State Lifespan Respite Summits
Highlights of Past Summits
States host Lifespan Respite Summits to build or strengthen state respite coalitions and partnerships, identify gaps in services and strategies to overcome barriers, engage new collaborators in Lifespan Respite systems, work on sustainability or strategic planning, and to renew commitments to a statewide coordinated system of respite care services for all family caregivers. States that are interested in applying for a federal Lifespan Respite Care Program grant may also hold a State Lifespan Respite Summit to help plan for writing the grant proposal and engage partners.
2021 Sustainability Summit Objectives
- Identify state-level policy and program needs related to respite care services for children, adults, and an aging population to increase advocacy capacity.
- Strengthen state and community partnerships for advocacy efforts for caregivers across the lifespan.
- Develop strategies to build advocacy capacity in the NYS Caregiving and Respite Coalition.
Part I, Video Recording
Part II, Video Recording
On July 27-29, the AR Department of Human services, the state Lifespan Respite grantee, and the AR Lifespan Respite Coalition hosted a virtual Lifespan Respite Summit. Governor Asa Hutchinson provided opening remarks, and Sarah Schmidt, the lead for the state's Lifespan Respite grant, provided a presentation on Understanding "What is Respite?". See the program agenda that also includes an extensive list of resources, and an infographic on the state's Lifespan Respite program.
On July 28-29, the Respite Care Association of Wisconsin hosted the 2021 Wisconsin Respite Summit at Sentry World, Stevens Point, WI. Projects developed over the last year through their Federal Lifespan Respite Enhancement Grant, as well as programs that RCAW provides through its lifespan respite state funding, were presented. RCAW used the opportunity to hear from stakeholders in the respite community about current respite issues throughout the state.
Summit goals. Participants will:
- Learn about the activities supported by the Wisconsin Lifespan Respite Grant to improve access to respite to underserved populations
- Learn about respite related activities from partners across Wisconsin
- Identify opportunities for collaboration to enhance the lifespan respite system in Wisconsin
- Provide feedback on current respite issues in Wisconsin
- Inform the development of a comprehensive survey to assess the current state of respite in Wisconsin
View the Agenda and Presentation Slides
The summit was held at the State Capitol Building in Bismarck, ND. About 85 people participated from across the state. The event was hosted by the ND Lifespan Respite Coalition and the ND DHS Aging Services Division. The goals for the event were to:
- Identify current respite services available in North Dakota
- Identify strengths and barriers to respite usage
- Discuss sustainability of Lifespan respite activities in North Dakota
A panel of state agency representatives from the ND Aging Services Division, the Medical Services Division and the Developmental Disabilities Division presented "The Baseline: Current Respite Services in ND" with the following objectives to describe:
- Respite services currently available under state and federal funding sources and how people can apply for these services
- Other respite services available to families outside of federal and state funded services
- Potential barriers to consumers being able to access the services or other policy limitations or gaps that deter use.
A panel of caregivers also shared their personal caregiving stories.
Resources
The summit was held at the Hearst Media Center in Albany, New York. About 130 people attended the day-long event that was hosted by the NY State Caregiving and Respite Coalition (NYSCRC) and the NY State Office for the Aging (NYSOFA). The objectives for the event were to:
- Identify state-level policy and program needs and goals related to respite care services for children, adults, and aging population.
- Strengthen state and community partnerships to sustain Lifespan Respite activities.
- Develop strategies to maximize use of existing respite resources.
Doris Green from NYSCRC shared recent accomplishments of the coalition in her PPT presentation. Deana Prest and Jessica Perk with NYSOFA provided an overview of the state's Lifespan Respite grant activities, including their model partnership with NY Connects, the state's No Wrong Door approach. A panel of individuals representing multiple state agencies, including representatives from the Dept. of Health, Office of Mental Health, Dept. of Veterans Affairs, the Office of Persons with Developmental Disabilities, the State Office for the Aging, and the Office of Children and Family Services, discussed the respite options available in the state. An inspiring panel of family caregivers shared their personal stories about the importance of respite. AARP released their report, the Future of Family Caregiving in NY. At the conclusion of the Summit, NYSCRC described their plan to establish Advisory Board subcommittees to expand their pool of Lifespan Respite stakeholders and recruited volunteers from summit participants.
Additional Handouts to inform the process:
NY Lifespan Respite Grant Activities 2014-2017
NY Lifespan Respite Grant Activities 2017-2020
Survey of Informal Caregivers in NY City, 2017
Resources from Region 1 Office for Persons with Developmental Disabilities:
Reimagining, Reorienting, and Revolutionizing a Respite Strategy
The summit was held at the Nashville Public Library. About 80 people attended the day-long event that was hosted by the TN Respite Coalition (TRC) and the TN Commission on Aging and Disability in collaboration with the TN Department of Mental Health & Substance Abuse Services and the TN Council on Developmental Disabilities. The goals for the event were:
- Learning about what respite is available in Tennessee and where there are gaps,
- Networking with family caregivers, professionals, state and national representatives, and
- Planning the next steps for respite in local communities.
The purpose of the Summit was to strengthen state and community partnerships to sustain Lifespan Respite activities; develop strategies to maximize use of existing respite resources and identify and leverage new respite funds; engage in sustainability planning; and generate innovative activities for future development.
Jennifer Abernathy of he TRC presented the results of the “Let’s Talk About Respite” conversations held across the state in 2017 and Tabitha Satterfield with the TN Commission on Aging and Disability provided an update on the state's Lifespan Respite grant activities. A Local Initiatives Panel of community-based organizations from across the state highlighted their locally inspired innovative respite services.
About 35 people from state organizations, government agencies and local respite, aging and disability services attended the Summit in Madison, WI, hosted by the Respite Care Association of Wisconsin.
Summit Objectives:
- Identify state-level policy and program needs and goals related to respite care services for children, adults, and aging population.
- Strengthen state and community partnerships to sustain Lifespan Respite activities.
- Develop strategies to maximize use of existing respite resources.
A panel of state advocates provided family perspectives on respite needs; Dr. Kim Whitmore, with the University of Wisconsin School of Nursing presented on the importance of research in establishing an evidence base for future respite services; and several state agency representatives shared what is currently available in the state for respite. Lisa Pugh, State Director of The Arc of WI and Co-chair of the newly formed WI Family and Caregiver Support Alliance, shared the Alliance's goals for respite and other caregiver supports in the state.
With the Liberating Structures approach, Washington's 2018 Lifespan Respite Summit attendees were able to participate on a completely new level and the result was new ideas for fundraising, sustainability, and partnerships.
The summit was held at the College of Southern Idaho in Twin Falls with about 70 participants. The Idaho Lifespan Respite Summit was hosted by the Idaho Commission on Aging, the Idaho Caregiver Alliance and their partners, the Boise State University Center for the Study of Aging, the Living Independent Network Corporation, which is Idaho’s Council on Independent Living, the Office on Aging at the College of Southern Idaho, and AARP Idaho with support from D.L. Evans Bank, St. Luke’s Magic Valley, and Regence (BC/BS). The Summit had three main objectives:
- Objective 1: Acknowledge and raise awareness about the importance of respite to caregiving families.
- Objective 2: Raise awareness about how caregivers and the Lifespan Respite program have helped with the progress of the ICA (a coalition of partners) to bring the needs of caregivers across the lifespan to light, in particular the need for enhancing respite; Present and obtain input on the Caregiver Action Plan and answer the question of what next?
- Objective 3: Develop local strategies to maximize use of existing respite resources and leverage new resources, including funds and innovative ideas for future development.
A panel of caregivers representing diverse caregiving experiences opened the event. Pam Catt-Oliason with the ID Commission on Aging and state Lifespan Respite grant manager provided an overview to help summit participants engage in discussion about gaps, strengths, and opportunities for caregiver respite and support in Idaho.
Florida Lifespan Respite Summit, June 15, 2017
The summit, held at St. Paul United Methodist Church in East Largo, FL, was hosted by the Florida Lifespan Respite Alliance (FLRA), the FL Department of Elder Affairs and their partners, including the Ounce of Prevention Fund of Florida, the Florida Association of Area Agencies on Aging, the Florida Department of Children and Families, the Agency for Persons with Disabilities (APD), the Florida Developmental Disabilities Council, Inc., AARP of Tampa Bay and the American Association of Caregiving Youth. Forty-five people were in attendance, including Victoria Wright, Lifespan Respite Project Officer, ACL, who provided introductory remarks.
The goals of the summit were to expand the statewide voice of FLRA by establishing Regional Hubs to collect their input; to identify respite service gaps by region, age, and disability; and to initiate a process of statewide collaboration that will eventually lead to a more coordinated system of respite care.
New Mexico does not currently have a Lifespan Respite grant. The event was hosted in Santa Fe, NM, by charter members of a NM Respite Coalition, led by the NM Direct Caregivers Coalition, and the New Mexico Department of Health, Office of Community Health Workers, with support from AARP New Mexico and United Healthcare. About 40 people attended. The purpose of the summit was to build a statewide respite coalition and to prepare to submit a first-time time application for Lifespan Respite Program federal funding. The goals of the summit were to: 1) Convene, strengthen and diversify a statewide coalition to learn about respite care, and to support the many ways respite can be delivered; and 2) Build awareness of how a lifespan respite collaborative can support development of a New Mexico Lifespan Respite program that serves the array of New Mexico respite needs.
The Lifespan Respite Summit in Jackson, Mississippi was convened by the newly formed MS Family Caregiver Coalition. Coalition members who helped plan the event were from the MS Alzheimer’s Association, MS AARP, MS Caregiver Task Force, Community Links, and the MS National Multiple Sclerosis Society. Over 100 individuals participated in the event. The purpose of the summit was to build a statewide respite coalition and to prepare to submit a first-time time application for Lifespan Respite Program federal funding.
The goals of this Summit were to:
1. Identify the needs of family caregivers for respite in Mississippi.
2. Identify current respite services that are available in Mississippi.
3. Identify barriers that prevent family caregivers from accessing respite services in Mississippi.
4. Gather information necessary to provide family caregivers access to a seamless array of respite services.
The summit was held in the Lewiston/Clarkston area of northern Idaho. Over 80 individuals from northern ID were in attendance. The Summit, Caregiving in Idaho, was hosted by the Idaho Caregiver Alliance and its partners to focus on synergies, strategies and solutions around caregiver respite and support across the lifespan.
A panel of caregivers representing diverse caregiving experiences opened the event. Pam Catt-Oliason with the ID Commission on Aging and state Lifespan Respite grant manager provided an overview of respite in ID and shared an update on coalition activities to embed respite and caregiver supports into several major statewide health care initiatives. See PPT Presentation. Participants were then given an opportunity to discuss the future of caregiver respite and supports in Idaho.
The North Carolina Lifespan Respite Project in collaboration with the North Carolina Respite Care Coalition hosted the summit in Raleigh, NC on June 18, 2015. Nearly sixty human service professionals and family caregivers gathered at the Wake County Commons Building in Raleigh, North Carolina to share information and ideas towards the goal of “creating a unified and achievable vision for improving family access to quality Lifespan Respite services in North Carolina.”
The Summit offered participants the opportunity to:
- Recognize the importance of respite services to families across the lifespan.
- Describe the Lifespan initiatives underway at the state and national level.
- Apply new information to the findings of the NC Lifespan Respite Strategic Planning Survey and develop preliminary strategies towards achieving an optimal Lifespan Respite system in North Carolina.
- Discuss next steps for further development and implementation of strategies.
Presentation Highlights
- Alicia Blater, M.S., APR, Lifespan Respite Project Director, NC Division of Aging and Adult Services and Linda Kendall Fields, M.Ed., Lifespan Respite Project Specialist, NC Division of Aging and Adult Services provided an overview of NC's Lifespan Respite grant activities and findings of the NC Lifespan Respite Strategic Planning Survey. PPT Presentation
- Cindy Miles, President, NC Respite Care Coalition, presented an overview of the coalition and ways that participants could get involved with the coalition. PPT Presentation
The summit was held in Dover, DE on May 27, 2015 under the sponsorship of Easter Seals, The DE Lifespan Respite Network, and the Division of Services for Aging and Adults with Physical Disabilities. Lisa Bond, Deputy Director, of DSAAPD presented an overview of respite and caregiving in the state.
The goals for the Summit were to:
1. Have legislators, state agencies, and other stakeholders understand the need for respite care funding for caregivers.
2. Educate employers about the growing number of working caregivers, and how we can support both employee and employer.
3. Develop alternative ways to provide respite outside the voucher system we currently use, e.g. co-ops, volunteer training, respite sharing.
4. Discuss ways to sustain the respite voucher system.
A summary of DE Lifespan Respite grant activities accomplished to date as well as a summary chart of respite funding resourcesin the state were shared with participants. Small breakout discussion groups responded to these questions: Session 1 and Session 2.
Agenda
The event was held in Columbia, South Carolina on June 18, 2014 under the joint sponsorship of the SC Lifespan Respite Program, the SC Respite Coalition, ARCH and other state partners. The welcome was presented by Tony Kester, Director, SC Lieutenant Governor’s Office on Aging. Over 100 individuals, including family caregivers and SC Respite Coalition partners attended. Discussion focused on implementation of the SC State Respite Plan and the future of developing a statewide respite system.
The Montana Lifespan Respite Summit hosted by the MT Lifespan Respite Coalition was held in Helena, MT in conjunction with the Governor's Conference on Aging. After a keynote on Lifespan Respite and a panel presentation of family caregivers in the general session, summit participants retreated to hear an overview of the new Montana Respite voucher program presented by Vicki Clear, DEAP, and an overview of MT Lifespan Respite activities by Kerrie Reidelbach, MT Aging Services and Lifespan Respite grant manager, including information on MT's funding sources for respite. Participants then proceeded with round table discussions to answer questions to help advance and inform the state's sustainability work.
The event was held in San Marcos, TX on June 12, 2014 under the joint sponsorship of the TX Lifespan Respite Program and the Texas Respite Coalition, which partners with the Texas Department of Aging and Disability Services (DADS) for the Lifespan Respite Care Program. The Coalition supports DADS in its goal to enhance and expand the coordination and availability of respite services in Texas. The purpose of the summit was to bring together members of the statewide coalition and to engage other interested parties, including family caregivers, from across the state to address Building the Foundation of a Strategic Plan for Respite in Texas. Several presenters provided an overview of respite services for various populations, including:
- Deputy Commissioner Chris Taylor, Texas Health and Human Services Commission.
- Manda Hall, MD, Title V Children and Youth with Special Health Care Needs Director, Assistant Medical Director, Purchased Health Services Unit, TX Dept of State Health Services
- Christina Wells, Executive Director, Alzheimer's Association, Capital of Texas Chapter
A table of state resources for respite in Texas was also was also presented at the Summit.
Agenda
The Nevada Lifespan Respite Summit held on Friday, June 29, 2012, across three sites simultaneously in Elko, Las Vegas, and Reno, using video conferencing. It was successful in bringing stakeholders together, sharing information, and providing a networking opportunity for participants, despite encountering some technical difficulties with videoconferencing between the three sites. Otherwise, Nevada had an incredibly successful, highly prepared and well organized summit. A high level of commitment, engagement and energy emerged at the end of the day among participants (as illustrated by the large number of individuals who stepped forward to assume leadership positions in various workgroups.) In total, 102 attendees participated in the Summit, attending one of the three sites in Elko, Las Vegas, or Reno.
Presentation Highlights
Cheyenne Pasquale, the Aging and Disability Resource Center (ADRC) Project Manager discussed Nevada’s Care Connection, the state’s ADRC, and its role in the State Lifespan Respite Program and in serving family caregivers. Nevada’s ADRC serves all ages including children. PPT presentation
Cheryl Dinnell, the Nevada Lifespan Respite Care Program Coordinator, shared preliminary data results from Nevada's Lifespan Respite Balancing Initiative. PPT presentation: What We Know About Caregivers in Nevada.
Jane Gruner, Deputy Administrator, Nevada Mental Health & Developmental Services described her agency’s provision of respite funding through the Regional Centers in a self-directed program. PPT presentation
Summary Report