamentally changed the way that. The public, our stakeholders view center based day programming. And we have to begin to look at that. We're looking also at the state operations system as a safety net, providing services to people who can't otherwise be served in a voluntary setting. And as I mentioned earlier, looking at the American Rescue Plan for one-time investments. Next slide. Just to go through the American Rescue Plan, those

046one-time investments, the federal government is making funds available to support home and community-based services. The one time funding is probably in the order of 700 to 750 million dollars. The challenge in spending that money wisely is that it is one time funding. And it'll be based on the billing that occurs in this fiscal year between April 1st and March 31st. And based on the federal guidance, we'll have 3 years to. Allocate and spend those funds, but they're 1 time they're not renewable. And things that we're hearing from stakeholders. Are often recommendations about making changes that are permanent. And any permanent change we want to make in our system. Using enhanced federal matching funds will be very, very challenging. We have to find a way to. make a permanent change in our system, reallocate funding, and

047without an increase in funds that would come at the expense of something. So it's going to be a real challenge. Next slide, please. So just to walk you through the stakeholder process, we had been planning to engage all of you and our stakeholders through the 507 planning process. And about again, 4 to 6 weeks ago, when we learned about the enhanced map and the American rescue plan. We modified the process to give stakeholders an opportunity to talk about both. There are 3 different processes that we've used to outreach to our stakeholders. The 1st was we held 5 public forums. We've completed those and we are in the process of. Looking at what that data tells us, those forms were designed for individuals and families. We generally don't have access to to advocate directly to. Many

048people rely on. Some stakeholder group, whether it's a family group. Provider group, a general advocacy group. And organizations like yourselves. But this was an opportunity for individual people to tell us how they felt about their lives, what they value. And how we could use these opportunities to improve that. So, we've completed the 5 regional forum. The 2nd process for us to solicit input is through. A general mailbox, which I think is appearing in the slides later. Individuals and stakeholder groups can send us. Their specific recommendations through the mailbox. And then the 3rd process where we will be soliciting input. Is with approximately 30 stakeholder groups of which yours is 1. And those are probably halfway through at this point. So, we've got some general ideas of of where our stakeholders would like us to go.

049But I'm particularly interested in what you have to say. Because there are not many forums, which. You know, focus specifically on the needs of people with autism or or people who are on the autism spectrum. So we will be continuing to solicit input through the summer. In particular around the strategic plan, we'll develop a draft document. I hope in September, which will allow us to solicit another round of input. And hopefully deliver the final products to the legislature. In November. So, next slide. Next slide. So, just to identify some of the content areas that we think will be important, but certainly not to diminish areas that you'd like to focus on. The growing demand for services and supports, as I mentioned earlier, we see a significant wave of eligible individuals applying for services. We've had

050to expand our waiver and lock in about a 4% growth rate on The numbers of individuals who participate, but that number could be higher depending on what the demographics tell us. Next slide housing housing right now represents about half of our, our, the cost in our portfolio roughly spend to make the numbers round. Roughly spend 10Billion dollars and 5Billion dollars of that is related to housing. So, predominantly we rely on. Provider directed housing. We want to expand the variety of housing supports. Certainly, we want to support our providers in their efforts to deliver supervised IRAs and ICFs. But we also want to expand opportunities around supportive IRAs, family care, independent living, and other types of housing opportunities that many people currently Wish us to provide, but we're not really able to do that at the

051moment. So we'll be looking at housing supports. We want to be able to support everyone, which includes people with complex needs. Those would include individuals who leave hospitals. Institutional settings out of state residential schools. We will explore the use of those federal funds. To provide incentives for providers. To identify individuals who might want to live in a less restrictive setting. And to help them make that transition right now, the individuals who have the capacity to live independently. Might represent a population of folks who. An agency would prefer to keep in a more restrictive setting because of the reimbursement issues I described earlier. So we want to kind of break the cycle of provider agencies. not offering more inclusive housing opportunities and use our federal funds to stimulate that. Again, create independent housing supports, shared living

052models and similar opportunities. And for those individuals who are really highly complex moving from out of state to create opportunities within our state operations footprint. Next slide. Now, day programs, as I said earlier, have probably changed in a permanent way as a result of COVID. Now, you'll recall that on March 24th of 2020, I'm sorry, March 18th of 2020, we closed all of our center-based day programs. That resulted in 30, I'm sorry, 55,000 people losing a center-based day program. And we quickly came up with alternatives to address the need for. Individuals to have meaningful activities about 35,000 of those 55,000 people. We're then able to receive a day program service in their residence. Through a program that we called com have our community community habilitation are. That opportunity to deliver com have our was put

053into our permanent waiver. And we just received approval from the feds last week. So that is an opportunity that individuals will have on a permanent and ongoing basis. That is very likely to decrease the need for center based services. It's not meant to replace it. It's simply another opportunity or option. For people to be able to access. Day program services that meet their needs for the other 20,000 people who were most mostly living at home. And lost access to center based day programs. On March 18th of 2020, we permitted the delivery of. Com have through remote means. Sometimes called telehealth and that give individuals an alternative to a center based program. Again, telehealth, teledelivery of ComHab is not for everyone, but for some people, it was a better option than receiving center-based care. So we

054don't think we're going to see the same demand for day programs, center-based day program that we saw prior to COVID as we now emerge from the COVID pandemic. We need to look at both day program and pre-vocational services. We want to focus on how we can improve vocational skills, promote independence, and increase community inclusion. So we're hoping that our federal funding in the short term and the 507 plan will help us identify more opportunities for vocational experiencing for meaningful work or for volunteering. Next slide please. Aligned with this is again helping individuals with developmental disabilities get work to be employed and to recover the opportunities that I think were lost with COVID. This would be an area again of short-term investments through the enhanced federal matching funds and a long-term commitment in our 507 plan.

055Next slide. Self-directed services, I mentioned earlier We are committed to self-directed services. We believe that self-directed services are important for people to help decide what services they want to receive and to be able to obtain them. We're experiencing very significant growth in the self-direction program. We are certainly open to looking at short-term opportunities to look at improvements within the self-direction program. And at the same time, as we look out five years, and we see the phenomenal growth in self-direction, we have to go back to those core principles that we outlined at the beginning of sustainability, of equity, and access, so that we can be sure that we're delivering self-directed services to everyone who can benefit, but also in a way that we can sustain that growth. Next slide, please. We are also looking at children's

056services and the need to support families. I think 10 years ago, if someone looked at OPWDD, they would believe that we are largely an adult-serving organization. The fastest group of individuals enrolling in OPWDD services right now are children. About a third of our eligible individuals are under the age of 21. And we are seeing remarkable growth in enrollment of particularly young children. For example, we have more than 1,000 children aged four years who are in OPWDD and who would like to access services. We believe most of those individuals may come into the self-directed program. And we again expect we'll see significant growth pressure. We want to find out how we can best meet the needs of children and their families, particularly around crisis supports, behavioral supports, to avoid hospitalization, and to make residential placement the

057last choice and provide alternatives that will help stabilize and support children in families' homes. Next slide, please. We are looking at, again, clinical service redesign, crisis support redesign, telehealth. Was an element of our permanent waiver application and again, as of a couple of weeks ago. Is now a permanent part of our waiver. I'm just going to check the chat room. I see some things flying by. We'll be looking at safeguards that we can use. In in terms of our to ensure that when services are delivered remotely. Through tell her health, whether they're com have or. Respite that they are. Desired by the individual that the individual prefers to receive services remotely. And that individuals are protected against the inappropriate use of. Of remote delivery of services, which might deprive them of an opportunity to participate

058in their community. So, we'll be looking at the delivery of services. We're also going to be looking at kind of. Filling out our crisis response system. As we have been operating the start program. In 4 of our 5 regions. We hope we can use the short term federal funding. To fill out the rest of the network in particular region 2. We receive funding for a crisis response team. And a resource center. In region 3, which is Hudson Valley, we also need to fund a resource center, but. Again, we hope those would be opportunities we can address in the short term. Next slide and care management again, we want to look at some performance metrics for. Our care management system, we want to be sure that they can help all people of all needs. And at

059every level access the services that they require. We will be trying to create a set of metrics to look at, you know, very basic metrics, including the ability of CCOs to produce life plans in a timely manner and to help people access services across the continuum of both health and long-term care. We also want to help our care coordinators and improve their ability to manage people with complex needs. Next slide, please. Again, I've talked a lot about the workforce we are looking at. Matter ways in which we can help to stabilize the workforce, whether that's in. Salary increases training credentialing. We're going to be hopefully looking at efforts to reduce turnover. We think we can't really do. We can't do anything without a. A stable and qualified workforce. So we hope we're going to hear

060recommendations from you and from other stakeholders. That this is a priority next slide please. So, as I mentioned earlier, 3 mechanisms by which we've. Made ourselves available to receive input from stakeholders like you. The 5 regional forum have completed. But there is still the opportunity to send individual written. Testimony or recommendations through our email mailbox. That address is planning at dot Gov. And as you can see, by today's effort, we're in the middle of our stakeholder outreach. We'd be very pleased if you would provide us with a document on behalf of your group outlining where you think the priorities should be for both short term, enhanced federal funding investments, and also in the longer term strategic planning that we're doing through the 507 effort. So, I think that is the extent of my presentation. I

061really look forward to hearing your feedback in. Either email documents or in a. More comprehensive document from your your group and I think I'm closing at this point. We're not taking questions. But we're really looking for your feedback at a later point. So. Thank you. Thank you so much commissioner and thank you to you and the team and all the work that you put into this process thus far. So, now it's and now it's the public's turn. It's our turn. And I think Greg, we were wondering today, I think we're not going to really discuss it that much today's meeting, but we wanted to discuss how the board members prefer to have their input provided on the plan, whether that's as individuals or as formally as the board set. Right? Yeah, that's right. I wanted

062to get some feedback from the board. Some of you may wish to submit some ideas by yourselves as individuals. Some of you may wish to get together and put a board response together. So I want to help facilitate that along with Chairperson Burke. Really, it's up to you. But I think we're here to make sure that the Autism and Disorders Board has an opportunity to weigh in. So, you're very important to us as well as the public that's watching this. Hopefully they can see the email address there and everyone's encouraged to solicit and put in. So, I know for me, it was a lot to digest and I'm happy to share my, if I have thoughts with you, Greg, directly. I want to make sure though that my thoughts are reflective of the full autism

063spectrum advisory report. So, I'm either going to speak individually as Courtney Q public on my own, or if I think it's relevant to the autism spectrum advisory board, I would, if I was going to wear that hat, I would want it to have the rest of the boards input. I think we need a private conversation with all the board members or any part of the autism spectrum. Oh, my goodness. Why can I not think right now? Wow. Okay spectrum. I think we need to talk about this in private and we really talk about it because that was a lot of information in 1 setting. So I think we need to break it down a little bit more for us. In my opinion, I'm going to drop off at this point. I appreciate the opportunity to

064have met all of you and. We look forward to working with you in the future. So, I will see you later. Thank you commissioner. Bye bye on the previous response. And to your point, I think there's a lot there to digest. I'm wondering if you need to have. What are those sections more than another that was spoken? I'm wondering if we could somehow break it up in the section. Board members who's interested in kind of addressing which part of it. And then maybe form little subcommittees a little subgroup. To address with interest level may lie and then formalize a response that way. If possible, does that make sense? I mean, that makes sense to me, Greg. I don't you know that better than any of us. If there's a way that makes sense. Yeah, absolutely.

065We can work to accommodate how the board wants to wants to do this. That sounds like a reasonable idea. At the conclusion of the meeting, I can send out or the next day or so. I can send a copy of the PowerPoint as well as links to as a spots for data and information that board members can get more background information. And then we can schedule a meeting or 2 or work through emails. However, you want to do it, but, you know. We really want to make sure here's what the board has to say. I agree. Same Greg, I was part of the New York state CP. Provider group, and we had a set of questions that were sent to us that maybe as a starting point. For the board here, if that would make

066sense or not. Yep, great idea. Mary. That's what I'll do is we'll follow the similar if you found those background materials helpful before your meeting. Yes. Here. Okay. It broke it down into smaller pieces and allowed people to. Answer questions that were pertinent to them and the individuals and I did feel it was more digestible. You know, I've heard this a few times. I've also been on the. Western New York finger lakes meeting with the commissioner. So I think that would be very helpful. Okay, because there's so much so much information. I think we need to break it down because I have a lot of thoughts, but I don't know where to start. That's my problem. If that makes sense, it does Kristen and we can, we can work to make make sure that this

067input process works for everyone on the board. Okay. Well, that was a helpful input. Thank you. Greg for taking on that task and Charles for the suggestion. Anything else on on the 507 plan before I just want to make sure that we have wrapped up the conversation on the board report before we get to the public comment period. We good on 507 Greg I think so before we want we go to the. Public comment, though chairperson breakfast. Okay. I do want to mention to the board that there was another piece of late breaking news. Regarding legislation, and the legislature had passed a bill that would expand the duties of the autism board. And so I will send around afterwards a copy of that legislation and we'd also like to get feedback from you as well.

068Good to me, I'll read it. Can you give us the short version now? Yeah, so the short version, it, it, um. It was kind of a thing that came together at the end of the session. I believe that the legislation would. Ask the board to go out and do public relations campaigns, et cetera. It would also said that the board could distribute grants based on the money that the legislature gave it to distribute. But the legislature never gave any never put any money in it to distribute. And so I have to reach back to them, but it appears that they. They're putting a lot of work on the board and as you know, we don't have any resources to carry it forward. So that's some of the things I would like to hear back from

069everybody about. About time. Sorry, but I have to see about time because I feel like we're like, hidden. So I think it's great that what our faces can be shown. I will make a will be able to make a difference and saying all different people, female, male. You know, like, different kind of people. I think it's going to be I think that's going to be awesome in my opinion. Okay. Are there any ideas of how this. These presentations are these public speaking with occur. It's pretty vague. I think it just said to the board, she'll do an outreach and information campaign. You know, but once again, with without any resources, you know, that that could be kind of difficult. So that's why I wanted to get people's thoughts. Could this be an opportunity where we

070can maybe provide some. Employment opportunities. I know it didn't, you know, there's you said there's no funding or anything like that, but this might kind of be an opportunity where we could. You know, provide some employment, especially to. Some of these campaigns, or to develop some of these campaigns. Yeah, I think we can, we'll have to be creative should it get signed into law. But we can, we can discuss this and, you know, what, what the board's position on this is as we go through the 507 as well. But, yeah, thanks. I'm not afraid of speaking. I'm, I'm, I'm up for the challenge. Well, same, I know I've given a Ted talk about autism advocacy and how employment really benefits autism community and also the employer. So this sounds great. And also about the thing,

071which I said in the very beginning. Like, you know, pretty much like letting people know that there is a board like this fits. Perfect with that, and especially if we're going to be given that type of stuff, I mean, like, you know. You can start thinking different ways, like, through social media outreach. Um, and things like that, so there's lots of opportunities here now to redo that and dive deep into, like, people know that there is a board and that people in government are there for them and that they have a voice. Yep, and I do also want to mention 1 thing that we can try and pull something together with or without the legislation. So there's, we might be able to do some things that are tailored to the board skills and time constraints

072as well. So, you know, we've got a lot to work on. Thank you. Josh. Excited. There are also conferences, you know, there's the conference, there are other organizations throughout the year and so on that hopefully will be in person soon where we could do a presentation. And that might be the idea to get the board's recommendations out there to the public as well. Steve. So, you know, good thinking. The difficulty of this and the difficulty in these. As of advertising campaigns are that the people that we really need to reach the most are the ones that feel most isolated in this situation. I think it's a fantastic idea to reach out to these conferences and other things like that. But again, they need to emphasize how creative we need to be. Because I can vouch

073for at least my family, we felt very alone. When, as I was growing up with autism, however, we found out years later that they were neighbors that that we're going through similar situations that we never even knew. So. While we can focus on where. Autistic individuals are congregating we need to also factor in. Larger aspects of. schools and other things like that. In other places, we can get larger groups of people that may not be fully comfortable in sharing their experiences on the autism spectrum. I agree on that. That would get us not only more people, but that would get us a group that needs more significant help than those that are already acknowledging that they need said help. I understand the difficulty of the suspension. You know, I'm not going to try to pass

074over that, but I think that's where we need to keep our heads at. I agree. Like, that's a good idea. Maybe we can try to get some commercials. Or I don't know, like something to hit the people with autism. Like, that's actually a good idea. I have to think about this and I'll talk. Maybe we should also do a focus on families too. If we're trying to, so like, so we're not trying just to focus on the people with autism, the family itself, because as you said, they were, they did feel isolated. So maybe if we can show that. it's okay to have autism the families is okay if your child's like this and everything and these other supports are out there for you or something like that okay that makes sense to me greg

075i want to talk about it figure out a plan i think for for all of this since it's late breaking news how we handle it definitely sounds like we have some volunteers though on the group who are interested in helping out And figuring out how we get the word out and me speaking. Speaking, I'm getting better at it. So. I'd be happy to participate in some way. We work together. Sorry, somebody else was trying to speak. I was this is Mary. We'll speak. I don't know. It was Charles. Were you talking? I don't want to interrupt you. No, no, I would just say also be interested in volunteer. When I was listening to the. Commissioner speak his comment that struck very good nerve in my body was workforce is a priority and I am here

076for so many parents talking about how it affects. Everyone takes a village. We all participate. We all help out the workforce. The transition from school to the workforce is a major hurdle. For many individuals on the autism spectrum. Can the state do some kind of incentives to corporations to companies to change their methods of hiring? You know, we're talking about. Individuals who are very qualified, they finished their master's degree and still can't get a job. They. They don't do well in interviews. If an interview process can be looked at and in the hiring process be looked at differently, I would love to see a change that the state would give companies an incentive to make that leap. Is that possible? I actually would defer to I don't want to put anyone on the spot, but

077I believe. If this salon Myers rough here from state education department salon, I don't know if you had any comments on that. You're really an expert as well. Josh, you just joined the board, but salon is there anything you could offer. What I was thinking, hi everyone, this is actually my first meeting, so I'm new as well. What I can say from my time at OPWDD that there are a couple of tax incentive programs for employers to hire people with disabilities. Do I think more should and could be done? I would say yes. It wouldn't hurt to take a look at what some other states are doing around creative incentives and building relationships with businesses. And I believe in the context of the MISC, this may already be on their list of things to look

078at. The employment first commission, which Courtney also was very active and also made some recommendations. So I think there's kind of a blueprint that exists. I think it's just a matter of implementing it and putting it into place. Well, I think that's great, but. It's urgent. You know, it's something that is on a daily basis. People are looking to gain independence. And of course, with independence, you have to be able to support yourself. And it is a critical, critical need for many, for many, and they can't get to that spot. Well, there are companies like Microsoft and Google that have specific programs, hiring and mentoring and those sorts of things, where someone can go into an interview and not... They won't take into account communication issues. So, if we can broaden that and incentivize other

079companies, and not just tech companies, because it's a stereotype to say, well, all people on the spectrum are really good with technology. I'm certainly not 1 of those people. I'm not a math geek. I'm not a technology geek. I. I'm okay at running my little organ nonprofit and I'm creative and I like to do arts art projects, but I'm not a computer geek. So there has to be stuff incentives for companies that. Aren't tech companies, they could be museums. They could be organizations that are involved in things. Other than technology, and also other than having people with master's degrees, stocking shelves. So well, so well said so well said thank you very much Steve. I appreciate your input with that potentially. Launch and. An education program for employers, bring forward the top employers in New

080York state. And just give them some sort of information session about those on the autism spectrum and those with invisible disabilities. Showing them the successes that people have had as well as. Alternative interview processes for those that identify that they are on the autism spectrum. As they apply, so. In that in that sense, rather than trying to get a bunch of large companies or a bunch of other groups to conform to 1 idea that may not match with their business plan, be able to work with them in a sense. With their own business plan and show them the, these individuals potential that they might not be aware. So that they can go about demonstrating the, um, the strength of these employees in the best way possible. That's great. Sean. I, I really agree with you.

081I think we just. You know, hit on a very important subject and very important topic that will affect, you know, be life changing. For many people, it could be a life changing event that can set the tone for many other people and for the country to see, you know, how. Useful and productive and intelligent and creative. you know, people on the spectrum law. Sorry, may I just say something? Not even the people with autism, people who are in wheelchairs, people, all different disabilities. My brother is a quadriplegic. He has his master's. He had to hide his disability so he can get a job. Yeah, yeah. So that's still like... A lot of things I don't think we just spoke on the job. I think we should focus. Not on people with autism. I mean, that's

082what we are. But we should also focus on. Non artistic all the everybody. Yes. So, I sense a coalition of ideas that people, maybe we should put something together for a future presentation to the autism board about what current incentives exist in the state and what some of the other state and other quasi governmental bodies are doing. About employment is as wonderful. You know, after 18 years old, or I have to college the drop off and. Those adults need the support a great deal. Okay, we can do that. I do want to throw in there too. We should also talk about the discussion of to disclose or not to disclose. Again, this is a personal experience that I'm going through right now. Actually, even with an organization such as the Red Cross, so I volunteer,

083I deploy all over the country. You know, I've been looking for emergency management jobs and the one job that I didn't check the box saying I have a disability is the one job that I got an interview for out of 34. Even though I have the qualifications, I have the background, I... Manage large scale disasters. The only job I got was the 1 where I didn't check the box saying that I have a disability. So. That's powerful Mike. Thank you. And that's so messed up. I think we, if you have the quality, the quality. You're able and you're qualified for it. I think they should just not look at disability. I think they should be working with your disability, not just. So you out because you have a disability, I think that's full messed up,

084but we, as we all know people would not disable people think we're stupid. I know so. Very frustrating to me. Well, I think that that question should not be allowed to be on a job application. There are other things like they remove the question about having a criminal history, I think, on job applications in New York state as well. So, well, actually, so so the thing with this is that this is actually a federal question that's required if you receive. Any contracts or grants from the federal government so from FEMA. So that's why a lot of the emergency, every emergency management application has that on it is because almost every single company, like, booze, Alan, all of them receive federal funds and it's a federal requirement to ask that question. Now, I know just to

085not check the box. So that's what I'm going to do going forward. But. That is something that, um, you know. So, so there are some federal laws that we might that might we need to advocate to change about that. I think what's interesting about that challenge is that the reason why. The federal because there is a federal requirement. That contractors hire people with disabilities, so the fact that this ability is supposed to be hired, you're checking the box, but not being hired. I don't think the issue is the question. I think the issue is the businesses. I think it goes back to the larger. Recommendations that were made about the need for more public education and even holding businesses accountable. Agreed yeah, and again, it also up to that individual to that's doing that initial

086screening. So, I know, like, the Red Cross, we contract out for that. So it's not actually a Red Cross person doing it and they have no idea my background just what they see on the form. So that's, you know. So, yeah, so maybe some magic. Yeah, it's definitely that education component. 1 of the things that access does do as part of state head is. etiquette training for businesses that hire people with disabilities. Because I think that kind of gets to your point around, you know, whoever that frontline person who's screening staff, they need to be able to see the disability as a person that's coming in with some unique skill sets. All skill sets can be utilized in a job setting. It's just how do you do the right match? So, again, I think it

087does speak to training, not just general training on how to hire people with disabilities, but it might need to get a little bit to get a little bit more granular on how do you match skills with things of the business. Perhaps a key feature to the, the outreach public speaking could be either directly to. Companies and public organizations. To for us to directly say, this is who we are, what we do, what we're able to do, what accommodations we might need. Of course, when it comes to accommodations for every single person on the spectrum that is seeking employment, their accommodations are going to be. Very different from 1 person to the next and I think that's an important message saying that we're very capable. Again, someone mentioned people with master's degrees or PhDs that can't

088get a job. I've heard up to about 80% of people on the spectrum were unemployed. And that's not an acceptable number. And I think that that's something that can be addressed through the public speaking, the outreach part of it. I agree with you on that. I know. 1 of the things I spoke about in my Ted talk was that, like, the extremely grossly high unemployment numbers and this is before. So. And it just, it feels like most of the public, like, this is brushes on the road. Like, oh, that's not my. Cousin that's not my kid. That's not me. So we're not going to look at it. So I think, honestly, one of the main ways to fix this, because I view it as a societal problem, is through media and social media. Because normally

089what happens when people see things, a message on media, and they see it over and over and over again, it gets to their subconscious, and it gets to their conscience, and they start thinking about it. And it becomes real to them because they see it every day. Just like if they had a cousin who was in the same story every day, they'd see that person every day. It's real to them. You see that in the media every day. It is real to you. And then you want to help because it affects your life personally, or at least you feel that way. So I feel if we get this, like, I keep saying, if we get this board into, like, maybe media, somehow our message into the media. We can really in a different way, really

090impact even more people. I get what needs to be done done and more effectively. So, so, sorry, I interrupted somebody go ahead. I really want to emphasize that while all those media campaigns are great and can really go towards that long-term change, I think the fastest change that we'll see is if we can work with New York top employers first and work on education campaigns with them specifically because other smaller industries will look towards them as leaders and look towards them as what are What are they doing and if we can focus our initial education campaigns. Towards them, whether that just be invite certain representatives of them to meetings with people on this board or. Introduce them to other businesses that have already adopted alternative models and have seen success with it. If we can

091facilitate something like that, as opposed to just launching a. Large wide scale campaign immediately, we might be able to jumpstart this our success and be able to. Address this issue quickly before we go to the broad. The broader spectrum, which could realistically be shot in the dark until we left. May I say something if we're going to do that? I think we could also hit. schools, like start them very young, teach them about disabilities, how different, but not too different, you know, like, that's where the problem is. It's the kids, because some of the kids don't even know about disabilities. And that's how bullies start. And And they're not accepting of the people with disabilities, Kristen, which you had schools, Kristen, you hit the nail on the head, Kristen education at the earliest level 3

092year olds 4 year olds. It will. change society. Exactly. And how they see everybody as having abilities, not disabilities. Exactly. It has to start in school. That's where the core of the moral fiber of our society is developed. It's developed in school and it's got to be part of a curriculum. It's got to be part of... Everything that they do and think that all are equal and have gifts to give. Our brain just works a little differently. Not anything different. Just our brains work differently. Exactly. Or our bodies work differently. That's really the issue. We might need a little bit of support, but we still can do what we want. And we just want to be accepted. That's it. Absolutely, and through education, which has to be mandated. Because it can't be just, you know,

0931 teacher says it another teacher does it and it has to be part of a state curriculum. I don't mind going into schools and talking to kids. I was my actually 1 of my goals. So I don't mind just doing that too, because no, I know. Look, yes, I'm disabled and look what all the things I have done in my life because. of what the struggles and all the successes too and i could think of everybody in this board can do that i think if we if we can show what we can do i think we can make the change in the society by the kids Well, I think a lot of this was what was part of our very 1st recommendation in the report, but not this level of detail. And I think we've

094had some really good input on it today. And we've got now that we have new legislation. We have more of our own mandate to to do this, but it sounds like many of you are more than willing volunteers to help. Think about how we do this and actually be some of the people who do some of the education yourselves. So that's pretty great. And I wanted to make sure that we have enough time for the last part of the agenda. So I didn't want to cut off the conversation because it was so good, but I wanted to maybe turn it over to Greg. At this point. Because I'm getting pulled to another meeting to 1st of all talk about the public comment period, but make sure that we have all of the to do's from

095today, which I think include. Adding a section 1st of all to the board report about training of 1st responders that includes fire police people who are in emergency departments. Secondly, we have a group of people who want to provide potentially some input on the 507 plan that the commissioner presented. 3rd, we definitely want a conversation as well as a presentation about action steps on employment. And lastly was a conversation about more public messaging education and all of that. So, hopefully I caught what those are, but. Greg, did I catch it all? Because I'm going to turn it over to you at this point. Yep, that matches my list. I've got a few more details on there that things the board members that asked me to send them and I will do so hopefully within the

096next 24 to 48 hours. So we can get a jump on. So, at this point, as chairperson said, we do want to open up for a little bit of public comments and I believe I will over to Josie who is. The technology here and can control all of these devices in front of us. So Josie, if you're ready, I don't know if we have people of the public have hands up or not. So I'll leave that up to you. Thank you. Thanks guys. The 1st person we're going to call on is a member of the. His name is Robert, and he just wanted to speak to the board. So, Robert, you are unmuted. Oh, that's great. Well, thank you so much for the opportunity to speak to the Autism Specialist Board. My name is Robert.

097I'm an attorney in private practice in the Hudson in the Hudson Valley, supporting those with special needs. Plus, I'm also a special needs father myself. I did I'm a new member to the D to the D back and did have the opportunity to speak with Craig. That's my ideas in terms of the. Eligibility, I'm so encouraged and enthusiastic about the conversation that's happening at this board. These are conversations that I've had with my clients with organizations locally. And I think that there's a tremendous synergy. I did have the opportunity to. To share a. An email and discussing expanded eligibility for artistic individuals, especially those that are quote. High functioning, I think it was shared with the board, but. I wanted to have a quick opportunity just to just to just to read some of that.

098I think some of the, you know, a lot of the comments that were made on this. On this. Call a sort of a reflected here, but this is this is an important issue to me personally and also on behalf of some clients. So. The issue relates to the criteria for front door eligibility. As I wrote, I know that the criteria promulgated in accordance with Medicaid waiver requirements. However, it's quite apparent. That these requirements have left out thousands of individuals from the umbrella services. As a father of high functioning, autism, autistic child. formerly Asperger's, our families acutely aware that our children can enjoy a wonderful and productive life with the right supports. As Kristen just said, with a little bit of support, those with disabilities can do what they need to do. I represent families in

099my legal practice that fall into this population. But based on the current system, I think it was mentioned before, children that are in this category will, quote, fall off a cliff, unquote, when they leave the public school system. And we know that there are state services that are available in OMH, SED, and Access VR, as was also mentioned. But it becomes very hit or miss, and it's very hard to reach these populations. And the likelihood of these individuals navigating the system is slim to none for a lot of folks. And as the legislature mandated that this would look at cultural challenges and obviously the resistance to participating in these programs, it becomes even more challenging for advocates in the program. But I think that New York, here in New York, we have to lead and

100we must do better. And obviously the Medicaid waiver service system is incredible. And I would never seek to reduce that level of care to the more moderately severely developmental, developmentally disabled community. But we have to grow the pie and work together to be able to look how to service that, whether it's through communication, whether it's through additional services, whether it's creating different tiers. To allow folks to be able to access things as well. So I am proposing and again, I'm doing this though. I'm a member of the D, as an individual that's spoken to some members of the D back. It isn't. I'm not wearing that wearing that hat today, but I would love to have a conversation, especially as we discussed the 507 plan. To work. towards some sort of a report that focuses

101on this community. So we can hear from subject matter experts, family members, and of course, self advocates and autistic individuals themselves. So we can construct this system within OPWDD or across the various agencies because it takes a village and it also takes a wide range of state government to be able to accomplish all those goals. So, again, I look forward to our partnership. Greg, thanks for the encouragement, you know, and, you know, as we continue to go and thanks for the opportunity to speak to all of you today. All right, thank you, Robert. As Robert had said, we knew Robert was going to want to comment ahead of time. So we gave him some extra time. But the other member or public, one of their hands up, there's a 3 minute time limit so we

102can get through all the people. So, Josie, whenever you're ready, thank you. Edward Palumbo. Edward, you're unmuted. Hi, how's everybody doing? As a person with autism, for jobs and educate the major corporations, I can't even get a job anywhere in my area, especially Price Chopper Incorporated. which refused to hire me and same thing with and same doing Hannaford. I think people with disabilities and those are high function like me should get jobs really and it doesn't depend on your autism or where you are. I would love to be a part of the Thank you, Edward. Next up, we have Dave. Dave, you're unmuted. Dave, would you like to comment? Dave Thompson? Okay, next we have Yolanda. Yolanda, would you like to comment? You are unmuted. Okay, next up, we have Sarah. Sarah, you're unmuted. Would

103you like to comment? Yes, thank you very much for the opportunity. Can you hear me? Yes, we can. Okay, great. Thanks. I'm the mother of a 15 year old with autism and intellectual disability and vision impairment. I've been on the forums with OPWDD. I wanted to share a couple of my areas of feedback with the board. It's my understanding that time is of the essence for the autism board to respond to the American Rescue Plan request for information. The areas that I emphasized were firstly the direct support professional workforce and that is an area right for a one-time investment to enable more qualified and valued direct support professionals to be trained through collaboration with BOCES programs and other initiatives with Special education networks to get more people coming through the pipeline to support our loved

104ones. I'm glad that you have complex needs represented on this board. I think it needs to still be represented going forward. The other area that I spoke to at the forum was the New York start initiative. I feel it could be built on in order to bring a. Within it, it's still amazing to me that ABA is not part of that crisis response when there are other really good strong things about it. And I know that OPWDD is clearly building up that with resource center, reaching all the regions and caseworkers. Personally, I benefited from this involvement of Psychiatric supports, psychiatrist supports with knowledge of the IDD population, and they are great strengths, but it's inconceivable that you can have crisis supports without ABA. And I urge the autism board to concur with me on that

105and give some feedback because it's a really key component that's missing in New York state. I work with Debbie Napolitano. On the scope of practice bill, I've advocated strongly for that because I believe that behavioral ABA and access to behavior analysis is the key to unlocking so much more for individuals with. Including autism, and I urge you to put that into your recommendations for the plan to. Get creative and bring applied behavior analysis into the crisis system. Um, and. I hope you can join with more innovative practices across the board, not just for emergency 1st responders, but as I believe was mentioned in the report in your report, getting more. Help to. Hospitals in the region to train them to discharge patients effectively into the community with appropriate behavioral supports. So, I urge you to

106continue to represent complex behavioral needs and those who cannot speak for themselves as eloquently as so many advocates have done today in your report. But I am really heartened to see that the report as is and I just went through it on the website as you referred me does include reference to ABA. please continue to represent that as you move forward. And finally, let me just say when you're expanding your outreach as your charge now has to happen, I suggest you go through the care coordination organizations also to promote awareness of this board because they seem to have many member relations groups and are probably a really good route for you to get the advisory board public, made more public. Thank you very much. Thank you, Sarah. Next, we're going to go to Alma. Alma,

107you're unmuted. Hello, how are you? Can you hear me? Yes, we can. Hi, I am Alma Rojas. I am a parent of a 15-year-old autistic girl with intellectual disabilities and other comorbidities. I'm also formally trained in my master's level in applied behavioral analysis, and I did it for my daughter. I'm excited about a couple of things. One, I did not know that this advisory board actually existed. So I'm excited to have come across it. But I have a couple of concerns throughout, you know, the whole process through COVID and what we're going through in this country, particularly on Long Island. I live on Long Island. The lack of representation of Black and brown people in these advisory boards, in these meetings. The Latinx community is extremely popular. It has a very high population on Long

108Island with autistic individuals. And I often do not see this community being reached out to. You spoke about outreach. Outreach does include having to be able to talk to our marginalized, more impoverished communities. And our communities who are marginalized, are impoverished, are not the communities that come to these meetings. These are the communities that are falling through the wayside, who are becoming close to homeless due to COVID, homelessness due to COVID. So I really ask this advisory board to really pay attention on all your goals, to include the black and brown community, the Latinx community that has a language barrier, the training on sensitivity for autism. We know that black and brown autistic non-verbal men have a higher statistic of being killed or hurt by emergency responders. What can we do as an advisory board

109to speak for this community? Because if we do want to look at DEI issues, we really need to look at how we have failed this community by not reaching to them in conducive ways. Kristen said it in commercials, some of us, some of our community members do not even have access to internet. So I really ask this advisory board to really Pay attention to who we're servicing. Lastly, I'm happy. I'm really excited about this 5.07 plan. But it's not targeting targeting impoverished, marginalized communities. The budget itself does not lend itself to communities who cannot afford to even pay for rent. So if they do not have reimbursable monies to put out for these services, they can't use the monies that were allocated. So it's only helping the rich get richer while the poor may continue

110to be marginalized. So I really want this advisory board to look at this part. that the communities that needed the most the most impoverished the most disabled those who don't have a voice continuously have not been reached and how can we really take a charge and really make this a serious endeavor for this upcoming years thank you thank you next we have ruth dan ruth dan you're unmuted hello thank you for this and um okay so I said in the southern meeting, the psychiatric hospitals big time need to be improved because, you know, they don't respect us. Like, even I don't mind saying this in public. I'm very open. You know, even for me, I was manipulated and put on an antipsychotic without even without knowing, you know, and so and I just got my

111bachelor's degree in human services. So, you know, like, they really need to we need to have people with disabilities. need to be taught their rights in regards to that kind of thing. And then the other thing is I know the autism, it's a lot, how do I say this? The community has a lot of different political type aspects to it, let's just say. And I would just be aware that I kind of only learned about this report thing but I read through it a little bit and you know some autistic people can be very offended by the whole lighted up blue thing um because you know um Autism Speaks has some negative some people very negatively identify with it and um and it can and the puzzle piece can be shown very ableist and stuff

112so I would just I would just be um aware of that kind of thing like I know some people okay with it and like the whole ABA thing I I personally, I really try to always see both sides, but, you know, like, it can be some people are really against it and some people are really for it. And but that's I just because we don't want to we don't want to marginalize anyone by, like, talking about office and speaks thing. We don't want we want we don't want to marginalize people and make them really like, oh, I'm not going to be a part of this because, you know, because they see that you guys that LBWB did like a lighted up blue campaign thing. And. I guess that might that that is probably about all

113for now. Thank you. Next we're going to go to Kimberly. Kimberly, you're unmuted. Hi, thank you for giving me a chance to speak. I just wanted to. Bring forward to the board. My name is Kimberly and I'm a coordinator of education, grants and curriculum at the center for discovery, but I'm also the. The lead research associate on the restraint and seclusion landscape analysis, technical assistance, resource center and advocacy initiative. This is initiative that's through. It's through the, with the participation also of the New York state department. O. C. F. S. and the justice center. Currently we're working on creating a technical assistance resource center, which will have resources and trainings information. um on best practices uh so how to and it'll be available for like first responders for teachers for hospital staff for anyone who

114is interested in it we're currently uh we have a survey For anyone who's interested in participating, and it just talks about what kind of trainings your organization needs. What kind of what the best method is, if you're looking for a longer training, if you're looking for a shorter training. And if the board would permit me, I would gladly put together a short email that we could send out to the people who are in attendance today. or I'd be willing to come back and speak in greater length about this project at a later date. Thank you very much. Thank you. Next we have Karen. Karen, you're unmuted. Hi there. Yeah, I have three points I'd like to make. I have a brother who lives in a group home who's autistic. He's in his 50s. And, you

115know, when he was born, there was just about no ABA for him that we could access any kind of behavioral instruction. And he didn't even have access. It wasn't even required that he have access to public education when he was born in his state. So anyway, what I want to say is that ABA is really important for adults as well. For years, we tried to get it for him. And it was only very recently, a couple years ago, that we understood that in order for him to get ABA at one of these clinics, he needed to have a dual diagnosis. Every time, it's not really ABA, but it is at least behavioral therapy. Every time we called, we were asked if he had a dual diagnosis. We said no. And he said, well, then he

116doesn't qualify for services. And finally, we figured out all he needed was for someone to say that he has anxiety, not otherwise specified. And there, that was it. So. I mean, it seems obvious that someone with high end spectrum autism. It's obvious that they could benefit from care, but anyway, so what I want to say is either. That regulation needs to be changed or families need to be better informed. Another thing is that he has a behavioral plan. In his group home, we don't consent to it. We think there is absolutely nothing effective about it. It's a cut and paste job. It makes no sense, but there is no formal way that we can object to it. We are told that only if his behavioral plan involves a restraint are we required to consent to

117it. And because his doesn't, we cannot object to it. So I think that any behavior plan should require consent. And the third point is that I think that You know, when Commissioner Kastner talks about quality performance measures and things like that, I think one of the biggest things that's overlooked is really the experience of the individuals who are living in group homes. And I think we give it very short shrift. They have a lot of stressors. In my brother's home, he's seen his peers with a lot of illness, two have passed away. There's a lot of turnovers. He's had something like five house managers in five years. There's aggression. I think we need to pay more attention to the stressors and somehow have a flag of people who are experiencing many of them. Thank you.

118Thank you next we have Allison. Allison, you're unmuted. Thank you very much. I was not really planned to speak today. I joined last minute, but I also wanted to express that. Hold on, let me just get rid of that. You know, 20, when my son was 13 years old, I've been giving testimony and opportunities like this for years now. And when my son was 13 years old. I started speaking about the lack of behavioral services that are available to those with more complex needs. My son is now 20. He'll be entering into the adult service world next year. And I am petrified for what lies ahead for him. I also have spent a lot of time trying to understand OPWDD solutions for certain things. And, you know, watching what has happened with New York Start,

119I know that that's the service to go to. Has been very upsetting and disappointing to the lack of effectiveness of that program. I'd like to mention that I am also a self directed broker and I support many families and work with many families who are in crisis and have nowhere to turn. It's interesting. We spoke about ABA several years ago. My Senator in my little town in Merrick. We worked with our Senator, Senator Fischel, that will get BCBA's licensure in New York State. But it doesn't seem like the major behavioral component of OPWDD does not even include any BCBAs. So, like, lack of behavioral support and psychiatric, I currently 1 of my ex participants that I used to support had a terrible time during cove it and was taking back and forth to a hospital

120multiple multiple times only to be returned home. There was no psychiatric bed to take this poor boy in and really try to get to the bottom of what his issues are. And I'm sad to say that, you know, even with intervention, you know, he was placed in a group home, except now the group home is now rejecting him. And now he's laying in an emergency room with no place with no place to go. So I think, you know, the lack of behavioral support is is is keen. We have to get the bottom of the supports that the severe population needs. Also, you know. in the self-direction program, you know, I think BCBAs can be, are beneficial to everybody on the team. And, you know, the reason why when Commissioner Kastner says self-direction is booming, well,

121that's because we, families with high needs individuals, we have no place to go. You know, agencies don't take our kids when our kids are too hard. So, you know, I think we really need to, you know, give more flexibility to BCBAs in self-direction. To support the families and in terms of the workforce, I don't know, maybe a tax incentive for DSPs. We want to keep and retain good people, you know, and, you know, OPWDD. Is not able to, I don't know, get the money that they need to in order to attract and keep people the turnover like that poor lady who just spoke with her poor brother. I mean, the turnover in these group homes are horrendous. You know, a person with autism needs consistency and the last, but not least, we need to think

122of cameras in group homes. I mean, you know, my other son works in an animal shelter. And there are more cameras protecting those animals against abuse than there are for our most vulnerable population in group homes. Thank you for your time. Okay, thank you Allison and thank you everybody all the board members and all of the members of the public who tuned in to watch today. I will send out about got a raft of information. I need to get out to board members and I think we've got some work to do throughout the summer. And we will talk soon and everyone else. Thank you very much. My understanding is the next board meeting is currently listed for October 1st, but I believe we're going to that might be bumped out 1 week. But we'll try

123and have a new date scheduled for everybody and get that adjusted on the website as soon as possible. So, thank you very much. Everybody. Thank you. Talk to you soon. Bye bye.