A broad range of research on the Americans with Disabilities Act (ADA) tracks its progress and impact. Much of the research is inconclusive or conflicting, creating a fragmented evidence base about the ADA's effectiveness as a social policy. In response, academic researchers and disability organizations have called for an extensive review of the existing research. To address this fragmentation, the University of Illinois at Chicago has begun a five year project systematically reviewing the ADA research as part of the ADA Knowledge Translation Center at the University of Washington. This article reports results from year one of the project, the scoping review, that will assist in identifying a research plan to inform policy and practice.
Introduction
The Americans with Disabilities Act (ADA) is the cornerstone of US civil rights policy for people with disabilities, and the primary legislative tool for ensuring their full and equal treatment as citizens. The legislative intent of the ADA is to protect against institutionalized and structural discrimination while simultaneously fostering social inclusion across all domains of public life (National Council on Disability [NCD], 2005). The legal framework of the ADA builds upon early rights legislation including Section 504 of the Rehabilitation Act and the Civil Rights Act of 1964 to create a unified policy that offers civil rights protections to people with disabilities. There is a broad catalogue of literature on the ADA that seeks to understand how the policy has followed the course of this philosophical and legislative pursuit.
Social science research on civil rights policies and movements is often used to monitor implementation goals, and to understand problems in applying policy to practice (Hahn, 1993). The diverse research on the ADA however, has not been fully applied in this manner. Aside from studies on hiring rates and the legal data available from the U.S. Department of Justice, much of the commonly cited research is anecdotal or descriptive and not necessarily useful for many policy players in its current form (Burns & Gordon, 2010; NCD, 2007b). Although there is a vast body of research evidence on the ADA, scholars argue that much of research evidence is not utilized and policy stakeholders are unable to fully assess the ADA's impact (Vierling 2006, Blanck 2006). Significant information gaps about the ADA's impact as a social policy still exist more than 20 years after its implementation.
Contributing to this knowledge gap is the lack of an exhaustive review and analysis of the diverse body of research that analyzes the ADA's impact. Previous reviews and assessments of ADA evidence have concluded that it is vital to conduct a systematic assessment of the full body of existing research to determine what evidence exists that is of use for policy and practice (i.e. Collignon, 1997; Schwochau & Blanck, 2000). However, this call to further systematic assessment has not been met at the national level or in a way that covers the full breadth and depth of the ADA (NCD, 2007a). To date there has not been a comprehensive synthesis of the wide range of research and scholarship for it to be more applicable and useful for various ADA stakeholders.
To address the need for a systematic assessment of existing research, the University of Illinois at Chicago is conducting a five-year review of the ADA as part of the National Institute on Disability and Rehabilitation Research (NIDRR) funded ADA National Network Knowledge Translation Center at the University of Washington. The project was developed in response to a call by NIDRR to "increase the use of available ADA-related research findings to inform behavior, practices, or policies that improve equal access in society for individuals with disabilities." UIC addresses this call through a multi-stage systematic review that includes: (1) a scoping review of how the ADA has been studied to map the literature landscape; (2) a rapid evidence review to refine priorities and analyze selected topics for preliminary assessment of the research; and (3) systematic reviews to synthesize research and answer specific key questions in the area. We will use these reviews and syntheses to create a foundation of knowledge, inform the subsequent policy, research and information dissemination, and contribute to the overall capacity building efforts of ADA Regional Centers. Together, these reviews will identify a future plan for research that spans core ADA research topics, methodological approaches to ADA-related research and potential outcomes to inform policy and practice, and positively impact on ADA stakeholders. To date, no systematic reviews have been conducted in this area. This article details the activities and findings from stage one of the project, a scoping review of the ADA. It discusses the broader implications of the scoping review findings in relation to understanding emerging issues of disability policy and future ADA research.
Background and Challenges to Assessing the ADA's Impact
The significance of the ADA as a social policy is that it provides the most complete structure for advancing civil rights of people with disabilities to date (Yee & Golden, 2001). The ADA's impact on reshaping our system of rights also reflects a monumental symbol of social change. Title I of the ADA provides the law's overall intent and four goals to ensure rights for people with disabilities: equal opportunity, full participation, independent living, and economic self-sufficiency (Americans with Disabilities Act, 1990). In practice, the four goals of the ADA are carried out through the legal framework that seeks to break apart physical barriers and prevent discriminatory attitudes. This framework is indicative of a growing trend in US political systems that reshapes the protection of needs for people with disabilities as a matter of civil rights (Scotch 2001). The creation of the ADA marked a great advancement in disability rights by expanding upon legislation to formulate a cross-issue policy to defend civil rights for people with disabilities across all domains of social living.
Along with the significant social advancement, there has been persistent debate regarding the extent that the ADA has fully achieved its goal of incorporating people with disabilities into the civil rights framework. Although there has been criticism that the ADA has not reached the full population imagined to be within the scope of the framework, disability policy specialists largely agree that the ADA has been successful in enhancing people with disabilities' legal protections since its implementation (Blanck, 2006; Rulli & Leckerman, 2005). Additionally, scholars and stakeholder groups assert that the policy has had relative success in addressing various issues of structural inaccessibility (Travis, 2008; Yee & Golden, 2001). In spite of these advances, there are also arguments that the ADA has fallen short of its implementation goals because the population of people with disabilities continues to be excluded from much of mainstream society and is less likely to have access to various social events, paid labor, healthcare, and education (NCD, 2007a). More telling perhaps is the opinions of people with disabilities themselves. A recent survey of individuals with disabilities conducted by the National Organization on Disability (2010) found that a majority (61%) of people surveyed indicates that the ADA had made no difference in their lives.
The differing accounts of the ADA's overall impact are replicated throughout much of the most cited data on the ADA. For example, a prevailing opinion of the ADA's employment impact was that it may have had a detrimental effect on the employment rate of people with disabilities due to factors such as employer concerns over costs associated with hiring, firing, and accommodation (i.e. Acemoglu & Angrist, 2001; DeLeire, 2000). However, recent data further complicates this conclusion and is used to argue that other confounding economic and political factors are more attributable to the reduced employment of people with disabilities (i.e. Donohue, Stein; Griffin, & Becker, 2011). This disagreement about the ADA's impact on employment provides only one of the most commonly cited examples of the ongoing and unresolved debates amongst research findings. There is similar uncertainty about the impact of the ADA across many of the areas that the law impacts (NCD, 2007b).
There are multiple characteristics about the existing evidence that make it difficult to assess the full impact of the ADA. Some widely noted factors include the lack of persistent and ongoing data collection, the fragmentation of evidence, and the heterogeneity of existing research. The NCD (2007a) explains one of the largest deficits of the current body of ADA research, where "there is a surprising absence of any ongoing, systematic data collection about the ADA from any source, and the result is significant knowledge gaps about many aspects of the impact of the ADA." With these knowledge gaps and the lack of unified data collection mechanism, policymakers and other involved stakeholders must look at alternative sources of information to fully understand the policy's impact. Federal disability policy players (see NCD, 2007b) and researchers (e.g. Hoffman, 2008; Silverstein, 2010) have both called for summative review of existing research to fill in the gaps due to the lack of ongoing data collection.
A second challenge in assessing the impact of the policy is that much of the ADA evidence does not come in the form of longitudinal data but is instead scattered or fragmented across a range of data sources. Evidence on the effects of the disability policy is fragmented in that it covers a myriad of topics, research questions, and stakeholder groups but is not necessarily reduced to directly quantifiable outcomes of the policy itself (see Silverstein, 1999). Research evidence across a gamut of published and unpublished literature can provide vital information to lay foundation for future policy research, but requires comprehensive review and exploration of the relationships between study characteristics and other contextual factors (Rumrill, Fitzgerald, & Merchant 2010). Studies related to ADA research can be found in academic databases, books and book chapters, theses, websites, think tanks, government departments, disability and other stakeholders' agencies, and ADA Regional Center. Each of these data sources present vital information for better understanding the impact of the ADA but have not yet been synthesized to provide a holistic account of the research findings.
A final challenge in reviewing this wide range of data is the heterogeneity of topics and methods used to analyze the ADA's implementation and impact. Common review techniques in social policy that focus on health or medicine answer very narrow questions and are often limited to studies testing directly observable impacts of a policy or intervention (Littell, Corcoran, & Pillai 2008). However, systematic reviews based on social science research draw on a greater diversity of research questions that use a range of research approaches and interpretation involves more political or value-based ideas than is found with traditional interventionist research (Witherspoon, 2003). This is true for ADA-related research, which consists of studies that address a myriad of areas, including: social movements, rights and participation (e.g. Scotch, 2001); legal and economic issues (e.g. Bagenstos, 2009); socio-political discourse and cultural values (e.g. Batavia & Schriner, 2001; Hahn, 1996); stakeholder perspectives and experiences (e.g. NOD, 2010); and issue/title based topics such as employment (e.g. Silverstein, Julnes, & Nolan, 2005), education (e.g. Colker, 2009), health (e.g. Crossley, 2000), and technology (e.g. McNaughton & Nelson Brye, 2007). The heterogeneity in both method and content of ADA-related research requires an inclusive and innovative approach to research synthesis in order to effectively explore the full breadth and depth of research on the effects of the policy.
Methodology
This systematic review project seeks to increase the utility of the research and to generate summative conclusions from the existing research evidence. The first stage involves conducting a scoping review of the research evidence. 1 The primary purpose of a scoping review is to provide a broad overview of the current research on a topic, and to document key components of the research in order to identify specific gaps and key research needs based on the existing research evidence. Other scoping reviews in disability provide guidance on how to improve policy implementation and provide summative overviews of existing evidence to direct future research (i.e. Boeltzig, Pilling, Ciulla Timmons, & Johnson 2010; Rumrill et al. 2010).
Systematic review projects of policy research often engage with key experts in the field for guidance and stakeholder input to ensure a thorough and relevant body of research is located (Arksey & O'Malley, 2005). The research team formed an ADA Expert Panel committee to work with the research team for the duration of the project. It includes representatives from the NCD, the Disability Rights Education and Defense Fund (DREDF), the ADA National Network, Mathematica Policy Research Group, the US Business Leadership Network, various universities, and other pertinent organizations. The Expert Panel input is used to develop research questions, refine research topics and priorities, verify synthesis to identify emerging issues and data gaps, and assist with the dissemination and translation of findings across different stakeholder groups.
The research questions guiding the scoping review were developed by the research team in conjunction with the ADA Expert Panel, with member-checking with disability consultants serving as key population informants. The primary research question is: "What English-language studies have been conducted and/or published from 1990 onwards that empirically study the Americans with Disabilities Act?" The secondary questions are:
- What is the source of the information?
- What disability and stakeholder subgroups are represented in the literature?
- What topics and titles are represented in the literature?
- What methodologies and research designs are represented in the literature?
The questions were kept intentionally broad at this stage of the project in order to understand and assess what has been studied.
The final inclusion criteria consists of citations to all records identified as examining the ADA by a literature search using the following parameters: (a) published or dated from 1990; (b) be written in English; (c) have been carried out in the United States; (d) relate to the ADA and (e) be based on published studies reporting the gathering of primary or secondary data or the collating and synthesis of existing information to answer ADA-related research questions. Items that are not included in the initial scoping review are established facts about the ADA (i.e. court-case decisions, technical materials on compliance, general fact sheets), opinion pieces (i.e. by various stakeholders, lawyers or academics), and anecdotal evidence. The inclusion criteria are broad, as the topic of study is broad.
Process
The first stage of the scoping review process involved locating all of the potential sources of ADA research evidence. The process entailed identifying key databases to access pertinent research records and locating, screening and selecting records based on the inclusion criteria. These databases include a wide range of academic journals that were potentially relevant to the research project. Additional steps were taken to locate the full scope of ADA research, which includes a variety of difficult to locate and grey literature. Due to the nature of grey literature (not published by mainstream publishing clearinghouses, independently published records/reports from agencies, or fully unpublished), alternative search methods were also employed drawing on several different search strategies. These methods include utilizing the primary researchers' knowledge and familiarity with the research evidence; communicating with the network of researchers involved with ADA research; cross-checking bibliographies; and collaborating with the Expert Panel to locate hard-to-reach-studies and confirm saturation. Key organizations were contacted and the expert panel members submitted relevant research from their respective constituent groups. Using these different strategies, the initial search criteria yielded 34,599 records. This included:
- 26,371 records from Academic databases.
- 6,975 records from the Worldcat library of grey literature items.
- 1,253 records provided from the National Rehabilitation Information Center (NARIC). 2
Records were scanned for initial eligibility and key article information (i.e. journal, title, date, authors, abstracts) was saved to an online bibliographic citation management system (RefWorks). The initial exclusion criteria was used at the point to exclude all research that did not state a research purpose directly "related to the ADA" as dictated by our original search parameters. We located all potentially relevant research by screening the title, abstract, and introduction/methods section if necessary.
The initial screening and selection process reduced the number of records from the initial 34,599 to 3,351 records that were identified as potentially relevant ADA research that required data extraction (see next section). This number included both retrieved academic literature and grey literature that had been preliminarily identified as potentially meeting the initial inclusion criteria. Also included in this group were legal documents (i.e. legal or policy analysis that indicated an ADA-related research question) and books/other grey literature that had been scanned but not yet fully vetted for inclusion/exclusion.
Two secondary reviewers conducted a final screening and examined the 3,351 records for meeting the full inclusion criteria. At this point, the remaining records were screened for inclusion based on the criteria that they were published or unpublished studies reporting the gathering of primary or secondary data or the collating and synthesis of existing information to answer ADA-related research questions. Duplicate records and records that did not posit research questions directly related to the ADA were excluded at this point of the screening process. At this point 960 of the 3,351 records were excluded because they did not answer ADA-related research question by gathering primary or secondary data or collating and synthesizing existing information. Also at this point of the screening legal analysis that fit outside the scope of this project and organizational or governmental reports that spanned multiple topic areas were saved for future reviews because they could not easily be coded due to their expansive coverage of multiple ADA issues. These records do contain relevant data and information regarding the ADA that may be useful in the later stages of this project (See limitations section). 1,417 legal research records and 37 organizational reports were saved for future review at this time. After this final screening, 980 records were confirmed as meeting the criteria for inclusion in the scoping review. These 980 records spanned across various grey literature sources (primarily unpublished dissertations and student papers) and across 321 different journals that revealed relevant literature.
Figure 1 below provides a visual representation of the decision processes that were used to finalize the selection of 980 pertinent research records.
Click to view enlarged figure.
From the selected 980 potentially relevant records we proceeded to the data extraction stage of the scoping review process. Key information points from the academic record abstracts were electronically extracted and entered into a formal spreadsheet document. This included basic record information, as well as information related to the research questions (e.g. topic of research, stakeholders involved, research design, etc).
After data extraction a list of coding categories and sub areas was developed collaboratively by the research team and input from the Expert Panel (see Appendix A for a full listing of the codes). Codes were assigned to each record primarily from quotations within the abstract (and/or introductions if insufficient detail was provided in the abstract) and the records were then placed into categories. The initial listing of potential codes was refined based on a secondary review of the initial extraction and expert panel input. Additional codes were generated directly from the quotations and summary statements created during the first stage of the data extraction process that could be used to categorize and sort the different research records. When quotations were unavailable, summary statements or descriptive keywords were created by the reviewers and used to generate appropriate codes for the research record. This coding process, often referred to as mixed coding, involves building from pre-defined concepts about a topic area to explore other potential topic areas that emerge from the literature (Gough, Oliver, & Thomas, 2011). Using the coding sheet, a second reviewer re-examined the initial data entry and cross-checked it against the abstract. This process allowed for an abbreviated check to enhance the inter-rater reliability of the initial data entry and to confirm the categorical codes.
The final stage of the scoping review process is descriptive analysis and synthesis of the data. This was completed using a descriptive numerical summary (e.g. overall number of studies included, types of study design, topics and/or titles studied, characteristics of disability sub-groups and/or stakeholders, years of publication). The frequency that different research design elements occur in ADA research was calculated to provide an overview of the most common approaches to studying the ADA.
Results
The final search yielded 980 separate research records on the ADA. The results have been descriptively analyzed and synthesized into the following categories: record type, stakeholder groups, topics, and research methods. The following section provides results and details of the records that met all of the scoping review inclusion criteria.
Record Type
Record type refers to the source of the literature and the different types of records that were gathered (Refer to Figure 2). The main source of literature that met the inclusion criteria was academic journal articles, specifically the Journal of Vocational Rehabilitation (31 articles); Work: A Journal of Prevention, Assessment, and Rehabilitation (26 articles); the Journal of Disability Policy Studies (26 articles); the Journal of Rehabilitation (17 articles); and the American Journal of Occupational Therapy (20 articles) where the majority of ADA research has been published to date.
Stakeholder Group
The stakeholder group pertains to the research participants and/or subject of the research study. We identified eight main stakeholders (refer to Table 1). The majority of research focused on people with disabilities, followed by business/employers. Families/advocates were the least researched.
Table 1 |
||
Stakeholder Group |
Frequency (number of records) |
% |
Business/employers |
157 |
16.1% |
Education |
100 |
10.3% |
Families/Advocates |
11 |
1.1% |
Government / policy makers |
19 |
1.9% |
*Industry specific |
57 |
0.9% |
People with Disabilities |
555 |
56.9% |
People without Disabilities |
7 |
0.7% |
Practitioners/Service Providers |
6 |
7.4% |
Total |
975 |
100% |
Note. 107 studies included two or more stakeholders. 112 records did not have a primary stakeholder group and were either theoretical or architectural design/compliance related studies. *Industry specific includes professionals in areas such as transportation, law, public safety etc. |
||
Topics
We identified 16 main topics and a number of different sub-topics (refer to Table 2). The clear majority of research (about half of all studies identified in the scoping review) on the ADA relates to employment, specifically as it relates to the prevalence of discrimination and harassment. While most of the topics have 17 or more records, there were a group of topic areas that have been less studied in comparison to the other major topics. These include: childcare, emergency preparedness and response, and voting.
Table 2 |
||
Topic area |
Frequency (number of records) |
% |
Accessibility, compliance, and design |
106 |
10.9% |
ADA's interaction with other policies |
3 |
0.3% |
Child care |
5 |
0.5% |
Community/independent living |
9 |
0.9% |
Criminal justice system |
7 |
0.7% |
Definition of disability |
7 |
0.7% |
Education |
160 |
16.3% |
Emergency preparedness/response |
5 |
0.5% |
Employment |
499 |
50.9% |
Health/healthcare |
50 |
5.1% |
History/historical process |
6 |
0.6% |
Media coverage and public perception |
6 |
0.6% |
Philosophical Underpinning |
11 |
1.1% |
Policy implementation/process |
38 |
3.9% |
Self advocacy/empowerment |
5 |
0.5% |
Transportation |
60 |
6.1% |
Voting |
3 |
0.3% |
Total |
980 |
100.0% |
Sub-topic issues: The top five topics that were researched (employment, education, accessibility and compliance, transportation, health) were additionally analyzed into the key ways in which the sub-topics were studied (refer to Table 3). There were a number of different issues explored within each topic area. However, a number of these issues were studied across topic areas — the most common being compliance rates (263 records); attitudes and knowledge about people with disabilities and the ADA (131); barriers/facilitators to implementation (77); and costs (37).
Table 3 |
||||
|
Sub Topic Issues (number of records) |
|||
Topic Area |
Attitudes and knowledge |
Barriers/facilitators |
Compliance rate |
Costs |
Employment |
80 |
43 |
154 |
26 |
Education |
36 |
8 |
29 |
2 |
Accessibility & Compliance |
2 |
7 |
66 |
1 |
Transportation |
2 |
9 |
8 |
8 |
Health |
11 |
10 |
6 |
0 |
Total |
131 |
77 |
263 |
37 |
Research Methods
The research evidence on the ADA includes a wide range of methodologies and research designs to study the policy's effects and implementation. The research was categorized into four primary categories: qualitative, quantitative, theoretical/policy analysis, and mixed methods (refer to Figure 3). Almost half of all the research on the ADA is quantitative.
Discussion and Conclusions
The results from studying each of the key areas in the scoping review (method, topics, subtopics, and stakeholders) suggest the need for future inquiry in seldom-researched areas as well as expansive analysis in the areas for which we have more thorough and substantive evidence. Initial scoping review findings provide a baseline assessment of the evidence available to answer more specific research questions often by aggregating study components (Arksey & O'Malley, 2005). The number of studies included for each area of inquiry does not entirely dictate suggestions for research and analysis in the suggested areas. The initial synthesis and ensuing suggestions for future research were generated through a process meant to promote the credibility and utility of the scoping review findings including stakeholder feedback (Keown, Van Eerd, and Ervin 2008), synthesis of the research questions asked and how they were approached (Rumrill et al., 2010), and comparison of the findings to existing descriptive accounts of evidence and the factors critical to assessing impact (Arksey & O'Malley, 2005). These results are useful for providing a broad descriptive overview of the state of ADA research.
Future analysis in the systematic review project will closely examine the variation in approach and findings that are arrived at using different methods and research designs. We found that the majority of existing research on the ADA is quantitative, followed by theoretical/policy analysis. The lack of qualitative evidence partly speaks to the need for more studies of this type. This need is additionally suggested because exploratory accounts offered from studies of social phenomena such as cultural perceptions and portrayals of the ADA and disability (e.g. Haller, 2000; Soffer & Rimmerman, 2012) provide evidence regarding the impact of policy on the lived experience of people with disabilities but are often overlooked in policy decisions and reviews (Silverstein, 1999). Phenomenological and exploratory research of this type is most commonly approached using qualitative or mixed-methods research designs (Mertens, 2010). New research on the ADA using these methods can offer a heightened understanding of various underlying contextual factors that impact policy implementation and enforcement.
The need for new directions in research approaches is supported by previous calls to explore complex research questions to which national data sets have been unable to provide substantive evidence. The existing evidence from national data sets is primarily useful to explore correlation effects of the ADA's implementation, but is less useful to explore rationale or contextual analysis of reason for such effects (Schalock, 2004). A prominent critique of the existing ADA evidence base is that policy makers and researchers may overestimate the predictive capability of existing national data sets by trying to simplify complex social implications of policy into cause/effect relationships (Silverstein, 1999). Qualitative research is useful to more thoroughly explore complicated phenomena and clarify on conflicting or discordant conclusions about the impact of social policy (Mertens, 2010). Where we see disagreement and fragmented results amongst the quantitative studies, qualitative research will provide a more analytical and exploratory account of ADA implementation.
In addition to analyzing the methodological approaches, analysis of the multitude of people impacted by the ADA also can inform future analysis. In terms of stakeholders (i.e. either as participants in the research studies, or as the subject of the research), the main focus of ADA research has been on people with disabilities and business/employers. While neither of these findings is particularly surprising, a more detailed account of how these groups have been approached within the research will tell us more about research directions and gaps in findings. Although people with disabilities are frequently the target of ADA research, it is still not clear how and which communities with disabilities have been approached. Retrieving this information was beyond the scope of the initial stage of this project because research abstracts and introductions often do not yield apt population description for analysis.
The call for further detailed exploration of the involved stakeholders is supported by previous research that has purported less benefits of the ADA for people with heightened disabilities including various mental disabilities and people from ethnic/cultural minority backgrounds (e.g. McMahon & Shaw, 2005). Furthermore, after reviewing the initial scoping review findings, Expert Panel members requested further clarity and detail of the different communities involved in the existing evidence as a priority area for understanding ADA research. This desire reflects the notion that it is important that the views and opinions of people with disabilities are integrated into ADA research given the historical trend that research and policy decisions have often been on behalf of people with disabilities instead of by them (Scotch, 2001).
In addition to defending the rights of the people with disabilities, the ADA also impacts numerous other stakeholder groups. Besides employers, other groups such as disability service providers, families and associates of people with disabilities, health care workers and many industry professionals are impacted by and are a part of the ADA's implementation. However, many of these groups are inadequately represented in the literature. One of the most noticeable gaps is the very small pool of research specifically about family and advocates of people with disabilities. This group represents an additional gap that will require additional attention in relation to the ADA, especially as housing and support policies continue to shift away from the state to families and the community (see Rizzolo, Friedman, Lulinski-Norris, & Braddock, 2013). Research concerning this stakeholder group spans many topic areas, including the developing discussions of care and aging. The challenges of providing care for people with disabilities can have adverse effects on aging family members or other caregivers when there are inadequate services and state support — particularly those from low-income or minority backgrounds (Yamaki, Hseih, & Heller, 2009). This is of particular concern as households with people with disabilities are commonly poorer and the primary income earners are older than in nondisabled households (Fujiura, 2010). The intersection of the existing ADA policy frameworks with the area of family care and aging is just a snapshot of the many emerging policy issues that concern families and advocates of people with disabilities. There has been minimal research that discusses the intersection of family policy and the ADA even with emerging trends and concerns for the well being of this stakeholder group.
While critical stakeholders and subtopic areas that are vastly important to the changing landscape of national disability policy remain understudied, some topic areas have been at the forefront of ADA inquiry since the policy's inception. The main ADA topic studied has been employment, particularly as it relates to discrimination and harassment. These findings further support previous academic claims about the existing research evidence about the ADA. For example, previous theoretical analysis has argued that the ADA is overanalyzed in relation to the impact of Title I on the employment rate of people with disabilities (e.g. Waterstone, 2005). This body of research primarily discusses limitations of the ADA's impact in relation to the court's actions and not other social institutions. These findings posit multiple theoretical questions and directions for the future of the field and review of the ADA. First, with this large body of research can we make empirical claims on the ADA's effectiveness in this area? Secondly, although the ADA covers many domains of social living, why is it so overwhelmingly analyzed in relation to employment? Questions of this sort will be explored in greater detail during the course of this study.
As well as a broader analysis of the often-studied topic areas, future ADA research needs to explore often discussed areas that have little research evidence. Critical topic areas that have clear policy implications for people with disabilities remain under synthesized. For example, emergency preparedness has virtually no empirical research on its relation to the ADA. At first glance, this is not surprising as the federal government and other policy organizations have overwhelmingly neglected people with disabilities from emergency preparedness initiatives and policies (Waterstone & Stein, 2006). Various agencies and governmental organizations such as the NCD increasingly are developing policy suggestions to better include people with disabilities in emergency planning (see for example NCD, 2009). What is surprising is that these policy suggestions and large-scale organizational reports have not resulted in subsequent research investigating the impact of the ADA in this area. Although emergency preparedness and disaster management are pressing policy issues, the intersectional analysis of emerging policies with the ADA is seldom explored. This area will require further attention given the increase in natural and other emergencies that require better policy responses.
Additional findings related to underexplored research areas are puzzling both due to their importance in relation to the ADA and the large pool of unutilized data in their areas. For example, the limited research on the ADA and housing is also surprisingly low, particularly when there is access to longitudinal data in this area (e.g. State of the States on Developmentally Disabilities and other related projects). However, only a small amount of research asks how the ADA specifically has impacted housing. Further, there is a dearth of information of how the ADA has impacted the civic engagement of people with disabilities. Similar to the area of housing, large pools of longitudinal data exist that track progress in relation to issues such as voter turnout (e.g. the Harris Poll and various institutional reports that make use of their data sets). There has been limited use of this data in the analytical and academic research on the ADA reviewed for this project.
Limitations and Next Directions
The initial results have many broader implications for the future study of the ADA regarding information gaps and common approaches to inquiry. While initial findings indicate an uneven amount of research across the areas the ADA impacts, it is important to reiterate that a disproportion of research in certain topic areas does not inherently connote information gaps. A limitation of the initial stage of this review is that the methodological approach to draw information only from single-topic research records and non-legal data does not yet allow for an exhaustive summary of existing research. For example, the review of literature on topics such as housing and civic engagement primarily reflects findings with academic reports and is partly indicative of the limitations of the methodical approach because large scale organizational reports spanning multiple topic areas, including voter turnout, were excluded from the scoping review (i.e. National Organization on Disability 2010). It was not possible to obtain an adequate description of such literature due to reporting structures and the time constraints of reviewing the vast amount of ADA research. This decision was methodologically justified because the conclusions drawn from scoping reviews often are primarily useful to direct future research and analysis and do not provide comprehensive overview of research findings (Rumril et al., 2010). Evidence from large-scale reports on the ADA contain vital evidence but do not necessarily contain detailed reporting of components of factors that are commonly used to gauge relevance in scoping or systematic review such as methodologies, research questions, and population descriptors. Further analysis of these sources of ADA evidence will provide a more comprehensive analysis of the ADA in the future.
The disproportion of research devoted to some topics suggests further analysis comparing gaps to ADA research goals and implementation plans, many of which will be detailed in cross-topic reports that are included in further stages of this research. In addition to drawing from the existing bank of ADA evidence, it has been suggested that comprehensive understanding of the ADA's impact will benefit from comparing findings and information gap to those identified in previous assessments of other civil rights policies (see Scotch, 2001). Evaluation of the ADA's impact can take into account the political and social change that is reasonable to expect to be within the reach of civil rights statutes based both on experience from previous laws and the ADA's goals.
Moving forward, there is a need to generate synthesized data through rapid evidence and systematic reviews that will provide a better grasp of the full range of evidence available in specific topic areas. The inclusion of national reports will provide a vital source of evidence to indicate thematic trends of the ADA to identify assumptions and conclusions commonly assessed about the ADA's impact. Analysis over the course of the five-year systematic review project will additionally generate more specific summative evidence regarding the effects of the ADA on implementation in key policy areas.
In discussions with the ADA Expert Panel and other relevant stakeholders (i.e. Directors of ADA Regional Centers), specific research priorities that have been identified based on the results of this study included questions pertinent to employment, healthcare, education, compliance/accessibility, and assistive/information technology. These are deemed to be critical areas of importance where systematic reviews of the research will provide substantive evidence on the effects of the policy to illuminate its strengths, weaknesses, and research gaps. In turn, this will help all stakeholders increase the use of available ADA-related research findings to inform policies and practices that maximize the full inclusion in society for individuals with disabilities.
References
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Endnotes
- Additional detail of the broader systematic review project methodology is available in a forthcoming publication by the same authors.
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