PODCAST: Episode 26, November 8, 2021

Living Unlimited – Developing Housing for People with Intellectual & Developmental Disabilities

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SUMMARY KEYWORDS: people, house, housing, home, stephen, residents, developmental disabilities, farm, living, neurotypical, children, intellectual disabilities, parents, families, unlimited, program, services, property, alex, providing


Alex Krem, Stephen Beard

Stephen Beard 00:01

Welcome to Accessible Housing Matters. I’m your host, Stephen Beard. I’m a real estate agent and an accessibility specialist. I got into real estate to being the agent for people with disabilities and their families. Through my work, I’ve met 1000s of people. And now I want to share what I’ve learned. Each week, my guests and I will talk about accessibility and housing. Over time, I’ll explore many different aspects of the subject from a wide range of perspectives. Together, we’ll learn about some pretty cool stuff, and inspire you to new ideas, discussions and actions that will really make a difference. Because accessible housing matters.

Stephen Beard 00:48

Hello, everyone. Today I’m with my good friend Alex Krem. Alex is the chairman and founder of Living Unlimited, and he has been working and serving people with disabilities for more than 60 years. Welcome to the show, Alex.

Alex Krem 01:03

Stephen, thank you for having me here. It’s an honor.

Stephen Beard 01:06

The reason I wanted to speak with you Alex was to learn about Living Unlimited. What is Living Unlimited?

Alex Krem 01:12

Living Unlimited is legally a Delaware charitable Corporation. It was founded about five years ago to create housing for adults with intellectual disabilities and to take away from their parents feet number one nightmare that they all have what happens when I go, what happens to my child,

Stephen Beard 01:34

and it was created five years ago. So what has it been doing?

Alex Krem 01:38

Well, let’s see. There are about 50 rural communities in the United States providing housing for people with disabilities. I raised my children, neurotypical thank goodness in New Zealand on a farm, and I realized coming back to California, where I was not raised on a farm, what benefits that had for them. So I set out partnered with a woman named Susan Riggle to create not one farm, there are 50 such very successful projects around the country. And I could provide information to anyone who wants to know about them. The challenge with those is that typically they are started by families who are looking for a place for their child. And they’ll work like crazy, 5 years, 10 years, 20 years to create a property for their child. And then naturally they spend the rest of their time managing that property. And all the benefits of learning are lost. So every new group that starts has to reinvent the wheel, there’s no economies of scale, there’s no corporate memory. And when we set out we said that’s nutty. The first one is the tough one, they get easier and easier. So why don’t we just set out to create more than one so that our first committee was established in Cloverdale, California called Clearwater ranch, and that’s designed to house 24 adults with intellectual disabilities. Our second one is in Petaluma, which will house 12 or 15, depending on what the zoning allows. And then that becomes a anchor for other houses in the neighborhood that don’t have land so that single family homes within walking distance can share the farm without having to to purchase an additional property that gives us more economies of scale. But early on in our process, Stephen, we were hijacked by our third director. He loved everything about it except for the farm idea. So he said, What about an urban orchard? How about one Meyers, lemon tree and a chicken? Does that count? And we thought about it and we said sure. So suddenly our mandate went from that 5% or 10% of the population with intellectual disability that we thought we were serving to everybody. We are now working with a group in Alameda for a 15 bedroom, triplex that has no farm, no minors, Myers lemon tree, and probably no chickens, but it will provide good housing for people with intellectual disabilities.

Stephen Beard 04:16

Now, Alex, I noticed you mentioned intellectual disabilities, you don’t mention developmental disabilities. Do you make a distinction there?

Alex Krem 04:24

No. The the shorthand is I stroke DD, intellectual or developmental disabilities.

Stephen Beard 04:32

And would this include people with physical as well as cognitive challenges?

Alex Krem 04:36

Absolutely. Although many people with physical disabilities are not interested in what we’re doing. If you’re a very bright person in a wheelchair or lacking sight, you will find the IDD population not so interesting. So that we have served a number of people who lack sight and a fewer number who cannot hear and lots of people in wheelchairs, but they have in common this intellectual or developmental disability. In the past, we’ve had great charming people in wheelchairs, they’re bored. They don’t want to be with our crowd. And, and and so they don’t stay

Stephen Beard 05:17

is that because of their independent living skills are more advanced?

Alex Krem 05:21

Yes, they’re independent, they’re independent living skills are much more advanced and they’re emotionally more advanced. They’re intellectually more advanced. They’re, they’re not watching the same things on TV that people who have intellectual or developmental disabilities.

Stephen Beard 05:40

Alex, what is the financial model for these projects?

Alex Krem 05:45

Okay, thanks, Stephen. The the model is a patchwork quilt. The housing itself, the bricks and mortar, windows and doors are privately funded by parents and families and banks. We’ll come back to that later, I think, so that we do not look at public assistance for housing. Although there are many programs for public assistance, they’re a little too complicated for us so that we keep it simple. We’re asking families to pool their resources and to buy properties, then those properties are maintained bank loans repaid through SSI, which is a program administered by the federal government designed for housing and food. Incidentally, food is also helped by the Federal Food stamps program. So that parents money provides the housing we call that a private equity model. And that money is contributed to a limited liability company, the limited liability company buys a property and the parents are members in the LLC, that gives them the right to sell out if they want. If the program doesn’t work for their child or their child passes away. This is an asset that belongs to the family. They can hold it in their trust, they can put it in their child’s special need trust. We don’t have provide any legal advice here.

Stephen Beard 07:14

But they are co owners of the property in that sense.

Alex Krem 07:18

Yes, that’s right. They are co owners of the property. And it’s a limited liability company, which means it has a board of directors and and an operating agreement and the parents run it. Living unlimited provides management support. And I see that as training wheels. Eventually, the parents know one another. They know what they want. They establish a common ethos and our role diminishes.

Stephen Beard 07:44

So are all of the residents, family members of the parents that have bought into the LLC who are members of the hill LLC?

Alex Krem 07:54

No, Stephen ours, ours is an unfamiliar model. We want our residents with intellectual disabilities, developmental disabilities to be living in their house with neurotypical people. So we typically have a two to one ratio.

Stephen Beard 08:11

So before we go any further, like, some of my listeners may not be familiar with the term neurotypical, can you share what you mean by that?

Alex Krem 08:20

In the good old days before we were all politically correct, we would have said normal people, people who lacked intellectual or developmental disabilities, people like you and me, you are neurotypical despite your cane.

Stephen Beard 08:36

Okay, so tell me more about this on mass. You call it on mass model?

Alex Krem 08:41

No. Yeah. On for meal. That is fine for me. I’m sorry. Yeah, yeah, family style. We want our residents to be living in the same house with people who aren’t disabled. We want them to go shopping together. We want them to cook together, claim together, go to the movies together, work in the garden together, because we think that’s best for everybody. And we distinguish between what we’re doing and group homes for institutions which serve their purpose. And I won’t say anything that isn’t good about them, because we need all flavors of support, no matter what they say in Washington. And so that that what we want to see is one person like Stephen or Alex, for every two people, like the children of our friends.

Stephen Beard 09:27

Are these adults, though, these residents, typically

Alex Krem 09:30

Yes. Typically, they are over 22. The state of California provides a generous support mechanism. The schools take care of our children until they reach 22. So typically, the children stay at home because the whole schooling thing gets complicated. I have spoken to parents whose children are much younger and typically are much more hard work and in theory, where we would welcome them but we find that most parents regard of how difficult their children are plan to keep them at home until 22.

Stephen Beard 10:04

I remember when they were closing the developmental centers here in California, there were various models and various housing that was being created and provided for people who would be in this group of intellectual and developmental disabilities. And some of the standards for accessibility or the some of the standards they had to meet in the housing was far higher and had far much had far more rules and aspects of it than the typical kind of accessible housing I talked about on this show. Did you find the same thing as you develop these sites that you had to meet a certain standard around, for example, Gurney accessible bathrooms? Did you have to meet that higher level for these folks like some of the folks did, who were placing people coming out of the developmental centers?


We didn’t have to, but we’re doing our best to do that. Because these are private homes owned by groups of families whose children happen to be developmentally disabled. We’re under no requirements from the ADA, or other mobility issues. But nonetheless, we see to it that each of these homes has at least one ADA compliant bathroom. Not because we have to because we think it’s a good idea. We want houses where our children can age gracefully in place. We don’t want them to say Oh, well what happens when you become old and feeble, so that we have that in mind.

Stephen Beard 11:32

Are services provided at the housing or do the residents go off site for services, for example, day programs or other types of services that are obtained and received by people with intellectual and developmental disabilities?

Alex Krem 11:50

Let’s distinguish here Stephen between supported living independent living services which are provided in the home. And so some of our home companions. These other neurotypical residents in the homes were quite happy if they are SLS contracted to the company providing our services. So those are typically provided in the home. But because Washington DC knows more than everybody else, they make the rules and we add living unlimited last a full year when the Center for Medicaid and Medicare Services announced no bundling of services, their bet Noir is institutions and it breaks my heart because institutions are a good thing. And let me be the first to say that if no one else has, we threw the baby out with the bathwater in my opinion, when we closed Agnew’s when we closed Snowbird Development Center, and I have it on good authority that the mortality rate for the Medically Fragile when they left Sonoma Development Center, the mortality rate went up 5x. These people were safe when I was a little boy, my dad would take me to it was then called as Sonoma Hospital. And these people there, they didn’t have a lot going on. They needed a lot of help. But they were housed, they were closed. They were fed, they were love, they were okay. And now they’re not. My favorite dark joke. Is this. Steven, what did you call homeless people before Ronald Reagan was governor? What did you call them? Patients? They were living somewhere they were cared for the state said we have an obligation to these people. And now that obligation is fulfilled by writing a check. And it’s both more backwards

Stephen Beard 13:37

so that we could get into a whole political discussion about self determination and about the way it’s going. But I do want to learn more about your, your your housing development that you’re doing, because it says it seems like a significant quantity of housing. And I want to learn more about it. So tell me where we’re at with this. Do you have people who are now residents in any of these places? Or is when when you’re coming online? That sort of thing?

Alex Krem 14:01

Yes, that may come to that. I want to I gave you the wrong answer to the last question because I was politically motivated. We we are limited to providing housing, only our original model was full service soup to nuts. We’re not allowed to do that.

Stephen Beard 14:17

Because of the institutionalization. You’re not allowed to bundle I get it. That’s

Alex Krem 14:21

That’s right. So we had to choose housing as a place to start. Anna Wang has a wonderful 20 year old program a day program. It’s the best. I know you’ve interviewed her. I met her at your I met you at her meeting so that she has already a day program which is the best so for her to add housing next door was very easy. She’s very clear that that’s not her housing, that’s housing by the parents whose children come to her program. She’s done a very correct job of separating. And because we didn’t have a day program, we’ve started with housing and We’re providing services through independent contractors that provide SLS supported living services to our residents. And our residents have to go somewhere else for their day program, we have wanted to create our own day program in disguise, different Corporation, different board of directors, and the our masters in Washington are quite clever. You cannot have the program next door. And I think that some of these people are flying under the radar screen. And we’re grappling with that, but one beast at a time. We’ll get to that when we can. And so we look toward other independent providers of day programs to come pick up our residents at eight in the morning or nine in the morning, take them somewhere and bring them back because CMS says that the program cannot be on site, which is nothing if you have a farm. I mean, you cannot collect your eggs on your farm because you’re living there. So I’m sorry, I’m back on the soapbox. I’ll get back to your question. Our families joined together with our help, we act as a catalyst, create LLCs purchase properties, the children of the members house their children there, and services are provided by somebody else.

Stephen Beard 16:22

So how many people are in have moved into these two projects you told me about off the top? Where are you at in terms of residency?

Alex Krem 16:31

Stephen, we’re just getting started. We have our first house in Cloverdale. fully situated we have four young men with special needs living there. And we have I dare use the word neurotypical home companions living with them. We also have a terrific company providing SLS services. One of the residents in the home is an SLS provider. The other one is not. He’s a computer software guy, he comes and goes he loves Lego, which is lucky for our kids, because they love League Lego too. And when I say kids, our first house, the youngest is in his early 30s, the oldest in his 50s. So they’re not exactly kids anymore. And apropos of that conversation, one of them had been in a group home for 20 years when the managers or the group home decided that it was time to retire and their equity in that house was their retirement. So they sold the house and and my friends had to scramble and find another house for their son, which they did. And 20 years came and went and they suddenly saw the handwriting on the wall that this young man would soon be out because the operators to the group home were cashing in. And they came to us because of that, even though their son was well housed in a daycare in a group home at the time.

Stephen Beard 17:53

You said you’ve got one house occupied in Cloverdale. And you told me that there are going to be 2024 adults. So that’s a number of more houses that are still going to be coming online. Do you anticipate that to happen in the other projects next year? Are you looking at 2023 for Petaluma and Alameda?

Alex Krem 18:12

Okay, well let’s let’s talk about Clearwater ranch first.

Stephen Beard 18:16

This that’s the Cloverdale site.

Alex Krem 18:18

That’s fair. That’s Cloverdale This was built in the mid 80s for foster children with who were at risk. And for us it was a dream come true. Five very large houses, four cottages, huge gymnasium, little swimming pool. We have that now the first house is occupied. The second house is now under renovation that will be occupied this year. The third house will come on stream next year and one a year for five years. And then we will expand it a bit because we one of the houses is quite large and it’s now leased as a as an elder care facility. And we like that integration. I wish you had been with us last Halloween when our Popeye and Snow White descended on a house full of 90 year old witches and wizards. It was terrific for everybody. One of the old gals actually cried, I think enjoy when she was serenaded on the piano by one of our residents, one of our future residents so that we we don’t really want to take that house back from its current tenants. We would rather build another house for our people and keep the oldsters there Illuma. We have two properties. One is under extensive renovation, the other is in good shape that rented to outsiders and we target next year 2022 For residents of the big house on the farm and the first of our five cluster homes. We have our eye open for other homes in that neighborhood to buy because our five acre farm is located just at the edge of the development so their houses for sale there. And Susan regal has identified two with swimming pools, and the owners there don’t know that we’re waiting for them to sell the houses, we want to be there to buy them.

Stephen Beard 20:10

So what has been the biggest lesson that you’ve learned in the last in this in the last five years and developing this project that is going to guide your efforts going into the future?

Alex Krem 20:20

Okay. They, they the the, the biggest lesson I’ve learned is that everybody has got their own idea. And that bringing groups of families together is not very easy. And coming as I do from the world of investment banking, people do what I tell them to do, or, or I fire them, that doesn’t work. And the process has to be much more collegial and collaborative, which can be tricky. Because if you’ve got 10 people, then you’ve got 10 different opinions, unless one of them is from Harvard, then you have 11 different opinions so that we’re having a hard time getting people to agree, they always do eventually, you know, that they’re that the famous stages of development, the storming, norming performing. And that became a surprise to me. I didn’t see that in my past life. But but it’s working out fine. And leaders, leaders rise up to take the mantle, and others find a way to contribute without spoiling things.

Stephen Beard 21:24

So you say you come from the world of investment banking, but yet we know you’ve spent 60 plus years in the disability world. What What got you first of all, what got you into what you got you interested in the work you’ve done in the disability world and into these projects? Where do you get your drive and your passion from?

Alex Krem 21:44

It’s the ghost of Hamlet’s father. My father did this when I was in high school, I was a good son, and I was happy to support his efforts. And I started there. I was the first counselor in a summer camp and ended up as chairman of the board. And that’s where my 64 years have come in Camp Krem? That’s, that’s a recreational program and what moved me into living unlimited. Steven, is that Camp Krem? No kidding is terrific. We solve all the parents little problems. What do I do this weekend? What do I do this summer, and the children of all ages love it. However, we do not address the real problem. And that’s what happens to my child when I go. And so living unlimited does that. And so, camping unlimited was going very well in my daughter’s capable hands. And I started living unlimited.

Stephen Beard 22:35

So how can people get in touch and learn more about your project? Maybe if they’re interested in models in their own state or other for their own families? Or maybe they’re interested in what you’re doing in these communities? How can they get in touch with you?

Alex Krem 22:53

Well, the best thing is to visit our website, which is www.living-unlimited.org. There’s a dash between the living and the unlimited, or to telephone me 510-610-3555 or email me at alex@living-unlimited.org.

Stephen Beard 23:16

That’s great. I’ll make sure that’s in our show notes. Any last thoughts?

Alex Krem 23:20

Okay, there is good news. Nothing that we’re doing or that other people are doing hasn’t been done before. It’s a question of, if you have a need for housing, and if you are disabled. If your Stephen Beard can help you or we can help you or Anna Wang can help you, or Heidi Carton can help you. There are plenty of initiatives in California and around the country for housing for people with disabilities. You don’t have to do it yourself. One of our people has a wonderful quote, which I’ve adopted faster, alone, further together. You can’t do this by yourself. Find other families whose needs are similar to yours and who are emotionally simpatico to you and join together. You can start a farm or buy an apartment together, you don’t need Alex Krem, we can be helpful and we’re happy to help you even if you’re not part of the living, unlimited crowd, but don’t despair. There’s a lot of deer in the headlights paralysis, Stephen, where people don’t know what to do. And because these problems are not only large, but they’re pushable over till tomorrow, that people tend to push them over until tomorrow and before you know it your kids 40 years old and holy smokes, I’m running out of time. So that find other people who have done it or who want to do it, join with them. Keep the faith and keep after it. Don’t put it off. It gets harder.

Alex Krem 24:54

Wow, that’s that is inspiring and I really appreciate your service. Saying that and sharing it with my listeners. And thank you so much for your time this afternoon.

Alex Krem 25:04

Stephen, thank you so much.

Stephen Beard 25:09

I hope today’s discussion was valuable for you. If you liked the show, don’t forget to subscribe to the podcast so you don’t miss an episode posted on social media, invite friends, and let me know if you have any suggestions for future topics. While you’re there, I’d be so grateful if you leave me a review. Your feedback will help me to improve the show. Do you have a question about the show? Email me directly at stephen@stephenbeard.net. You can also check us out on Facebook by searching Accessible Housing Matters or by visiting our website at accessiblehousingmatters.com And all this can be found in our show notes. Join us next week for another great conversation about why accessible housing matters. Thanks for listening!