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Accessible Housing Matters: The Invisible Housing Crisis

Episode 35 - The Invisible Housing Crisis – How the Housing Needs of Millions of People with Disabilities are Being Overlooked

*Originally posted on Accessibility Housing Matters

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Accessibility Housing Matters #35

Fri, 1/21 11:54PM • 29:11


housing, people, individuals, home, medicaid, disabilities, community, developmental disabilities, solutions, support, vouchers, services, desiree, enabling technology, create, accessible, autism, amenities, california, population


Stephen Beard, Desiree Kameka Galloway

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 00:50

Hello, everyone. Today, I am thrilled to be speaking with Desiree Kameka Galloway. Desiree is an acknowledged expert in the area of disability and housing. And I'm just so grateful that she's agreed to chat with me today about her work very briefly. Not only is she the author of a very important study on housing for people in the disability community, but she is also the former director of the Autism Housing Network and has more than 10 years of experience with hundreds of organizations around the United States, developing models, exploring strategies and helping to improve the housing situation for people who are neurodiverse dealing with intellectual and developmental disabilities. Welcome to the show, Desiree.

Desiree Kameka Galloway 01:43

Thank you so much for having me. I'm excited to be here.

Stephen Beard 01:47

I am, too. So let's get right into it. Tell us a little bit more about your work around the country.

Desiree Kameka Galloway 01:54

So my job is so exciting because I get to help local communities understand how they can create housing solutions for individuals with intellectual and developmental disabilities, and then offer them the tools via market analysis, subject matter expertise, connecting them with other professionals around the country, so that they could turn their vision into a reality.

Stephen Beard 02:19

Over the course of my podcast, I've interviewed a number of people who are doing different types of models of housing. Is there a one-size-fits-all that would be perfect?

Desiree Kameka Galloway 02:30

Absolutely not! No! Of course not. Just like the neurotypical population, individuals with Down syndrome, autism, cerebral palsy, I mean, they have different lifestyle preferences, price points, choices and what they want as amenities in their home. Absolutely not! Service delivery models. So there's certainly not a one-size-fits-all. And it's so important that local communities think about the diversity of housing options that needs to be created to ensure that their citizens are not displaced because of lack of housing.

Stephen Beard 03:07

Was the housing problem we all talk about. We all know about the affordability housing crisis in the United States right now. Many of my guests have suggested and I agree with them, it is much worse for people in our community. Has that been your experience? And is it as bad as some people claim it is?

Desiree Kameka Galloway 03:25

Absolutely. So when we think about how our country tries to understand the need for affordable housing, HUD, the administration for Housing and Urban Development and the US Census, they use what's called the American Housing Survey. And what that does is it measures renters in our country, and how uniquely their income is lining up with how much housing they can afford, right. So they're looking at the affordability of the current rental market. Now, the problem with that is that most individuals who have an intellectual and developmental disabilities, they're living with their family caregivers, and so they are literally invisible in the data. And the population. The cohort that really keeps me up at night, are individuals who are living with a caregiver over the age of 60. And because when that caregiver passes, if the individual cannot access housing in their community, they are most often displaced into the next empty bed of a group home or within the adult foster care system where a host home or if worse, comes to worse, you know, in an institutional setting, which we certainly is not person-centered right and doesn't benefit the individual and breaks down a lot of the natural support system that they have built-in their local community. So it's absolutely essential that we start to make this invisible population visible within the housing industry.

Stephen Beard 04:56

How many people do you think are in this invisible group that you're referring to?

Desiree Kameka Galloway 05:02

Over 7 million individuals and very specifically living with a caregiver over the age of 60, about 1 million. And that is an extremely conservative guesstimate. Because of that those numbers are coming from what is called The State of the States and Developmental Disabilities out of the University of Colorado, or from the Residential Information Systems Project out of the University of Minnesota. And the way that they're collecting that data is through the Medicaid system. So if an individual has not interacted with the Medicaid system, or maybe they're not eligible for Medicaid waivers, such as the case with many individuals with autism, or cerebral palsy, for example, they're not even counted in those numbers. So 7 million on a very, very conservative guesstimate. And, you know, if we're talking about broad-spectrum, we would say about 5% of the population if we're going to be a little bit more lenient on our projections.

Stephen Beard 06:00

So this is interesting, the idea that this is a hidden population. And clearly, many advocates are building housing opportunities to try to address this. And I've had guests on my show, who've talked about aging, and how we have aging caregivers, and what a problem or what a challenge that poses, how should we be addressing it from your research? And I understand you visited many, many, many housing developments over the past 10 years around the country, what is the solution? How should we be solving this problem?

Desiree Kameka Galloway 06:33

So I think the first step is making this invisible population visible. And so we've been doing that through advocacy with lots of different organizations, as well as writing a new report called A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities. So the first layer is making them visible. The second layer, which I think is really important, is for us to ask people what they want at the local level. Because what works well in for example, Denver, is might be different than what is going to work in Miami, or maybe in a suburb of Philadelphia, or rural community in Nebraska. And so one of the things that my company Neuro-Inclusive Housing Solutions does is we conduct market analysis. And the process is we first educate those on the ground, "Hey, these are your options. These are your options for our property types, service delivery, supportive amenities," and then we ask them, "What do you want?" And then once we get that data of what people actually want for the future, kind of that diverse market spread, then we can start to implement system-wide solutions, not just for permanent rental housing, but also for asset development. People with intellectual developmental disabilities should be able to own their homes and not rent their whole lives.

Stephen Beard 07:59

You mentioned your company, and I apologize for not introducing your company in the there's this so much to say about you definitely. Anyway, do you primarily, are your clients, primarily government then or nonprofit agencies? Or do you work with for-profit developers as well?

Desiree Kameka Galloway 08:14

All across the spectrum, and really, for us to create a broad spectrum of housing solutions, this has to be cross-sector work. So the government, not-for-profit, philanthropic, and for-profit entities need to come together to create solutions. So I would say I'm often working with multiple partners from those different sectors at the same time.

Stephen Beard 08:36

That's just great. And so do you find that there is a lot of discrepancy apart from the need for things to be local? Do you find that there's a lot of discrepancy from state to state? And the reason I asked you is because I live in a state that likes to consider itself on the leading edge of this kind of work. And I don't know if it's fair or not, perhaps you could validate that. In California here. We do have a very highly developmental disability community, if I may use that word because of laws passed here. But I know a lot of other states don't have such laws and don't have entitlements for that community. And so do you see a lot of discrepancy from state to state?

Desiree Kameka Galloway 09:14

Oh, absolutely. So the Lanterman Act in California really is a big deal because it makes those access to services and entitlements. And going back to why we don't see housing for this population. Part of the reason isn't they're invisible. The other reason is Medicaid had to evolve, right? Remember, it's only been about 30 years since people with intellectual developmental disabilities could even live in their own home. Right? It was 1981 when the waiver system was created. And that's when we were able to waive our rights to be institutionalized in order to be part of a voluntary program in-home and community-based services right, hence the term waiver. So when we think about how each state, how to progress, create their different waivers and what services were going to be part of those waivers. You know, that was really the first step to individuals being able to live in their own home and access services in their own home. And I can tell you that not every state people are able to access services in their home to the level they require. And so, therefore, they have to live in a provider-controlled setting. So there's still work to be done on the Medicaid end. But generally, the fact that we can have living caregivers and with shared living, that we can have rotational staffing by either hiring an agency, or through self-direction, being able to choose your own staff, and hire and fire and schedule them. That type of diversity and service delivery makes Medicaid long-term support services more person-centered, but it also enables people to live in their own home if they so choose. That's only if the state does not have super long waiting lists, which many, many-- most states have California, I know that even though you don't have a waiting list, technically, if someone decided, Oh, next month, I want to move into my own home, you're not going to get comprehensive residential services right away. Right. It's certainly still a challenge and a process.

Stephen Beard 11:18

Oh, yeah. I mean, and yeah, and I've talked on this show with other guests about, even if you have a voucher entitlement through section eight, in the highly urbanized communities where I live, you can still wait years and years and years for the ability to use that voucher, or find something that is going to work. I mean, then you get into the issues of physical capacity of being able to use spaces that are accessible. But I want to ask you about another aspect of this. There's been a lot of push in the last few years among legislators to, especially in very highly urbanized areas to resolve the homeless crisis. And to get people off the streets, which is a laudable goal. Do you feel that works hand in hand with Medicaid expansion and some of the work that you're doing? Or is that sometimes across purposes and I guess I should explain that. It's my understanding that Medicaid in California just got a permission so to speak, it's called Medi-Cal in California, and to to expand and provide some housing support services, which I'm hoping to do an episode on later this year. Some advocates have suggested that that new Medi-Cal focus is on the homeless community. And the housing streams and housing supports that they're talking about won't be available to people in the IDD and DD communities who are who are on Medicaid, even Medi-Cal even do know anything about that. And do you have any thoughts about that, and even in the broader context of homelessness versus people with disabilities?

Desiree Kameka Galloway 12:48

Yes, a lot there. So first of all, I know this because of the market studies that I'm doing. And they have very unique barriers, when looking at the differences between them, and other individuals who even have disabilities as well. And so on one hand, it's very important that we do our best to help those who are unhoused and identify individuals with intellectual and developmental disabilities. And I'm really talking about autism here, because the individuals that we see that have fallen through the cracks are not necessarily eligible for waiver services, right, if they were eligible for waiver services that they'd end up in a group home or adult foster care, but because they're not eligible, then they fall through the cracks and experience homelessness, because they don't have the support, they need to maintain viable employment, you know, the whole executive functioning of keeping adulting together, like that is hard for everybody. So on one end, it's very good and important. On the flip side, if we're focusing policy towards individuals having to be homeless first, before being able to access support, then that's a major barrier. Because people don't want to go into homelessness in order to transition from their family home, they want to go from their family home, right into independent living, so that they don't have so to say, the trauma of having to go through the system because and force yourself into homelessness. In order to get the support, you need. Another point that I wanted to make home and community-based services. So Medicaid waiver services cannot pay for room and board, the services that they're talking about covering are going to be services like helping people be able to find housing, maybe helping them furnish their housing, things like that, that is very different than the everyday long term support services that people with IDD because they have higher support needs, then maybe somebody who has a different type of disability, it's very important to understand that the housing services, they're not necessarily talking about long term support services. And that's that's a very important piece specifically for individuals with IBD.

Stephen Beard 15:03

I'm glad you made that point. And I think it's this is all very new this Medi-Cal expansion that California obtained. And so I think we're gonna learn a lot more about how it's gonna work in the next six months. And it is very limited around the housing piece. But the whole idea philosophically that Medicaid dollars could go towards housing support is, I think, innovative and progressive in the sense of getting away from this medical model. Generally, speaking of serving people and helping them to live full and independent lives, I want to transition story I want to transition to another. I mean, there's so much I want to talk with you about. But I want to talk about technology, because it comes up over and over again, in my podcasts, including a podcast I just did with SafeinHome, which is a company out of Walnut Creek that is doing something called Remote Support Services. And this seemed really exciting to me. And I'm wondering if that is touching your your world and your research and what you'd have to say about fun stuff like that.

Desiree Kameka Galloway 16:02

Absolutely. So in the market analysis that I do, having access to technology is certainly ranking in demand. And I want to make a small distinction. There are technology, which is an enabling technology, which are things like maybe a ring camera, seizure mats, motion detectors, motion detectors in front of a stove, those type of enabling technologies, which are based in the home, and then there's remote support. And that's really the LTSS side. And I find that to be so super exciting. Because I mean, I wouldn't want to have in-person staff with me all the time. If I was able to be supported by someone who knows me who can help me problem solve get through a challenge. Of course, I'm going to want that increased independence. I think though, as we move forward, we have to be very careful with balancing, right? How much remote support can we rely on? But how much in person support does this person need? And how is that going to impact an individual's budget, for example. So I find it very exciting. I think people are going to be into it, especially as more and more individuals use it and share their story. I live in Tennessee, Tennessee has a great enabling technology program. And they have a bunch of videos. So you can really hear the stories of individuals who have, you know, implemented remote support and other enabling technology in their home. So go check out Tennessee's website for

Stephen Beard 17:36

It's the State's website. You mean right.

Desiree Kameka Galloway 17:39

Yes, sir.

Stephen Beard 17:39

Yeah. So do you find that the people that you are talking with people in nonprofits, government agencies, and entrepreneurs and other business people? Do you find that they are, first of all cognizant and eager to help solve the problem? Or to get some stereotypical kind of resistance when you have these dialogues?

Desiree Kameka Galloway 18:03

I have not found a lot of resistance I have. There's been so much support from individuals, so to say outside the disability bubble, but their next question is always well, how do we find the funding to make this work? Right, right. And that's where we have to start innovating and progressing on the housing side, the Olmstead decision, and the Americans with Disabilities Act, and waivers, all of those things are important and good. But they've really been focused on the Medicaid and service provision side. And it is time that the housing industry kind of ramped up their efforts. And I do think that they want to, they just need to know how, which is another reason why we wrote this report, the A Place in the World Report was to just try to be a primer and get people on the same level in terms of the language that we're using, because the language in California, your IPPs and regional centers, you know, that means nothing for a family in New York who don't have those type of systems and might have different acronyms. And so therefore, from the research side, from the consumer side, we needed to create kind of like a foundational glossary of you know, all the different elements that are involved with creating housing solutions. The research is really important as well, because we want to be able to compare apples to apples.

Stephen Beard 19:19

So when you did that study, what would you say are the top three things that you learned that you want to share with collaborators through your organization?

Desiree Kameka Galloway 19:29

I would say the first thing is that in that report, there are two policy papers. One very specifically is on the shortcomings of federal programs. And I was shocked and appalled at the such a small number of units that have been created for what's called Section 811 and section 811. Mainstream Vouchers and non Elderly disabled vouchers. Those are supposed to be Targeting People with Disability But when you look at the actual quantity of those, it is just appalling. It's not even going to meet the needs of one state, let alone our whole country. And that's often what I hear when I'm talking to legislators, they would say, Oh, we have 811 811 program. But the 811 program is certainly not funded at the level to meet the need not even close. So that was one thing that was really surprised, it was really looking at the numbers. And that was quite shocking. And then the other thing was trying to define the difference between, you know, I like to describe housing solutions as a triangle, the top of the triangle is your housing your bricks and mortar, right, you got to have a roof, you got to have the shelter. And hopefully, it's universally designed with cognitive accessibility to the person. And then the next part of the triangle is individualized Long Term Support Services. So can the individual access the services that they need for their specific activities of daily living. And then the third part of the triangle is what we started to define as supportive amenities. So these are things like if a, for example, something like a multifamily housing community, like the Kelsey was, I know, on your show before for them to have a community navigator to help people connect to the broader community, or a job services center where people can go and there, they are actively creating relationships in the community to help people get employed, or even just like a social coordinator to have fun events, you know, once a week, twice a week, those type of staff, those type of people are not reimbursable by Medicaid waivers, because it's not attached to an individual, it's attached to a building. And so these supportive amenities was a really unique aspect of the report that we pulled out that is important for affordable housing developers and others to consider that you have the housing, make it accessible, make it what people want you, they can access their long term support services so that they can get their individualized support. But there's this other element of supportive amenities, which is really the secret sauce of making solutions work.

Stephen Beard 22:06

So tell me a little bit about how you got involved in this work.