Join the Movement to Improve Care for for Seriously Ill Children

Dear Friends of Pediatric Palliative Care in California: 

We are writing to share updates on the work of the recently re-activated Children’s Hospice & Palliative Care Coalition (CHPCC). As many of you know, we have been working since late 2020 to bring together the coalition of stakeholders who are passionate about PPC in our state to work together for advocacy, awareness, and community building. 

We were fortunate to have funding from the Lucile Packard Foundation for Children’s Health (LPFCH) and private donors to start this work. With this support, we carried out three primary coalition-building activities. 

1) Engagement of stakeholders and formation of a Steering Committee and Transitional Task Force: 

A project manager was hired, and stakeholder calls were held in which many of you participated. From there we formed a Transitional Task Force (TTF) that has guided decision making around the best structure for a sustainable coalition. 

We would like to extend our deepest gratitude to Jim Santucci, CPA, and Monica Newitt, BSN, RN, CHPN. Jim and Monica were two of the original steering committee members. They will be stepping down from this position but remain devoted to supporting seriously ill children and their families. 

We also want to thank our Transitional Task Force who met every two weeks and interviewed countless individuals and organizations as we decerned what it will take to create a sustainable coalition in California. 

Thank you to our Transitional Task Force members: 

JoAnne Auger, RN, CHPPN                                            Christina Badasow, RN, BSN

Colleen Cherry, MSCL. CCLS, CT, GCCA-C          Kathy Cleberg, RN, Parent

Joan Fisher, MD, Ph.D.                                                      Mary Ford, RN, CNL, NP, CHPN

Julie Lussier, RN, BSN                                                       Tristian Mitchell, LCSW

Julie Moore, RN                                                                    Salina Patel, RN, BSN

David Sine, MD                                                                     Lisa Schoyer, MFA, Parent

Additionally, we are sad to say goodbye to our project manager Tricia Wiltshire Potts, MAEd. Trisha has been masterful in creating our interactive map of pediatric palliative and hospice services in the state of California AND keeping us all organized. We are grateful that we benefited from her organizational expertise as we started our coalition forming work and wish Trisha all the best in her future exciting work with other lucky non-profits. 

2) Environmental Scan: 

We are grateful for the input and feedback we received from this community in putting together an environmental scan. Thanks to you and the creativity and know-how of Tricia, we were able to create a searchable map- which can be found here: www.chpcc.org/resources. We encourage you to check out the site if you haven’t yet- you can search both by resource type and by county. Please note that the information provided on this map is meant to be educational in nature and does not capture in the entirety the services and organizations providing PPC in the state. Many of you have reached out and said how helpful you’ve found this to be in finding care for children in need. This resource will continue to be a living document and will require updating over time as new services are identified and others are no longer available. 

If you would like to add your organization to the map, correct the information displayed, join the California Hospice and Palliative Care Coalition email list, or desire more information about the coalition please email chpcc2021@gmail.com. 

3) Representation at the National Level: 

We have been active at the national level and have shared the mapping work we have done as a model for other states. All our steering committee members participate in the Statewide PPC Coalitions Network where we share resources and best practices for promoting PPC at the state level. Additionally, two of our steering committee members serve on the National Coalition for Palliative Care, and several members serve in leadership positions within their professional organizations focused on palliative and hospice care. We continue to co-sponsor the Pediatric Webinar Series and more information can be found at http://www.chpcc.org 

4) Identification of a Fiscal structure for the Organization: 

As many of you know, CHPCC has been sponsored by Jacob’s Heart for the last few years. However, due to organizational changes, Jacob’s Heart is no longer able to be our fiscal sponsor. With the help of our Transitional Task Force, the decision was made to partner with the Pediatric Palliative Care Coalition of Pennsylvania (PPC-P) – an organization that shares our values and mission to advocate, increase access, provide education and networking to support our children with serious illness and their families. PPC-P will act as our fiscal sponsor. This arrangement will provide us with the structure that we need as we move toward becoming a sustainable, stand-alone, not-for-profit organization. We are thrilled about this collaboration. We would like to thank PPC-P for their wonderful support and look forward to the future and the potential of working on different projects together. 

We would also like to extend sincere thanks to Jacob’s Heart for their support. 

5) Next Steps: 

As we move forward our next tasks will include identifying funding streams that will allow long-term sustainability, choosing a permanent name, and identifying strategic priorities. We are so fortunate to have an engaged and activated group in California that is ready to tackle these next steps together. We know that many of you are enthusiastic about volunteering your time to continue the momentum we have developed. The Steering Committee will be reaching out again soon as we develop workgroups to continue to move forward as a coalition. 

Together, we will create a state-wide, unified voice to speak out on behalf of those too little or too sick to speak for themselves and provide an up-to-date resource for our families and providers. 

Thank you for all you do! 

Sincerely, The CHPCC Steering Committee 

Kim Bower, MD 

Lori Butterworth, MEd, MA 

Debra Lotstein, MD, MPH 

Sherri Sager, MPA (Advisor) 

Christy Torkildson, PhD, RN, PHN, FPCN