I/DD Topics & Trends with Astri Doub

Astri Doub, Author of Ability Innovation – Solutions & Innovative Approaches to Placing an I/DD Loved One in Housing

I absolutely loved the book and I particularly loved your introduction and I just wanted to read a couple of sentences. “Rob is my older brother. He’s a swimmer, a bowler, a horseback rider, and a music appreciator. He is also nonverbal, and has autism and down syndrome, but he is not defined by his intellectual and developmental disabilities.” It’s such a beautiful introduction. What was it like, growing up with Rob?

Astri: I’m just so happy you’re asking about that. I could talk about my brother all day, every day.  So as you can imagine, I worshiped him throughout my life. He’s my  best friend in the entire world.  As a kid, I never really considered the differences between my experience having a brother with an intellectual disability, particularly who’s nonverbal, kind of different from my classmates. I’m very close with Rob. He always showed me from a young age that people were different. And we were all unique in different ways.  I think, as we’ve talked about so many times before, he’s first and foremost, an individual. And he’s a unique individual with all of these different interests, who’s amazing and wonderful. And who is one of my favorite people in the world. And obviously, autism and down syndrome profoundly affect his life as they affect mine, and this introduced me to the IDD community. It has introduced me to so many amazing people in that community who I wouldn’t have known otherwise, but autism and down syndrome is not who he is.

What led you to write the book, Ability Innovation?

Astri: Like I said, my brother is my best friend in the entire world. And I don’t think I ever thought about what would happen after he graduated from high school.  That was when college still seemed vague to me. And a job still seemed kind of out in the distant future.  And it wasn’t until my brother turned about 16, and my parents started discussing housing, and what that would look like for him. Then I really became aware of what was going on. And in particular, as I talked about, in the book, we visited one home once just to see what it was like, and it was an intentional community. And I remember looking at it, and it was an amazing place. Incredible. But I was like, this isn’t right for Rob. And I compared it to college visiting because at the time, I’d been doing a lot of college visits. So I don’t think he was going to end up here. There’s going to be better places. And I remember at the end of it, my dad saying this was one of the best places I’ve ever seen. This is one of the best places in the country. And it was very upsetting to me, not because it wasn’t a wonderful place, but because it wasn’t right for him. And why should there be three best that aren’t going to fit everyone’s descriptions? 

And I think I’m very privileged in that I have parents who are taking on this response as so many parents and guardians who’ve been through this process. It’s so long and time consuming, and so much goes into it. It’s a lifetime commitment. But for me, because I’m a sibling, and I wasn’t at the forefront of that. I was like, well, I want to see the best things going on. And I think also just because he’s my brother and I want the best for him. I needed to know that they’re amazing options out there, and I needed to find them and make and bring them to Baltimore however I can, so that I can be active in this housing process. So I really considered it a privilege that I got to kind of take on the more positive aspect and try to look for and see the best. I just started talking to people and reaching out and connecting, which is how I came to Ability Innovation. It was really the people I spoke to, like you, Dana, who really wrote the book.

In your book, you identified the four core areas that help define a group home. The first one was the design of the house. The second one was the staff, the third was the culture, and the fourth was the procedures and programs of that organization. Can you take a bit of a deep dive into those four areas and share what you learned?

Astri: I think with any categories, there’s overlap, and there’s contradiction, and I kind of organized those based on themes I saw, but there’s so much more that goes into it. I think funding particularly I don’t go into as much because it differs state to state. But obviously these are just four categories I decided to focus on. I started talking about the pathways to a home and finding a home, and different options there. I think that was also the process I was in at that moment, looking for options. I think anyone here who’s a parent knows that finding the right option is very difficult. I talked about one time in the book, my mom and I were touring a provider, and at the end of the tour, they told us, “Well, you can get on the waitlist, but you don’t really think he’s gonna be at one of our homes, like we have a huge waitlist, and you’re not even in this county.” It was a lot of just constantly looking. And it’s interesting thinking about this category now that my brother is three weeks in a supportive living environment in Maryland. I was thinking, what does this category mean now? I think it’s just that constant re-evaluation, because the home you live in when you’re 20 might not be the home you want to live in when you’re 40. It’s just human; I don’t plan on living in the same place for 20 years, but maybe that works for some people. 

So in this pathway to home, I found what different organizations were doing. You can find existing service providers like LSA, and find a home which has an opening. There’s also creating your own supportive living environment, an organization which helps people create their own living environment as partners for housing. Their structure is when you’re not going to go through a provider, and you’re going to work with another family to pull your services and make housing. And so that’s maybe another option that’s going to work for different people. Then another thing – maybe you don’t want to go in a singular group, but maybe you want to explore different community living settings. And in that case, there’s going to be homes which are already created like Camphill and Pathfinder Village which are both in New York. 

There’s different ways to kind of go about it. And that’s a process that constantly needs to be re-evaluated. So that’s kind of the first and then design. So design takes on so many different forms, which I talked about from there’s design empathy, which I mentioned in my book, which is just what color do I want the walls to be. Maybe someone with sensory sensitivity is going to have different colors, they want to compare it to someone who doesn’t have those sensitivities. And that kind of relates back to housing. When I’m choosing a roommate, let’s make sure we’re on the same page with that, let’s make sure the families are on the same page with that. And design can also be more into voice controls to turn on the lights. And as we know homes are becoming smarter, so how can we utilize that technology? And I think it’s funny, since my brother just moved into this house three weeks ago, and I want to make something for his room, and I made him a collage of photos that I have with him or him with his friends.  And because I was like that’s fun that makes it home. You don’t want to be in a hotel lobby when you’re sitting in your living room.

And then staff relationships, which is something that I mentioned LSA in for you for your practices. The most important thing I’ve said in my book is cultivating a positive relationship with the staff, which LSA has done so well. I think almost all of us probably have heard horror stories about someone who was either unreliable or maybe didn’t feel like they were treated right.  That’s my biggest fear; my brother getting used by someone or being uncomfortable with someone. The connections in our life are what make it rich. And I think that relates to that final category of community, and how we are building community. And I think that’s also another thing that LSA does so well. And even when you were talking with Brian last week, about how your organizations have worked together to create lives for people to create really enriching experiences. 

I know my brother is nonverbal, so his relationships with people are very different and has to be kind of facilitated by my family who drives him places and to his direct care providers. And so if he goes home, and he doesn’t have people he can connect with, even if he’s going to a day program every day, depending what’s he doing, in the afternoon and the evenings, it can be very isolating. I think this is a place where there’s also so much opportunity, and where intentional communities have become an interesting option. Like one option is Three Oaks and Sailing Michigan, and they’re a development company, which builds communities, and they’re trying to expand it to other places, but the community is that people are buying homes, knowing they’re gonna live next to group homes. I think I’d love to live in a community with group homes and make those connections with people, whereas other people might have fears or concerns about living. A lot of people have unfounded fears, living in communities with group homes, which is such a missed opportunity. But then this can also take more organic forms. That’s reaching out to the community members, reaching out to the neighbors, making sure they’re not afraid of what they don’t know.

Is there anything that just really jumped out at you that if you were looking for a group home, how would you know that it was a good one?

Astri: I’ve seen a lot of great group homes which I was told my brother would be on the waiting list for for 10 years. I think staff are just where it shines through. How are people being treated? How are people treating one another? In Illinois, which I discussed in my book a few years back, there were people being abused in group homes, and it was a systemic issue that wasn’t being addressed. And one of the biggest things was the staff abusing residents. And then because the residents were hurting, they weren having abusive relationships with each other. And that was the part that was publicized, that said, look at these people who aren’t behaving as they should, who can’t live in a community because they have outlashes.  But that’s not to say if someone has different behavioral needs, that they’re being abused, obviously, but it’s to say that we need to see how people are treating one another in order to better understand the culture of the place that they’re at.  And I do think even looking at the home helps. Ask the questions like, how can I find a home here? And then if it’s an urgent situation, how can I make myself a home here? What can I do? What organizations? How can we connect with neighbors? How can we add fixtures to the walls to make it feel like a place we can connect with?

What surprised me most when writing this book was that this was a world that I was going to be entering, the housing world, through my brother, that I knew nothing about before. And that most people know absolutely nothing about. If you’re not working in this community, if you don’t have someone connected to this community, you’re often not aware. And I think that’s what I was so shocked and upset with my own lack of knowledge that I think one of the takeaways is this needs to be something we’re talking about, because the more we’re talking about it, the easier it’s going to be for a parent when they have a kid who’s going to require supportive living, for them to have a wider support group of their own friends who aren’t as connected to the community to help them and to make the best housing option possible.

Dana: Yeah, I was just thinking, as you were speaking, for me, it’s always been about the culture of treating each other with respect.  It’s okay to have differences, but we treat each other with respect. If you can get there, it sure goes a long way. And I think it’s a lot easier for each of us, to be on the receiving end, and it feels good. You bring such a fresh point of view to this whole topic.

You started to talk a little bit about takeaways and advice, so if I was a parent and I had a 16 year old, what are the takeaways for me? What advice would you give me for  embarking on that process?

Astri: First off, I mean, parents are incredible and amazing. And everything you do is so important, and so valued. Even if it always doesn’t feel like it; I just wish there was more recognition. Everything my parents do for me, I’ve kind of brushed off. It’s so difficult. And there’s so much and I think when your expectations for what your kid is going to do with their life change. I always grew up with my brother having a disability, and I don’t know what it’s like to find out that your child has a disability and how those expectations change. And I can’t possibly imagine what that  is like. And so that being said, I think the advice I would give is looking at all the options and looking at the different things that you can do. And it’s talking to people, even if there are organizations that have years-long waiting lists. It’s talking to other parents and trying to find support with other parents. It’s contacting or talking to me about your fears with it. What are you hoping your child will get out of it? What are they hoping for? What are their hopes for their life, and how can we make that possible? And I do think looking at the different types of housing is a very valuable thing to do to better understand how you can make your housing solution. 

One who comes to mind is Mark Olson and Point Rider and their organization helps design intentional communities. What they’re doing is that they hope to go across the country. And they’ve already helped some people in Texas and in Cincinnati, with building an intentional community, which also has workspaces and consulting people on that process. So maybe you don’t plan on doing that. That’s a huge undertaking, which most of us just simply don’t have the time to do or the resources at the moment, but maybe talk to them, what are they thinking? What do they see as key aspects of the communities they try to build? And how can we incorporate that into whatever housing solution gets created for your child or loved one? 

There’s a lot of services we don’t even know are out there, and that’s also everyone’s entitled to a service coordinator. And that’s so important. If you don’t know that, look into it. Get a service coordinator who can help you figure that out. That being said, also my family has had to go beyond our service coordinator to learn about different options and different sources of funding, which could be best. So that’s a long winded way of saying to connect with everyone you can and talk to everyone you can and have those conversations and build that community. Because this is a topic that a lot of the pain and suffering that went on for the last century and housing was because people weren’t willing to have conversations. So we need to have those conversations.

That reminds me of the history component of your book. Maybe you could just share a little bit of that. We all should learn from history and the lessons learned, but what about that history?

Astri: There’s so many things that are so incredibly horrifying. I think the history for me was something I also researched from a personal standpoint; once my brother walked into a family party, and everyone got really quiet. And that usually happens when my brother makes an entrance. And it was a little rude, and I think my parents were a little shocked that people weren’t being more welcoming. At the end, a distant cousin came up to my parents and said, “I had a son with down syndrome. And we sent him to an institution, it was in the 60s, and he died there. Pretty shortly after his birth, maybe and I always regretted it.” And knowing that, I have a relative who I could have known, and I could have had a connection to who, whose life was needlessly ended because of disease that was spreading at an institution. That always really struck a chord with me, and always why I feel like learning about history is so incredibly important. 

If you ever want to read a book directly on history, Dr. Nielsen has the “Disability History of the United States,” and I think it’s an incredibly great resource for getting an overview. And an important point is, institutions were created as schools, institutions were created because people thought we should educate people with intellectual disabilities. But that was the goal of the schools and it wasn’t the schools. I know my brother wouldn’t have been accepted to these kinds of schools, since he can’t speak and require supportive living, and they probably would have considered him an “idiot,” which was a term for the people who had required the most support, and they weren’t accepted into the schools, which is also upsetting. So it was to send someone to prison, basically, was the only option. 

But anyway, so there’s these schools that were created to educate people and then send them back to the community. And then when you start seeing people start to be educated, but then their community doesn’t want them back, and their parents can’t take them back. And then eugenics comes around at the turn of the century. And there’s the science, what if these people don’t reproduce? What if they don’t have the right to that? What if then we can end disability? It’s a ridiculous claim, and it’s incredibly terrifying. But it became, “Let’s put them away.” These are problems for society. There was actually a list published in Maryland, of the problems for society, and it was homelessness, prostitution, and disability. 

With that, everyone wanted to send these people away and put them in institutions. And I think it was Dr. Howe that was one of the founders of institutions to schools. And he warned against this. He said, “I feel like people are getting sent here. They can’t be getting sent here at these rates. These places can’t keep up.” And that’s what happened. They got more and more filled. It got to the point where at some places they had troughs for eating like pigs at the institution in Maryland. And they kept people locked in basements with no stimulation.  It’s so crazy. And the peak was in the 60s. And even though there were advocates who were against it, Robert Kennedy was a big advocate. He went to visit an institution in New York, and denounced it. Geraldo Rivera published a famous story talking about Willowbrook, but it didn’t change. It was an issue to get excited about, but then nothing really came of it. At least in Baltimore, our local institution didn’t close until 2009. Even when my brother was born in 1999, doctors suggested looking into institutions. Then you hear stories about families who raise their child with autism, or down syndrome, or cerebral palsy, any number of intellectual disabilities in the home and send them to a group home, which were created in the 80s. 

So there is this timeline, but it’s important to remember this went on into the 21st century. And people getting murdered was going on until the 21st century. Remembering that history is so important because we can’t let it happen. That being said, it also means we can’t be afraid of intentional communities, and communities, which are predominantly people with disabilities. Because then you see the other end of the pendulum, and you’ll probably talk about this in future weeks. Desiree Kameka Galloway has been a big advocate about this; that a lot of states don’t want to have intentional communities, because an institution was a group of homes, predominantly people with disabilities. We need to be so careful about that, and we need to be looking at these homes, and we need to be actively involved in them. But we also have to recognize that a community predominantly made up of people with disabilities might be where someone wants to live might be where they’re most comfortable. We never learned about all of this in history. Our public school curriculum doesn’t mention US disability history. And is a huge category, but it’s also the largest minority in the US people who are disabilities. It’s the only category to which any of us can enter at any time.

Dana: Yeah, it’s certainly true. Generally California considers itself to be so progressive. We’re closing some of those institutions, just the last ones in the last couple of years. And we closed ours in Santa Clara County here in 2008. And the history of that one is that it was for mental illness. So that’s, that’s what it was and dating back into the early 1900s. It was a place to isolate the crazies. I hope we never hope we never forget that.

What’s next, on your journey?

Astri: That’s always the question. Right? I think it’s interesting. When I asked that in my book,  I had no idea. And then, in the past couple months, the service provider who provides the direct support for my brother had a house that they operate, which had a room open up and we met the other roommates who are incredible, and they’re some of my closest friends now.  So obviously, he’s still in the early stages, fingers crossed, we’re still working on the transition. But for my family, it’s starting on this new chapter and this new process, which we couldn’t have gotten to without years and years of looking. And considering the best options, and also still now looking at how we are making this place a home for my brother? How are we developing the community? How are we building his relationships? And I think what’s next for all of us? Not forgetting.

Well, that reminds me for those of you out here, who haven’t read Astri’s book, How can they get it?

Astri: It’s right on Amazon!  And also, please reach out to me at any time, I’d be happy to talk to you about where you are on the housing journey. Or if you’re looking to develop a new housing solution, these are conversations which need to be had. We need people who want to innovate, who want to build in this sector. I want to mention that I think getting siblings involved is also a big process. And I want to say if there’s any parents who ever want to talk about how to address the sibling relationship, It’s going to be difficult and different for every sibling. I have a support group at college, which I started with another kid. But I think I really do think that sibling involvement is going to be a big part of the future because siblings, relatives, and parents are the ones who are going to help spread the word and help make people aware of the issue and housing and the solutions which are needed.

Here in the Bay Area, we’re working on a model where we have a cluster of homes within supported living within walking distance from each other. This would create a community within a community. Have you seen this in other places on your travels and research?

Astri: Yeah, that is incredible, first of all.  I’m just so excited to hear about that. I’d love to hear more. I think Three Oaks, which I mentioned before, they’re also kind of within a larger community, and they’re making it more like the neighborhood where all people who have chosen to live in an inclusive housing environment. Not everyone’s going to have a disability. Anyone can buy a house there. People are aware that there will be supportive living so it’s kind of that same thing like clustering, supportive living options near each other with this kind of awareness for everyone. Another huge international organization, which has group homes is Blowers. They have a model kind of talking about giving and receiving and staff can learn as much as they can give is kind of the backbone of their thinking. 

But in Boston, they have a lot of group homes within one area, and they do a lot of coordination together. I think LSA also has amazing connections between the group homes. There’s so many facets of LSA, which are so amazing, which I wish I could have touched on further in my book and which you can obviously touch on.  Another group is Building Ohana, and they’re trying to create a live, work, learn community, which is also similar to I talked about LTO ventures, and Desiree will be on here later, and her organization is working on a community like that also. This is where people live with and without disabilities in similar communities. But it’s also more focused on kind of the environment, and it’s a very all encompassing culture. So the people living there are all directly involved in the group homes.

What do you suggest when there are not enough group homes in your area when your child would choose a group home?

Astri: And I guess that is the problem right now. Dana knows this, because it’s a crisis in the US since there’s not enough housing options, and we need them. We need them very, very urgently. It’s difficult to say because there’s no easy answer. And it is  exhausting all the options. We visited homes that were six hours away just to see what was out there. And I think that’s a valuable thing to do even if it doesn’t end up working out. I do think another organization to look at would be Partners for Housing. They’re the ones that provide consulting services. They’re only in Washington, Arizona, and New York, right now, and they’re looking to expand to other locations. But they have a lot of stuff on creating your own supportive housing option, which is also an option if you want to create supportive living and work with other families to do so. Because if you work with other families, you can pull your resources in a way to make it a financially viable option that’s not far off from a traditional provider like LSA. And also please connect with me. I’d love to talk further about that and find other options.

In Dana’s previous conversation with Brian, they discussed the need for collaboration on a local level, what can be done to increase collaboration to national scale? And should organizations look beyond local communities to collaborate?

Astri: I think that’s a very big thing that is expanding and going beyond. I think that’s what we’re doing right now. I have one person who’s done an amazing job with looking beyond is Mark Olson, the founder Point Rider, and their organization consults people on creating intentional communities.  He was just reaching out and was just visiting places. And fortunately, he’s been able to make that into a full time job, most of us can’t do that in a full time job. But I think one organization which you will learn about in the coming weeks is Autism Housing Network, which has houses across the country, and they’re trying to increase their database of tons of living options, so people can make those connections.

Dana: I guess my comment on it would be that it sure would be good if we did had more national collaboration going on. But I think a lot of the funding does come from the federal government through the state governments, Medicare or Medicaid. But housing, or at least traditionally, housing is always local. There’s talk about help with housing on the federal and the state level, but it’s relatively rare. So, most organizations find themselves working locally to find funding for the house part of the equation. And it also kind of comes back to the F word that was mentioned earlier which is funding; that is actually a big deal. And most of these systems have been underfunded systemically over time, and I think it relates back to that history that the people that we’re talking about, were marginalized and isolated for decades, and so they were never a funding priority. And so I think we always have to remember that for our advocacy is our number one priority to be advocating for adequate funding, and making the conditions to add capacity favorable. I love to work with others locally, love to work with others on a broader scope, but sometimes it’s hard to focus on the issues because it is a complicated area and system.

How can schools promote inclusion more and promote awareness as the students move on to college in the workplace?

Astri: There’s kind of two sides to this question. There’s a lot of schools which have integrated classrooms, and you have the opportunity to interact with people with disabilities. My school did not have those opportunities. So for many of my friends, the first person they ever met with a disability was my brother. And this was in high school. So I think making programs available is so incredibly important. I started programs with my brother’s school, any connections we could get and any time we could go over there to help out and create those friendships. It’s about growing those organizations especially for colleges. Also, my college does not have any programs for people with intellectual disabilities. In fact, I feel like I’ve seen a lot of ignorance, and I’ve heard the R word a lot, and I’ve had to correct a lot of people. It has to be individuals making those conversations. Providing safe spaces for siblings is so incredibly important to allowing them to feel comfortable to then talk about their sibling. And at my school, we didn’t have a support group, and me and my friend met, because we were both siblings. And we talked for like three hours about that experience, and we’re both sobbing at the end. This needs to be a constant conversation, and anyone in this community needs to be a part of this conversation. 

And so please talk to me if anyone you know wants to start a sibling group at other colleges. I don’t know of any others besides ours. And we want to connect with as many siblings as possible. There are sip shops throughout the country, but they close a lot. I’ve looked up one in my community and it closed. A lot of them just have gotten support, because it’s maybe not prioritized, but it’s a really valuable experience. I think sibling support groups are the way siblings feel comfortable talking about their siblings, and then can talk to their friends about their sibling, and that’s how we increase inclusion.

Our son, Robbie is 21. And he is so fortunate to have three brothers who love him so much. As a mom, I don’t want to add anything to their plate, but I know that they will outlive us. How do you recommend talking to and involving siblings when Robbie is only 21? And are there any clubs at colleges? Or did you start one for siblings? 

Astri: Yes, And I think the parent sibling is a very complex conversation. Yes, I started a group, and I was talking to another sibling and we were like, “Oh, my gosh, we need this. This is really important.” For the conversation with siblings, my parents never wanted to put it on my plate, I was the one who brought it up and we’re gonna start the process of giving me co guardianship over my brother. Because I want to have that I want to make sure I’m available. Because he’s my person and I need to make sure that he’s going to be safe, and I’m going to be part of his life in the long term. It’s a huge responsibility though. 

And I get why my parents never wanted to put any pressure on me to have that view.  I think just articulating to siblings that you’re not putting any pressure on them that you’re going to find support. That’s what my parents said, they told me, “We’re going to try to find a housing solution and find a community for Rob. So you can do what you want with your life, and you’re not beholden to coming back to Baltimore and being with your sibling.” And I think that articulation and communication was always very valuable. That being said, if siblings want to be involved in the guardianship process, that was kind of the first step for how I can be involved. The conversation isn’t a clear one andit’s many conversations. It’s just about having communication about what’s going on. And again, I think meeting other siblings has been very helpful for me and figuring out what my relationship to my brother is going to be when we’re both adults.

Dana: Well, I gotta say, Rob’s pretty lucky to have a sister who’s so involved and will be involved in his life going forward.

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Learn more about how LSA provides housing and services to I/DD individuals

Bryan Neider, CEO of Ability Path – Provider of Exceptional Programs & Services

Who do you serve? And what programs does AbilityPath offer?

Bryan: We operate in San Mateo and Santa Clara County. We like to say we have a lifespan of services. So our programs start with early assessments, as well as a Family Resource Center. We then have multiple therapy programs, occupational speech, physical therapy, early interventionists, we operate three inclusive preschools. And then we have a wide array of adult programs from independent living services to support employment day programs, community access programs. So we serve folks from the very youngest age into senior hood. 

So what makes your programs at AbilityPath so exceptional? 

Bryan: I think that for all of us doing this work, it starts with having an incredible team. We have very dedicated professionals, both within the therapy practice, our early childhood education teachers and our special education teachers. And of course, the folks in our adult services program are very passionate about the work and I think their dedication really shined during COVID and really showed their support and care for the community that we serve. So I think it starts with our people.

Can you talk a bit about the Diversity, Equity and Inclusion programs at AbilityPath?

Bryan: During the summer, we did a deep dive on the state of our diversity, equity, and inclusion in our programs. We certainly have had an inclusive focus for individuals with developmental disabilities, but people are not one dimensional, and they have many aspects to who they are, their background, their religion, and their ethnicity. We actually brought in a third party firm to do a full audit of our entire organization top to bottom on where we stand with the quality of our diversity, equity, and inclusion. That report was shared with all of our staff and the board. And we have made a very strong commitment to be a leader in diversity, equity, inclusion, and all aspects of what that means for our team, for those we serve, and our community at large.

Were there any obstacles you encountered in implementing your diversity, inclusion, and equity program?

Bryan: I’m happy to say that our teams have embraced it. I have been very vocal in some messages that we’ve sent out going back to a year ago. And obviously, since then, I’ve probably only received a few emails that were not supportive. And honestly, at some point, I think in life, you have to take a stand. And the stand that we’ve taken is that diversity, equity, and inclusion is critical to our mission. I think we have a moral obligation to ensure everyone in the community is fully accepted, respected, and included.

What does it take to run an organization like yours that serves IDD individuals?

Bryan: I think the first thing is that there is an element of authenticity about what we’re trying to accomplish. And sometimes that may mean providing some messages about shortcomings that we’ve had, but being upfront about that and I think also painting a vision of what the future can be. And I think that there’s an element of commitment to making change happen, because we work in a system that has been chronically underfunded. But that can’t be a roadblock or an excuse for not driving positive change, and program improvements forward. So I think it is an element of perseverance, an element of compassion, a lot of creativity, and innovation. And, being a good listener for what the folks that we serve are telling us and what our team is telling us that they need as well. 

How do you ensure that the staff and AbilityPath have that great attitude?

Bryan: I think the kind of great equalizer in that is having a culture that fosters that kind of approach. And so I think after some point, either people join in that exuberance in having a positive attitude, or the rejection from the team around them may actually let them know that that’s not this is not the place for them to be. So I think the team actually helps set the tone and the tenor for having a positive attitude. And one thing that we’ve tried to reinforce that I think has been helpful is that our role is to be life coaches.  And we sort of take that approach, we’re here to help the folks that we serve reach their full potential, without limitation. And if we’re life coaches, it’s a very different kind of role in how we think about our role of serving.

What are some of the challenges that a service provider like AbilityPath faces?

Bryan: I think it’s one that we probably all face being in the Bay Area in particular. It is the cost of housing for our staff, for those that we serve, and having adequate housing for both the community at large and in our teams. I think commutes have also been an issue. So if folks are living across the bay, or from South San Jose commuting up to where our locations are, that’s been a challenge. So I think most of them are structural. And then, the chronic underfunding has been a challenge on how you manage that. So things like that are really important to understand how it works on the entire community that we serve and trying to understand better ways to serve.

What’s going on with the state budget?

Bryan: So the latest that we have, as of this morning, is that the state assembly in the State Senate has proposed that the rate study or funding study the state and Department of Developmental Services did several years ago; they’re proposing that the full recommendation be implemented over the next three years. We don’t have any inkling what the governor is going to do with that yet. So maybe something happened this afternoon I’m not aware of. But our understanding is the governor’s reviewing all of the budget. And we’re not sure where the developmental disability system sits within that proposal.

As you know, the system has been underfunded for the better part of 20 years. To give you an idea what that gap is, the gap identified by the study that the state paid for was about 1.8 billion, which is nearly 20% of the entire system. So I don’t know if any business can operate at a 20% operating deficit from what they need, with rising costs for housing, and cost of living for our staff. And yet you think about what we’ve done. It’s remarkable how resilient and creative every service provider has been to keep things going. And in a weird way, that’s probably been to our detriment, because I think that sometimes when it comes to the budget, they maybe feel like we’re crying wolf, when in fact, there’s been a lot of structural investment that has not happened, which is necessary. And we’ve seen the crisis really play out in the last three or four years. And I am really guardedly optimistic that we’re going to see some funding coming back into the system that is long overdue.

Is there something listeners can do to help swing this in favor of what’s been proposed by the legislature?

Bryan: There are a couple of things. The first thing is that we have a tool that you can go in and easily fill out your name, and email, and a message that will go straight to the governor and will tell him that you support the funding of the rate study gap that the Assembly and Senate have already approved. So I’d say check out the website, you can go to the ARC of California, they have it on their website, CDSA, which is again, a service member organization. There are multiple places they can go. Go in and fill it out tonight, and send it off and get it to the governor. The last time we had a major campaign like this we had about 40,000 letters and emails that went to the State Assembly and State Senate to provide funding relief. So I’d say do that if you can and reach out and let them know how important this is for our system.

Are there any areas that I missed that our listeners might be interested in?

Bryan: One other thing about this funding challenge: we have a very robust development team, and we have to raise about 10 to 15% of our funding for our programs through donations and donors. We’re at about a 20 plus million dollar program, so this gives you an idea of what that funding gap is at the state level. So if it wasn’t for donors, supporters, and grants from various foundations, it would be a real challenge to be able to keep all of the programs operating at a high quality level. So we’re blessed to have a very supportive community that allows us to do that.

Is there anything else that folks can do to support AbilityPath? Obviously, the donations really help, but what else can people do?

Bryan: Now that we’re coming out of COVID, there’s always volunteer events and we have various activities throughout the year. I’d encourage folks to check out our website at abilitypath.org. And there are all sorts of volunteer opportunities. And wherever you can, have an inclusive mindset. So whether or not that’s employment, if it means you have a child in a program that may be there’s a special needs kid in the class, include that kid in a birthday party by inviting them. I’ve been in parent groups where they’ve talked about what they described as the shrinking social circle for special needs parents. And they said, as time went on and as their kids age, the invitations to participate in events with their friend’s kids started to shrink. So I would encourage everybody to be inclusive in your mindset in all aspects, where you can bring people in to be part of it. And I think that’s a great way that I think carries on our mission for everybody.

What is AbilityPath’s success with corporate sponsorship? And what does it take to get significant fundraising initiatives with corporations? 

Bryan: I think we’ve had good success. So there are two places where corporations have played very important roles for us. And I’m certain of many other organizations. One is we have a kind of a marquee fundraising event each Spring. And we’ve had quite a few corporate sponsors that are lead donors and underwriters for that event. Many of them have been employment partners that have supported our employment program on their campuses over many, many years. The other is building relationships with corporations from volunteer events that end up leading to support for employment opportunities, and or engagement and fundraising events. One they were just talking about earlier today, in fact, is that we had an aqua-thon pre-COVID, and this was swimming teams primarily sponsored and put together by local corporations. So folks at Google, LinkedIn, Intuit, and others would put together swim teams. And we’re fortunate, they picked our mission to support and they helped generate a fundraiser, but that’s how they got engaged. And obviously, their donation along with corporate matching gifts have made a difference. It’s easier to work with someone that you may know in the company. Many of the larger corporations have community affairs folks, community relations, that help oversee those kinds of activities.

The other thing that’s happened in the last few years is most large employers have created employee resource groups. So they will be topic based, usually employee organized, and everything from an employee resource group. I’ve had a chance to speak at a couple for the special needs community for those company’s employees, and talk about what we offer, talk about other services that are out there from other providers. So that’s another way if you have an opportunity to talk to them with an employee resource group, you can share your message and your mission with them. I hope that helps.

How has the company culture at AbilityPath and LSA been affected by the pandemic? 

Dana: I think the pandemic definitely challenges our culture, whether it’s what we’re talking about ourselves individually in our families, or whether we talk about the organization, because it forced us to cut down on human interaction and being out in the community. And so, I think it was a challenge from the beginning. Some of the ways that you can overcome that is to try and up the communication using video tools, like Zoom. Everybody kids about Zoom fatigue, but it sure helped a lot to put people together, face to face, virtually. And whether that was the residents in our homes, with their families, or with their friends, or with their programs. And so, I think all of that really helped soften the impact. As things are starting to open back up, we see a lot of smiles and a lot of excited people that do really miss being engaged and included in some of the activities that they knew and loved from before. So we’ve got work to do,  to re-engage, and hopefully re-engage in a better way. Not just return to normal, but hopefully continue to move the needle forward.

Bryan: I had a very similar experience to what you described, Dana. And I think the lack of connection certainly strained relationships and it was more of a longing to see people. You’d sort of notice that whenever there was an opportunity to tell you to get together in some setting, even with a few people being in the office at the same time, it’s like you’re on a desert island, and you had seen somebody for the first time in a year. It’s pretty remarkable. Same sort of thing, just this joy of seeing people again. So I think it was hard to stay connected.

But you know, I think as we come out of it, while we’ve all been fatigued at points throughout it, when you look back, it’s, I think it’s the importance of having a higher calling. And the higher calling is to serve. And when our teams have looked back at what we were able to do during the pandemic, there’s an enormous sense of pride, but also an enormous sense of satisfaction of: “I worked really hard, and it was tough. But I made a difference in somebody’s life.” For me, I feel like this mission found me. And I feel blessed to be able to be doing this work. How often you get to be able to spend your time and energy trying to make a difference and help people out? And I think our teams feel that same thing through the pandemic. And that doesn’t mean there wasn’t a bad day of zoom when you said “I’m fried.” But in retrospect, we made it to the top of the hill, and people feel good about it. And we now see that kind of camaraderie coming back like we went through the war together, and we survived.

What do employee listening devices do in order to improve employee experiences? What types of things do you put in place in order to listen to them? Do you do town halls? 

Bryan: We do an anonymous employee survey. With every team, we do an individual team survey. So it is essentially twice a year organizational wide. And then individually within each unique discipline. So therapists will have one, adult programs, etc. We have town halls. We take the surveys very seriously.  I have held open Zoom hours for people to dial in or open office hours for people to stop by. I attend multiple manager meetings, some staff meetings, and then in this last year, we created employee resource groups in our own organization, and so those are another way to get feedback, We have the DEI Alliance Committee, which has been very important providing direct feedback to us on our organizational health in the DEI area. They’ve had a great influence, they drafted our DEI statement, which you can see on our website. So we use all those tools.

I assumed in all this, that you have to have a culture that feels comfortable sharing the truth. Because it’s one thing to have an anonymous survey that leaves things out, and it’s another to hear a story from somebody that thinks something needs to be changed. And so part of it for myself and for managers is being able to be comfortable with hearing things you may not want to hear, but you have to hear. Because people are reluctant to tell you sometimes the truth for fear of reprisal. Or you may take it the wrong way, where you take it too personally, when in fact they’re trying to share with you because they care about the organization.  That’s not to say that we aren’t all human, and sometimes feedback hurts. I’d rather hear it and be able to change it, then not here and have everybody talking about it behind my back. You have to be willing to listen to hear the hard stuff and make people feel comfortable having shared it with you.

Group homes and small providers have really struggled with inadequate funding. Is consolidation a solution? What are the pros and cons? 

Dana: That’s a totally timely question. Just six weeks ago, a small provider approached us, because they were looking at going out of business. They were not able to find staff and we’re in talks to make that organization part of ours. I think there is something to the notion of scale. Sometimes bigger is not better, but certainly bigger can be more economical, at least in terms of certain areas. But it’s particularly difficult for a small provider, because they have all the same problems a bigger one has, but less resources to be able to throw at solving them. So I don’t know what the real answer is, but I think if we continue to not get some resolution on the rates side of things, it’s going to happen more often. And it always comes with a huge impact on the people. This particular home has four individuals that have lived there for upwards of 20 years. And you know, the possibility of it just closing with three weeks notice to find something else is heartbreaking. As an organization, we’re certainly going to do what we can to continue to grow. When I came to LSA we had three homes, and we have 14 today. And it wasn’t easy to grow, but we grew by partnering with donors and organizations that we work with to do that in a thoughtful way that we believe is sustainable. 

Bryan: I think mergers are absolutely necessary to improve the overall delivery of service. If you think about all of the infrastructure that multiple organizations have, there is no efficiency in that. And that means that cost has taken away from going into staff salaries. And so we’ve done three mergers; two smaller ones, a therapy one, and then we took over a program that had to close its doors last September during COVID. And then in 2019, we did a larger one with Abilities United and GatePath. And that was a much larger merger. The savings from the administrative functions and everything kind of in that allowed us to significantly increase compensation for all of our staff. So pretty much everything that we saved from that area went right back into program investment, laptops, smart devices that do case management, and staff salaries. So it’s very different from a traditional merger in a for profit space.

So I think one of the pros and cons assessments right up front has to be: is there a meeting of the hearts? Do the organizational cultures blend together well enough to where they’re going to be able to carry the mission out? Because the cultures are too far apart, it’s going to really impact service and employee morale in a very negative way. So I think they absolutely have to happen, it’s just a lot of duplication of so many areas. Accounting, HR, IT,  Marketing, Development work, and all that stuff becomes a real challenge if it’s duplicated over and over again, versus actually being able to put that back into staff. 

If you could wave a magic wand right now, and change anything about the way that we provide services to the IDD community, what would you change? 

Dana: I guess it’s in the whole area of regulations. Adult residential facilities have to be licensed and vendorized. It’s just so constraining at times that some additional flexibility would allow us to be even better. An example might be meeting the minimum staffing hours when there are more hours and are needed to provide the right level of care and support. But you got to go ahead and provide them because otherwise  bad things will happen. So, a little more flexibility. We unfortunately live in sometimes overly bureaucratic systems, and I think that wastes a lot of money.That would be mine. I’d wave it with some caution, but it would come in handy.

Bryan: With Dana’s wand, we’re gonna get the funding. So I think my wand is really more around society’s perception of what’s possible for the people that we serve. And I’ll use two examples. One is that when the Special Olympics first started, there were very few events. The population we serve didn’t change. What did change was society’s perception of their ability to participate in nearly 100 events now, versus a half dozen. And the records that they’re setting and the abilities that they’re demonstrating have always been present. It’s been society’s limitation that they put on the people that we serve. And we did a thing with Genentech where we had job coaching and interview skills, and all the folks that we serve that were participating, put together dream boards, and on those dream boards, human aspirations are universal. It doesn’t make any difference who you are or where you live. We want friendship, we want love, we want happiness. We like beaches, we enjoy the sun, we love dogs and cats, and some people like fancy cars. The reality is that we hold back the people that we serve by not thinking big and listening to them on what their desires are. So I would ask society to think a little bit differently, and listen harder to believe what is possible and make it happen for the folks that we serve. 

Missed the live session? Watch the full recording on our YouTube!

Learn more about how LSA provides services to I/DD individuals

Happy Valentine’s Day!

There are many things to love about LSA. One of the most important is you! Your love, dedication and support has enabled us to grow to 14 much needed homes throughout our county for our developmentally disabled adult residents.

This Valentine’s Day our wish for you is that you are healthy and happy. We appreciate all that you do; not just today but EVERY day.

You are helping us to Create Homes, Change Lives. From the bottom of our heart, we thank you. 💙

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Office Move Website Version

In all that has happened in 2020, we are happy to start 2021 fresh by moving into a new office building more suited for our growing organization.

LSA was founded by parents who had a dream of establishing homes for their adult children with special needs. In 2002, LSA began a journey to establish quality homes and nurturing services so that adults with developmental disabilities could receive life-long services while living in a community, not an institution. LSAs believes all people with developmental disabilities have the right to live life to its fullest in our community. For 24 hours a day, we care for and support adults with special needs in neighborhood homes of Santa Clara County. Through personalized programs focused on skill-building, we make a difference in the quality of our residents’ lives, enabling them to reach their true potential and we are excited to continue to do so!

Thank you all for supporting LSA. We look forward to you visiting our new office in the near future.

260 W Hamilton Ave
Campbell, CA 95008

2020 The Art of Inclusion Virtual Program

What: Art Collaboration (Art Collage Class) with Rohini Deshpande

Who: Residents and Volunteers of Life Services Alternatives

Final Virtual Event and Art Auction: POSTPONED to January 2021 due to COVID-19

Why: The Art of Inclusion 2019 art program was a big success last year with over 30 participants from three organizations including the Triton Museum of Modern Art who hosted our final art exhibition and community event. This year our program and event will be done virtually and connect many of our LSA participants to more volunteers. This is a collaborative art project that will bring the community together during a time when we need inclusion and togetherness the most. 

How: The project will take place for one hour every Monday starting Mid October mid-November 2020 via Zoom call. With a final digital art exhibition and virtual live auction throughout the event. Each participant will be paired at random with a partner and will come to each class to make progress on their part of their artwork. All art materials will be provided through the program to ensure everyone has the same resources and materials. The instructor will provide more details for the theme of the artwork and class size limits as the date approaches. The week before the live auction and throughout the week after the Triton Museum is to host an indoor exhibition.  

AOI Final Flyer 1 e1607469281540