Conference Program
Welcome to Albany and to the 2024 National Lifespan Respite Conference!
In 2022, the Administration for Community Living released the first-ever National Strategy to Support Family Caregivers. In keeping with our collective commitment to advance the recommended respite actions in the National Strategy, the theme for the conference is RAISE the Bar for Respite – Strategies to strengthen family caregivers.
The conference will provide the space and energy to lift up best practices in respite care; elevate innovative public and private sector approaches to expand support for working caregivers; escalate new strategies to grow respite capacity to meet the ever-increasing need; step up action to address the direct care workforce crisis; and increase our commitment to person and family-centered respite services for the nation’s more than 53 million family caregivers.
In this conference program, you will find the schedule of plenary and breakout sessions, information about the keynote speakers, and more!
Plenary Session Recordings
Keynote Speaker Presentation Slides
Breakout Session Presentation Slides
Exhale – The Family Caregiver Initiative: Overview, Multisite Evaluation
and a Case Study of Innovative Respite Programming
- John Tyler • Senior Philanthropic Advisor, The Philanthropic Initiative (TPI), Boston, MA
- Linda Weiss • Senior Researcher, Center for Evaluation and Applied Research, The New York Academy of Medicine, New York, NY
- Ann Battaglia • Chief Executive Officer, Healthy Community Alliance, Gowanda, NY
- Ashley Conti • Director of Programs, Healthy Community Alliance, Gowanda, NY
Exhale, The Family Caregiver Initiative, supports innovation and expansion of respite services for caregivers of older adults. Exhale provides project development and implementation funding; a learning community; and assistance in creative problem solving, evaluation, communications, and sustainability. Exhale includes 16 projects in western New York and southeast Michigan. Project models are diverse as re-imagined respite can take many forms; examples include technology supports (home cameras, tablets), wellness activities, and musical programming for caregivers and carees.
New York State’s Caregiver Wellness and Respite Center:
Steering the Wheel towards a Hub and Spokes Model
- Abbey Derepentigny • Caregiver Support Program Assistant Director, New York State, Office for the Aging, Albany, NY
- Mikaela Oliver • Regional Care Navigator, Alzheimer’s Disease Caregiver Support Initiative and Caregiver and Wellness Respite Center, Plattsburgh, NY
- Linda Miller • Vice President of Government Programs, TCARE, St Louis, MO
Tailored Caregiver Assessment and Referral (TCARE) is a care management and planning protocol designed to support family members who are providing unpaid care. When providers identify family caregivers and ask them about their needs, preferences, and willingness and ability to provide support, they gain a better understanding. Learn about the Caregiver Wellness and Respite Center (CWRC) and how its case managers use TCARE and other services and supports to support autonomy and well-being of caregivers.
Release of the Respite Provider Recruitment
and Training Replication Toolkit
- Kim Whitmore • PhD, RN, CPN, College of Nursing, Marquette University, Milwaukee, WI
- Lisa Schneider • Executive Director, Respite Care Association of Wisconsin, Appleton, WI
ARCH National Respite Network and Resource Center, in partnership with the National Academy for State Health Policy and the Respite Care Association of Wisconsin, piloted a competency-based respite provider recruitment and training in ten states. As a result of the pilot, this training is now available to all states. In this session, learn about the results of the pilot and how to build a training and recruitment program for respite providers in your state or community by accessing the new Replication Toolkit.
Why Doesn’t My Family Help?
- Mary Berk • Family Mediator, New York State Caregiving and Respite Coalition (NYSCRC), Rochester, NY
Observe a mediation session among family members who have lots of excuses why they are unable to provide respite and other types of support to the primary caregiver and care receiver. As caregivers, we expect that our family members should be willing to help us when we ask. When they fail to do so we tell ourselves that they are selfish, spoiled, indifferent, uncaring, or worse. You may be surprised as you listen to their side of the story.
PPT Slides
Evolution of the Crisis Nursery:
From Emergency Childcare to Family Preservation Program
- Natalie Leek • President and CEO, Providence House, Cleveland, OH
- Amy Mills • Center for Crisis Nurseries Manager, Providence House, Cleveland, OH
The Providence House Family Preservation Crisis Nursery Model keeps kids safe and families together by embracing them with support to enhance stability that strengthens communities. Participants will learn how their free, voluntary, noncustodial 24/7 crisis respite shelter for children, blended with trauma-informed Family Preservation services for parents/guardians and range of community-based services has evolved into a multi-generational, nationally recognized program that supports crisis intervention, family preservation, hope, and healing for the entire family.
Attracting Attention for Respite from Public Officials
- Adrienne Smith • President and CEO, New Mexico Caregivers Coalition, Bernalillo, NM
This session will explore strategies for building public support for your respite care program in ways that make use of current resources and that set the stage for future state and local funding. This session will describe the various collaborative partnerships and public awareness campaigns that a statewide coalition is using to build support for respite care provider training, recruitment and retention.
A Lawyer? How Adding a Novel Partner to Your Team
Can Improve Outcomes for Caregivers Chambers
- Amanda Nobrega • Vice President of Programs, Upstate New York, Alzheimer’s
Association, Buffalo, NY - Daniel Geyer • Staff Attorney, Center for Elder Law and Justice, Buffalo, NY
Join Alzheimer’s Association, Western New York Chapter (AAWNY) and Center for Elder Law and Justice (CELJ) as they discuss their innovative partnership to effectively serve caregivers of those living with Alzheimer’s disease and dementia. AAWNY and CELJ will explain their service model, identifying gaps in services, and how adding a novel partner can fill these needs. Also learn how to replicate this model for use across different populations, harmonize collective goals, and improve outcomes for caregivers.
What’s Your Story? Helping Family Caregivers and Stakeholders Develop
Powerful Personal Narratives to Advance Respite Awareness
- Mary Jo Alimena Caruso, M.Ed. • T/TA Coordinator, FRIENDS National Center for
Community-Based Child Abuse Prevention (CBCAP), Baden, PA - Vadonna Williams • Parent Advisory Council, FRIENDS National Center for CBCAP, Northport, AL
- Eileen Graham • Parent Advisory Council, FRIENDS National Center for CBCAP,
McDouough, GA
Storytelling is one of the most valuable resources in our toolbox. Our personal stories, developed and told in our authentic voices, become powerful and persuasive tools for building understanding and action with the audience. This skill-building workshop will provide storytelling tools to elevate respite/caregiver issues in your community. Learn to craft and share a meaningful and credible story, raise respite awareness, and inspire people to act and bring about change. What’s your story?
SHARED SESSION
SESSION 1: Stress Reduction Through a Group Respite Intervention
for Parents of Children with Special Needs
- Christine McGrane, PhD, RN, CNE • Clinical Assistant Professor, College of Nursing, University of Rhode Island, Providence, RI
The challenges and stress of providing care at home can impact both the child’s and family’s environment and quality of life. A 12-week group respite program during the spring of 2023 was provided on a 1:1 ratio by nursing and PT student volunteers. Using a mixed method approach, this study examined the impact of a specific intervention, a group respite program, on caregiver stress among family caregivers (parents) of children with special needs.
SESSION 2: Respite Experiences of Latinx Families
of Children with Special Healthcare Needs
- Kim Whitmore, PhD, RN, CPN • College of Nursing, Marquette University, Milwaukee, WI
This presentation will highlight a study of the respite experience of Latinx families of children with special healthcare needs. The Latinx Respite Survey involved Latinx parents of children with special healthcare needs (CSHCN) completing an anonymous survey that included questions about the CSHCN, their experience with respite care, as well as the Family APGAR, Perceived Stress Scale (PSS-10), and the Global Family Quality of Life Scale. Participants were also invited to schedule an interview to share more about their experience.
Empowering Caregivers Navigating the Future
of Respite through Massachusetts’ 40 Innovation Grants
- Amy Nazaire • Department of Developmental Services – Northeast Region, Hathorne, MA
- Sarah Harrigan, MPA • Senior Consultant, Public Consulting Group, LLC, Providence, RI
This presentation highlights the Massachusetts initiative to fund 40 innovative respite projects that emphasize the experience of caregivers. By capturing the voices of caregivers, conducting data-driven assessments, and fostering collaboration, this initiative seeks to transform the landscape of caregiver support, ensuring better well-being for caregivers and improved services for those in need.
Employers Raising the Bar for Working Caregivers
- Harriet Redman • Co-chair of Engaging Employers Workgroup, Wisconsin Family and Caregiver Support Alliance, Appleton, WI
- Lynn Gall • Manager, Family Caregiver Support and Lifespan Respite Programs, Wisconsin Department of Health Services, Madison, WI
This interactive presentation will briefly present a study of Wisconsin employers and employed caregivers. Then attendees will learn specific strategies some employers are using to raise the bar of benefits and support to attract and retain working caregivers. The Wisconsin Family and Caregiver Support Alliance (WFACSA) Human Resources Care Kit will be introduced to help social service providers, human resource professionals, and others create successful strategies to help engage employers in supporting working caregivers.
Recognizing LGBTQ+ Families of Choice –
When Love Surpasses Blood
- Crystal Collette • Assistant Director for Special Projects, New York State Office for the Aging, Albany, NY
This session will focus on understanding the lived experiences of family caregivers who support older adults from the lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) community and/or identify as LGBTQ+ themselves. Respite providers, professionals and institutions need to collaborate with LGBTQ+ communities to provide meaningful support and ultimately begin to build trust and understanding. This session will aid you in developing a personal action plan to better support and serve the LGBTQ+ community.
Raising the Bar for Respite through Coordination and Partnerships
- Kathy Mayfield-Smith • Associate Director, Institute for Families in Society, COSW,
University of South Carolina, Columbia, SC - Jenny Andrews • Respite and Special Programs Manager, South Carolina Department of Aging, Columbia, SC
- Fedrick Wilson • Executive Director, South Carolina Respite Coalition, Columbia, SC
Central to South Carolina’s efforts to build a Coordinated Lifespan Respite System have been expanding partnerships across the lifespan and coordinating systems and services to “Raise the Bar for Respite” to support family caregivers. Presenters will discuss four major strategies and accomplishments to coordinate respite systems and services that have positioned South Carolina to implement the National Strategy to Support Family Caregivers and address its main goals.
The Sibling Sandwich
- Raquel Rosa • Community Relations Specialist, National Disability Rights Network, Washington, DC
- Seamus Cunningham • Analyst, Disability Rights New York, Albany, NY
The “Sibling Sandwich” describes the unique experience of caregiving responsibilities for both siblings with disabilities and aging parents. Through storytelling and group conversation, this session seeks to support sibling caregivers by building community, prioritizing self-care, and educating policymakers.
PPT Slides
The Chronicles of Building
a Statewide Volunteer Caregiver Respite Consortium
- Elaine Whitford • Executive Director, The Center for Volunteer Caregiving, Cary, NC
- Lisa W . Hoskins, LCSW • Caregiver Support Program Manager, The Center for Volunteer Caregiving, Cary, NC
For the past two years, the State of North Carolina through the Lifespan Respite Grant has been working to create a statewide volunteer caregiver respite consortium to innovate, promote, and increase respite capacity across the state. While we have achieved some successes, there have also been challenges. People who attend will get a “how to” guide to create a consortium in your area. If you have one, we welcome you to be part of the discussion and share your experiences and stories.
Caregiving Youth Need Respite Too!
- Connie Siskowski • President and Founder, American Association of Caregiving Youth
(AACY), Boca Raton, FL
Learn about the growing population of children who are primary or secondary family caregivers, the types of circumstances that demand their participation, and the need for innovation in providing support for child caregivers. Explore solutions for them academically and personally, including their need for a regular break from their responsibilities.
Innovations and Scaling in Respite Services Delivery and Outreach
- Susan Reinhard, PhD • Senior Vice President and Director, AARP Public Policy Institute, Washington, DC
- Brandan Flinn • Senior Policy Advisor, AARP Public Policy Institute, Washington, DC
This session provides an overview of policy and programs that address respite needs and spotlight innovative, locally-driven models that make real differences within communities. We will also discuss ways to scale innovations, leverage outreach, and highlight the role of stakeholders across fields.
SHARED SESSION
SESSION 1: Priority Needs of Texas Family Caregivers:
Findings from a 2023 Mixed-Method Study
- Nandita Chaudhuri, PhD • Research Scientist, Public Policy Research Institute, Texas A&M University, College Station, TX
This presentation from the Public Policy Research Institute at Texas A&M highlights key barriers to respite service use by family caregivers, respite providers, and other respite stakeholders in Texas. Funded by Texas Health and Human Services Commission (HHSC), the 2023 multi-stage needs assessment study findings reflect on critical perspectives of barriers and hindrances from Texas family caregivers of all ages and backgrounds. Lessons inform existing initiatives to motivate utilization of respite services by Texas family caregivers.
PPT Slides
SESSION 2: Wisconsin Provider Needs Assessment
- Kim Whitmore, PhD, RN, CPN • College of Nursing, Marquette University, Milwaukee, WI
The Wisconsin Respite Survey was the first statewide survey to assess the current state of respite, current use, and barriers to receiving and providing respite in Wisconsin. Over 700 primary caregivers, respite providers, care recipients, and agencies completed this survey. Learn more about the survey, conducted as part of the WI Lifespan Respite Care grant, and the results.
Including Diverse Communities in Respite Opportunities –
Lessons Learned from the Field
- Rosalyn Alber • Kinship and Lifespan Program Manager and Respite Program Director, Washington Aging and Long-Term Support Administration, WA
- Dana Allard Webb • Family Caregiver Support Program Manager and Lifespan Respite Grant Manager, Washington Aging and Long-Term Support Administration. WA
- Cheryl Miller, MLS • Director, Children and Family Services, Port Gamble S’Klallam Tribe, WA
The Lifespan Respite Washington Program strives to expand services to diverse populations. We are assisting Tribal populations to create relevant respite programs for their communities, developing materials for family caregivers of future WA Cares beneficiaries and are learning from Kingship Navigators how to better serve Kinship caregivers who are caring for a relative’s children. We will present strategies we are using to engage, educate and empower these family caregivers.
Scholar-Provided In-Home Novel Respite Training (SPRINT): Preparing
Students to Care for Children with Medical Complexity
- Emily Jean Davidson, MD, MPH • Attending Physician, Boston Children’s Hospital, Jamaica Plain, MA
- Erin MacNeil, RN,MSN, NP-C • Marathon Nursing, Braintree, MA
- Sarah Wells MSN, RN, CPN, CWOCN • Nurse Practice Specialist, Boston Children’s Hospital, Boston, MA
Scholar Provided In-Home Novel Respite Training (SPRINT) is a respite innovation grant designed to meet the critical shortage of home nursing care and respite for children with medical complexity. An interdisciplinary team including parent, physician, and nurse will describe the SPRINT model, lead participants through a sample simulation on professionalism for respite providers, discuss preliminary findings and engage participants in an in-depth discussion of respite strategies for children with medical complexity and the use of student-provided in-home respite.
“A Gathering Place” – Building Community and Faith-Based Respite
and Supports for Caregivers in the City of Buffalo
- Daysi Ball • Director, BFNC Hope Center Economic Impact Programs and Senior Support Services, Buffalo Federation of Neighborhood Centers, Buffalo, NY
- Kimberly Leonard • Assistant Long-Term Care Coordinator, Erie County Department of Senior Services, Buffalo, NY
- Aaron Carlson • Executive Director, Hearts and Hands: Faith in Action, Buffalo, NY
Learn about “A Gathering Place,” a collaboration in the City of Buffalo between Erie County Senior Services, community-based organizations and faith-based partners to provide access to respite programs and support services for caregivers predominantly in communities of color. “A Gathering Place” operates in local senior centers and churches adapting use of evidence-based curriculums to educate caregivers to promote their own self-care and positive behavior change for long term sustainability.
Respite ≠ Failure: Changing the Narrative of Respite
- Carolyn Harris • Respite Coordinator, Empower Simcoe, Barrie, Ontario, Canada
- Laurie Straughan • Supports and Services Manager, Empower Simcoe, Barrie, Ontario,
Canada
Raising the bar starts with changing the narrative. This session will look at a person-centered approach where the caregiver of someone with an intellectual disability is identified as the person supported and services are created for them and with them. Learn how we implemented Respitality into our menu of respite services and changed the way we plan respite for all age groups. We will review: caregiver-driven programming; personal outcomes for caregivers; key messages; and transferring this narrative to other respite programs.
Musical Memories Café:
Innovation, Impact, Replication, and Sustainability
- Steven J. Harvey, PhD • Chief Executive Officer, Guided Decisions, Buffalo, NY
- Carolyn Panzica • Executive Director, West Falls Center for the Arts, Musical Memories Café, West Falls, NY
Musical Memories Cafe (MMC) is an innovative program with demonstrated impact that serves caregivers, loved ones with dementia and Alzheimer’s, and isolated older adults through a culturally responsive, shared respite experience. We use evidence-based assessments to provide caregivers with targeted interventions by linking them to community resources. Finally, MMC has an innovative online self-directed training portal that trains organizations to implement MMC, sustain it, train volunteers, and join a community of other MMC organizations.
Piloting Virtual Reality at In-home and Drop-in Respite Programs
- Kelly Allen • Partners In Caring Respite Program Manager, Lifespan of Greater Rochester, Inc., Rochester, NY
- Katy Allen • Division Leader Caregiver Services, Lifespan of Greater Rochester, Inc., Rochester, NY
- Cassidy Macdonald • Education Coordinator, Lifespan of Greater Rochester, Inc.,
Rochester, NY
Innovative digital technologies, specifically virtual reality (VR), are emerging as a solution to improve social support for community-dwelling persons living with memory loss and their care partners. This presentation describes a community-based participatory research project examining the implementation of VR into Lifespan of Greater Rochester’s Partners In Caring (PIC) respite program. Identified barriers and facilitators to implementing the VR intervention will be shared. Findings, tips and lessons learned will be discussed for successful VR implementation.
Raise the Bar for Supporting Family Caregivers
through the Charting the LifeCourse Lens
- Jane St. John • Lead Product Development Specialist, LifeCourse Nexus, Kansas City, MO
- Barbara Sapharas • LifeCourse Nexus Coach, Family Resource Network of Ohio,
Willoughby, OH
This session will “Raise the Bar for Respite” by sharing strategies and tools for supporting family caregivers. These include Charting the LifeCourse Respite Tools and the new Skill Building for Respite Series, including an interactive demonstration of a hands-on learning activity. When professionals receive the training and development to utilize these resources, they are better able to “Raise the Bar” in supporting family caregivers to take short breaks while still acknowledging and honoring their caregiving role.
Mobilizing Family Caregivers as Policy Advocates
- Siena Ruggeri • Community Engagement Consultant, Community Catalyst, Washington, DC
This session will share learnings from Community Catalyst’s past and current work mobilizing state coalitions of family caregiver leaders across the country. By equipping family caregivers with training and technical assistance, family caregivers grew their self-advocacy skills and connected their experiences of caregiving to a broader movement for policy change. The session will feature case studies and strategies for engaging with and mobilizing diverse coalitions of family caregiver leaders.
Care of the Invisible Patient:
The Caregiver Support and Respite Connections Program
- Kathryn Sullivan, LMSW • Social Worker, Palliative Medicine and Supportive Care, Erie County Medical Center, Buffalo, NY
- Kimberly Leonard • Assistant Long-Term Care Coordinator, Erie County Department of Senior Services, Buffalo, NY
The Caregiver Support and Respite Connections Program is an innovative collaboration between an urban safety net hospital and the Erie County Department of Senior Services. This partnership creates a bridge of communication between the hospital and the Area Agency on Aging (AAA) and a continuum of compassion for family caregivers, who care for our aging, vulnerable, and sickest patients. By proactively assessing this often-overlooked need, we are working to reduce the cycle of morbidity while improving our patients’ outcomes.
SHARED SESSION
SESSION 1: RAISE the Bar for Innovative Adventure-Based Memory Camps
- Rachel Watkins-Petersen • Project Manager, Respite Care Association of Wisconsin, Appleton, WI
Memory Camp is an innovative approach to respite and offers individuals with dementia and their families three nights and two full days of fun and relaxation at a beautiful camp in the north woods of Wisconsin. The session will describe planning for the camp sessions, campers’ experiences ages 5-95, recruitment and training of volunteers, campers’ responses, and how to replicate adventure-based camps, like Memory Camp, in your state.
SESSION 2: Dementia Friends New York Champion Information Session
- Dona Giannotti • Community Relations Manager, PSS, New York City, NY
Dementia Friends is a global movement that is changing the way people think, act, and talk about dementia. The goal of the Dementia Friends Session is to help community members understand dementia and the small things they can do to make a difference for people living with dementia. Join Dementia Friends New York as a Champion and help spread Dementia awareness one person at a time! A handbook will be provided to all participants.
From Volunteerism to the Respite Workforce:
An AmeriCorps Seniors Demonstration Program in New York
- Doris Green • Executive Director, New York State Caregiving and Respite Coalition, managed by Lifespan, Rochester, NY
- Sarah Tremblay • Portfolio Manager, Northeast Region, AmeriCorps
- Sharon Cackett • Assistant Director, New York State Caregiving and Respite Coalition, Clinton, NY
Six rural counties in NYS are part of an AmeriCorps Seniors demonstration program aimed at providing respite to caregivers. The project is designed to recruit, train and place 225 volunteers who are 55+. The goal is to then transition 40% of the volunteers into the paid workforce as respite providers through continuing education and job coaching. In this large geographic area, volunteer recruitment, training and respite service delivery methods are tailored to fit local needs.
PPT Slides
SHARED SESSION
SESSION 1: College Students’ Experiences Providing In-Home Respite:
Implications for Training and Support
- Ashley Woodman • Director, Developmental Disabilities and Human Services, University of Massachusetts Amherst, Amherst, MA
- Elodie Carel • Clinical Research Assistant, Center for Autism at Children’s National
Hospital, Rockville, MD
The present study explored the perspectives of college students (n = 189) on their past experiences providing respite care to families of children/adults with intellectual and developmental disabilities. The goal of this study was to identify perceived challenges, successes, and training needs in order to design evidence-based initiatives to recruit and train college students as respite care providers. In this session, we will summarize our findings and lead an interactive discussion around curriculum development.
SESSION 2: Development of a Student Respite Toolkit
- Kim Whitmore, PhD, RN, CPN • College of Nursing, Marquette University, Milwaukee, WI
The Student Respite Toolkit is a free online resource that was developed to increase the number of students who provide respite care to family caregivers. The toolkit provides background on the importance of respite, an overview of existing model student respite programs, ways to connect students to existing respite programs, and step-by-step guidance on how to establish and maintain a student respite program. A Student Respite Collaborative was also established to connect academic partners and program staff involved in student respite programs to share ideas, best practices, and identify potential collaborative opportunities.
Respite Care Among Parents of Autistic Children/Adults:
Findings from a National Survey
- Ashley Woodman • Director, Developmental Disabilities and Human Services, University of Massachusetts Amherst, Amherst, MA
- Tihitina Bekele • Doctoral Student, Developmental Science, University of Massachusetts, Amherst, Amherst, MA
In this session, we will summarize and discuss our findings from a national survey of 539 parents of autistic children and adults. This study aimed to understand to what extent parents of autistic children/adults use respite care services as well as their level of satisfaction with finding and keeping a quality provider. Among those who had never used respite care services, barriers to access were examined.
Introducing the ARCH 2024 Innovative and Exemplary Respite Services
- Casandra Firman, MS • ARCH Evaluation Consultant, ARCH National Respite Network and
Resource Center, Port Townsend, WA - Susan Summers, PhD • ARCH Evaluation Consultant, ARCH National Respite Network and
Resource Center, Seattle, WA - Carolyn Panzica • Executive Director, West Falls Center for the Arts, Musical Memories
Café, West Falls, NY - Jacqueline Raxter • Behavioral Health Program Manager, C.H.A.I. (Caregiving Helping Aid
Initiative), Chaldean Community Foundation (CCF), Sterling Heights, MI - Jeanette O’Hara • Founder, Will’s House, Tulsa, OK
- Molly Brown • Chief Executive Officer, Saint Louis Crisis Nursery, St. Louis, MO
During this session, Casandra Firman and Susan Summers with the ARCH National Respite Network and Resource Center will introduce model respite services recognized by ARCH as Innovative and Exemplary in 2024. All serve different populations and represent unique approaches to providing respite. Presenters will discuss the components of their services that make them exceptional, innovative, sustainable, and worthy of national replication.
Adult Day Services – A National Respite Opportunity
- Doris Karpeh-Diaz • Director, Centro de Amigos, Spanish-language Social Adult Day
Center, Haverstraw, NY - William Zagorski • Board Chair, National Adult Day Services Association, Nashville, TN
The continuum of Adult Day Services continues to expand and serve individuals of all ages and needs and their caregivers. Programs continue to innovate and serve specific and diverse populations as well as become more sophisticated in collecting data and showing the quantitative value of the services provided, to the recipient, the caregiver, and the community at large.
This session offered an exciting overview of the latest research, trends, and promising practices in Adult Day Services. The session also explored working WITH and IN the Latino community with culturally and linguistically competent caregiving skills by featuring an adult day services program that provides services for Latino caregivers.
SHARED SESSION
SESSION 1: Bottoms Up! Ground Floor Approaches
for Local Patient and Caregiver Support
- Phil Di Sorbo, MS, BCPA • Director, Senior Life Transitions Program, Saratoga Senior
Center, Saratoga Springs, NY
Learn some of the core building blocks of a medical/social partnership to bring innovative care to the most vulnerable, using the strengths of your local community, including a source of volunteers that is waiting to be tapped. A thought leader in hospice and palliative care applies the guiding principles of a niche program to a much broader target of adults aged 50+ who have a serious illness - a fast growing demographic in our communities.
SESSION 2: The Touch Program: Supporting Grieving Caregivers
- Jack Read • Respite Voucher Program Manager, Tennessee Respite Coalition, Nashville, TN
When caregivers lose the person they care for, they experience a multitude of emotions: grief, loneliness, guilt, confusion, even relief. Respite care doesn’t end with the passing of a care recipient. The Touch Program provides a day of respite spa services for recently bereaved caregivers who don’t often receive the same amount of comfort they gave to their loved ones; this vital service is innovating how Tennessee supports caregivers once they have stopped being caregivers.
Building Capacity Across the State
to Increase Respite Access for All Caregivers
- Aietah Stephens • Executive Director, Sooner SUCCESS, and Oklahoma Lifespan Respite
Voucher Grant Program, Oklahoma City, OK - Talena Ford • Programs Administrator, Lifespan Respite Voucher Program, Oklahoma
Human Services, Oklahoma City, OK
Building capacity to increase respite access for all caregivers is the foundational approach in the partnership between Oklahoma Aging Services and Sooner SUCCESS under the Lifespan Respite Grant Voucher Program. Coordinated efforts across statewide respite voucher programs will be shared. Intentionality, cultural competency and strategic outreach to increase the number of underserved caregiver populations in Oklahoma is a priority. This successful model to improve care coordination translates to better outcomes and respite access for caregivers.
State Respite Care Policy and Innovations
FACILITATOR: Ella Taggart • Senior Research Analyst, National Academy for State Health
Policy (NASHP), Washington, DC
- Kimberly Hodges • Policy Associate, National Academy for State Health Policy (NASHP),
Washington, DC - Lynn Gall • Manager, Family Caregiver Support and Lifespan Respite Programs, Wisconsin
Department of Health Services, Madison, WI - Deana Prest • Caregiver Support Program Director, NYS Office for the Aging, Albany, NY
This session will feature state policies and innovations to improve access to respite care and to drive toward implementing the respite care actions within the National Strategy to Support Family Caregivers. A national speaker from NASHP will highlight emerging respite care innovations in Medicaid waivers. The session will also feature state policymakers from New York and Wisconsin who administer their Lifespan Respite grants and other caregiver supports, who will discuss innovative caregiver resources, outreach to employers, respite care vouchers, registries, and training curricula.
SHARED SESSION
SESSION 1: Raise the Bar: Make Transportation Part of Your Respite Solution
- Jane Mahoney • Training and Technical Assistance Specialist, National Aging and
Disability Transportation Center - Easterseals, Menomonie, WI
Transportation is something that most caregivers provide for the people they are caring for, yet assistance with transportation is rarely part of the conversation when caregiver support plans are created. This session delves into how community transportation programs can be used as a form of respite and introduces tools to help incorporate transportation into caregiver support plans.
SESSION 2: Expanding Your Toolkit with Volunteer Transportation
- Aaron Carlson • Executive Director, Hearts and Hands: Faith in Action, Buffalo, NY
Volunteer transportation programs can save working caregivers from utilizing personal time off while ensuring their loved ones have access to reliable, safe, and socially engaging transportation. Learn how volunteer transportation is different from public transportation or rideshare programs. Explore the added benefits of volunteer transportation, such as waiting in a doctor’s office with your loved one to ensure they do not get lost or feel anxious, carrying and putting away groceries, and socialization.
PPT Slides
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