Children's Hospice & Palliative Care Coalition of California

The June Newsletter has been published!
Click the following to read the newsletter.
https://chpcc.org/chpcc-current-newsletter

There are also several educational events coming up in California
https://chpcc.org/education-events
and a reboot for the Northern California Collaborative for Pediatric Palliative Care for December 5! Please save the Date!
More information at:
https://chpcc.org/time-sensitive-events

Let us know if you have news to share!

The National Hospice and Palliative Care Organization Pediatric Palliative and Hospice Needs Assessment has been extended through July. We are asking any providers/programs/organizations that have taken care of at least one child in the last 4 years to complete the survey. All providers, both hospital and community-based, are asked to complete the survey. The survey will take 30-60 minutes, dependent on the size of your program.

Please click on the following link to access the survey:
https://nhpco1.az1.qualtrics.com/jfe/form/SV_6zXcLhlClGnc54W

THANK YOU FOR ALL YOU DO!

2024 Pediatric Needs Assessment The 2024 Pediatric Palliative and Hospice Care Needs Assessment is a product of the National Hospice and Palliative Care Organization’s (NHPCO) Pediatric Advisory Council. The goal of the needs assessment is to gain a better understanding of the organizations and providers caring for pediatric pat...

Do you have any webinars/conferences coming up? Any news to share for our pediatric palliative or hospice stakeholders? The Summer CHPCC Newsletter will be distributed in early June. Send us your information to share to [email protected].

The 75th issue of NHPCO's Pediatric e-Journal is out now! 🆕
Each issue is typically organized around a focal theme. In this anniversary issue, however, the Pediatric e-Journal Workgroup brought together an eclectic group of articles that illustrate many aspects of the breadth and depth of how pediatric hospice and palliative care have grown over the years.
Download the latest version of the e-Journal and check out archived issues here: https://www.nhpco.org/palliativecare/pediatrics/chipps-pediatric-e-journal/

Has your organization cared for at least one pediatric patient in the last four years? If so, the Pediatric Advisory Council also invites you to complete the 2024 Pediatric Palliative and Hospice Care Needs Assessment: https://nhpco1.az1.qualtrics.com/jfe/form/SV_6zXcLhlClGnc54W
This assessment will allow the council to better understand the organizations and providers caring for pediatric patients with serious illnesses throughout the country to create resources and support advocacy.

If your organization has cared for at least one pediatric patient in the last four years, complete the 2024 Pediatric Palliative and Hospice Care Needs Assessment!

The Needs Assessment is a product of NHPCO's Pediatric Advisory Council. Council members are gathering data to gain a better understanding of the organizations and providers caring for pediatric patients with serious illnesses throughout the country. This understanding will inform future resource creation and support advocacy efforts.

Take the survey here or scan the QR code below: https://nhpco1.az1.qualtrics.com/jfe/form/SV_6zXcLhlClGnc54W. Be sure to share this post with your network to help us reach as many provider organizations as possible!

If your organization has cared for at least one pediatric patient in the last four years, complete the 2024 Pediatric Palliative and Hospice Care Needs Assessment!

The Needs Assessment is a product of NHPCO's Pediatric Advisory Council. Council members are gathering data to gain a better understanding of the organizations and providers caring for pediatric patients with serious illnesses throughout the country. This understanding will inform future resource creation and support advocacy efforts.

Take the survey here or scan the QR code below: https://nhpco1.az1.qualtrics.com/jfe/form/SV_6zXcLhlClGnc54W

Be sure to share this post with your network to help us reach as many provider organizations as possible!

The survey will take approximately 15 - 30 minutes to complete. There is a PDF available to gather your answers before completing the Qualtrics survey.

Please email [email protected] is you have any questions!

To kick off an exciting month full of pediatric content, the National Hospice and Palliative Care Organization has kicked off the 2024 Pediatric Palliative and Hospice Care Needs Assessment! The survey is open to any organization that has cared for at least one pediatric patient during the last four years. The goal of the Needs Assessment is to gain a better understanding of the organizations and providers caring for pediatric patients with serious illnesses throughout the United States. The needs assessment will help create resources and support advocacy. You do not need to be an NHPCO member to complete the survey, so please feel free to share it with peers. (Don't forget to fill it out for your organization!)
Please copy and paste the following URL to reach the needs assessment:
https://nhpco1.az1.qualtrics.com/jfe/form/SV_6zXcLhlClGnc54

THANK YOU!

nhpco1.az1.qualtrics.com

Check out the 75th edition of the wonderful NHPCO Hospice and Palliative Care Organization Pediatric E-journal! We are so proud of the work the e-Journal workgroup has accomplished, and we are so thankful for all our contributors and the unfailing support of the National Hospice and Palliative Care Organization (NHPCO) since our start in 1995! Our e-Journal is open-access and can be found at https://www.nhpco.org/pediatrics

😊
Contributors include:
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Pediatric Palliative and Hospice Care
nhpco.org • 1 min read

Pediatric Palliative and Hospice Care Pediatric palliative and hospice care focuses on enhancing quality of life for the child and family, preventing and minimizing suffering, optimizing function, and providing opportunities for personal and spiritual growth.

Please visit https://coalitionccc.org for more information!

Registration is open for the annual Health Summit! Join us for two days of advocacy, education, and connection. Learn more and register today at https://bit.ly/2024FVCAsummit

From our friends at Family Voices of California

Join us for the
Family Voices of California
ONLINE Health Summit
Please share with your friends, family, and social media networks!

Register Here

Registrarse aquí



Learn Together. Support our children’s health care needs together.
Each year, Family Voices of California (FVCA) hosts a statewide Health Summit to bring together families, youth, providers, policymakers, advocates, state agencies, insurers, and other stakeholders to identify and address the health challenges that affect one of California’s most vulnerable populations:
Children and Youth with Special Health Care Needs.









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The newest issue of the Pediatric e-Journal is now published! the 74th issue is focused on Rare and Complex Conditions. As most of NHPCO’s pediatric resources, the e-Journal is open access. You can access the journal at this following link, sign-up to subscribe, and access past issues.

Pediatric e-Journal The Pediatric e-Journal, originally named ChiPPS E-Newsletter, has been continuously published.

Sign up to join the 2024 Summit!

We are so excited to announce that the California Assembly Bill 847 has Passed!

This bill, also known as the “Sophia’s Act,” was approved by the legislature in October 2023!

This legislation intends to increase the age at which individuals who have been deemed eligible for pediatric palliative care and hospice services prior to the age of 21 would be eligible to continue services. The bill's provisions that modify the eligibility of individuals for these services would constitute the establishment of a state-mandated local program. In order for these provisions to be implemented, the measure would require the acquisition of essential federal approvals and would ensure that federal financial participation remains uncompromised. There is work to be done to implement the new legislation and more information will be provided as we learn more.

Please click the link to learn more

California AB847 | 2023-2024 | Regular Session Summary (2023-10-13) Medi-Cal: pediatric palliative care services. [Chaptered by Secretary of State - Chapter 814, Statutes of 2023.]

Palliative-Aware Anticipatory Guidance - NeuroJourney.org

DATE/TIME: Tuesday, February 20, 2024 – 12:00 pm PT

This month's installment of the 2024 Pediatric Palliative Care Webinar Series explores the online tool NeuroJourney.org, an educational resource for families and clinicians caring for children and youth with Severe Neurological Impairment. Intended as a roadmap for caregivers, the site blends guidance on the medical and psychosocial aspects of the disease trajectory with family-centered commentary.

SPEAKERS: Julie Hauer, MD & Jennifer Siedman, M.Ed

NEXT MONTH:
• Register now for the next event in the 2024 Pediatric Palliative Care Webinar Series on Thursday, March 21, 2024: Navigating Facts and Values: Palliative Care in the Face of Significant Distress - Speaker: Ian D. Wolfe, PhD, MA, RN, HEC-C

CLICK HERE TO REGISTER:
https://www.ppcwebinars.org/

PPC Webinars As the number of children with chronic, complex and life-limiting illness continues to increase, the training needs of physicians and healthcare teams has increased as well. Many adult providers, family practitioners and smaller hospice teams have identified training as the leading barrier to their....

FROM the American Academy of Pediatrics: These are the 40 strategies outlined in the Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs (CYSHCN). The strategies are categorized by the 4 critical areas of focus: health equity, family & child well-being and quality of life, access to services, and financing of services.

Overall Vision: Children and youth with special health care needs enjoy a full life, from childhood through adulthood, and thrive in a system that supports their social, health, and emotional needs, ensuring dignity, autonomy, independence and active participation in their communities.

Blueprint for Change Strategies: At-a-Glance Overview View details on the 40 strategies outlined in the Blueprint for Change: A National Framework for a System of Services for CYSHCN.

A coalition is as strong as the community that holds it up. Together, we can do more than we can do alone. Let's bring our abilities and passions together to effect real change.
https://chpcc.org/donate