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.