Stephanie Summerville, Musical Theater Performer and Storyteller, New York, NY
Stephanie Summerville is an New York-based actress, speaker and storyteller, most known for work with the Moth, a live storytelling events organization, and The Moth Radio Hour on National Public Radio. Her stories have been published in major publications across 5 continents in four languages.
Most recently, her stories have been featured in The Huffington Post UK edition, and on the BBC Radio Program Outlook. When not circling the globe on cruise ships as a speaker and performer, she lives as a nomad, declaring home to be “wherever I hang my hat.”.
Sister Edna Lonergan 2019- 2020 AARP Purpose Prize Winner
Founder and President, St. Ann Center for Inter-generational Care, Milwaukee, WI
As a nurse, occupational and massage therapist and gerontologist, Sr. Edna Lonergan is a leading advocate promoting the benefits of intergenerational programs. Through her vision and guidance, St. Ann Center became the first dementia-specific day care in Milwaukee and one of the first fully integrated intergenerational day cares in the United States – serving children, frail elders and adults of all ages with disabilities and their caregivers in one home-like setting. Since opening St. Ann Center’s Stein Campus on Milwaukee’s south side in 1999, she replicated the center at the Bucyrus Campus, opened in 2015, on the city’s near north side – one of the most economically challenged and underserved areas of Milwaukee.
St. Ann Center for Intergenerational Care, sponsored by the Sisters of St. Francis of Assisi, reflects Franciscan values in meeting the spiritual, physical, psychological and social needs of all who participate, regardless of faith, culture or ability to pay. Sr. Edna’s credo for those in here care: “It doesn’t matter what age they are…Everyone needs a sense of purpose.”
To read Sr. Edna Lonergan’s full biography, please click here.
Dr. Vibha Krishnamurthy, Founder and Executive Director, Ummeed Child Development Center, Mumbai, India
Vibha Krishnamurthy is a Developmental Pediatrician with 21 years of experience in working with children with disabilities and their families in India. She trained in Developmental Pediatrics at Children’s Hospital, Boston, and founded Ummeed Child Development Center in 2001 where she is currently the Executive Director. Ummeed is one of India’s leading not for profits that works with children with disabilities and their families. She has led the team at Ummeed in it’s delivery of services, training, advocacy and research in the field of child development and disability. She serves as an expert on Early Childhood Development and Disability for the Government of India, WHO and UNICEF. She is the past President and Board member of the International Developmental Pediatrics Association.
International Respite Policy Panel
The International Respite Policy Panel will focus on respite care/short break and family caregiver policies, including the impact of worldwide changing demographics, family caregivers in the workplace, and the global shortage of direct care workers. Panelists will offer insights on successful current respite and caregiving policies in their countries, examine the challenges that impede policy development and implementation, and describe progress being made to overcome those challenges.
Jon Bartholomew, AARP, USA
Jon Bartholomew is a Senior Legislative Representative for AARP’s Government Affairs Team. In this role, he assists AARP state offices with health care policy. Prior to this position, he was the Government Relations Director for AARP Oregon for five years. His experience also includes serving as the Public Policy Director at the Alzheimer’s Association Oregon Chapter, where he coordinated the creation of the State Plan for Alzheimer’s disease in Oregon. He has worked in public policy for 24 years, working on issues such as after-school program funding and media reform. Originally from Pennsylvania, he earned his Master’s in Public Administration at the University of Washington.
Joseph Caldwell, PhD, Senior Scientist and Director, Community Living Policy Center, Lurie Institute for Disability Policy, Brandeis University
Dr. Caldwell has over 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 person and family-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. Dr. Caldwell has served on the boards of the National Alliance for Caregiving and Consortium for Citizens with Disabilities. He currently is an appointed member of the RAISE Family Caregiving Advisory Council.
Jo Chopra-McGowan, Latika Roy Memorial Foundation, India
Jo Chopra McGowan is an American who has lived in India for the past 42 years. She and her husband Ravi have three children, the youngest of whom – Moy Moy – was disabled. Jo is the founder and director of the Latika Roy Foundation, a leading non-profit in Dehradun, India which is dedicated to providing services to disabled children and adults. Moy Moy died in 2018 but her memory lives on in the Foundation.
Jo is a writer who has authored five books and hundreds of essays and articles in major US and international publications.
Piotr Kuzniak, Imago Foundation, Poland
Over the last 13 years, Piotr developed skills as a social project manager (an author of 11 transnational and 22 national projects dedicated to persons with disabilities and their families). Since 2009, he’s been running his own foundation – an expert organization in cross-sector initiatives. Especially interested in transnational cooperation and short break development projects, Mr. Kuzniak is responsible for coordinating international and national work groups, organizing workshops and seminars in the field of short breaks, and networking and creating links between local administration and NGOs. He has authored numerous reports, research studies and articles, and has participated in multiple ISBA conferences in Wolfenbuttel, Edinburgh, and Reykjavik
Janet Leach, Contact, United Kingdom
Janet is currently a Trustee and Director of Contact a national charity for families with disabled children. Janet has worked in the field of disability for over 40 years, qualifying as a social worker in 1984. Janet recently completed an MSc in Voluntary Sector Management researching into the impact of poverty on disability. Janet has extensive board and leadership experience and has championed parent partnerships throughout her career. Janet enjoys being on the ISBA committee, sharing ideas – and much laughter – whilst learning from colleagues around the world.
Emma Miller, University of Strathclyde, Scotland
Emma Miller has been a senior research associate at Strathclyde since 2012 and was previously attached on an honorary basis from 2009. Emma has a background in social work practice, and interagency working. Since completing her PhD in 2004 she has worked between research, policy and practice on the theme of personal outcomes. Based on knowledge exchange and action research, this has focused on embedding an outcomes approach to practice and has involved partnership between a wide range of national bodies and local organisations to re-orient culture, systems and practice accordingly. The primary purpose of this work is to support outcomes focused and person centred engagement at the frontline, with a secondary purpose to measure outcomes and use this information for service planning and improvements. In the past few years, the work has drawn increasing interest from wider UK and international universities and agencies.
Catharine Shanahan, Family Respite Services Windsor-Essex, Canada
Catharine Shanahan is the Executive Director of Family Respite Services in Windsor Ontario, Canada. Family Respite Services supports over 1200 children with disabilities, providing a wide spectrum of in-home, out-of-home and community-based respite supports. Catharine has been a member of the ISBA committee since 2010. Ms. Shanahan chairs the Provincial Respite Network in Ontario and is a member of the Leadership group for “Supportyourway-respiteservices.com”.
International Global Response to Respite and Caregiving in a Post-Pandemic World Panel
Amanda Batten, Contact, United Kingdom
Amanda is Chief Executive of Contact, the charity for families with disabled children. She joined the charity as Chief Executive in May 2014. Amanda founded and Chairs the Disabled Children’s Partnership, a coalition of over ninety organisations campaigning for improved health and social care for disabled children, young people and their families. Amanda has worked in the disability sector for 15 years and contributes to a range of advisory boards and national partnerships. She is a Fellow of the Royal Society of Arts.
Amy Coupal, CEO, The Ontario Caregiver Organization, Canada
Amy Coupal is the CEO of the Ontario Caregiver Organization (OCO) in Ontario Canada. OCO is a non-profit that was formed in 2018 to support Ontario’s 3.3 million caregivers. A visionary leader with 15 years of experience in the not-for-profit sector, Amy has extensive experience building organizations from the ground up and is excited to be leading the Ontario Caregiver Organization through its early days of growth. She has held a number of CEO roles, including CEO of Learnography and My Class Needs Foundation, and has expertise in the latest innovations and technologies related to learning and education. Amy is passionate about mobilizing change through knowledge sharing and building collaborative initiatives that positively impact the lives of individuals and communities.
Amy has a Masters of Education from the University of Calgary and is an Adler-trained coach. Her insights have been shared through speaking and media engagements, both internationally and here in Canada.
Amy has a deep understanding of the benefits and challenges associated with caregiving. As a caregiver for most of her life, Amy helped to support her brother who had Cerebral Palsy. She was also a caregiver to her mother throughout her cancer journey and now supports her elderly father.
Jaia Peterson Lent, Deputy Executive Director and Co-Director of the National Center on Grandfamilies, Generations United, USA
Jaia Peterson Lent is the Deputy Executive Director at Generations United, a national advocacy organization based in Washington, DC, where she has worked since 2000. Generations United’s mission is to improve the lives of children, youth and older people through intergenerational collaboration, public policies, and programs. Lent is a co-director of the National Center on Grandfamilies, a leading voice for families headed by grandparents or other relatives. She is a trusted voice on Capitol Hill on issues related to grandfamilies and intergenerational cohesion. She has testified before the U.S. Senate Special Committee on Aging and serves as cochair of the federal Advisory Council to Support Grandparents Raising Grandchildren. She is a sought-after speaker, nationally recognized columnist and blogger and respected media resource. She has been named one of the Top 50 Influencers in Aging by Next Avenue. Under her leadership, legislation has passed to support grandfamilies in areas ranging from housing to family caregiving to child welfare. Lent holds an MSW from Syracuse University and is a licensed social worker.
Grace Whiting, J.D., President/CEO, National Alliance for Caregiving, USA
Grace followed in the footsteps of the National Alliance for Caregiving Founder Gail Gibson Hunt to helm one of the nation’s leading public policy and advocacy organizations for friend and family caregivers. With previous experience as COO and the Director of Strategic Partnerships, Grace doubled the organization’s budget in her tenure to date and created the Hunt Research Program.
Grace led the nation’s first national policy study of 1,400+ rare disease caregivers with Global Genes. She has led other original NAC research including Sandwich Generation in the U.S. with Caring Across Generations; A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis with the Crohn’s and Colitis Foundation and ImproveCareNow; Cancer Caregiving in the U.S. with the National Cancer Institute and Cancer Support Community; and Dementia Caregiving in the U.S. with the Alzheimer’s Association, among others.
Grace has spoken on caregiving at several national and international conferences and also served as a resource to major media on the topic of caregiving and aging, including C-SPAN, The Wall Street Journal, Time Magazine, Oprah Magazine, Women’s Health Magazine, and Kiplinger’s Retirement Report.
Don Williamson, Chief Executive, Shared Care Scotland, Scotland
Don has been Chief Executive of Shared Care Scotland since January 2006. Prior to this he was the Programme Director in Edinburgh for Common Purpose, an international leadership development charity, and before this was eight years with The Duke of Edinburgh’s Award, latterly as Deputy Director for Scotland. Don has also worked in the outdoor education and natural heritage sectors. Between 2014-16 he served as President of the International Short Breaks Association, as part of Shared Care Scotland’s hosting of the 10th International Short Breaks conference in Edinburgh in 2016. In a voluntary capacity, he serves on the Board of the Green Team, an Edinburgh-based environmental youth work project.
Wisconsin Alzheimer’s Institute “Amazing Grace” Chorus®
The Wisconsin Alzheimer’s Institute’s “Amazing Grace” Chorus® is a Milwaukee-based diverse Chorus made up of people living with dementia and their Caregivers. The Chorus serves to improve the “quality of life” of its participants through socialization and music, and provides education and assistance to connect families to Alzheimer’s supportive care resources, and respite opportunities. The Chorus premiered in 2014. To learn more visit: wai.wisc.edu/chorus