This article is part of the Under the Lens series
Not Just Ramps—Disability and Housing Justice
Shelterforce hosted, “Getting to More Accessible, Affordable, Inclusive Housing,” in February, a webinar that explored why affordable housing development processes should become more disability-forward, and how organizations could integrate this lens into their housing initiatives.
The discussion was moderated by Miriam Axel-Lute, Shelterforce’s CEO and editor-in-chief, and featured:
- Anita Cameron, director of minority outreach for Not Dead Yet. Cameron is a longtime disability activist who has been an integral part of the disabilities activist group, ADAPT, protesting for various disabilities rights issues from advocating for wheelchair lifts on buses to pushing to expand home health care.
- Chelsea Hayman, director of housing policy and programs for Maryland’s Department of Disabilities. Hayman’s areas of specialization include permanent supportive housing, accessibility modifications, aging in place, single family housing rehabilitation programs, and fair housing issues for persons with disabilities.
- Hunter Herrera-McFarland, policy associate for The Kelsey, an organization that creates and works on disability-forward housing solutions. Herrera-McFarland has over 10 years of experience organizing local and state governments. She has multiple invisible disabilities and a service dog named Diya.
- Shelly Richardson, executive director of the Statewide Independent Living Council of Illinois. Richardson works with 22 Centers for Independent Living and other agencies across the state to provide the leadership, research, planning, and education required to support independent living services for people with disabilities across Illinois.
Note: This transcript has been lightly edited for clarity.
Miriam Axel-Lute: Last year, we published Not Just Ramps: Disability and Housing Justice, one of our Under the Lens series, where we take a particular topic and dive deep into it. It was something that we’d been hearing from our readers that we wanted to get into more, and [we] also knew that many of our readers weren’t as connected in with the disability and justice community as perhaps they might need to be or want to be.
We’re following up now with a webinar conversation with several people who participated in that series in different ways, about how we can get to a place where there’s better affordable housing and accessible housing for all.
We’re going to start with some context setting: What is the state of affordable accessible housing today?
We’re going to start with Shelly Richardson. Shelly, can you start us off talking a little bit about how affordability and accessibility interact with each other?
Shelly Richardson: I’m the executive director of the Statewide Rehabilitation Council of Illinois. My pronouns are she/her. I’m coming to you from Springfield, Illinois. Before I came to the executive director position here, I worked for a Center for Independent Living in Alton, Illinois, that’s the St. Louis metropolitan area.
I transitioned people out of nursing homes or institutions into community living. The greatest barrier to transferring these people out of nursing homes was finding affordable housing. I had personal experience with affordable housing; I was able to utilize what was then called a Section 8 voucher while I was getting my education and raising, as a single parent, my twin daughters. I knew how important that type of housing was.
The problem that we had is [that] there are many builders that are building for what they consider low-income people, but the people that I worked with were usually only on SSI income. Starting January 2024, this year, the maximum monthly income for those that are on SSI [is] $943 a month.
Now, as you can imagine, these people coming out of nursing facilities with only $943 a month to cover everything, they need what’s called extremely low-income housing—[for] people that make below 30 percent of the average median income. Those units are very hard to find because there’s not enough builders out there that are building those units, so it’s a real big need. Then when you try to find accessible units, then that just narrows that very, very much smaller.
I want to give you some statistics for the state of Illinois. The statistic I’m referencing comes from the National Low-Income Housing Coalition. Right now, in Illinois, we have 443,746 renter households that are extremely low-income. That doesn’t count the people that are on the streets right now.
That means there’s also a lot of people that are paying more than they should for their rent, and they’re forgoing necessities because they’re just trying to keep a roof over their head. According to that number, we have a deficit in the state of Illinois of 293,354 units for extremely low-income people. That’s the biggest hurdle that I face. That’s where I see the need is.
Tell us very briefly about the challenge that some people face with having their services and their housing reliant on each other.
Richardson: People need to live in areas where a personal assistant can get to them, to come in and help them with their activities of daily living. If they’re not close to transportation—sometimes personal assistants take that type of transportation to get there, and so it limits where they can live. Also, if they’re in a rural area that doesn’t have food and they can’t get food delivery, or they can’t get out, and they’re in a food desert, that’s unacceptable.
They need to be near medical care. I have nightmare stories … about people not being able to access transportation in rural areas just to get to their medical appointments. Oftentimes, if a person is placed in an extremely low-income unit in an area that they can’t get their critical supports, they end up being reinstitutionalized all over again just so that they can get their needs met. We don’t want to see that happen. We know that people thrive when they’re living within their own community among their loved ones with their services and paying back into their local economy.
Thank you. Anita, can you tell us about some of the effects on disabled people who cannot get housing that is accessible to them and how it affects different groups differently?
Anita Cameron: I am director of minority outreach for Not Dead Yet. It’s a national disability organization that fights assisted suicide. The effects on people who can’t get housing . . . can be horrific, to say the least. Other than living on the streets and being vulnerable to injury or illness and the possibility of winding up in an institution, often it’s been my experience that people with disabilities, especially [those] who can’t find housing, it leads to depression. It leads, obviously, to anxiety. It leads to feelings of worthlessness.
When you’re marginalized, [experience] racism, or you are someone who is disabled, and you have a felony conviction, as soon as you can’t get housing that can lead to you being forced to do the things that you did [before] to survive, leading once again to re-incarceration.
I am in Rochester, New York, 85 miles from the Canadian border, and so we see often what happens in Canada to people with disabilities, and their system is horrific. Canada has assisted suicide, and euthanasia, what they call medical aid in dying. What we found in Canada is that disabled people—and there are a number of high-profile cases—who cannot find safe, affordable, accessible housing are now choosing to die via assisted suicide, and it is happening quite often. People with disabilities who can’t afford the costs of being disabled, who can’t get medical treatment for their disabilities, are choosing to die.
Then look at the situation here in the United States, [which] also leads to feelings of despair so terrible that you choose to take your own life, that you choose to die by suicide because you are not safe. There is no safe housing. There is no affordable, accessible housing.
Often, people who can’t find that wind up institutionalized back in a nursing home. Often, the only reason that people are stuck in nursing homes is because of the lack of housing, and sometimes people who’ve been in housing but then lose access to it or whatnot, wind up back institutionalized.
Hunter, The Kelsey, where you work, talks frequently about housing that is affordable, accessible, and inclusive. Talk about why the inclusive part is necessary to specify in there.
Hunter Herrera-McFarland: I work at The Kelsey, and we are a national housing developer of affordable, accessible, and inclusive housing, but we also change policies at the local, state, and federal level to make what we call disability-forward housing the norm across the country. I’m a multiply disabled individual.
We all know in this room that the past deeply informs the present, so the affordable housing crisis is a direct result of racist, ableist housing policies, and practices that redline segregated communities of color, and then also deny people with disabilities the fundamental right of community living, placing us in institutions, hospitals, congregate settings, which we all know are the least inclusive settings possible. Even though people with disabilities have had the legal right to community living for almost 25 years under the Olmstead Supreme Court ruling, people are still not able to move into these communities and housing of their choice because the supply just does not exist.
My fellow panelists covered this point really well, but I’ll add a couple of statistics. We know that there are still roughly 1.2 million adults living in nursing homes, which includes people under the age of 65 that live in nursing homes just because it’s the only affordable or accessible place for them. There’s more than 360,000 people in psychiatric facilities and more than 260,000 people with intellectual and developmental disabilities who live in congregate or institutional settings, or they’re just simply on wait lists for services and residential programs. They live with their family members instead.
Only about 12 percent of people with intellectual and developmental disabilities own or rent their own homes. This is a very low percentage and it definitely doesn’t reflect what people want, which is to own or rent their own home and live independently. In survey after survey, when older adults and people with disabilities are asked where they would prefer to live, they say they want to live in their communities and not in these institutions. We saw, during COVID, that these institutions are not safe either for a lot of people, but especially people who have compromised immune systems, or chronic illnesses.
Countless studies have shown that people are also happier and healthier when they live in community settings and have independence to make everyday choices that a lot of people take for granted, like choosing what they want to eat for lunch that day, or choosing what hobbies they want to engage in, or even having people over to visit them. They usually have to go through a lot of bureaucratic processes just to have those basic things that we have every day already. Community-based housing is not only good for people, but it’s also more cost-effective compared to when people are relegated to live in institutional settings.
[Related story: Developing Housing that Welcomes People with Developmental Disabilities]
I don’t have the exact numbers in front of me right now, but congregate-setting institutions are far more expensive than paying for a live-in aide, for example. Inclusion, to me, is really not just about living in the community of my choosing, but also making sure that I’m able to thrive there. I want my cultural background and personal experiences to be valued and really define support from my neighbors, and that is really the kind of community we strive for at The Kelsey.
At The Kelsey, it’s not just about integration, it’s about inclusion, so making sure that you feel like you’re a valued member in your communities and in the buildings that you choose to call home.
Chelsea, I want to turn to you. Our series was called “Not Just Ramps,” trying to give a nod to the fact that different folks need different kinds of accessibility accommodations. How much is or isn’t that recognized when we discuss affordable housing?
Chelsea Hayman: I work for the state of Maryland. I was formerly with the Department of Disabilities as their housing policy and programs director. I’m now with the Department of Housing and Community Development, serving as their senior federal compliance analyst.
In my role with the Department of Disabilities, I did extensive housing policy analysis, but our agency also administers the HUD Section 811 Project Rental Assistance Program and other housing programs for the state that are specifically intended to benefit people with disabilities coming out of institutional settings. As we all know, disability is broad. Disability looks different for different people, and therefore accommodations are very different for different people as well. The biggest tool that states have in order to indicate priorities around how they handle accessibility being built into housing is going to come through [each] state’s qualified allocation plan for low-income housing tax credits.
That guide is often used as a policy tool in order to indicate what types of developments the state would like to fund in order to create integrated and sustainable communities. Disability is covered within that document. Typically, that is an opportunity for advocates and also other state entities to weigh in and say, “We have specific priorities that we want to see showing up in this plan.”
One of the things that came out of our last iteration of the Qualified Allocation Plan in Maryland is an actual definition of what universal design means. Instead of universal design conceptually being mentioned in the plan, the specifics—where the outlets should be placed, what types of door handles should be used, things like that—are now detailed in that document. The consequence of leaving that technical information out is that you’re not going to be able to capture the broad aspect of making sure that a modification is made to a unit, perhaps even before somebody moves into the unit.
Changes in program policies and procedures [are] going to look very broad depending on the person. There are situations where we had residents in our 811 program who had limitations [as] to scent and smell, where environmental pollutants were going to trigger that individual. Therefore, they would need to request an accommodation, and we had a policy in place where they were able to do that through our tenant selection plan.
All of the 811 programs have to have an accommodations policy, and those accommodations are reviewed on a case-by-case basis. Without having a plan like that in place, it does a disservice to the individual because their needs are not truly being met by the housing that they’re living in. It is very important to have very clear policies and procedures to ensure that we’re providing the highest quality integrated housing that we’re able to provide.
Let’s talk about what developers who want to do better on accessibility should keep in mind. A lot of developers of affordable housing out there might want to do better about this but don’t necessarily know where to start or are afraid that it’s too expensive. We’re going to turn to you, Hunter, to give us a an overview of how you approach designing a disability-forward building from the technical side.
Herrera-McFarland: We know, at The Kelsey, that code compliance is critically important to developers. But they also need to go beyond code compliance, because a lot of these codes are outdated. For example, the uniform federal accessibility standards, which a lot of buildings have to follow if they get federal funding, hasn’t been updated since the ’80s. There’s a lot of new innovations, a lot of new learnings through the design that really need to be considered.
That’s why The Kelsey created the inclusive design standards which we define as for cross-disability access, meaning designed for all types of disabilities. Not just physical and sensory disabilities, but also cognitive disabilities. We did this in partnership with architectural firms and also created the Inclusive Design Council to really help us figure out how to do this correctly. Then also community engagement as well around this to see what people were really looking for in their buildings to feel at home. Not just for physical access, but for other types of access.
Our inclusive design standards include over 300 different elements and they reflect design choices, building features, [and] development strategies, making sure that you’re engaged in community development or community engagement during the pre-development phase. Then operational policies as well that support accessibility and inclusion. These are really innovations in architecture and planning that take into account a much broader spectrum of human experience.
There are six impact areas that are included, and these are based on what different people with different disabilities would need to thrive in their home. Mobility and height for physical access needs. Hearing and acoustic for sensory access needs. Vision for people who are blind or low vision. Health and wellness, which everyone in the building will benefit from, but especially people with chronic illnesses, so we make sure that the design or the building elements that we use have the highest grade for environmental impact. This also helps people who have chemical sensitivities.
Then cognitive access for people with intellectual or developmental disabilities. These also help other people like young children. An example that I’ll add is sensory gardens, which add beauty as well as utility to buildings. Then there’s also wayfinding, which will benefit young children who need to find their unit. We also make it easier for people sensitive to a lot of noises. By exceeding requirements for sound transmission class, you’ll create a better home for people overall. It has the added benefit of less confrontation about noise between neighbors.
[Related article: Cross Disability Design Makes Housing Better for Everyone]
The final impact area is support needs, which, at The Kelsey, we think is critically important and is largely left out of a lot of developments. It’s really for everyone who needs assistance to live independently. We need to dismantle the myth that only some people with disabilities can live in the community because we know that all people can live in the community, ranging from people who need 2 hours a week of support to 24 hours a day of support. We just need to create the right systems and practices to make this possible.
One concern that developers have is that increased accessibility is too expensive, but we have two developments under construction, one in San Francisco and one in San Jose, one of the most expensive markets to build in in the country. When comparing the cost of our projects to citywide average costs for affordable, low-income housing, tax credit-funded homes, the projects are cost competitive. Our [development] in San Jose is going to cost 2 percent below average, and the one in Civic Center in San Francisco will be 14 percent less than the average.
While we haven’t built projects in other parts of the country yet, we have done some high-level cost analysis between states that have increased accessibility requirements in their LIHTC programs and those that don’t, and it’s really cost-neutral. There’s barely any difference at all. If you build with accessibility in mind at the very beginning, it’s not more expensive. What is expensive is not considering accessibility and having to make expensive modifications in your home.
At The Kelsey, all of our units are designed to be adaptable or accessible, meaning, if somebody with a disability is visiting your home, you can take away, very easily, with a screwdriver, the under space in the counter so they can use the counter. We think that it’s really important not just to design for people who currently live in the home, but also people who would like to come visit you. The term that the industry uses is visitability.
Modifications such as rolling showers are expensive after project completion and then are tricky to add later because they can lead to potential problems like water damage. It’s critically important that developers consider this from the beginning, and they can use The Kelsey’s design standards to do so. San Jose and the District of Columbia, for example, incentivize using our design standards for LIHTC-funded properties. The Kelsey has a self-scoring sheet that can really help you do this independently, but we can also work directly with you through our technical assistance to make this possible.
Thanks, Hunter. That’s great. I just want to re-emphasize that point about cost because it is the thing that I think everybody is worried about. Shelly, we were going to talk about transportation here, which you started on earlier, do you want to say anything more about the transportation connection?
Richardson: I was thinking back to one of the cases, one of the consumers I was working with, to move [them] out of the nursing home into the community. I was registered on the 811 system, so I could go in and look at what units were available, but was friends with the lady that was, at the time, overseeing that list. She would call me from time to time when she had an opening, and she said, “I have an opening in this unit, and it’s for extremely low income, and we’re having a hard time filling it, do you have anybody that could go there?”
When we got to the town and we saw where the unit was, there was no transportation coming to it. There was no supermarket close to it. It was in a very rural community. I called back and I said, “I can’t use this unit, because there’s no way that my consumer can get the supports that they need.” I have been saying for so many years, I’ve been beating the drum over and over, that I would love to see a partnership between the Department of Transportation and the housing industry so that there is some way that they work togetherthat there are incentives added to the [other] incentives to build near transportation or to bring transportation to the more rural areas.
As a personal experience, I will tell you that when I get in a place that is accessible to me, since I don’t drive, I don’t move. I don’t move unless I have to because that component is so important to me.
I had [once] moved to an apartment complex that was right on the bus route that would get me to work every day. I was unpacking and I had all these boxes around me, and trying to get the furniture set up, and my mom come in the front door with the paper. She goes, “Read this.” It was an article that said that there were going to be several 100 housing vouchers cut for the program. One of the programs was going to be the program that I was at.
I had to fight for the voucher to remain and that became a national case because I called my legislators and things like that and the AP network picked it up. We were able to save some funding for that program. Then the paper said that they were cutting transportation, the route that was right to that apartment building. I sat down in the middle of bedroom floor and started crying. Because I need this transportation to get to where I’m going.
I started fighting and rallying other people, and we fought and we fought and we kept the bus stop.
[Then] my office moved and I had to take Uber every day. It was costing me a fortune, and I looked and looked, it was like finding a needle in a haystack, and finally, something opened up a block from my office. Do you think I’m going to move from this little house that I’m living in? No.
Making these units available to those of us with disabilities and accessibility to transportation and groceries and things we need is vital. I think that we sometimes get a bad rap. “Well, I think they probably won’t live there very long and they want to move.” No, it’s too hard for me to find a place. When I get somewhere that is accessible for me, I’m not going anywhere.
Absolutely. I also want to talk about things that are not about the physical building or necessarily the physical environment at all that affect accessibility, such as how one manages, or distributes, or connects people to affordable housing, or communicates with folks when you’re managing or developing affordable housing. We’re going to go back to you, Hunter, and talk about what The Kelsey does differently in your buildings beyond the physical design, such as with your leases.
Herrera-McFarland: Thank you. We just launched, last year, our plain language leasing initiative. We found through some studies that many tenants with or without disabilities really face a lot of barriers to securing and maintaining housing due to just the lack of understanding of these really complex legal documents. They’re not only used in lease-up processes but in income certification. This is an ongoing problem that isn’t just within the very beginning of securing housing, but you usually have to do it yearly.
This complex language can be really cumbersome for residents who have intellectual or developmental disabilities and are intimidated to raise literacy, disability accommodations, or quality of living issues with [their] landlords.
[Related Article: Is Everything in Your Lease Legal? Quite Possibly Not]
We’ve been talking a lot about Section 811 in here. It’s such a critically important program, but we found that the lease that it uses is approved by the Department of Housing and Urban Development and is written at a graduate school level. And plain language for all audiences, geared towards audiences with cognitive disabilities, typically sits at the fifth or sixth grade reading level. Plain language is writing designed to ensure the reader understands documents as quickly, easily, and completely as possible.
The Kelsey put together a diverse team of professionals to collaborate on translating and simplifying six commonly used affordable housing documents for practical use. We’ve only done so in California, but we want to do it in a lot of other places. Then also, landlords can use these documents in their state as long as they review them with a lawyer to make sure that they have all the state-level requirements that are necessary.
Then something that we’re also really proud of is how we achieve our goal of inclusivity through our Inclusion Concierge program. This is really to make sure that housing and services are decoupled so that people with disabilities can make and choose the housing supports and services that they want. It also ensures that people with support needs can maintain those housing services. The Inclusive Concierge program coordinates between property management, maintenance staff, natural supports, and the partner agencies’ formal supports.
We also make sure that our Inclusion Concierge works on social connectedness, they engage in thoughtful planning of what we call inclusion hours that are fully accessible, and really engage each resident to connect and experience the value and joy of living in community. The Inclusion Concierge team receives disability inclusive training, as well as training on service delivery, trauma-informed care. They really help to translate the principles of the resident experience through established pathways, including monthly check-ins with residents.
They also review the leasing agreements for inclusive language with the individuals and coordinate with community partners to identify and form circles of support, as well as just basic things like making sure that people know where the grocery stores are, know where the nearest hospital is, things like that. Then we also have at the property in San Francisco, the very first of its kind, a city-funded Disability Cultural Community Center.
It’s run by community partners in the area, and it will host events for the greater community to enjoy, then also offer resources to create a better resident experience, which will definitely lead to decreased unit turnover and improve health outcomes for everybody. Those are just a few of the things that we provide at The Kelsey, but we think are the most important, and that could easily be modeled in every other community building.
Chelsea, one of your jobs in Maryland has been keeping an eye out for problematic legislation, things where disability was not taken into account when laws were written. Can you give us a couple of examples of the kind of things that come up, and what better options you’ve suggested?
Hayman: Absolutely. The main objective is to take a look at how could this piece of legislation have an effect on the state’s ability to effectively implement Olmstead and the community integration mandate?
As an example, one of the pieces of legislation that came across my desk this past session would have allowed changes to the wiretapping law, where someone could be able to record or use some recorded device in order to catch a landlord potentially being discriminatory against a person who has a disability over the phone.
Normally that transaction, because of how the way the wiretapping laws are written in our state, is not allowed; you can’t record someone without that consent first. But this would allow for fair housing testers who need to use a recorded device in order to capture or to get information to be able to catch that discrimination as it’s occurring.
Additionally, there are different incentives that could be proposed by legislators to build housing that is not integrated. Housing that is primarily one population instead of housing integrated for a person with a disability.
Our agency does not subscribe to housing that is solely for one disability type. Because the Olmstead Act is a key part of our agency’s mission, [we watch out for] any incentives that would provide affordable housing developers the opportunity to build in excess of 50 percent disability units. Sometimes it’s not necessarily bad intentions. It’s not realizing, it’s not being linked into the communit,y and not realizing that this is not helpful for this community.
It’s catching little things like that. It does really require you to comb through very carefully and look and see what’s out there and the undue impact that it could create.
One of the ways to catch unintended consequences is to make sure that you have the people who will be affected at the table. I’d like Anita to talk about being inclusive in the planning and designing process.
Cameron: You definitely have to be really inclusive, and I don’t understand why it doesn’t occur to folks to talk to people with disabilities. You talk directly to us. If you’re forming committees, commissions, things of that nature, have us on it. Come to us. Don’t wait for us to come to you, because often in our community, many of us feel that you’re not going to listen to us anyway. Why even bother? If we try to tell you something, you won’t listen, won’t really hear us.
Instead of waiting for us to come to you, come to us, find us at our Centers for Independent Living. Find us at our local disability organizations. Find us at our disability organizations that don’t have to do with medical or medical things. Find us at the places that we have fun; find us and get our input into your projects, and get us in on the ground floor, because when you do, in the first place, you’ll save money. You’ll save money because people will tell you the most cost-effective ways to do things that are accessible and inclusive of us.
You won’t have to go and redesign a program or change policy because you’re going to have the ones of us most affected, the disability community. Look at it also from an intersectional point of view, because remember that disability isn’t always the same. Communities of color within the disability community often face racism or further marginalization. [Or] because you’re a member of the LGBTQ community.
When you get disabled people, you are very likely including other communities as well: communities of color, seniors, young people. We with disability cover everything. Come to us. Don’t be afraid to come to us and don’t approach us like we don’t know what we’re doing or what we’re saying because we do, we are the experts in our own disabilities and our own lived experience. We can tell you things where you can avoid some of the normal pitfalls.
We’re going to go one more round with our panelists to talk about how we move forward to getting more affordable, accessible housing, and especially how we leverage the Olmstead decision, which has been referenced a couple of times. [It] says that people with disabilities have the right to live in community, but they can’t do that if they don’t have housing that they can live in.
Chelsea, you mentioned earlier putting rules into the Low-Income Housing Tax Credit program about universal design and disability-forward housing. I know that you’ve done some work also with incentives in other programs as well in Maryland, especially getting accessible units into old buildings and inclusionary housing programs.
Hayman: It is really crucial, particularly depending on what state you live in—if you live in a state where there is a great concentration of urban counties or entitlement jurisdictions that receive direct funding from HUD to administer their housing programs—that you work and collaborate with those counties, particularly because those are generally the places where there is the most need and interest in housing. Particularly due to the transportation access that those counties have, the jobs, the healthcare access, amenities of that nature.
In the interest of trying to meet some of the need that we were hearing a lot from people who are on our Section 811 waitlist registry, I made some critical partnerships with county leadership, particularly at Prince George’s County, working with the county’s Department of Housing and Community Development. They had established a right of first refusal program. [That’s] a program that helps preserve naturally occurring affordable housing units, [such as] big multifamily buildings that might go up for sale.
Usually, when the building goes up for sale, we know what happens next. The rents go sky high because the private developer can come in and charge whatever they want, whatever the market allows. In creating that partnership, we were looking at ways to work together to be able to ensure that those older multifamily buildings have accessibility modifications done, because they tend to [have been] built before the ADA. Therefore, the units tend to not be accessible.
It’s really looking at little places where you can work with local administrators, determining how you can help with combining both state, federal, and local resources to create an impact. One successful program is an inclusionary zoning program that our agency set up with Howard County, Maryland, called the Disability Income Housing Units Program or DIHU. This is a specific kind of program targeting market-rate developers who are building in the county. There is a requirement that they build a certain number of units that serve individuals who are moderate- or low-income.
We added another stipulation to that where we were asking that, hey, if you want to fulfill this compliance requirement, could you also consider building units targeting people who have a disability whose income is 20 percent of the area median or less? That’s another option. If the developer wants to build [fewer] affordable units but have that benefit people at a lower income bracket, they can opt in to that as a choice and then they take referrals from our agency to fill those units.
If you have areas that you know are higher demand for people with disabilities that your organizations are supporting or working with, collaborate. I encourage you to develop the relationships, see what the resources are, and then in those conversations, that’s where you can develop new programs and figure out how to retool resources that are already there.
Hunter, you mentioned earlier that The Kelsey also does policy advocacy as well as development. [What] are some of the policies that seem to be the most effective or the most promising that you’re pushing for?
Herrera-McFarland: This is definitely my wheelhouse. I work on the policy side of the organization and so we have found a bunch of different policies at the local, state, and federal level that would really push the needle on the supply that is lacking. We talked a lot about Olmstead; a similar guideline or policy mandate to Olmstead is the Medicaid home and community-based services settings rule. Deadlines kept getting pushed back because of COVID, but a lot of states have to put together their settings rule this year and finalize it.
One of those criteria is that no more than 25 percent of units [be] reserved for people with disabilities who need supportive services. Local funding sources should align with these mandates and then that’ll also make it so state and local funding sources can be paired with federal sources of funding like HUD Section 811 to really get that deep level of affordability in developments.
Chelsea talked about the qualified allocation plan and this is something that we are heavily focused on this year. … LIHTC, the Low-Income Housing Tax Credit —that Shelterforce has done a lot of spotlights on the program—is really the primary driver of affordable housing in the country.
But if it’s not paired with other sources of federal funding—given that it’s considered a state funding source, even though it comes from the Internal Revenue Service—then they don’t have to have any in-unit accessibility requirements. They don’t have to follow Section 504 or the Uniform Federal Accessibility Standards. It’s really important at the state level that advocates, policymakers really analyze their qualified allocation plan, which is how states determine what developments get these tax credits, and see what requirements or incentives are included already.
The Kelsey has already done a little bit of this analysis, but we’ve found that most states do not have any individual requirements in their QAPs for accessibility standards. I really think it’s an untapped area of advocacy. Each year, states release their draft of this plan for public comments and many housing finance agencies hold workshops or public hearings or you can email them recommendations for these QAPs and most of the comments that they receive are from large legally savvy housing developers and architectural firms. These companies are usually more interested in adjusting rules in a self-serving way to ensure that their projects get rewarded the tax credits.
They really need more comments from disabled advocates and allies to tell them that they need to focus more on resident experience, the living environment, accessible design, and just to ensure that people with disabilities and older adults can live and thrive in the communities of their choosing. I think this is an excellent way to ensure that we get to the disability-forward housing future that we need. We need both requirements and incentives. Developers are really driven by these incentives and given that this process is so competitive, they’ll do anything they can to get the extra point on their application.
Then also we can improve and invest in programs that we already know work but are just chronically underfunded, like Section 811, Section 202, housing choice vouchers, including mainstream vouchers, and really just aligning these all with … transit-oriented development. It’s really incentivizing that as well as investing more to strengthen Medicaid HCBS, the settings rule. Then just building new programs at the local level to ensure community living, creating new voucher programs, and then also creating a national home modification program for people who are currently left to their own accord or left to piecemeal underfunded local support to make essential changes and repairs to their homes to make sure that they’re accessible.
We have a lot of tools at our disposal. We just need more advocates and more allies with these funding sources to really help us achieve the housing future that we all deserve.
A very quick clarifying question from the chat: How often are the QAP standards revised?
Herrera-McFarland: Most states do them every year. Some states do put out a two-year plan. For example, Michigan just put out a plan that goes into 2025, but some states, like Georgia, will allow comments at any time. They have a web form that you can just at any time in the year submit comments. Other states do require it to be under a specific timeline of when they release the draft. They usually give you about a month to review the draft and then submit comments.
Shelly, can you talk about a project you worked on that was assigning some preference points to help folks coming out of institutions get priority access to certain funding?
Richardson: Yes. I want to make people aware that the local housing authorities have to do a plan. Just like a state plan. They have to do a plan on what they’re going to do to further housing in the years to come. I don’t know whether it’s done every year or whether it’s done every two years. Whenever you apply to a housing authority, they usually have a page. Are you disabled? Are you a veteran? Different things like that.
You check these boxes and at the end, they come up with a score and that shows where you’re going to be put within the waiting list. I saw there was no box to check that if you were living in an institution. The Olmstead decree has said that we are to be moving people out of institutions back into the community. My work partner and I and the center where I worked, we went to bat with the local housing authority, and we advocated and we got a preference point check box for people that were in institutions.
Immediately that moved some of the people that we were working with up on the waiting list. I know that many of the 22 centers for independent living across Illinois have done that as well, and I have come across other states that have been doing that. We encourage advocates to do that. Also, every chance you get as an advocate, when you see a chance to make public comments—and I ditto everything that Hunter just said—when you can make a public comment, please do it.
Because maybe you don’t think that your little comment counts, but it does. It does. If you think your comment doesn’t count and you don’t make it, then all they’re seeing is comments that may be not in your best interest. Make time to do that. Also, please take time to partner with other agencies and organizations because there’s more power when you’re together. Just like trying to partner with National Low Income Housing Coalition, but also within the state of Illinois I’m a board member of Housing Action Illinois.
They’re also partners with all kinds of housing agencies throughout the state of Illinois. I want to say they worked very hard and just got passed legislation about source of income that no longer could landlords discriminate against what you’re counting as your income whether it be SSI, veterans benefits, anything that goes into your income. I think it’s very important that we push for this on a federal level so that we are not discriminated against.
We’re going to pass over to Anita for a quick wrap-up so that we can get to our audience questions.
Cameron: States have to take this seriously. … Olmstead says unnecessary institutionalization is discrimination under the Americans with Disabilities Act. When you’re setting up someone to be unnecessarily institutionalized, you are in violation of Olmstead. If you have policies that discriminate against people with disabilities, or make it harder, or don’t like taking into account people with very low income.
There are people out there, remember, with disabilities who have no income. They don’t have Social Security SSI, nothing. They have nothing. They need housing too. If the states housing [authorities] and all of the other organizations and agencies out there, if they’re not making sure that they are accessible to the widest number of people with disabilities … then yes, [they] are in violation of Olmstead.
That could be dealt with, that could be taken care of. States around the country are working with disability organizations and activists with disabilities to do that, to create more housing, to create better housing, to look at different situations, [for example] if you have a felony related to drug use, in states now where marijuana is legal, you got marijuana charges, you can’t get into housing. How does that work?
I know of an individual who is stuck in a nursing home because he racked up felonies before he went to the nursing home, and now he doesn’t qualify for the housing. People may make mistakes and whatnot in their lives [but] that should not bar them from housing for the rest of their lives.
A couple questions have come up about assigning the target percentage of accessible units or units that are targeted for folks with disabilities, which may not be the same thing. How do you figure out what percentage to require for accessibility?
As Anita has said, we have people on the street. How do we balance wanting to make sure that we’re not creating segregated facilities, with creating as much housing as fast as possible that people can get into? How do you think about that when you think about targets for new buildings?
Cameron: One of the things that we often find with housing is that it’s segregated, and oftentimes affordable, accessible housing, particularly for people with very low income, you’re relegated to unsafe space. We have a need for safe housing as well. Unfortunately, that’s what ends up happening when you’re poor, especially poor and disabled, you’re often relegated to unsafe spaces, and we really need to work with developers and agencies and organizations to halt that.
Chelsea, I know you guys have worked on some of these policies where you’re looking at inclusionary things. How did that process go in terms of picking target percentages?
Hayman: Primarily, we go off of what’s set in the standard for the Olmstead Act and the 25 percent integration mandate [in the 811 program]. Someone had asked me about whether there is guidance about the number of different types of units that are built for different disability groups. Individuals who are blind or low vision or who are deaf or need different types of enhancements to a unit. There is specific guidance on the HUD website about those ratios.
Herrera-McFarland: I think one thing that I’ve seen a lot of recent news coverage around is that the supply of these luxury buildings does exist, for people who can afford more expensive, like 100 percent AMI, etc. The supply does exist. What we need to do is just make sure that those buildings have set-asides for people who are low-income and disabled. Obviously, we need new buildings, we need new supply, but making sure that there’s mixed-income as well in these larger luxury-type buildings as well would really help decrease the likelihood that people will be segregated.
Cameron: There’s an unintended consequence with that, though. I’m originally from Chicago. I had a friend who was disabled and living in one of these luxury apartments that they had set aside for folks with very low income. When she went to get assistance, food stamps, things of that nature, they looked at her address and said, “Uh-uh, you live there. You live on the Magnificent Mile, you don’t need our help.” I think when we do this, we do also have to partner with agencies and say, “Look, just be aware that we do have folks who have very low income living at these addresses. Don’t automatically exclude them for services based on the address. They may be in a situation where you’ve got a Section 8 voucher in a luxury apartment.”
That’s a super important point. We’ve talked about different kinds of disabilities and different kinds of needs, and one of them is folks with environmental sensitivities, chemical sensitivities. Hunter, you mentioned that The Kelsey is careful to try to accommodate this, but some folks are sensitive enough that they feel like they need to live in a house, not in multifamily units, so they have control over their airspace and anything that might be coming in through their door. Are any of you aware of work going on to provide independent standalone housing for folks that need that?
Hayman: I have not heard of anything. In our program, we’ve had individuals with different types of chemical sensitivities request accommodations potentially either to relocate entirely to a different building, or we’ve had circumstances where perhaps modifications could be done to the ventilation units that are associated with that specific apartment. At times, it can be accommodated, depending on the person’s needs.
It’s a little bit more difficult if they have a project-based rental assistance source, a subsidy that is tied to a specific unit versus having a voucher. Because if they have a voucher, they’re able to potentially relocate to a place that works better for them. … If they’re living in a multifamily building with project-based rental assistance, it’s a little bit more difficult to relocate that quickly.
Anyone else heard of anything on that?
Richardson: I will say that before I left Madison County, I did notice a trend more toward not buildings, but individual housing units. There were a couple of properties that I was able to utilize … to move people into these individual units with the possibility of after so many years, the person living there had the chance to purchase that unit. I did see a trend going on down there. I know that we have a development here in Springfield, Illinois, that is the individual houses that we’re working on. I would really love to see more things like that.
Thank you. ALet’s talk a little bit about policies that might address accessibility if a disability onset occurs while someone is already living somewhere. This is a question about retrofitting and I think it may relate back to that point about adaptability that Hunter made earlier.
Then also tenant rights issues that support everyone, but are particularly important for folks with disabilities. Whether that’s consistent heat and cooling or sufficient bandwidth for Wi-Fi. Are there connections being made between the tenants rights folks and the disability advocacy folks on those fronts?
Cameron: States sometimes have programs where they could go in and retrofit or make, for example, if you have a situation where you didn’t need wheelchair access, but now you do, or you need a little ramp or something like that. Some states have programs to help disabled homeowners and folks in apartment settings to modify their homes. It’s usually the states and different programs within the states. I don’t know if any of the housing authorities or anything like that have it. It’s usually separate state programs that provide that funding or that will do it for free.
Veterans Affairs also has a project that does a lot of that for veterans.
Hayman: HUD has an office of single-family home rehabilitation programs that often provide for things like ramps [and] accessibility modifications.
They’re typically done through deferred or forgivable loans. Occasionally, they may be grants depending on the income level of the individual. Typically, the funding flows through the Department of Housing and Community Development for the local jurisdiction. It could be that it comes through the state for some jurisdictions. Some others—like I mentioned previously about urban counties, larger counties that get direct HUD funding—they may administer the program.
In addition, there is also allowance for a certain amount of assistance through an environmental assessment. If you’re an individual who receives Medicaid waiver services— at least within our state, I can’t speak for other states—that is a service that for individuals who have accessibility needs and need to be evaluated by an occupational therapist in the home to get modifications done, it’s a resource.
Richardson: I would like to encourage people to contact their local Center for Independent Living because the Center for Independent Living oftentimes knows if there’s grant funds available and who’s doing what. They could be a great source of information for you.
I would encourage you to start advocating and working with your states to get more funding for that home modification program.
I want to wrap up with a question about language. There’s a lot of different language that we’re using—accessible, physically accessible, universal design, visitable. Can you share where you would use which phrases, if there’s any of those that you don’t think is useful, or what you prefer, as we talk about what we need more of going forward?
Cameron: I tend to use the term “visitable” to describe a home that has a no-step entrance, 32-inch wide doors, accessible bathroom on the first floor. Something that you could get into. Friends who may use wheelchairs can get into the house, can go to the bathroom, and whatnot.
Then universal design, some people use it almost interchangeable with visitable … but universal design to me implies that every home, every apartment, and whatnot is built to be … as close to universally accessible as possible. That they would have features that are helpful for people who are blind, people who are deaf. They’d have some environmental features. They’d have accessibility features like wheelchair accessibility, elevator accessibility, and all that. To me, universal design means everything has it, whereas visitable means your home is, you can get into it, it’s not totally accessible but you can get into it. You can at least have friends visit. That’s what it is for me.
Herrera-McFarland: The Kelsey actually has a housing and disability glossary of terms on our website. We have a bunch of resources on our website under what we call the Learn Center.
There’s a lot of technical terms that are tossed around. This glossary has both definitions of ableism, definitions of people-first versus identity-first language that we talk about in the disability rights space. Also those technical terms—inclusionary zoning, density bonus, regional housing, needs assessment—really technical stuff like that.
Thank you, everyone, to our panelists and to our audience for participating. We look forward to hearing more about how everyone is moving disability forward, housing forward. Thank you.
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