Table Of ContentDonald J. Lollar
Willi Horner-Johnson
Katherine Froehlich-Grobe Editors
Public Health
Perspectives
on Disability
Science, Social Justice, Ethics, and
Beyond
Second Edition
Public Health Perspectives on Disability
Donald J. Lollar • Willi Horner-Johnson
Katherine Froehlich-Grobe
Editors
Public Health Perspectives
on Disability
Science, Social Justice, Ethics, and Beyond
Second Edition
Editors
Donald J. Lollar Willi Horner-Johnson
School of Public Health Institute on Development and Disability
Oregon Health & Science University Oregon Health & Science University
Portland, OR, USA Portland, OR, USA
Katherine Froehlich-Grobe OHSU-PSU School of Public Health
Baylor Scott and White Institute Portland, OR, USA
for Rehabilitation
Dallas, TX, USA
University of Texas School of Public Health
Dallas Regional Campus, USA
ISBN 978-1-0716-0887-6 ISBN 978-1-0716-0888-3 (eBook)
https://doi.org/10.1007/978-1-0716-0888-3
© Springer Science+Business Media, LLC, part of Springer Nature 2011, 2021
This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of
the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation,
broadcasting, reproduction on microfilms or in any other physical way, and transmission or information
storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology
now known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication
does not imply, even in the absence of a specific statement, that such names are exempt from the relevant
protective laws and regulations and therefore free for general use.
The publisher, the authors, and the editors are safe to assume that the advice and information in this book
are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the
editors give a warranty, expressed or implied, with respect to the material contained herein or for any
errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional
claims in published maps and institutional affiliations.
This Springer imprint is published by the registered company Springer Science+Business Media, LLC,
part of Springer Nature.
The registered company address is: 1 New York Plaza, New York, NY 10004, U.S.A.
Dr. Allan Meyers envisioned a public health
world in which disability was an integral
part of the public health curriculum in all
schools and programs, and that people with
disabilities would live more healthy and
fulfilled lives as a result. He believed that the
foundational areas of public health should
include disability applications. His passion,
vision, and energy for this topic culminated
in a 1998 conference sponsored by the
U.S. Centers for Disease Control and
Prevention (CDC) led by Dr. Meyers and
included a small group of public health
academics, practitioners, and CDC
Disability and Health staff. The first study on
inclusion of disability in public health
curricula was completed by him and his
students, concluding that “there is a clear
need for more systematic and comprehensive
coverage of disability in the graduate public
health curriculum.” He was adamant that all
public health students be immersed in
disability-focused academic opportunities,
including science, policy, and programs. He
was tenacious and enthusiastic about this
venture and implemented it at Boston
University, where he had served for years on
the faculty of the School of Public Health. He
died prematurely in 2001 before the first
edition of this volume was published. We
hope that this book moves Allan’s vision
forward so that public health professionals
are better equipped to improve the health
and well-being of people with disabilities.
Chris Kochtitzky, MSP, was an urban
planner of a unique sort. He did not plan
new developments, calculate transit
ridership, or host community design
charrettes. Rather, he did what urban
planners are supposed to do—bring people
together to envision and plan for a better
future. Instead of a single community, Chris
orchestrated urban planning across national,
state, and local scales through knowledge
dissemination and building multi-sector
collaborations that broke down silos and
divisions between disciplines of urban
planning, public health, aging, disability
studies, engineering, architecture, medicine,
and more. Chris was a social justice pioneer
who helped policy makers and practitioners
understand the link between urban planning
and public health, especially for people with
disabilities and older adults. Working across
many departments at the Centers for Disease
Control and Prevention, Chris helped to
elevate the importance of environmental
influences on public health for all people
through public health initiatives, standards,
funding opportunities, courses in the Rollins
School of Public Health at Emory University,
and many influential articles and chapters.
Chris dedicated 28 years of service at the
CDC in pursuit of social justice and healthy
equity goals. Chris passed away prematurely
before the publication of the new edition of
this volume. We hope this book and
especially the chapter on environmental
public health pass on the meaningful,
interdisciplinary ideas and linkages to public
health professionals that Chris was
passionately committed to, and tirelessly
worked towards, throughout his career.
Foreword
Disability has touched or will touch most of us during our lifespan. My teachers
about disability are many, beginning with members of my own family, friends, and
colleagues. Despite their disabilities and chronic conditions—whether visible to
others or not—all of these individuals live each day to their fullest by striving to do
all functions of daily living well, maintaining good health, and participating in work
and community events to the fullest. In most cases, they would say that they are no
different than those without disabilities and do not want to be treated as if they have
a medical illness or were different from others. Instead, they acknowledge that they
have challenges but can do the things everyone else can do if they have the supports
and services in their environments to enable them to function fully in all aspects of
living, including work and play. And, with the right supports in their respective fam-
ily and social environments, they can be very productive and have a good quality of
life over their life courses.
As a public health researcher, policy maker, and advocate, however, I continue to
experience a large disconnect between the experiences of individuals with disability
and the larger public community, including those who formulate policies or conduct
research regarding disability. Unfortunately, many still use a medically focused lens
on disability and do not address the larger societal context that is needed to support
individuals with disability. Although there has been progress made in attitudes and
understanding of disability in the past decade since the first edition of this volume
was published, there is still much to be done to eliminate discriminatory attitudes
about disability and the resulting stigma about individuals with disability in order
for all to receive the environmental accommodations needed so all can thrive in all
career paths.
Changes in attitude and understanding about disability must happen in disci-
plines, including medicine, and all sectors of the community that intersect with
disability. A public health approach, which this volume uses as a framework for
each chapter, is needed to inform how all of us understand disability. A community-
based, population-based public health approach will lead to a transformation in the
way disability is viewed by the public as well as to improved health and quality of
vii
viii Foreword
life for all with disabilities. This important volume describes the public health
approach to disability from a variety of disciplines, societal sectors, and other
perspectives.
Societal Importance of Addressing Disability
The economic and social reasons why individuals with disabilities can no longer be
ignored for a productive and successful economy in the United States and globally
continue to intensify as the number of individuals with disabilities grows across the
lifespan. No longer can we afford to exclude individuals with disabilities and
chronic illnesses from productive jobs and well-integrated lives in the community.
Globalization trends and aging demographics in the United States imply that every
child and youth today be prepared to be a member of a specialized workforce over
their lifetime. The chapter on aging and disability by Clark, Twardzik, and Meade
as well as those on disability and health programs by Nary and Mullis and federal
programs and disability by Hall elaborate on these themes.
During the next few decades, it is expected that there will be much fewer younger
workers under 35 years of age for every individual that turns 65, many of whom
choose to receive social security benefits. The aging of the “baby boom” generation
in the United States continues to increase with an exploding number of elders in the
next few decades. This aging population of the future will have an increased inci-
dence of chronic illnesses as well as physical and/or cognitive impairments.
Data from the Behavioral Risk Factor Surveillance System collected in 2016
(Okoro, Hollis, Cyrus, & Griffin-Blake, 2018) revealed that 25% of adults in the
United States—61 million—have a disability that impacts major life activities.
Mobility, the most common disability, affects 2 in 5 adults age 65 and older. These
disabilities can be attributable to chronic illness, intellectual or developmental dis-
abilities, mental illness, injury, or other underlying conditions. Furthermore, the
number and percentage of individuals with disabilities and/or chronic conditions
vary by the type of condition (e.g., cognitive impairment, physical impairment, sen-
sory impairment), geography (e.g., region, state), and various demographic charac-
teristics (e.g., education, race, gender, age).
Another compelling reason to successfully address the challenges of disability is
related to the medical and societal costs associated with disability. It is estimated
that 27% of healthcare expenditures were associated with disability in 2006
(Anderson, Armour, Finkelstein, & Wiener, 2010), with Medicaid and Medicare
accounting for 69% and 38%, respectively. The major costs of health care related to
chronic conditions increasing must address issues associated with disability or sup-
ports needed for functioning. The majority of dollars spent on individuals with dis-
abilities in the healthcare and social support systems are spent on expensive
treatments and institutionalized settings such as nursing homes and habilitation set-
tings. Much too little is spent on changing the physical and social environments that
Foreword ix
encourage health promotion and prevention of secondary conditions that are neces-
sary for maximum health and well-being of those with a disability.
The provision of community-based care and services—with an emphasis on
environmental supports—must be accelerated with supporting policies at the local,
state, and federal levels. Major federal initiatives, such as Medicaid demonstration
programs and Title V (of the Social Security Act) funding through the Maternal and
Child Health Block Grant, as well as various community-based initiatives, such as
Special Olympics and family-led organizations, are needed to propel the funding of
community-based options that empower individuals with disabilities to direct and
fund the services they need to live productive lives, including full inclusion in work
without fear of losing health or other benefits. More resources are needed “upstream”
in the “healthcare system” to support more prevention and health promotion ser-
vices for individuals with disabilities so that major complications and secondary
conditions do not develop. In addition, the adoption of laws and regulations that
promote inclusion and equity for individuals with disabilities is necessary to make
changes for all individuals with disabilities at the population-wide level.
Implementation of the Patient Protection and Affordable Care Act, enacted in
law in March 2010, must be protected and expanded to successfully address issues
related to disability in the next decade. This healthcare reform legislation continues
to offer opportunities for a public health approach to disability in the establishment
of health outcomes, conduct of comparative effectiveness research, development of
clinical and community prevention initiatives, implementation of health informa-
tion technology in clinical and public health settings, examination of cost control
strategies, and implementation of secondary prevention and health promotion initia-
tives in the community.
Significance of Sourcebook on Public Health and Disability
This second edition of the sourcebook on public health and disability will enable the
study of disability from a public health perspective. Public health, the practice of
social justice using science-based strategies to improve population health, has the
approaches and congruence of mission that can propel research, practice, and advo-
cacy related to disability in the future. The current inequities in access to prevention
and intervention services and policies for individuals with disability are a major
social injustice in the United States and globally. The chapter on health equity and
intersectionality by Horner-Johnson presents the evidence that people with disabili-
ties are a health disparity population who need focused attention as do other popula-
tions suffering with health inequities. Embracing disability as a health disparity can
lead to major advances in reducing inequities and maximizing well-being for people
with disabilities in the future.
The focus on disability from a public health perspective has slowly grown over
the past three decades since the passage of the Americans with Disabilities Act
x Foreword
(ADA) to outlaw discrimination against people living with physical and/or mental
disabilities. The national commitment to public health and disability is acknowl-
edged today by the existence of 19 states having a State Disability and Health
Program funded by a grant from CDC. These programs, discussed in the chapter by
Nary and Mullis, support evidence-based approaches to improve the health and
quality of life among people with mobility limitations and/or intellectual disabili-
ties. I am pleased to have started the first office of disability and health in the coun-
try in the Massachusetts Department of Public Health in the late 1990s with Deborah
Allen and Laura Rauscher, its first director. We were pleased to do one of the first
state surveys of all mammography facilities to assure access for women with dis-
abilities and publish the first report on the health status and access for adults with
disabilities. Given the strong role public health agencies can play in improving the
lives for individuals with disabilities, I do lament the fact that all state public health
agencies do not include disability programs after two decades of work. Our vision
for individuals with disabilities across the lifespan is being implemented at a much
slower pace than we would like, but the struggle for equity for this population across
most sectors in society continues.
However, it is encouraging that other sectors, such as the philanthropic commu-
nity, are explicitly addressing inequities related to individuals with disabilities in
their funded initiatives (Besser, 2019). For example, the leaders of the Robert Wood
Johnson Foundation and the Ford Foundation are working with 15 foundations on
the Presidents’ Council on Disability Inclusion in Philanthropy to champion inclu-
sion of disability in own organizations and philanthropic mission.
This second edition will allow for more work in the continual development of
principles, programs, and policies needed for building a strong foundation for pub-
lic health and disability within the United States and globally. The editors of this
volume have assembled leading public health experts in the various areas of public
health to contribute to this volume, which can be used in courses in schools and
programs on public health and related disciplines. There are chapters related to
many of the competencies needed to be a public health practitioner and leader: i.e.,
statistics and epidemiology, social and behavior sciences, environment and health
services, law and ethics, maternal and child health, and international health. As
discussed in the chapter on disability in the health curriculum by Griffen and
Havercamp, this sourcebook can be used in any of the relevant courses in each of the
areas of public health or can be used as a text in a course on disability.
A public health systemic approach is needed to guide research, interventions,
policies, and advocacy related to disability in order to fully transform health and
social systems. Each of the authors explores how disability is related to each of the
public health disciplines and sectors. In many cases, it is clear how much needs to
be done to embrace disability to move the field of public health and disability for-
ward. This basic sourcebook is an important contribution in the establishment of
public health and disability as a key area of study in public health programs and
schools.
