Featuring: Dana Hooper, LSA’s Executive Director, & Lisa Zuegel – Founder, Constellation Community Living · Champion for Inclusion

Leila Elabed: Hello everyone. Welcome to 2025 I/DD Topics and Trends. This is our third installment of this year’s IDD Topics and Trends. While everyone’s getting situated I just wanted to bring up that we have had four years of this. So, we have many, many resources on our YouTube channel with experts just like the one we have today. If you’re interested in viewing those past webinars, please go to our YouTube channel. We also do transcripts on those if you would like to read about it. Those are on our website, so you can go ahead and head over there if you’re interested in hearing more from experts in the I/DD space. Awesome, it looks like we have some more people joining us. Thank you all for being here. Tonight’s installment is exploring inclusive housing and community, approach, support, choice, and belonging. Lisa Zuegel, a founder of Constellation Community Living and champion for inclusion. 

We’re very excited to start tonight’s webinar, but before we do that, we have a few housekeeping things for those who are new to zoom. You are currently muted for this event, but if you have any questions or comments, please feel free to use the chat function at the bottom of your screen. You can either interact with hosts and panelists, or you can interact with attendees and us. So if you’re looking for community, or if you have any questions, please feel free to use that chat function. We’d love to hear from you. Again, as I said, you can totally switch between them–all panelists or all panelists and attendees at the bottom in your chat function. 

Before we hear from our panelists, we’d like to hear from you guys. So real quick, we have a small poll for you guys. It will be three questions. We just want to know how you heard about us. What is your relationship to someone with an intellectual or developmental disability, and what is your biggest concern when it comes to future housing and care planning for your loved one with I/DD? If you could go ahead and take a minute to answer that poll, that would be amazing.

We love to hear from you guys because it informs our next webinars. We have one more installment of 2025, and then we’ll be back next year. So please answer those questions so we know what you guys want to hear. I’ll give it another 20 seconds, go ahead and answer those questions. 

Thank you guys so much for answering. Last but not least, we have a Q&A function as well for this webinar. The second part of this webinar is going to be a Q&A so if you’re interested in hearing more from Dana or Lisa, if you have specific questions, please feel free to use that function any time throughout the webinar. So ask questions at any moment, and we will get to them at the end. Thank you all for participating in the polls. To start us off today, I’d like to introduce our executive director since 2007, Dana Hooper. Dana Hooper has been the executive director of Life Services Alternatives for the past 17 years, but his journey started many years ago when his son, Brent, was diagnosed with an intellectual disability. Over the years, he has become involved in many areas of the I/DD world. He became a leader in our community, working with government and nonprofits such as branch services which he was on the board of, Lighthouse for the Blind and Visually Impaired–also on the board, the State Department of Developmental Services, and the San Andreas Regional Center, where he was also on the board and also where his son, Brent, is a client in supported living. It also led him to his leadership role at LSA, where he can make a difference every day in the lives of the individuals that LSA serves.

Dana Hooper: Thank you Leila. I’m so glad to be here, and I’m so glad that you all are joining us tonight. It’s my pleasure to welcome Lisa. Lisa is somebody that I’ve known for the past 15 years. She’s part of a group of moms that I affectionately refer to as the Mountain View moms. I met her on my journey, and she will bring some very interesting perspectives tonight. She builds communities rooted in passion, courage, and meaningful connection. She is the founder of Constellation Community Living, a movement inspired by her son and dedicated to creating inclusive spaces where everyone belongs. With a degree in Industrial Engineering and decades of experience leading teams and facilitating global leadership programs, she blends systems thinking with a heartfelt commitment to building a more connective, inclusive future. Lisa and her husband Jim, have lived in the Mountain View-Los Altos area for four decades and have contributed to creating a community. Lisa gets her inspiration from her children, her daughter Devon, who is building a walkable, multi-generational village in Sonoma County, and her son Jeffrey, who is the North Star for creating an inclusive community in Mountain View.

Lisa Zuegel: Dana, it’s so fun to be here with you today and think back to over a decade ago when I got to meet you. You have since been just a wonderful mentor and guide through this journey. So good to be here with you and with everyone on the call. 

Dana Hooper: Thank you. So the format for this section is fireside. I ask the questions, and Lisa gets to answer. We try and make it interactive, and then once we’re wrapped up, we’ll have the more formal Q&A session where we can address your questions. So let’s kick that off, Lisa. Inclusive housing can mean different things to different people. What does it mean to you? How do you define it?

Lisa Zuegel: Well, that’s a great starting point and a real truth, that it does mean something different to each of us. As I think about it, I like to get back to the real basics. What does that word “inclusion” mean? We kind of toss that around, “inclusive housing” and “inclusive living”. What does it mean to really feel included? So, Dana, maybe you and I can think a little bit about that. When have we felt included? We can ask those listening maybe to just take a pause here and think about, when do you really feel included when you’re in that flow of being in a community and a connection? 

I’m going to share a couple of examples of that. First, what it means to me is I think about the home that Jim and I have set up with our son’s care team in Mountain View. We call it the Star House. It’s on Star Way, and it is a place where I feel very much included as a parent and as an expert in terms of Jeffrey’s needs, that my voice can be heard and incorporated, and I can hear other voices, and we can have deep conversation about how to set up the home to be the best it can be, and also have very meaningful personal relationships with everyone who’s in the home. It truly feels like a family where I can completely be myself. My hope and dream is that not just Jeffrey, but everybody in that house can feel like they can be themselves. That’s how it feels to me. 

Jeffrey, who’s just about to turn 26 and has quite a bit of language, although it can be a little hard to understand–I call him my six foot Curious George. When I look at Jeffrey and am with Jeffrey, I try to envision what inclusion feels like to him. I think the best example that I can share right now is that he has one of those third places, and it’s walking distance from his home. It’s the El Camino YMCA, part of the YMCA of Silicon Valley. When he walks into the doors of the YMCA, the people behind the desk are ready for a fist bump or a handshake. They know that that’s Jeffrey, and Jeffrey knows that they know him. When he’s in the pool, whether it’s a good day or a bad day, they love having Jeffrey there and supporting him. He loves his lifeguards, and he talks about them all the time. Those are just a couple examples from me. Dana, anything maybe you want to add on when you feel included, and what are sort of the elements of that?

Dana Hooper: Sure, I think you kind of hit on it. It is a feeling. When you do feel listened to, respected, heard, and included, that’s a very good feeling. I think this is why this is important for adults with disabilities. How about you? Why do you think it’s important?

Lisa Zuegel: As I’ve reflected–Leila was so kind to say, I’m an expert–I have a lot of experience. I’ve experienced it with Jeffrey and Jeffrey’s home, and I’ve gone to many other homes to kind of get that sense of what it feels like. What I’ve realized is we all need inclusion. We’re asking all of you to reflect on that. We all need that, and we all want to set up the lives around us so that we have that sense of belonging. And why it’s so important with people with disabilities–it’s just as important as to you and me–but they often need help or help for us to partner with them, to have that scaffolding, to have the system in place, to be able to build what it takes.

So you asked me to define in my own words what inclusive housing is, and maybe what I can do is open that up to say, what is “inclusive living”? I think it’s being part of a community that’s built on three main elements. Being part of an inclusive living community means that there is a sense of connection. Connection to others in the community, whether it’s team members that you’re working with, whether it’s housemates, whether it’s the lifeguards, whether it’s going to the Safeway where they know Jeffrey–it’s those connections. It’s really about weaving together people, places, and activities to have that sense of connection. That’s really the first pillar in my mind of what inclusive housing is. The second in my mind–it’s another C–and that’s around choice. Especially for individuals with disabilities, we want to make sure that as we plan their living environment with them, or as they plan, that we support them in that we are giving them choice. Choice of who to live with, choice of what activities engage in, how they might schedule, choice of what their home feels like. Summarizing that as them being able to really follow their own star and have that sense of agency that they get to decide. Then the third element is about compassion, and that actually is something that you work on and you try to build that empathy muscle that we each have. But what happens in these environments is that we actually raise the tide of compassion, not just within the home, but within the neighborhood and within the broader community. So that’s kind of how I look at it–those three C’s, connections, choice, compassion, and how it’s critical for every single one of us on the call here today. We have a job to do, which is to be a partner with those with disabilities in helping to establish that type of living ecosystem with them.

Dana Hooper: Yeah, excellent. I think another word I would add to that is acceptance. Acceptance of ourselves and others, but I’m interested in what’s really inspired you to go from building an inclusive community for your son, to advocating for Inclusive Housing for adults with developmental disabilities and going beyond just your own little world.

Lisa Zuegel: Well, I’m going to start with a place that is interesting. As I think about it, I have been working at one company for the past 40 years, and it feels like a family and a community to me there, and I’ve learned a lot. I’m in a leadership development role, and I’ve led a global program where we really build a community of leaders. So I think that that sort of toolkit of, how do you work within an organization, how do you work within a community and build that community, is where I take a lot of the learnings from that. I think each of us who are here today, you can think about things like, what’s in your toolkit of experiences, and what can you bring?

I come with that toolkit, and I come with the toolkit of systems thinking from my education as well, but what has really been the fire that has lit this flame of building inclusion? Dana, it’s really people like you. We met you along the journey, but I want to back up in time, a little bit further to some of the earlier people, before I even met Dana, and show how the breadcrumbs along the way brought this to be and be so clear to me. It’s hard for me to see it a different way now because of the journey that Jeffrey, Jim, Devon, and I have lived together. The starting point was that we were very blessed to be connected with a developmental pediatrician, Dr. Anne Parker, and I don’t think she would mind if I show this picture. I actually have this picture on my desk. Ann Parker is in the Berkeley area as a developmental pediatrician, and you could tell she’s not your ordinary doctor. We left her office and went and played basketball so she could really see how Jeffrey was doing. What Dr. Parker said is that the only thing that we should be keeping as our beacon is to think about how Jeffrey can be a valued part of his community. That’s that C. That’s making the choice. That’s the contribution part that Jeffrey brings value. He has agency, and if we set him up for success, he’s going to be able to bring even more value and grow and be more content himself. 

The second breadcrumb along the way, found us when things kind of felt like they were falling apart, and then this other beacon came into our lives. It was called The Friendship Circle Buddies. Many people within our South Bay community here have been very fortunate to have their children and now adults, matched up with buddies. These are teen volunteers in high school who dedicate their time to really getting to know our kids. In our case, we have lifelong relationships with about 12 volunteers who I actually reached out to–they may even be on this call today. They provided inspiration in two ways. One is, I saw them set up activities with Jeffrey that were so creative looking, and I thought that they had figured out these activities. When I asked them about it, they both said, “Jeffrey taught us how to play that game”. Think about that. Jeffrey did not have that much language back then. The other thing that I learned from them is, I felt like I personally was falling apart as a parent with all of this going on, but they brought community to us. We made dinner for them. We all sat around, and we had a true community. I wanted to replicate that for Jeffrey. My husband, Jim, and I both wanted to replicate that. We loved that, and we wanted that field to continue forever. 

Then, Dana, you came into the picture with the Mountain View, moms and dads, about 10 families that came together. What I think is really important there is that solving this issue of inclusion has to be done in the community. Well, it turns out that of those families, only some of them we are working with here in Mountain View. But we still stay in touch, we still learn from each other, and big shout out to what they are all doing. In fact, a couple of them are living in LSA homes and those adults are just really thriving there. 

Two more people who have been a beacon for me. One is a wonderful teacher, Pam Joy, who started all school. She shared a powerful truth with me: when individuals with disabilities have accommodations made, often, those accommodations help all of us. I’m sure we can all think of examples of that, and I will tell you that one of the biggest ones that’s concrete for me is that our El Camino YMCA has three changing rooms for family changing rooms because Jeffrey inspired Juan Gomez to build them out when they had the remodel, and everybody benefits from them. 

The last inspiration is that my dear friend Mercy Ford and I went to a wonderful workshop from Hope Services with this gentleman, Al Condeluci, who talks about social capital and how real value comes from the social connections that we have. Al gave us all a very practical model, which I think we could all apply. So, how do you want to build inclusion? You find out what a person is interested in–for Jeffrey, swimming. You find a place where he could do that–for Jeffrey, the YMCA, which is a 10 minute walk away. Then, you find out the social expectations for participating there.Then, you get the local gatekeepers prepared and help you bring them in, i.e. the wonderful lifeguards and staff at the pool. So, if we follow those steps, we can help introduce bringing our partner, youth, or adults with disabilities into the community. We can partner to support them so that they can be more successful in the community and go to places that you and I want to go.

Dana Hooper: Excellent. What are some of the challenges and gaps you see in current housing options. There’s a number of different kinds of options available, but are there some common shortcomings that you see?

Lisa Zuegel: Yeah, I think we all are feeling that right now, and, I think I would be remiss if I didn’t bring up the concerns we all have about finances for the future with the current legislation in progress and kind of some of those unknowns. So, sometimes it feels like the Titanic is sinking, and what are we doing on the deck, but on the other hand, I feel it’s really critical, even with limited funds, and how hard it is to make something happen that we figure out within these constraints, how to overcome them. Dana, is it correct to say about 75-80% of individuals with I/DD have a family member providing care back in their regular home? Is that sort of the statistics?

Dana Hooper: Of individuals who are over 21, I think that’s a pretty accurate number and that percentage are still living at home.

Lisa Zuegel: Yeah, so then the question would be, why is that? Again, I’m speaking purely from my experience and going out and speaking with individuals with different family members, going to different sites where there are living arrangements. Yesterday, for example, I was up at Sunflower Hill, and I understand it’s a low-income housing apartment building. It’s wonderful, but there’s 30 people who can live there, right? And they’re going to probably age in place there.

And so, there are definitely a limited number of affordable options in every way, right? And so, of course, one of the challenges, the challenge that I think I can more personally speak to is the challenge of letting go as a parent. This may or may not apply to you–those of you who are listening. You may be, “I’m ready, I just need to find something”, right? That might be part of it, and I think we all get to that at some point, but I also think that most of us go through that place of, can I find an option where, especially my child, who has very significant developmental differences, and Jeffrey does–Jeffrey actually has two-to-one care in his home. He has a significant, significant level of need. And so how can I let go and have him leave my safe space and go live somewhere else. It took a long time for me to be ready for that. I think it was easier for my husband to get to that place, but for me as mom, it was really, really hard to get there. It was a bit of a leap of faith. But Dana, as you know, I think one of the things that really accelerated my thinking is extrapolating based on seeing friends who maybe got ill, and then couldn’t care for their kids, and I did not want to be in that position. Jim and I wanted to ensure Jeffrey was in a place where he could thrive without us. We had to feel that he could do that, but I will tell you, the thing that I did not expect, did not understand, was the upside. 

So, remember, we talked about the connections and the choice and the compassion. Jeffrey being in his own home has created an environment where he has a remarkable team around him who can figure things out better than Jim and I can, and how to support Jeffrey. Jeffrey’s language has improved, his ability to do things with minimal support, some of his daily living has improved. So many things. The most important is that his challenging behaviors, which when he moved into the house, it was unbearable. It was unbearable even the first year and a half in his house was during COVID. But his behaviors have all but disappeared now. I attribute that to the fact that he has a sense of agency. He’s calling his own shots. He doesn’t have mom and dad telling him what to do. So, that’s the main one I can speak to, but of course, the affordability and finding options that don’t necessarily require a big buy-in–we have to make those options available.

Dana Hooper: Yeah, I think there’s some real lessons learned there, Lisa, and we as parents always want to keep our special children safe, and at what point does “safe” hold them back, right? Some of you know me and have heard my story when Brent started living in his own house with a couple of roommates. He’s probably living there for a month, and he comes home on Friday night for pizza, and we have his favorite pizza, and he has pizza, and then he goes home. Like, okay, he’s made the transition. This is not his home anymore, and he wants to go back to his home. So, maybe a little bit of a pivot here to Constellation Living, and maybe you could talk a little bit more about you know what that is, or what you hope it to be.

Lisa Zuegel: Thanks, Dana. So this idea of Constellation Community Living has been perking up ever since the Mountain View moms and dads got together. We actually met at the YMCA and put all of our ideas together, and at that time, that whole group of people were actually living in the Mountain View-Palo Alto-Sunnyvale area. The idea was, what if we could kind of all work together? What if all of our kids, adult kids, lived in a home, whatever that was. It could be an apartment, it could be a house, today, it could be an ADU. But even though, if they weren’t all living next to each other, could we still operate as a community within a community? And that’s the vision is creating, not a community that’s based on brick and mortar, and there’re marvelous, marvelous communities around the whole Bay Area and I visited many of them. Like I said, yesterday, Sunflower Hill, Coastal Haven, Common Roots Farm–it’s remarkable. There’s Cedars of Marin, there’s Clearwater Ranch, there’s many site based solutions that are fabulous and offer a great solution. But I think we all know that living here in well, not all of you live here, but for me, living here in the Mountain View-Los Altos-Palo Alto-Sunnyvale area, I don’t think we’re going to find a place where we can set up 30 people living with each other on the same site. So the concept of Constellation is, can we create that community within a community, and still get the benefits of being a community, just not all being right next to each other? 

So I talked about the connections, the choice, the compassion. We are starting to get together, a design team, Dana, I’ve already started this conversation, and we’re finding some other like minded individuals, and if you’re on this call and you hear this and want to be a part of it, to come together and figure out, what could this community here in the north part of the San Andreas Regional Center catchment, which is one of the pricier areas, right? If we can solve it here, what can we do? Can we create one of these Constellations right here in this area? And you might say, well, what’s happened so far? What’s happened so far is we have two very clear elements of the Constellation together and more. So the two we have together, one is Jeffrey’s house. As I said, it’s on Star Way–it’s called the Star House. It is an example of inclusive living for an individual with very high level I/DD needs who really has a strong sense of community and love for his home, and a big shout out to Dana and Leila in preparation for this session, who came out, the community wasn’t there, I think you got to meet one of the housemates, but you can tell it feels like a family. It feels like a social place. The neighbors know Jeffrey. We also have partnerships with the Y–it’s a very strong partnership. We now have a second Sunday swim for all, pool fun for all, that is in place on the calendar, again, inspired by Jeffrey. In addition, there are, of course, the Magical Bridge Playgrounds that are already in place, and there is another Y in Palo Alto as well. So if we start thinking about these stars in our constellation, and how can we work together and design an opportunity for individuals living in whatever choice of housing makes sense for them, but that they can have the connection, the choice, the compassion, and come together and work as a true community and have that sense of belonging. And we’re going to take the next six months to figure out this design, so if you’re a partner and any way would like to be, please reach out to me–we want to get you on board. 

Dana Hooper: Yeah, so that’s a fascinating concept, and I thought to myself–and we talked a little bit about this when Leila and I came up and visited–so, all of a sudden, if LSA had a home in Mountain View, it’s just another one of the stars in the constellation. Just like today, in all of our homes, for people to really be included in their communities. It goes beyond the walls of the, as you said, brick and mortar. So that would make it potentially much more exciting for the people who live there. The connections to the Y, Magical Bridge, which is really just taking this same concept of it’s better for all. It’s not just about making it accessible for a few more people. It’s about making it inclusive and accessible for all. So that’s fascinating. I guess the question that pops to me is, I’m always thinking about making things a reality, but, what are some steps that people can take, that we can take, to go down that road together?

Lisa Zuegel: For those who would be interested in starting a constellation, and I’ve generally thought about, Star House is right in the heart of Mountain View, if we go north and we go south, easy to get to Palo Alto, easy to get to Sunnyvale, right? We’re looking at, ideally, sort of a 10-minute, either walk or a drive. And once we have all these automated cars driving around, it’s gonna be a lot easier, right? So we can be thinking in the future for that, too. But if we look at that space, if you’re in that area and want to get on board, reach out to Dana and me. You can reach out to me. I know, Dana, you said you’re heading out for a little bit, so please reach out to me. The intention would be to really create a true design for making this viable from a social, from a financial, point of view. So, how many people would need to be in the community? What would be the number of agencies that might get involved? What kind of governance might there be of the community? And what I’m starting to do is–as I said yesterday, I went out to Sunflower Hill, I was recently at Coastal Haven–let’s learn from the establishments that are site-based. They have figured a lot of things out, right? And how do they set up that infrastructure of support, and what if they were doing what they were doing, but just distribute it? What would be different, right? And what would be the same? And so, it’s really looking at that system, that design that we would create together. And for those of you who aren’t in that area, but want to do something similar to this, we would love to partner with you, too, and maybe work on this in parallel. And if you want to start small, the steps that my husband and I and these other families took, I think one was to find like-minded families that you know. Like, right now, it’s a little bit harder for us because when the kids are younger, you’ve got your community, and they’re all hanging out together, and so I would say, start finding people who are like-minded, that live near you, that want to build an inclusive community. Your child could move somewhere else, potentially, but there’s a lot of value in staying where they grew up. And then secondly, look for your obvious partners. If you’re near one of the YMCAs, talk to me, we’ll figure out. I know this is a high priority for a YMCA, there’s 11 of them in the Bay Area, so we can collaborate together with the Y, or you might find another partner in your community. It does take being a little bit of a squeaky wheel and conveying what your adult child needs. Or, there might be someone–I just want to be respectful–someone on the phone here who is that adult child who’s figuring out how to set up something inclusively, so we want to involve you. With Jeffrey, it’s a little bit harder, but would love self-advocates to help us build these partnerships as well.

Dana Hooper: Yeah, I mean, I wonder whether there’s organizations out there that could be recruited or educated. I always think of community centers, isn’t that what they’re for? But then the reality is they seem to run by their own idea of what they’re there for, as a common meeting spot.

Lisa Zuegel: Definitely. A community center could be brought into the fold as well, and it just takes that work, and I think if we go back to the Al Condeluci, idea of the social capital and those four steps that I described we need to look at the community, who’s in this community of adults with I/DD, what are their interests, where is it worthwhile to build a partnership? I mean, the Y is an obvious place, because like our Y just put ping pong tables in, so there’s always something going on, right? And a community center, likewise, there’s so many activities, so we certainly can look. I also just want to do a quick call-out. Hi, Janice. Janice’s daughter is in the studios, I think, and the studios are very close to the Star House. It’s an apartment building that has lots of individuals with I/DD, and I’m excited for it to potentially become part of the Constellation, so lots of nice synergies here.

Dana Hooper: Yeah, fantastic. So, it looks like we’ve got some questions coming, and why don’t we kind of wrap it up and hand the torch back to let it go into the Q&A section. Thank you. Thank you, Lisa.

Leila Elabed: Thank you guys so much for that insightful conversation. It was very interesting, made up of a lot of stories, which really touched my heart, as well as a lot of information. One thing that you said, Lisa, I think really struck me. It seemed like you were saying something like persistence is key when building this housing, and I think persistence is key when advocating for accessibility in general, right? And I really thought that was very meaningful, so it seems like we have a few questions. Also, something that you said, I know Jeffrey gets 2 to 1, right? 2 to 1 staffing? And I thought that was a really cool part of Constellation Community Living. It seems like it’s very open to a lot of different abilities, and you were talking about his behaviors. I know when we go out to events, I know that’s one of those dilemmas for a lot of families who have adult children with behaviors, right? It’s hard to find that inclusive community for them, so yeah that was really amazing. I just wanted to reach out to the audience, please add any questions you have in the Q&A. I see everyone’s very excited about Lisa. I saw all the shoutouts, that was very, very cool. One of the questions, what does meaningful connection look like in an inclusive housing setting? So, like, in the house, how is that intentionally built and not just assumed?

Lisa Zuegel: Yeah, and I can really only speak to the setup that we have, which is how Jeffrey lives, and I think maybe this would be a good place for me to show one of the pictures that I have of him in the house because then you’ll get a better sense. I’m gonna bring up this picture. Okay, here we go. I want to share a very important person in this picture, and that’s my husband, Jim, who’s been just an amazing partner in this. When you talked about the persistence, Leila, the other thing that I think is really important is trying things out. And when the Mountain View moms happened and came together, and Dana became a mentor, for us, it was really Jim who said, we just gotta start doing this. He’s like the doer. We just gotta find a house, we gotta make this happen, we gotta do this. And that’s really true. Like, you’re gonna get pushback. I’ve gotten pushback from some of our partners, and you’re just like, okay, well, I learned from that, where can I go from here? But this is the front yard of Jeffrey’s house, and he’s got his amazing housemates Lisa and Eric, and then the rest of the team here. So you got a little bit of a sense of what it’s like, and where he is. This is kind of fun, this is wonderful couple here just got married, and Jim and I got to go to their wedding, a very, very, very tiny wedding, but they’re kind of like kids to us, too. It’s a wonderful, wonderful community truly full of love.

I guess I want to get back to that question of what does it look like? This is where my little hat of doing a lot of team facilitation and leadership came in as, like, how do we take this set of people with very, very different backgrounds and experiences, how do we bring them together? And so, the house only works if you’re not only helping to bring out the best in your child, but in all the people who are involved in it, where they know that they’re valued and that they’re trusted. And so, it takes time, it’s taken time. We were not here 5 years ago when we started, but we are here now, and I know when I first visited an LSA home, I felt that sense of family. There’s another home that I visited up in Marin, and I saw photos, and I felt that sense of family, and if you come into the Star House, there’s photos everywhere of the team, of team members. Creating that sense of family is what creates the connections. You truly have to care about everyone who’s there, and respect them, and trust them.

Leila Elabed: Amazing. Dana, I wanted to kind of go to you for this question as well. I know, being around the LSA homes it feels like a true sense of community and family, as Lisa said. So, you know, what are the building blocks for that?

Dana Hooper: Well, I mean, it’s certainly something that we’ve always strived for. And I think where we got started was with some core values and one of them is respect. Respect for each other, and with respect comes listening, and paying attention to what people need and want. The other one is including everybody in the conversation and having the biggest possible vision for what family looks like. So that meant, certainly, including that individual’s family and extended friends and the conversation. I guess this one has just always been important to me, which is to be tolerant of making mistakes and to work really hard to learn from them. And to be better, and what that looks like in that kind of a home environment, I think is paying attention. Paying attention to what it takes to make it a great place to live, and how to build that community.

Leila Elabed: Yeah, I see that. I see that every day, and I think it’s a huge part of inclusive housing. I mean, we all want that same thing, right? I want my housemates to respect me as well, as well as all the other cornerstones. I see Lisa’s answering some of the questions. Did you want to answer that one out loud? I think some people wanted a visual on that Constellation Community living. Do you want to go ahead and do that?

Lisa Zuegel: Sure, sure. Maybe while I’m bringing it up, Dana, could you just briefly describe residential care versus supported living? Because I think that’s something that would be helpful. Something that you helped us with 15 years ago.

Dana Hooper: Yeah, well, the simple difference, and Jeffrey’s environment is supported living. My son lives in a home with supported living and it separates the housing from the support.

In that sense, the support is individualized. In Jeffrey’s case, you mentioned that he has two staff. I don’t know if that’s 24 hours a day, 7 days a week, but it’s customized, and you actually have a not-for-profit or maybe it is for-profit, but we’ll say it’s a not-for-profit supported living agency that actually is the structure through which that support is provided. In an LSA home, it’s all combined in that it’s typically a residential home intended for 5 individuals to live. And the support, housing, and transportation and everything is all wrapped together. Those homes are formally licensed and highly regulated, and you have this whole sense of what the home is targeted at in terms of need and what kind of support levels are provided. A staffing ratio in a typical LSA home is two staff to five people. So that’s a long ways from one-to-one, or an even longer wave from one-to-two. Two staff for every one. In some of the homes, it might be three on a PM shift or in homes with higher needs for medical care, it might be three, but it’s always less than the number of people that are living there. Those are the basic differences. 

I think as a parent, I always liked the concept of supported living because it felt like I could customize and really nail what my son needed. And then I came to realize that I really had to work hard to get the social and to get the community inclusion because it would be awful if you were a prisoner of your own home. Even if you had tremendous support, that wasn’t gonna be enough. Then I found with the LSA homes, you get a lot of social interaction–that’s kind of inherently built into having roommates. So, that’s kind of the basic difference in both cases. You want it to be inclusive, and you want it to be right for the individual and their needs and wants, but you get there in different ways.

Lisa Zuegel: Yeah, and I think that’s part of the choice, right? Where can each person thrive  and be their best selves? I’m always curious, like, how would Jeffrey do in a residential care home? I mean, he does great at his day program, it’s a lot of stimulation for him, and when he comes home, I think he likes to be the king of his couch. He doesn’t always like someone else sitting on the couch with him. It’s very funny, it’s kind of part of the joke. But it’s hard to say until you try it, right? We’re back to you gotta try some things out. So let me just quickly share the picture that we have of what a consolation could consist of. This is just an example. So, in this picture, we’re only showing what is the brick and mortar, right? We’re not showing what the care is. We’re showing just what the brick and mortar is. When we originally got the star house going, it was set up like this. We were envisioning that we’re going to have two adults with I/DD living there, we may, in the future. But now, we currently have one adult with I/DD and two adults who are caregivers, housemates. Just a wonderful trio of three housemates,  including Jeffrey. In the future, we would love to see an LSA home somewhere in this constellation. As I mentioned, there are the studio’s apartments that are just down the street. That’s another logical place to look for potential people who want to be part of the constellation. Now, thanks to rules and regulations becoming a little bit looser, the possibility of parents building an ADU, or there will be more ADUs that can be rented, that’s another possible type of brick and mortar. The caregiving is a whole other layer of question, and it’s something that we would need to figure out. But if you  take a look at any of these brick-and-mortar solutions, even if they’re on one site, for example, Coastal Haven has 3 supported living service providers providing service there, right? So it’s not like a one size fits all for everybody. SLS itself requires some flexibility, and Constellation provides that, in terms of the different types of homes, it provides more options for people to be able to be a part of the community with different levels of investment needed. 

Leila Elabed: That’s amazing! That’s awesome. It was nice to see how many different options there are, right? It feels like there could be a fit for everybody, right? Which I’m guessing is the purpose and making it as accessible as possible is always amazing. It looks like Jennifer has a question. What happens in a supported living situation when a parent dies? Who ensures continued excellent care?

Lisa Zuegel: Dana, do you want to take that one?

Dana Hooper: Sure. So, in theory, you set up a situation with a supported living agency, that’s not dependent on you, the parent. I would never want to say this, but hopefully it doesn’t miss a beat. Right? And of course, a parent would be missed and all of that, but the whole idea is to not have the living situation depend on the parent. That way, as the parent ages and eventually passes, it won’t interfere with their life and we all want our offspring to prosper and to be better versions of ourselves. So, hopefully that’s where picking carefully the agency or in the case of a residential home, the nonprofit, it’s important to look at the organization and make sure that it’s going to be around, and it’s well run and all those kinds of things. But then a backup plan, I think, is that it is a regional center. In a worst-case scenario, it might require a new supported living agency, or maybe a change service provider over time, that may or may not be related to the parent passing.

Lisa Zuegel: Maybe I’m just going to add, Jennifer, your question is exactly why my husband and I are thinking about this concept of the Constellation because we as parents need a community. We need all the pieces of the system to be in place as best as we can do. Like, that’s our responsibility as parents. We each have to do the best we can do to get things set up in the most reliable way possible. And if we do that in community, we’re gonna do a better job of it, because we’ll have other people to kind of talk to, and whether it’s family members or really close family friends, if they understand the whole system as well, then they can help to make sure that there isn’t a missed beat. There’s a lot of work to do, right? That’s why I don’t think it’s never too soon to start thinking about these things, and then the bottom line is we all just do the best we can do, right? We can’t control the future, so we just do the best we can and take it one step at a time. But if we do it in community, it’ll be a lot more fun, and I think it’ll be a lot more effective, too.

Leila Elabed: Amazing. Okay. Oh. Did you have something else, Dana?

Dana Hooper: No, I think that was well said. It’s something that we all parents worry about.

Leila Elabed: Yeah. Yeah, I think it was very well said too, Lisa. I know that’s on all parents’ minds, all parents of people with disabilities’ minds, so thank you for tying it up with a little bow. It was great. Thank you all for your questions and joining us for this evening’s I/DD Topics and Trends with Lisa Zuegel. As always, keep in touch, but keep in touch also with Lisa. I’ve seen a lot of people asking for her contact, so here it is. We haven’t been hiding it. I know she dropped it in the chat a couple times, too. As well as her LinkedIn is on the screen and in the chat, so please feel free to reach out to her if you have any further questions on Constellation Community Living or Inclusive Housing, as well as contact us. 

Visit our website. Again, go look for some of our other I/DD Topics and Trends. That’ll be on our YouTube, as well as on our website, or if you have any questions at all, you can email us at the email on the screen, and of course, follow us on social media. We have one more installment of this webinar series, and  we’re skipping a Tuesday, so don’t tune in next Tuesday, tune in the Tuesday afterwards. It’ll be July 29th at 6:30pm, and we’re talking about self-determination. It’s a practical conversation for families, including a parent advocate, as well as a self-advocate. So please tune in for that if you’re interested. Then, of course, come see us in person at Run Home, so this is our 5K, 10K walk, run, cheer, roll, roller skate, bike–come and support. Come cheer us on at the end of the finish line. It starts at 9am on September 6th. Register at the QR code on the screen, or, again, on our website. Thank you all for joining us. Join us, again, not next Tuesday, but the Tuesday after. Thank you, bye.