Hadiyah: 

All right well thank you so much for all those of you who joined us early and we still have some who are coming in. I want to thank you so much for your patience, I know that we have attendees that are still on their way and before we get started I just want to say my name is Hadiyah Fain and I’m going to be your host for this particular panel. You might hear from some other people on my team later this week but this is Life Services Alternative’s 2025 I/DD Community Panel Series. In this particular series we’re going to be talking about Empowering Siblings as Advocates and also how they’re involved in housing planning for individuals with I/DD. We have a great group of panelists that are going to be talking tonight and I’m excited to invite them, but before I do that thank you so much for joining us. This session’s really about lifting up sibling voices, exploring how siblings of individuals with intellectual or developmental disabilities can play active roles in care, and advocacy and housing planning and so we’re again honored to have an incredible panel of speakers joining us today – each who brings unique and personal family perspectives to this important topic. Before we dive in there’s just a few housekeeping notes that I want to make mentioned. This webinar today will run for exactly one hour and it is being recorded. If you’re an attendee, meaning you’re not on our panel we can’t hear or see you, but we will be able to take questions and answers at the end of this presentation and we’re going to do it a little different this year. We’re going to have our panelists speak for a matter of time. We’ve given them a loted amount of minutes and then afterwards we’re going to come back up with questions and answers from you. So if you have questions that you want to ask and you’re in our audience feel free to put them in the chat directly so our hosts or our panelists, myself and our panelists feel free to ask them in the Q&A or feel free to ask them anonymously in the Q&A if you just want to know and you don’t necessarily want to be acknowledged directly. We will have some followup after this if you want to talk with or extend the conversation with any of our panelists and ourselves afterwards, but before that we want to ask you a couple of questions. So first we want to get a better sense of who’s in the room and who’s joining us so if you’re in this poll right now and if you’re in this room right now would you please take a moment to just help us by answering a few poll questions. We just want to know how you hear about us, so just give a second we’re going to pop the poll up for you to answer. There’s about three questions – how’d you hear about us what’s your relationship to someone with ID and then also what’s your biggest concern when it comes to to future housing and care planning for your loved one with I/DD and so far we have a few people who are still answering so I’m going to give it a few more seconds, but thank you so much for taking the time to read these questions and fill them out for us. All right I’m going to give it just a few more seconds here. Great, thank you so much for taking the time to answer these questions I’ll give it just a couple more seconds to let you guys finish and then I think we’re going to go ahead and move forward. Perfect, all right so I am really excited today to introduce our panelists. We have Merrick Wolf who is a sibling and an advocate, Christine Wang who’s also a sibling of an I/DD a resident from an LSA home, and then we have Lisa Zuegel, a parent whose daughter is deeply involved in her siblings long-term care planning. She’s here representing her daughter who’s deeply involved in her siblings long-term care planning and so we’re excited to have her at the very end of this. As was last year, we’ve partnered with SV at Home and we’re going to have a special guest joining us her name is Reva and she’s going to take a couple minutes at this session and also to share with us some important resources for if you’re looking for housing for yourself or your loved one and you want to learn more. All right, so that being said – thank you so much for joining us let’s begin by hearing from Merrick Wolf who will share his experience as a sibling of someone with I/DD and his personal journey and the advocacy and support. Merrick the floor is yours.

Merrick:

That’s a terrible picture. Hello, thank you for letting me be a part of this. Two quick things about my own housekeeping. First of all I’m sorry I didn’t have the consistent background here that wasn’t working with video so it’s my own place. Also, I’m going to have to actually leave right after I finish the talk here so thank you. I guess I’ll just start saying that my sister’s Hillary and she is 54 years old and we’re from New York and we all moved out here to California and Hillary and my folks lived in in San Diego and were finding that there wasn’t enough services there and and they found Hatikvah initially was called Hatikvah House in Campbell and she was there… It’s been over 20 years and a few years ago the person who was in charge retired and we were so fortunate LSA stepped in to manage it and it’s been an absolutely wonderful partnership. My sister has Williams syndrome – you may have to look that up and she has been actually doing pretty well all these years. She’s had the same job at Safeway now for pretty much the whole time she’s been there and is really flourishing and we, well my mom and dad took care of her especially my mom unfortunately got dementia my dad was taking care of her for the most part –  he passed away in November so my brother and I have had to step up, even we’ve all been very close anyway but my my dad was you know, failing health so we we’ve stepped in more and we take her to as much as we can – to concerts and shows and out to dinner and all kinds of things so she has another life outside of Hatikvah Home and we’re really just happy with how things are going. 

Hadiyah:

I’m sorry that you have to leave immediately, but Merrick I’m glad that you were able to join us I think there’s something to be said about and it sounds like your brother actually has something he wants to say but before he does it sounds like you’ve had quite a bit of transition just recently in your family. Can you talk to us just a tiny bit before I let your your brother Bruce who’s also pictured here, before I let him ask a question, can you talk to him just a little bit about Hillary’s… you know not without going into I guess too many personal details but just the planning for Hillary, before your late father passed and your mother was unable to care for you know obviously herself or even your sister. What went into that? What was the thinking even between you and your brother? I know personally if it was my family we probably would have been fighting and pulling each other’s hair out and so you’re very fortunate to have that type of dynamic.

Merrick: 

My brother and I have a great relationship and we kind of just easily fit into our own roles. My brother handles a lot more of the family finances and legal business and all that kind of thing and and he’s also on the board which is so wonderful of LSA and and then I’m more the day-to-day, so taking her to doctor’s appointments and things like that but keeping her socially active when we can to eat out and to shows and things like that but with our our dad we did this a few years ago already to plan to go over the paperwork and everything that’s needed for after, when he’s gone. That’s gone pretty smoothly now so, I know Bruce wants to add anything into that. 

Hadiyah:

Yes, I was going to say sounds like there’s a lot of paperwork are you okay with us allowing Bruce to just come on. Is that all right? I’ve promoted him to panelists and Bruce you have the floor whenever you’re ready. Whenever you’re ready our team’s actually gonna spotlight you Bruce and you can just unmute and talk. You don’t have to type in your questions. 

Bruce:

Okay great, I don’t necessarily have any questions but sorry to add what was saying you know the kind of the planning we did i mean as he said we took the time to sit down with our father a lot and tried to much information as possible before his memory decline started kicking in which we all we kind of had noticed. I mean there’s still a lot of things I’m trying to uncover but you know as far as Hillary is concerned, the transition into Hatikvah House before LSA was very important. One was our family was everybody lives pretty independently and our folks had kind of the principles of everybody should have their own independent freedom and felt Hillary should be able to do that too. She has a lot of functionality and has the ability to do that and obviously she really does and before and now with LSA she’s thriving and still growing, just you know being healthy and all that so the transition wasn’t that hard. When it comes to Hillary and as Merrick was saying, each of us are quite actually very natural and Merrick I should say you know really covers a lot of the health and medical side of things. I mean there’s just so much to track, so it’s us being able – we’re very fortunate that we’re able to do this together and that we get along so well. 

Hadiyah:

That’s really awesome. I again, I know you have to step off Merrick but Bruce as unorthodox as this is and I know we didn’t practice this in our rehearsal but Merrick would it be okay if Bruce answered a couple questions from the audience if they had it for you. Okay we keep you on Bruce as a panelist question asker and I just want to thank both of you Merrick. Thank you for your time. Thank you for your willingness to hear. I’m sure this question is going to come up later but we’re going to move on to our next panelist but I’m sure there’s someone in the audience that would love to have been a fly on the wall with that conversation. That last conversation you had with your late father who’s done so very much for LSA and who’s been a pillar in the community from what I’ve heard. Just to ask you know okay, what do I need to know – if there was a way to bullet point that– I’m sure that would be worth a thousand uh New York Time bestsellers and so stick around for that if you’re listening. I am going to ask that question at the end of this panel, but I want to make sure that I have enough time for all of our panelists. Thank you so much Bruce and Merrick and Merrick if we don’t see you good afternoon, good evening, good night thank you so much for sticking around – Bruce of course. All right our next panelist is Christine Wang who will reflect her role as a sibling and advocate for her brother Deedee a resident in an LSA home. Christine please go ahead.

Christine:

Hi thank you Hadiyah. Should I just go ahead and start? 

Hadiyah:

Let’s go ahead and start absolutely. We can hear you.

Christine:

Okay so this is my younger brother – he’s about four years younger. I’m four years older than him and we when he was born you know my parents immigrated from Texas, not Texas from Taiwan to Texas in the mid 60s and so it was we’re the first family there weren’t that many you know Asian families in the area and when my brother was born I also had not– I didn’t even know what it was, I just knew that he was a little slow and whenever I would ask my parents – okay what’s you know what’s happening with with Dee? Dee is his actually his nickname it means ‘little brother’ in Mandarin so it’s so we call him Dee and um it was interesting because he I didn’t actually really know what it was whenever I asked my parents what was you know, how to help him what was happening, how, why is he different they would just – my dad would just tell me “Oh he’s just a little slow, he just needs you know some help and some support from you.” But no one really talked about what it was – that he had and I actually didn’t know he actually had Down syndrome until much later in my life and was able to talk to my parents about it and had a little bit more understanding around it because I had gone and searched and gone out to the library and and you would think within a family we would be able to talk about it but it was – I don’t know, if it was maybe cultural… it might have been cultural where it was the one thing in the room where no one really had words for or really could talk about and I mean it could also be that you know there was the cultural barrier there might have been a language barrier but not really cuz my parents are pretty fluent in English soI just feel like that there was – yeah there was a lot of mystery around it and then as I got older, I had more understanding around it and I think was much more able to kind of help myself in terms of understanding the role that I played because I think in our you know in our family it was just me and my my brother as the two kids and so usually it was all – it was my both my parents and myself who were usually helping or assisting him at home and yeah so I think that was it. Was an interesting experience. I felt like it was – I think because I did not have really extended family around, it was also not something I could talk about outside the family and I do think that there was some cultural stigma there as well – about it and I think growing up as a teenager, I think it was very isolating cuz I actually didn’t really know. I didn’t really know anyone who had a sibling or even knew anyone who had any sort of disability and so it was – yeah it was an interesting process for me growing up. It was… I think it was the isolation I think that made it probably the journey a little bit more challenging and even growing up my parents didn’t really have words for it. I ended up – it impacted me because I ended up being a special ed teacher as a result and went into special ed and learned a lot about developmental disabilities. And so I do think it definitely directly impacted me in that way. As you know, after college I think I was much more equipped to be able to support him and to support my family and to support my parents and understanding how to help him because I think that was something that was a question for me throughout my childhood.

Hadiyah:

Thank you so much for sharing that Christine. I do know we’re at time and I appreciate you just being so… not just transparent but also open now to talk about your experience and again we’re out of time to ask questions now but I just want you thinking about this because I am going to ask, at the end of this panel – you, Bruce and Merrick are very like you know – that is our roles we just get it done. Dee was your sibling, your other person right and that dynamic was different… it would be nice to hear from you being kind of the soul sibling but you are right that is able to in a neurotypical way kind of offer your family… How do you think that differentiates from having someone to confer with about what to do when dad goes or what to do when mom is no longer able – in terms of housing so just please put a pin in that we will come back to you thank you so much for sharing. I’m excited to hear more. These are awesome photos by the way. I feel like I am looking down your past as we speak. We’re  going to move forward to our next panelist and we’ll come back. This is also a good moment if you are in the audience and you have a question for our panelists. You do not have to wait until the Q&A portion go ahead, open up the bottom of your Zoom application — type in the chat or pick the Q&A function and feature and go ahead and put your question in the Q&A spotlight. We’ll be really excited to read them for our panelists. Our panelists are open to hearing from you and this next one again is really exciting because Lisa Zuegel brings a perspective that we haven’t talked about yet which is the perspective of a parent supporting both of her children — one with I/DD and the other one who stepped in as a sibling advocate in a sibling advocate role. Lisa, we’re so glad to have you with us. 

Lisa:

Thank you and it’s really an honor to be able to share the panel with Merrick and Bruce and Christine and hear their stories you know from the sibling perspective and also from I think a slightly different time. Devon and Jeffrey were born you know around 2000 and so the experience that I’m having with them now perhaps is a little bit easier than it was in the time you know when Dee and Hillary were younger so I’m very happy to be able to share the story that we have it’s just one story and it’s really as Hadiyah said it’s really a story more of my children but through my eyes and whenever I think about them and what they really mean to me I look at this photo — I actually have it as my screen saver and it was taken 10 years ago and it really fills me you know with that love with that joy and I think most importantly that sense of agency. As a parent, something I’ve had to stretch and grow to learn is how to create the space for my children you know to let go of them so that they can grow and learn and have that sense of agency of who they can be so you know for those who are on this call and you have siblings who are are healthy and able to be involved I think that’s wonderful and I also think that you know it might be a cousin or might be a close family member who might play a similar role that our daughter has played in our son’s life and developed a type of relationship I think that is really going to make a big difference and is making a big difference in his life so we’ll go back to the start of the story  and as I said Devon was born actually just at the turn I guess it’s the turn of the century right, 1994 and her brother was born in Halloween around Halloween of 1999 and for both of my kids I do believe that the moment that they were born they were born with that sense of self with that sense of agency and it was something that you know I could and should nurture and make real and that will be a theme that runs through this story here and I want to share that and illustrate it with the two pictures — so on the left if you look really carefully you might see a brown bandage across Devon’s chin and that’s because the night before Jeffree was born literally the night before he was born she had her school walk-athon and it was about 90° out and then later that night she went and she raced a little boy up a gym structure and fell down and proceeded to have to go to urgent care and get 10 stitches so that was my Mighty girl and the next morning her little brother was born and then fast forward just a few weeks and it was Halloween and Devon decided to be Lily and for those of you who are familiar with Lily — I’m going to actually hold up one of the Lily books here… let’s see if it shows up — this is one of our favorite books and we read it when she was little. Julius the baby of the world and Devon decided to be the little vibrant confident mouse Lily and of course her Julius was Jeffrey who became the baby of the world so those were their costumes and if you get a hold of that book you’ll see why that sense of agency and who you are just comes through so loudly so pick up the book —it’s smileworthy no matter what age you are. So a little bit about where Jeffrey started — he was diagnosed with low tone cerebral palsy when he was about 4 months old so we didn’t know when he was in uterero but pretty soon after we were very fortunate that his pediatrician spotted the differences and that intervention would be appropriate so we were super lucky he got into an infant program at what was then called CAR and is now part of Ability Path and um the picture on the left is from one of our sessions at CAR and as you can see Devon I think had just as much fun as Jeffrey did there — he is with one of Jeffrey’s teachers Monnique and if you look at the picture on the right you might see some resemblance — this is a picture taken fairly recently in Jeffrey’s front yard in Mountain View that was Devon visiting and Mo’Nique who is now Jeffrey’s home OT and them greeting each other after all of these years I guess more than 20 years so this really highlights a second theme of our story which is I think we have found that you know when you find treasured advisors, teachers you know in your child’s life and no matter how old they are, you know we really found that if we can keep them in his life in some way or another it can make all the difference so agency and the relationships are really key. Next thing that kind of happened with Devon is when she went to high school and of course they’re about 5 years apart so Jeffrey wasn’t there with her — Devon was part of a program at Mountain View High where it was called Freestyle and they were supposed to write a book — was sort of their big project you know for the year so she chose to write a book about Jeffrey and she interviewed all of Jeffrey’s team members she wrote about like what an IEP is and she got to really have great conversations. The quote that’s in the bottom right — I love love love this quote it was by Robert — he’s featured in the book and he was Jeffrey’s first behaviorist and Robert said that Jeffrey has a kind of sense of humor, a sense of interacting with the world that I think makes a lot of sense to him he has a lot of integrity that way and I love that quote because it really again marries those ideas of having sense of who you are you know what you think is funny and sharing that with other people and having people like Robert around who really get Jeffrey. So Devon helping to bring that to life really made a huge difference and we still treasure that book today in the teen years and I’m now I’m talking about Jeffrey’s teen years there were two big milestone things that happened and one of them is that our family made a big decision instead of conserving Jeffrey we decided that we wanted to opt with something that would give Jeffrey or allow him to keep his freedoms and allow us just to support him and his decision-making and so we created a plain language power of attorney we actually worked with an attorney, we worked with a speech therapist and as you can see Devon, my husband Jim and I we are Jeffrey’s agents — we support him in his decisions and the power of attorney works like it’s really great — literally the doctor’s offices, they all have it it’s just like being conserved in many ways so it truly works and I think even more importantly than the fact that it works from a mechanical perspective is the fact that going through this process and it took a while it took about a year and a half to go through it but thinking about and deciding to do it it really has created this foundation or this lens that we think about all of the decisions that Jeffrey is making even decisions like him keeping his ready little beard on his chin when mom wanted to shave it off so  that POA viewpoint on life I think is very important. So also during Jeffrey’s  teen years, we started collaborating with a group of families and Dana — I see you’re on the line here — this is when Dana Hooper came into our lives. The Executive Director of LSA and ever since we met him, he has been not only a trusted adviser, but a friend and helping us really jumpstart this whole process of envisioning what the future could look like. Back then Dana actually called us the Mountain View Moms we were a group of families who were learning together envisioning together and here we are at the YMCA in Mountain View — there is a familiar face in the right corner that is Fran. Fran is a dear friend of LSA and is a prior board member and on the left you can see some of the families and including a picture of Devon’s profile there as she left college to join us for a weekend and talk about this planning for the future. So Hadiyah asked me to share just a tiny bit about our vision and in looking at what that looks like, this vision that we started with those families and has since grown into what we call constellation community living. I’m sharing it because I think it’s very pertinent to this sibling conversation and how siblings can see themselves as connected to a bigger hole. So our vision is and we’re you know really kind of at ground zero — maybe step one in that is to have an in intentional community of 5 to 12 adults each living with autonomy in their homes with the necessary supports, within walking or driving distance and in a natural environment of the local community. And what our goal is,  is to create this community in which our son and others can love— can love I guess that’s true love and live love life just like you and me so that’s what we’re trying to create together and we already have the making of this vision is real like I said that first step. We were already there in 2020 yes during the co years Jeffrey moved into his own home in Mountain View and he has two housemates and he’s thriving there as you can see from this photo with his caregiving team so I think this photo says it all and Jeffrey truly is the star of his constellation — so what do I mean about the fact that this is more of a social community not a brickandmortar one well. What we’re doing is thinking about how can we create a community where it is flexible and inclusive and the way that we’re thinking about that is that members of the community can live in a variety of homes with various types of ownership and that they don’t all have to live in the same house. They don’t all have to live in a house — they can live in an apartment and that the glue of what really keeps them together it’s that social connection that social capital that keeps them together and importantly too is that we’ve picked a location in Mountain View with exceptional resources, shopping centers, parks, the YMCA, high schools for volunteers and near downtown Mountain View — including having a free shuttle so all of these things are enabling us to create a real community within a community and then how does Devon fit into that? How do we create this constellation that’s truly a social community? So on this next slide you’ll see that the model is really built upon layers of support from local community partnerships like the one we have with the YMCA where we have inclusive swim events and where siblings have one another so it’s not just one family or one house but truly this network of families, siblings, friends who are supporting the community and to make this practical by having 5 to 12 individuals we can have economies of scale. How do we know when the community is really working? Well here’s a picture taken on a warm evening back in April  where Jeffrey’s team got together and here what I see is that the house the home this community brings out the best, not just in Jeffrey but in everyone — and that’s what’s most important so this team inspires me, but so does my daughter. So we’re going to go to the the next slide — Devon I guess somewhat coincidentally, but perhaps influenced by the experience of living with Jeffrey and growing up with Jeffrey she is building a community in Northern California in Cloverdale and as part of that she is also partnering with Clearwater Ranch which is a development that’s already in existence outside of Cloverdale or actually inside of Cloverdale and they’re going to be having a inclusive picnic on June 7th so if you’d like to join us I can get you the details so showing that my daughter is engaged in this and in her own way not necessarily directly connected to us but that this has informed the decisions and the work that she does. So proudest moment as a parent — well Devon got married to Sebastian  about two years ago and as you can see here the pictures say it all — Jefferey was an integral part of Devon’s wedding day. Then finally where do we go from here? Yesterday, it was my dad’s 97th birthday and my sisters and I came from across California and met them — my parents in Monterey and what I can see from my own experience with my siblings is it doesn’t really matter where we are — you know we keep the connections, we keep the love and you know this siblinghood that we have or that Devon and Jeffrey have I think this is what’s going to make all the difference to make our vision of the future really work — thank you.

Hadiyah:

That is awesome. Thank you so much Lisa for sharing that and all the pictures I feel like I feel like I’ve been there and I’ve experienced the things now though I clearly was not— it is honestly remarkable this constellation that you talk about and how it’s really all… it’s been working together and in support of the community that you’re building— that being said we do have opportunity for questions from the audience and while people are getting back together I have one of our staff members and one of my teammates we’ve put in the link — an interest form for Lisa Zuegel because as she’s mentioned she’s building something and although we all are building community all the time, especially on this panel, Lisa in particular is inviting you from the community. If you’re looking for a space that might be good for your loved one or you yourself are looking for a space and you fit within the I/DD community description or neurodiverse description and as she mentioned can have the that agency or if you’re receiving support and help from your loved ones and you want to check out their plan and what Lisa’s been putting together — in the chat you’ll find that there is an interest form. We’ve been intentional not to show a QR code for any of that because eventually we are going to have a specific talk just for Lisa and we’re hoping she’s going to come and join us for our summer series which is our normal I/DD Topics and Trends. We’ll just focus on how this has been coming together. Thank you so much Lisa for the opportunity to just come on and share. We’re going to open up the floor now for comments and questions from the audience. Again, feel free to use the chat Q&A — if you’d like to remain anonymous, which you’re more than welcome to do that and then also to give an opportunity now for us to ask some of those previous questions with our other panelists and so I’m going to go ahead and lead that off today and I’ll have both Bruce and Christine and Lisa come and share with us now. My goal especially in this next session is to get some of the piercing questions that you’re asking or that you want to know now out of the way but then also they’re going to be people who are going to come along after this who are going to listen to and they’re going to hear this recording um and I want them to hear again from these personal experiences that maybe they can learn from and maybe not — maybe there won’t be too much that they can compare to their story, but bottom line is whoever you are wherever you are, wherever you are — you’re not alone in your experience and we’re going to talk about some of the things that may be relative to your experience today. Bruce, you talked earlier just about the experience between your brother and your father — all kind of sitting down and talking about what needs to happen next and I know Lisa explained kind of in detail the process for her son and also in the unique scenario where Lisa’s son isn’t conserved — can you help us understand if we were a fly on the wall— kind of some very basics that your father shared with you about Hillary and the things that you essentially needed to know in order to carry on those next steps as as her sibling — can you give us maybe one or two points that he shared with you that you needed to know what was the first things that came out of his mouth.

Bruce:

Well the first thing was — she was conserved by my father and actually what’s interesting is that  the court had not reviewed her conservatorship in 9 years which is very unusual and so when he brought it to me and I started reading it — I’m a social worker and so I have some idea about these things. Some of those privileges don’t exist anymore — the state has basically repealed them so we started talking about you know, that and just about Hillary having been so independent. She had been living in that house for like 25 so she is very… has a very solid routine it doesn’t change all that much. She lives a fairly stressless life and so the question then became why does she need the conservatorship and that’s why I was nodding so much when Lisa was saying that — she opted to do a POA instead because that’s exactly what we’re going to do. Hillary can make a lot of decisions on her own, but you know finances — she’s not very good with finances, but she knows how to use an ATM card — that kind of thing and for those of us who don’t know — POA is power of attorney so why are you suggesting that I know you’re saying she has autonomy but its because a conservatorship is very confining. All decisions comes from the conservator, but with a POA you’re acting as an agent — that person maintains their independence, but certain things have oversight so healthcare — there’s a healthcare POA and then there’s a durable POA which is more financial and assets and whatnot and so we also learned this very intensely because both our parents were in their 90s and our mother has dementia and our father was slowly getting older too and so we had to get power of attorney for both of them and we invoked this — tried to invoke it early on because we have family trust and it was very very old — even though it was done, in the state laws have changed so you got to get these things looked at and updated on a regular basis and started everything else just started flowing after that so um you know — there are a lot of things that we didn’t know about that — we had to pay attention to one of the things was also since Hillary has been working she’s like Safeway’s. One of Safeway’s oldest, most senior employee you know — she became ineligible for SSI because she’s working. She makes too much money supplemental security income and so um now what ended up happening was sometimes some months she would go over limit and it was like well what do you do about that because then they cut off the SSI from her because she’s gone over the limit so learning about the Cal ABLE account you know there’s this ABLE program across the country…

Hadiyah:

You’re dipping into our next talk actually. This is a good moment for me to say, if you’re interested in learning more about financial support and stability for your I/DD loved one or for yourself please join us again on Wednesday where we’re going to be going over financial foundations and sustaining house and care for a lifetime— that’s Wednesday May 21st, 3 through 4:00pm. Bruce you said something and I want to make sure that we give and I don’t mean to cut you off, please forgive me, I want to make sure that we have enough space because some two things that I heard you and Lisa say that were really important and I think there is a strong movement for right now — is autonomy and agency and being able to give them space any individual, every individual deserves space to grow and see what they can do and you’re speaking as an advocate and as a support. I’d like to bring now on Christine because I don’t know if she’s comfortable with sharing that, but as I understand Christine, you’re Dee doesn’t have power of attorney

Christine:

He’s conserved yeah and that scenario that they just mentioned that Lisa and Bruce just talked about would work for Dee. I mean it does because I think he’s — I would say his receptive language is probably better than his expressive language and what would that mean? He’s not as communicative and able to communicate about his own needs and and it he’s also I think the way he was raised was that he was not raised to be independent right— I mean he was raised in our family and our family always thought okay well he’s going to be in our family you know they never thought he was going to be in a group home. I don’t think they ever imagined a group home and my brother was born in 73 so different time period than Lisa — I mean there were a lot more resources available now and also I feel like there’s just so much more support now and maybe less stigma, so I do think that it wasn’t until he came to California that he was conserved and I actually refer myself as a parent sibling or a second mom because I’m not his mom but I kind of act like his mom sometimes and that’s just part of being a an older sister probably and a bigger sibling but I do think the conservatorship is helpful. It does make it legal right — it does make it official and I haven’t explored too much more in terms of what’s next because I’m still learning that he just — I think he’s been with LSA… I don’t know since before the pandemic…I don’t know the exact year he’s been in a group home and he’s thriving and I think that when he was placed — our family, especially me, experienced this complete opening of wow there’s so much support available when you go and seek it out. There’s so much support available when you’re open to it. In many respects,I feel a little bit sad that my parents didn’t experience that. My dad has passed away, but my mom is still alive and she’s 86 and so it’s just it was just a different time, different experience and also a different part of the country too. 

Hadiyah:

Well that thank you for sharing that Christine. I want to punt it right back over to Lisa one more time because you said something Christine — it made me think that there’s this huge spectrum of what support looks like in each individual’s life — I mean that’s true for all of us as we age right? Genetics, race, ethnicity plays a role in health and sometimes activity and lifestyle plays a role in the type and of long-term care whether or not we’re going to be able to age in place and things like that. Lisa you brought something up where you talked about these Mountain View moms as it got coined and I want to know how many of you went into the same type of long-term care solution for your loved ones, for your sons or daughters. Are there any of you that share the same space? Did all of you pick the same style of care?

Lisa:

No, everybody went in different directions actually. I guess there were some few that ended up in the same place and you know we were learning together one of the ways we got to where we were at is that we went and saw maybe 10 different homes from different programs — literally up and down the Bay and one of the ones that really impressed me the most was the Cypress house and seeing that and was just you know being opened up and just the the organization, the thoughtfulness around it and the fact it kind of felt like it would feel like a family in that house. Made a big impact on me so we did actually have the first client who was in that house as part of the Mountain View parents.  Now there’s a second one which is very very exciting. Also in that house there are a couple, maybe two or three, who are in the Common Roots Farm partner housing in Santa Cruz. That kind of came out of this work that we did together and then a couple others are in other residential care homes so we are the only ones who are still in Mountain View and this is why we are looking for new partners. It’s been a very very heavy lift to get Jeffrey’s house up and running but now we know how to do it and we know that it can be replicated and this community can be successful so looking for partners in this.

Hadiyah:

One thing I want to circle back around — thank you so much Lisa for saying that — I want to circle back around to you one more time Bruce because each of you now have said something that is really common  amongst everything that was said — all of your experiences and I want to make sure that I highlight this before we close out on this particular  conversation tonight — it’s I heard you say that you are all from the east coast — is that right? Everybody’s from the east coast and you came here — and explain to me — just help me understand what was that like when it came to the sense of community that I’m hearing Lisa talk about, i’m hearing Christine talk about with support, I’m hearing you say that there was specific community that you found at Hatikvah where Hillary was able to thrive. Did that mean anything for you? Is that a normal thing?

Bruce:

I wouldn’t say it was necessarily normal — I mean when we all grew up in New York. Hillary is going to be 55 years old this year — she was born 1970, but she lived with my parents the whole time we were in New York and then when we my father decided to retire they moved to San Diego and they were looking for a place for her while she was in San Diego and we were just unable to find one that they liked so she stayed with them. They were there probably about two or three years and then this new house that was being formed — it was revolved around the Jewish faith and Hatikvah is a Hebrew word and I can’t tell you what it means, I don’t remember but the people that were organizing it, all their family members that had disabilities, they were all pretty much kind of on the same functional level so it was a really good match, but it wasn’t the first one. The first one was a house— I think it was in Santa Cruz and it revolved around a lot of cottage industry kind of work. They had beekeeping, they did a lot of gardening and agriculture things like that. Hillary just didn’t — she wasn’t into it and so she wanted something I think a little kind of easier… slower… not so much work to do and then we went to visit Hatikvah. It was a really perfect fit and so Hatikvah was its own nonprofit and it ran itself really well for many years — well over a decade and and then the house manager decided to retire and it was really during COVID hard to find you know folks to step in, especially do it remotely. LSA was introduced to us and the board and the rest is history. I was just going to say that the level of functionality for the I/DD population that’s in AIA is not quite the the same as all the others in LSA but they we were very thankful they took a chance on on us and it really has helped the house to thrive and to help everyone there you know find their right place and  yeah I’ll stop there.

Hadiyah:

Well Bruce, I do want to say Hatikvah actually means “the hope” in Hebrew and rightfully so that we would end on that note because you said a few things that I think I want to echo that it wasn’t necessarily the first place that you found in Santa Cruz and I think Lisa said you know everyone in the Mountain View moms kind of found different things that work for them and Lisa still as we speak building that community that works for her son and and Christine talked about wishing that her father was alive to see the type of resources and support and that her mom was able to experience some of the type of resources and support that’s out there now in comparison to then and rightfully so this particular series is called the community panel because even if LSA as many of us have discovered is right for some — it’s not right for all, but I’d like to encourage you if you’re hearing my voice and you’re listening to this beautiful array of panelists speak about their experiences — that they found their community, that they didn’t give up hope — right? That they continued to find what worked for their son, daughter, brother, sister, loved one until it was right and when it was right it worked out so if you’re interested and you’d like to take a deeper look — try to define your community — maybe you think LSA might be right community for you, your family member and yourself and all to be a part of our community. I’d like to invite you to join us on our next panels learn more about what we have to offer — there’s also a family interest list form on our website that’s in the chat right now. Please, if you’re interested — you’re looking for support, housing or you just want to learn more about who we are — join our family interest list, we’d be happy to learn more about you and to invite you into our community and then finally I wanted to say we’re going to have a really awesome race that’s coming up on September 6 we’d love for you to join us. There’s a huge QR code on your screen right now that you can join — there’s also a link in the chat. That’s a 510K where you can run, walk, you can cheer and then we’ll have a lot of food a lot of fun and some more resources available on that day. You can join us in person — this series is one of my favorite things to do for all of LSA because we’re not asking anything from you except for you to come listen, participate and maybe even ask some questions. We will continue this series later on this week with financial planning. Before I conclude for the evening, I promised I was going to give the floor over to our partners, but before I do — Merrick, Christine, and Lisa  — thank you so much for joining us on this first series. We did not get a chance to dive into the bigger depths of some of the questions that I’m sure you could share with us for hours on, but I appreciate you coming and just sharing a tiny microcosm of your experience over the last few years with your loved one and your sibling. I know Merrick had to leave — thank you so much Bruce for jumping in there and standing on behalf of your family and also I want to thank all of you for coming in and attending. If you have more questions or you just want to continue the conversation with us you can join us online — all of our socials are available on every major platform. We’d love to hear from you and we’d love to hear about whatever it is that struck a chord with you on this particular talk. That being said, Reva from SV@Home is going to join us for a few minutes before we conclude today and she’s just going to share some resources for us.

Reva:

Thank you so much for having me and first of all I want to thank all the panelists for sharing your personal stories with us today — it definitely makes us feel hopeful so I want to talk a little bit about SV@Home. We are thrilled to partner with LSA for affordable housing month. This is a time to come together, learn and take action. This year’s theme is strengthen housing which is a powerful reminder that when we unite across sectors and communities we can strengthen our collective commitment to housing justice and drive lasting change at SV@Home we lead this change through policy advocacy leadership development coalition building and by amplifying the voices of those most impacted by the housing crisis here in Santa Clara County we are aligned with LSA in our shared commitment to  ensuring that everyone in our community has access to safe stable and affordable housing. The webinar series hosted by LSA provides a critical space to consider one of the most important shifts in housing development today that is inclusive design — designing affordable housing for all abilities is not an exception it has to be a necessary in Santa Clara County affordable housing developments like the Kelsey Mitchell Park Place and 1585 studios reflect the shift these affordable housing developments accommodate the needs of individuals with intellectual and developmental disabilities while benefiting entire communities through universal design, enhanced accessibility and shared community spaces that foster connection, independence and belonging. These affordable housing developments were conceptualized by embracing a design philosophy prioritizing people of all abilities informed by real world experience and shaped through community collaboration. This approach to designing affordable housing transforms how we build housing from concept to construction inclusion is not an afterthought it’s a core value one of the critical challenges for affordable housing development is the availability of state funding which is like this main funding source for affordable housing which is highly competitive and overs subscribed — however the good news is that affordable housing developments that dedicate units for individuals with special needs receive additional points and this will make it like easy for them to secure funding. This creates a critical opportunity for us to leverage incentives to advance inclusive affordable housing. When we collectively advocate for it, we are excited to partner in this growing movement and learn from each other, lifting up lived experience and taking meaningful steps forward. I’m just going to share some links where you can look at some of the concepts I shared with you. 

Hadiyah:

Thank you again. That’s awesome. Thank you so much Reva and we’ve enjoyed this sponsorship or this partnership I should say with SV@Home for the last two years because of affordable housing month and so as a part of this continued series, please join us again later on this week where we will have another group of panelists as well as another representative from SV@Home who will join us and continue to give us more helpful links as you can see in the chat and then also tell more about your situation. Join us next week, ask more questions, especially we’re going to have a few financial planning experts who are going to be on the panel and a couple of more people who are going to share from our community that will talk about their experience. Thank you again for all of our panelists who joined us — Merrick and Bruce, Christine and Lisa thank you so much for joining us and we’ll see you again later on this week thank you and bye-bye. Take care!