WEBVTT 00:00:04.819 --> 00:00:08.819 Let's start with a general introduction where you tell me a little bit more 00:00:08.819 --> 00:00:12.019 about your organization because I don't know much about it. 00:00:12.119 --> 00:00:16.119 Sure so Next for autism is an organization that's dedicated to improving the lives 00:00:17.219 --> 00:00:21.119 of people with autism. And we do that by developing and launching innovative 00:00:21.219 --> 00:00:25.219 programs. We have been doing that for about 15 years and we started with the 00:00:25.619 --> 00:00:29.219 support of developing a charter school that's currently in New York City. 00:00:30.619 --> 00:00:34.619 Certainly impacted by the COVID-19 charter school that's in Harlem and 00:00:36.019 --> 00:00:38.419 then replicated to the Bronx and over the last 15 years we've developed additional 00:00:40.769 --> 00:00:44.569 programs for recreation and leisure and then community living and employment. 00:00:44.569 --> 00:00:45.619 Again really kind of committed to quality programming for people with autism. 00:00:45.619 --> 00:00:49.619 Right now, we are primarily focused on the needs of teens and adults 00:00:49.619 --> 00:00:53.619 with disabilities and autism. 00:00:53.619 --> 00:00:57.619 How do your members, like all the people with autism cope with these 00:01:02.641 --> 00:01:06.641 uncertainties and how do you help them cope? 00:01:06.641 --> 00:01:10.641 That's such an important issue. I think that we're all trying to 00:01:10.742 --> 00:01:14.742 engage in the best resilience we have the strategies of self regulation, and 00:01:14.742 --> 00:01:18.742 trying to you know, I think those of us that are considered typically developing, 00:01:21.660 --> 00:01:25.660 we're struggling as well. So for people with autism it's helping them use some 00:01:26.960 --> 00:01:30.960 of those compensatory and anxiety reducing strategies that we hope that 00:01:33.488 --> 00:01:37.488 they've learned. Next for Autism has been kind of releasing some content 00:01:38.195 --> 00:01:42.195 digitally on here are some strategies and you know one of the things we 00:01:43.824 --> 00:01:47.824 talk about is we're all working from home. What if you are an employee with autism 00:01:51.659 --> 00:01:55.659 who's currently working from home and that's a huge disruption in routine. 00:01:57.999 --> 00:02:01.999 So, do I know how to ask for the appropriate support from my supervisor. 00:02:02.950 --> 00:02:06.950 Do I know what to do when, meanwhile the supervisor is dealing with their own 00:02:06.950 --> 00:02:10.950 repertoire of challenges. But really how do we develop those resources, that 00:02:11.615 --> 00:02:15.615 content support information to those adults. 00:02:15.975 --> 00:02:19.975 Are there specific strategies, how do you protect them? I don't know if like some 00:02:20.225 --> 00:02:24.225 of them are also in the high risk group? 00:02:24.824 --> 00:02:27.884 What we also think about again is what are the effective supports that would 00:02:28.116 --> 00:02:32.116 allow someone to continue to engage in their daily life to the 00:02:32.847 --> 00:02:36.847 greatest extent possible, effectively. So that is making sure that they 00:02:37.557 --> 00:02:41.557 have their communication supports and they have information and you know a lot of 00:02:44.724 --> 00:02:48.724 people with autism benefit from visual information. Can we write things down for 00:02:51.878 --> 00:02:55.878 them? Can we make sure that there's lists? I'm looking at a list right now. 00:02:57.816 --> 00:03:01.816 That's good for all of us. I think that's also something that people with 00:03:03.269 --> 00:03:07.269 autism really benefit from. So how do we help families that are impacted and the 00:03:08.084 --> 00:03:12.084 professionals that are supporting them. And supporting people with autism 00:03:12.635 --> 00:03:16.635 with this disrupted routine. You know my routine has typically been; I get up, 00:03:17.411 --> 00:03:21.411 I maybe go to a day program for the day, I come home, I see my family on 00:03:22.645 --> 00:03:26.645 the weekends. Which now I no longer am able to see because we're distancing in 00:03:27.640 --> 00:03:31.640 that way. So that is a huge routine disruption. 00:03:34.946 --> 00:03:38.946 How has this whole pandemic impacted your organization? If you tell me a little 00:03:40.110 --> 00:03:44.110 about your usual everyday life and how this has changed? 00:03:45.040 --> 00:03:49.040 Our organization again, we have these partner programs that we work with 00:03:49.725 --> 00:03:53.725 that we've developed relationships with over the years. 00:03:53.725 --> 00:03:57.725 What we're doing right now is try to support those partner programs to 00:03:57.725 --> 00:04:01.725 be delivering the most effective supports possible. Those programs 00:04:01.725 --> 00:04:05.725 were all in person. Some of them have gone virtual and so that's 00:04:05.725 --> 00:04:09.725 something that we're trying to help with support with, were it through technical 00:04:09.725 --> 00:04:13.725 assistance, to financial support, all of those things. 00:04:13.725 --> 00:04:17.725 So the children from the charter school are to have the access to curriculum 00:04:18.167 --> 00:04:22.167 and there are people involved in the recreation activities 00:04:22.395 --> 00:04:26.395 can now do that online. But some of the programs are also community living 00:04:27.914 --> 00:04:31.914 programs so those programs aren't shut down, those are homes. 00:04:31.914 --> 00:04:35.914 You know so how do we support them and that was some of our effort with the 00:04:35.914 --> 00:04:39.914 relief fund was the protective equipment was one of their primary asks. 00:04:40.063 --> 00:04:44.063 We wanted to be able to deliver that. 00:04:44.063 --> 00:04:48.063 Did you get any sort of feedback from your members, like about how support 00:04:48.133 --> 00:04:52.133 them or did you get more questions or emails during that time right now? 00:04:52.701 --> 00:04:56.701 I think there's actually more engagement, because we're all trying to be supportive 00:04:56.701 --> 00:05:00.701 of each other and I think that's the benefit of having and engaged community. 00:05:01.004 --> 00:05:05.004 Well, what about this and does this work? We started a webinar series for employers 00:05:07.858 --> 00:05:11.858 because we knew employers were like well I want to support my employees with 00:05:11.949 --> 00:05:15.949 autism but I'm not sure how. We have 100 slots every week in the webinar and those 00:05:20.419 --> 00:05:24.419 are free information sessions and they are packed, every week that 00:05:24.797 --> 00:05:28.797 session is filled up. So you know I think people are really hungry for information 00:05:29.671 --> 00:05:33.671 because they want to do it right. They want to do the right thing. 00:05:34.735 --> 00:05:38.735 And looking for resources and we're able to offer with the team at Next for Autism 00:05:40.175 --> 00:05:44.175 has a lot of experience, a lot of expertise. So, we're able to offer some 00:05:44.503 --> 00:05:48.503 of that support to people that maybe are engaged in the current work but 00:05:49.047 --> 00:05:53.047 may not have that extensive history. We want to make sure people have 00:05:53.768 --> 00:05:57.768 access to the right information. 00:05:57.968 --> 00:06:01.968 How has your personal routine changed because I guess you're 00:06:01.968 --> 00:06:05.968 at home, obviously right now. So what else did change? 00:06:06.207 --> 00:06:10.207 Yes I am. Yes so here we are talking on a computer. Which I think has become most of 00:06:10.271 --> 00:06:14.271 our, you know all those funny conversations about I'm Zoomed out. 00:06:14.736 --> 00:06:18.736 I think that's just trying to be as present with people as possible and 00:06:22.393 --> 00:06:26.393 engaging in this virtual work. I also want to say that there has been some, I mean 00:06:28.405 --> 00:06:32.405 I think that people are looking for silver lining because that makes us feel better. 00:06:33.999 --> 00:06:37.999 And I have heard from some of my friends with autism, adult friends, how they're 00:06:39.150 --> 00:06:43.150 like, you know this is actually, you know they're of course gravely concerned about 00:06:43.722 --> 00:06:47.722 health and welfare of their families and the community and themselves, but 00:06:48.112 --> 00:06:52.112 they also have said, you know I really always wanted to work from home, but 00:06:52.634 --> 00:06:56.634 my job didn't really afford that and now you know this is actually working 00:06:58.529 --> 00:07:02.529 out quite well for me. I really like this medium, I like having my autonomy, 00:07:03.406 --> 00:07:07.406 or my ability to do that. And I'm like okay, and I think that's true of 00:07:08.176 --> 00:07:12.176 many individuals. Right, there's pieces of this crisis that has allowed us a 00:07:19.330 --> 00:07:23.330 window into other creative opportunities. You know there's with crisis sometimes 00:07:25.486 --> 00:07:29.486 comes creativity and these creative solutions, for some, have become 00:07:30.616 --> 00:07:34.616 a silver lining. 00:07:35.071 --> 00:07:39.071 So I wanted to ask you and I don't know if that's too personal, but 00:07:39.426 --> 00:07:43.426 do you want to share like your motivation why you work 00:07:43.426 --> 00:07:47.426 for this organization? 00:07:47.426 --> 00:07:51.426 Yes, so I have worked in autism services and supports for 30 years. A little more 00:07:51.426 --> 00:07:55.426 than 30 years. Next for Autism is committed to developing quality 00:07:55.426 --> 00:07:59.426 programming and making sure that people with autism have a high 00:07:59.426 --> 00:08:03.426 quality of life. I am someone who's committed to social justice and I 00:08:03.426 --> 00:08:07.426 understand that the people with disabilities in or current society 00:08:07.490 --> 00:08:11.490 are not afforded the same opportunities and we're seeing that you know within 00:08:12.064 --> 00:08:16.064 the current healthcare crisis and I have seen that in my work and I want to work 00:08:16.728 --> 00:08:20.728 with an organization that wants to change that. 00:08:21.599 --> 00:08:25.599 So, if some of your members with autism, if they have some high risk 00:08:25.599 --> 00:08:29.599 factors, are you somehow concerned? Especially because you're in New York 00:08:29.599 --> 00:08:33.599 that you know those triage protocols will affect them negatively. 00:08:34.045 --> 00:08:38.045 Well one of the positive aspects that came out recently was you know we 00:08:39.573 --> 00:08:43.573 know that people have been alone in hospitals and that's a heartbreaking, 00:08:44.254 --> 00:08:48.254 we hear the stories from popular culture media, and it had been the protocol 00:08:49.708 --> 00:08:53.708 that individuals had to be alone due to the transmission factor. And most 00:08:54.537 --> 00:08:58.537 recently, it has been modified so that people with disabilities, 00:08:59.293 --> 00:09:03.293 people who need someone to be there with them as their advocate and they're 00:09:04.011 --> 00:09:08.011 able to assist with communication and decision making is now able to be there. 00:09:09.045 --> 00:09:13.045 I think that's a really important, you know things are changing fast and I 00:09:13.824 --> 00:09:17.824 think that health community saw that was not going to work. 00:09:18.077 --> 00:09:22.077 And that those individuals were not going to receive the best are and we know 00:09:22.822 --> 00:09:26.822 our outcare providers want the best for everyone, and so that was a modification. 00:09:27.618 --> 00:09:31.618 So I think that's an example of how we need to make sure that everybody 00:09:32.925 --> 00:09:36.925 gets what they need and for some people with autism and developmental disabilities 00:09:37.579 --> 00:09:41.579 that means that they need to have a health advocate with them. 00:09:41.661 --> 00:09:45.661 You know we've been in engaging in some communication around that. 00:09:45.745 --> 00:09:49.745 Here's the things you can think about, here's your patient bill of rights. 00:09:49.881 --> 00:09:53.881 Making sure because things are moving so quickly and our health system 00:09:53.881 --> 00:09:57.881 is so burdened. We just want to make sure that everyone's working together.