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

2. 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

3. 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

4. An inspiration!

5. 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

6. 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

7. Virginia 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.

8. 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.

9. 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: 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

10. Virginia Department for the Aging Strengths for the Coalition
The Conference Room
The 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
system – will accommodate 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

11. 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

12. 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!

13. 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

14. 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…

15. 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!

16. 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

17. “We care because we love.” Donna and Mike

18. 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

19. Research Projects Educate the Coalition and Others Increase Outreach and Collaboration
Abuse of Caregivers by their Loved Ones ( )
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 ( )
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

20. Proposal by a coalition member to hold a workshop
Nursing Home Resident’s Rights Regarding Transfer/Discharge and Readmission from a Hospital ( )
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!

21. 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 program is utilizing the presenters and their program (donation made to coalition)

22. 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

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

24. 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

25. 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 Virginia
Available 24 hours a day, 7 days per week
Search for specific services anywhere in Virginia

26. 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!

27. 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)

28. 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.

29. 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

30. 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

31. 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

32. 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

33. 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

34. Annual Alzheimer’s Conference at MEOC

35. Fairfax County AAA – Caregiver Event 2008

36. 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

37. 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

38. 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 Virginia to have information of importance to kin caregivers available on those sites.

39. Grandparents – Pulaski County, Virginia

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

41. 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.

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

44. 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