Lighting the way for children with medical complexity
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The LEARN Initiative aims to bring together Pennsylvania stakeholders dedicated to improving care for children with serious illness and those receiving palliative, end-of-life, and hospice services. This includes healthcare providers, medical professionals, therapists, clergy, caregivers, parents, and others committed to advancing pediatric palliative and hospice care throughout Pennsylvania.Together, we work to enhance support for children with life-limiting illnesses and their families across the Commonwealth.
Legislation Education Advocacy Research Networking
To be a part of the LEARN Initiative, contact PPCC Executive Director, Betsy Hawley.
Legislation
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.
Education
A 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.
PPCC Educational Series: PPCC believes in education that supports the concept and practice of children’s palliative and hospice care by providing seminars and workshops responsive to the educational needs of our community of caregivers, both families and professionals.
Advocacy
Pediatric Palliative Care Coalition (PPCC) wants children who are seriously ill to have access to the life-enhancing service of palliative and hospice care. This means ensuring that providers across the spectrum fully understand the benefits and how to provide palliative care to infants, children and teens by:
-Ensuring that pediatric palliative care is part of an on-going dialogue - with particular attention to appropriate level of service in rural communities
-Focusing on education - working to educate those providers who work with children about the importance of palliative care.
-Providing information and resources to families and caregivers on how to advocate for their children.
PPCC is committed to increasing awareness to advance pediatric palliative and hospice care. To become involved with the PPCC's advocacy efforts, contact Betsy Hawley, PPCC Executive Director. To learn more about our advocacy efforts, click here.
Research
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. Survey of Resources for Seriously Ill Children in Pennsylvania
Southwest PA Female Caregiver Research Study
PPCC is seeking to connect virtually with mothers, grandmothers, sisters, aunts, and other female caregivers in Southwestern PA caring for children with medical complexity who currently use pediatric supportive, palliative, or hospice care or qualify for these services. We are also looking to connect with professionals and clinicians in this field. Information gathered in this study supports further development of pediatric supportive, palliative, and hospice care programs for children and their families in southwestern Pennsylvania communities, as well as to enhance PPCC’s advocacy efforts throughout the state.
Network
PPCC-PA LEARN Initiative meetings are held quarterly via Zoom and are intended to bring together and build community for those supporting children with life-limiting illnesses, those at the end-of-life and those involved with pediatric supportive, palliative and hospice care.
All interested Pennsylvania stakeholders are invited to join this statewide collaborative effort highlighting timely topics in order to increase awareness, share expertise, and strengthen connections across the field.
We are always looking for those making a difference in the community to present at LEARN meetings to highlight the amazing work that is being done. If you are interested in presenting, please contact krista@ppcc-pa.org. Space is limited.
2026 LEARN Intitiative Meeting Schedule:
Wednesdays at 12pm ET via Zoom
March 25
June 24
September 23
December 16
Click here to register!
Caring for a child with medical complexity or other serious, life-limiting illnesses is overwhelming. This can be even more challenging when the child is also living with intellectual or developmental disabilities. Day to day life includes juggling appointments, treatments, medications, household responsibilities, work, and much more in order to meet the needs of the whole family often at the expense of the caregiver’s well-being. Knowing where to begin to find the right resources and finding time to search can feel impossible, leading to feelings of isolation and stress.
The LANTERN Initiative is designed to support parents and caregivers by educating and connecting families to trusted resources and while building a community of support as no one should navigate this alone. If you are managing these challenges, or know someone who is, let the LANTERN Initiative help to light the way.
The LANTERN Initiative is undergoing some exciting changes! Stop back soon! Questions? Please contact Krista Burgbacher, Program Coordinator, at krista@ppcc-pa.org.
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.
