DDD Partners Town Hall – 6/25/20

Alright, ready to start the recording All right, everybody It’s seven o’clock on a Thursday Pleasant good evening to you off Thanks for joining us again for the New Jersey disability, developmental disability network partners, virtual town halls This is part two of a four part series entitled reopening And re-imagine Harry Ray, sorry, reimagining Striving for the ideal Want to go over a couple of housekeeping things before we dive into the town hall itself My name is Michael Brower I’m an attorney with disability racing Jersey I’ll be the host behind the scenes is Naomi You might hear me addressing her now, and then she’s pushing buttons to make sure everybody gets into the chat room to make sure the audio is working close Captions are working And to make sure that the slides are moving smoothly One thing I want to do a quick plug for disability rights, New Jersey Last year we performed a statewide sheltered workshop survey And we’re looking to expand on that So any information or experiences of folks who work in a sheltered workshop? During the COVID-19 crisis, particularly you have to workshop closed My understanding is all of them did close door in the pandemic We’d ask any workshop participants, families, or staff to share their thoughts and experiences with us The best way to do that is email address Advocate At D R N j.org And that’s up on your screen The Information there is just voluntary If you have anything you’d like to share again, if their thoughts about your experience during the COVID-19 crisis as a worker or a family member of somebody at a shelter workshop Please share that with us I want to introduce the DD partners, the folks that are on our zoom and join us every week Mercedes hotel ski, the executive director of the New Jersey council for developmental disabilities. Share more from her later Not from the bog center on developmental disabilities Calling McLaughlin, you associate director From the office of the ombudsman for individuals with intellectual developmental disabilities and their family, the ombudsmen Paul Aronson, and the associate director, Christine Baxter Join us on the call Gwen or Lawsky the executive director from disability rights is here with us tonight, too And I want to go through a couple of housekeeping Just to make sure that everyone knows what to expect I started talking a little bit before we began the session for questions. The easiest way. If you have a question, a comment, a thought Anything that you want to share or reaction, you can use the chat window that is going to be in the black bar on your screen, either at the top or the bottom If you don’t see that there’s three dots that say more, you click that more. It’ll open up On additional window where you’ll see the chat button, you can push that to open up your chat window There will be a few times during tonight, zoom Where our guests speakers will be sharing their experiences and perspectives that will close the chat down temporarily While they’re talking, that’ll just help us prevent any kind of distractions and make sure that they have Our undivided attention since they took time out of their days to come share with us Also if you are inclined or if you’re all joining us by telephone There’s a couple other ways that you can share questions with us You can either email Or text to questions@drnj.org I’ll have that up on a second screen and be monitoring it live You can send a text message from an SMS enabled phone To questions that DRN j.org, or you can use your email client to send a question there as well With that, that’s our basic housekeeping And when I got that all out of the way, now I want to turn the microphone over to Mercedes Petoskey Because I have director from New Jersey council on developmental disabilities I say this Thank you, Michael And thank you everyone for joining us again this evening And this part two of this two part first two part series on adult services and our next two part series on children’s services So we’re happy to be in your, in your, in your homes to this evening So the first thing, if you go to the next slide, Michael, that I wanted to do, because some of you may not have been able to participate last week was just to give a real quick recap on the

Real DD reopening work group and the reopening conversation that we had last week. Again, this is a conversation So we encourage you to participate through the chat and questions that DRA and j.org in order to hear from you So DDD convened a work group to discuss the Rio opening of congregate day programs and other areas. And their first meeting was June 4th We had our sixth meeting today with meeting scheduled next week At which point we Hope to conclude most of our work around the aspects of what the group was assigned. So if you can go to the next slide, please The recommendations and guidelines for the work group included coming up with information on the now what we’re doing and how we can advise individuals and families as to things that they can be doing while we’re still in this closing phase of our day programs and other services and supports Pre opening ways that the committee will help to inform the division on steps to take regarding how to prepare for opening the third phase soft opening, how to slowly A ramp up opening of day programs and other day services and then ramping up to a full capacity. And then the fifth phase, which we hope we don’t have to ever use Is how to adjust based on data in, in perhaps having things slowly closed down or based on geography W with data, how we might need to make adjustments through the service system So those are the, that’s the charge of the reopening committee Next slide, Michael I did show last week, the 10 individuals that are on the work group, there are five service providers and you see them up on your slide Right now, those five represent the three trade organizations in our state, the arc of New Jersey ABCD And N J a C P and then two providers that are not residential service providers, but just wrote run day, stay services And may or may not be associated with a trade organization Next slide The five other members of the reopen work group or advocates, including the bog center and myself as part of The council on developmental disabilities, as well as Eileen Hurley Who’s the chair of the family support planning council and the family advisory council. Carolyn Heyer, who were very delighted is one of our panelists this evening And Renee Pierce, who is a self-advocate who received services from an impact of agency Next slide So we heard about reopening concerns last week We shared concerns that we had already heard And they’re up here on your slide I’m going to transportation continues to be a big concern, given that most folks rely on some form of transportation to get to, and from their day services Having to wear masks who can wear masks, who can’t wear masks And other areas like testing remote and in home services where some of the concerns reopening concerns that we’ve heard next slide And then we also heard from many families regarding RI recommendations protocols, how to prioritize the services and supports that people will get and when they will get them as reopening occurs So next slide I wanted to also take a minute before I w we move into reopening We did have a DVD, how to division, update meeting today and gave a status as to where the Reopening work group was at And I wanted to share some of that in case you missed that today So what John reported is that the group has reviewed many Resources and information through the centers for disease control and prevention Much guidance from other New Jersey state agencies that have already worked on re they’re reopening an issue They reopening plans within the department of health department of children and families, and also guidance from other States As we as, and had opportunities to look at they’re reopening strategies to help inform the work here in New Jersey So it’s sometimes it’s great to have work that’s happened before you’re ready to move forward The other things that the state shared today was some of the priority areas of the work group and was not an exhaustive list, but I’ll,

I will share with you The work group is working on guidance for an individual assessment and assessment that families would complete with their loved one And that would help inform the provider that they use in terms of Various aspects of what needs to be considered around the individual’s needs and their thoughts and plans for returning to a day program And what services they might receive now and how those services might be continued in some way The other thing, the work group group will look at his guidance that will provide recommendations Four items that need to be addressed in order to reopen safely And guidance on what the facilities will need to do to prepare for opening and what we’ll call, what was being called a site assessment that providers would need to follow in order to You know, verify that their services are ready for The next step So that is the status. As I said, we’re hoping that the group will have concluded much of those documents that will then be reviewed at the state level And John did say today that then they would be issued out for implementation So that’s about as much as we can. We can update tonight There is again, no date for reopening programs, but I think we are well on our way as a work group to having a completed Much of the work, laid the foundation for all of the work And I would say confidently that we are very close and hope that the state would be able to start to share that information with everyone soon So the second part of this town hall is around re-imagining and I put a couple of questions Up here because I looked at the chat from last week and, and we appreciate that you all contributed to that, that conversation So one of those questions was, you know, how can I really reimagine in a time like this already under a lot of pressure or already dealing with many things. So how can I reimagine Is this really the time to reimagine who can help me re-imagine and I know that we have great folks on our call tonight So if you wanted to think about re-imagining, this is the right call to be on And then what are those possibilities for? Re-imagining And then we go all the way down to, I just want things to go back to normal I’m really not interested in re-imagining and that’s okay, too So, but we’re glad that you’re still here and you can listen to this dialogue and conversation and we can begin to have a, another great discussion So next slide So the first person who is going to start that discussion for us is Carolyn Haier. Carolyn’s a family advocate She’s going to give her perspective and I’ll let her share And then we’re going to close the chat right now so that we can listen to Carolyn. And then we’d like you to pick up Sharing reactions to Carolyn’s presentation Carolyn Well, thank you, Mercedes And I am very pleased to be here this evening, and I was just looking at the participants and I see a lot of familiar names and a friendly faces And so just reminds me that we are all in this together Which we constantly hear every day, as we all try to navigate through these unprecedented times that we’re in So tonight I was asked to share with you a little bit about my perspective as we all navigate through these unchartered waters that we are in And to really think about, you know, what was life like pre COVID? What is life like now? And what we might imagine life will be like post COVID And so I want to start by saying, as I look at that picture, that was me pre COVID This is me now So you see what COVID has done But as I started to think about, you know, how would I frame this conversation? It reminded me of many years ago when my son, Chris, who is now 32 He has autism and when he was younger and in school, My driving thought all through school was Do whatever we can do to prepare him to not be home with nothing to do when school ends And, you know, we worked very hard to reach that, try to reach that goal. And I feel that COVID Just made that, that was my greatest fear that when he would be home with nothing to do and overnight That’s exactly what happened For us and a lot of other families that we went from having

Our loved ones in programs and having the supports and services that they needed to lead, but that they have lives too, going to nothing And so that’s hard, but I, I, it, and it’s taken me a while to kind of wrap my head around that, but I am also the eternal optimist And so I like to think that this is an opportunity for us to reimagine You know, it took us 20, some odd years to imagine and get to what we have before. Now We’re kind of back to square one And thinking about what does life look like in this new world? And I do believe that we will be able to bring some of what we had in existence, but I also think that A lot of the structure that are mine Really thrives on it Many of our kids really thrive on is very uncertain right now And I think that’s very hard for them as well as for us As their family members who want to support them in the best way that we can So I know we’re going to hear later about some, some tools to help us with this process of re-imagining But I think before we can use those tools, we really have to be at a place where we think that it’s a positive thing to do to reimagine. And so It’s difficult to reimagine. And so we, we really need to try That’s kind of where I’m at now. Not thinking about budgets, not thinking about All of the restrictions that are currently Hampering us right now But to kind of look beyond that And think about in this new world, what would I really, really want for my loved one? And I think the primary driving force for all of us right now His health And safety, and that has to be the driving force And because of that, there are going to be things that we’re not going to be able to do that we might like to do And, and I think we have to recognize that, but not just stop there also Think about what to do beyond this point So once we have mastered that, what might our lives look like? How might we function differently? And I, I, I think that One way to do that is to dream and dream big Right. Let’s really try to think outside of the box. And, and I heard some folks say to me, what does that really mean? And I think it needs something different for everybody Oftentimes, I think we, we want to know what are the services and let me go down that list and kind of check off the things that might work for me And I think we should take this opportunity to kind of recreate that list And maybe add things to the list that were never there before It reminds me of many years ago when we were pushing for inclusive practices and Early on There was a lot of resistance to that because it was new and had never been done before So I think we’re kind of in that same place right now We’re going to have to do things that we’ve never done before And we’re going to have to do things differently than we’ve done before And I That’s hard that it’s hard to go down and unknown path But that’s what I’ve been trying to do That’s what I’ve been trying to wrap my head around. I’ve tried to Kind of block it out Into different categories What are we doing differently at home? Let’s certainly our home life has changed You know, used to be up everybody out the door, off the work, whatever it is that you had to do And now we’ve had to readjust to what that looks like You know, two steps forward One step back as we tried to get around that process, but this has gone on so long I think most of us to some degree have gotten to a point that we’re in some sort of a routine at home now And then I think we have to start to think about what does our life out in the community locally and how is that going to be different? Then how it looked before, and, and there are a lot of concerns with that You know, masking and social distancing, and we’re so reliant on what other people do, probably more than we ever have been And that’s concerning as well in terms of keeping our loved ones safe But I do think we should try to Identify those things that we can do out in the community where we can

maintain our safety and then look for support the support that we need to do those things And then the third piece is what do our day services or day programs look like? So as Mercedes shared, the committee has been working very hard and it’s this, you know, it’s such a challenge because everyone’s needs are so different and so varied, and to kind of come up with something that’s going to work for everyone is Is is very, very difficult And, and I think we have to acknowledge that we’re going to do the best we can, and we’re probably going to have to tweak it along the way And that’s okay And I think that that’s what we’re going to have to do at home in the community and in our service programs as well And so I’m trying to take this opportunity to think about not what exists, but what would I want to exist? And then identify what are the supports, the tools, the structures, the services that we would need to put in place To make those dreams become a reality And so I would invite everyone on this call too, to try to do the same Try to push that fear that I know that is rising up aside It will be difficult And then we also have to think about once we’ve identified what it is that we want, what do we have to do to provide our kids with the Skillsets that they will need to actually be able to take advantage of those things And so there may be some new skills that have to be developed, some training that needs to take place, some instruction that needs to take place, but I really, really I think at this point, Everything’s on the table. So we have to really think about, this is what I want. This is what I need to get there This is what my child needs to get their young adult adult And then really go to work in terms of identifying where can we access those services? So, I don’t know if there were questions, but that’s kind of my thought process right now. And I’ll tell you, it changes every day. I get up the next morning, I think, Oh, maybe not that and something else, but I would hope others are coming along on that journey Well, you know, Carolyn, it’s great for you to be at that honest with us, you don’t have all the answers. I don’t think any of us do it We’re here tonight. If we could turn on the chat, Naomi Then I, and then I’ll just ask you Carolyn You know, it’s great to be working with you on the reopening committee, because you said it, you know, health and safety is really the driving force And there were some families that are willing to take some level of risk in order to reengage their child in, in the services that they had pre COVID. There were some that we’re, we’re hearing Don’t want to have any level of risk and will the state offer enough flexibility to continue some of the current things that they’re doing that or are remote? Is that a, is that an area that you’ve given, given some consideration to, you know, accessing remote services with Chris so that he has the things that he enjoys doing, but maybe that they program stays You know, stays as a, an element maybe toward the future, but is that something you’ve looked at or thought about? Yes. So And that’s why that’s a great question, because I think it speaks to this whole, re-imagining had someone said to me prior to this, Oh, we’re going to give you all these remote services are probably, would not have thought that would be something we should take advantage of But are they program is quest and we actually have a daily zoom And when we got the notification that this was going to start I’m honestly, my thought was all right, I’ll pop them in front of the computer, but I really I expectations, which I should know better by now And Day one, his face lit up just from seeing The they’re his friends that he hadn’t seen in a long time, which I never would’ve been able to predict And we are allowed to the point that we have our daily zoom, he walks, he can lock himself in He is relatively independent with most of the activities. And so Yes, we would definitely look towards continuing some level of remote instruction in that he still needs a lot of support when out in the community. And so this is something that he’s engaged, he’s learning, he’s active. And so that has been working for us to some level

So for us, that’s a yes Awesome. Thank you So Carolyn, we’re going to get the chat is going to be up and I know you’re not going anywhere, so we might come back to you, but I’ll, I’ll use a phrase that I’ve heard almost every day Now here’s a woman that needs no introduction because we had our own, our panel last week So give me what is the support coordinators to go to the next slide? Thank you She has graciously included her email address here because she wants to make sure that you have a way to contact her And Amy’s got some words around re-imagining She’s going to share with us now Hi. Good evening everyone. Thank you again for having me back I really, really do appreciate it Carolyn said it really best when she said we need to think outside the box. And when we talk about re-imagining, the reality is, is that while D programs are really great service and provide lots of wonderful places for people to get connected to each other To do some volunteering to learn some great skills The reality is, is that they might really not be available Not only might they not be available for you, but it might not be, as Carolyn was saying a good idea because of your health and safety needs to be in any type of a group So there’s some people where that’s might not be an option anymore So now we’re at the point where we asked the question, well, now what do I do? Right because here’s something that was an important part of somebody’s life that now it’s not a good idea or not Too much of a safety and health risk for you to then take advantage of that service again So I want you to pretend like there is no box There’s no box. There’s no limits. Let’s pretend there’s no limits That’s pretend there’s no budget Let’s literally answer these two questions What does a great day look like for you or your loved one? And once you think that like, There’s no restrictions This is great Pretend like there’s nothing else going on If you could choose anything to do in the world And that would give you joy It would give you a sense of purpose. It would give you what it, what it is that you’re looking for in life Figure what that is Let’s have some deeper conversations as to what’s important to somebody And then we’d go on and say, so how do we make that happen? What needs to be put in place to make that happen? So as we think about re-imagining, I want you to really just kind of not think about services Don’t want you to think about what you can purchase with your budget I want you to think about what it is that you want to do, or you think your loved one would really like to do With that in mind There’s a high likelihood that some remote learning would be okay There I’ve give some providers So a huge amount of credit I’ve been encountering I guide it figured out how to do their music lessons I found another one that had added self defense classes over zoom I found another one that does accounting was Zane has like these friendship groups So they get to keep talking about stuff Another one did like Derby day, they all did the hats They all had like a little thing about the horses and they kind of watched it and figured it out together So they found these really great ways To just do things Kai’s remotely as possible. Now I, I hear you already Virtual learning doesn’t work for my loved one or for me My kids are the best example of it Virtual learning for school was an absolute disaster. It was not good So that’s not a vehicle that would work for them But maybe having a person with you throughout your day will All right. We figured out if we wear masks, we do stuff outside We do things quite carefully and we are very good about our cleaning and all of that stuff. Then maybe some staff Is a good idea Having a person come to you that can make and help design that day help you make that day possible So I know I said, don’t think about services. Sorry I’m gonna do it anyway So let’s talk about support brokerage This is a highly underutilized service It’s something you can purchase. If you’ve got sports program Or you’ve got CCP on the eye records Do you need to be in the new system? However, it is an actual human being That who can help you to find staff? They can help you to get them enrolled in one of our fiscal intermediaries, they can help watch over the time sheets and make sure that they’re correct and send them in when they need to be sent in They can help design a schedule They can help them think about what places or what things they could be doing together And provide some support for you in getting that done It’s something you can use your budget for There are companies right now that are available to do support brokerage. It’s another person to help handle that stuff Cause I know one of the hardest things to do is to find that right,

human being To, to connect with you, right. To connect with you, connect with your loved one that matches well within your family I support broker is a person that you can add into your supports and services that can help you to do that. That’s their main job They can even go as so far as help you interview or help you to design the job tasks and the job duty that you might want for them, things along those lines So that’s just a really, really great resource that’s out there right now So if you were in that great space that Carolyn and he was saying, you know what I think we really need to figure something else out If we’re here or I think it’s worth Thinking about and pursuing that line of thought I think it’s worth the thoughts in the conversation Then support brokerage might be a service that could really help you to get to where, where that is. The answer, that question How do we make that happen? That might be something that could help Another one. And Mike, if you had such a slide, please Is is, is finding set. So big one is finding that So I I’m very pleased as I am part of another group called the collaborative for citizen directed supports This is a group of agencies that’s gotten together We have providers of staff. We have some community partners We have some support coordination agencies Who get together. And our goal is self direction. That’s all it is It is our main drive and focus that people have The voices are loud and proud in our herd So that they can make the choices in their life That makes sense for them And everything we do pushes towards that What you up on your screen is a fact sheet, which I know Mercedes is going to be able to, to share, or if not, that’s why I’ve got my email address there This is an interactive map that helps you to find staff So if you’ll see, there’s a couple of different colors on that little map on the bottom right hand, baby left for me. It’s the right hand part of my screen And see a couple of different colors and there’s a couple of different symbols So most of them are these little hands with holding little heart, and those are qualified providers. Those are staffing agencies Who, if you click on the different colors, those are different agencies. So the different color is, is for the different companies They will say, Hey, I have a female staff and in this zip code who is available these hours, So we all know one of the hardest thing is like, yeah, this person’s great, but they’re not available They’re not available when I need them to be You know, things like that So the whole idea about business that you can open up to your location You can find one of the little hearts and hands, we are about to add another symbol on for self-directed employee So that’s a person that you would hire, right? That’s a human being that you would hire, but can you create that relationship? And you use one of our, either Easter seals or public partnerships To hire that one person So, if it makes sense for you to hire somebody from a company, because that’s what works for your family, you have a little heart in the hands If it makes sense for you to hire a person, because that’s what works for your view and your loved one in your family And we’re going to have that option too If you’ll notice there’s also a little plus sign The little plus sign is a place for families who can’t as a place for families to advertise and say, Hey I’m looking for And a staff who can do these hours I want them to be female and I want them to be able to drive my loved one in their car So there, you can put some specific information on that This is free For self directed employees and for families So for you all on the call, it’s free If you are a qualified provider, we are asking for $50 a month A fee to have you advertised as many open positions as you can possibly have And, and, and use it. So this is a great way It’s only a little bit of the map. It is actually statewide So it’s only a small tidbit of a map that you can see there, but you’d be able to click on it and open up for your exact area and see how far away people are Nice. So it’s just a resource that’s out there That’s available that I want to make sure we offer to everybody And I hope that helps Thanks Amy. So I will ask Dara and Jay, when they send out the information with this recording to also include this fact sheet. Cause it is Difficult to read on the mat on the, the screen here But we will definitely get that out to folks. It is a new tool So the more people use it, the more robust it will become And thank you for sharing I’m going to take, I saw something on the chat about Children had more slanted toward children’s services

And about those folks transitioning from school to adult early, hope that in our July, the next two parts series We’ll be able to focus on those children’s issues. And I will say, cause I’ll say this, even if Carolyn wasn’t on the call span has some really good resources on their website. So I’m Carolyn, do you just want to unmute and just say that a website name? I Give that website I’ll type it in the chat because A little, but it’s www that’s an advocacy.org Okay. You want to Say anything else about the, specifically about the kids transitioning Carolyn? I appreciate Celia Cecelia raising that issue. It’s Very challenging. We had hoped that There would be some stronger guidance around the, the graduates for this year But I think that families need to make sure that they were informed by their school district, that this is a change of placement For them so that they could have had those conversations about the potential for compensatory services, because this was just an unprecedented thing And for so many of the graduates who would have during the spring, been getting a lot of their internships and those types of transition programming, they might They might still want to have some conversations either with their district or contact the department of education about what their options are Thank you Carolyn. And thank you, Amy, for making yourself so available to folks even beyond tonight’s call to help them. I know how High spirited you are and, and committed you are So we appreciate that So I think Colleen is going to come in now and take us through the next half hour of our presentation tonight and discussion Please continue in the chat when you can Hey everyone. I’m sorry. My camera’s a little dark in my It’s getting darker as the sun goes down So, yeah. Amy, thanks. You Mercedes. So Amy and Carolyn, you know, really both said it The whole idea of re-imagining means thinking outside the box And I know that sometimes can sound cliche, but it’s really, really true We need to, we want to use where we are today, really, as an opportunity to think beyond the barriers of what we know exists and really give back to the roots of person centeredness and being able to create supports based on what people want to do and what their preferences are for their life So throughout this crisis, you know, we heard today in many of us have heard throughout the past, you know, two, three months, a wide variety of concerns related to the what ifs and what will happen after, you know, we get, try to get back to normal Many people have expressed concerns about going, like you said, going back to large congregate support, cognitive supports and are really looking At ways that they can reimagine the way supports can be provided in either more individualized, smaller group or self-directed ways throughout our communities In addition to that, you know, over this past few months, we’ve had a lot of togetherness We’ve been together with our families a lot more than we typically are. And we’ve had a lot of opportunities to really new things, learn new things about our loved ones in their interests and their preferences, and sort of just Just getting to know each other a little better, which has been really a great opportunity. And, you know, as we get to know each other again and more and deeper, we’ve had a way to really think more about what people want out of their services and supports And started to look at new possibilities and opportunities Some people learn new things that people enjoy just by virtue of some of the technological supports that have been put into place Other people have learned things that they thought the person liked, but really learn. Now that they’re home, they didn’t like that so much So this is a fabulous opportunity to use this time of uncertainty and think about new ways that together, people with their supporters I can access a wide array of resources that are available throughout our communities. And even beyond that, So I think it’s important to mention that we all know that the current structure of the current, the DDD system has been changing and evolving over the past couple of years, as fee for service has been lifted up People now have greater flexibility with how their supports and services are scheduled and organized And people don’t have an all or nothing option You don’t have to choose the all or nothing option You don’t have to just choose The route where you either go to a day program, five days a week, or else your options are extremely Liberty limited. Now, what we’re seeing is a real growth in the providers providing day habilitation services that will tap into community resources

We’re also seeing a growth in other services Some of the ones that Amy actually showed on the map, other services, such as community inclusion services, supportive employment, community based services, self-directed options And then technologic tech technology based supports that can really be interwoven and blended together in ways that align with the person’s needs and preferences And what you see on the screen now is really an example of those blended models. And, you know, the first one is that blended model of when a person isn’t quite ready to leave their name program entirely, but they maybe want a little something different out of it So you see, in this case that there’s a person that happens to be going to their day program two days a week, but they may be getting supported employment one or two days They may volunteer one or two days They may tap into community resources like the rec center or Jim Or have a self directed employee to go take them to do dancing around to dinner with friends and things like that The other, the other calendar here shows an example where the person is, has tapped more into self-directed options and community inclusion options, and S Employment options where they’re volunteering, working, and taking even more part in the variety of community based activities and the way that today’s budgets and services can be structured Really allow for this And now that people who have been at home and maybe reinvisioning the way they want their lives to be coming out of COVID This is a great opportunity to have conversations with supports coordinators The only figure it out. Like what, what do I want, what do I need? And the supports coordinators can help you to identify the variety of services that are available in your area You’d really be surprised about how there’s way more than you even think there is. There’s more and more stuff coming every day Sure Amy can attest to that And so we’re grateful to have with us today I’m a mom and a son and, and Joe Martin Nally, who are gonna share their examples of the way that Joe’s weeks looked before. COVID And the way they look now, and then also how they’re envisioning his week is going to look after, after, after COVID so Ann and we can flip to the next slide Let’s turn over to Anna Joe Marinelli. So welcome Maybe you did Think of muda Dan Okay Am I good Yeah. And now we can hear it. Yeah. Okay. Okay We can’t see ourselves though, but that’s okay Very much like Carolyn I’m an optimist I’m always talking about how the glass is half full, rather than half empty And we were Joe and I worked very hard to create a life for him When he left the education entitlements In 2005 So for 15 years he’s been self-directing his supports and services And there’s one thing that my husband always said to me, because at one point we had seven self-directed employees We’ve always had self-directed employees for 15 years So at one point we had seven And my husband would always said to me, well, what are you going to do is they will quit tomorrow. As you can tell, he’s a glass, half empty guy And what I always said to him was I did it once. You know, I created this with Joe and if it falls apart tomorrow, We can put it back together again Well, that will happen in March It fell apart in March when COVID 19, you know, all the restrictions started coming in. So We had to do it And had to do it differently, but I I’d like to, if you could put up the slide of what Joe’s day looked like before COVID There we go I also wanted to say that Joe has given me permission to revise for him If he does have difficulty talking, but you know, he is able to answer questions from anyone who has any questions Some point, but he, but he has given me permission to revise for him So you can see his schedule Was pretty busy He’s been someone who has always wanted to be out of the house, doing things, you know, not staying home out the door as soon as he could. So He’s been volunteering at an assisted living facility with one of his self directed employees since 2007 Yep You didn’t see him today, too. Correct?

And he played games, you know, for Keno and bingo and current events, you did all sorts of things with residents And he really made some good connections with some residents Some he got so close to that He was able to go up into their rooms and visit with them at times as they got more real. I mean, he’s, he’s witnessed deaths, who’s been in touch with families He’s gotten very close to people over all these years, doing this and, and really, you know, Connected with the employees too It goes out to lunch with the employees that work there Very very big part of Joe’s life and on, but the nights you would have a dance class he’s been doing that for six years Now you’re doing it on zoom, but now we were talking about before that, before you did it, it was, it was actually at the building He did dance class participated in a huge recital. Every June Tuesdays Did the movies cause he tests physical therapy at home Did the movies went out to dinner with friends, Wednesdays, volunteering at the habitat for humanity restore in freehold, Thursdays physical therapy. Again It was Aaron’s hair cuts going to the mall or dinner with friends again on Thursday nights, Friday, she worked on Friday mornings for a few hours, had occupational therapy and Saturday back at the habitat for humanity restore So he was very much out of the house every day Doing things, you know, with his self-directed employees and having a very busy life So, like I said, March happened, everything stopped, came to a complete stop for him. All of this. While this ended, this life ended one day And you could go to the next slide So we had to Figure out what to do next. His Sunday stayed pretty much the same, you know, it was family day, but now we’re social distancing with his sisters And their families We couldn’t see them until we could get outside and social distance They weren’t coming into the house So I know you hate it. I know you hate it We all hate it We all need it Good. Good. Good I think everybody on this call’s been social distancing Well, when Colleen, he’s asking you, if you’ve been You’re muted. I’m also talking to myself Absolutely Joe A gift Do you don’t you hate it I do hate it. I’m tired of my house So, you know, we are very fortunate that we can social distance outside on our deck with our family. Now, you know, it is still difficult, but we are able, we are able to see them. So We needed to figure out what Joe was going to do during the rest of the week. So right now he had three, actually four self-directed employees Two of them. We had to ask not to come to the house. You know, one of, one of them also had a part time job while why would she continues to do so? We couldn’t have him come here to the house any longer. And Another young lady is a police officer She’s been with Joe for 14 years Again, she had, you know, she’s out and being exposed So we had to ask her not to come, but the other young man who has been with Joe for seven years, Is full time And he is, you know, doing the he’s just goes from his house to our house So he has been coming to our house every day, Monday through Saturday So we had to reimagine what they were going to do Good So, yes, Joe has been FaceTiming with the other self-directed employees that he’s not able to see anymore. He does He is able to FaceTime with them But the OT and the PT that Joe was receiving, you know, in the, in the home, I didn’t want those therapists coming in the home anymore So we are now doing it through FaceTime He’s getting PT and OT each twice a week He’s doing a FaceTime with the same therapist And Robin Paula, right? And I will say that it is through Medicare You know, I don’t know if Medicaid or if private health insurance does that, but Joe Joe is under Medicare through my husband So he is receiving those services Through Remotely And his self-directed employee is able to do that with him here, appear in the home His dance class, the one that he went to religiously every Monday night, since March has been on zoom So he’s been able to still participate in the same dance class with the same instructor and the same Other young adults in the class with him I do I am doing

Yes. And it’s continuing through the summer. Good point, Joe Thanks for reminding me about that. Typically had run so Timber through June and then had a big dance finale In June, but now it’s going to run through the summer because everyone is enjoying it virtually Good They got permission to do it through Yeah, but this is an out of pocket This is not something that he uses his budget for. This is, this is out of pocket So you can see up on the screen, you can see that he’s, he’s continues to do his PT and OT, but he’s still zooming the people that he Went out to dinner with, he can now FaceTime with He took a goods and service class with the same agency that he’s doing, the dance class from its family resources associates in Monmouth County He didn’t did a goods and services class with them on Wednesdays Now, like Carolyn had said, you know, she didn’t think her son would be interested in doing anything remotely. I never really, a million years would imagine that Joe would be interested in, he never really wanted to engage with anything on the computer, but this You know, all the zoom, the dance class, the FaceTime with the therapists, and this goes in service class that he took Loved it, you know, jumped right into it. It was, it was, it was a wonderful opportunity for us For Joe and us to learn that this is something that it would be interested in. So this is something you’re engaging in everyday, use things, zoom and FaceTime And I had taken classes he’s also able to do He’s also able to zoom With the people that he volunteered with habitat for humanity at the, at the restore and freehold, he has done calls with them and he gets to see the same faces, you know? The people that he missed a scene, he does a dancer size class rally cap sports on Saturday mornings It’s the same instructor that he has in the dance class on, on, on Monday evening. So we had to reinvent everything that Joe did outside of the home Inside of the home He has gradually started now to go out to a park He’s going to a park a few times a week with his self-directed employee. In fact, you did it today, do it yesterday, too He’s now able to take advantage of the pool. We have a pool at home, something he never liked to do. He never liked to go in the pool He would sit down there with us while the rest of us were in the pool When he really wasn’t interested in the pool Now he’s going in the pool with his Self-directed employee. I I’m really enjoying it. So I know, Colleen, you had mentioned about, you know, thinking outside the box and something that I’ve always said You know, I’ve always imagined Joe’s life in, in helping him plan I’ve always imagined it as if there is no box we’ve, we’ve never, we’ve never thought, you know, well, We’re going to go on this silo. We’re going to go in that silo What we’re gonna do this, we’re going to do that We just always figured, you know, what does he like to do? He’s a people person He always wanted to be with people So the volunteering at the assisted living, the volunteering at the habitat for humanity restore, you know, where he gets to see the same people But he’s right smack in the middle of his community, you know, engaging with people And, you know, it Go ahead As I say, do you think, you know, as your thing As you and Joe were thinking about when things reopen and Joseph to do more maybe of the old activities or even some new activities You know, what are some things you are envisioning? Because even regardless of whether or not somebody’s self-directing or they’re getting supports from DSPs that work in a group home, or perhaps DSPs that work in a community inclusion service, or a day habilitation service These are all things that could be communicated up to the supports providers is that, Hey, this is what we want to be able to do Now that we’re reopening city of like ideas you wanna share Well, I know some of the things that, you know, the, the volunteering that he’s doing good He’s been asked He’s already been asked, you know, that, that the store, the restore was there Envisioning it reopening in July and, and kind of come back to do that And we had a very fine Talk about that. And Joe told us he’s not comfortable going back yet He wants, he wants to wait a while Good. Yeah Peggy is the volunteer coordinator. She told, she asked Joe,

if he would be willing to come back and mid July and you could see shake. And he said, no, not yet. He’s still, he’s still worried about it. So, but you know, some of the things that I can see Joe doing, and we’ve talked about, this is continuing the remote classes He’s looking forward to taking, he’s taking two more remote classes this summer through FRA And it’s going to be one of the same teachers, the same teacher that he just had for this, for this, this spring semester You could say his name Alan, he paints, he enjoyed Allen’s class So I can see, you know, we’re going to continue with the remote, the remote stuff for awhile, but you know, certainly getting back out You know, getting outside, you know, Joe’s been going to this, the recreation area in the next town over and doing workouts there, you know? He and Manny, we’ll go over there and Manny we’ll bring music and they’re listening to music and Joel will bring his one pound weights. You know, when they’re in the shade, sun blocked up You know, they’re in the shade Doing workouts, but they’re outside. So, yeah. Yeah And there’s a lot of things So I think that it’s one of the things and you know, we’re running short on time, so I want to make sure. Thank you Thank you. That’s all awesome. And I think it gives a lot, you know, all three of those presentations gave people a lot of food for thought For the different ways things can be done now. And in the future And Michael, if you wouldn’t mind flipping to two slides from now, I think we’ll get into. So, so one of the things we wanted people to be able to have that are participating in this town hall today was a tool that they could use to sort of get their ideas out on paper so that they could use this to have a conversation with their sup Service providers with their support’s coordinators to help really imagine the way that they want life to look as things are reopening And also as things open re-imagining the future And this tool is what’s known as the integrated support star in some of his, some, some of you are very familiar with this and I put the link in the chat. So hopefully you guys can see it It says integrated support star And it’s also at the bottom here, but what this helps you do is it helps you identify the relationship based support These can be paid or unpaid supports that people can use to help them do a variety of things in their communities And then the eligibility side helps us, you know, this is a great opportunity for people to have conversations and jot down. How do you want your eligibility based services to look Did you have you taken a look at, in the DD council with DDD recently made a family friendly and person friendly guide to the community care program In addition to the one they had on the support program, but have you taken a look at all the services that are available and have you listed the ones that you may want to tap into? And have you investigated the ways that self-directed options may be able to be used? I know that, you know, and does a lot and Joe do a lot working together to really map out the way his self directed services work But then Amy also mentioned, now we have the opportunity to purchase supports brokerage services that can do a lot of that work with you and help you So you don’t have to do it all on your own So that’s something to look at in terms of eligibility based supports There’s a lot more options out there And then the community based supports, you know, whether it’s you as a person or a family tapping into the community based supports, or whether it’s a service provider saying, you know, what is that a saying? You know, in the day program, we’re going to go help people volunteer, or we’re going to go help people to participate in the rec center or the Y you know, those things are all things that you may want to communicate with your service providers and your support coordinators to say, Hey, we know this exists in our community We’d like to be able to tap into it a little more. How can we do that? That And then now we’re learning a lot more about technologic technology based supports And while we all know that it’s not perfect for everybody and it may not be right for everybody, a lot of people are realizing, you know, like, like Anna Jo said, Oh, we can really use some of this technology to help support ourselves a little better. So, you know, making a list of those things and And we really just wanted to show you a tool to help you have these conversations and help people jot down their ideas Because I don’t know if you’re anything like me, you have all these ideas in your head And then when it comes down to talking about them, they go out the window So having this stuff written down can really help guide some of those conversations So the next time you have a phone call or a zoom with your support coordinator Break this out and talk about what people are envisioning, talk about what you want for your life and the support coordinators

can help you to really get that. So, anyway, I mean, Mercedes, did they want a questions? It’s eight o’clock now, and I know we’re sort of Done. So Well, there were a lot of questions in the chat about children’s services I’m just going to really encourage people to tune into the two July sessions on, you know, reopening and re-imagining children’s services. We will focus on You know, school as, as part of this children’s services, town, halls, and big, Michael’s got that slide up there now for the upcoming sessions July 9th at 7:00 PM. And then again, July 16th at seven. So, and you can register through the link there Thanks Mercedes And I’m noting the time that it is one minute after eight, where you like to run these things exactly. Two minutes over time Sorry about The expansion, but I think there’s been a ton of great information going back and forth here again in the chats been very active I’m going to just take a second to thank everybody again All of our DD partner participants All of the attendees from the public My colleagues from disability rights, New Jersey, and especially our guests, Carolyn Joe, Amy, and Anne taking some time out of their days, all very busy They have a lot going on to share their perspectives with all of us Oh, we hope to see all of you on next on July 9th In between have a happy independence day, stay safe and stay healthy And we’re going to sign off. Thank you all. And take care