The ARCH Virtual Respite Research Summit was the capstone event for ARCH’s Respite Research Initiative and the work of the Committee for Advancement of Respite Research (CARR).  Since the launch of the initiative in 2013, ARCH has been working, with support from the Administration for Community Living, to encourage quality respite research, expand national data collection efforts to address respite care and caregiving, and advance an evidence-base for respite services.

The aim of the Summit was to:

  • Establish ARCH's foundational work in advancing respite research;
  • Highlight current research and evaluation initiatives that align with and elevate the work of the Committee for Advancement of Respite Research;
  • Prioritize cultural and linguistic competence in respite research;
  • Demonstrate that ARCH's respite research initiative aligns with ACL's National Strategy to Support Family Caregivers; and
  • Serve as a call to action to continue advancing respite research.

We were honored to feature the following speakers who are preeminent in their respective fields. They shared their most recent work in significant national and state research and evaluation initiatives that will help to advance the evidence-base for respite.

October 28, 2024: The Value of Respite Model and Common Data Elements

Welcome and Overview

Lori

Lori Stalbaum

Program and Management Analyst, Office of Supportive and Caregiver Services, Administration for
Community Living, Administration on Aging, U.S. Department of Health and Human Services

Lori Stalbaum began her federal career as a Presidential Management Fellow at the Administration on Aging (AoA), after receiving her master’s degree in social work. Throughout her 23 years at AoA/ACL, Lori has worn many hats.  In 2019, she joined AoA’s Office of Supportive and Caregiver Services as a Program and Management Analyst.  In this role, she has served as the co-lead for the RAISE Family Caregiving Council and the Council to Support Grandparents Raising Grandchildren.  She is the Team Lead for the Lifespan Respite Care Program as well as the federal project officer for the Lifespan Respite Technical Assistance and Resource Center and other special projects.  She oversees the Grandfamilies and Kinship Support Network, the first-ever national technical assistance center that works with government agencies and nonprofit organizations in states, tribes, and territories to improve supports provided to grandparent and kinship families.

JKagan

Jill Kagan, MPH

Director, ARCH National Respite Network and Resource Center

Jill Kagan is the director of the ARCH National Respite Network and Resource Center. In this capacity, she oversees the work of the ACL-funded Lifespan Respite Technical Assistance and Resource Center, the National Respite Coalition, and other special projects. She serves on numerous national advisory boards, including the Executive Committee for the BOLD Public Health Center of Excellence in Dementia Caregiving at the University of Minnesota, the Steering Committee for the Alzheimer's Association's Center for Dementia Respite Innovation, and the Advisory Committee for USAging’s Innovations in Family Caregiver Services and Supports Initiative. She also serves as faculty for the RAISE Act Family Caregiver Implementation and Technical Assistance Center at the National Academy for State Health Policy. She co-chaired the Respite Impact Council for the Elizabeth Dole Foundation’s Hidden Heroes Campaign for Military Caregivers, and served on the Duke-UCLA National Child Traumatic Stress Network Advisory Committee.  She recently was named a Subject Matter Expert for the Grandfamilies & Kinship Support Network. 

Presentation of Committee for Advancement of Respite Research (CARR) Work: Measuring the Value of Respite and Recommended Common Data Elements for Respite Research

Kim Whitmore

Kim Whitmore, PhD, RN

Facilitator of the ARCH Committee for Advancement of Respite Research and Summit Moderator

Kim Whitmore, PhD, RN, CPN has more than 20 years of progressive leadership experience working with communities as a home-care nurse manager, private duty nurse, local Health Officer, Policy Section Chief and State Health Plan Officer for the Wisconsin Division of Public Health, educator and research scientist. Currently, Dr. Whitmore is an Assistant Professor in the College of Nursing at Marquette University where she helps to cultivate the next generation of nurse leaders who will transform the healthcare system. Her areas of teaching expertise include health policy, leadership, pediatric/family nursing, and community health. The overall goal of her research program is to inform the development of a care delivery system that promotes health equity and supports positive outcomes for family caregivers.  She also serves a a research consultant to the ARCH National Respite Network and Resource Center.

Sarah Swanson

Sarah Swanson, MPH

Assistant Professor & Family Support Coordinator
UNMC Munroe-Meyer Institute, University of Nebraska Medical Center

Sarah Swanson, MPH, is an Assistant Professor for the University Center for Excellence in Developmental Disabilities (UCEDD) program at the University of Nebraska Medical Center (UNMC) Munroe-Meyer Institute (MMI). She is currently serving as a consultant to the Association of University Centers on Disabilities (AUCD) as part of the Administration for Community Living’s Grassroots Project. In this role, she offers technical assistance to the UCEDD Network and is working to build disability-related coalitions and improve stakeholder’s knowledge and involvement within Medicaid home and community-based services. Ms. Swanson is the Director of MMI’s Family Care Enhancement Project (FCEP), which places Parent Resource Coordinators (PRCs- another name for Community Health Workers) in medical clinics across the state of Nebraska. She is the primary investigator over many projects that offer services and supports to children with disabilities and special health care needs and their families. She serves on many state leadership teams and advisories to improve access and promote activities that benefit children with disabilities and their families. She is interested in disability-related policy and implementation science and is a PhD student at the UNMC College of Public Health where she is studying Health Promotion and Disease Prevention.

National Initiatives that Align with Application of the CARR’s Value of Respite Framework and Common Data Elements Recommendations

Moderated by Kim Whitmore, PhD, RN, Marquette University, ARCH Research Consultant

Lynn Miescier
Evaluation Plan for Guiding an Improved Dementia Experience (GUIDE) Model

Lynn Miescier, PhD, MHA

Center for Medicare & Medicaid Innovation
Centers for Medicare & Medicaid Services

Lynn works as a social scientist with the Center for Medicare and Medicaid Innovation, evaluating new payment and care delivery models for people with serious illness. Lynn holds a PhD in gerontology/MS in epidemiology from the University of Maryland, Baltimore; an MHA from Cornell; and a BA in English from William & Mary. Research interests include hospice and palliative care, and dementia care.

WAZ Bio Pic 2022
Adult Day Services Use of Common Data Elements

William Zagorski

Research Committee Chair and Board Chair
National Adult Day Services Association
C.E.O. of American Senior Care Center, Inc.

Bill Zagorski is the C.E.O. of American Senior Care Center, Inc. overseeing Centennial Adultcare Centers’ three Adult Day Health Care centers, home care, and transportation services, serving adults throughout middle Tennessee. He also serves as the Research Committee Chair and the Board Chair of the National Adult Day Services Association and the President of the Tennessee Association of Adult Day Services and the Tennessee Federation for the Aging. In addition to these roles, Bill serves on the boards of the Tennessee Coalition for Better Aging, the BOLD Public Health Center of Excellence for Dementia caregiving, and the Alzheimer’s Association Center for Dementia Respite Innovation, and the Tennessee Dementia Action Collaborative, among others!

Kueppers Phs
Creating and Advancing Caregiving Research and Evidence Network (CARE Network)

George Kueppers, PhD

Senior Research Manager
National Alliance for Caregiving
Washington, DC

Dr. George Kueppers is a Senior Research Manager at the National Alliance for Caregiving. Dr. Kueppers is a trained health communication scientist, whose research has spanned social scientific investigation of healthcare-related phenomena from mental health help-seeking behavior to preventative and palliative cancer care to healthcare policy advocacy and beyond. Dr. Kueppers received Bachelors degrees in Political Science (Healthcare Policy) and International Relations from Concordia College in Moorhead, Minnesota, before pursuing a Masters and a PhD in Health Communication at George Mason University, where he also taught communication courses and served as a graduate research assistant for a grant-funded public health research project through the National Institute on Drug Abuse (NIDA). After finishing his PhD, Dr. Kueppers completed a Postdoctoral Research Fellowship at the National Cancer Institute of the National Institutes of Health (NIH), where he was assigned to various research projects within the Health Communication and Informatics and Health Behaviors Research Branches, including studying communication among healthcare providers, cancer survivors, and cancer caregivers, as well as the unique health information needs of cancer survivors and cancer caregivers.

Vegas Laura
National Core Indicators

Laura Vegas

Director of Quality Initiatives and Supporting Families
National Association of State Directors of Developmental Disabilities Services (NASDDDS)

Laura is the Director of Quality Initiatives and Supporting Families for the National Association of State Directors of Developmental Disabilities (NASDDDS). The NASDDDS mission is to assist member state agencies in building person-centered and culturally and linguistically appropriate systems of services and supports for people with intellectual and developmental disabilities and their families. Laura has worked in the IDD supports field for more than 30 years and is passionate about supporting people with IDD and their families to live the lives they choose. Laura is also skilled in supporting systems to develop quality improvement systems which include developing measures, data collection, analysis, trending and developing quality improvement projects.

Lisdsay DuBois
National Core Indicators

Lindsay DuBois, PhD, MPH

Research Associate
Human Services Research Institute (HSRI)

Lindsay is a research associate whose work is driven by a passion for collaborative, inclusive research to promote equity and support people to thrive in their communities. Lindsay is particularly dedicated to working with disability service systems staff to identify opportunities for improving the quality of services. Lindsay is also highly skilled in communicating research findings in accessible and meaningful ways to different audiences.

Prior to joining HSRI, Lindsay was a project manager at the Shirley Ryan AbilityLab, where her work addressed improving person-centered supports for people who use home and community-based services. Prior to that, Lindsay worked as Director of Research and Evaluation on health programming at Special Olympics.

October 29, 2024: Engaging Respite Programs in Research and Evaluation

Developing Research-Ready Respite Services - ARCH Innovative and Exemplary Respite Services Evaluation Grantees

facilitated by Susan Janko Summers, PhD, ARCH National Respite Network and Resource Center

Susan's Mug Shot

Susan Janko Summers, PhD

Senior ARCH Research Consultant
ARCH National Respite Network and Resource Center

Susan Janko Summers, Ph.D, is a former associate director of a University Center on Excellence in Developmental Disabilities and is an expert qualitative research and evaluation consultant with more than 35 years of experience. She is the principle or co-author author of several ARCH reports, including Advancing Respite Research – Findings from the Respite Research Summit; Sustaining Lifespan Respite Systems: Lessons Learned and Practical Applications; In Support of Caregivers: Key Accomplishments of Lifespna Respite Programs Grantees, and The Role of Respite in the National Strategy to Support Family Caregivers: An ARCH Policy to Practice Brief. Dr. Summers facilitates the ARCH Sustainability Learning Collaborative, and oversees ARCH’s Innovative and Exemplary Respite Services Practice and Evaluation initiatives and the Lifespan Respite Grant activities database.

Elaine Whitford Headshot

Elaine Whitford

Executive Director
Center for Volunteer Caregiving
Cary, NC

Elaine joined The Center as Executive Director in June 2018, bringing 20+ years of nonprofit leadership. Immediately before joining The Center, she was the Director of Development at Disability Rights North Carolina. As a volunteer and a professional, Elaine has led many successful nonprofit communications, development, and events activities. She is an enthusiastic proponent of The Center's volunteer services, which support the growing needs of Wake County older adults, family caregivers, and adults with disabilities who are living independently. Elaine graduated from the University of North Carolina at Chapel Hill with a bachelor’s degree in Economics and received her juris doctorate from the University of North Carolina School of Law.

Amy Vega

Amy Knapton Vega, MSW

Executive Director
Vanessa Behan
Spokane, WA

Amy Knapton Vega is the Executive Director at Vanessa Behan in Spokane, Washington. Amy started by working graveyard shifts caring for children at Vanessa Behan. After receiving her Master’s in Social Work, she ran the children and parenting programs for eight years and in 2006 became the Executive Director.  Vanessa Behan is an organization focused on ending child abuse and neglect in Spokane. In 1982, two year old Vanessa Kay Behan lost her life to child abuse in her own home. Outraged by this tragedy, a local businessman vowed to create a grassroots solution in an effort to prevent another child injury or death. Vanessa Behan opened its doors in 1987 and has provided safety to over 100,000 children. As an organization that is privately funded, they are perfectly designed to meet the growing and changing needs of children and parents in their community.

H Kim

Hyuntae Kim, MSW

Program Director
James Madison University Claude Moore Precious Time
Harrisonburg, VA

Hyuntae is currently the program director at James Madison University’s Claude Moore Precious Time, a pediatric respite care program located in Harrisonburg, Virginia. He is a Licensed Clinical Social Worker and graduated with a Bachelor’s in Social Work from California State University Los Angeles and a Master’s in Social Work from the University of Washington – Seattle. After receiving his MSW, he taught English as a Second Language in South Korea for nearly 5 years before returning to the U.S. In addition to his teaching experience, Hyuntae has worked as a social worker for the Department of Health & Human Services and the Department of Veterans Affairs.

Emerging National, State, and Local Respite Services Evaluations  

Moderated by Kim Whitmore, PhD, RN, Marquette University, ARCH Research Consultant

Banner Rebecca Utz 2
Center for Dementia Respite Innovation Evaluation Plan

Rebecca Utz, PhD

Associate Dean of Research and Graduate Education
Professor, Department of Sociology, College of Social and Behavioral Science
University of Utah

Dr. Utz is a Professor of Sociology and currently serves as the Associate Dean of Research at the University of Utah. She is a life course sociologist, embracing the interdisciplinary traditions of demography and gerontology. Research interests focus on how families cope with the end-of-life experiences - such as widowhood, caregiving, and advance care planning - with a particular interest in how families manage and cope with Alzheimer's Disease and Related Dementias.

Gaugler Joe
Center for Dementia Respite Innovation Evaluation Plan

Joseph Gaugler, PhD

Director
Center for Health Aging & Innovation
Division of Health Policy and Management
School of Public Health, University of Minnesota

Joe Gaugler is the Robert L. Kane Endowed Chair in Long-Term Care & Aging in the School of Public Health and a Distinguished McKnight University Professor at the University of Minnesota.  He is the Director of the Center for Healthy Aging and Innovation, Director of the national BOLD Public Health Center of Excellence on Dementia Caregiving, Director with Andrea Gilmore-Bykovskyi of the EMBRACE AD/ADRD Roybal Center, and Editor-in-Chief of The Gerontologist. His research focuses on dementia care innovation.

Harrigan Sarah 881 0324
MA 40 Respite Innovation Grants Evaluation

Sarah Harrigan

Senior Consultant
Aging and Disability Services
Public Consulting Group
Boston, MA

Sarah Harrigan has 15 years of experience helping government and nonprofits improve their health and human service programs. Ms. Harrigan currently serves as the Project Manager for the Massachusetts HCBS Grants Management project, where she finalized the development and implementation of 13 separate grant programs funded through HCBS ARPA. This initiative distributed approximately $115 million in funding to more than 300 community agencies across the Commonwealth. In addition to grants administration, Sarah leads the evaluation of 280 community organizations in Massachusetts and Wisconsin who are implementing pilot programs to strengthen and expand HCBS services. Prior to joining PCG, she worked for the State of Rhode Island, where she gained subject matter expertise in Long Term Services and Supports. She led the LTSS eligibility component of an integrated eligibly system transformation, drove the elimination of a 1,200 case backlog and improved LTSS eligibility timeliness from 20% to 95%. She also played a lead role in the strategic planning and implementation of a multi-year LTSS System reform, which redesigned consumer experience for LTSS services by a implementing a No Wrong Door system and conflict free case management. 

Crop Amy Nazaire
MA 40 Respite Innovation Grants Evaluation

Amy Nazaire

Regional Self Direction Manager
Massachusetts Department of Developmental Services
Hathorne, MA

Amy Nazaire is the Northeast Regional Self Direction Manager at the Massachusetts Department of Developmental Services.  She has been working in the field of Intellectual and Developmental Disabilities for over 25 years, and has served in a wide variety of roles ranging from direct support to administration.  In her current role she works with individuals and families who are managing their own supports. ​She has done graduate work in Sociology, Social Policy and Nonprofit Management.  She is also the founder of the Massachusetts Lifespan Respite Coalition and has been Project Director of the Massachusetts Lifespan Respite Grant since its inception in 2010.

L Weiss
EXHALE, The Family Caregiver Initiative Evaluation

Linda Weiss, PhD

Senior Researcher
Center for Evaluation and Applied Research
The New York Academy of Medicine

Linda Weiss, PhD, is a Senior Researcher, and was the founding director of the Center for Evaluation and Applied Research at The New York Academy of Medicine. She has more than 25 years of experience working with a broad range of community-based organizations, governmental agencies, academic institutions, and foundations to plan, assess, and support initiatives that seek to improve health and well-being. Her projects have focused on a wide range of topics, including respite for caregivers of older adults; immigrant access to health and social services; addressing the social determinants of health; healthcare-community partnerships to promote health and reduce inequities; mentoring to support educational success and career development; and community-based initiatives to prevent and manage infectious and chronic disease. Linda has a doctorate in anthropology from Columbia University, where she received a Fulbright Fellowship to carry out research in Nepal.

October 30, 2024: Cultural and Linguistic Competence in Respite Research and Evaluation

Culturally and Linguistically Competent Respite Research from the Field

Laurenparker Portrait 1
Research on Cultural Adaptation of Adult Day Services

Lauren J. Parker, PhD, MPH

Associate Scientist
Department of Health, Behavior and Society
Johns Hopkins Bloomberg School of Public Health

Dr. Lauren J. Parker is an Associate Scientist in the Department of Health, Behavior and Society at Johns Hopkins Bloomberg School of Public Health. Her research examines how home-and-community based supports can be used to address the cultural needs of African American and Hispanic caregivers for people with dementia. With funding from the National Institute on Aging (NIA), she examines the influence of adult day services on physiological and psychosocial stressors for African American caregivers. This emerging line of research integrates both biological and psychosocial indicators of stress. Another area of scholarly interest is to disseminate and implement culturally tailored stress-reduction interventions into real world settings. A such, previously served as the Co-Investigator on two NIA-funded research studies to culturally adapt the Adult Day Service (ADS) Plus program for Spanish-speaking and African American caregivers.

Dr. Parker also serves on the Leadership Core/Health Equity Task Force of the Center for Disease Control Building Our Largest Dementia (BOLD) Infrastructure, Public Health Center of Excellence (PHCOE) in Dementia Caregiving at the University of Minnesota. She also serves on the Research Committee of the National Adult Day Service Association.

Crop KMD
Community-Engaged Research

Kadijha N. Marquardt-Davis, MSW

ECCHO Program Director/Director of Advocacy & Civic Health
ECCHO - Engaging Communities to Change Health Outcomes

Kadijha Marquardt-Davis is the Founder and Program Director of ECCHO (Engaging Communities to Change Health Outcomes) a civic engagement training program that seeks to improve community health outcomes by engaging those most impacted by generational and systemic racism in Dane, Milwaukee, and Rock County in Wisconsin.

Kadijha currently serves on UW-Madison's School of Social Work Board of Visitors and she recently received the 2023 Athena Young Professional Award, which recognizes emerging leaders between the ages of 25 and 40 who strive for the highest levels of personal and professional accomplishment, devote time and energy to their community, and serve as role models for young women.

Respite Experiences of Family Caregivers of Children who are Latinx

presented by Kim Whitmore, PhD, RN, Assistant Professor, College of Nursing, Marquette University, Milwaukee, WI

Philanthropy’s Role in Advancing a Respite Research Agenda that Addresses the Diverse Needs of Family Caregivers

Rani's Headshot

Rani Snyder, MPA

Vice President, Program
The John A. Hartford Foundation

Rani E. Snyder, MPA, is a national leader and collaborator, serving as Vice President, Program at The John A. Hartford Foundation. Ms. Snyder has over 25 years of experience working with preeminent health care institutions across the nation improving the care of older adults, identifying and guiding health care programs that have set the standard for medical best practices, increased medical education opportunities, and maximizing resources to improve health care broadly. She brings that experience to The John A. Hartford Foundation where she coordinates initiatives that foster collaboration among academic institutions, health systems and community-based organizations to build Age-Friendly Health Systems, support family caregivers, and improve serious illness and end-of-life care. She also serves as a board member for the American Society on Aging, a nonprofit leading the largest, most diverse community of professionals working in aging in America; the Elder and Home Care Committee of MidCoast Hospital in rural Maine, and is the past Board Chair of the Board of Grantmakers in Aging, a membership organization comprised of all types of philanthropies with a common dedication to improving the experience of aging; as a fellow of the New York Academy of Medicine; and she previously served as a Volunteer Long-Term Care Ombudsman for the State of Nevada Aging and Disability Services Division.

Genewick Ken

Ken Genewick, MBA

Vice President of Programs
Health Foundation for Western and Central New York

Ken Genewick serves as vice president of programs for the Health Foundation for Western & Central New York. He joined the Health Foundation in 2018 in the newly created role of program officer for caregiving through a partnership with the Ralph C. Wilson Jr. Foundation.

In his role as vice president of programs, Ken supervises the program team as they work to develop and implement community partnerships and programs that support the Health Foundation’s mission and vision. Ken also continues to develop and support programs that recognize and address the unique challenges and needs of caregivers for older adults.  With diverse private and public sector experience, he brings to the foundation a unique perspective on aging and caregiving and its impact on both people and systems.