The document summarizes discussions and presentations from a meeting of the California Community Care Coordination Collaborative. In the morning, various county projects provided updates on their care coordination efforts and challenges. This included projects in San Joaquin, San Mateo, Ventura, and Orange Counties. Participants then discussed using kidsdata.org and other county projects. The afternoon included a training from Family Voices of California on family advocacy and leadership. A parent also shared their perspective on the advocacy training.

1. Welcome to the
California Community
Care Coordination
Collaborative
June 2, 2015

2. • Introductions and Welcome
• Icebreaker
• Project Updates
– San Joaquin County – SJC 5Cs Project
– San Mateo County – SMC Care Coordination Learning Community
• Project Leadership Family Advocacy Training
– Family Voices of California – Allison Gray and Pip Marks
– A Parent’s Perspective – Michele Byrnes
• Lunch
MORNING AGENDA

3. • Project Updates
– Ventura County – VC-Pact
– Orange County – OCC3 for Kids
• Using kidsdata.org
• Project Updates
– Alameda County – CCS Mental Health Initiative
– Contra Costa County – 7 Cs
• Discussion of System Issues
• Meeting Evaluation and Wrap-Up
AFTERNOON AGENDA

4. • Women’s Bathroom Code: 421
• Men’s Bathroom Code: 543
• Wireless Password: Being passed around
LOGISTICS

5. ICEBREAKER
• Your name
• Your organization and position
• What’s your favorite thing to do during the summer?

6. San Joaquin County 5Cs Project
Ann Ciremele
Executive Director
Family Resource Network

7. 1. Planning and Development Committee meeting monthly.
2. Collaborative meeting monthly.
a. Alternating agency presentations and case sharing each month.
3. MOU deliverable completed by 5/30 date.
4. First Fact Sheet almost completed, due 6/30.
5. Adopting a local version of San Mateo’s Map of Agencies to
our deliverables to share information on agency eligibility
and services.
PROJECT PROGRESS

8. • Agency presentation talking points include “Where’s the
front door?” and “What is a major myth or
misunderstanding about your organization?” which are
providing great info.
• CCS shared wonderful CHDP resources that were not
known by all 5Cs agencies.
• Health Plan of San Joaquin is actively participating in this
collaborative, facilitating the link between early
intervention and the county’s primary managed health
care program.
ACCOMPLISHMENTS

9. • Appealing to more agencies to participate in monthly
meetings.
• Finding a “virus free” way to share documents.
• Determining the role of 5Cs San Joaquin County within
other collaborative structures that exist in the county.
CHALLENGES

10. • Has a collaborative or agency used the 2-1-1 iCarol
system to store and manage health care specialist
information for agencies and families?
• Are other collaboratives having difficulty finding
providers for out-of-county transportation to hospitals or
medical centers, especially for children receiving Medi-
Cal i.e. are the fixed reimbursement rates affecting
vendors’ willingness to travel out of county?
DISCUSSION QUESTIONS

11. San Mateo County Care Coordination
Learning Community
Cheryl Oku
Program Manager
Community Gatepath

12. • Professional Development Workgroup organizing a
training event for medical professionals on screening/
assessment, referrals and care coordination planned for
August in collaboration with Stanford Children’s Health:
Lucile Packard Children’s Hospital Developmental
Behavioral Pediatrics and Watch Me Grow
• Incorporating the San Mateo 5Cs Learning Community
into the First 5 San Mateo Integrated Systems for
Children with Special Needs and their Families (Watch
Me Grow) to provide focus and sustainability
PROJECT PROGRESS

13. • Care coordination focus in Watch Me Grow: First 5 San
Mateo Integrated Systems of Care for Children With
Special Needs and their Families (2015-2018)
• New 0.5 FTE care coordinator position in one primary
care pediatric clinic and continuation in 3 additional
clinics
• Training event for medical professionals on screening/
assessment, referrals and care coordination planned for
August.
ACCOMPLISHMENTS

14. • Staff and partners’ availability and capacity
• Maintaining focus and continuity in a shifting landscape
of local funding and services
CHALLENGES

15. • How has your coalition used local data to improve care
coordination systems?
• What might we do in order to encourage and maintain
family participation in our collaborative?
• How has your coalition addressed identified systems gaps
and barriers and elevated the discussion to promote
systems change and advocate for local, regional or
statewide changes?
DISCUSSION QUESTIONS

16. Project Leadership Family Advocacy Training
Allison Gray
Pip Marks
Family Voices of California

18. Never doubt that a
small group of
thoughtful, committed
citizens can change
the world. Indeed, it
is the only thing that
ever has.
- Margaret Mead
Public Policy Advocacy: A Grassroots Guide, The Statewide Parent Advocacy
Network, span@spannj.org

19. The voice of families
The vision of quality health care
The future for children and youth
with special health care needs

20. To increase the ability of families to
advocate for the needs of children
and youth with special health care
needs, and to encourage more
families to take on leadership
roles.
PROJECT LEADERSHIP

21. Chapter 1: Knowing the Past to Change the Future: History and
Purpose of Advocacy
Chapter 2: Rules of the Road: Systems, Laws, and Entitlements
Chapter 3: Becoming a Mover and Shaker: Working with
Decision-Makers for Change
Chapter 4: Playing Well with Others: Enhancing Communication
Chapter 5: Telling Your Story: Developing and Presenting Stories
to Others
Chapter 6: Ways You Can Serve: Participating on Decision
Making Bodies
Chapter 7: Solidifying Partnerships: Connecting with Local
Change Makers
TABLE OF CONTENTS

22. RECRUITMENT
 Target Population:
Caregivers of children with special health
care needs, disabilities, or mental health /
behavioral health issues
 Outreach:
Wide variety of agencies, organizations, and
hospitals (e.g., Family Resource Centers,
support groups, local California Children’s
Services, and specialty care clinics)

23. RETENTION
 Incentives
• Food
• Childcare
• Stipends
 Participation Agreement
 Certificate of Completion

24. SCHEDULING
 Seven 4-hour sessions
 Accommodating families
 Meeting days / times
 Flexibility to make up missed session

25. STRUCTURE & STAFFING
 FVCA Council Member Agencies
 Project Director
 Statewide Leadership Liaison
 Host Site Trainer / Mentor
 Host Site Support Staff

26. FACILITATION
 Preparing local trainer / mentor
 Facilitating dynamic / interactive sessions
 Development of Action Plan
 Completion of homework

27. MENTORING & SUPPORT
 Individual Mentoring
 Monthly Group Mentoring
 Online Advocacy Community
 Support from local Family Resource
Center Staff

28. MENTORING CONT’D – DATABASES
 Family Databases (Project Graduates)
• Areas of expertise / experiences
• Advocacy Interests
• Advocacy Activities
 Opportunity Database
• Local
• Regional
• State

29. RESULTS – YEARS 1 AND 2
 10 graduates – San Diego County
 20 graduates – San Francisco
 49 graduates – Alameda County

30. RESULTS – CONT’D
Graduates are:
Serving on health care- / disability-related
groups or decision-making bodies
Meeting with local and state policymakers
Providing public testimony
Telling their stories to the media

31. PROJECT LEADERSHIP GRADUATES –
EXAMPLES OF PARTICIPATION:
 Alameda County Committee on Children with Special Needs
 CCS Alameda County Family Centered Care Committee
 Title V CCS Needs Assessment
 CCS Redesign Technical Work Groups
 Children’s Hospital Oakland Family Advisory Council
 Children’s Regional Integrated Service System
 San Diego Head Start Policy Committee
 Help Me Grow (Alameda and San Francisco)
 Kaiser Patient & Family Centered Care Advisory Council
 SF City & County Fatherhood Initiative Workgroup
 San Francisco Mental Health Board
 SELPA Community Advisory Committee (various counties)
 Support for Families Board
 Center for Youth Wellness Advisory Council
 UC Berkeley MCH CSHCN Conference – Parent Panel
 FVCA Health Summit & Legislative Day / Health Summit Advisory
Committee

32. EXTERNAL EVALUATION
 Participants’ confidence in their ability to advocate,
their leadership skills, and their experiences with
advocacy showed significant improvement.
 Participants showed significant, positive changes
on measures of empowerment for accessing services
for children.
 Participants felt better prepared to continue to
advocate for their children and for systems change.

33. LESSONS LEARNED
 Curriculum Revision (e.g., more attention to
cultural differences / learning styles of group,
more about history / structure of CA health care
system)
 Flexible scheduling, childcare, and stipends
 Long-term mentoring and facilitated peer support
 Variety of means for communication, mentoring,
and support
 Educating others about importance of family
participation

34. YEAR 3 – EXPANSION OF TRAININGS
Train the Trainers Workshop
 Two-day training in SF:
Curriculum content, best practices for
recruitment and implementation, budget
estimates, information on approaching local
foundations / funders, Action Plan
 Request for Applications:
To be publicized through Family Resource
Center Network of CA (FRCNCA), $500
stipend offered to offset costs of attending

35. YEAR 3 – EXPANSION OF TRAININGS
 Implementation Guidelines:
• Best practices and lessons learned related to
recruitment, retention, scheduling, staffing, etc.
 Menu of Technical Assistance Options:
• Online group for / scheduled conference calls
with Trainer / Mentors facilitated by State Liaison
• Problem solving with State Liaison via phone or
email
• Site visit and in-person consultation with State
Liaison

36. YEAR 3 – ALUMNI MENTORING
 Statewide Online Advocacy Community
 Statewide monthly conference calls or
webinars
 Statewide annual in-person meeting

37. YEAR 3 – UPDATES
 Database maintenance
 Curriculum updates
 Curriculum translation

38. ALUMNI TESTIMONIES
 Project Leadership helped build my confidence to advocate for my child and
other children with health care needs. It also gave me the strength and
confidence to continue pushing to get services and make sure programs
continue happening for children.
 I really believe this experience is life-changing for the unexpected role I’ve
found myself in of a mother of a special needs daughter. …I am proud to be
a Project Leadership alum and am excited to see what we all do with our
empowered voices.
 Project Leadership Training has allowed me to further build my confidence
as an advocate. I have progressively taken on the role as an advocate for
her special health care needs but always felt ‘stuck’ when it came to further
advancing. This training has given me the tools, information, and necessary
leadership skills to further my advocacy voice for my daughter and other
families.
 I feel so empowered and inspired to take my advocacy work to the next
level. Project Leadership graciously provided me with the tools and
strategies to tailor my story to a specific issue and how to be an effective
communicator using a balance of emotion and objectivity.

39. THANK YOU!
Allison Gray 415-282-7494 ext 136 agray@familyvoicesofca.org

40. A Parent’s Perspective on the Project
Leadership Family Advocacy Training
Michele Byrnes
Alameda County

41. • Professional background in policy and advocacy, but not
based on personal experience
• Classes provided strong basis of knowledge on how to
translate personal advocacy to systems advocacy
• Created strong, diverse community of parents
• Ongoing mentorship and support essential for continued
advocacy
BENEFITS OF PROJECT LEADERSHIP

42. Thanks to preparation and mentoring offered through
Project Leadership:
• Understood steps necessary to join a family board; joined
Family Advisory Council at UCSF Benioff Children’s Hospital
Oakland; participated as Family Partner in Kaizen Weeks
• Invited to present a web seminar on pediatric feeding tubes;
co-presented with Dr. William Berquist, Gastroenterologist at
Lucile Packard Children’s Hospital
• Participated on Family Voices of California Health Summit
Advisory Committee; collaborated with FVCA to create and
present a web seminar to prepare parent advocates for
Advocacy Day
ACCOMPLISHMENTS

43. • Invited to provide testimony at the Senate Committee on
Health Informational Hearing: Making Health Care
Affordable: The Impact on Consumers
• Presented at UC Berkeley MCH Roundtable: The
Changing Landscape for CYSHCN
• Presented to Gastroenterology team at California Pacific
Medical Center about therapeutic benefits of SOS feeding
therapy for children with G-tubes
ACCOMPLISHMENTS

44. THANK YOU

45. • Orzo pasta with spinach, feta cheese, kalamata olives, red
onion and toasted pine nuts in balsamic vinaigrette
• Fresh mixed greens topped with crumbled blue cheese,
dried cranberries, spiced nuts and balsamic vinaigrette
• Mediterranean platter of hummus, dolmas, tabbouleh, feta
cheese, olives and pita
• Grilled squash (vegan), shrimp, and chicken skewers
• Beverages and cookies
LUNCH

46. Ventura County
(VC-Pact)
Myra Medina, DPT
Supervising Therapist, Conejo Medical Therapy Unit
California Children’s Services, Ventura County

47. • Initial Trend Report submitted, revised version to be
submitted with additional data on coalition members’
perceived gaps
• Acuity Tool with operational definitions developed and
piloted
• Coalition Case Admission Review Panel selected
• First case presented
PROJECT PROGRESS

48. • Accomplishment 1:
Monthly meeting established successfully
 4th Tuesday of every month; 15 to 25 participants
• Accomplishment 2
Excellent involvement of coalition members
 Bring new agencies to the table and spread the word
in the community
• Accomplishment 3
Excitement in the community regarding the project
and acknowledged as valuable
ACCOMPLISHMENTS

49. • Challenge 1
Maintaining coalition members regular participation
Number of members is significant but not all are
present at all meetings
• Challenge 2
Time to work on the project while actively involved in
other job duties
• Challenge 3
Maintaining uniqueness of this coalition in comparison
to other existing ones
CHALLENGES

50. • Are any of the existing coalitions using by-laws?
• How do other coalitions involve members to promote
participation at every meeting (at least one agency
representative)?
• Has anyone secured funding (outside of LPFCH) and
what are some of the strategies to secure funding?
DISCUSSION QUESTIONS

51. Orange County Care Coordination
Collaborative for Kids
(OCC3 For Kids)
Rebecca Hernandez, MSEd
Program Manager
Help Me Grow Orange County

52. OCC3 for Kids progress to date on strengthening
communication & collaboration among agencies providing
services to CSHCN and implementation of system-level care
coordination:
• System Level Care Coordinator engaged as part of Public
Health Nursing (PHN) and OCC3 for Kids
• Leadership team expanded to include PHN Program Manager
and System Level Care Coordinator
• Federal Financial Participation as funding source continues to
move forward with commitment from CHOC and PHN
• Two subcommittees (Communication & Best Practices) are
established and meeting regularly
PROJECT PROGRESS

53. • Evaluation Plan that includes inputs, activities, outputs and
outcomes has been completed and submitted to LPFCH
• Acuity Tool finalized with plan to launch at CA Children's
Services, Public Health Nursing and CHOC Children’s NICU
discharge clinic
• Decision Tree finalized for the implementation of a process
to improve dialogue and coordination among agencies when
a specific need for a higher level of care coordination is
identified
ACCOMPLISHMENTS

54. • The use of the term “delay of care” was found to be a
problem if we expected the health care providers and
health plans to utilize the acuity tool
• Although we have verbal commitment
from health plans, they have not regularly
participated in OCC3 for Kids
• It is uncertain if the subcommittee
structure is effective since it is a challenge
for people to commit to additional meetings
CHALLENGES

55. • How are others addressing system level issues and
barriers once they are identified at the county level?
• Have we identified any common issues among
the 5Cs participants that can be addressed
at the state level?
• What strategies do others have to engage and
encourage & retain participation
by health plans?
DISCUSSION QUESTIONS

56. Alameda County CCS/Behavioral Health
Services Integrated Care Coordination Project
Katie Schlageter, MS-HCA
Administrator, California Children’s Services
Deputy Division Director, Family Health Services
Alameda County Public Health Department

57. • Alameda County CCS Mental Health Initiative has
convened a large Steering Committee.
• Formed a Planning Committee to assist CCS staff with
Steering Committee meeting and project planning.
• Have begun conducting key stakeholder interviews to
build relationships and gain insight into mental health
service system issues.
PROJECT PROGRESS

58. 1. Developed and categorized Service System Issues List.
2. Created draft Vision and Values Statements.
3. Created draft Needs Assessment.
ACCOMPLISHMENTS

59. 1. Engaging and keeping key stakeholders engaged.
2. Significant time commitment for core group.
3. Mental Health Service System is complex. State CCS
policies related to mental health are outdated.
CHALLENGES

60. 1. How are other projects keeping
busy stakeholders engaged?
2. What types of data are others
collecting?
3. Based on others’ experience is
the CCS Mental Health Initiative
“on track” in terms of progress
and timeframe?
DISCUSSION QUESTIONS

61. Contra Costa California Community Care
Coordination Collaborative (7 Cs)
Hannah Michaelsen and Vi Ibarra
CARE Parent Network
Contra Costa County

62. • Completed Family Experience Outline: This details how
families of kids with special health care needs will share
their experience with 7 Cs partners in order to move our
system to a family experience focus.
• Added new school district partner: Mt Diablo Unified,
one of our county’s largest districts. Two enthusiastic
program specialists have been attending our monthly
meetings.
PROJECT PROGRESS

63. • Completed draft of a brochure that discusses the
importance of our Roundtable meetings that can be shared
with agency staff and providers.
• Continue to have consistent participation at monthly 7 Cs
partner meetings.
• Role of Children’s Service Systems Coordinator: She is
beginning to collect data about Roundtable meetings,
promote Roundtable meetings, and share information
across participants at 7 Cs and Roundtable.
ACCOMPLISHMENTS

64. • Sustainability of the project. Grant funding for Children’s
Service Systems Coordinator runs out at year end. Also
looking for sustainability funding for 7 Cs beyond June
2016. Recently formed a small workgroup to work on
identifying funding.
• Consistent participation in Central/East County
Roundtable. Waiting for some personnel changes in one
agency. Only one partner consistently brings cases to
discuss.
CHALLENGES

65. • How do we sustain our project efforts? What are other
counties doing both with personnel and funding?
• Have other counties experienced a “roadblock”
personality in their collaborative, and if so, what was their
response?
• How can we increase participation of reluctant
Roundtable/coalition members?
DISCUSSION QUESTIONS

66. COLLABORATIVE CHECKLIST

67. • Summer Site Visits – San Mateo, Ventura
• Webinar – September 1, 2015
• Fall Site Visits – Contra Costa, Orange
• Check-in Calls – October and November 2015
• In-Person Meeting – December 1, 2015
UPCOMING ACTIVITIES

68. • Please complete your meeting evaluation and leave it on
the corner table.
MEETING EVALUATION

69. Thank you for attending and sharing your
thoughts and experiences!