Neurodiverse Housing, with Ashley Kim | EDB 210




Elevare Community founder Ashley Kim on housing for those with intellectual and developmental differences

(25 minutes) Ashley Kim is a social entrepreneur, consultant and disability rights advocate.  Her area of expertise includes Housing Development, Affordable Housing, I/DD Residential Program Placement, Disability Rights Advocacy and Home and Community Based Settings Rule and other regulatory and compliance issues pertaining to individuals with Autism and other Developmental Disabilities. 

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Introducing Ashley Kim of Elevare Community  

 DR. HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman, Welcome to another episode of “Exploring Different Brains”. And today, I’m very excited to have one of the few people who’s really tackling one of the biggest, biggest challenges in neurodiversity. I want to welcome Ashley Kim. Ashley welcome.  

ASHLEY KIM (AK): Thank you! Thank you for having me here.  

HR: Ashley, why don’t you introduce yourself properly to our audience.  

AK: All right. I am, I am the president and CEO of Elevare community, which is a not-for-profit organization based in Los Angeles, focused on building housing for individuals with developmental differences. I also represent Together for Choice which is a national advocacy organization that advocates for individual’s rights to choose where people live and receive services and spend time with other peers of their choice.  

HR: Well, housing is something that’s certainly has not come to the fore in the neurodiversity world.  

AK: No.  

HR: How did you get into this?  

AK: Oh, that is an interesting question because that’s something that I get asked all the time because I have no family members that have developmental differences. When I was working as a consultant years ago, I had a family approaching me that were desperately looking for options for their adult children with physical and developmental needs and at that time I didn’t know that autism or any of these developmental differences. So, when I actually started reaching out to the disability community looking for options, there wasn’t much for adults, there were many, many options for children but I actually could not believe that there was nothing available once you turn 21. It’s gotten a lot better even in the last 5-6 years, but that’s when I thought, well, I have the skills in business, and I can figure things out as long as I have a brain. Why don’t I help out this family and try to find some options and that led me to connecting with the rest of the special need’s community all over the country and here I am now.    

Building Communities

HR: Have you been able to connect with any of the other housing advocates, the few that there are?

AK: Yes, Yeah. I think, it’s interesting as a housing person, I try to focus more on the local issues because housing challenges of building housing are very localized, as well as you know, nationwide. But I try to learn from great models all over the country, you know. At first, I started out looking at some great models in California. And when I realized after so many other great teachers out there, I started traveling and reaching out to these communities and we do a lot of advocacy work together. So, in the process I’ve learned a lot from my teachers. So, what I’m sharing today is nothing that I came up with. It’s all something that I am shamelessly copying from others.  

HR: The ideal community I was thinking of, would be a mixed-use community all the rage in multifamily. Carolyn Naifeh has done that a little bit down in Nashville with matching up college students and giving them subsidized housing to room with autistic individuals. It’s paradoxically or ironically, it’s worked out where being a richer experience for the so-called neurotypical than it has been for the autistic individual. What are some of the mixes and matches that you’re finding as you go forward?  

AK: Well, those type of arrangements are very ideal for individuals that are fairly independent. But in many ways, families and individuals that I meet require a lot more of attention to care and while those type of arrangements could work for some individuals, others may not be. And so, for me when I see the type of housing that works beautifully are, you know communities that have what’s called “Continuum of Care models.” So, an individual can actually be fairly independent at a certain point but as they age, their needs change. You know, these types of communities actually have a variety of options available so that that person would never have to leave that community but continue to be a part of them, they’re you know, connected community that there a part of.

So, I have an example where this woman, she actually lived with her mother for many years and then her mother actually died cancer. So, her brother actually enrolled her into a community in Georgia, and she actually told them, the staffers, that she would like to live on her own. And she would like to have a job somewhere. So, they made that kind of arrangement moved her out into an independent community unit on their campus and she actually got a job at McDonald’s. Eventually, she became a lifetime person where she was like a lifetime employee. And she got older she actually started experiencing dementia and eventually, she had to retire from McDonald’s and when she did retire, McDonald’s gave her like a lifetime McDonald’s card where she can go to you know get free food all the time and eventually from independent, she transitioned to Assisted Living, and then from assisted living, she eventually transitioned to hospice care or skilled nursing home actually.

But that experience of transitioning from one level to another was not as frightening for her because she was still under the care of the same people, same community and having the same connection with her family and friends. And in the end, she died peacefully, and her brother actually joined the board of that organization because he felt that it was the biggest gift you know for her sister, that she could ever have be connected to this community until the end of her life. So, that type of arrangement something that I really would like to promote, but that doesn’t have to be an option for everybody, because some people don’t need that kind of care rest of their life.  

Support Throughout a Lifetime

HR: We think of the “Continuum of Care”, we only think of that through old people when they go into a senior house, but we don’t think of it in terms of everybody, the entire spectrum of life. You also brought up the very interesting point regarding ageism that our society inadvertently discriminates against adults. Everything’s for the children. Here at different brains, we start our internships at 18+ because everything’s for the kids then when they get to be 18 to 22, foster care that are thrown out on the street, all the programs in and government programs, everything. And you’ve just got my mind working in such a way, because you see the continuum of life starting much younger than we think of in so-called senior housing, to Assisted Living, to the nursing home.  

AK: You’re based in Florida. So, Florida is actually really amazing when it comes to housing funding. I don’t know if you’re familiar with the Arc of Jacksonville, which has developed 98-unit apartment community, completely affordable. I mean more affordable than most of the other the communities that I know in the country actually. It looks like a really nice gated community neighborhood and you drive around, they are look like single family homes, but they’re actually apartments and about 80% of the units are set aside for individuals with developmental differences and about 20% are for anyone. Not just with differences but everyone that is eligible to apply for those affordable homes. And they were completely funded by low income housing tax credits and state grants and some amount was raised privately by the Arc of Jacksonville.  

HR: Wow. I was ignorant of that, that sounds like a great program.  

AK: Yes, and so the total estimate of your cost to live there including food and everything else is about 900 to $1,200 a month for an individual. That’s actually very affordable.  

HR: Very much so. Wow!  

AK: Yes, and so now, that, Jim Whittaker is the CEO of Arc of Jacksonville and he’s now consulting many other organizations all over the country actually. So, he’s actually working with an organization called Casa Familia to build a similar community down in Miami.  

HR: Oh wow!  

AK: Yes, and they got the tax credit approval last year and they’re pretty much you know busy right now, they already have the vision, they already have the design and they’re in the works.  

HR: Wow. That’s very encouraging, you made my day!  

AK: Well, we learned a lot from those models in Florida and I always go to California’s agency since they, “Why can’t we get those credits for us like the way Florida doing it for their communities out there”. But I think It’s thanks to Jim and many the other individuals in Florida advocating to have a set aside for tax credits for individuals with developmental disabilities. That was a huge you know that was a big win for our community in Florida.  

Neurodiverse Residents

HR: Wow. Tell us about if there is such a thing your average resident who lives in one of your communities?  

AK: Well, Average resident would be, well ok, it really depends on each community, right? So, the Arc of Jacksonville; The Arc Village individuals are fairly dependent. They can for example, I know somebody there he drives in his mid 20’s, he drives. He can actually have a job out in the community and some of the other residents I know at Jacksonville, I actually met up with them in D.C. and we walked all over Washington D.C. all night long. And we had great dinner, you know, great conversation, they can take public transportation, you name it. Just very high energy independent, it’s hard for me to keep up for that. So, These are individuals that you just need a little bit of support, they just need a little bit of support and coaching and guiding and they can pretty much you know learn how to cook, how to take public transportation, how to drive and hang out with their friends and still go and take classes and, you know, engage in community activities.

I think the biggest key for these individuals is that they need social connectedness and they get that from The Arc Village. They walk out, they see their friends. You know I was actually talking to a family whose son lives in Arc Village. I asked them, “Well, does he want to come back during COVID?” Well, they said; Well, I asked him, and he said, “Are you crazy? No, I’m not going to your house, I’m going to stay at my apartment”. So, that’s just such an amazing place where people can actually be very independent but still be connected to the greater community. Another family told me that when they first moved in, they were doing, hosting a birthday party for their son, so, you know, the dad showed up with three large pizzas, but by the end of like second or third hour, he had to call Pizzeria and ask for like another 10 large pizzas. Everyone showed up and his son was so popular for a while because of that party. So that’s where that’s the social connectedness that so many people are, you know, wanting to have right? That’s something we all want. Everybody wants.  

HR: And it’s one of the most underrated things when you talk about neurodiversity. Socialization and then for overall health. All the studies show that, you know, there was a 75-year longitudinal study in Harvard where they follow 75 families. The study had nothing to do with neurodiversity. It was like what makes people live longer and happier lives? And they thought it was going to have to do with their genes, their diabetes, heart disease, cancer. Social connections, strong social relationships blew everything out of the water.  

AK: Oh yeah, absolutely.  

HR: More cancer, more diabetes, earlier death, heart disease, bad health. And of-course dementia and Alzheimer’s.  

AK: Yes.  

HR: You know. I did a very, I made a big mistake when I asked you what’s the average? Because there is no average.  

AK: There is no average.  

HR: All of our brains are different, that’s why every, you know, my daughter taught me, “Every brain is like a snowflake, no two are alike.” And each of our brains are different and each of us are individuals. Is there anything you’d like to talk about that we have not discussed today?  

Housing Resources

AK: Yes, would you like to know about some of the great example communities? I can name a couple of other communities that you would like, that people might be interested in learning more about.  

HR: Absolutely!  

AK: Ok, so there’s an organization called Misericordia, which is based in Chicago, IL. It’s led by Sister Rosemary Connelly, who’s been the executive director for the last 50 years. It’s probably the best or one of the best models in the country that I’ve seen so far, and if we can find Misericordia in Los Angeles or somewhere in California state, I would be so thrilled.  

HR: How do you spell it? How do you spell it?  

AK: It’s M.I.S.E.R.I.C.O.R.D.I.A. It’s Latin for mercy, heart of mercy. So, she took over Misericordia about 50 years ago, moved the campus basically, and started this campus with like one house that was taken over from an orphanage that was closed. Maybe I don’t have to talk about all the details of how it was founded, but since she took over, the organization has grown significantly, tremendously, to a point where now they serve about 600 individuals with needs, from age 2 to the end of life. And they have independent apartments. They also have assisted living apartments. They have intermediary care facilities. In fact, they have the largest ICF in the state, and they have group homes out in the community, about 16 of them throughout the city. They also have amazing bakeries, restaurant, recycling center, gardens, you name it. If you go to Chicago, and you just tell stranger’s like, I’m here to see Misericordia, people know that, because they’re so visible out in the community and people say, “Wow, I love their bakery, I love their restaurant” They’re out and about. They’re very visible. They’re well integrated into the community. And what they do is that you know, basically that’s another prime example in you know, a continuum of care. You can be there from whatever age, as long as you need the services, until end of life. And families are always together and what they say is that, “You know, Misericordia doesn’t take their kids, they raise with them.” You know, they take care of their children with the family. So, all the families are very involved. The amazing thing about them is that they invest heavily in their staff. So, medicaid reimbursement does not cover enough. Especially when you want to pay their staff well. So, their annual budget, you know, they usually have a deficit of about 20 million dollars because they pay more to their staff than you know, the industry level. But they raise that 20 million dollars every single year, and more. And so, it’s like a you know, if I had a child in Illinois, I would like my child to be in Misericordia and so many families are so grateful to be part of that community.

So, that’s one example and I mentioned about the Arc of Jacksonville which is another great example and Casa Familia is you know about to start that journey or they’re actually on that journey right now in Miami so they’re going to be such a blessing to many families in Miami and surrounding areas. And there’s another organization in California would be a remiss to not mention any great organizations in California. So, there’s an organization called Casa de Amma. So, it’s founded by the Leatherby family whose son who was graduating from Riverview in Cape Cod, Massachusetts. And the family recognized that, until their son went to Riverview, he basically had no friends. And so, at Riverview, that was the first time he experienced friendship and social connection and the family wanted to continue that and when their son was approaching 21, they said, “Well, where do go, and how can we continue this amazing journey?”. So, they actually brought a piece of land in Orange County California and built this amazing community. It looks like a really nice apartment, very luxurious apartment actually, that has about, that serves about 35 individuals. They have their own apartment units. A few of them have roommates and many of them, about I think 90-95% of the people actually have a job in the community. Job paying job, minimum paying, at least minimum wage and volunteer jobs as well. And it’s been such a blessing to many families. There’s a long wait list to get in there. It’s divided into two types because so many people want their child into Casa de Amma, and many of these individuals are guided to be independent and also to be, you know, to be a contributing member of their greater community.

So, when I go to Casa De Amma it’s like a party. Everybody knows each other. They’re also, you can’t ever get passed anybody without having to introduce yourself because when you’re entering Casa De Amma, you’re entering their home and you have to introduce themselves and let them know why you’re there and so that’s just such sense of ownership and such a sense of community and something that is so valuable and beautiful and some families, some individuals actually have gotten married there and they live together and the staff guides them through their relationship and up’s and down’s of their relationships. Many people actually date and break up and the staff would actually kind of guide them through the breakup’s as well. So, you know, they’re experiencing real life. There’s, you know, something so raw and real about them. So, that’s a beautiful community. I would love to see more of Casa De Amma type of communities popping up all over the country.    

HR: Wow! (Laughs.) Sounds like a great place.  

AK: Yes, and you know, I… It’s such a blessing for the founder of Casa De Amma to fund this whole development. And that’s the thing, we always need angles like the Leatherby families and other families that are able to fund these types of development. If no families can do that, then we need to ask the government to provide funding for our type of housing. Unfortunately, all over the country, housing is a big challenge for everyone, so you really have to step up and be as loud as possible and advocate for our housing because our group is not as vocal as seniors, veterans, homeless, and other special needs category group. So, you know, whenever I reach out to you know Washington D.C. or Sacramento in California, they always say that we’re not loud enough, we’re not advocating enough. I think Florida has done an amazing job, Jim Whittaker and others in Florida have done an amazing job advocating for the special needs housing for people with differences. But for the rest of us, we need to do more.  

HR: Well, you’re certainly doing a lot and you’re helping a lot of people. And looks like you’re having a good time doing it.  

AK: Yes, I love it. (Laughs.)    

Final Thought

HR: Ashley, what’s the one thing the general public ought to know about housing for the neurodivergent? 

AK: That there’s no one size fits all. We need models that meet different needs for each individual with developmental differences.  

HR: Well Ashley Kim it’s been such pleasure. Thank you so much for being with us here and we hope you’ll come back.  

AK: Well, thank you for inviting me. I would love to come back.