The Family Caregiving Advisory Council
The impact of the nation’s aging population on state budgets and policies cannot be addressed without understanding the needs of family caregivers. Under the RAISE Act, the Secretary of the Department of Health and Human Services must develop a national Family Caregiving Strategy that recommends actions that different stakeholders can take to support family caregivers and meets their diverse needs. The RAISE Act also requires the secretary to convene a Family Caregiving Advisory Council to help inform and shape the strategy by providing recommendations to the secretary.
The council is charged with preparing a report for the secretary that includes effective models of family caregiving and support to family caregivers, as well as opportunities to improve coordination across federal government programs. The secretary will incorporate the council’s report in the strategy, in addition to identifying best practices and other information to support family caregivers. The RAISE Act requires the council to be made up of to 15 voting members who reflect the diversity of family caregivers and care recipients, as well as non-voting representatives from federal departments and agencies who play a role in this issue.
Ben Bledsoe, MHA, President/CEO of the Consumer Direct Care Network, developed his expertise in home and community-based services through education, experience, and hard work. After obtaining his bachelor’s degree from the University of Virginia, he completed two years of Peace Corps service in Tonga, then went on to receive a master’s degree in health administration. He started his career at Consumer Direct Care Network as a caregiver in 2004, and quickly applied his compassion for people and interest in business efficiencies to roles across the company. He led the company’s quality assurance team, managed human resources, and initiated and managed new programs to bring more self-directed services to the states the company serves. In 2012, Bledsoe was named CEO and has directed the company’s vision and goals since then.
His unique background in homecare gives him a comprehensive understanding of service provision. His international, executive, and practical field experience has helped Consumer Direct Care Network thrive as today’s self-directed home care leader. Bledsoe remains committed to ensuring all individuals have choice and control over the lives they lead.
Joe Caldwell, PhD, is director of the Community Living Policy Center at the Lurie Institute for Disability Policy, Brandeis University. He has more than 25 years of experience in the fields of aging, disability, and family caregiving as a researcher, policy expert, and family member. His research has focused on supports for aging caregivers of adults with developmental disabilities, outcomes of self-directed supports, and promising practices in family support across the lifespan and disability populations. Prior to Brandeis, he worked to advance federal long-term services and supports policy at the National Council on Aging, Association of University Centers on Disabilities, and as a Joseph P. Kennedy, Jr. Fellow on the Senate Health, Education, Labor, and Pensions (HELP) Committee. He also has experience as a direct support professional and supports coordinator for individuals with disabilities and their families. Caldwell has served on the boards of the National Alliance for Caregiving and Consortium for Citizens with Disabilities. He is the proud stepfather of a young adult and artist with Down syndrome.
Diane Caradeuc is a federal retiree, having worked 30 years for the Social Security Administration and the Centers for Medicare & Medicaid Services. She served in various roles, from entry level analyst to senior management, and provided direct assistance to Social Security and Medicare beneficiaries. At retirement, Diane was the associate regional administrator of Medicare in the San Francisco Regional Office.
Following retirement, Caradeuc worked for the Senior Medicare Patrol program for eight years, assisting beneficiaries and educating the public regarding Medicare fraud. During this time, she was a volunteer with the California State Health Insurance Program (SHIP), assisting the public in understanding the complexities of Medicare and providing information for making informed heath care decisions. She continues to volunteer with SHIP.
She also took on the honor of being her mother’s full-time caregiver for the last 12 years of her life. Over the years, her mother developed dementia and needed increased care.
Caradeuc sees individuals living to be 100 years old more frequently than when she started her federal career, and this often requires families to take on the role of caregiver. For families to be willing and effective caregivers, more tools and resources must be available. She sees the Family Caregiver Council as a practical means to identifying these tools and resources. Prior to her government service she was an elementary school teacher, having received her teaching certificate, as well as college degrees from the California university system.
James S. Cheely is a project manager with a General Contracting company from Glasgow, Kentucky. He has been married to his amazing wife, Bonnie, for 37 years, and is the father of two sons, Bryan and Kevin, the oldest of whom is a 31-year-old with an intellectual and developmental disability. His daughter-in-law, Chelsea, joined the family 16 months ago.
Cheely feels privileged to serve as the volunteer coordinator/coach of Special Olympics in his community (Barren County Flames) for the past 18 years and has been involved locally, regionally, across the state, and nationally. He feels fortunate to have learned so much through Advocates in Actions of the Arc of Kentucky and to have served as the president of the Arc of Kentucky for four years, and as the president of the Barren County Arc for two terms. This allowed him to participate in local, state, and national advocacy efforts. Cheely recognizes that it’s a daunting challenge to represent others and help them with their struggles.
He has been blessed to meet many individuals and families living with intellectual and developmental disabilities. He has seen the impact providing lifetime care has on families and the individuals to whom care is provided. Cheely is honored to serve on this panel – representing fellow Kentuckians, and importantly, all families across our country who provide care for someone they love.
Jisella Dolan serves as global chief advocacy officer for Home Instead Senior Care,® the world’s leading provider of home care services. She is a member of Home Instead’s Executive Team and leads its advocacy division, which is dedicated to advocating for aging adults and their families, ensuring a quality care experience, and shaping aging and home care policy around the world. She also helps lead Home Instead’s diversity and inclusion work.
Dolan serves as strategy officer for the World Economic Forum and on its Global Council for the Future of Health Care. She is Home Instead’s representative to the Global Coalition on Aging and serves on the Home Care Association of America’s Strategy Committee. She is a member of the Women’s Leadership Council for Women Against Alzheimer’s. She regularly represents Home Instead on the topic of family caregiving at global events, in the media and at speaking engagements.
Before joining Home Instead, Dolan was a partner with a global law firm where she led the firm’s True North and INROADS programs, dedicated to enhancing women and minority career opportunities in the law. She graduated from the University of Nebraska’s College of Law and was a member of Order of the Coif, the Nebraska Law Review, and Phi Beta Kappa.
The challenges of family caregiving hit home for Dolan, as she is raising her young daughter while also providing caregiving support to her family — first her late father, and now her mother and stepfather who has dementia.
Brenda Gallant, RN, is Maine’s state long-term care ombudsman and the executive director of the Maine Long-Term Care Ombudsman Program. The program provides advocacy for residents in long-term care facilities, recipients of home care services and patients in hospitals who experience barriers in accessing long-term services and supports. Additionally, the program provides advocacy for residents transitioning from nursing homes back to the community through Money Follows the Person. In October 2017 the AARP Public Policy Report: State Strategies to Reduce the Risk of Long-Term Nursing Home Care after Hospitalization noted Maine’s Long-Term Care Ombudsman’s advocacy and assistance through Money Follows the Person as a promising practice.
In response to concerns about staffing in Maine nursing homes, Gallant was successful in getting legislation passed to improve staffing ratios. Additionally, she led efforts to get legislation passed requiring employment bans for CNAs based on criminal convictions, as well as other legislation that improves access to and the quality of long-term care. Most recently, she worked with legislators to pass a bill allowing spouses to be paid for the care they provide under Maine’s Medicaid waiver program.
Over many years, she has worked with older adults, adults with disabilities, and family caregivers to resolve problems with long-term services and supports. As a result, she greatly appreciates the important and often challenging role of family caregivers. These experiences have informed her systemic advocacy efforts and those of the Ombudsman Program.
Gallant currently serves as a member of the national Consumer Voice Governing Board.
Catherine Alicia Georges, EdD, RN, FAAN, was elected by the AARP Board of Directors to serve as AARP’s national volunteer president from June 2018 to June 2020. The president’s role is filled by an AARP volunteer, who is also a member of the AARP Board of Directors. The primary duty of the president is to act as the principal volunteer spokesperson and liaison between the board and those AARP serves — adults 50 and older and AARP’s members and volunteers — engaging with these groups to promote the mission and strategic goals of AARP and to hear their perspectives.
In addition to her duties representing AARP, Georges is professor and chair of the Department of Nursing at Lehman College and The Graduate Center of the City University of New York. She is president of the National Black Nurses Foundation. Previously, she was a staff nurse, team leader, supervisor, and district manager for the Visiting Nurse Service of New York. She serves on the Board of the Black Women’s Health Study and R.A.I.N., Inc.
A passionate advocate for family caregivers, Georges was the primary caregiver for her husband during the last 16 years of his life as he battled Parkinson’s disease. She earned her undergraduate degree from the Seton Hall University College of Nursing, her master’s in nursing from New York University and a doctoral degree in educational leadership and policy studies at the University of Vermont. She resides in the Bronx, NY.
Rhonda J.V. Montgomery, PhD, is a family caregiver who is also an internationally recognized scholar on aging and a cofounder of TCARE, Inc. She earned her PhD at the University of Minnesota. She has held research and administrative positions at University of Washington in Seattle, Wayne State University, and University of Kansas. She was appointed as the first Helen Bader Endowed Chair in Applied Gerontology at the University of Wisconsin-Milwaukee where she is an emeritus professor in the School of Social Welfare.
Montgomery has conducted more than 40 funded regional and national studies focused on public policy and the role of family in long-term care and has published more than 100 articles and books. She is a fellow in the Gerontological Society of America. She has received numerous awards, including the 2010 Rosalyn Carter Award for Leadership in Caregiving and the American Society on Aging’s 2016 Gloria Cavenaugh Award for Excellence in Education and Training.
Montgomery has served on the board of directors for several community organizations that provide services to older adults, including the board of directors of the National Alzheimer’s Association. For the past decade, she has collaborated with state and local organizations and thousands of family caregivers to develop and test a care management process used by professionals in the health care industry to support family caregivers. Currently, she is working with the TCARE team to adapt the protocol for wide use by large enterprise organizations that insure and/or employ family caregivers.
Nancy Murray, MS, is the president of The Arc of Greater Pittsburgh at ACHIEVA. She has 40 years of experience in the disability field in the areas of public policy, advocacy, family support, supports coordination, health care, and state government. Murray’s primary area of interest and study is the resilience of families of children and adults with disabilities and the long-term impact of caring for a person with a disability on a family. She has conducted numerous seminars and has written numerous articles for families and professionals on disability issues.
She is the project director of ACHIEVA’s Disability Healthcare Initiative, which is focused on access to health care for people with disabilities. She also serves on the board of directors of the Pennsylvania Assistive Technology Foundation, the Pennsylvania Medical Assistance Advisory Council, and numerous committees through the Pennsylvania Office of Developmental Programs. She is also a member of the National Council of Executives of The Arc and the PA Executives of The Arc. She has served as a founder and coordinator of the Down Syndrome Center at Children’s Hospital (UPMC) of Pittsburgh, the director of supports coordination at Staunton Clinic in Pittsburgh, and the western area director of the Office of Developmental Programs in Pennsylvania.
James Murtha, MSW, is a 30-year-old Michigan native, born in Saginaw. He is a Catholic school product of Saginaw Nouvel Catholic Central High School, earned a Bachelor of Arts in biology from Adrian College, and is a 2018 alum from University of Michigan (graduate) school of social work.
He works as a mental health therapist with Amplify Colectivo, a Michigan-based counseling clinic with offices in Ann Arbor and Ypsilanti, as well as virtual counseling. In the summer of 2018, James started working with Wareologie, a southeast Michigan-based start-up business that makes adaptive clothing and assistive technology. Wareologie will bring its first product, Buttons 2 Button, to market this coming Christmas.
Murtha was inspired to get involved with peer mentorship, community education, and policy advocacy concerning people with disabilities (particularly for people who use wheelchairs and those living with paralysis) by the Christopher and Dana Reeve Foundation.
James injured his spinal cord after breaking his neck in a headfirst fall off a mountain bike in 2014 in Snowmass Village, CO. He was diagnosed with C4 incomplete quadriplegia. He uses a power chair to get around and has set out to make the most of his life situation since his rehabilitation following the injury.
Casey R. Shillam, PhD, dean and professor of the University of Portland School of Nursing, is a nurse specializing in palliative care, a veteran of the US Air Force, and the daughter and granddaughter of veterans. Shillam’s research focuses on supporting care coordination and chronic care management for older adults with serious illness. Her experience caring for her father after a serious accident furthered her commitment to caring for older adults and her dedication to family caregiving and supporting aging veterans in their homes.
Since her appointment to the University of Portland in 2015, she guided the complete revision of the BSN program of study, moving from a traditional, specialty-focused curriculum to a concept-based curriculum. She has launched a new major in integrative health and wellness studies, and she developed a state-of-the-art simulation center to provide high-quality clinical learning for students in acute, ambulatory, and population- health nursing courses.
Shillam holds a BA from Portland State University and BSN, MSN, and PhD degrees in nursing from Oregon Health & Science University. She completed a postdoctoral fellowship at the Betty Irene Moore School of Nursing at UC Davis, taught at Johns Hopkins University School of Nursing, and founded a nursing program at Western Washington University. She served as an expert nurse consultant to Future of Nursing: Campaign for Action, is an alum of the Robert Wood Johnson Foundation’s Executive Nurse Fellows program, and currently serves on the American Association of Colleges of Nursing’s Health Policy Advisory Council.
Alan B. Stevens, PhD, holds the Vernon D. Holleman-Lewis M. Rampy Centennial Chair in Gerontology at Baylor Scott & White Health (BSWH). Stevens is a professor of medicine and public health at the Texas A&M Health Science Center (TAMHSC). He serves as the director of the Center for Applied Health Research (CAHR), which is administratively located in the Baylor Scott & White Research Institute (BSWRI).
His research interests focus on the establishment, translation, and implementation of evidence-based health programs for older adults. With more than 25 years’ experience in academic medical schools and a leading integrated health care organization, he has made significant contributions to the fields of dementia care, family caregiving, care transitions, and management of chronic diseases. Stevens’ contributions are unique, as his implementation research methods are built on partnerships between health care delivery organizations and community-based organizations, with the goal of designing projects that are person and family-centered and focused on outcomes that are meaningful to the multiple stakeholders engaged in promoting the health of older adults.
He has received competitive grant funding from the four Institutes within the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality (AHRQ), and the state of Texas, and he has partnered with state agencies on multiple projects funded by the Administration for Community Living (ACL). Stevens is a fellow of the American Psychological Association (APA) and the Gerontological Society of America (GSA).
Deborah Stone-Walls has worked in the human services field for more than 30 years and with family caregivers on Maui for more than 20 years. She joined the Maui County Office on Aging in November 2008 as the executive on aging. With her years of administrative experience and direct experience working with Maui’s children, family caregivers, individuals with disabilities, and senior residents, She has a well-rounded knowledge base and passionate commitment to the unique needs of these populations. Her influence extends to both the state and national level. She is a recipient of the Hawaii Pacific Gerontological Society “Na Lima Kokua Ma Waena O Makua” Award for Excellence in Government Service as well as the Hawaii Alliance for Retired Americans and Kokua Council “Shining Light” Award for Excellence in Advocacy. Stone-Walls has been a member of the National Association of Area Agencies on Aging (n4a) board since 2009 and is serving as the current president of the board.
Theresa Tanous served in the US Government for 33 years in the Department of Veterans Affairs. For more than 20 years, Tanous worked at the national level in health care IT. A graduate from the School of Business at Boston College, Tanous received her master of Health Administration from the University of New Hampshire. Her schooling and work experience, as well as avid reading and continuous learning, have helped to prepare her for her second career, that of primary family caregiver for a loved one.
Care duties involve managing her mother’s care and finances coupled with advocating on medical and ethical matters. In her seventh year of caregiving for a frail-elder who has dementia, duties expanded to seeking benefits while managing home health aide contracts and invoices.
Tanous envisions realizing a system that embodies “caring for the caregiver.” The foundation of this “caring system” — where the individualized needs of patient and caregiver are core and the long-term care services and supports serve the dyad — is a framework that states and communities can scale and configure.
Successful implementation of a framework will rebalance the long-term services and supports to serve at-home care for the most at-risk elder population and the caregivers supporting this population. Two elements of the framework include: changes to the care plan are met with one call in one day and respite-on-demand paid by savings realized through proactive measures that reduce Medicaid enrollment.
Carol Zernial, MA, is a nationally recognized gerontologist who was named one of the nation’s Top 50 Influencers in Aging for 2017 by Next Avenue, the digital journalism arm of the PBS System. She holds a master’s degree in social gerontology from the University of the Incarnate Word and has been involved in the field of aging for more than 25 years.
Zernial currently serves as executive director of the WellMed Charitable Foundation and vice president of Social Responsibility for WellMed Medical Management. She is immediate past chair of the board of directors for the National Council on Aging. She is a member of the governor’s Aging Texas Well Advisory Committee, the producer and co-host of the podcast Caregiver SOS on Air, and blogs about the caregiving experience.
Zernial was a delegate to the White House Conference on Aging in 2015 under President Obama and in 2005 under President George W. Bush. She was a staff member to the 1995 White House Conference on Aging under President Clinton. She is the former chair of the National Institute of Community-based Long-term Care, board member for the National Association of Area Agencies on Aging, and vice president of the Texas Association of Area Agencies on Aging.
Zernial is passionate about living while caregiving. Caregivers need choices and the ability to enjoy basic human rights such as work, education, rest, leisure and fun.
Lance Robertson, MPA, RAISE Council Chair
Administration for Community Living
Department of Health and Human Services
Stacy Canan, Assistant Director
Office of Financial Protection for Older Americans
Consumer Financial Protection Bureau
Bruce Finke, MD, Senior Advisor, Office of Quality
Indian Health Service
Department of Health and Human Services
Melissa Gerald, PhD, Program Director
Division of Behavioral and Social Research
National Institute on Aging, National Institutes of Health
Natalie Goodnow, Policy Advisor
Administration for Children and Families
Department of Health and Human Services
Melissa L. Harris, Acting Deputy Director
Disabled and Elderly Health Programs Group
Centers for Medicare & Medicaid Services
Helen Lamont, PhD, Senior Long-Term Care Analyst
Office of Disability, Aging, and Long-Term Care Policy
Office of the Assistant Secretary for Planning and Evaluation
Depatment of Health and Human Services
Lisa McGuire, PhD, Lead
Alzheimer’s Disease and Healthy Aging Program
Centers for Disease Control and Prevention
Sylvia Montgomery, Program Specialist, Division of Family and Consumer Sciences
National Institute of Food and Agriculture
US Department of Agriculture
Jan Newsome, Program Development and Outreach Specialist
Corporation for National and Community Service
Kathryn (Katie) O’Callaghan, Deputy Division Director, Center for Devices and Radiological Health
Office of Strategic Partnerships and Technology Innovation
Food and Drug Administration
Héctor L. Ortiz, PhD, Senior Policy Analyst
Office for Older Americans
Consumer Financial Protection Bureau
Rosemary Payne, MSN, RN, Senior Nurse Consultant
Center for Substance Abuse Treatment
Substance Abuse and Mental Health Services Administration
Mark Vafiades, Senior Advisor
Office of the National Coordinator for Health Information Technology
Office of the Secretary
Department of Health and Human Services
Joan Weiss, PhD, RN, CRNP, FAAN, Senior Advisor
Division of Medicine and Dentistry
Health Resources and Services Administration