Parent Engagement through the Project Leadership Program

Elaine LinnFamily Engagement Manager

January 18, 2018

The voice of families

The vision of quality health care

The future for children and youth with special health care needs (CYSHCN)

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OUR MISSION• Build the capacity of parent centers • Provide information and a forum for

parent centers and families to advocate for improved public and private policies

• Build partnerships between professionals and families

• Serve as a vital resource on health care

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Goal: Increase the number of family members of CYSHCN who

are prepared and supported to become advocates for health care policy and service improvements.

PROJECT LEADERSHIP

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Children with special health care needs in California do not receive care that meets federal minimum quality standards

Have a hard time obtaining community based services, such as finding doctors and scheduling appointments

46th California state ranking on care coordination

40%

Children with Special Health Care Needs (CSHCN): A Profile of Key Issues in California, Child and Adolescent Health Measurement Initiative, Lucile Packard Foundation for Children’s Health, January 2013 accessed 4.14.15 at http://cshcn.wpengine.netdnacdn.com/wp-content/uploads/2013/01/Christy-report_01-22-13.pdf

CA RANKS LAST When it comes to families’

shared decision-making with health care providers

HALF Do not receive effective

care coordination

THE NEED

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Project LeadershipKey Components

Pre-Training- Training-of-Trainers - Best Practices for:

Recruitment & RetentionMentoring & SupportAdministration, ReportingBudgeting & Funding

Facilitation of Training Series

1. History & Purpose of Advocacy

2. Systems, Laws, andEntitlements

3. Working with Decision makers

4. Enhancing Communication

5. Telling Your Story

6. Participating on Decision makingBodies

7. Connecting with Local ChangeMakers

Post-Training- Mentoring & Support

- Continuing Education

- OngoingCommunications

- Technical Assistance

- Identify Opportunities &Match Participants

- Administration &Reporting

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Phase I(2013-2014)

•Pilot year•Full funding for all costs of training

•Identify opportunities & match participants•Independent evaluation

Phase II(2014-2015)

•Continuation of Phase I

•Full funding for all costs of training continued

Phase III(2015-2016)

•Expansion of trainings

•Spanish Translation of Curriculum

•Implementation of Training-of-Trainers Workshops

•Funds restricted to statewide coordination; local sites responsible for acquiring funds for training implementation

Phase IV (2016-2018)

•Continuation of Phase III

•Expansion of Family Engagement

•Issue monitoring and information

•Continuing education

•Independent evaluation

•Added emphasis on tracking graduates advocacy, leadership activities

OVERVIEW OF PROJECT IMPLEMENTATION

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RESULTSØ TRAININGS IN (66 Trainers):

Alameda, Contra Costa, Los Angeles, Merced, Monterey, Napa, Orange, Sacramento, San Bernardino, San Diego, San Francisco, San Mateo, Santa Barbara, Santa Clara, Santa Cruz, and Tuolumne

Ø 167 GRADUATES IN: Alameda, Contra Costa, Los Angeles, Merced, Monterey, Napa, Orange, Placer, Sacramento, San Bernardino, San Diego, San Francisco, San Mateo, Santa Barbara, Santa Clara, Santa Cruz, Tuolumne, and Yolo Counties. Montana, Oregon, and Hawaii.

HEALTH SUMMIT ANDHEALTH SUMMIT AND LEGISLATIVE DAY

FEB 26 & 27• Bring together families, providers, legislators,

government staff, advocates, health insurers• Address pressing issues facing CYSHCN• Meet with legislators to discuss policy issues and

exchange information

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IMPACTING PUBLIC POLICY

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TestimonyMedia

Meetings with lawmakers

11Evaluation Report: Project Leadership, Leslie S. Linton, Terry Conway, Christine Edwards, Health Policy Consulting Group, May 2014

INDEPENDENT EVALUATION

SERVING ON HEALTH CARE- / DISABILITY-RELATED GROUPS OR DECISION-MAKING BODIES

Ø Alameda County Committee on Children with Special NeedsØ California Children’s Services (CCS) Redesign Advisory Group and Technical

Work GroupsØ CCS Alameda County Family Centered Care CommitteeØ Center for Youth Wellness Advisory CouncilØ Children’s Hospital Oakland Family Advisory CouncilØ Children’s Regional Integrated Service SystemØ FVCA Health Summit & Legislative Day / Health Summit Advisory

CommitteeØ Help Me Grow (Alameda and San Francisco)Ø Kaiser Patient & Family Centered Care Advisory CouncilØ Medi-Cal Children’s Health Advisory PanelØ San Diego Head Start Policy CommitteeØ San Francisco City & County Fatherhood Initiative WorkgroupØ San Francisco Mental Health BoardØ School district Community Advisory Committees (various districts)Ø SELPA Community Advisory Committee (various counties)Ø Support for Families BoardØ Title V CCS Needs AssessmentØ UC Berkeley MCH CSHCN Conference – Parent Panel

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ENGAGING PARENTS, PROFESSIONALS IN YOURLOCAL COMMUNITY

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ATTEND•Attend Family

Voices of California Health Summit (Feb 26-27)

INITIATE•Sponsor a

trainer(s) and host local trainings

ENHANCE•Integrate

modules, skills, and tools into ongoing programs

STEP UP•Join a local

training program; sponsor and support participants

THANK YOU!

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Elaine Linn www.familyvoicesofca.org

FVCA Family Engagement Manager @familyvoicesca

916-799-6538 @familyvoicesca

elinn@familyvoicesofca.org familyvoicesca

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