I/DD Topics & Trends with Desiree Kameka Galloway

Desiree Kameka Galloway, Director of the Autism Housing Network – Key Trends in I/DD Housing & How It’s Changes Recently

What are the housing options that are available to adults with disabilities?

Desiree: Well, individuals with intellectual and developmental disabilities can live in their own home, and then choose a service provider to provide them with that daily support that they need. Now the challenge with that, of course, is being able to afford housing, because housing is so expensive. Some families are able to purchase a home for their loved one. Or maybe you can access the Housing Choice Voucher where you can live in an affordable housing community. That is one option is for you to live in your own home, and then to choose your own service provider and the ways in which you want to access your services. The other option is that you can live in a provider’s home. And that’s sometimes called a provider controlled setting. That’s like a group home or a host home; I was a host home provider, so a young man on the autism spectrum lived with my husband and myself. And we supported him and he was part of our household for a few years until he decided he wanted to move into his own home. Now, I think it’s really important that people understand the difference between the provider controlled homes and one’s own home. Because housing can look many different ways. It could be a tiny home that’s added to a family’s property. It could be an apartment that’s in a typical apartment building, it could be an apartment that’s in a planned community. It could be a single family home that maybe you share with others. So housing can look lots of different ways. And it’s important that in the future, we make sure that people have lots of choices so that you get the support that you need in the home that you want to live in the community that means most to you.

Could you talk a little bit more about what’s happening throughout the country in this area?

Desiree: Well, it’s no surprise right. And I’m probably preaching to the choir that we have a really big issue with supply and demand. There’s certainly not enough access to housing nor services for the population of people with neurodiversities. It really is at a crisis level as we’re seeing parents age, and difficulty finding housing and services within one’s own community. Because what happens oftentimes is that an individual is having to be displaced or leave their local community in order to find a solution, a residential solution. But I don’t just want to say that there’s not enough, because there’s not enough a lot of innovation is happening, it’s really exciting to see how local communities are like, “you know, what we know, we don’t have enough opportunities, and maybe the opportunities we have don’t meet the needs of everybody. And so we’re going to create new solutions.” And that’s where I come in, I try to help local communities not reinvent the wheel, and kind of see what kind of options are available and what other people have done. We just recently released a report, that’s called A Place in the World. It’s a free download on our website, but it has a lot of information. And it includes a housing market guide, where you can actually see 12 different innovative properties from all across the country. So that could be a really good start, when people are starting to look at what is new, and what is exciting, and what is happening, kind of in terms of future trends. I would say when we’re talking about very specifically individuals on the autism spectrum, we’re starting to realize that almost all individuals on each side of the spectrum are falling through the cracks. So for those who might be college educated, they’re able to get through college, they do not have an intellectual disability, they’re diagnosed on the autism spectrum, but they’re unable to make a living wage, and therefore they can’t afford housing. And sometimes that population cannot even access Medicaid services because they’re not disabled enough. Therefore, that part of the population on the autism spectrum is falling into homelessness. They truly are at risk of homelessness. And then there’s those on the autism spectrum who have very high support needs, life threatening support needs such as pica, elopement, maybe self injurious behavior to the point where they’re causing multiple concussions, and detaching the retinas. Those individuals who have very high support needs are unable to find providers that are going to be able to meet their needs, on the very limited dollars that Medicaid gives providers. So we see this gap for individuals on both sides of the spectrum who really are falling through the cracks, because our system is not recognizing their specific needs. Hopefully, this is changing. But it truly is a challenge.

You mentioned quite a bit of innovation going on. And I know, some of it’s documented in your report, but maybe you can give a good example of some innovation that you’ve seen?

Desiree: Yeah. So I would say one of the biggest things that’s happening,  is that I think COVID really has launched this awareness of social isolation. And that there’s a lot of families who are concerned about their loved one just living in an apartment, like a typical apartment building, or living in a single family home with just a few other people. They’re really concerned about social isolation. And so there certainly is a trend in terms of developing housing, that’s a planned community. So the housing is designed, thinking about people with autism or other intellectual disabilities in mind. So maybe they use certain design elements that are also cognitively accessible, not just physically accessible, but they also include supportive amenities. So maybe they include things like life skills classes, or planned activities, a community navigator to help people be able to access the community, a jobs coordinator to be able to find places of employment. This option of a planned community has certainly garnered a lot of attention and interest in families because of that social isolation piece. And, these communities are not always just people with disabilities. There are many examples of communities planned communities that have been developed with a population of people with I/DD in mind, but are certainly including the neurotypical population as well. So I would say that’s a really exciting opportunity because what that has done is its created interest in the affordable housing industry. For a long time, people with disabilities couldn’t access services in their own home. This is kind of a new thing that has come up within the last few decades. And because of that the affordable housing industry doesn’t really recognize people with autism, down syndrome, or cerebral palsy as needing affordable housing. And so we’re finally starting to garner some more support from the affordable housing industry recognizing that  this is an invisible housing need that has yet to be met. So that’s very exciting.

What are some of the trends that you’re seeing? And particularly, maybe that has emerged in this time of COVID?

Desiree: Yeah, so something I’m pretty excited about is the use of technology. When COVID hit, we were in a major bind in terms of being able to have direct support professionals to support those that they care about. And that that really forced reliance on virtual and remote opportunities. Now, some people on the autism spectrum actually became more engaged when given the opportunity for virtual programming. But there’s a lot of people with IDD or who have autism, where that was really, really difficult. And there’s a lot of individuals in which their vulnerability and compromised immunity actually made it very dangerous for them to be served by multiple service providers who were also serving others. We know that in our community in the IDD community, that people with intellectual and developmental disabilities were disproportionately impacted not just at getting COVID, but also passing away from COVID. And so there’s certainly this new push for remote support and technology. Tennessee is one of those states that’s considering themselves a technology-first state where they’re trying to figure out how we are able to give people more access to technology so that they don’t have to have someone in their home with them at all times. Now, obviously, the dependency on technology is really variant. And it really depends on the individual support needs and their preferences. But this video series that Tennessee has put together kind of shows some examples of different people, a diverse set of people with intellectual developmental disabilities, using technology as a way to access support. So we’re seeing a lot more in terms of the technology first, and seeing how people can be supported with this emerging trend of technology. I would say the other thing that has really resonated with individuals is asset development. So a lot of the time, most people with IDD live with their family. And in order to live in their own home, they have to have some sort of subsidy. And that usually is in the form of a rental subsidy, a Housing Choice Voucher, or some sort of housing voucher. And what what we are realizing is that why are we spending decades subsidizing the rent to a landlord, when maybe we should be helping people own their own home, or helping families be able to bequeath their home, or helping families be able to invest in housing for their loved one, because the reality is, there’s not enough affordable housing dollars for the neurotypical need, let alone individuals with disabilities. And that was really highlighted in one of our policy papers that’s included in that a Place in the World Report and there’s some major shortcomings in terms of affordable housing dollars going towards people with IDD. And so this idea of being able to invest in one’s housing is certainly gaining a lot of traction, especially with COVID. COVID has just kind of made mortality, very real and front and center. And I think a lot of families are starting to look at, “What really does my loved one moving out look like? How can we make that happen?” What are our options? And so there’s certainly an increased interest, trust from families who had the capacity to help their loved one purchase a home.

What about self directed services? Is that an emerging trend?

Desiree: Yeah, definitely you all in California are just kind of coming around the bend with self direction, but self direction has been around for a long time. And self-direction means that an individual is evaluated and then given a budget based on what their support needs are, and then they have the opportunity to choose who they want their staff to be. And that can also be family members. And so that is different than if an agency is given the funding to be able to support someone, and an individual is relying on the agency to hire and fire and schedule the staff. Now, self-direction is a really great option for people who want a lot of control of who is going to be supporting them day to day. But it’s also a huge commitment, because you’re responsible for setting up your staff, finding your staff, training your staff, scheduling your stuff. And that just isn’t going to work for all people. But it does offer a lot more flexibility. For those who are interested in that type of thing.

I guess this is a trend, and it’s also something you spoke about with the use of video technology. Can you talk a little bit more about how COVID impacted these trends? And in some cases it may be accelerated.

Desiree: Yeah, certainly COVID has exposed how fragile our system is in terms of reliance on DSPs. For too long, direct support professionals, the people who are helping individuals with IDD, live the lives they want to live, are underpaid. They’re not necessarily given any sort of career development. And when COVID hit, we realized, “Oh, my word, we have a huge reliance on women who are also caregivers to their own family, who when a pandemic happens, can no longer go to work, because of risk of exposure, because they have to stay home with their families.” And so it really heightened the awareness of this caregiver crisis. Luckily, right now, there’s a bill that has been introduced, called the Better Jobs Better Care Act, and it is supposed to infuse a bunch of money into the direct support workforce and waiver services.  I think another thing that’s really important and that COVID has also heightened was family’s awareness that they are not going to necessarily outlive their loved one. And I think it really kind of lit a fire under some people to think about what does this mean, and some families that we’ve interacted with with the Autism Housing Network, they had no choice but just to start thinking of, “Well, what am I going to do because my husband works at a hospital, and the exposure was a major issue.” And so one of my good friends, she actually created an accessory dwelling unit in her garage, kind of like above the garage apartment, and she was forced to figure out how they were going to keep their family safe. And so their adult child with intellectual developmental disabilities with very limited language, needs pretty moderate support, to live the life he wants to live. He had to move into his own home, and she was floored at how his life skills just grew. His autonomy, his desire to be independent, and so COVID has really brought forth and kind of pushed away some of the fears that I think holds a lot of families back from starting that transition process.

Dana: One observation that I made since we employ a number of DSPs, and COVID was tough on a lot of people, but I was just amazed at how committed and how they stepped up to the plate, when we needed them the most. And so, very, very proud of them. Also, I think that they do tend to be underpaid and underappreciated, and I’m certainly hopeful that we can in fact direct some money both professional development as well as professionalizing their career path, as well as wages in their direction.

Is that part of the infrastructure stuff going on? There seems like there’s a lot of infrastructure stuff going on.

Desiree: Yeah, there’s a ton of movement happening in the Biden administration. So yes, it is part of that push. So they are hoping to be able to secure about $400 billion, that’s a lot of money. And in California, you all have what’s called the Entitlement Act, the Lanterman Act, in which you’re supposed to be legally entitled to access home and community based services. Across the country, that protection does not exist. In most states, there are very, very long waiting lists to be able to access any sort of support. And so what this Act would do is that it would allow for the entitlement and protection to go across the nation. So it’s a pretty big deal. And it would be quite a game changer, in terms of service provision for people with developmental disabilities. And other neurodiversities really. I think another thing that was just like you said, Dana, the commitment of DSPs, to those that they support. I’m part of a network of a lot of different providers, including LSA. And I think that some of the providers who support individuals really are medically fragile. There were DSPs, who volunteer to move in to those which they support home. And I think what has happened is people have realized, “Well, having a living caregiver is a little different,  it’s not what we typically did, but it kind of worked.” And so I’m hoping that it kind of offers more opportunity for people to think about the diversity of ways in which they can access services, because for some people having a live-in caregiver would be great. They like the stability with the same person, especially going to medical appointments. It’s the same person going with them on that kind of consistency, especially for individuals on the spectrum. But at the same time, there’s others who are going to be like, “No way do I want my caregiver living with me.” Maybe they enjoy having the diversity of people coming in their life on different shifts. Or maybe those who don’t need that overnight support, they like having that privacy and not having to live with their caregiver. I think that one of the other benefits that came out of COVID, despite this being a terrible, terrible pandemic, is that it really opened up both the system’s opportunities for flexibility and diversity, as well as the consumers’ understanding of what are the possibilities of the future. It kind of forced us into it.

For emerging models, where do you see that going? I think you did talk a little bit about these planned communities. What do you see in the way of emerging models?

Desiree: Yeah, I think that it’s kind of part of the evolution of residential options, is the emergence of these planned communities. So housing designed for people with intellectual and developmental disabilities, cognitively accessible, and not just in the apartment version, but also in the single family home version. There’s a group out in Indiana called CASS housing. And what they’ve done is they create almost like accessory dwelling units or duplexes where the individuals with IDD live in their own little studio apartment and their accessory dwelling unit. But also right next to them is a paid neighbor. So a neighbor that knows who they are, that’s kind of that extra hand when transportation doesn’t fall through or the DSP doesn’t show up. It’s really a paid support person who’s just next door, not necessarily living in someone’s home, but really close on that intentional relationship. The other thing that I think is that we are realizing that there is a need, certainly for memory care opportunities. So individuals with down syndrome and other intellectual developmental disabilities are experiencing early onset Dementia and Alzheimer’s. They’re living much longer than in the past, and it is unfair for us to just take them out of their community and their home and put them into a nursing facility that maybe focuses on memory care, but doesn’t understand the needs of someone with an intellectual and developmental disability. And so we’re starting to see a lot more talk on how we are going to start supporting the aging population of people with intellectual and developmental disability. But that is really, really important. And I would say the third kind of trend that’s happening is service providers and residential service providers and housing communities are starting to realize that the typical job in the world isn’t always accessible to people. And there needs to be a step up into competitive integrated employment. And so there’s a lot of social enterprises that are being developed alongside housing. So coffee shops, thrift stores, container gardening, and just different types of social enterprises, that really are catering to make sure that people with intellectual and developmental disabilities are getting that work experience.  It’s something they can put on a resume where they can make mistakes, and not automatically be fired, where you can pull back that support in a very safe environment that’s going to want you to be successful in your job. We’re seeing a lot more social enterprises being developed to give people more opportunities for employment.

What can the people in the audience do to help the Autism Housing Network?

Desiree: Oh, I’m so glad you asked, Dana. So we started the network, the website that’s available now, in 2016. It’s been a long time, and we have changed and morphed and grown. And the network needs to be revamped, it needs a facelift. So we are asking people to take a survey. Go on the Autism Housing Network, check it out, click around, but then take a survey. We want to know what practical tools that we can create that are going to help you on your journey. Were you able to find the information you needed quickly? Or do we need to make some major changes in terms of how you get your questions answered? So we’d really appreciate it. If you would go to the Autism Housing Network, peek around a little bit, spend some time on it, and then give us critical feedback. We’ve already had almost 200 people who have given us feedback on the website, we are reading through every single survey response. So your voice does matter, your opinion matters, and it is certainly going to direct how we change the Autism Housing Network for the future. So I would really appreciate it if you would do that.

Can I have someone live with me to support me?

Desiree: Yes, depending on what state you live in, will change how you get the funding to pay for that person. So in some states, they will pay a daily reimbursement. In other states, you might use self direction to pay for that person. In some states, if you have identified a friend that you would like to move in with, maybe you both have some personal care hours that you can combine to hire someone to come and live with you. The other option is, for those who aren’t on a waiver, if you can provide some very clear boundaries, but maybe your roommate doesn’t necessarily get paid by Medicaid, you can pay privately, maybe you doc rent, so that person lives there rent free, if they’re able to commit this many hours a week to support an individual who also they share their home with. So there’s different ways in which you can have someone to support you and live with you. It’s really figuring out how you’re going to pay that person to make it happen. And every state kind of has their own ways in which that can be done.

Is there help out there to help us buy a home?

Desiree: So in some states, they will have either special disability programs, where they can offer down payment assistance, where they offer some other financial tools to be able to get financing for housing. There are some states for if the home is an accessory dwelling or a smaller home, but they’re offering some unique lending tools to be able to do that. So typically what you would Google is your state name, and then “Housing and Finance Authority.” And you can look at every state that has their own Housing and Finance Authority, or agency, and that will have a listing of all the different tools that are available for their state residents. So again, if you live in Alabama, then you’re just going to put in the Alabama Housing and Finance Authority or Housing and Finance Agency, and you should be able to get to that entity that offers those types of home buying assistance.

Dana: I wish I could add more. This is an area that I think we fall into. There isn’t enough help out there. So I think Desiree’s advice is good. I hope that if people find good avenues out there, they’ll share with others because I think this is an area that people often fall short in finding out.

What are some ways we can make an intentional community attractive to neurotypical individuals?

Desiree: First of all, intentional communities are not really a disability thing. There’s actually a fellowship for intentional communities, you can get to the website, IC.org, it’s really a lifestyle. And if I was approached, if there was an intentional community, or neurodiverse intentional community being created in my community, or when I was younger in college, I would have jumped at the opportunity. I think one of the benefits of a lot of the awareness that has happened over the years is that each generation that goes by is becoming more and more aware, and maybe just unfazed and value neurodiversity a little bit more than some of the older generations. I’m not sure that you have to necessarily convince, or it’s going to be hard to find neurotypicals to live in an intentional community that you want to create, I think it’s more about it your community that you’re creating, it shouldn’t just be that you’re creating a housing community for people with disabilities. There has to be something else within the vision, and other values that people share. And that is what is attractive to people. So maybe it’s that pedestrian orientation and wanting to have lots of amenities that other community members can have. So there’s a pool or a community garden, a common house, common meals, those types of things. So I think that if you can get in the right circles, there actually are a lot of people who value neurodiverse relationships, and would jump at the chance to live alongside as good neighbors, to individuals with intellectual developmental disabilities.

Can families that have an adult child who is not receiving financial services (SARC) here in California qualify for any of these housing options? And if not, how would they start the process?

Dana: I think that unfortunately the big issue is if you don’t qualify, and Desiree talked a little bit about people on the margins, particularly on the high functioning side where they don’t qualify under the entitlement act in California. Frankly, it throws them into a bucket where there aren’t a lot of supports for them.  I think this is an area that is challenging because individuals often fall into that category and do need support, and there isn’t the same level of support. Maybe the direction that the infrastructure acts are going, will broaden that a little bit. Because the California act is somewhat narrow in terms of who’s entitled to services.

Desiree: Just adding on to that, I think that’s also one of the values of planned communities that have supportive amenities, because those supportive amenities are not Medicaid funded most of the time. And so an individual who maybe doesn’t qualify for long term support services through Medicaid, if they’re able to access a meal plan, or they’re able to access the life skill classes about relationships, money management, or planned activities, or have someone that’s on site that can answer questions. A lot of the planned communities that I’ve worked with that are affordable housing developments as well. There are a lot of people who are not on a waiver, that live there because there’s enough support, and that individual doesn’t necessarily need someone to be with them 24/7. They just need a little bit of support, or someone to identify if they’re having challenges and be able to help them create solutions. And so I think that another really high value for these planned communities that are becoming more and more available is that for those who cannot access a waiver, it gives them a greater opportunity to potentially move out of their family home and not necessarily need the waiver.

Dana: I’ve observed one issue with some plan communities is there’s a high buy in, so it’s not for everyone. That high buy in and monthly expense is often not funded by available services, and acts as a barrier. And so, I think we would all like to see more options for  how people could receive a scholarship to give one access because he or she cannot afford it on his or her own. There aren’t government programs that are geared up. A lot of those intentional providers get started, and then they work with California Regional Centers to try and see if they can get new services structured and funded in a way. And then at ease a problem, but it is a challenge.

Desiree: But again, if the individual has lower support needs, if it’s an affordable housing development, so in the world of affordable housing, there’s something called permanent supportive housing. So people who experience chronic homelessness, mental health challenges, this thing called permanent supportive housing has been around for a long time, but it just has not been accessible to individuals with IDD. And so in a way, it’s almost as if we need the affordable housing industry to recognize how including these supportive amenities, can help people who can’t access the waiver live more independently. When I say can’t access I mean that they’re never going to be eligible because they have such low support needs.

It’s so frustrating that families are essentially penalized for when our loved ones stay in the family home? Like you said, there isn’t enough affordable housing out there, especially in this geographical area. Yet, our loved ones receive less money, if they stay at home. Could you please expand on what you mentioned are pushes for changing this?

Desiree: Man, and that question is extremely state dependent. So in some states, individuals who do live in their family home do have very large budgets, so I would say it’s very state dependent in terms of the budget that somebody can access for services. In terms of accessing the housing side, because remember, housing and services are not always connected. There’s the consumer controlled model, and there’s the provider controlled model. And I think it’s important to remember that your state has an enormous amount of flexibility in terms of what they can offer people, whether they live in their family home, or they live outside of their family home, which is why advocacy is so important. So whenever you get those annoying emails, that’s like, “Call your senator,”  really actually do it. Because advocacy does change things. And it is absolutely important. So again, if you haven’t called, especially if you’re in Washington, Washington, West Virginia, Colorado, Montana, Georgia, Louisiana; these are states in which their representatives have not yet signed on to the Better Care and Better Jobs Act. Please call your representatives and tell them that we need services, the waitlist needs to disappear. Everyone needs to be able to access services in the home and in the community that they want to live in.

Any thoughts about having senior homes/communities allowing adult disabled children to live with the same communities as their aging parents?

Dana: I guess there’s pros and cons, I would hope there’s nothing that would prevent that. If I move into a senior home, they will also allow my soon to become senior adult child the opportunity as well. I think on the other hand, maybe that’s not the right place for my child, living in that kind of setting. I don’t really know if there are barriers there, but I would be interested to find out what they are. And maybe it comes back to funding and the flexibility of the system for the individual who would live in that environment to continue to be able to have access to those funds that they had, when they were living in the family home, or in some other setting. Maybe self direction would be something that would help in a case like that.

Desiree: If you want an example of a senior affordable housing community that intentionally includes individuals on the autism spectrum, you can look up 29 Palms in Phoenix, Arizona. The foundation for senior living in Phoenix, Arizona has recognized that by integrating individuals on the autism spectrum with their senior affordable housing opportunities, has really enhanced the lives of both individuals. You have a built-in system of grandparents, and you have grandparents who feel invigorated by these young people coming to them and asking them questions about dating and job issues, and so that is actually starting to happen.

I know perspectives, even in government can change as they already sort of did for intentional communities, and how SSI is handled in relation to those.

Desiree: There’s definitely a little bit of stigma in terms of whenever more than a few people with disabilities live in the same community. That stigma certainly existed, we had a major challenge in 2014 with regulations that did stigmatize that type of housing choice. CMS has since then said that we need to be thinking about people’s choice, and we need to be thinking about outcomes. And that was not right for us to include that type of parameter and stigma towards the different settings. So yes, that certainly has changed in terms of regulations. And I’m not quite sure what the challenges are with SSI, I think you might be thinking about Medicaid. SSI and SSDI are the cash reimbursements that are directed to the individual federal program, and there was never really an issue with how you use those as long as you’re using them for ways in which you need to be using them.

In starting to look for a community for a loved one, what would be the first essential contact email sites?

Desiree: I think it is very important for you to understand the options. And to the extent possible,  for your loved one to understand the options too. The Autism Housing Network does have a little education button that has some first couple steps for how to explore housing. We also just released a blog during COVID about some of the practical ways in which you can start planning for that transition. And then we also just recorded a bunch of videos. Because of COVID, we had to do one of our market analyses virtually. And so if you go to “Inclusive Housing Denver,” we’ve pre recorded a few videos that talk about the benefits and considerations of different residential options. And so that can kind of give you a jumpstart in terms of a video on what are some of the pros and cons that you should be thinking of when you’re thinking of residential options. And that’s available both in plain language as well as English and with Spanish translation.

Dana: I’ll also add that I’ve recorded several podcasts, such as the LOMAH podcast (episode 15 & 16) on the residential care model that we use an LSA and the considerations for it. So you can become more educated on that option of one of many options.

Well, thank you so much, Desiree. It’s really a pleasure getting to interview you.

Desiree: Oh, I love chatting about this. And we’ve worked together a lot, Dana and I have to say Life Services Alternatives is a fantastic service provider. We’re doing a lot of market analysis right now in different local communities. Because if we’re going to be pushing for more housing and more options, we better do what people want. And so, one of the things that the Autism Housing Network has started to do is a lot more of these market analysis all across the country. And so one of the things that we ask is, what are people’s fears? What are the barriers to community? And one of the number one fears that we keep hearing is that people are afraid they’re not going to find a good service provider. It’s one of the top three fears that people have. And so for those of you who aren’t part of the LSA family, LSA is a fantastic service provider, and really a shining star in terms of what service providers are out there, so don’t be afraid. There are really great service providers in the community. And if there aren’t we have to make some changes.

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