Pediatric Palliative Care Coalition plays a key role in initiating and implementing systemic change through legislative action and advocacy work.
We meet with and inform Pennsylvania legislators about the importance of access and availability, education and funding for palliative and hospice services for children. In addition, our goal is to ensure that future legislation will encompass positive changes and much-needed improvements to pediatric palliative and hospice service reimbursement.
In the News – Congress failed to extend funding for the Children’s Health Insurance Program (CHIP) before it expired on September 30, 2017. This missed deadline has real implications for real children and families across the country. It is critical that Congress acts immediately to extend funding for the program for five years. Several leading child health and advocacy organizations shared that message in this CHIP Advocacy toolkit October 2017 for partners.
On October 11, 2017, help get Congress to act by clicking “Act Now” on the website SpeakNowforKids.
Article – Time.com – How Repealing Obamacare Would Harm Chronically Ill Children 2017
PPCC Advocacy Statement – PPCC Advocacy Statement
PPCC Legislative Brief – Concurrent Care for Children – The passage of the Affordable Care Act altered the Medicaid hospice benefit as it applies to children (age 0-20). This change holds potential for increased access to community-based supportive services for children with life-limiting illnesses. 2016 PPCCConcurrent Care Brief
Federal Bill – H.R. 3119 – Palliative Care & Hospice Education and Training Act –PPCC is currently advocating for the following federal bill relating to the education and training of healthcare professionals as they address end-of-life concerns for patients. Palliative Care & Hospice Education and Training Act
Patient Quality of Life Coalition – PPCC is a member of the Patient Quality of Life Coalition. The Patient Quality of Life Coalition was formed to advance the interests of patients and families facing serious illness, including survivors. The Coalition includes more than 25 nongovernmental organizations dedicated to improving quality of care and quality of life for these adults and children.The Coalition works to promote public policy that will improve and expand access to high-quality palliative care. http://patientqualityoflife.org/members
- House Bill #630 Palliative Care 2015 – Patient Comfort Act
- House Bill #2267 Telemedicine Act 2015
- Senate Bill #1342 Telemedicine Act 2015
Pediatric Palliative and Hospice Care Task Force Report (PPHC)
The PPHC Task Force, convened by then Secretary of the Department of Public Welfare Estelle Richman, was a collaboration of more than 190 parents, siblings, family members, caregivers, doctors, nurses, hospice workers, social workers, therapists, administrators, lawyers, educators, and researchers. The PPHC Task Force prepared a report identifying challenges and systemic gaps children and their families encounter when attempting to access palliative and hospice care services in Pennsylvania, while simultaneously offering recommendations to resolve the identified issues. Published in 2008, the task force report continues to highlight the major challenges facing PA families today. To view the full report: