Getting Into and Maintaining Housing 

in the Private Rental Market: 

Experiences of People With 

Mental Disabilities

Study of Rental Housing 

Discrimination on the Basis 

of Mental Disabilities: 

Short Paper 2

U.S. Department of Housing and Urban Development | Office of Policy Development and Research
GETTING INTO AND MAINTAINING 

HOUSING IN THE PRIVATE RENTAL 

MARKET: EXPERIENCES OF PEOPLE 

WITH MENTAL DISABILITIES

STUDY OF RENTAL HOUSING 

DISCRIMINATION ON THE BASIS 

OF MENTAL DISABILITIES: 

SHORT PAPER 2

Prepared by

Joy Hammel

Janet Smith

Danbi Lee

University of Illinois at Chicago

Prepared for

U.S. Department of Housing and Urban Development

Office of Policy Development and Research

Submitted by

M. Davis and Company, Inc. 

August 2017
Disclaimer

The contents of this report are the views of the contractor and do not necessarily reflect the views or policies of the U.S. Department 

of Housing and Urban Development or the U.S. government.
GETTING INTO AND MAINTAINING HOUSING IN THE PRIVATE RENTAL MARKET: EXPERIENCES OF PEOPLE WITH MENTAL DISABILITIES

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 2

iii

Contents

Abstract.................................................................................. 1

Introduction and Literature Review ........................................ 2

Design and Methods............................................................... 4

Results and Findings .............................................................. 5

Participants..................................................................... 5

Findings.......................................................................... 6

Discussion and Conclusions................................................. 14

References............................................................................ 15
GETTING INTO AND MAINTAINING HOUSING IN THE PRIVATE RENTAL MARKET: EXPERIENCES OF PEOPLE WITH MENTAL DISABILITIES

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 2

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Abstract

Research shows that people with mental disability (MD), including people with psychiatric disability (PD) and people with 

intellectual or developmental disability (I/DD), face significant 

barriers to obtaining and retaining housing. Although this issue 

is of particular importance in light of the Fair Housing Act, the 

Americans with Disabilities Act, and the Olmstead Decision, 

it remains unclear exactly what these barriers are and in what 

stage(s) of the process they exist for people with MD. This 

study used a qualitative research design to capture the lived 

experiences and voices of people with PD and I/DD. Six focus 

groups (four consumer groups [n = 25] and two stakeholder 

groups [n = 15]) were conducted to understand rental housing 

search and discrimination experiences of people with MD and 

the perspective of key stakeholders who often serve as intermediaries to connect people to community housing. Findings 

point to two key areas: (1) barriers and potential discrimination 

experienced during the process of accessing rental housing, and 

(2) the supports and accommodations needed to remain in 

rental housing long term. This report summarizes these first 

hand perspectives and implications for housing discrimination 

research, practices, and policy. 
GETTING INTO AND MAINTAINING HOUSING IN THE PRIVATE RENTAL MARKET: EXPERIENCES OF PEOPLE WITH MENTAL DISABILITIES

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 2

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Introduction and Literature Review

The federal Fair Housing Act (Title VIII of the Civil Rights Act 

of 1968) as amended in 1988 prohibits discrimination on the 

basis of mental and other forms of disability in the rental, sale, 

and financing of housing, or other housing-related transactions 

(HUD, n.d.). Although the U.S. Department of Housing and 

Urban Development (HUD) has played a major role in the 

enforcement of this law, discrimination against people with 

mental disability (MD)1 within the private housing market 

continues to be a pervasive issue (Housing Discrimination Law 

Project of Vermont Legal Aid, 2012; Pratt et al., 2005). Two 

major groups affected under this umbrella of MDs are people 

with psychiatric disabilities2 (PDs) and people with intellectual 

or developmental disabilities (I/DDs). Previous studies have 

shown that discrimination occurs both covertly and overtly 

for these groups, ranging from inconsistent and differential 

treatment during the application process to the denial of requests for reasonable accommodations and modifications (Fair 

Housing Council of Suburban Philadelphia, 2009; Huss, 2005; 

Kanter, 1993; Seattle Office for Civil Rights, 2011). Further, 

discrimination occurs during all phases of the process, including finding and applying for housing and remaining in housing 

long term (Fair Housing Council of Suburban Philadelphia, 

2009; Seattle Office for Civil Rights, 2011). These experiences 

of discrimination can make it difficult for people with MDs to 

find, obtain, and retain rental housing. In addition to living 

with the challenges of an MD, these individuals often face 

additional challenges, such as living in poverty or on income 

subsidies, which further affect market rental housing searches, 

applications, and long-term housing sustainability.

Although a growing body of research surrounding housing 

discrimination for people with MDs is emerging, the voices of 

these consumers are not readily apparent within most of the 

research, and, indeed, people with MDs are often excluded 

from research. For example, people with I/DDs have long been 

excluded from data analysis and interpretation (Koenig, 2012), 

although the results of this research can have a significant 

impact on their lives. Within housing discrimination research, 

people with MDs have sometimes been involved in the data 

collection phase of testing, but they have not been as involved 

in the developmental and exploratory phases in which research 

questions are developed nor in the translation of findings back 

to the community for everyday use. It is more common for people 

with PDs to be involved in data analysis and interpretation development than their counterparts with I/DD, although this active 

involvement in housing access and discrimination has been very 

limited. This lack of involvement has led to a movement on behalf of people with PDs and I/DDs to gain more control throughout the research process (Schneider, 2012; van Draanen et al., 

2013). This movement prioritizes the need for community-based 

participatory research approaches that actively involve people 

with PDs and I/DDs in the research process, particularly in 

identifying specific sources and types of potential discrimination 

experienced within market rental housing, the resulting impact 

on obtaining and maintaining community-based housing of 

choice, and long-term ability to maintain living in that rental 

housing over time when disability and accommodation needs 

change.

Within housing discrimination research, strategies to include 

consumers with disabilities can include the use of interviews, 

focus groups, member checks, and peer facilitators/key informants. 

Interviews and focus groups can be used at the beginning of a 

study to determine issues of importance to participants, thus 

serving to shape the research process (Corrigan et al., 2003; 

Gaizauskaite, 2012; Nelson and Earls, 1986; Nelson et al., 2007; 

Patton, 2002; van Draanen et al., 2013). In other words, they 

can be used to understand the experiences that people with MDs 

have had when searching, applying for, and living in private 

market rental housing. Focus groups can also be used as a type 

of needs assessment in which a group of people with first-hand 

experiences outlines issues that need to be addressed (Krueger 

and Casey, 2009; Nelson and Earls, 1986). Further, conducting 

disability-specific focus groups, potentially co-led by a peer facilitator or key stakeholder, can serve to create a safe space for 

discussing issues and ensuring access (Nind and Vinha, 2013; 

Woodring, Foley, and Rado, 2006). Finally, member checking, 

during which researchers review developing analyses and seek 

1 Mental disability is defined as “(1) having a mental or psychological disorder or condition that limits a major life activity, including working; (2) any other mental 

or psychological disorder or condition that requires special education or related services; (3) having a record or history of a mental or psychological disorder or 

condition which is known to the employer or other entity covered by this part; or (4) being regarded or treated by the employer as having, or having had, any mental 

condition that makes achievement of a major life activity difficult” (Foster v. City of Oakland, 2009 U.S. Dist. LEXIS 70094).

2

 In this paper, we are using the term psychiatric disabilities interchangeably with mental illness.
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verification from participants with disabilities, can be used at 

various phases of the research process, such as during focus 

groups and data analysis (Mertens, 2010). Using member checks 

and key stakeholders/peer facilitators during focus groups can 

serve to involve people with MDs in data collection, analysis, 

and other aspects of the research process from which they have 

been traditionally excluded (Irvine, 2010; Mertens, 2010). This 

member checking can also improve the social validity and 

trustworthiness of the data and interpretations made.

Research shows that people with MDs face significant barriers to 

obtaining and retaining housing (Corrigan et al., 2003; Nelson 

and Earls, 1986; NCD, 2010; Nelson et al., 1998). Although 

this issue is of particular importance in light of the Olmstead 

Decision,3 it remains unclear exactly what these barriers are 

and in what stage(s) of the process they exist. More fully involving people with MDs in housing research can serve to inform 

and support the research process, thus improving its credibility 

and ensuring that the project is meaningful and useful to this 

population (van Draanen et al., 2013; Walmsley and Johnson, 

2003). This research aims to fill the gap in the literature by involving people with MDs throughout the process through the 

use of a participant-directed approach, such as Nelson and Earls 

(1986) and Nelson et al. (2007) used. This research also builds 

on the work of Nelson et al. (2007) by learning from participants 

how the specific sources and types of discrimination experienced 

are leading to barriers in obtaining and maintaining housing.

3

 In 1999, the U.S. Supreme Court ruled in Olmstead v. L.C. that unjustified segregation of people with disabilities constitutes discrimination in violation of Title II of 

the Americans with Disabilities Act.
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Design and Methods

This research effort used a qualitative research design to capture 

the lived experiences and voices of people with disabilities. 

Six focus groups (four consumer groups and two stakeholder 

groups) were conducted to understand housing discrimination 

experiences of people with MDs and the perspective of key 

stakeholders who often serve as intermediaries by helping to 

connect people with MDs to community housing. Consumer 

participants were recruited through community agencies using 

purposive and snowball sampling. Recruitment flyers and invitation letters were distributed to community agencies and MD 

organizations across two large cities, Chicago and Washington, 

DC. We invited people with PDs or I/DDs who had direct experiences with potential housing discrimination in the rental 

market and who were interested in sharing those first-hand 

experiences. In addition, key community stakeholders were 

recruited for separate focus groups based on their expertise in 

housing issues. Invited stakeholders included peer mentors 

and advocates, staff from the Center for Independent Living, 

disability organizations involved in housing searches with 

people with MDs, protection and advocacy/legal organizations 

involved in housing discrimination lawsuits, and housing policymakers and funding agencies. All participants consented to 

participate in the focus groups via approved procedures from 

the University of Illinois at Chicago Institutional Review Board.

All focus groups were conducted in person, with the exception 

of one stakeholder group that was run through teleconferencing to accommodate key stakeholders from different parts of 

the country. Focus groups used a structured guide with openended questions, strategies to elicit full and equitable participation by different participants, frequent paraphrasing and 

summarizing of emerging themes, and use of a white board 

to note themes and validate observations with participants 

(Krueger and Krueger, 2009). The length of each focus group 

ranged from 90 to 120 minutes, and each group consisted of 

four to eight participants.

Discussion topics included examples of housing discrimination 

situations personally experienced by people with MDs (PD and 

I/DD) and key points in the housing search process during 

which discrimination may occur and disability may be disclosed 

(either purposefully or inadvertently) during the housing search 

process. Housing stakeholders were also asked to comment on 

these experiences across the many people with MDs they served 

across myriad market rental housing searches. Both groups were 

also asked to describe types of reasonable accommodations that 

may be needed and requested by people with MD during the 

housing search process that may further complicate housing 

access.

The consumer groups were split into two groups, with two forums 

for people with I/DD and two forums for people with PD, to 

make participation fully accessible and to gain as much participation as possible. Under the direction of a consumer peer 

mentor from the I/DD community, focus group questions were 

adapted for participants with I/DD to make them more accessible and understandable. Each participant was offered a gift 

certificate as an honorarium for his or her time, transportation 

assistance, a personal attendant, and other accommodations, 

such as food and drinks.

The focus group discussion was documented via real-time, 

Internet-based captioning that also enabled the discussion to be 

captured as a verbatim transcript. These data were then analyzed 

using a grounded theory approach to embed the findings in the 

lived experiences of people with MD (Huberman & Miles, 1994; 

Krueger & Krueger, 2009; Strauss & Corbin, 1994); that is, 

verbatim quotes from people with MDs and key stakeholders 

were identified and then organized into key themes related 

to market rental housing experiences. The results were then 

“grounded” in the voice of people with MDs themselves, a key 

strategy called for in previous literature and from the disability 

communities. After removing all personal identifiers (for example, 

names of people, landlords, or organizations) from the verbatim 

transcripts, the transcripts were coded and triangulated by a 

team of three researchers and were member checked by two 

participants with MDs. This process enabled the researchers to 

verify key themes and results, not only among fellow research 

team members, but also among people with MDs. The analyses 

and interpretation were completed using an iterative, constant 

comparative method to identify themes with corresponding 

quotations and examples; that is, after each round of analyses, 

the team met to build consensus and further interpret findings 

given different perspectives of different reviewers.
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Results and Findings

Participants

Participants in the focus groups included 25 consumers and 15 

stakeholders (see Table 1 for more detail about the consumer 

focus groups).

Out of 25 consumers, 15 had a PD and 10 had an I/DD. 

The sample reflected the diversity of the two large urban 

communities from which people were recruited, with greater 

participation by African-American people, people living in 

poverty or on significantly limited incomes, and people with 

less than a college degree of education. Several participants 

had recently moved out of institutional settings (for example, 

nursing homes, institutions for mental diseases (IMDs), and 

intermediate care facilities) to the community and were living 

in and searching for market rental housing, representing an 

Olmstead group4

 in that they had recently made the transition 

to least restrictive community living settings via state Medicaid 

initiatives, and shared this experience. The demographics of 

this sample are the result of the strategy of recruiting through 

local community agencies involved in housing support and may 

not represent the general population or other communities (for 

example, rural, other geographic areas).

Table 1. Demographics of Consumer Focus Groups and Interview Participants

Characteristic Frequency Percentage

Type of disability PD 15 60

I/DD 10 40

Sex Female 15 60

Male 10 40

Racial backgrounda African-American 17 68

Caucasian 8 32

Hispanic 2 8

Native American 2 8

Education Less than high school 6 24

High school/GED® 8 32

Some college 6 24

Associate’s/bachelor’s degree 3 12

Master’s degree 2 8

Marital status Single 19 76

Divorced/widowed/separated 5 20

Married 1 4

Annual income Less than $12,000 12 48

$12,000 to 20,000 8 32

$20,000 to 30,000 2 8

More than $30,000 1 4

Did not disclose 2 8

Mean (SD) Range

Age 47 (7.99) 21–62

GED® = general educational development. I/DD = intellectual or developmental disability. PD = psychiatric disability. SD = standard deviation.

n = 25.

a

 The sum of racial background percentages exceeds 100 percent because participants were permitted to check all racial backgrounds that applied.

4

 An Olmstead group refers to the group of people with disabilities who qualify to receive state-funded supports and services in the community rather than 

institutions based on the Olmstead v. L.C. decision.
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Findings

During the focus groups, participants with PDs and I/DDs discussed the steps involved in accessing rental housing, separating their comments into two phases of the process: (1) the 

barriers and potential discrimination experienced during the 

process of accessing rental housing, and (2) the supports and 

accommodations needed to remain in rental housing long term. 

The following section describes experiences shared by focus 

group members related to both housing search and retention 

and delineates similarities and differences in how they were 

experienced by people with PD and I/DD.

The Housing Search Process

Participants discussed an often lengthy process to search and 

apply for rental housing. Because of a lack of available or 

adequate units or because of the need to move or to find a new 

unit following a crisis, hospitalization, or institutionalization 

that resulted in a loss of housing, they repeated this lengthy 

process many times. The following participants’ comments 

summarize this complex process.

It took me over 3 years to get my apartment and live on 

my own. I tried so hard the first time and no one would 

rent to me. And then I landed up in a nursing home for a 

while and lost track of everything and had to start all over 

again. Every time I feel sick or think I’m getting worse I 

cringe—I might lose my place and have to start all over 

... that’s scary and really depressing to think about.

There’s not a lot out there for people like me [with I/DD], 

like you know, to live on your own. Every time we [participant and family] tried, nothing worked. Nobody would 

take me. ... My mom died and left me some money. X 

[developmental disability community agency] helped me 

find a place and now I’m on my own and I’m good at it ... 

I know a lot of people [with I/DD] who want to get out and 

live on their own and it takes a really long time to do that.

Approximately one-half of the participants with PDs completed this search on their own and had to learn by trial and 

error how to find landlords that would “accept them.” One 

participant said—

... the ones who are not so fast to judge you because of 

your mental illness. You’ve got to find those and sometimes it takes a long time before you do. You didn’t ask to 

be this way. It’s something that just happened. But if they 

won’t work with you, you can’t get in the door.

Other participants reported that during the search process they 

brought along a friend or family member, whom they described 

as a positive support and an advocate during the process.

I didn’t have family so I asked a friend to come with me. 

And I told her to watch out for me and let me know if she 

thought I was being taking advantage of, or to take notes 

and help me remember. It really helped me a lot cause we 

talked after. I felt safe with her.

Overall, people who brought along another person as a support 

reported feeling safer and more comfortable in the housing 

search process; however, both groups reported that they still 

experienced potential discrimination by landlords during the 

process. One participant said—

I’ve gone out by myself and gotten negative reactions to me 

and my disability, and I’ve gone out with a friend and still 

had problems with landlords reacting to my disability. It’s 

just when I’m with a friend at least I can check back after if 

they caught the same problem I did. It’s like having a safety 

backup just in case.

The other half of the participants with PDs and most of participants with I/DD completed their search with a community 

agency that served as a more formal liaison with landlords and 

housing agencies. Two participants described this experience.

X [mental health community agency] knew a landlord that 

would take chances with people with mental illness, and 

he did and he didn’t just stop with those, and I feel really 

grateful to know this man because he gave us a chance, an 

opportunity to have a place. He didn’t do a background 

check, he just accepted us to live there. He still deals with 

[agency name], so there needs to be more people like him 

and agencies like [agency name] to help broker that deal.

The case manager is the best person I have ever met ... 

she helped me with everything. ... She helped just get my 

foot in the door.

In several instances, participants described working with “housing locators,” including peer mentors with an MD who had 

gone through the housing search process and could support 

them in a unique manner.

Yes I got hooked up to Sue [name changed] who was one 

of those consumer mentors, they called her a housing 

locator. X [ mental health organization] hooked me with 

her and she helped me search for places on line, and figure 

out what to say in advance, like a kind of script and set 

of questions to ask. She also met me at places so we could 
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look at them together. She was great in pointing out what 

to ask about or there were certain features to think about. 

She also helped me compare different places after. But 

what was best is she’d been through all this herself, she 

had a mental illness too. I trusted her.

Barriers to Rental Housing: Getting in 

the Door

The first step of moving into the community requires gaining 

access to rental housing on the open market. Focus group 

participants raised issues that people with MDs experience 

when seeking housing, including issues relating to—

•	 Searching and finding information about housing 

availability.

•	 Viewing and assessing apartments in person with managers.

•	 Formally applying for units and receiving notification on 

whether that application was accepted.

•	 Finalizing the move into the apartment (from the time the 

application is accepted to the time of move in and changes 

during that time).

Participants with MD identified the following main challenges. 

•	 Disability disclosure and stereotypes related to MD.

•	 Landlords not understanding or responding negatively to 

reasonable accommodation requests as part of an application.

•	 Landlords imposing additional fees without explanation 

(for example, additional or more expensive background 

checks, additional deposits).

•	 Landlords denying or not encouraging applications 

based on factors other than disability, such as income or 

background history.

Issues with disability disclosure and stereotypes. The first 

challenge, disclosure of an MD during the housing search 

process, occurred in many different ways. Sometimes, people 

with MDs told property managers and landlords about their 

disability outright, not necessarily knowing they had a right to 

not disclose. In many cases, providing this information led to 

negative treatment, as one participant with a PD described.

The first time I did this I just blurted out that I was mentally 

ill. Now I know I don’t have to do this, it’s my right not to 

tell them. Now I’d wait and I coach people not to tell people you have a disability. There’s way too many attitudes 

about it and they’ll close the door on you right away.

For several people with I/DD, however, disclosure was a way 

for them and family/supporters to screen if the landlord was 

receptive to people with I/DD and if the unit and landlord 

overseeing it were perceived as a “disability friendly” place and 

situation. One family member noted the following.

We always say it up front that Joe [name changed] has 

a developmental disability, and then we wait to see how 

people react. We’ve coached Joe to say that he can take 

care of himself and live on his own too so if they ask questions, he can say that back. It’s kind of like a test to see 

how people react when we say that, and if it’s worth it to 

even apply there.

In some cases, an MD was assumed by landlords and managers 

based on how the person talked, looked, or acted on the phone 

or in person. One participant described this situation.

Sometimes, you know, it’s just how you talk or look. They 

can tell right away something’s wrong, you’re different. The 

more I talk, the more they figure it out. Then they start to 

make a lot of assumptions—that I’m crazy or not right or 

I’m drunk or on drugs or something, or I can’t take care of 

myself or will hurt them.

In many cases, people with MDs conducted their housing search 

in collaboration with a mental health organization, involving 

mental health professionals, case managers, and housing locators 

as liaisons during the process. Although consumers were educated on their rights to not have to disclose their disability during 

the housing search process, mental health staff and community 

organizations working with people with MDs sometimes disclosed 

small pieces of information, such as affiliation with this mental 

health organization, previous living situation, or background 

history, that could lead landlords to infer MD and potentially 

react. Two mental health stakeholders involved in housing 

provision said—

That if they saw, for example, here, in the [MI hospital] was 

the last place they lived, they would know that’s a place 

where people with mental disabilities live, and they might 

say, well, I don’t want somebody who lived at X to live in 

my apartment.

I would say that persons with serious mental illness and 

IMDs, the naming is very significant to the landlord when 

they learn that name, and the statutes for IMDs ... defines 

residents as inmates, as mental patients.

Participants also reported that landlords and managers sometimes asked outright about their disability, including questions 

pertaining to diagnoses, behaviors affiliated with a given disability, treatment they were or were not receiving, and the 

individual’s overall safety and judgment. Participants reported 

their experiences as follows.
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I had one guy that just said ‘what’s wrong with you? Are 

you OK?’ I told him it was just my psychiatric disability 

and he looked at me oddly and said, ‘What’s that? Are you 

taking any meds? Who’s your doctor?’

A lot of people ask me if I can take care of myself, or if 

I’m safe. Or they say, you can’t live by yourself.

As participants repeatedly described, many of the questions 

and reactions by landlords reflected common stereotypes and 

attitudes about MD and its relationship to competence and 

safety in community living. Participants with PDs discussed 

these stereotypes and their impact on finding rental housing.

Landlords don’t let you rent to—that word they use, “crazy,” 

they don’t want to rent to people who are crazy ...

I think the assumption we are to make is that folks who 

have mental illness are dangerous to others and will be 

dangerous to the landlord and the property. They’re not 

working so they can’t live independently, they won’t be 

able to keep the place clean, and they’re worried what will 

happen if they go off their meds.

Landlords’ experiences with previous tenants also shaped their 

attitudes toward new applicants with MD. Participants said—

If a person in the building has had a mental illness in the 

past and got kicked out, they probably wouldn’t let the 

next person in.

Somebody might have, for example, a past eviction for nonpayment after they became disabled and couldn’t work 

anymore. They might have even something a little more 

problematic, like they had a manic episode and were evicted 

for nuisance or something like that. ... And people are 

very, very unwilling—even low-income landlords are very, 

very unwilling to make the accommodation of disregarding 

less-than-wonderful stuff in the person’s tenancy history.

Focus group participants with I/DD also reported dealing with 

landlords’ attitude and stigma related to their disability; however, stereotypes attached to people with I/DD focused more 

on their competence. One participant described such attitudes.

One area we were talking about, other factors where 

I think there is a distinction between intellectual and 

psychiatric disabilities is assumptions of violence and 

how that could play into it. In the general public and 

the assumptions that are made about particularly with 

respect to schizophrenia as an example as opposed to an 

intellectual disability. I have found that to be true, that 

the supposition of violence with mental illnesses or some 

kinds of mental illnesses and the more common supposition 

I found with intellectual disabilities has been just that the 

person can’t handle the demands of being a tenant, not 

that they will do anything violent, but that they can’t cope.

These attitudes and stigma often prevent people with an MD 

from securing a housing unit from the very first step. From the 

first call, potential tenants are being screened and assumptions 

are being made about the potential renter’s competence related 

to community living. One participant described this situation 

from personal experience.

Sometimes you don’t even have to identify. It may come 

over on the phone. They may not get to first base to get an 

appointment to see the unit. So you might have a person 

who speaks in a way that would make them think they 

have a mental disability. ... That, right there, ... they 

don’t get past that first phone call.

The assumptions about competence and stereotypes about a 

given disability, which may be held by a particular landlord, 

can then lead to the consumer learning, or not learning, about 

any available units, or to the consumer being steered toward 

specific units or a particular location based on an assumed 

disability. This type of steering was perceived to be intentional 

segregation, as participants and stakeholders reported—

There was a situation where I applied for an apartment, nice, 

but it was part of, I guess the low income housing, so apparently they didn’t like something about my application, 

but at the end they ended up telling me we have a sister 

complex which is that you might fit in there, and I really 

got offended. I got offended because if I can use the same 

information to get in there, how come I can’t get in here?

For people with I/DD, they never even thought about them 

being on their own in their own place. They don’t have any 

concept of what that might look like or that it might work. 

They ask why they aren’t living in one of those homes, like 

a nursing home or institution. Or it’s NIMBY’ism as in 

Not in My Backyard, not wanting people with I/DD in the 

neighborhood. Sometimes it’s pretty subtle and you don’t 

even realize it til after you’ve left that they steered you 

away from their place.

Lack of understanding regarding reasonable accommodation requests. The second challenge related to getting into 

rental housing involved reasonable accommodation requests. 

Focus group participants with MD described many different 

types of accommodations that might be needed to live in the 

community and in a rental apartment. These included—
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•	 Cognitive supports for safety, judgment, memory, attention, 

organization, decisionmaking, and problemsolving. Such 

supports include environmental modifications; technologies 

such as alarms, sensors, and emergency response systems; 

signage; cueing; and human or personal assistance with 

tasks such as apartment management, budgeting and 

money management, scheduling, and food shopping and 

meal preparation. From a housing perspective, such an 

accommodation might require the need for additional 

keys, security access, or parking for support personnel. 

Cognitive assistance may also include the use of support 

and service animals.

•	 Emotional, behavioral, and social supports. These supports 

include the use of live-in or drop-in personal assistants, 

drop-in volunteers and check-in services, and support 

animals. From a housing perspective, such an accommodation might include a request for specific units or features 

within them to feel safe, to not disturb others or self, or to 

limit or manage social interactions with other people.

•	 Physical supports to accommodate additional physical and 

chronic health conditions, aging, deconditioning, mobility 

and coordination, and long-term side effects of medications. 

From a housing perspective, such an accommodation may 

include a request for physically accessible unit features or 

placement within a building, environmental modifications, 

grab bars and other access features, accessible parking, 

and use of or space for assistive and mobility technologies.

•	 Environmental features and modifications related to 

sound/noise, sensory, temperature, air quality/chemical 

sensitivities, and unit placement.

•	 System and policy accommodations related to completing 

applications and paperwork, bill payment timing, or handling policies. From a housing perspective, such an accommodation may include a request for alternative communication 

of important information or advance notice on any in-unit 

communication or maintenance, alternative forms of 

information access, policies to protect privacy and safety, 

extensions on payments, or holding a unit during an 

emergency or crisis.

Some of the accommodations described could be legally considered “reasonable accommodations,” while others describe 

supports that would not involve or need a formal request but 

might be perceived as “special requests” by landlords. Regardless, participants reported feeling that landlords have little 

understanding about reasonable accommodations for people 

with MDs, why they are needed, or an individual’s right to 

request them. One participant said—

Compared to people who use a wheelchair, I don’t think 

landlords get mental disability or any accommodations 

needed. It might be really important for me to live on a 

certain floor, or to have someone come into the place to 

help me with remembering and organizing or paying my 

bills, or I need advance warning about anyone coming 

into my place, whatever. But this looks different than say 

wheelchair access. They don’t get that I need these things 

because of my disability or they say things like ‘we can’t 

offer that to you cause we don’t do it for anyone else’ ... 

It’s almost like reverse discrimination—they’re using fair 

housing to deny me what I need because they don’t get 

the disability accommodations part of it, especially for 

someone with a mental illness.

Although many of these reasonable accommodations did not 

require any or very limited costs, landlords perceived them as 

not necessary or not reasonable. Stakeholders described these 

misperceptions.

She had found an apartment, secured it, but in order to 

move into the apartment, she needed to move in away 

from the bushes up front—there were bushes that were 

along the route to the back door, and she felt unsafe, and 

so she was asking to let her move into the front door, but 

they were refusing. So she just wasn’t able to move into the 

apartment and didn’t get that rental.

I had someone who needed a particular unit or floor, they 

might need a third-floor unit versus a first-floor unit if they 

have issues with safety, paranoia about other people, or 

a past history with violence or abuse in their lives ... they 

(landlords) think it’s just a personal preference or for the 

view, but it’s not. It’s a reasonable disability request.

This lack of understanding also applied to requests to have inhome assistance or the equivalent of a live-in personal assistant 

for cognitive and psychosocial reasons rather than physical 

support. A stakeholder described one such situation.

One issue we had was for a location that had a lease with 

one person, the individual needed to have someone there 

to provide other types of help to enable the person to stay 

living in the community ... like medication management, 

paying bills, coping with stresses, etc. And they were told 

the other person had to leave.

Participants with MD also reported confusion regarding the use 

of support animals, particularly for emotional support. One 

housing stakeholder said—

We actually have gotten quite a few cases about landlords 

refusing to allow emotional support animals to people with 
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mental illness and then the person doesn’t want to move in 

because they cannot bring their support animal. ... There’s 

a lot of confusion too on support animals, service animals, 

and companion animals and what that means for rental 

housing or what is considered reasonable.

Reasonable accommodations related to support animals also 

proved to be challenging for landlords. One family stakeholder 

said—

Even for the pets, you know, do you allow pets? Well no, 

we don’t. Well, mine’s a service animal. I just had this 

experience myself, just myself, and I said well, there’s a 

one pet rule. Okay, well I have three tortoises and a parakeet. Well, you’re going to have to get rid of the tortoises, 

and I’m like okay, well they’re service animals. Oh really, 

do they help you read? What services do they specifically 

perform? Well, they help with my daughter’s PTSD, so I 

would have to go before an appeals board.

Participants may also need physical accommodations. One 

participant described her need as follows.

I’m getting older myself. It’s not easy to get around and 

I can’t walk long distances anymore. I can’t carry my 

groceries up 3 flights. Sometimes my balance is off and I 

could use some grab bars in the bathroom so I don’t fall. ... 

But I’m scared to ask for anything else cause I’m afraid 

they’ll use it as yet another excuse to throw me out.

Additional requirements and fees. The third challenge that focus

group participants faced as they sought to access rental housing was the confusing and complex list of additional fees and 

requirements imposed on them during the housing search and 

application process. Participants discussed this issue as follows.

When you go to apply for a rental, you know, another 

thing to check is nonrefundable fees. People call me all 

the time, and say I got an apartment, but I have to pay a 

deposit plus I got to pay an application fee, and stuff for 

credit and criminal check and a laundry list of other fees. 

It’s not just the deposit. Its additional fees and its nonrefundable. ... You can go and fill out the paperwork, and they 

know when you’re filling it you’re not going to get it. So 

that’s extra money that they got.

I have no idea if this is even legal, or if they are charging 

me the same thing they do everyone else, or if it’s because 

I’m disabled and they don’t want me there. It’s all these 

extra fees and no one charges the same. There’s no rhyme 

or reason what they’ll charge you. In one place it’s $25 for 

credit check, in another it’s $100 and not refundable. That 

doesn’t make sense.

Participants said that they felt taken advantage of by housing 

providers, but they also felt that they could not prove that they 

were treated unfairly. Many participants reported that they did 

not complain about this treatment because they wanted their 

own place, and they worried that they would not be able to rent 

the unit without paying all of the requested fees. One participant said—

This happens all the time to me but I don’t say anything. I 

complained once and it just backfired on me, they pulled 

the unit away from me cause I questioned all the fees. Now 

if I’m looking and they have a lot of fees, I usually don’t 

even apply cause I know they don’t want me there.

Participants from I/DD and community stakeholders groups 

reported that landlords would take advantage of people with 

I/DD in a different way. As an example, one participant reported 

how a landlord falsified the paperwork without informing her, 

assuming that she would not notice.

Well, because I found out later what they did inside where 

I signed up for blah blah blah and agreed to pay extra for 

blah, blah blah, and then when my mother went and got 

the paper, because my mother knows my handwriting, and 

she said that ain’t even your handwriting.

The focus group of people with I/DD also pointed out that the 

paperwork required during the application process can be very 

complex and difficult for people with I/DD to see, read, and 

understand. One participant said—

They have these big long legal contracts that people with I/

DD can’t read and they don’t know what they are signing 

unless you have someone with them and then you’re pretty 

much letting the disability out of the bag and hoping it 

doesn’t backfire. It’s really easy to take advantage of them, 

or to bring it back later to hold against that person and 

evict them later.

Finding other reasons to deny housing. The fourth challenge 

that participants with MD described relates to landlords using 

reasons other than the presence of a disability to deny housing, 

such as income, credit, or criminal background. Participants 

described this issue as follows.

Categories that allow for housing providers to discriminate 

so in addition to the disability, you have the income, the 

criminal background, the substance abuse, you have no 

job, pick the one you want if you want to deny an apartment. That’s the challenge. 

Yeah, if you have a criminal background, then you have 

another strike against you. You have your mental illness, 
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and then, you know, sometimes people judge a book by its 

cover. It’s just, you know, there’s so many different things 

to go against us. Like I say, if you’ve got a criminal background, they’ll be like well they’ve got too many problems, 

and then you have a mental illness, so they find a way to 

discriminate.

The credit being the most dominant basis for denial when 

persons have been living in an institution with $30 a month 

in net income, and may have very old credit exposure or 

evictions for third-party credit reports, bad credit, boom, 

you’re denied. ... Landlord’s initial willingness to master 

lease or do some sort of work-around of people’s absence 

of credit or bad credit, and then changing their mind and 

saying, oh, by the way, we’re no longer going to accommodate.

Economic status and the use of rental subsidies, such as a 

housing choice voucher, were also perceived as a source of 

denial or differential treatment. Participants described their 

experiences with vouchers as follows.

Not enough vouchers so you can’t afford anything, you 

have to be on these waiting lists over and over and over 

again. Or when you get one and are lucky enough to do 

so, the landlord won’t take it. They’ll rent to someone else 

who doesn’t use a voucher.

I recently had a situation where I went to an apartment 

complex, and I applied and I do have a housing choice 

voucher and after I paid the money, you know, the application fee and the deposit and they gave me my address. 

But when other people came in with ‘jobs’, better jobs, they 

took my apartment back, they took it away after they 

approved it.

Barriers to Rental Housing: Staying in 

Housing Long Term

In addition to barriers to getting into rental housing, people 

with MD also described barriers to staying in, maintaining, and 

sustaining rental housing for the long term. One stakeholder 

addressed the issue of sustaining housing—

Where do landlords turn us down for renting or turn down 

a tenant? It happens much more on the retaining of housing than the acquisition of housing. It’s easier to get people 

in. The challenge becomes when things become difficult in 

terms of the maintenance of the apartment, what you do 

there, or the loss of a voucher, or other things happen.

Focus group participants raised issues faced by individuals 

with an MD as they sought to maintain a rental unit in the 

community, including the following five issues.

1. Ongoing events and situations that landlords used to evict 

tenants with MD.

2. Breaches of confidentiality and privacy.

3. Monitoring tenants with MD but not monitoring others.

4. Inadequate apartment maintenance and repairs.

5. Inhospitable, unsanitary, and unsafe living conditions.

Ongoing events and situations used for eviction. Participants 

reported that landlords and management staff did not have an 

understanding of the changing nature of their disability and, 

therefore, the changing reasonable accommodations that might 

be needed. Two stakeholders discussed this issue as follows.

It’s not just finding housing, it’s staying in that housing and 

keeping it over time. We can help people find a place but 

so often it’s more about being able to live there after they 

get in, and not getting thrown out or forced out. Sometimes 

this happens right after they move in; sometimes it’s after 

the person has something happen to them or there’s an 

emergency or crisis, or they lose a big support in their 

lives. Sometimes their benefits get cut or they can’t afford 

their medications and have troubles. It’s the long-term haul 

that’s the problem, and so many people end up moving 

from place to place and starting over.

We’ve seen cases where landlords have rented initially, but 

then, you know, based on some behaviors, which are not 

dangerous, but may not be typical, refused to renew the 

lease, and in the worst case, did eviction proceedings.

Focus group participants with MD also experienced medical 

emergencies and other crises that resulted in late rent payment. 

This type of situation provided landlords with excuses to evict 

rather than work with the individual to accommodate their 

return to the unit. One participant described an experience 

with a medical emergency and lost lease.

Sometimes life gets out of control. Like when I needed to be 

hospitalized and landed up in a nursing home for a while. 

It wasn’t my fault but I lost my lease and my apartment, 

and had to start all over again.

Without adequate supports or because of the loss of supports 

over time, people with MD experienced life changes that made 

it difficult to maintain management of their housing, putting 

them at constant risk for losing housing. One participant 

described the risks for people with MD.

What makes the issues of affordable housing when you get 

involved as a tenant is they have rules and guidelines that 

maybe a mental person with a disability like me, we can’t 
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keep up and we get penalized by the housing, and we will 

end up homeless eventually because there’s only so much 

a person with disabilities can do, like keeping your house 

clean, making sure that you go to events that they have, or 

making a payment when your disability payments are cut. 

You know, there are a lot of things that can prevent you that 

you accidentally can break the rules and you get penalized.

Confidentiality and privacy. Participants also reported many 

issues related to choice, control, and privacy that threatened 

their ability to remain in their apartment. Focus group participants described situations in which landlords or management 

staff would come into the apartment without permission in the 

name of “inspection.”

I could be laying in my bed asleep, and I could hear 

someone coming in, and they say our rules say we can 

come in within 24 hours of notice. But it also says you 

must let me know. I got a trauma. I used to get raped and 

beaten. And if I wake up and someone is standing over 

me, it’s terrifying ...

When they come to exterminate, they exterminate the 

whole building. They go through your drawers, shirts, 

underwear, I mean, like that’s their home, and that’s an 

issue because you have to respect privacy of the tenants.

A participant with I/DD reported how his landlord harassed 

him with constant reminders on rent due dates.

The lady keep bugging me every time. She keeps bugging 

me about, “you know, don’t forget, you’ve only got a week, 

so I’m gonna see you?” She’ll knock on my door and say it 

again and again—you know, lady, you’ve got to stop doing 

that. I know, tell me once, not two days, not three days, 

every day.

Monitoring tenants with MD but not monitoring others. 

Many participants described situations after moving into a unit 

in which their disability was not only disclosed to the landlord, 

but also to other staff and even to other tenants, which then 

started a cycle of constant surveillance and monitoring of their 

activities. Two participants described such situations as follows.

They figure that’s because you’ve got a disability [I/DD] and 

everybody knows you have a disability, they think they 

can take advantage of you. It makes you very upset, because 

they know you work and all that so they should treat you 

like any other renter. Instead they watch your every move 

and think it’s OK to go into your space without your permission to check up on you. They say it’s a safety check.

And they’ll watch you more. Yeah, every little thing that 

go wrong and the person don’t even have to have nothing 

to do with it. They put a label on that person, oh, she’s got 

a mental disability [I/DD]. She did it, we can put it on 

her, and they blame her for it. Doesn’t matter if she did 

anything, she’ll get blamed.

Inadequate apartment maintenance and repairs. In addition 

to landlords not informing tenants about regularly scheduled 

maintenance, they blame or hold accountable renters with MD 

for any issues in the unit, even if they resulted from regular 

wear and tear. One participant said—

You have a responsibility to report damage that occurs. 

And then if you don’t report it, some people are afraid to 

report things that are wrong in their building, the plumbing 

or whatever else. Then they say, oh, I had these crazy 

people in my property, and they tore it up. Well, they 

didn’t tore it up. They were living there for 15 years, and 

in 15 years it didn’t have another paint job or needed new 

plumbing or whatever. That’s the thing. You’re penalized 

because of your psychiatric disability.

Inhospitable, unsanitary, and unsafe living conditions. For 

many participants, repair needs in the unit remained unaddressed over time, resulting in unacceptable living conditions. 

Several participants discussed such conditions.

The landlord where I was living knew that most of the people 

there had mental health problems. We got free furniture and 

the landlord says it was brand new, and what happened 

was bed bugs were in my apartment and I reported it to 

the landlord, and then they wouldn’t do anything for a whole 

month. So I called DCRA (housing inspection agency). And 

they sent out someone. They got cited and said they had 

30 days to fix it. Here it is almost seven more months after, 

and they have not fixed it. So what I’m I have to do now 

is I’ve lost all of my clothes and all of my furniture, and 

I have a daughter and she couldn’t understand. She had 

mental health issues too and it’s really tough on her.

I had bug infestations a bunch of times, including bedbugs; 

I had bites all over my body. I complained and complained 

but they didn’t do anything. I filed a complaint and even they 

said, why don’t you just move? As if that’s possible? Do you 

know how hard it is to find a place when you have a mental 

illness? You’ll put up with a whole lot just to be in your own 

apartment. But sometimes the conditions are really bad.
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Many participants reported needing to bring in an outside advocate to troubleshoot and intervene with landlords regarding 

inadequate living conditions before actions to address them 

were taken. One participant with I/DD said—

Yeah, I used to have a hard time like if I needed something fixed in my apartment, they used to take forever. 

Until Quality Trust (legal protection and advocacy group) 

had to step in, and once they discovered who Quality Trust 

was, and I guess they had to look it up on the Internet, 

then they finally did something. My mother done all we 

could and we couldn’t get nowhere, once Quality Trust 

stepped in, then they started doing what they were supposed to do. What about people who don’t have somebody 

like Quality Trust?

Several focus group participants reported that when they 

complained about the condition of the unit, the building 

management staff told other tenants that the problem was 

due to the person’s MD, not the apartment conditions. This 

set off another cycle in which fellow tenants and the social 

community created an inhospitable living environment. A 

participant described one such situation.

I used to live in a place and had they what they call a 

socialization room... I would go in that room occasionally 

and socialize with people and all I would hear would be 

people talking about [mental health agency name] and 

how those people with mental illnesses were crazy and 

they were damaging the building and why did they let 

them live here. It’s tough to live in a place when you hear 

that kind of thing.
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Discussion and Conclusions

Like Nelson and Earls (1986), Nelson et al. (1998), and 

Corrigan et al. (2003) demonstrated in their qualitative and 

participatory research with people with PDs, directly involving 

people with MDs in housing and community living research is 

needed. This focus group research was co-facilitated by people 

with MDs, including people with PDs and I/DDs. Their firsthand experiences bring to the forefront the specific issues they 

faced in searching for, applying for, moving into, and staying 

in market rental housing.

As reflected in the results, people with MDs experience many 

barriers to getting into and staying in rental housing in the 

private market. Although individual experiences differed, focus 

group participants with I/DDs and PDs experienced similar 

patterns in potential housing discrimination in the private 

rental market in the two major urban housing markets represented in this research, and they experienced these issues in 

all stages of the housing process: before, during, and after the 

search and application process. Both groups struggled with 

issues of disability disclosure and, when disclosed, or even 

assumed, experienced pervasive stigma and stereotypes about 

MD that influenced their housing access and control. Nelson et 

al. (2007) found that perceived choice and control over housing were positively correlated with the quality of life of people 

with PDs in Canada. By better understanding the types of discrimination, where in the housing process they occur, and why 

they lead to barriers in obtaining and maintaining housing, we 

may be able to better understand housing discrimination and 

strategize these community living opportunities with people 

with psychiatric and I/DDs in the United States.

Participants in this research also discussed the lack of knowledge and understanding on the part of landlords and housing 

providers about the housing and reasonable accommodation 

needs for people with MDs as compared with those for people 

with more visible physical disabilities. This lack of understanding then led to many false assumptions or misguided beliefs 

about whether accommodation requests were reasonable as 

related to the disability or not. For example, although support 

animals are increasingly used for emotional and cognitive assistance, landlords told many participants that these animals did 

not qualify as reasonable accommodations. In addition, participants perceived that landlords and housing managers did not 

understand what reasonable accommodations may look like for 

people with PDs and I/DDs, particularly those related to cognitive 

and psychosocial accommodations. They expressed a need to 

better educate housing providers about reasonable accommodation strategies and how they might be expressed by people with 

MD and then implemented within private market rental housing.

From previous studies, particularly with people with PDs in 

Canada and other countries, we know that discrimination occurs 

during the housing process. Through this study, however, we 

learned from people with MDs in the United States about their 

specific experiences of private market rental housing discrimination, the types of discrimination that occur, and the stage(s) 

of the housing process during which they experienced these 

forms of discrimination. Thus, we better understand what private 

market rental housing issues and discrimination may look like 

for people with PD and I/DD, and this knowledge can informs 

efforts to develop mechanisms to mitigate these discriminatory 

practices.

Housing discrimination against people with MDs, however, can 

be complex, subtle, and hard to prove. Qualitative focus groups 

feature first-hand experiences and perspectives of people with 

MD related to potential discrimination, but they do not provide 

the evidence to demonstrate actual discrimination in everyday 

practice. Therefore, follow-up, rigorous discrimination testing 

with large samples of people with MDs continues to be needed 

to provide this evidence. This qualitative focus group research, 

however, highlighted many specific examples and situations 

that can inform large-scale discrimination testing design and 

delivery.
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