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Advocacy

PPCC Advocacy Statement

Pennsylvania Pediatric Palliative Care Coalition (PPCC) wants critically ill children across
the Commonwealth to have access to the life-enhancing service of palliative care.
This means ensuring that providers across the spectrum are fully connected, with
palliative care fully integrated, and that physicians, nurses, home health care
aides, and anyone providing services to these children fully understand the
benefits of, and how to provide, palliative care within the scope of their service
provision.

Thus far, we have been approaching the problem in two ways:
1. Ensuring that pediatric palliative care is part of an on-going dialogue – with
particular attention to appropriate level of service in rural communities.
2. Focusing on education – working to educate those providers who work with children
about the importance of palliative care.

Find my PA legislators here.

Find my federal legislators here.


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 child01.1_PQLC-Logo-rgb_2015ren. The Coalition works to promote public policy that will improve and expand access to high-quality palliative care.  Patient Quality of Life Coalition

 

Legislation

Federal Bill H.R. 3119: Palliative Care & Hospice Education and Training Act – PPCC is currently advocating for the 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

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.

Helpful Resources:

PPCC Concurrent Care Brief        NHPCO Concurrent Care Information and Toolkit

For further information, contact NHPCO.

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:

Pediatric Palliative and Hospice Care Task Force -Department of Public Welfare, Commonwealth of Pennsylvania