Accessible & Participatory Methods for 

Involving People With Mental Disabilities 

in Housing Discrimination Testing

Study of Rental Housing 

Discrimination on the Basis 

of Mental Disabilities: 

Short Paper 4

U.S. Department of Housing and Urban Development | Office of Policy Development and Research
ACCESSIBLE & PARTICIPATORY 

METHODS FOR INVOLVING PEOPLE 

WITH MENTAL DISABILITIES IN 

HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING 

DISCRIMINATION ON THE BASIS 

OF MENTAL DISABILITIES: 

SHORT PAPER 4

Prepared by

Katherine McDonald

Syracuse University

Tia Nelis

Joy Hammel

Janet Smith

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.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

iii

Contents

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

Introduction and Literature Review: A Summary of Involving 

People With Intellectual and Psychiatric Disabilities in 

Research................................................................................. 2

Methods................................................................................. 6

HUD Study of Rental Housing Discrimination on the 

Basis of Mental Disabilities....................................... 6

Debriefing Focus Groups ................................................ 6

Results and Discussion ........................................................... 8

Proactive Commitment to Inclusion................................ 9

Strategies for Tester Recruitment, Selection, Retention, 

and Matching........................................................... 9

Preparing and Supporting Testers: Initial Training......... 10

Preparing and Supporting Testers: Ongoing Support 

During In-Person Testing ....................................... 11

Preparing and Supporting Testers: Use of Companion 

Testers as Ongoing Supports.................................. 12

Documenting Differential Treatment and the Role of 

the Companion Tester............................................ 15

Recommendations for Expanded Testing in the Future......... 16

Recruitment and Training.............................................. 16

Data Collection ............................................................. 17

Testing Implementation Data................................................ 19

Recommendations and Conclusions..................................... 20

Recommendations......................................................... 20

Conclusions.................................................................. 21

References............................................................................ 22

Appendix: Debriefing Questions........................................... 25
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

1

Abstract

Scientific pursuits inclusive of community members bring benefits for science, community members, and society. Although a 

growing literature addresses how to involve people with intellectual and psychiatric disabilities in research, these methods 

have yet to be used in housing discrimination testing research, 

particularly in conducting in-person testing with people with 

intellectual and psychiatric disabilities (referred to as people 

with mental disabilities by the U.S. Department of Housing and 

Urban Development [HUD]). We conducted summative focus 

groups with people with intellectual and psychiatric disabilities, 

testing trainers and testing research team members who were 

actively involved in a pilot study of market rental housing discrimination to evaluate the testing experiences. We review key 

findings and recommendations to determine how to effectively, 

respectfully conduct housing discrimination testing with testers 

with intellectual and psychiatric disabilities, including implications for recruitment, training, data collection, and knowledge 

translation of findings back to disability communities and 

policymakers. We pay specific attention to accommodations 

and supports that contribute to high-quality, accessible, and 

inclusive in-person housing discrimination testing with testers 

with intellectual and psychiatric disabilities.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

2

Introduction and Literature Review: A Summary of 

Involving People With Intellectual and Psychiatric 

Disabilities in Research

In response to a history of exclusion and discrimination, the 

disability rights movement emphasizes the importance of involving people with disabilities in all matters that affect them. 

Inclusive approaches drive society from deficit-based thinking 

and marginalization to strengths-based thinking and human 

rights for people with disabilities (Charlton, 1998). These values 

provoke new ideas for research. Many argue that involving 

people with disabilities in the conduct of research is a moral 

mandate that can prevent research from having negative consequences, including further exploitation and stigmatization, and 

promote human rights (Beresford, 2002; Dubois et al., 2011; 

Duckett and Fryer, 1998). By conducting research with people 

with disabilities (and not only on or about them), scientific 

pursuits become informed by individuals’ lived experience. 

Insider views may help to create knowledge that more fully 

and accurately reflects reality, provide more informed evidence 

to guide policy, and encourage change that can improve the 

lives of people with disabilities (Beresford, 2005; Duckett and 

Fryer, 1998; Telford and Faulkner, 2004). Moreover, evidence 

is emerging that conducting research with people with disabilities leads to innovative research questions and designs, effective 

interventions, enhanced recruitment and participant retention, 

accessible data collection, valid data, and greater trust in science 

among community members (Bigby, Frawley, and Ramcharan, 

2014b; Bonham et al., 2004; Crawford et al., 2011; Dubois 

et al., 2011; Telford and Faulkner, 2004).

Evidence is also growing that community members involved in 

the conduct of scientific research encounter significant benefits. 

Community members often appreciate being able to share their 

perspectives, contribute, and meet new people; and they may 

make gains in knowledge, self-esteem, and confidence. They 

may also gain employment opportunities and skills such as 

how to use technology or how to conduct a formal test, think 

about and execute research, work as a team, use public transportation, and advocate for themselves and their community 

(Beresford, 2007; Bigby, Frawley, and Ramcharan, 2014b; 

Bonham et al., 2004; Conder, Milner, and Mirfin-Veitch, 2011; 

Dubois et al., 2011; Duckett and Fryer, 1998; Flood et al., 2013; 

Ochocka, Janzen, and Nelson, 2002). These gains can all improve the lives of people with disabilities and their participation 

in society.

A variety of approaches can be used to conduct research with 

people with disabilities. Although somewhat distinct from one 

another, they are united by shared commitments to bringing 

community members and professional researchers together to 

conduct research to promote positive community outcomes, 

valuing lived experiences, and equally appreciating the distinct 

contributions of community and professional researchers (Beresford, 2005; Bigby, Frawley, and Ramcharan, 2014a, 2014b; 

Ochocka, Janzen, and Nelson, 2002). Approaches vary, however, 

on the extent of power sharing between community and professional researchers. In this paper, we use the term communityengaged research to broadly capture input into the conduct of the 

research from community members. Many posit that communityengaged research requires support from funders and policymakers (Carrick, Mitchell, and Lloyd, 2001) and professional 

researchers committed to the inclusion and empowerment of 

people with disabilities (Conder, Milner, and Mirfin-Veitch, 2011; 

Duckett and Fryer, 1998; Walmsley, 2004a), an assumption 

that was evaluated in this project. Related to the latter point, 

community-engaged research demands that professional researchers change their traditional approach to research and attend 

to interpersonal and political dynamics in research (Nelson et al., 

1998); they may also need to demonstrate greater flexibility 

and creativity (Bigby and Frawley, 2010; Bigby, Frawley, and 

Ramcharan, 2014a; Conder, Milner, and Mirfin-Veitch, 2011; 

Dubois et al., 2011; Stevenson, 2014).

Community-engaged research with people with intellectual and 

psychiatric disabilities represents a relatively small, but growing, approach to research that is also called for by disability 

communities (Beresford, 2005; Ochocka, Janzen, and Nelson, 

2002; Stack and McDonald, 2014; Telford and Faulkner, 2004). 

What research that does exist primarily explores topics with 

which these communities have direct experience and uses 

qualitative methods (Stack and McDonald, 2014; Walmsley, 

2001). We are still, unsurprisingly, learning how to conduct 

community-engaged research with people with intellectual 

and psychiatric disabilities. Fortunately, many researchers are 

writing about their experiences and the success and challenges 

they encountered along the way. In this paper, we review 

these practices, with a focus on the involvement of people 
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

3

with intellectual and psychiatric disabilities in data collection, 

including the activities that lead up to data collection (that is, 

project design and preparation for data collection).

Surprisingly few authors discuss the selection of community 

researchers. Those who do describe the value of having community members apply for community researcher positions 

and undergo a selection process to identify fit between their 

skills and interests and the needs of the project (Bonham et al., 

2004; Delman, 2012; Dias et al., 2012; Hutchinson and Lovell, 

2013; Stevenson, 2014; Timmons et al., 2011). Some add that 

a similar process can occur as the research progresses into new 

activities by matching team members’ skills to specific tasks 

(Ochocka, Janzen, and Nelson, 2002).

Many researchers write about the need, after teams are 

formed, to develop explicit policies and practices to develop 

personal relationships, share power, provide disability-related 

accommodations, and train community researchers. Often 

these processes help to build trust, while also increasing the 

social validity of findings. For example, some existing literature 

stresses that professional researchers must create settings that 

enable positive relationships to develop (Nelson et al., 1998). 

Getting to know people, using first names, sharing personal 

information, and celebrating personal events can all help team 

members develop personal, positive relationships with one 

another (Beresford, 2007; Bigby, Frawley, and Ramcharan, 

2014a; Björnsdóttir and Svensdóttir, 2008; Dowse, 2009; 

Dubois et al., 2011; Duckett and Fryer, 1998; Gammon, 

Strand, and Eng, 2014; Nelson et al., 1998; Ochocka, Janzen, 

and Nelson, 2002; Richardson, 2002).

Establishing positive relationships also involves deliberate attention to transforming societal power dynamics so that power 

is shared between community and professional researchers 

(Clements, 2012; Delman, 2012; Nelson et al., 1998; Ochocka, 

Janzen, and Nelson, 2002). Acknowledging power differences; 

including community members on research teams and advisory boards; codeveloping principles and practices for working 

together; and sharing power by contributing to meeting 

agendas, alternating meeting chairs, listening to each person, 

negotiating with one another, discussing all major decisions, 

and clearly agreeing about roles and responsibilities are all 

recommended strategies for achieving power sharing (Abell et 

al., 2007; Beresford, 2007; Bigby and Frawley, 2010; Bigby, 

Frawley, and Ramcharan, 2014a; Burke et al., 2003; Chapman, 

2014; Dowse, 2009; Dubois et al., 2011; Duckett and Fryer, 

1998; Flood et al., 2013; Gammon, Strand, and Eng, 2014; 

Hutchinson and Lovell, 2013; Maddock, Lineham, and Shears, 

2004; Mirza et al., 2008; Nelson et al., 1998; Ochocka, Janzen, 

and Nelson, 2002; Rose et al., 2011; Timmons et al., 2011; 

Walmsley, 2004a; Ward and Trigler, 2001; Williams, Simons, 

and Swindon People First Research Team, 2005). Providing 

computer or other technology access and maintaining ongoing 

communication so that each team member is apprised of 

project developments and has opportunities to provide input 

may also help equalize power (Bigby, Frawley, and Ramcharan, 

2014a; Ochocka, Janzen, and Nelson, 2002; Rose et al., 2011), 

as can formally hiring community researchers, although employment can be complicated for those who receive government 

benefits (Beresford, 2007; Bigby and Frawley, 2010; Bigby, 

Frawley, and Ramcharan, 2014a; Dubois et al., 2011; Duckett 

and Fryer, 1998; Maddock, Lineham, and Shears, 2004; Nelson 

et al., 1998; Northway, Howarth, and Evans, 2014; Telford 

and Faulkner, 2004; Timmons et al., 2011). Securing resources—including adequate time—and reflective practices may 

also promote power sharing (Atkinson, 2005; Beresford, 2007; 

Bigby, Frawley, and Ramcharan, 2014a; Dubois et al., 2011; 

Flood et al., 2013; García-Iriarte et al., 2009; Ochocka, Janzen, 

and Nelson, 2002; Walmsley, 2004b).

For people with intellectual and psychiatric disabilities, a key 

component of community-engaged research is the provision of 

disability-related accommodations to promote environmental, 

sociocultural, and communication access (Beresford, 2007). 

In general, teams including people with intellectual disability 

appear to emphasize the need for a wider array of accommodations than teams with people with psychiatric disabilities. Many 

researchers emphasize that supports should be individualized 

and change over time with the needs of the project, and they 

also underscore the value of keeping in mind that everyone, not 

only team members with disabilities, may need accommodations (Chapman, 2014; García-Iriarte, O’Brien, and Chadwick, 

2014; Morgan, Cuskelly, and Moni, 2014; Ochocka, Janzen, 

and Nelson, 2002; Telford and Faulkner, 2004; Walmsley, 

2004b).

Some of these accommodations require “working across differences” (Nelson et al., 1998) by timing meetings differently, 

having breaks during meetings (for respite from cognitive 

engagement), and being willing to accept behavior and 

language less common in professional settings. Others involve 

helping community researchers with transportation, as many 

people with intellectual and psychiatric disabilities do not have 

a driver’s license or private transportation, may not use public 

transportation independently or need assistance learning new 

routes, or need financial assistance to cover costs of transportation (Bonham et al., 2004; Flood et al., 2013; Nelson et al., 

1998; Williams, 1999). Others create accessibility by pursuing 
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

4

research questions and methods (typically qualitative or photographic) more readily understood by community researchers, 

having meetings that involve more informal group discussion, 

providing short summaries of previous research (sometimes in 

audio or video form), and communicating using plain language 

(one idea per statement), bullet points, photos, symbols and 

graphics, and with a speed that works for everyone (Abell et al., 

2007; Atkinson, 2004; Beresford, 2007; Bigby and Frawley, 

2010; Björnsdóttir and Svensdóttir, 2008; Burke et al., 2003; 

Chapman, 2014; Conder, Milner, and Mirfin-Veitch, 2011; 

Crawford et al., 2011; Davidson, 2009; Dias et al., 2012; Dowse, 

2009; Flood et al., 2013; García-Iriarte et al., 2009; GarcíaIriarte, O’Brien, and Chadwick, 2014; Jurkowski and Paul-Ward, 

2007; Kramer et al., 2011; March et al., 1997; Nelson et al., 

1998; Paiewonsky, 2011; Richardson, 2002; Walmsley, 2001, 

2004b; Williams, 1999; Williams et al., 2010; Williams, Simons, 

and Swindon People First Research Team, 2005).

Many teams working with people with intellectual disability 

emphasize the value of human support to help community 

researchers access and share information; in fact, some teams 

believe community-engaged research is not accessible to people 

with intellectual disability without such support (Björnsdóttir 

and Svensdóttir, 2008; Chapman and McNulty, 2004; Walmsley, 

2001; Williams, Simons, and Swindon People First Research 

Team, 2005). This support often involves reading information 

aloud in conjunction with using the practices described previously. Support may be provided by research mentors or 

personal assistants (Bigby and Frawley, 2010; Chapman and 

McNulty, 2004; Flood et al., 2013; Schoeters et al., 2005; 

Timmons et al., 2011; Walmsley, 2004b; Williams, 1999; 

Williams, Simons, and Swindon People First Research Team, 

2005), or it may be provided by individuals already supporting 

the person with intellectual disability. In these latter cases, these 

individuals are also able to help the community researcher stay 

in communication, attend meetings, and take part in data collection (Burke et al., 2003; Conder, Milner, and Mirfin-Veitch, 

2011; García-Iriarte, O’Brien, and Chadwick, 2014; Walmsley, 

2004b). Some observers emphasize the importance that community researchers themselves be involved in the selection of 

support providers (Flood et al., 2013). Others note that community researchers with greater literacy and comprehension 

skills can provide support to those who have greater challenges 

accessing information and that experienced community researchers can help train and support new community researchers, 

taking on roles as peer mentors and navigators (García-Iriarte, 

O’Brien, and Chadwick, 2014; Morgan, Cuskelly, and Moni, 

2014).

To accommodate community researchers during data collection, teams have used pictorial interview guides or surveys and 

color-coded questions and communication devices to administer surveys (Bigby, Frawley, and Ramcharan, 2014a; Bonham 

et al., 2004; Flood et al., 2013). Others have paired community 

researchers with professional researchers, or had professional 

researchers available during data collection to assist as needed 

(Bigby, Frawley, and Ramcharan, 2014a; Bonham et al., 2004; 

Chapman, 2014; Hutchinson and Lovell, 2013; March et al., 

1997; Mirza et al., 2008; Ochocka, Janzen, and Nelson, 2002; 

Timmons et al., 2011), and some teams have found that community researchers can take increasingly independent roles as 

they develop relevant skills (Williams, Simons, and Swindon 

People First Research Team, 2005). Some teams debrief immediately after data collection to both troubleshoot for future data 

collection and to begin to reflect on findings and their meaning 

(Bigby, Frawley, and Ramcharan, 2014a; Chapman and McNulty, 

2004; Conder, Milner, and Mirfin-Veitch, 2011). Because community researchers have direct experience with topics under 

study, which may involve difficult topics such as abuse or discrimination, some teams work with community researchers to 

develop plans and supports for any emotional upset they may 

experience (Dowse, 2009; Dubois et al., 2011; Flood et al., 2013; 

Northway, Howarth, and Evans, 2014).

Support for involvement in data collection may also be provided 

via ongoing, project-specific training, sometimes incrementally 

offered based on project phase (Clements, 2012; Delman, 2012; 

Dubois et al., 2011; Hutchinson and Lovell, 2013; Maddock et 

al., 2004; Nelson et al., 1998; Ochocka, Janzen, and Nelson, 

2002; Perry and Felce, 2004; Telford and Faulkner, 2004; Ward 

and Trigler, 2001). This training typically involves the entire 

team and provides opportunities to watch and practice research 

activities such as collecting data or sharing findings via role 

plays and skits and via individualized feedback on performance 

(Abell et al., 2007; Bonham et al., 2004; Chapman, 2014; Dias 

et al., 2012; Flood et al., 2013; García-Iriarte, O’Brien, and Chadwick, 2014; Jurkowski and Paul-Ward, 2007; March et al., 1997; 

Northway et al., 2014; Paiewonsky, 2011; Perry and Felce, 

2004; Walmsley, 2004a; Ward and Trigler, 2001; Williams 

et al., 2010).

Recent policy and legislative changes suggest that the number 

of people with intellectual and psychiatric disabilities accessing 

the rental market will markedly increase over the next several 

years, yet we know little about the extent of housing discrimination against this protected class. What little research has been 

conducted on housing discrimination on the basis of mental 

disability has not employed a community-engaged research 
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

5

approach in a large-scale, in-person housing discrimination 

testing effort completed with and by people with intellectual 

and psychiatric disabilities themselves. The recent HUD-funded 

Study of Rental Housing Discrimination on the Basis of Mental Disabilities offered an opportunity to pilot this approach, supporting the conduct of 101 in-person housing discrimination tests 

that were conducted in two separate metropolitan areas. The 

goal of the testing was not only to measure discrimination against 

people with intellectual and psychiatric disabilities, but also to 

test a variety of testing methods with the goal of demonstrating 

a potentially feasible approach to nationwide testing.

After the completion of the in-person testing task, a series of 

focus groups were held with project leaders, testers with intellectual disabilities, testers with psychiatric disabilities, and companion testers. This paper documents the feedback, observations, 

and lessons learned from the focus group participants regarding 

the overall in-person testing experience and recommendations 

for future researchers who may seek to conduct larger-scale 

housing discrimination research employing a communityengaged research approach.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

6

Methods

HUD Study of Rental Housing 

Discrimination on the Basis of 

Mental Disabilities

HUD recently sponsored a pilot study of housing discrimination 

experienced by people with “mental disability.”1 The project 

had several major components, including the establishment of 

an Expert Panel to provide guidance to the research team and 

HUD over the course of the project; a series of short papers on 

relevant topics related to housing discrimination on the basis 

of mental disability; and pilot testing to measure housing discrimination against people with mental disabilities using a 

variety of methods, including e-mail testing, telephone testing, 

and in-person paired testing.

The study employed a community-based, participatory research 

approach to actively involve people with intellectual and psychiatric disabilities in the following aspects of the project.

•	 Initial focus groups to identify potential housing discrimination experiences and preferred ways to disclose mental 

disability during a test from the consumer perspective.

•	 Membership in the project Expert Panel that monitors and 

gives recommendations across project activities.

•	 Initial tester training session (1 day) with companion 

testers and followup practice tests in the field as a pair.

•	 In-person testing, data collection, and documentation.

•	 Post-testing debriefings with testing coordinators.

•	 Final summative focus groups with testers to evaluate 

how the testing experience went, positive strategies used 

to support them, and recommendations for potential 

expanded testing outside these two sites in the future.

•	 Co-authors on HUD short papers to reflect the consumer 

voice and implications for taking information learned 

back to disability communities represented.

The initial literature review and focus groups, input from the 

Expert Panel, and a small set of exploratory in-person tests 

served as preparatory steps to working with in-person housing 

discrimination testers with intellectual and psychiatric disabilities. These efforts were designed to provide key insight into 

housing discrimination experienced by this population and ideas 

for how to involve community members as in-person housing 

discrimination testers, including the recruitment, selection, 

and training of testers and the data-collection process. A total 

of 101 in-person paired tests were conducted, with each pair 

consisting of an individual with an intellectual or psychiatric 

disability and a companion without a disability.

This project represented the first time people with intellectual and 

psychiatric disabilities served as in-person testers on a multisite, 

larger-scale basis in housing discrimination research; therefore, 

this pilot project was also assessing—

•	 The feasibility, reliability, and fidelity of testers from these 

groups.

•	 The use of paired companion testers as a support to these 

testers.

•	 The accessibility of training, testing, and data collection 

materials to enable these testers to fully participate in this 

project.

To this end, many reasonable accommodations were utilized to 

proactively support testers, many of which are discussed and 

evaluated in the following debriefing focus group results.

Debriefing Focus Groups

To evaluate the inclusion and active participation of people with 

intellectual and psychiatric disabilities as housing discrimination 

testers, we conducted four summative focus groups with key 

participants and stakeholders involved in this housing discrimination pilot study. These focus groups were with—

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).
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

7

1. Project leaders. The team who designed and carried out 

the project, including the two principal investigators, two 

testing coordinators from regional sites, and four project 

team members involved in training and research protocols.

2. Testers with intellectual disability. Three testers with 

intellectual disability from the Chicago and Washington, 

D.C. sites.

3. Testers with psychiatric disabilities. Four testers with 

psychiatric disabilities from the Chicago and Washington, 

D.C. sites.

4. Companion testers. Five people who were trained and 

conducted in-person tests with testers with intellectual 

and psychiatric disabilities from the Chicago and Washington, D.C. sites.

In all, four focus groups, including 20 individuals involved with 

the in-person paired testing, were held. The focus groups were 

held in the weeks immediately after the completion of in-person 

testing and data collection so participants could reflect on their 

testing experiences over time. Individuals participated in the 

focus groups in person in Chicago at Access Living Center for 

Independent Living and via teleconference in Washington, D.C., 

connected via the Equal Rights Center (ERC). All participants, 

except those on paid project positions, received a $50 gift certificate to reimburse them for their time, and, in cases where 

needed, received transportation funding. Participants also signed 

consent forms and the University of Illinois at Chicago Institutional Review Board approved the research.

The focus groups were facilitated by two people: (1) a member 

of the project Expert Panel with extensive academic and research 

experience in participatory action research with people with 

intellectual disabilities and (2) a member of the project Expert 

Panel who is a leader and disability advocate in the intellectual 

disability community and who self-identifies as an individual 

with intellectual disability. Both facilitators had previous experience conducting qualitative focus groups; neither was directly 

involved in conducting the in-person testing.

The facilitators asked broad questions with specific probes to 

delve deeper into areas of interest identified by project team 

members, participants, and HUD (see specific group guides in 

Appendix A of this paper). Peer mentors in these communities 

reviewed questions for the testers with intellectual disabilities 

and psychiatric disabilities to ensure they were accessible and 

easy to understand. All groups were asked to describe their 

experience with the in-person testing (including whether they 

felt respected), what went well and what challenges were encountered, what was learned over the course of the project, 

whether companion testers were necessary, whether people 

with intellectual and psychiatric disabilities can be testers, and 

ideas for making the project better and doing this work on a 

larger scale. For the project leaders, we asked additional questions about how they designed and implemented the project 

(including tester recruitment and selection, training, and data 

collection) and what strategies they used to include testers with 

intellectual and psychiatric disabilities. Testers were also asked 

whether they would recommend being a tester to other people 

with disabilities. Lastly, both testers and companion testers 

were asked whether they knew what to do if they encountered 

a problem during the in-person testing.

A real-time captioner was used to document the focus groups 

and create verbatim transcripts for each group. Research assistants then checked these transcripts using notes taken during 

the focus groups. The first author, using an inductive data reduction process, conducted a thematic analysis to identify key themes 

and meaningful patterns among themes. All authors critically 

reviewed the themes, and revisions were made until agreement 

was reached (Braun and Clarke, 2006). Themes were then member checked, or audited, by the lead facilitator with intellectual 

disability to ensure they accurately portrayed the experiences of 

testers with disabilities and could be relayed back in an accessible format. After they are finalized, results of the focus groups 

will also be shared with all focus groups participants.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

8

Results and Discussion

In general, testers, companion testers, and project leaders 

enjoyed working on the project, and valued the opportunity 

to be part of what they saw as important work.

I enjoyed the project. (tester with intellectual disability)

My experience was great. (tester with intellectual 

disability)

Testers felt respected by others and felt that trust was gained as 

a product of receiving accommodations to support their involvement. Many testers wished the project lasted longer or that they 

could do more testing than their financial situation would permit (because of the receipt of benefits). Testers also felt they 

benefited from their work because they learned how to conduct 

apartment searches, take notes and complete forms, and evaluate potential housing discrimination issues and access needs.

I got to see other areas of noncompliance ... where things 

didn’t work so well. (tester with intellectual disability)

The experience I got is how to look for an apartment 

and learning how to show I.D. and stuff. How to ask for 

applications. How to take it home and get a business 

card. That’s how you look for a job but it is a different 

experience. (tester with intellectual disability)

The process of even filling out a report. I’ve never done it 

before. (tester with psychiatric disability)

They also had a chance to meet new people, go out in the 

community, and see new types of apartments and areas of their 

community.

I got to meet new people I haven’t met before. (tester with 

psychiatric disability)

It was kind of nice to get out. (tester with psychiatric 

disability)

I got to see apartments I wouldn’t have seen. (tester with 

psychiatric disability)

As companion testers witnessed potentially differential treatment 

toward testers with disabilities, they came to better appreciate 

the value of the project; these experiences also strengthened 

their commitment to the work.

You know, the things I learned this time around is if you do it 

by yourself for so long, you’re a lot more removed from the 

process of what you’re doing. You know what you’re doing 

and you know this is good stuff you’re doing. But when you 

have that person right there with you [referring to tester 

with disabilities with them at tests], there’s a different type 

of investment. On my part, there is a different type of 

investment. It is—it hit home that I was doing something 

important. (companion tester)

Companion testers also had opportunities to observe the capabilities of people with intellectual and psychiatric disabilities.

Another major thing I learned is just how capable these 

people are. I had worked with some people with these challenges in the past, these mental disabilities and I had, you 

know, some feel for how they worked at an ordinary job. 

Again, the dedication I saw on the part of the two people 

I worked with and also just how capable they were. They 

really didn’t need help in terms of being able to memorize 

what was required. No help at all. I learned to have all the 

more respect for people who have these so-called mental 

challenges. (companion tester)

The only frustrations testers and companion testers expressed 

involved instances in which landlords did not show up for 

appointments (and, hence, they felt disappointed that time was 

wasted and initially uncertain about how to handle the situation), apartments shown by maintenance or janitorial staff who 

could not answer questions or provide a meaningful experience, 

and apartments far away from public transportation. One tester 

reported knowing a landlord from church.

When I walked in the door and saw the woman, I kind of 

knew that I knew her. And then when she looked at me and 

she looked at my name and she said oh, you’re [name]? 

And I said yes, ma’am. And she just gave me this look like 

I know you, too. And it really kind of freaked me out and I 

just kept, I stayed with the role and when she asked for my 

phone number or e-mail address, I just fumbled. ... I tried 

to ... throw her off and stuck to my script ... it turned out 

fine. (tester with psychiatric disability)
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

9

Proactive Commitment to Inclusion

Project leaders felt that their interest and excitement in working 

with people with disabilities, their commitment to including 

testers with intellectual and psychiatric disabilities, and their 

proactive approach to recognizing that accommodations would 

be critical to promote the successful inclusion of testers with 

intellectual and psychiatric disabilities. For example, project 

leaders worked with focus-group participants and the project 

Expert Panel, which included many members with disabilities, 

to proactively identify potentially needed accommodations to 

make in-person testing possible and accessible to testers with 

disabilities. These processes helped the research team and testing coordinators design training and testing protocols responsive to the accommodation needs of testers with intellectual and 

psychiatric disabilities (described in the following section).

I would say that from the very beginning, you know from 

the research design planning on the data collection planning, 

you know, we had in mind and identified areas where 

we might need to adapt our typical tester recruitment 

and training and maintenance in order to accommodate 

using testers who actually have intellectual or psychiatric 

disabilities. And there were really helpful members of the 

study team as well as Expert Panel members who assisted 

in identifying the kinds of things that we might need to 

incorporate or address or be aware of. (project leader)

I think the first thing we did was the inclusion of a companion tester ... someone to support testers to remember 

details and to help in documenting experiences. (project 

leader)

We would just kind of check in with them about what they 

needed. ... Do you want me to read it to you? ... What’s 

their preferred method of contact? (project leader)

Strategies for Tester Recruitment, 

Selection, Retention, and Matching

Testing coordinators from the two metropolitan areas broadly 

recruited potential testers, typically by calling (often multiple 

times) a variety of community groups and organizations in which 

people with intellectual and psychiatric disabilities actively participated or from whom they received housing or community 

living services. Because of widespread employment disparities 

among this population, some people with intellectual and 

psychiatric disabilities were found to be more available to work 

as testers; however, this fact may also have limited the recruitment of testers with full-time jobs or busy schedules.

Testing coordinators also communicated extensively with potential testers to discern if testers could complete the essential job 

duties. In these interactions, testing coordinators talked about 

the value of providing potential testers a candid and thorough 

description of the project and their expected role (including 

emphasizing the responsibilities akin to other jobs), assessing 

how the potential tester understood his or her role, and the 

potential tester’s comfort with “pretending” to be searching for 

an apartment and disclosing their disability during the housing 

search process. All these issues were proactively covered in the 

initial training.

The team maintained flexibility in the tester training protocols, 

simplifying and limiting background information and lecture. 

Instead, the team focused on mini practice exercises and open 

discussions about questions to enable the testers to gain comfort 

with doing a test and working with a companion tester. Testing 

coordinators and trainers acknowledged that these adaptations 

to improve the usability and accessibility of the training materials 

could be useful in other discrimination testing and training 

projects with protected classes other than people with intellectual and developmental and psychiatric disabilities.

For some project leaders, initial training helped test coordinators 

make a final determination about a potential tester’s involvement 

in the actual in-person tests.

We did some pretty extensive interviews with people and 

not that they were these formal interviews but more of kind 

of longer conversation. So I think each time we met with a 

new tester candidate, it probably took about an hour that 

we spent with each person ... just completely being very 

honest and frank about what the project’s going to look 

like. Assessing their comfort levels ... we asked a number 

of questions and really tried to feel out if they understood 

what this was about. (project leader)

I tried to get people to come to the training because I figured 

in the practice test, it would become obvious whether or 

not they were able to do the study. (project leader)

One of my big struggles is many people didn’t feel comfortable disclosing their disability. So there were a lot of people 

who were interested and said oh, well, I’ll be the companion 

or I just don’t want to be involved because they didn’t feel 

comfortable disclosing their disability. On the MI [mental 

illness] side, that was I think one of the biggest struggles 

recruiting there ... but we did get enough testers. (project 

leader)
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

10

Testing coordinators also noted that they needed to allocate 

significant time to the recruitment process, needing to initially 

recruit about three times the number of testers needed. For 

example, in some cases—most notably among potential 

testers with intellectual disability—availability and reliability 

were issues (for example, getting training scheduled, not 

showing up for scheduled training, the availability of reliable 

transportation, and the need to navigate a new transportation 

route without support). This challenge of time was especially 

difficult given the need to coordinate testers with intellectual 

disabilities with companion testers for initial training, practice 

testing and for each in-person test.

Getting and keeping people who had intellectual disabilities 

engaged was one of the hardest things in terms of reaching 

out, I reached out to a lot of different organizations, a lot 

of different people. I had people who, you know, put me in 

contact with specific individuals that they thought would 

be great. And I just couldn’t get them in for training. They 

would have conflicts. I would call that week to remind them 

and they had scheduled something else. (project leader)

Despite challenges, testing coordinators from the two participating 

community agencies were able to recruit the necessary number 

of testers given their extensive contacts and constant networking 

with community groups and people with disabilities, something 

that could not have been done by an agency that was not familiar with and embedded within disability communities. The use 

of these community-testing organizations, Access Living and 

ERC, were constantly identified as a critical component of the 

project and a key to success in actively supporting people with 

intellectual and psychiatric disabilities during the in-person 

testing effort.

Testing coordinators also noted it was important to identify 

people who would be good companion testers, and ensuring 

a strong rapport between a tester with disabilities and his or 

her companion tester was key to the tester’s comfort and to the 

quality and efficiency of testing. Coordinators also noted that 

it was especially important that testing coordinators regularly 

monitor how that match was experienced by both testers and 

companion testers throughout the testing assignment, including assessing this fit during the initial training, in which the 

team purposively built in many opportunities for pairs to get 

to know each other and become comfortable with each other 

during practice tests.

Testing coordinators and testers agreed that pairs should be 

rematched if one of the members was not comfortable and that 

tester choice of companion was very important to the comfort 

and fidelity of the tester and data collection.

I enjoyed working with [companion]. I think we work real 

well together. (tester with intellectual disability)

The energy just wasn’t there [referring to relationship 

between tester with psychiatric disability and her first 

companion match]. She was on a totally different page ... 

she was more in thought and in words about what she was 

doing as far as her own personal business was concerned. ... 

I’m not saying she didn’t do what she was supposed to do 

but the thing was that first of all, she did not know how 

to provide the information that was necessary. She could 

remember it but she kept jumbling it up. The other thing 

was that she didn’t necessarily want to give me a copy of 

it. I just kind of became very forceful and just called her 

out directly and said you cannot write like this. This is not 

about you. But that’s just my attitude. So I was kind of 

uncomfortable with her. ... I did inform staff here that 

I would prefer not to work with that individual. (tester 

with psychiatric disability)

We worked around that and we found that some of the 

testers worked well with certain companions of their 

choice. (project leader)

Preparing and Supporting Testers: 

Initial Training

Project leaders worked to design tester training to effectively 

engage testers with intellectual and psychiatric disabilities 

and actively support their learning. For both groups, training 

materials deemphasized complicated text, reduced the number 

of ideas presented at one time, and incorporated graphics, photos, 

and images to illustrate more abstract points, such as civil rights. 

The trainings also included opportunities to observe testing 

skits performed by testing coordinators and project staff first, 

and then for testing pairs to actively engage in several different 

testing scenarios through role plays (moving from working in 

pairs with an assigned project staff to role playing in the front of 

the whole group and getting feedback afterwards) and frequent 

breaks to take in information learned. Based on initial insights 

from consumer and stakeholder focus groups and discussions 

with the Expert Panel at the start of the project, project leaders 

delivered the training differently for each group to maximize 

their learning. For example, testers who had an intellectual 

disability had the information broken into smaller units followed 

immediately by opportunities to practice a small skill first and 

then build up to practicing a full test, and finally moving on 

to an actual practice test in the field. Testers with psychiatric 

disabilities received initial information in one sitting and then 

practiced different scenarios.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

11

We structured trainings so that we train testers with 

intellectual disabilities and separately so that each of 

the sort of three categories of testers, the control testers, the 

testers with intellectual disability and the testers with 

psychiatric disabilities were trained separately so the 

content wasn’t different in the trainings but the 

delivery might be a little bit different. The companions 

for the protected testers were trained together with the 

protected testers ... this helped to make them feel like 

partners or a testing team. (project leader)

In developing the presentation for the training itself ... 

[we] simplified the Power Point presentation pages so 

they weren’t overwrought with information on one page. 

We tried to keep it to you know, two to three bullet points 

per page. So that we were providing the information but 

providing it in a way that wasn’t so overwhelming to any 

of us. And I think—I also tried to put in some artwork. 

Some color, some graphics. So that it wasn’t just a monotonous white background with a border. We tried to keep it 

interesting and accessible to that group. (project leader)

We did role playing which was very, very helpful [emphasis 

given]. We did an initial role play with the staff members 

and then we had the individuals do small group role plays 

of a scenario being out in the field. And then we reflected 

as a group and this brought up lots of great questions on 

testing. And that was something we don’t normally do in 

our training. And was very, very helpful. (project leader)

We created skits to make these trainings more engaging. I personally thought that was a really effective—a little bit more 

enjoyable for both ends. Some showed a best case scenario 

and some showed a worst case scenario so they could see 

a range of what might happen. So that testers could better 

understand what we’re asking them to do before they even 

started the role plays themselves. And we also allowed 

time for frequent breaks which probably was helpful as 

well for many of the testers coming in. (project leader)

Testers felt that these experiences—particularly the opportunity 

to practice and receive individualized feedback—helped them 

learn their responsibilities and feel prepared for their role.

I think I was really equipped doing the training. (tester 

with intellectual disability)

The training was fine in terms of like kind of prepared 

you for worst case scenario. (tester with psychiatric 

disability)

What I felt worked well are the people that I worked with 

here that was in charge. [The testing coordinators] all of the 

project. They took so much time to work with the testers. 

They invested a lot in role playing before we went out on 

tests. (companion testers)

Some testers noted that when there was significant time between training and testing in the field, it was beneficial to have 

opportunities to brush up on their skills and debrief about how 

they were doing. Project leaders felt that providing a significant 

amount of time during training that would be devoted to 

hands-on learning was essential.

Preparing and Supporting Testers: 

Ongoing Support During In-Person 

Testing

Project leaders also supported testers during data collection in 

ways that testers and companion testers found helpful. Project 

leaders provided scripts and checklists to help testers remember 

the personal information they would need to provide during 

testing. They also provided reminders via e-mail, telephone, or 

both (cell phone communications were used frequently before, 

during, and after testing) and were readily available to respond 

to questions and assist with unanticipated problems.

And so there was always somebody to answer the phone 

[at testing coordination site]. So it was never like an 

organization that you can’t get back to. They are here. 

They were there. And they were supportive. (tester with 

intellectual disability)

The agency itself here [testing coordination site], they’ve 

been extremely open. It seems to have an open door policy. 

So it’s like well can you stop in at so and so I can’t make 

it at that time. Can I come at such and such a time. Yes 

that’ll work. They’ve been here to be supportive as well.

(tester with psychiatric disability)

If I had any questions about anything, I either e-mailed 

[the testing coordinators] or whatever or if I needed to 

know like say if I’m on my way there or the day before 

that, okay, what time is it? I would call them and they were 

very helpful with that. (tester with psychiatric disability)

We allowed a lot of time, a lot of extra time for the briefings 

and debriefings than we normally do for testing. (project 

leader)

Many project leaders and testers agreed that being able to debrief 

with the testing coordinators immediately after each test (either 
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

12

per the telephone or in person) was very helpful. The project 

design intentionally had this debriefing occur within 48 hours 

of the actual test and, in many cases, testers completed debriefing immediately after the test or within 24 hours.

For some, being able to complete the forms at the testing coordination agency allowed them access to onsite computers and to 

the testing coordinators in case they had questions; these factors 

helped them submit completed forms quickly and accurately.

We always came back and used the computers here [testing 

coordination site]. That was useful for two reasons. First, it 

was immediate. Second of all, I have a patchwork of computers and I’ve had a variety of difficulties with them. So it was 

really nice to use the computer here. Use their downloading 

system. And when we had a question about the questionnaire 

and there were some confusing questions, [testing coordinator] was right there to tell us what she wanted. So I 

think that was really important because in the past, I have 

waited—when I was testing on my own or with someone 

else, we’ve waited awhile to do the narrative and the 

questions. But that was so helpful, I think to the tester and 

to me to get it done right then and get it where you had 

help. I thought that went really well. (companion tester)

Project leaders felt it was important, whether for training or 

data collection, to ask testers what they need assistance with 

(for example, writing, reading, or a quiet room to complete 

forms in) and to be flexible in responding to testers’ emergent 

needs. Many noted that support decreased over time as testers 

increased their skills and comfort. Although some testers 

initially felt nervous, they reported becoming increasingly 

comfortable as they gained experience.

I did pretty good. I got nervous on a few tests but after that, 

I got the hang of it. (tester with intellectual disability)

Thus, supporting a key group of testers was important so they 

could do multiple tests and feel comfortable in doing so, rather 

than trying to have a large pool of testers who might conduct 

only a single test.

Preparing and Supporting Testers: 

Use of Companion Testers as 

Ongoing Supports

Companion testers also provided support to testers during data 

collection. For example, when testers forgot to ask a question 

of a landlord, “got off track,” or “froze,” companion testers 

were able to naturally prompt the tester or provide a response.

The agent asked me how much did I make? And that’s the 

first time I froze on that. Practiced with [testing coordinator], research team. When they finally asked that question, 

I froze ... but [my companion tester] jumped right in and 

talked me through it. (tester with intellectual disability)

There’s times I can stutter. And then you know, I go and I 

look up. He [companion tester] would prompt me. (tester 

with intellectual disability)

I was with three different companions and they all had 

done this before. They knew okay, what to look out for. 

They could think on their feet. Which is good because 

sometimes I forgot something and they brought it up.

(tester with psychiatric disability)

And from my standpoint, it was slightly easier because I was 

in the background observing as opposed to having to lead the 

test asking the questions with the other person who would, 

you know, be asking the things. Occasionally, if they [tester 

with disability] would not bring something up, that would 

need to be brought up, then I would poke up. Oh, you wanted 

to ask about what lease lengths. (companion tester)

Companion testers also reassured testers and helped them feel 

less nervous during data collection or in a new area of their 

community.

He said it is okay to be nervous but after that, you’ll get 

the hang of it. Just be yourself. Just say why you’re here 

and then just tell why I’m here to help. After we did all of 

that then we were role playing. After we got out of the car, 

it worked out well. (tester with intellectual disability)

The person I was paired with was really awesome and he 

had done these types of things before so having somebody 

who had experience I thought was really helpful in terms 

of just like pointers and making me feel calm because I felt 

like if we had two people who had never done this before, 

we could have blown it or forgotten something. (tester with 

psychiatric disability)

I think I took pressure off the main tester. They didn’t have 

to remember everything nearly as much because I was 

there like keeping track. But at the same time, they would 

often need at least a little prompting. They would forget a 

question or two. And I would be there to be able to say oh, 

weren’t you curious about this? And they would say oh, 

yeah, that’s right. If I hadn’t been there like that part of the 

test could have easily been forgotten. (companion tester)
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

13

Companion testers were also able to provide assistance by taking notes, organizing and remembering information, helping 

out when unanticipated situations arose, and in some cases 

with transportation.

She helped me with role playing with [testing coordinators]. And to help organize my notes before we went on 

each test. (tester with intellectual disability)

I think that it is important to have a companion when you’re 

going out because your eyes just cannot catch everything. 

Your ears cannot hear everything. And your mind will not 

hold everything. (tester with psychiatric disability)

Even having somebody to talk to like the times that we did 

take the public transportation together and having them 

be there and say oh, you know, don’t forget you wanted 

to ask—which was fine because in my story, part of my 

disability was forgetting to ask things. So he could openly 

remind me and it wasn’t weird at all. Oh, this is great. So 

that really helped me a lot because sometimes they would 

really want to sell the apartment. They would be talking 

and talking and I would forget one or two things so he 

could remind me. So I think those three things, it was 

nice. I really got to know my partner and I had the same 

one throughout the whole thing. So it was just nice having 

somebody there. It was like meeting up with a friend to 

go do it so that helped a lot. (tester with psychiatric 

disability)

The companions ended up being really, really helpful in 

getting that filled out in a timely manner and also capturing a lot of details because you know, they were taking 

notes. (project leader)

Many testers and companion testers felt that companion testers 

may have helped some testers feel less stressed because immediate 

support was available, that testers and companion testers complemented one another during data collection by offering different 

ideas, and that working as a pair made the experience more 

enjoyable. Testers and companion testers noted that the support 

provided by companion testers during data collection may have 

added credibility to the disclosure of a disability by testers.

I think we were very believable. We were very believable 

when we were there. He would reinforce to them that you 

know, she has a disability. ... I’m here to take the notes.

(tester with intellectual disability)

I think it kind of backed up my claims a little bit. I guess 

kind of add more proof to whatever story I was throwing 

out there. (tester with psychiatric disability)

I feel like having the companion backed up the claim. If 

I just went out there, I have a disability, I do have memory 

issues. But having that person backing you up, it made it 

more real. (tester with psychiatric disability)

For when it was the case where the main tester would have 

a developmental disability that made it hard for them to 

remember things and thus I was there to take notes, that 

provided such a perfect excuse for me to take notes in the background. And it was great. I appreciated that. It made things 

just a lot easier. They didn’t bat an eye to see me in the background scribbling down things the whole time the test was 

going on. That worked well for me. (companion tester)

On the other hand, some companion testers wondered whether 

their presence tempered potential opportunities for differential 

treatment by landlords.

A lot of times, they would say that partially looking at me. 

I knew they were sort of saying that because they know I’m 

recording this. They say yeah, well, you know—one guy 

say well I think people with disabilities, they should have 

just as many rights as other people. He’s looking at me. 

I just think that if I weren’t there, that response wouldn’t 

have been there. ... I won’t go as far as to say less discrimination but it was more—they didn’t rush us through it. 

They were more respectful. They were more engaging. So 

I don’t know if it was—I don’t know what the end result 

would have been. That’s why I don’t know if I go as far as 

saying they were less discriminatory. (companion tester)

I have to agree with that because on at least a few of the 

tests, I feel like if I hadn’t been there, they probably would 

have treated the person differently because they were 

clearly uncomfortable that the person had the disability 

but they would look at me and you could tell they were 

holding their tongue. I can’t say for certain but I got that 

impression on a number of the tests. I think my presence 

there did cause them to treat the person with the disability 

differently. (companion tester)

Most participants felt that companion testers were most effective when they saw their relationship with the tester as a partnership. That is, when companions understood that they were 

there to support testers, not to be testers themselves.

There was a mutual respect before a narrative was sent 

over to the office, we both reviewed it no matter who the 

primary writer was. Particularly with [my companion 

tester], we would sit in the car. Do you think I need to put 

that in? I said yeah, put that in! (tester with intellectual 

disability)
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

14

Because I was a lot better typer than my partner, companion. What we did is I would type it up. He sat next to me 

so we would go through—we both took notes and then we 

would go through and make sure that our notes jive or he 

might have something I forgot to take down and we would 

go through and fill out the questions first that we would 

use and then do the narrative. We wrote the narrative 

together and I would say it out loud and then double 

check with him. It was like a team effort. (tester with 

psychiatric disability)

The first one I did, that was kind of stressful. Because of 

the companion I was with and with the narrative, she 

just started typing everything up without even telling me 

anything that she was typing or even telling me what she 

was—so I was just sitting there. She’s like I did this, I did 

this, I did this. [Tester with psychiatric disability] did this 

and I did this and I did this. That kind of frustrated me. 

So after she had done that, and plus there was stuff left 

out and stuff that—so I just—I retyped like most of it 

because a lot of stuff wasn’t in there and a lot of stuff that 

was said in there. Then basically, I had to leave. I had 

finished signing it and she had just waited for the companion to come back and look at it and sign it. The second 

person I was with, basically, it went a lot better. Because 

they explained it that since I was the person doing the test 

and the companion would look over it and I would ask is 

there anything else I should put or what else should go in 

here and stuff like that. Then she would look over it and 

then it was all done. (tester with psychiatric disability)

I had to keep in mind that it was a partnership. (companion tester)

To achieve this outcome, companion testers need to be flexible 

to tester’s needs and preferences.

I had to be more patient because I’m used to just doing it 

all on my own and I really had to make sure I gave my 

partner room because he—my partner had the answers 

and I did, too, and mine were waiting to be blurted out. ... 

I had one partner ... he talked and talked. If he got off 

track, I had to sort of get in there. Another partner went 

at a totally different place on the other side and I had to 

find out when he actually needed prompting because he 

navigated it differently. And then I had another partner, 

I mean, partner of partners. It was like golden. So you 

know, just dealing with the different personalities or the 

way people navigated differently. (companion tester)

The dynamic of successful relationships evidenced itself when 

testers and companion testers had discussed and agreed on who 

would do what, had good communication before and after data 

collection, and both contributed to the completion and approval of reporting forms. It may take mentoring, training, and role 

playing to help companion testers excel in these supporting roles.

I think the biggest—one of the biggest things that we did 

was to—from the start of testing was to not make assumptions about what testers could or couldn’t do. So this came 

up especially in terms of who—which person in the pair 

was going to be taking on the role of writing up the test 

report and the narrative and that there was no assumption 

made that one or the other was going to do it. Kelly and 

I both were really involved in facilitating, figuring out, 

among each pair, after each test, figuring out who was 

going to take on that role. And what that was going to 

look like and what the other person might be doing at the 

same time. Like who was going to be taking on the actual 

typing up, writing, that kind of stuff. And I think this was 

obviously important in terms of people with disabilities 

feeling respected but also modeling that for the companion. 

So modeling it for the people without disabilities, for them 

to he isn’t how we’re going to treat each other and you know 

to really respect that we all have different strengths and 

limitations so I think that was one of the biggest things.

(project leader)

This observation may be especially true for companion testers 

who had been testers themselves in other discrimination tests. 

Although their previous experience provided great knowledge 

and insight, they also had to transition to playing a supporting 

rather than primary role.

I had to learn to sit back a bit and let somebody else carry 

the ball more. (companion tester)

When directly asked whether companion testers are needed, 

nearly everyone agreed that most testers with intellectual disability would need a companion tester to complete data collection. 

Many participants felt that most testers with psychiatric 

disabilities, however, and perhaps some testers with intellectual 

disability, could initially use a companion but could then do 

testing on their own as they gained experience.

I would not have been able to do that without a companion.

(tester with psychiatric disability)

But if it had been longer, a year or seven months or something, I felt that by the time I eventually—we didn’t have 

time to keep going up but I felt by that time, I probably 
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

15

could have done it by myself. ... But having the partner 

there is like having training wheels. (tester with psychiatric disability)

I feel I would have been able to do this on my own if I had 

done this before and I mean I’m a lot different than a lot 

of other people or whatever. I don’t mind going anywhere 

in the city. (tester with psychiatric disability)

I think a couple of my partners could have did it totally on her 

own if it were about going right up to it and it happening 

but if you go right to it and it doesn’t happen right then and 

there, that’s where you get that—you know, those things 

that might happen that you don’t know how to take care 

of. (companion tester)

I think most of our testers with MI had an incredible 

ability to recall all of the questions. I feel like they could 

have done these tests on their own. And we had—one of the 

testers with the developmental disability who also I think 

could do these tests on his own. (project leader)

Documenting Differential Treatment 

and the Role of the Companion Tester 

Lastly, some testers reported that landlords treated them differentially and that the companion tester helped to document and handle 

that treatment. For example, one tester was asked repeatedly 

whether they had a criminal background, what their income 

was, and whether they could afford the unit.

The resident managers kept wanting me to say that I had 

a criminal record. She went over that a few times. Are you 

sure? Because we’re going to look. I said no, I’m a person 

with a disability. You tell me now, I can take that into 

account. She asked me three times. The first “no” should 

have been sufficient. I answered her three times. (tester 

with intellectual disability)

Another tester felt the landlord was suggesting she may not be 

intelligent enough to live in the building, and another was told 

the landlord would pray for her.

One guy was very nice. He prayed for me. He hoped that 

my mental illness got better and he was praying for me 

[tester smiles and shakes head]. He was very nice about it 

though. (tester with psychiatric disability)

Other testers reported landlords acting distracted (talking 

on the telephone or looking at their watch), being abrupt in 

interactions, refusing to provide an application (likely because 

an application had been received earlier in the day), or simply 

“giving attitude.”

Generally people greeted you. They greeted you politely. 

But there is an attitude. And there was nothing in the 

training or in the process to put in the attitude. The attitude is not something that they say. But you feel it. (tester 

with intellectual disability)

We had one person—I guess he was the realtor that 

refused to give us an application to an apartment. It was 

like okay. He was going to give us a business card. Just 

abrupt with us. Someone had put in an application that 

day. Figured I’m done. ... We had another lady, she wasn’t 

rude. I feel like if she had a watch, she would be looking at 

it every 10 seconds. (tester with psychiatric disability)

Companion testers had the sense that testers appreciated having 

someone with them to witness and validate this treatment, and 

to member check their documentation of it.

I mean the fact that I was able to see it, I think made them 

feel a little better because after some tests, they would say 

did you see when they asked me that? I said yeah, that was 

something they would have never asked me. So having someone acknowledge that, yes, this is going on, I think probably 

at least made them feel a little better as unpleasant the 

discrimination obviously made them feel. (companion 

tester)
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

16

Recommendations for Expanded Testing in the Future

Although the testers understood the scientific value of the 

current testing approach and its focus on one specific disability 

group (for example, intellectual or psychiatric disability), many 

protected-class testers wished the project could be broadened 

to better reflect the lived experience of disability, especially 

because many people with disability experience more than one 

functional limitation. For example, some people with intellectual 

disability also were anticipating some future physical access 

issues and wanted to be able to document those as well. They 

also thought it would be illuminating to study the qualities of 

“accessible” housing, particularly what that means and looks 

like for people with intellectual and psychiatric disabilities.

Widen the scope. We dealt with intellectual disabilities 

but developmental disabilities, they run neck and neck. 

Being able to get in a building and get out of a building 

safely. Noticing the differences. ... So just widening the 

scope of things so we can mention in a narrative that 

if you see a problem, you know, because like you said, 

discrimination ... if there is a difference in treatment 

and in placement, that’s discrimination. I see where that 

exists. I see where that exists. That whole thing about 

where the ramp is. How do you get in? Where the steps 

are. Apartments that don’t have elevators. How do you 

accommodate? They’ll say well, it’s okay to live here but 

you don’t have an elevator. Just widening the scope. So it 

would be easier to identify the discrimination. (tester with 

intellectual disability)

There are certain properties that are HUD or affordable 

properties that persons with disability because of their 

ability to pay. Their real ability to pay. We went into this 

role having a good salary and a trust. In reality, persons 

with disabilities don’t have that financial means. And the 

buildings that they live in weren’t included in the study. 

And some of those buildings are HUD funded. And they 

are substandard. And that’s it. So again, it’s like make it a 

little more real for persons with disabilities. (tester with 

psychiatric disability)

I would include more people with props. Wheelchairs, 

walkers, you know. More visual effects. Maybe you know 

button your shirt up wrong. (tester with intellectual 

disability)

This type of detailed experiential information was gained in 

this project by adding qualitative focus groups, before and 

after the testing, with people with intellectual and psychiatric 

disabilities, and it is recommended in the future that qualitative 

methods, such as focus groups and potentially participant 

observations and accessibility audits be included.

When considering expanding this work at a larger geographic 

scale and across more sites, project leaders, testers, and companion testers had many recommendations. For example, project leaders felt that having an experienced, centralized oversight 

team would be important for making sure that the in-person 

testing efforts are standardized across the sites (including 

training), facilitating ongoing communication among sites, and 

providing ongoing support and accommodations as needed.

Recruitment and Training

Project leaders further confirmed the importance of additional 

strategies that were used in this pilot project, such as the need 

for housing organizations to partner closely with organizations 

run by people with disabilities within testing regions, to succeed 

in this work. They also stressed the importance of providing adequate time for the recruitment, training, and ongoing support of 

testers with intellectual and psychiatric disabilities, with some 

suggesting initially recruiting about three times as many testers 

as originally needed. Holding training in places that are familiar 

to potential testers, such as at disability and community organizations, could help attract testers with intellectual and psychiatric 

disabilities because they are more likely to trust these sites.

If I was to design the study, I would design it and build in 

with the time and the resources to work with this particular population to get them in, be able to, you know, work 

around their schedule a little more, maybe do trainings in 

a place they’re already going to be. (project leader)

Many project leaders emphasized the importance of not making 

assumptions about what testers can and cannot do when preparing 

testers and companion testers for data collection. They also 

agreed that experienced testers with intellectual and psychiatric 

disabilities and companion testers might be well-equipped to 

train future testers, and their role as peer mentors and trainers 

should be considered in future trainings (perhaps with the aid 

of videos that they could be involved in producing).
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

17

It would be good to have an old tester come in and you 

know, just share the experience. (tester with intellectual 

disability)

Project leaders again emphasized the value of building in time 

for mentoring and one-on-one training. Everyone agreed on 

the benefits of ensuring that everyone has an opportunity to 

role play and complete a practice test with feedback.

We were the first selected to do the role playing so we had 

a lengthy period of role playing and that was very helpful. 

But we did not do a practice test. That probably would have 

been more helpful. (companion tester)

Some testers added that having everyone engage in more than 

one practice test may be advantageous.

Because the revised training specifically designed for this project is more engaging and participatory than traditional tester 

training, some project leaders thought it might be effective to 

use for other housing discrimination projects too.

Although recognizing that each person is unique, some companion testers suggested that training should include up front 

some general information about intellectual and psychiatric disabilities in a respectful way that acknowledges the considerable 

heterogeneity of people with intellectual and psychiatric disabilities. This type of training could be developed in partnership 

with peer mentors. Project leaders added that trainers can 

readily model respectful behavior and ways to acknowledge the 

strengths of people with intellectual and psychiatric disabilities 

to further support companion testers.

Data Collection

For data collection, some testers recommended that they receive 

a checklist detailing everything they should do before a test 

(including practical information such as using the restroom). 

Some testers also expressed a desire to do tests in areas where 

their personal characteristics match those of the local community and in areas that feel safe.

I know if I go to certain neighborhoods, they’re going to be 

wondering why a white girl is looking for an apartment 

here, unfortunately. So race does become a problem.

(tester with psychiatric disability)

Testers and companion testers felt it might be best to ensure 

that apartment viewing appointments are with leasing agents 

and not maintenance personnel.

I never met an actual landlord. Always a maintenance guy or 

a real estate agent. (tester with psychiatric disability)

Some testers also added that testers should also be involved 

in making calls to arrange apartment viewing appointments 

because some of the testing information is requested at that 

point of contact.

We had a situation where a lot of the questions would be 

answered by the companion as they were making the appointment phone call. (tester with psychiatric disability)

I think the hardest part of this for me, I’ve done quite a 

bit of testing in the past and nothing very similar to this 

in the past but maybe the hardest thing for me about this 

particular assignment was making the phone calls. Because 

several times, you would have the person you were talking 

to start asking well, is this apartment for you? It got tricky 

trying to steer them away or saying you were short on 

time. (companion tester)

Some project leaders wondered how they could ensure that 

testers receive support for any emotional reactions they may 

have during data collection. Many encouraged future teams to 

allow testers and companion testers to return to the testing coordination agency after each test to debrief and complete reporting 

forms, and this time would also be a potential time to support 

them emotionally and give them additional resources, if needed.

I would have them come in so that I could help them almost 

do the debrief while they’re writing the narrative to make 

sure all of the information is being caught as opposed to 

sending them off on their own to fill out these crazy forms.

(project leader)

A few testers noted that the clarity of the forms could be improved so that testers and companion testers might have fewer 

questions for testing coordinators and that testers might benefit 

from being connected to disability advocacy and community 

groups when they are not already so connected.

I feel like some of the questions were worded in a way 

where you had two options and none of it fit. (tester with 

psychiatric disability)

There was a few questions that I couldn’t even understand 

the way they were written. (tester with psychiatric 

disability)

I think maybe some of the forms would have to be changed 

for the I/DD people. It is so much information. It is so wordy.

(project leader)

Some testers asked whether alternative payment options could 

be used so that those who receive benefits could more fully 

participate without having their subsidized disability income be 

at risk.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

18

I guess I would have liked to do more of these but it would 

have affected my social security being reported, the amount 

of money. So I don’t know. Instead of—I don’t know if they 

would get reported with gift cards but or like say prepaid 

cards or whatever. But it might have been better like with 

that in my situation because I would have liked to do more 

of these because I had a really good companion and everything. (tester with psychiatric disability)

Finally, several focus group participants added that everyone 

should have the chance to reflect and debrief at the end of the 

project in focus groups with a small sample of testers and staff, 

similar to what was undertaken during this project. They felt the 

focus groups allowed for them to validate their feelings, revisit 

their experiences and make sense of them, reconnect with other 

testers and companion testers, and validate their contributions 

and role in the overall project. Having a thank you celebration 

after the testing also provided this validation and a chance to 

continue social networking with fellow testers.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

19

Testing Implementation Data

In addition to the protected-class testers with mental disabilities and the control testers who typically constitute a matched 

pair test, companion testers were recruited and trained to 

accompany testers with mental disabilities on the in-person 

visits. Discussions with the Expert Panel, the study team, and 

HUD established the credibility and benefit of someone posing 

as a family member or friend to accompany the tester with a 

mental disability to provide support and assistance during the 

test and in preparing the test report forms. Companions were 

able to reduce the stress of conducting the test for the testers 

with mental disabilities, prompt testers to remember questions 

to ask and profile information, keep test visits focused, ensure 

that test reports were complete and accurate, and reinforce the 

reveal of the mental disability.

The use of companions added some costs to the in-person testing. Each test required the use of three people (protected-class 

tester, companion, and control tester) rather than two people, 

with the additional challenges of coordinating the schedules of 

three people for each test, which took more time and generally 

required longer intervals between tests. The costs of training, 

tester fees, and travel expenses for the testers and the additional 

companions were about 30 percent higher. In traditional paired 

testing, 101 completed test visits would require 202 personcontacts (number of tests x number of testers); the use of 

companions resulted in 303 completed person-contacts. The 

costs and the scheduling were manageable challenges; the 

in-person testing was completed on time and within budget.

Not all testers with mental disabilities would necessarily require 

companions if doing this repeated testing over time, particularly 

after they become accustomed to the testing process. Some of 

the testers would be excellent testers on their own; others would 

have more difficulty conducting the tests and preparing the test 

reports without the support and assistance of the companion. 

Because of the importance of ensuring the consistency of test 

protocols and test reporting and the range of needs for assistance 

of testers with intellectual and psychiatric disabilities, however, 

having companions for all protected-class testers is appropriate 

and justified the additional costs.

Three trainings for testers were held in Chicago in June and July 

of 2014 for 27 participants, of whom 23 actually conducted 

tests. Three trainings were also held in Washington, D.C., in 

April, June, and August of 2014 for 21 testers; 17 conducted 

tests. We did not experience more attrition of testers with disabilities than would be expected in any tester pool. Testers with 

mental disabilities needed longer pretest briefings, particularly 

in the beginning, and a longer time for debriefing after the test, 

although this factor was partly because the tester and the companion both participated in the debriefing, which lengthened 

the conversation.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

20

Recommendations and Conclusions

Recommendations

Based on our experience in implementing this housing discrimination testing with people with intellectual and psychiatric 

disabilities, review of relevant literature, and findings from the 

focus groups, the following recommendations are made to 

ensure high-quality, accessible, and inclusive in-person housing discrimination testing with testers with intellectual and 

psychiatric disabilities.

1. Project leadership and design.

•	 Project leadership is deeply experienced by, and 

important to, people with intellectual and psychiatric 

disabilities. Embedding testing coordinator sites within 

local disability and housing rights communities was 

especially valuable in supporting testers with disabilities. Many of the testers were interested and excited 

about working with the project team in the future to 

become more formal members of the team through, 

for example, roles such as peer mentors and trainers.

•	 Testing sites and all project members need to actively 

foster commitment to, and belief in, the inclusion of 

people with intellectual and psychiatric disabilities at 

all stages of research projects. They could potentially 

model how to transfer this process to new sites that 

have not explored these concepts or train communities to implement these approaches in future testing 

research. Several testers also expressed that HUD leaders 

could potentially learn from testers with intellectual 

and psychiatric disabilities to gain more experience 

in inclusive and participatory strategies and research 

design in all aspects of housing research, housing 

policy, and accessible design.

•	 Having an inclusive project requires the fostering of 

coleadership in which the research and community 

colead and collaborate together to design and conduct 

this type of discrimination research.

•	 Inclusion also means bringing housing discrimination 

experts together with people with personal experience 

of disability to fully and accurately understand the 

lived experience of finding and keeping rental housing.

•	 Future testing should use these experienced testers 

in future protocol development and training, using 

pilot project testers as peer trainers and mentors in a 

train-the-trainer model.

2. Recruitment and selection of testers.

•	 Reinforce responsibilities and expectations of participation with potential testers to encourage increased 

reliability and validity of findings.

•	 Provide time, needed resources, and expertise to 

recruit, select, and support team members with 

intellectual and psychiatric disabilities.

•	 Have a sustained, informed selection process for 

testers and companion testers that involves time to 

build relationships and develop a match.

•	 Involve experienced testers with intellectual and 

psychiatric disabilities in recruitment and selection 

for any future testing, as they also have key contacts 

throughout communities to assist in recruiting and 

could be a vital support to new testers.

3. Training and data collection.

•	 Be proactive and flexible in accommodating team 

members with intellectual and psychiatric disabilities 

in training and data collection, including specific 

attention to strategies to make participation more 

accessible and inclusive to these target groups.

•	 Match supports to individual needs and reevaluate 

the need for supports as testers gain experience. Have 

a choice and range of supports and accommodations 

available to testers.

•	 Provide person-centered support with choice, including having a choice on whether to stay with a specific 

companion tester or to choose another who is a better fit.

•	 Examine whether companion testers are needed long 

term or not—between the added credibility and validity 

added to the testing versus the potentially unanticipated 

effect that their presence may actually decrease or 

buffer differential treatment.

•	 Use and design plain-language materials, pictures, role 

plays, and videos in all training and data collection 

instructions and forms.

•	 Use technology to enable people with intellectual 

disability to take on increasingly independent roles in 

testing, such as voice-operated smart phone or tablet 

documentation.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

21

•	 Structure trainings tailored to specific community 

needs (for example, provide all the information and 

then practice for testers with psychiatric disabilities, 

but organize information into smaller segments 

followed by many practice opportunities for testers 

with intellectual disability).

•	 Attend to emotional aspects of testing in training and 

provide needed supports and resources via testing 

coordination debriefings and referrals.

•	 Discuss attitudes that may be encountered during 

tests in the initial training and consider how to capture 

attitudes and treatment in more detail in reporting.

•	 Ensure everyone has time to role play, practice, and 

receive individualized feedback during trainings.

•	 Support companion testers as they learn and practice 

how to provide positive, effective support to testers 

with intellectual and psychiatric disabilities in a 

respectful, person-centered, and directed way.

•	 Build in ongoing support and training, including 

ensuring that testers know whom to talk to regarding 

concerns, questions, or issues.

•	 Anticipate need for additional time to coordinate 

in-person testing schedules and transportation accommodations, and potentially use this information during 

the matching of paired testers.

•	 Add in adequate time for testing coordinators to 

debrief with testers after the actual test and to assist 

them in accurately completing full reports.

•	 Continue to provide immediate payments for work 

with no upfront costs to community members so they 

can easily participate.

Conclusions

This research effort hypothesized that people with intellectual 

and psychiatric disabilities could be viable testers within housing discrimination research. To date, very few studies have 

actually involved this protected class in housing discrimination 

research, and, within them, did so on a very small basis such 

as small-scale pilot tests to show initial potential. This project 

actively involved people with intellectual and psychiatric 

disabilities in the implementation of 101 in-person tests within 

real rental housing situations. The team was successful in realizing 

this inclusion and participation, which is a significant milestone 

and a new finding for housing discrimination testing research.

This success was predicated on the use of many accessibility 

and participatory strategies that were proactively built in to the 

design of the overall study.

•	 The inclusion of disability and housing rights agencies in 

testing trainers and coordination.

•	 Accessible training that could be flexibly adapted to meet 

different tester needs and to enhance the match between 

testers with disabilities and companion testers.

•	 The use of companion testers to support testers with disabilities in a respectful partnership.

•	 Built-in opportunities to debrief and ask questions throughout the testing.

All the aforementioned strategies were cited as critical to supporting the active participation of people with intellectual and 

psychiatric disabilities in the testing.

Specific challenges that were identified during testing included 

the need for (1) longer and more extensive time and energy to 

recruit potential testers with intellectual and psychiatric disabilities and to address issues if testers dropped out or were not 

available because of other life issues, (2) more customized and 

ongoing training and practice sessions for testers, and (3) a longer 

timeframe and the supports needed to debrief and complete 

testing reports. Accommodating all these challenges required a 

longer period of time in the field for actual testing; this extended 

timeframe was built into this specific research effort and would 

also need to be implemented in any future larger-scale testing.

Not only did people with intellectual and psychiatric disabilities 

participate in the testing, but they also were actively involved 

in the study design, the evaluation of study forms and ways to 

document experiences, supporting each other and new testers 

throughout the project, and evaluating their experiences and 

member checking findings after the testing. Such communityengaged research was cited as valuable, and in fact critical, to 

the successful implementation of this housing discrimination 

study and to any future expanded studies of housing discrimination with people with intellectual and psychiatric disabilities.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

22

References

Abell, Simon, Jackie Ashmore, Suzie Beart, Peter Brownley, 

Adam Butcher, Zara Clarke, Helen Combes, Errol Francis, Stefan Hayes, and Ian Hemmingham. 2007. “Including Everyone 

in Research: The Burton Street Research Group,” British Journal 

of Learning Disabilities 35 (2): 121–124.

Atkinson, Dorothy. 2004. “Research and Empowerment: Involving People With Learning Difficulties in Oral and Life History 

Research,” Disability & Society 19 (7): 691–702.

———. 2005. “Research as Social Work: Participatory Research 

in Learning Disability,” British Journal of Social Work 35 (4): 

425–434.

Beresford, Peter. 2002. “User Involvement in Research and 

Evaluation: Liberation or Regulation?” Social Policy and Society 

1 (2): 95–105.

———. 2005. “Developing the Theoretical Basis for Service 

User/Survivor-Led Research and Equal Involvement in Research,” 

Epidemiologia e Psichiatria Sociale 14 (1): 4–9.

———. 2007. “User Involvement, Research and Health Inequalities: Developing New Directions,” Health & Social Care 

in the Community 15 (4): 306–312.

Bigby, Christine, and Patsie Frawley. 2010. “Reflections on 

Doing Inclusive Research in the ‘Making Life Good in the 

Community’ Study,” Journal of Intellectual and Developmental 

Disability 35 (2): 53–61.

Bigby, Christine, Patsie Frawley, and Paul Ramcharan. 2014a. 

“A Collaborative Group Method of Inclusive Research,” Journal 

of Applied Research in Intellectual Disabilities 27 (1): 54–64.

———. 2014b. “Conceptualizing Inclusive Research With 

People With Intellectual Disability,” Journal of Applied Research 

in Intellectual Disabilities 27 (1): 3–12.

Björnsdóttir, Kristin, and Aileen S. Svensdóttir. 2008. “Gambling 

for Capital: Learning Disability, Inclusive Research and Collaborative Life Histories,” British Journal of Learning Disabilities 36 

(4): 263–270.

Bonham, Gordon S., Sarah Basehart, Robert L. Schalock, 

Cristine B. Marchand, Nancy Kirchner, and Joan M. Rumenap. 

2004. “Consumer-Based Quality of Life Assessment: The Maryland Ask Me! Project,” Mental Retardation 42 (5): 338–355.

Braun, Virginia, and Victoria Clarke. 2006. “Using Thematic 

Analysis in Psychology,” Qualitative Research in Psychology 

3 (2): 77–101.

Burke, Anne, Jane McMillan, Lorraine Cummins, Agnes 

Thompson, Watson Forsyth, James McLellan, Linda Snow, 

Anne Fraser, Mary Fraser, Charity Fulton, Elizabeth McCrindle, 

Lorraine Gillies, Shelley LeFort, Gail Miller, John Whitehall, 

John Wilson, Janet Smith, and David Wright. 2003. “Setting 

Up Participatory Research: A Discussion of the Initial Stages,” 

British Journal of Learning Disabilities 31 (2): 65–69.

Carrick, Rachael, Annie Mitchell, and Keith Lloyd. 2001. “User 

Involvement in Research: Power and Compromise,” Journal of 

Community & Applied Social Psychology 11 (3): 217–225.

Chapman, Rohhss. 2014. “An Exploration of the Self-Advocacy 

Support Role Through Collaborative Research: ‘There Should 

Never Be a Them and Us’,” Journal of Applied Research in Intellectual Disabilities 27 (1): 44–53.

Chapman, Rohhss, and Niall McNulty. 2004. “Building Bridges? 

The Role of Research Support in Self-Advocacy,” British Journal 

of Learning Disabilities 32 (2): 77–85.

Charlton, James I. 1998. Nothing About Us Without Us: Disability 

Oppression and Empowerment. Berkeley, CA: University of 

California Press.

Clements, Karen. 2012. “Participatory Action Research and 

Photovoice in a Psychiatric Nursing/Clubhouse Collaboration 

Exploring Recovery Narrative,” Journal of Psychiatric and Mental 

Health Nursing 19 (9): 785–791.

Conder, Jennifer, Paul Milner, and Brigit Mirfin-Veitch. 2011. 

“Reflections on a Participatory Project: The Rewards and 

Challenges for the Lead Researchers,” Journal of Intellectual and 

Developmental Disability 36 (1): 39–48.

Crawford, Mike J., Dan Robotham, Lavanya Thana, Sue Patterson, 

Tim Weaver, Rosemary Barber, Til Wykes, and Diana Rose. 2011. 

“Selecting Outcome Measures in Mental Health: The Views of 

Service Users,” Journal of Mental Health 20 (4): 336–346.

Davidson, Ann-Louise. 2009. “Community and Residential 

Integration, and Paid Employment Go Hand-In-Hand—

A Collaborative Inquiry,” Journal on Developmental Disabilities 

15 (2): 27–37.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

23

Delman, Jonathan. 2012. “Participatory Action Research and 

Young Adults With Psychiatric Disabilities,” Psychiatric Rehabilitation Journal 35 (3): 231–234.

Dias, John, Malcolm Eardley, Elizabeth Harkness, Louise 

Townson, Chloe Brownlee-Chapman, and Rohhss Chapman. 

2012. “Keeping Wartime Memory Alive: An Oral History 

Project About the Wartime Memories of People with Learning 

Difficulties in Cumbria,” Disability & Society 27 (1): 31–49.

Dowse, Leanne. 2009. “‘It’s Like Being in a Zoo.’ Researching 

With People With Intellectual Disability,” Journal of Research in 

Special Educational Needs 9 (3): 141–153.

Dubois, James M., Brendolyn Bailey-Burch, Dan Bustillos, Jean 

Campbell, Linda Cottler, Celia Fisher, Whitney B. Hadley, 

Jinger G. Hoop, Laura Roberts, Erica K. Salter, Joan Sieber, and 

Richard D. Stevenson. 2011. “Ethical Issues in Mental Health 

Research: The Case for Community Engagement,” Current 

Opinion in Psychiatry 24 (3): 208–214.

Duckett, Paul S., and David Fryer. 1998. “Developing Empowering Research Practices With People Who Have Learning 

Disabilities,” Journal of Community & Applied Social Psychology 

8 (1): 57–65.

Flood, Samantha, Davey Bennett, Melissa Melsome, and Ruth 

Northway. 2013. “Becoming a Researcher,” British Journal of 

Learning Disabilities 41 (4): 288–295.

Gammon, Deede, Monica Strand, and Lillian S. Eng. 2014. 

“Service Users’ Perspectives in the Design of an Online Tool for 

Assisted Self-Help in Mental Health: A Case Study of Implications,” International Journal of Mental Health Systems 8: 2.

García-Iriarte, Edurne, John C. Kramer, Jessica M. Kramer, and 

Joy Hammel. 2009. “‘Who Did What?’: A Participatory Action 

Research Project To Increase Group Capacity for Advocacy,” 

Journal of Applied Research in Intellectual Disabilities 22 (1): 

10–22.

García-Iriarte, Edurne, Patricia O’Brien, and Darren Chadwick. 

2014. “Involving People With Intellectual Disabilities Within 

Research Teams: Lessons Learned From an Irish Experience,” 

Journal of Policy and Practice in Intellectual Disabilities 11 (2): 

149–157.

Hutchinson, Andre, and Andrew Lovell. 2013. “Participatory 

Action Research: Moving Beyond the Mental Health ‘Service 

User’ Identity,” Journal of Psychiatric and Mental Health Nursing 

20 (7): 641–649.

Jurkowski, Janine M., and Amy Paul-Ward. 2007. “Photovoice 

With Vulnerable Populations: Addressing Disparities in Health 

Promotion Among People With Intellectual Disabilities,” Health 

Promotion Practice 8 (4): 358–365.

Kramer, Jessica M., John C. Kramer, Edurne García-Iriarte, and 

Joy Hammel. 2011. “Following Through to the End: The Use 

of Inclusive Strategies To Analyse and Interpret Data in Participatory Action Research With Individuals With Intellectual 

Disabilities,” Journal of Applied Research in Intellectual Disabilities 

24 (3): 263–273.

Maddock, Julia, Deidre Lineham, and Jane Shears. 2004. “Empowering Mental Health Research: User Led Research Into the 

Care Programme Approach,” Research Policy and Planning 22 (2): 

15–22.

March, Justine, Betty Steingold, Susan Justice, and Paula Mitchell. 1997. “Follow the Yellow Brick Road! People With Learning 

Difficulties as Co-Researchers,” British Journal of Learning 

Disabilities 25 (2): 77–80.

Mirza, Mansha, Andrea Gossett, Nathan K.C. Chan, Larry 

Burford, and Joy Hammel. 2008. “Community Reintegration 

for People With Psychiatric Disabilities: Challenging Systemic 

Barriers to Service Provision and Public Policy Through Participatory Action Research,” Disability & Society 23 (4): 323–336.

Morgan, Michelle F., Monica Cuskelly, and Karen B. Moni. 

2014. “Unanticipated Ethical Issues in a Participatory Research 

Project With Individuals With Intellectual Disability,” Disability 

& Society 29 (8): 1305–1318.

Nelson, Geoffrey, Joanna Ochocka, Kara Griffin, and John Lord. 

1998. “‘Nothing About Me, Without Me’: Participatory Action 

Research With Self-Help/Mutual Aid Organizations for Psychiatric Consumer/Survivors,” American Journal of Community 

Psychology 26 (6): 881–912.

Northway, Ruth, Joyce Howarth, and Lynne Evans. 2015. “Participatory Research, People With Intellectual Disabilities and 

Ethical Approval: Making Reasonable Adjustments To Enable 

Participation,” Journal of Clinical Nursing 24 (3–4): 573–581.

Ochocka, Joanna, Rich Janzen, and Geoffrey Nelson. 2002. 

“Sharing Power and Knowledge: Professional and Mental Health 

Consumer/Survivor Researchers Working Together in a Participatory Action Research Project,” Psychiatric Rehabilitation Journal 

25 (4): 379–387.

Paiewonsky, Maria. 2011. “Hitting the Reset Button on Education: Student Reports on Going to College,” Career Development 

for Exceptional Individuals 34 (1): 31–44.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

24

Perry, Jonathan, and David Felce. 2004. “Initial Findings on the 

Involvement of People With an Intellectual Disability in Interviewing Their Peers About Quality of Life,” Journal of Intellectual 

and Developmental Disability 29 (2): 164–171.

Richardson, Malcolm. 2002. “Involving People in the Analysis: 

Listening, Reflecting, Discounting Nothing,” Journal of Intellectual Disabilities 6 (1): 47–60.

Rose, Diana, Jo Evans, Angela Sweeney, and Til Wykes. 2011. 

“A Model for Developing Outcome Measures From the Perspectives of Mental Health Service Users,” International Review of 

Psychiatry 23 (1): 41–46.

Schoeters, Ludo, Patrick Schelfhout, Griet Roets, Geert Van 

Hove, Louise Townson, Rohhss Chapman, and Ian Buchanan. 

2005. “Partnership Working Between University Researchers 

and Self-Advocacy Organizations: ‘A Way Forward for Inclusion?’ 

in England and ‘Fine Feathers Make a Fine Bird’ in Flanders,” 

Journal of Intellectual Disabilities 9 (4): 345–357.

Stack, Erin, and Katherine E. McDonald. 2014. “Nothing About 

Us Without Us: Does Action Research in Developmental Disabilities Research Measure Up?” Journal of Policy and Practice in 

Intellectual Disabilities 11 (2): 83–91.

Stevenson, Miriam. 2014. “Participatory Data Analysis Alongside Co-Researchers Who Have Down Syndrome,” Journal of 

Applied Research in Intellectual Disabilities 27 (1): 23–33.

Telford, Rosemary, and Alison Faulkner. 2004. “Learning 

About Service User Involvement in Mental Health Research,” 

Journal of Mental Health 13 (6): 549–559.

Timmons, Jaimie C., Allison C. Hall, Jennifer Bose, Ashley Wolfe, 

and Jean Winsor. 2011. “Choosing Employment: Factors That 

Impact Employment Decisions for Individuals With Intellectual 

Disability,” Intellectual and Developmental Disabilities 49 (4): 

285–299.

Walmsley, Jan. 2001. “Normalisation, Emancipatory Research 

and Inclusive Research in Learning Disability,” Disability & 

Society 16 (2): 187–205.

———. 2004a. “Inclusive Learning Disability Research: The 

(Nondisabled) Researcher’s Role,” British Journal of Learning 

Disabilities 32 (2): 65–71.

———. 2004b. “Involving Users With Learning Difficulties in 

Health Improvement: Lessons From Inclusive Learning Disability 

Research,” Nursing Inquiry 11 (1): 54–64.

Ward, Karen, and Jordan S. Trigler. 2001. “Reflections on Participatory Action Research With People Who Have Developmental 

Disabilities,” Mental Retardation 39 (1): 57–59.

Williams, Val. 1999. “Researching Together,” British Journal of 

Learning Disabilities 27 (2): 48–51.

Williams, Val, Lisa Ponting, Kerrie Ford, and Philippa Rudge. 

2010. “Skills for Support: Personal Assistants and People With 

Learning Disabilities,” British Journal of Learning Disabilities 38 

(1): 59–67.

Williams, Val, Ken Simons, and Swindon People First Research 

Team. 2005. “More Researching Together: The Role of Nondisabled Researchers in Working With People First Members,” 

British Journal of Learning Disabilities 33 (1): 6–14.
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

25

Appendix: Debriefing Questions 

Session 1 with Testing Trainers/Coordinators

8:30–10:30am (Central); 9:30–11:30 (Eastern)

Led by Katie

1. Introduce yourself (slide has your picture)

2. Ground Rules 

•	 Speak one at a time. 

•	 Speak your name before talking.

•	 When you are done talking, say “done”. 

•	 We will go around the room to get everyone’s 

feedback.

•	 It is ok to skip a question.

•	 There are no right or wrong answers. 

•	 Everyone’s thoughts are welcomed, encouraged and 

valued. It is okay to say how you feel, and okay to 

respectfully disagree with someone else.

•	 What is said in the room, stays in the room (respect 

confidentiality)

•	 Anything else for today’s focus group?

3. Getting consent on recording the session 

•	 Is it okay to audio record the session?

4. Introduction 

•	 Name

•	 What you did for this project

5. Questions

1. Describe how you designed and carried out the 

training and testing so that testers with intellectual 

and psychiatric disabilities could carry out their 

responsibilities and feel respected?

Focusing on the reasons why things were designed and 

carried in a particular way, think about this for:

a. Recruitment and selection of testers, including 

companion testers

b. Training protocol

c. Testing protocol

d. Ongoing support for testers during testing

2. What strategies did you use to effectively, respectfully 

include testers with intellectual and psychiatric 

disabilities? 

a. Strategies used with the group of testers with 

psychiatric disability

b. Strategies used with the group of testers with 

intellectual disability

3. Was there anything that wasn’t working well and got 

in the way of effectively, respectfully including testers 

with intellectual and psychiatric disabilities? 

a. Did you make any changes as a result? 

b. What did you think went well after the changes?

4. Do you think these two groups are/can be good 

testers? Why and/or why not?

5. What did you learn from being a part of this project?

6. If we were going to do testing on a larger-scale, are there 

any different or additional strategies you would use? 

a. Are there any challenges to effectively, respectfully 

including testers with intellectual and psychiatric 

disabilities that you feel you weren’t able to successfully address? 

b. Can you identify any potential solutions to them?

7. Is there anything else you would like to share?

6. Thank you for your participation
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

26

Session 2 with Testers with Intellectual Disability

10:30am–12:00pm (Central); 11:30am–1:00pm (Eastern)

Led by Tia

1. Introduce yourself (slide has your picture)

2. Ground Rules 

•	 Speak one at a time. 

•	 Speak your name before talking.

•	 When you are done talking, say “done”. 

•	 We will go around the room to get everyone’s feedback.

•	 It is ok to skip a question.

•	 There are no right or wrong answers. 

•	 Everyone’s thoughts are welcomed, encouraged and 

valued. It is okay to say how you feel, and okay to 

respectfully disagree with someone else.

•	 What is said in the room, stays in the room (respect 

confidentiality)

•	 Anything else for today’s focus group?

3. Getting consent on recording the session 

•	 Is it okay to audio record the session?

4. Introduction 

•	 Name

•	 What you did for this project

5. Questions 

1. Describe your experience working on this project. 

How does it feel to be part of this project? What have you 

learned? How were you changed?

2. What worked well during the project? What helped you 

be a part of this project? Think about:

a. Training

b. Doing the testing

3. Could you have done the testing without a companion 

tester? How did your companion tester help you?

4. Did you feel respected and that you were able to 

contribute to the project in your role? Give examples of 

each.

5. Did you know who to go to if you had a problem or 

needed help? What happened?

6. What do you think can be done to make this project 

better? Are there any different ways or supports that 

would help you to be a better tester?

7. Would you recommend being a tester to other people 

with intellectual disability? Why or why not?

8. What advice would you give if we were going to do 

this project across the country?

9. Is there anything else you would like to share?

6. Thank you for your participation
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

27

Session 3 with Testers with Psychiatric Disability

1:00–2:30pm (Central); 2:00–3:30pm (Eastern)

Led by Tia

1. Introduce yourself (slide has your picture)

2. Ground Rules 

•	 Speak one at a time. 

•	 Speak your name before talking.

•	 When you are done talking, say “done”. 

•	 We will go around the room to get everyone’s 

feedback.

•	 It is ok to skip a question.

•	 There are no right or wrong answers. 

•	 Everyone’s thoughts are welcomed, encouraged and 

valued. It is okay to say how you feel, and okay to 

respectfully disagree with someone else.

•	 What is said in the room, stays in the room (respect 

confidentiality)

•	 Anything else for today’s focus group?

3. Getting consent on recording the session 

•	 Is it okay to audio record the session?

4. Introduction 

•	 Name

•	 What you did for this project

5. Questions 

Q1. Describe your experience working on this project. 

How does it feel to be part of this project? What have you 

learned? How were you changed?

Q2. What worked well during the project? What helped you 

be a part of this project? Think about:

a. Training

b. Doing the testing 

Q3. Could you have done the testing without a companion 

tester? How did your companion tester help you? 

Q4. Did you feel respected and that you were able to 

contribute to the project in your role? Give examples 

of each.

Q5. Did you know who to go to if you had a problem or 

needed help? What happened? 

Q6. What do you think can be done to make this project 

better? Are there any different ways or supports that 

would help you to be a better tester? 

Q7. Would you recommend being a tester to other people 

with psychiatric disability? Why or why not?

Q8. What advice would you give if we were going to do 

this project across the country?

Q9. Is there anything else you would like to share?

6. Thank you for your participation
ACCESSIBLE & PARTICIPATORY METHODS FOR INVOLVING PEOPLE WITH MENTAL DISABILITIES IN HOUSING DISCRIMINATION TESTING

STUDY OF RENTAL HOUSING DISCRIMINATION ON THE BASIS OF MENTAL DISABILITIES: SHORT PAPER 4

28

Session 4 with Companion Testers

2:30–4:00pm (Central); 3:30–5:00pm (Eastern)

Led by Katie

1. Introduce yourself (slide has your picture)

2. Ground Rules 

•	 Speak one at a time. 

•	 Speak your name before talking.

•	 When you are done talking, say “done”. 

•	 We will go around the room to get everyone’s 

feedback.

•	 It is ok to skip a question.

•	 There are no right or wrong answers. 

•	 Everyone’s thoughts are welcomed, encouraged and 

valued. It is okay to say how you feel, and okay to 

respectfully disagree with someone else.

•	 What is said in the room, stays in the room (respect 

confidentiality)

•	 Anything else for today’s focus group?

3. Getting consent on recording the session 

•	 Is it okay to audio record the session?

4. Introduction 

•	 Name

•	 What you did for this project

5. Questions

1. Describe your experience working on this project. 

How did it feel to be part of this project? What have you 

learned? How were you changed?

2. What do you think about this project is working 

well? What is helping you be a part of this project, and 

specifically to be a companion tester?

3. Do you think you were needed as a companion tester? 

What role did you serve as a companion tester (what did 

you do)? What did you learn about being a good companion tester? Are there any strategies or supports that would 

help you better be a companion tester?

4. Did you know who to go to if you had a problem or 

needed help? What happened? 

5. For those of you have done housing testing before, 

what did you learn about housing testing with people 

with intellectual and psychiatric disabilities? What did 

you bring from your past experience to this project? 

6. What advice would you give if we were going to do 

this project across the country?

7. Is there anything else you would like to share?

6. Thank you for your participation