PROJECT LEADERSHIP 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. Facilitator Notes: NOTE: Family Voices of California (FVCA) grants permission for the printing and implementation of FVCA Project Leadership curriculum as long as FVCA is given credit. This curriculum is intended for use as a seven-session training series, or chapters can be used for individual training workshops. Please refer to the Manual Introduction pages for general information about the training. If you are using individual chapters, please present Chapter 0 prior to beginning the chapter session. Start here if these are families who are going through the series of 7 trainings.   Welcome. My name is ___________. I am the Leadership trainer and mentor for _______________ (agency name). Project Leadership is a seven session series of trainings that was created for parents of CSHCN. This training was developed to increase the ability of families to: advocate for children with special health care needs/disabilities assume leadership roles in the community

“Our vision is that all children in the communities we serve are able to reach their maximum health potential.” Facilitator Notes: Read the vision statement of LPFCH on the slide. Support for Project Leadership is provided by the Lucile Packard Foundation for Children’s Health. Read through the information below from the foundation website and / or go over the LPFCH brochures and materials provided in the participant binder if you requested them from the foundation in advance. The Lucile Packard Foundation for Children’s Health is a public charity, founded in 1997. The Foundation works in alignment with Lucile Packard Children’s Hospital and the child health programs of Stanford University. Mission The mission of the Lucile Packard Foundation for Children's Health is to elevate the priority of children's health, and increase the quality and accessibility of children's health care through leadership and direct investment. The Foundation works in alignment with Lucile Packard Children’s Hospital and the child health programs of Stanford University School of Medicine.   [Continued on next page…]

The vision of quality health care The voice of families The vision of quality health care The future for children and youth with special health care needs Facilitator Notes: Read FVCA vision statement on the slide. Family Voices of California (FVCA) developed this Leadership Training that you’re about to take part in. Let me tell you a little about Family Voices and why this Leadership Training was developed. FVCA is a statewide collaborative of locally-based parent run centers working to ensure quality health care for children and youth with special health care needs. FVCA builds the capacity of parent centers throughout California to provide families with the information and support they need to make informed decisions about the health care of their children. FVCA provides information and a forum for parent centers and families to advocate for improved public and private policies, builds partnerships between professionals and families, and serves as a vital resource on health care. [http://familyvoicesofca.org/node/2] In 2004, FVCA received funding from the Marguerite Casey Foundation to develop a Leadership Training that would help prepare families to effectively advocate for their children with special health care needs (CSHCN) by educating policymakers and legislators about their children. Since then, the curriculum or individual chapters have been presented at the annual state Family Resources and Supports Institute conference. In 2009, it was adapted and delivered to FVCA’s Kids as Self Advocates youth group, and the “Telling Your Story” chapter has been used by FVCA member agencies to prepare parents to participate in FVCA’s annual Health Summit and Legislative Day in Sacramento. In 2013 FVCA was awarded a grant from the Lucile Packard Foundation for Children’s Health to implement this pilot training series. The grant was renewed for a second year of trainings in 2014.

Your Agency’s Information / Mission statement here. Your agency’s logo here. Your Agency’s Information / Mission statement here. Enter information about your agency here.

Project Leadership Graduates Introductions Trainer / Mentor FVCA / [Agency] Staff Project Leadership Graduates Parents / Caregivers Facilitator Notes: Trainer/Mentor As the trainer/mentor, I am responsible for coordinating and conducting all aspects of the training in (insert name of region). It is also part of my job to identify health-related committees and task forces in (insert name of region) and help you become involved in leadership opportunities. I will be developing reports and articles about project activities in the region and maintain regular communication with the Statewide Leadership Liaison. Once the training is over, I will continue to act as your mentor as you pursue leadership opportunities in the area. [In addition to the description of your role above, talk about your past training experience and your professional/personal background related to CYSHCN.] [If any other members of the Host Agency involved with Project Leadership are present at the first training session, they should also introduce themselves to the group at this time.] [continued on next page…]

Why Are You Here? You are families of children and youth with special health care needs. You have great leadership potential. You are interested in improving systems. Facilitator Notes: Slide: Why Are You Here? You are a parent, family member, caregiver, volunteer, or mentor of a child or children with special health care needs. You have great leadership potential. (Past graduates have joined committees and boards, provided testimony at state hearings, visited / written legislators, etc.) You are interested in improving the systems for children with special health care needs. Use the data points below to illustrate why systems change is necessary and why their involvement as parents is necessary. Some data points that highlight the impact on families and CSHCN: 1.4 million CSHCN in California California ranks last on a minimum quality of care index (assesses insurance, provision of preventive care, minimal criteria for medical home) California has highest percentage nationwide of CSHCN whose parents experience stress due to parenting: almost 30% of California CSHCN have families who have had to cut back or stop working children of color represent about half of CSHCN in California [From: Children with Special Health Care Needs: A Profile of Key Issues in CA, LPFCH, November 2010] [CONTINUED ON NEXT PAGE]

Why Do Parents Make Good Leaders? Families have authentic experiences to share. As consumers, families are in an ideal position to honestly evaluate services. Families are problem solvers. Facilitator Notes: In order to have the most effective care for children with special health care needs, parents and other family members need to be involved in planning, delivering, and evaluating services for children. Slide: Why Do Parents Make Good Leaders? Read bullets one at a time and then ask the group what they think the bullet points mean and why each point is important. Example: Families are in an ideal position to honestly evaluate services because they know what works and what doesn’t. Example: Families are problem solvers because they are always adapting and finding solutions among services and programs that are sometimes limited. HANDOUT 0.1: Why Do We Develop Parent and Youth Leaders?

General Orientation Forms Facility Food Training Binder Other Questions Trainer Notes: Forms: Participation Pledge: Collect the Participation Pledge and give copies to those who were unable to print and bring in. Go over the Pledge to confirm understanding of the commitment. Distribute Participant Agreement forms. Walk the participants through the form and allow time to complete and sign. Facility: Explain any logistics regarding the facility (e.g., entrance and exit procedures, emergency evacuation, location of bathrooms, etc.) Training Binder: Distribute (if hasn’t been done already) and walk participants through the binder. Point out the schedule and contact information at the beginning of the binder. Remind them they are welcome to attend either day, but should contact you in advance. Explain that they will receive pages for chapter 2 at session 2, for chapter 3 at session 3, etc. Food: Explain the plan regarding food provisions for each session. Other: Address any other logistics related to local training site. Questions: Address any questions participants have.