Multidisciplinary Coordinated Caregiving Research Practice

Policy

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Editorial Board

Douglas Halvorsen, MSW, M.REV

Evergreens Retirement Community
Robert Stodden, PhD
University of Hawaii
Talbott Smith
Litchfield Hills Sotheby’s International Realty
Jan Blacher, PhD
University of California, Riverside
Richard Tagle
Higher Achievement
Sue Lachenmayr, MPH, CHES
New Jersey Department of Health & Senior Services
Jennifer Friday, PhD
Friday Consulting Group, LLC
Colleen Hughes, PhD, RN
Mount Health Connections
Michael Johnson, MD
University of Florida
Paul Fink, MD
Temple University School of Medicine
Harold Pincus, MD
Columbia University Medical Center, Columbia Psychiatry
Raymond P. Lorin, PhD
Towson University

vii
viii Editorial Board

Roger Wetzel, MPA, LSW

St. Alexius Medical Center
David Haigler, EdD
Oglethorpe, GA
Donna Wagner, PhD
New Mexico State University
Terry Elder, MA
Florida AAPR
Barbara Given, PhD, RN, FAAN
Michigan State University
Shirley S. Travis, PhD
George Mason University
May L. Wykle, PhD, RN, FAAN
Case Western Reserve University
Series Foreword

From its inception in 1987, the Rosalynn Carter Institute for Caregiving (RCI) has
sought to bring attention to the extraordinary contributions made by caregivers to
their loved ones. I grew up in a home that was regularly transformed into a caregiving
household when members of my family became seriously ill, disabled, or frail with
age, so my interest in the issue is personal. In my hometown of Plains, Georgia, as
in most communities across our country, it was expected that family members and
neighbors would take on the responsibility of providing care whenever illness struck
close to home. Delivering such care with the love, respect, and attention it deserves
is both labor-intensive and personally demanding. Those who do so represent one
of this nation’s most significant yet underappreciated assets in our health delivery
system.
When the RCI began, “caregiving” was found nowhere in the nation’s health
lexicon. Its existence was not a secret but rather simply accepted as a fact of life. In
deciding on the direction and priorities of the new institute, we convened groups of
family and professional caregivers from around the region to tell their personal stories.
As I listened to neighbors describe caring for aged and/or chronically ill or disabled
family members, I recognized that their experiences reflected mine. They testified that
while caregiving for them was full of personal meaning and significance and could
be extremely rewarding, it could also be fraught with anxiety, stress, and feelings of
isolation. Many felt unprepared and most were overwhelmed at times. A critical issue
in the “field” of caregiving, I realized, was the need to better understand the kinds of
policies and programs necessary to support those who quietly and consistently care
for loved ones.
With the aging of America’s baby boomers expected to double the elderly popu-
lation in the next 20 years, deinstitutionalization of individuals with chronic mental
illnesses and developmental disabilities, a rising percentage of women in the work-
force, smaller and more dispersed families, changes in the role of hospitals, and a
range of other factors, caregiving has become one of the most significant issues of our
time. Caregiving as an area of research, as a focus and concern of policy making, and
as an area of professional training and practice has reached a new and unparalleled
level of importance in our society and indeed globally.

ix
x Series Foreword

As we survey the field of caregiving today, we now recognize that it is an essential

component of long-term care in the community, yet also a potential health risk for
those who provide care. The basic features of a public health approach have emerged:
a focus on populations of caregivers and recipients, tracking and surveillance of health
risks, understanding the factors associated with risk status, and the development and
testing of the effectiveness of various interventions to maximize benefits for both the
recipients of care and their providers.
The accumulated wisdom from this work is represented in the volumes that make
up the Springer Caregiving Series. This series presents a broad portrait of the nature
of caregiving in the USA in the twenty-first century. Most Americans have been,
are now, or will be caregivers. With our society’s increasing demands for care, we
cannot expect a high quality of life for our seniors and others living with limitations
due to illness or disability unless we understand and support the work of caregivers.
Without thoughtful planning, intelligent policies, and sensitive interventions, there
is the risk that the work of family, paraprofessional, and professional caregivers will
become intolerably difficult and burdensome. We cannot let this happen.
The current volume builds on previous volumes in the RCI series. What be-
comes apparent as one scans this volume’s content is that no single discipline holds
proprietary rights to caregiving. This is not, however, to suggest that it therefore
belongs to many disciplines. Rather the message conveyed within and across the
volume’s chapters is that caregiving by definition is most effective when disciplines
collaborate. By having many human service and health service professions appre-
ciate the power of caregiving for both providers and recipients—as well as costs
to providers—we increase significantly the pace at which caregiving happens in a
manner coordinated with other health providers. But the real power of caregiving
occurs when those providing services escape their disciplinary shackles and work
together to identify caregiving needs; appreciate how together they can support both
caregiver and provider, thus magnifying the power of caregiving to improve the lives
of those with acute or chronic disorders and improve the quality of life within their
families.
Readers of this series will find hope and evidence that improved support for family
and professional caregivers lies within our reach. The field of caregiving has matured
and, as evidenced in these volumes, has generated rigorous and practical research
findings to guide effective and enlightened policy and program options. My hope
is that these volumes will play an important role in documenting the research base,
guiding practice, and moving our nation toward effective polices to support all of
America’s caregivers.

Rosalynn Carter
Contents

Part I Introduction

1 The Status of Professional Caregiving in America . . . . . . . . . . . . . . . . . . 3

Shirley S. Travis and Ronda C. Talley

Part II Discipline-specific Professional Caregiving

2 The State of Family Caregiving: A Nursing Perspective . . . . . . . . . . . . . 13

Katherine Morton Robinson

3 Professional Gerontology and Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . 31

Miae Chun, Lewina O. Lee and Bob G. Knight

4 Social Work, Direct Care Workers, and Family Care Provider

Challenges: Crisis in Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
Nancy R. Hooyman

5 Psychological Aspects of Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69

Laura M. Arnstein and Ronald T. Brown

6 Occupational Therapy Perspectives of Caregiving . . . . . . . . . . . . . . . . . 83

Janet L. Valluzzi

7 Education: A Model of Schools as Caregiving Communities . . . . . . . . . 111

K. Leigh Baldwin

Part III Disciplinary Contributions to Caregiving

8 Health Communication and Caregiving Research, Policy,

and Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131
Lisa Sparks

xi
xii Contents

9 An Anthropology of Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 177

Frances K. Barg, Shimrit Keddem, Wendy Shiekman Cohen
and Rebecca Henderson

10 Caregiving in Late Life: A Life Span Human Development

Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195
Karen A. Roberto and Shannon E. Jarrott

11 Contributions of Public Health to Caregiving . . . . . . . . . . . . . . . . . . . . . . 209

Ronda C. Talley, John E. Crews, Donald Lollar, Diane Elmore,
Martha R. Crowther and Janet Valluzzi

12 Public Policy and Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 239

Nora Super

Part IV Conclusions

13 Professional Caregiving: Working Together to Provide Quality,

Comprehensive, Coordinated Care—A Call to Action . . . . . . . . . . . . . . 255
Ronda C. Talley and Shirley S. Travis

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261
Contributors

Laura M. Arnstein College of Medicine, Genetics & Developmental Pediatrics,

Medical University of South Carolina, Charleston, USA
K. Leigh Baldwin Department of Defense, Ft. Campbell, KY, USA
Frances K. Barg Department of Family Medicine and Community Health, Univer-
sity of Pennsylvania School of Medicine, Philadelphia, USA
Ronald T. Brown University of North Texas at Dallas, Dallas, USA
Miae Chun Department of Social Work, Chongshin University, Seoul, South Korea
Wendy Shiekman Cohen Philadelphia, USA
John E. Crews Division of Human Development and Disability, National Center
on Birth Defects and Developmental Disabilities, Centers for Disease Control and
Prevention, Atlanta, USA
Martha R. Crowther Department of Psychology, University of Alabama,
Tuscaloosa, USA
Diane Elmore American Psychological Association, Washington, USA
National Center For Child Traumatic Stress, Duke University Medical Center,
Durham, NC, USA
Rebecca Henderson Philadelphia, USA
Nancy R. Hooyman CSWE National Center on Gerontological Social Work
Education, School of Social Work, University of Washington, Seattle, USA
Shannon E. Jarrott Department of Human Development, Virginia Polytechnic
Institute and State University, Blacksburg, USA
Shimrit Keddem University of Pennsylvania, Philadelphia, USA
Bob G. Knight University of Southern California, Los Angeles, USA

xiii
xiv Contributors

Lewina O. Lee Department of Epidemiology, Boston University School of Public

Health, Boston, USA
Department of Veterans Affairs Boston Healthcare System, Boston, MA, USA
Donald Lollar Oregon Institute on Disability and Development, Portland, USA
Division of Human Development and Disability, National Center on Birth Defects
and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta,
USA
Karen A. Roberto Center for Gerontology and the Institute for Society, Culture
and Environment, Virginia Polytechnic Institute and State University, Blacksburg,
USA
Katherine Morton Robinson University of North Florida, Jacksonville, USA
Lisa Sparks M.S. Health and Strategic Communication, Chapman University,
Orange, USA
Chao Family Comprehensive Cancer Center, NCI Designated, University of
California, Irvine, USA
Nora Super U.S. Department of Health & Human Services, Washington, USA
George Washington University, Washington, USA
Ronda C. Talley College of Education and Behavioral Sciences, Western Kentucky
University, Bowling Green, USA
Division of Human Development and Disability, National Center on Birth Defects
and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta,
USA
Shirley S. Travis College of Health and Human Services, George Mason Univer-
sity, Fairfax, USA
Janet Valluzzi Division of Human Development and Disability, National Center
on Birth Defects and Developmental Disabilities, Centers for Disease Control and
Prevention, Atlanta, USA
About the Editors

Ronda C. Talley, PhD, MPH is Professor of Psychology at Western Kentucky

University. Dr. Talley’s professional experience includes providing national leader-
ship on caregiving issues and organizational development as Executive Director of
the Rosalynn Carter Institute for Caregiving and the National Quality Caregiving
Coalition; working with federal government groups to promote caregiving issues
as Associate Director of Legislation, Policy, and Planning/Health Scientist for the
Centers for Disease Control and Prevention, U.S. Department of Health and Human
Services, in Atlanta, GA; and promoting the science and practice of psychology in
the schools as Associate Executive Director of Education and Director of School
Policy and Practice at the American Psychological Association in Washington, DC.
Dr. Talley taught ethics and legal issues in school psychology at the University of
Maryland, College Park, and clinical, counseling, and school psychology students at
Spalding University in Louisville, KY. Prior to that time, Dr. Talley worked a teacher
of students with special needs and school administrator for almost 20 years in the
Jefferson County (KY) Public Schools where she supervised a multi-disciplinary
private practice.
Dr. Talley received the OutstandingAlumniAward from Indiana University and the
Jack Bardon Distinguished Service Award from the Division of School Psychology
of the American Psychological Association. She serves on the national board of
the American Association of Caregiving Youth, the Indiana University School of
Education Board of Visitors, and the Western Kentucky University National Alumni
Advisory Board. Dr. Talley is Editor-in-Chief of the Springer CARE book series
on diverse caregiving issues. Dr. Talley may be reached at 1906 College Heights
Boulevard, GRH 3023, Bowling Green, KY 42101; by telephone at (270) 745-2780;
or via e-mail: [email protected].
Shirley S. Travis, PhD, APRN, FAAN was the founding Dean of the College
of Health and Human Services at George Mason University. Her research and
publications address the patterns of care that dependent older adults and their
family caregivers require over time. Her awards and honors include the Janssen
Eldercare Lifetime Achievement Award for contributions to the healthcare of older
Americans, Academic Gerontologist of the Year by the Southern Gerontological

xv
xvi About the Editors

Society for her record of applied research in long-term care, and the Springer Geri-
atric/Gerontological Nursing Research Award for her end of life research. From 2001
to 2004, Dr. Travis was an Eminent Scholar of the Rosalynn Carter Institute for Care-
giving and served on the Institute Board of Directors from 2004 to 2008. Dr. Travis
has authored or co-authored more than 100 articles, books, and book chapters on
aging and long-term care.
She is a Past President of the National Gerontological Nursing Association and a
former Chair of the Clinical Medicine Section (now Health Sciences Section)/Vice
President of the Gerontological Society of America. During her career she was an
elected fellow of the Association for Gerontology in Higher Education, the Geronto-
logical Society of America, the National Gerontological Nursing Association, and the
American Academy of Nursing. Dr. Travis served as Dean of College of Health and
Human Services at George Mason University from 2005 to 2012, and is the founding
dean of the college. She is currently a Senior Administrative faculty member in the
college, as she completes her transition to retirement.
About the Authors

K. Leigh Baldwin, PhD, MS, EdS, MAEd, NCSP is dually credentialed in Clini-
cal and School Psychology. She is a Ph.D. graduate of the University of Kentucky and
subsequently completed a post-Doctoral Masters degree in Education. Dr. Baldwin
has served as a consultant to national organizations and presents on a variety of top-
ics, including ethics in practice, the recovery philosophy of care, family caregiving,
and psycheducational consultation. During her tenure in public schools, Dr. Baldwin
led grand-funded initiatives promoting literacy as well as integrating technology in
curricula. Subsequently, as a faculty member she was recognized with distinguished
faculty honors for excellence in teaching and program development. In addition, Dr.
Baldwin was the founding director of The Recovery Mall, an award-winning hospital
treatment program in Western Kentucky, She has served on the Board of Directors
of several community organizations, including chairing fundraising campaigns for
youth organizations and helping to improve housing options for individuals who
have mental illness. Dr. Baldwin currently works for the Department of Defense
at Fr. Campbell, KY, leading a multidisciplinary team focused on soldier care and
recovery. Dr. Baldwin has both personal and professional experience as a caregiver
and is dedicated to advancing knowledge of caregiving-related concerns.
Frances K. Barg, PhD, MEd is Associate Professor of Family Medicine and Com-
munity Health at the Hospital of the University of Pennsylvania and Co-Director of
the Mixed Methods Research Lab.
Ronald T. Brown PhD is the second president of the University of North Texas at
Dallas. Previously, he served as the provost and senior vice president for academic
affairs at Wayne State University in Detroit, MI, and as dean of the College of Health
Professions and Social Work as well as interim dean of the School of Dentistry at
Temple University in Philadelphia, PA. Dr. Brown held the position of associate
dean of the College of Health Sciences at the Medical University of South Carolina
where he received the Scholar of the Year Award and the Mitchell I. Rubin Award
for Distinguished Contributions to the Advancement of Medical Science in the Field
of Health Care in Pediatrics at the Medical University of South Carolina. Dr. Brown
has directed a pre- and post-doctoral clinical psychology program and served as a
consultant to attorneys, universities and the federal government.

xvii
xviii About the Authors

Dr. Brown has been a member of the Council of Representatives of the American
Psychological Association, where he served as president of the Society of Pediatric
Psychology of the American Psychological Association. He received the society’s
Martin P. Levin Award for Mentorship and the Logan Wright Distinguished Research
Award. He has been a member of the Behavioral Medicine Interventions and Out-
comes study section at the National Institutes of Health (NIH). He chaired several
special panels at NIH, including one that conducted an intramural review of the Pe-
diatric Oncology Branch, the Pioneers research program for early career scientists
and the advisory board of the Heart Lung and Blood Institute, Sickle Cell Branch. A
licensed and board-certified psychologist, Dr. Brown is President-elect of the Asso-
ciation of Psychologists in Academic Health Centers of the American Psychological
Association. Other boards of which he is a member include the American Academy
of Pediatrics, Psychosocial Committee; Detroit Receiving Hospital; and the Center
on Work and Family at Claremont McKenna College.
Dr. Brown is editor of Professional Psychology: Research and Practice and past
editor of The Journal of Pediatric Psychology and is. He has served on the editorial
board of over 15 journals in the field of health care and child psychology and has
published nine books and more than 300 articles and chapters.
Laura Arnstein Carpenter, PhD, BCBA Dr. Carpenter’s professional inter-
ests include autism spectrum disorders, developmental disabilities, and learning
disabilities.
Miae Chun is an assistant professor in the Department of Social Work, Chongshin
University, South Korea. She also serves as the editor for the Journal of the Korean
Gerontological Society, and as a Deputy Secretary-General of the Organizing Com-
mittee for the 20th IAGG World Congress of Gerontology and Geriatrics being held
in 2013 in Seoul, Korea. In addition, she is serving her community as a chairperson of
Seoul Ganganm-gu District Social Welfare Practical Affairs Consultation Services,
and a member of the Long-Term Care Insurance Development Forum of the Ministry
of Health and Welfare in South Korea.
Wendy Shiekman Cohen is currently a Manager in Accenture’s Management Con-
sultant practice, specializing in the areas of Human Capital Strategy, Organization
Effectiveness, Talent, and Change Management. Her career has been focused on the
intersection of organizational psychology and anthropology, corporate cultures, and
business. Wendy received her MBA from The Wharton School in Management and
Organizational Behavior in 2010, and her BA from University of Pennsylvania in
English and Anthropology in 2002.
John E. Crews, DPA is a Health Scientist with the Vision Health Initiative in
the Division of Diabetes Translation of the National Center for Chronic Disease
Prevention and Health Promotion, Centers for Disease Control and Prevention in
Atlanta, GA. Dr. Crews’ specialties are vision impairment and aging, caregiving,
and disability; his research interests also include health disparities among people
with disabilities and aging with a disability.
Dr. Crews has more than 30 years of experience in vision rehabilitation and
disability research. He managed a clinical program for older people with visual im-
pairments in Michigan between 1977 and 1992. He then became the Acting Director
About the Authors xix

of the Rehabilitation Research and Development Center on Aging at the Department

of Veterans Affairs in Atlanta. In 1998, he joined the Centers for Disease Control
and Prevention.
Dr. Crews received his BA from Franklin College in Franklin, IN. He received
two Master of Arts degrees, one from Indiana University in Bloomington, IN, and
another from Western Michigan University in Kalamazoo, MI. He received his DPA
from Western Michigan University. He has written numerous peer-reviewed sci-
entific articles and two books, Vision Loss in an Aging Society and The Multiple
Dimensions of Caregiving and Disability. Dr. Crews served on the Board of Trustees
of the American Foundation for the Blind and on board committees of Lighthouse
International. He was board chair of the National Literacy Center of the American
Foundation for the Blind in Atlanta. He serves on the editorial board of the Journal
of Visual Impairment and Blindness, and also serves on the National Commission on
Vision and Health.
Martha R. Crowther, PhD, MPH is Associate Professor in the Department
of Psychology at The University of Alabama. She may be reached at PO Box
870348, Tuscaloosa, AL 35487; by telephone at 205-348-7802; or via e-mail at
[email protected].
Dr. Elmore has worked as a policy advisor, advocate, and congressional staff mem-
ber, using her psychology and public health training to analyze and inform the debate
on a variety of important health policy issues, including health reform, violence
against women, human trafficking, hate crime, emergency preparedness and re-
sponse, military service member and veteran health care, and funding for scientific
research and mental health services. She currently serves as Director of the Policy
Program for the UCLA-Duke University National Center for Child Traumatic Stress
and is an Adjunct Professor in the School of Public Affairs at American University.
Previously, she served as the Associate Executive Director of the American Psycho-
logical Association’s (APA) Public Interest Government Relations Office, Director
of the APA Congressional Fellowship Program, and coordinator of APA activities
related to military service members, Veterans, and their families. She also worked
as the Society for the Psychological Study of Social Issues (SPSSI) James Marshall
Public Policy Scholar in the APA Public Policy Office, working on policy initiatives
related to trauma, violence, and abuse and aging issues.
Prior to her work at APA, Dr. Elmore served as an AAAS/APA Health Policy Fel-
low in the office of then-Senator Hillary Rodham Clinton, where she was a member
of a legislative team responsible for policy issues including health care, mental and
behavioral health, aging, trauma and abuse, and military service member and veteran
health care.
Dr. Elmore earned her PhD in Counseling Psychology from the University of
Houston and completed the doctoral internship at the National Center for PTSD,
Pacific Islands Division/Honolulu VA Medical Center. She holds a Master of Public
Health degree from Johns Hopkins University with a dual concentration in public
health policy and public health preparedness.
xx About the Authors

Rebecca Henderson currently assists with research in the University of Penn-

sylvania’s Department of Family Medicine. She holds a BA in Anthropology and
Linguistics from the University of Mary Washington.
Dr. Nancy R. Hooyman Professor in Gerontology and Dean Emeritus at the Univer-
sity of Washington School of Social Work, received her Ph.D. in Sociology and Social
Work from the University of Michigan. She is recipient of the School’s first endowed
professorship in gerontology, the Nancy R. Hooyman Professorship. She served as
Principal Investigator of the Hartford Geriatric Enrichment in Social Work Education
Project (GeroRich), a national curriculum change initiative (2001–2004); co-PI of the
Hartford-funded Planning Grant National Center for Family Care Initiatives (2007–
2009); and PI of the Hartford Practicum Partnership Project at the School of Social
Work (2006–2009). She is co-Principal Investigator of the CSWE National Center on
Gerontological Social Work Education (2004–2012); and a Co-Investigator on Care-
giving with Pride, funded by NIA (Dr. Karen Fredriksen-Goldsen, PI). She is author
of 11 books and over 130 peer review articles and book chapters related to gerontol-
ogy and women’s issues, and is a frequent presenter on multigenerational policy and
practice, gender inequities in family caregiving, feminist gerontology, end-of-life
care, and gerontological curricular change. Her co-authored books include a widely
used text, Social Gerontology: A Multidisciplinary Perspective (9th edition); Trans-
forming Social Work Education: The First Decade of the Hartford Geriatric Social
Work Initiative; Living through Loss: Interventions across the Lifespan; Achiev-
ing Curricular and Organizational Change; Feminist Perspectives on Family Care:
Policies toward Gender Justice; and Taking Care of Older Relatives, one of the first
widely used books on family caregiving.
She is the recipient of the 2009 CSWE Lifetime Achievement Award in Social
Work Education and the 1998 Lifetime Achievement Award from the Association
for Gerontology Education in Social Work Education, and was inducted into the
American Academy of Social Work and Social Welfare in 2011. She is a Fellow
and past-chair of the Social Research Policy and Practice (SRPP) Section of GSA;
Past-President of SSWR; Past-President of the National Association of Deans and
Directors of Social Work; past-Board member of the National Institute for the Ad-
vancement of Social Work Research; and Past Chairperson of the Action Network
for Social Work Education and Research. She has served on the Advisory Boards
for all the Hartford Foundation Geriatric Initiatives, has been a National Mentor five
times, and is a member of the Hartford Scholars selection committee. She chairs
the interdisciplinary Elder Friendly Future Partnership at UW. In Seattle, she is im-
mediate past-President of the Board of Senior Services and chaired the United Way
Impact Council on Older Adults.
Shannon Jarrott is Associate Professor and Director of Intergenerational Programs
in the department of Human Development. After completing graduate studies at
Penn State, she joined Virginia Tech in 1999 as a faculty member and the first
Director of Research at the department’s Adult Day Services (ADS) program. Her
research focuses on intergenerational community building with a specialization in
shared site intergenerational programs serving frail elders. She leads the Neighbors
Growing Together program, which consists of Adult Day Services and the Child
About the Authors xxi

Development Center for Learning and Research. This award-winning group is the
oldest university-based shared site intergenerational program in the US. Dr. Jarrott
has been invited to contribute to United Nations and other international efforts to
promote intergenerational theory, research, and practice.
Shimrit Keddem, MS is the manager of the Mixed Methods Research Lab in
the Perelman School of Medicine at the University of Pennsylvania. Ms. Keddem
received a BA in Psychology from McGill University and a Masters in Urban Spatial
Analysis from the University of Pennsylvania.
Bob G. Knight, PhD is the Merle H. Bensinger Professor of Gerontology, Psy-
chology, and Counseling Psychology at the Andrus Gerontology Center, University
of Southern California, where he also serves as Director of the Tingstad Older Adult
Counseling Center.
Lewina O. Lee, PhD is a Research Fellow at the Department of Epidemiology,
Boston University School of Public Health and the Department of Veterans Affairs
Boston Healthcare System. She may be reached at 150 South Huntington Avenue
(151MAV), Boston, MA 02130; by telephone at (857) 364-6364; or via email at
[email protected].
Donald Lollar, EdD is Director, Oregon Center for Disability and Development
at the Oregon Health and Science University. The Oregon Institute on Disability &
Development (OIDD) at the Child Development and Rehabilitation Center is one of
67 US University Centers for Excellence in Developmental Disabilities. He is also
Professor, Department of Public Health and Preventive Medicine at OHSU and As-
sociate Director for Academic Affairs at the Child Development and Rehabilitation
Center of OHSU. Dr. Lollar is an initiator and member of the World Health Organi-
zation task force to adapt the international classification (ICF) for children and youth
with disabilities. He serves on the ICF-CY Task Force, an ongoing international
activity related to disability classification for children and youth.
Don Lollar served as Senior Research Scientist, Division for Human Development
and Disability, National Center on Birth Defects and Developmental Disabilities
(NCBDDD) at the Centers for Disease Control and Prevention in Atlanta. Prior to
joining CDC, Dr. Lollar practiced rehabilitation psychology for 25 years, providing
assessment and therapy services to children, adults, and families across the lifespan.
His advanced degrees are from Indiana University, and his most recent writings in-
clude co-editing an Archives of Physical Medicine and Rehabilitation supplement
on the Science of Disability Outcomes, and articles for the Annual Review of Public
Health, Public Health Reports, and the Journal of Developmental and Behavioral
Pediatrics. He spent seven years developing public health science and programs to
increase participation in society among people with disabilities by promoting health
and preventing secondary conditions, and directed NCBDDD’s Office of Extramu-
ral Research, leading the mental health workgroup. He served as the co-lead of
the HEALTHY PEOPLE 2010 workgroup on Disability and Secondary Conditions
(Chapter 6 of HP 2010), and served as CDC representative to the advisory commit-
tee for the Child and Adolescent Measurement of Health Initiative and the Surgeon
General’s Task Force on Children’s Mental Health.