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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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