“Disability and Public Health: From Advocacy to Action and Everything in Between”

Gloria Krahn, PhD, MPH

Vincent A. Campbell, PhD
APHA Disability Chair’s Forum, November 2009

 

This 21st birthday of the “new view” of disability and public health is an appropriate time to reflect on the relatively short history of public health addressing the health of people with disabilities—where we’ve been, where we are, where we’re going.   While public health has a long history of preventing disabilities, the new view addresses health of people who have disabilities.  Beginning from a place that could be described as one of mutual distrust and disrespect between the disability and public health communities, we have witnessed growing and reciprocal appreciation of the expertise and perspective of each other.  The disability community has brought organized advocacy and emphasis on relevance to this field, while public health has brought the skills of surveillance, research and intervention. 

This paper explores how these two communities have shaped the development of a new disability and public health approach and suggests some future directions for this new and dynamic field.  We begin from the presumption that the historical public health perspective on disability is evolving to one of full inclusion of people with disabilities as legitimate and valued participants. Drum, Krahn, Peterson, Horner-Johnson & Newton (2009) recently outlined three perspectives of disability within public health.  These perspectives begin with a traditional public health model of prevention of disabilities, a contemporary model that regards people with disabilities as a minority group, and finally, an emerging model based on a social determinants view that is more inclusive of disability as part of the general population that may be at increased risk for poor health outcomes.  We suggest that the emerging model extends beyond examining differences between people with and without disabilities (disparities) and considers disability as one of multiple social determinants of health associated with health, quality of life, and social participation.  These models are presented below. 

See Figure 1

The public health process is often portrayed as a circular interplay of surveillance leading to research that, in turn, leads to intervention and comes back to influence surveillance.  Not included in this model, however, is the critical role of advocacy.  Advocacy and the political process have been critical in establishing a place for disability within public health.  It has provided the energy and issues to activate and provide directions for this process, much like the force of the wind powering a windmill.  And while advocates might prefer to see more action occurring immediately, public health requires the methodical application of science before proceeding to interventions. Public health provides the “in between” steps of detection, description and understanding from advocacy to action.  

See Figure 2

Advocacy

          Historically, advocacy was essential in bringing public health’s attention to the experiences of people who live with disabilities.  This is a population that was largely invisible, and advocacy was instrumental in changing a public health perspective from primarily regarding disability as the failed outcome of a public health prevention to recognizing disability as a natural part of the human experience.  In so doing, advocacy brought attention to the responsibility of public health to promote health and reduce disparities experienced by people with disabilities. 

Advocacy on behalf of disability issues has drawn on multiple arguments.  Some arguments were based on economics, justifying expenditures as investment in reducing subsequent health costs.  Other arguments were grounded in a civil rights approach that appealed directly to the social justice foundation of public health.  Since 1990, many advocacy arguments have referred to the legal rights afforded through the Americans with Disabilities Act. Advocacy’s armamentarium of approaches has always included legal action, and law suits have been an important method to effect dramatic social changes for people with disabilities.  The potential for legal action brings needed balance of power between the disability and public health communities and contributes to the tensions between them.

Importantly, advocacy led to the conceptual differentiation between disability and poor health—that persons could have a disability and also be healthy.  This was a ground-breaking shift in perspective, with a formal declaration embodied in the Surgeon General’s Call to Action in 2005 (USDHHS, 2005). Its roots are documented in the first publications describing the importance of preventing secondary disabilities and complications (later termed secondary conditions) and promoting health for people with primary disabilities (Marge, 1988; Houk & Thacker, 1989).  Advocacy continued to play a vital role in how disability has advanced within public health.  Advocacy has consistently identified areas where public attention and resources needed to be directed.  While some might prefer to believe that public health policy is driven by data, the topics and populations for data collection are often largely determined by advocacy and reports of the lived experience. 

Awareness through Surveillance

Data is essential in public health—in public health “if it isn’t counted, it doesn’t count”.  While advocacy is important for bringing attention to an issue, public health awareness of a problem requires data.  Surveillance of population health is a core public health function that produces this data—the beginning of the cycle of the public health functions.  The National Health Interview Survey—Disability supplement of 1994-5 (NHIS-D) provided an initial treasure trove of disability and health data that is still being mined through research analyses.  The Behavior Risk Factor Surveillance System (BRFSS) added a module on disability in 1998, and subsequently replaced this with the addition of disability identifier questions to the core survey in 2001.  The BRFSS capacity for state-specific data affords information about more localized comparisons, allowing for more targeted solutions, and stronger arguments for action by advocates.  An interactive web-based surveillance report on differences between persons with and without disabilities for all BRFSS items is scheduled for release by CDC in fall, 2010.

          The past ten years could be characterized as the decade of disability data.  For the most part, these are imperfect data because of their cross-sectional nature that shed little light on cause, duration, or permanence. Despite these shortcomings, the data have brought compelling awareness to the health differences and disparities experienced by people with disabilities. A primary use of these data has been to describe the population and to highlight disparities between people with and without disabilities in health status, health care access, health risk behaviors, and health promotion opportunities.  The growing awareness of disability needs within public health are reflected in publication of a separate chapter on disabilities in HP2010, two Surgeons General reports (2002, 2005), and the recent Institute of Medicine report The Future of Disability in America (2007).  A number of future directions for surveillance are immediately obvious (see also McDermott, this session).  A most immediate challenge for improving the accuracy of disability knowledge relates to the “disability identifier” questions.  Different surveys use different identifiers that result in different prevalence estimates (see e.g., Adams, et al, 2009). While different criteria may be reasonable in determining eligibility for different service programs, they create discord among researchers and challenge the credibility of disability statistics held by the general public.  Is the real size of the disability population 49 million, 54 million, or something else?  While most national surveys now rely on some variation of a functional limitation to define disability, they differ in specific questions used and in who is identified as having and not having a disability.  For the past decade, HP 2010 Objective 6.1 has called for use of a standard definition for disability.  This has not been resolved, and should be a top priority in the coming year.  Another pressing need is health surveillance of people with intellectual disabilities.  This subgroup of the population may be among the most vulnerable of our citizens, but is largely excluded from national surveys, and when included, cannot be identified among the respondents.  We are currently at a place where the US does not have a consensus data source to determine and track the health status and health care of this population.  The CDC is currently initiating attention to this issue.

Accuracy in Knowledge

          The next phase of the public health process is conducting research to improve understanding of the distribution, parameters and determinants of health problems.  A casual perusal of the program content of the APHA Disability Section suggests a gradual shift in topics for presentations from surveillance and monitoring to health promotion.  Targeted efforts were made to improve the quality of research presented in the Disability Section at the annual APHA conference.  In 2005, this Disability Chair’s Forum was devoted to presentations on emerging methods to improve the quality of disability research.  Research methods from social science, public health, and health sciences were explored and included hierarchical statistical modeling methods, systematic literature reviews on the evidence-base for interventions, community-based participatory research, and intent to treat analyses.  At the time they were novel to the field; now they are becoming standard practice.

From a public health perspective, disability and health research is maturing.  Within the health disparities framework, disability moved from being considered an outcome or dependent variable, to becoming a risk factor or independent variable that predicted health outcomes.  Important conceptual and measurement work is underway in several areas.  For example, several measures of health are or have been developed that do not rely on measurement of functional abilities as a reflection of health, making them more appropriate for people with long-standing functional limitations.  Other work focuses on understanding the distinction between health differences and health disparities.  Because some people with disabilities will inevitably experience poorer health because of an underlying medical condition that led to their disabilities, researchers are becoming more attentive to ways to methodologically disentangle these contributors to health status in order to maximize health and reduce morbidity.

A number of future directions are proposed.  To move to interventions, we need to know more about what is a problem for whom and why.  Surveillance data have aptly illustrated that Americans with disabilities experience a range of health differences and disparities.  These data have been used repeatedly to argue for increased attention to “people with disabilities”.  In order to successfully ameliorate these disparities, however, researchers will need to disaggregate the data.  This disability data pie can be sliced in a variety of ways, and some knowledge about how to potentially address the problems should help guide these efforts at disaggregation.  Second, environmental factors play an important role in the ICF framework for conceptualizing the disability experience.  Promising work on measuring environmental facilitators and barriers has been underway, as well as application in highly relevant environments of health care and fitness facilities, housing, and general community accessibility.  Expansion of this work and the routine consideration of environmental factors seem essential for the coming decade.  Finally, a promising direction comes from the emerging field of disability epidemiology.  Several writers and teachers (e.g, Adams et al, 2009) have demonstrated how traditional epidemiology methods can be applied to the study of disabilities, application of the full armamentarium of traditional epidemiology such as cohort and case-control epidemiology studies are largely absent from the existing research.  Traditional epidemiology methods can be applied to the study of disabilities, application of the full armamentarium of traditional epidemiology such as cohort and case-control epidemiology studies are largely absent from the existing research; however, we anticipate they will be in greater evidence in future research. 

Action for Intervention

          While disability advocates are often ready to call for immediate action, many disability researchers have been more reluctant to move to action.  When are the data sufficiently compelling and the needs sufficiently pressing to move to action?  Perhaps the area that has witnessed the greatest advances in intervention is that of health promotion intervention for people with disabilities.  A substantial body of work has been conducted that demonstrates the effectiveness in improving health outcomes for people with a range of disabilities (e.g., Ravesloot et al, 2007; Mann, et al. 2006).  This work has been systematically reviewed by an expert panel of NIDRR-funded disability researchers (Drum, Seekins, Rimmer, White et al, 2009) with multiple papers and a technical report nearing completion.  It is hoped that these findings will serve as the basis for a Community Guide on health promotion intervention for disabled populations. 

Future directions in intervention will only be limited by resources and good evidence.  We offer one example.  After almost a decade of research citing differences in smoking and sedentary lifestyles by people with disabilities, the CDC Disability and Health program is committed to intervening to make a difference.   In the near future, we will add an emphasis on reducing smoking, obesity, and infections through health promotion and health care access.  Our approach is based on the emerging model of disability depicted at the beginning of this paper, and emphasizes the inclusion of people with disabilities within generic health promotion and service delivery systems.  We will draw on existing research from multiple fields to identify the evidence-base for interventions.  We intend to mobilize partner organizations and agencies to incorporate this campaign in their activities, and to look for policy initiatives for broader reach and sustainability.  Throughout this process, we intend to incorporate advocacy perspectives and the best of public health science to achieve public health impact.