The Virginia Caregiver Coalition ASA/NCOA Conference Aging in America 2009 Las Vegas, Nevada Supporting Sustainable Caregiving Coalitions March 18, 2009

Growth and Sustainability Through Outreach, Collaboration and Education From the initial 22 founding members in 2004 to the current 85 members in 2009 From an informal group to an organized coalition with a governing body From educating our coalition members about caregiving issues to educating other professionals and family caregivers

Virginia – 2004 The Need to Support Caregivers 55% women Average age 43 years old 62% married or living with partner 77% employed 793 million hours of unpaid care 84% of caregivers are taking care of family members Most common recipient is caregiver’s mother 15% of caregivers helping a friend or neighbor $7.868 million

An inspiration!

From Crystal: “Caring for my Grandmother Carrie and Aunt Henrene is the most rewarding, and at the same time, the most stressful thing that I have ever encountered in my life.” “Caregiving is stressful. It is such a big responsibility and at times I feel like I’m in over my head.” “I feel like I should be doing so much more. There is always something that needs to be done – as if it is never enough.” Photography: Adult Care Center of Central Virginia Elizabeth Sumpter, Photographer

Virginia 2004 The First Collaboration The Action The Virginia Department for the Aging is selected to receive training from the Caregiver Coalition Research Project sponsored by the AARP Foundation and the Administration on Aging. On March 17 and 18, 2004, a group of 22 individuals representing public, private and non- profit entities gathers in Richmond, Virginia and receives training from Brian Duke and Helen Eltzeroth to establish a statewide caregiver coalition. Purpose of the training was to facilitate the formation of caregiver coalitions at the state and local levels. Training program developed from researching the best practices of other caregiver and human service coalitions. Two states trained in the first year of the grant. Virginia second state trained in second year of the grant. 21 participants for first day of training and 20 for the second day. Prior to training, participants completed a pre-training questionnaire where they were asked to share their views on the need for a coalition. Views summarized on flip charts and available for reference during the training. 12 keys identified as crucial to building and sustaining caregiver coalitions: Planning, vision statement, mission statement, goals and objectives, commitment and focus, structure and communications, leadership, decision making, recruiting, fundraising, project/activities, evaluations and sustainability

Virginia 2004 The Plan The Vision – All Virginia caregivers will be valued, respected, and supported and will have easy access to information, education and services. The Mission – The Virginia Caregiver Coalition (VCC) will passionately work to improve the experience of caregiving through education, advocacy and access to resources.

Initial Challenges The Virginia Department for the Aging will facilitate the Virginia Caregiver Coalition but there is no funding for the group. The program administrator for the Coalition has multiple responsibilities. VCC members live in different locations throughout the state, have their own work responsibilities, and express varying views on issues affecting caregivers.

State Unit on Aging under the Administration on Aging VDA’s Role in Virginia State Unit on Aging under the Administration on Aging Coordinate Aging Services in Virginia – Area Agencies on Aging and Other Contractors Outreach, Advocacy and Education for Virginia’s citizens The Virginia Department for the Aging is a stand-alone department of 27 employees under the Secretary of Health and Human Resources – a member of the Governor’s cabinet. Evolved from: 1958 General Assembly created Commission on Aging 1970 Division of State Planning and Community Affairs name state unit on aging under the Older Americans Act 1974 General Assembly created an independent Office on Aging 4/09/82 General Assembly created Virginia Department for the Aging 25 Area Agencies on Aging – funding from Older Americans Act, state General Fund, local governments, private grants, voluntary contributions and fees (cost-sharing) Each prepares area plan – basis for contract with VDA 14 private nonprofit 5 joint exercise of powers 5 local government agencies 1 community services board

Virginia Department for the Aging Strengths for the Coalition The Conference Room The Email System Other Councils and Commissions: Commonwealth Council on Aging Virginia Alzheimer’s Disease and Related Disorders Commission Virginia Public Guardian and Conservator Advisory Board Co-worker involvement Agency has a conference room to accommodate 30 with phone and video conference capability Email system – will accommodate email groups Virginia Commonwealth Council on Aging – 11 members appointed by governor, 4 appointed by Speaker of the House, 4 appointed by Senate Committee on Privileges and Elections Develop strategic plan and issue annual report Alzheimer’s Disease and Related Disorders Commission 10 appointed by Governor, 3 appointed by speaker of the House, 2 appointed by Senate Committee on Rules Plans for meeting caregiver and patient needs – annual report and website Public Guardianship and Conservator Advisory Board All 15 members appointed by governor and 12 represent specific constituencies Co- workers support through technical support and attendance

The Members of the Coalition Strength for the coalition: “multi-taskers” know many people! “The Jugglers” Discuss initial and current membership of the coalition Discuss duties of facilitator

The Unwritten Plan of Action Keep the vision and mission of the Virginia Caregiver Coalition as the basis for its activities Be flexible and adaptable in conducting activities and projects Use resources that are available to further the coalition’s activities If “opportunity knocks” at the coalition’s door – answer!

First action: Unify the Virginia Caregiver Coalition Share individual members’ activities Relate stories about caregivers Recognize your members Increase membership – or not Educate caregivers and collaborate with others through a project One of the pluses of a diverse coalition is that one area can learn from the projects of another – we always have a share or announcement time. We have gotten so big now that I take the announcements ahead of time and print out a list so we don’t devote too much meeting time on that aspect Sharing the trials and tribulations of caregivers creates a common bond Coalition has moved on because now everyone realizes that we all have certain Gave away certificates to the founding members, have different members take the lead in programs and projects Had mini celebration after revising caregiver guide Will have mini 5 year celebration

Possible New Coalition Members Area Agencies on Aging Faith-based groups Non-profit agencies of all types Adult day care Medical professionals State agencies Prepared extensive list for consideration but…

First Outreach Focus - local and regional coalitions: Caregivers Community Network at James Madison University Aging Together – formed from a Robert Woods Johnson Grant at Rappahannock/Rapidan CSB/Area Agency on Aging Peninsula Agency on Aging Result - increased VCC membership, educational program opportunities and collaborations Concentrating on these groups increased the membership substanially!

Project: Taking Care – A Resource Guide for Caregivers VCC members unified behind a common goal VDA supported developing the Resource Guide The Resource Guide can be used as an outreach and educational tool for professional and family caregivers as well as government officials Completed by the end of the VCC’s first year

“We care because we love.” Donna and Mike

The Second Year: Renewal and Advancement of Outreach, Collaboration and Education Efforts The VCC celebrated its first successful project The outreach trifold is created The coalition begins to educate itself as to resources important for caregivers and their clients

Research Projects Educate the Coalition and Others Increase Outreach and Collaboration Abuse of Caregivers by their Loved Ones (2005-2006) VCU social work intern suggested project Committee of three compiled data Group agreed it was difficult topic to put in understandable terms for the general public AAA Self-Assessment Survey of the National Family Caregiver Support System (2005-2006) VCU social work intern at VDA conducted study Results presented to the Coalition, Area Agencies on Aging and to intern’s academic class Ted Susac…social work intern…still a member of the Coalition Abuse of Caregiver Identify resources – very few Research and evaluate sources Form partnerships AAA Self Assessment Survey Julia OChieng

Proposal by a coalition member to hold a workshop Nursing Home Resident’s Rights Regarding Transfer/Discharge and Readmission from a Hospital (2006-2007) Proposal by a coalition member to hold a workshop Members of the coalition representing Virginia Poverty Law Center and the Virginia Ombudsman program were eager to address the issue A faith-based group agreed to lend us their conference room Really successful project that went public!

Publicity – fliers sent to coalition members’ associates Coalition members furnished continental breakfast A large group of attendees from different areas of the state(32) VDA’s 2025 program is utilizing the presenters and their program (donation made to coalition)

Technology: Advances Outreach, Collaboration and Education SeniorNavigator.org – a founding member of the VCC Community and technology come together Award-winning program of health and aging resources - both public and private – available to seniors, their families and caregivers via the internet

Virginia 2-1-1 Connects people to free information on available community services

No Wrong Door A Work in Progress Goals of the No Wrong Door Initiative: One-stop for adult and human services Area Agencies on Aging designated as lead resource centers by the Virginia General Assembly Information on long-term care support and public benefit programs

Virginia’s Easy Access www.easyaccess.virginia.gov Information for Virginia’s elderly and disabled adults and the providers that support them A public private partnership with the Commonwealth of Virginia, SeniorNavigator, and 2-1-1 Virginia Available 24 hours a day, 7 days per week Search for specific services anywhere in Virginia

Videoconferencing Started with collaboration between VDA and Mountain Empire Older Citizens, Inc. Facilitated by the Virginia Department of Health Rapidly expanded attendance at Virginia Caregiver Coalition meeting and increased membership Formal organization developed “Pay attention to that man behind the curtain!” And his cohort at VDA!

Increase in Meeting Attendance Remote Location Attendees Sampling of Growth April 7, 2006 – MEOC videoconferences with VDA for the Virginia Caregiver Coalition meeting March 29, 2007 – four remote sites (fourteen additional participants) March 20, 2008 – six remote sites January 13, 2009 – eight remote sites (25 additional participants)

Government Outreach and Education Advocacy Training Formal training from a former member of the Virginia General Assembly Training at various conferences including telephone and web State Governor’s Proclamations Caregiver Picture Exhibition Distribution of Caregiver Resource Guide National Convey information on caregiving legislation and issues to coalition members Meeting at congressman’s office in Washington, D.C.

Relationship with the National Alliance for Caregiving Recognized in 2007 and 2008 by the National Alliance for Caregiving (NAC) Attendance at conferences in Chicago and Washington, D.C. Participation in telephone conferences 2007 grant from NAC enabled the Coalition to hold a number of activities to recognize caregivers in November 2007 and to raise awareness of family caregiver issues at the 2008 Virginia General Assembly Session

Caregiver Training 2007 The Roadmap to Success Training from NAC - Chicago meeting and a series of telephone conferences Direct outreach to caregivers – coalition members and AAAs invited guests for the training Publicity efforts – collaboration with PBS PBS radio program manager spoke to the VCC VDA’s Commissioner was interviewed Free publicity after coalition volunteers manned the phones for the station’s fundraising efforts

Caregivers educated at 8 video conference sites Coalition members “passed the hat” to contribute to the local PBS station Caregivers educated at 8 video conference sites Caregivers at different sites shared their stories Presentations: Different Ways to Deal with Caregiver Stress Family Dynamics and Involving the Whole Family in Caregiving Caregivers of Persons with Hearing and Vision Loss Respite for Caregivers: Resources and Aids Evaluations

Training supplemented by a caregiver picture exhibition at the 2008 Virginia Assembly Session Taking Care – distributed to members of the Virginia General Assembly and the Executive Branch of Virginia government with a letter citing the contributions of Virginia’s caregivers

Building On Past Accomplishments 2008 Attended NAC meeting in Washington, D.C. Continued bi-monthly caregiver coalition meetings Shared Virginia Caregiver Coalition experiences on national telephone conference Recognized Family Caregivers Month

Annual Alzheimer’s Conference at MEOC

Fairfax County AAA – Caregiver Event 2008

Future Plans The Savvy Caregiver Training Purchased the program Partner with local Alzheimer’s Association to conduct training Revise the Caregiver Resource Guide Committee of three coalition members established to revise the manual

Centers for Medicare and Medicaid Services Coalition members will work with contact at CMS to hold conference on issues affecting employed caregivers Future wishes: Recruit members of other caregiver populations Work with Veteran’s Administration Strengthen the Kinship Care Initiative Statewide Task Force

Kinship Care Initiative The Department for the Aging continues its support of the Kinship Care Initiative Statewide Task Force and Information Network established in 2000 with a seed grant from the Brookdale Foundation. An informative guide, Grandparents Caring for Grandchildren: A Resource Guide, published by the Department, serves as a resource for kin caregivers and professionals alike. The Department is working with its website director, SeniorNavigator, and 2-1-1 Virginia to have information of importance to kin caregivers available on those sites.

Grandparents – Pulaski County, Virginia

Summation Outreach, Collaboration and Education Be flexible Utilize your resources Organize meetings and trainings Share the leadership roles Have fun!

And always remember… Why you are doing this! Robert has attended the Adult Care Center for 18 years. He had a stroke in 1983 and his mother died in 1988.

At the Virginia Department for the Aging, we want all our seniors to age gracefully and comfortably as they ride into their sunset years!

Ellen M. Nau, M.A. Human Services Program Coordinator National Family Caregiver Support Program Title III B and III E In-Home Services Adult Day Care Virginia Respite Care Grant Virginia Respite Care Initiative Care Coordination for Elderly Virginians Kinship Care Money Follows the Person Program Elderly Refugee Program Virginia Department for the Aging 804-662-9340 Ellen.Nau@vda.virginia.gov