Lighting the way for children with medical complexity
DONATE
The LEARN initiative is specific to the pediatric palliative and hospice care community in Pennsylvania with the participation of healthcare providers, medical professionals, therapists, clergy, caregivers and parents.
Legislation Education Advocacy Research Networking
To be a part of the LEARN Initiative, contact PPCC Executive Director, Betsy Hawley.
Current LEARN Areas of Emphasis:
New! Resource Matching Program - PPCC is excited to announce the launch of the Resource Matching Program, a new pilot initiative made possible by the generous support of the Edith L .Trees Charitable Trust. The program will connect families of children with both complex medical conditions (CMC) and intellectual and developmental disabilities (IDD) to reliable resources, easing the burden of navigating these challenges alone. Check out the information below.
Pennsylvania Environmental Scan - The goal of this scan is to create a centralized place for Pennsylvania caregivers and providers to look for pediatric palliative and hospice care and related services (such as family foundations and resources for families) in the form of a GIS (Geographic Information System) map available online.
Click HERE to participate by taking the survey.
Grief Resources - For a list of PPCC's grief resources and a comprehensive list of Pennsylvania resources, click here.
PA Family Care Act - Allows family members to provide critical care and rehab services to elderly loved ones at home, without risking their jobs and financial security.
PA POLST Act - Senate Bill 631 provides a legal basis for POLST forms to be used by medical professionals across all health care settings for seriously ill patients who voluntarily wish to specify the treatment they desire to receive.
PA POLST Education - Free continuing education course designed for Physicians, Physician Assistants, Nurse Practitioners, Nurses and other healthcare professionals who are involved with end-of-life care. Regular virtual LEARN events serve to advance the mission of PPCC with these activities. PPCC welcomes those interested in pediatric palliative and hospice care in Pennsylvania.
Parents and caregivers of children with complex medical conditions (CMC) and intellectual and developmental disabilities (IDD) often struggle to find resources to address a wide range of challenges. These children require advanced care, leaving caregivers with little time or energy to seek support, while also managing other family responsibilities.
In response, PPCC is excited to announce the launch of the Resource Matching Program,
made possible by the Edith L. Trees Charitable Trust.
This pilot program will connect families with reliable resources, aiming to reduce the burdens on caregivers. The PPCC team is already networking with organizations, gathering resources, interviewing caregivers, and distributing surveys to collect additional data. A volunteer program is also being developed to support the program’s growth and connect with caregivers once it’s launched. We need the support of our community. If you're interested in joining this exciting project, check out upcoming opportunities. For any inquiries, contact krista@ppcc-pa.org.
1. Parent/Caregiver Survey:
Are you a parent of a child with CMC and IDD? We want to hear from you!
2. Expansion of Resources:
Are you aware of quality resources available to support families? Submit your recommendations!
3. Volunteer Program:
Learn more about upcoming volunteer opportunities with the Resource Matching Program
The PPCC Resource Matching Program is a part of the LEARN Initiative, a program of the Pediatric Palliative Care Coalition.
LEARN Meeting Highlights from 2024.
Aug 2023 - Meeting Focus: Use of the POLST and Out of Hospital DNRs with pediatric patients and an Environmental Scan aimed at pediatric palliative and hospice care resources in Pennsylvania. Click HERE to view a recording of the meeting. Click on View Here button for highlights from the meeting.
Nov 2023 - Meeting Focus: Resources in the "Plain" Communities for children with rare genetic disorders and building bridges between culture and medicine; PA Environmental Scan. Click HERE to view a recording of the meeting. Click on the View Here button for highlights from the meeting.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
