Lighting the way for children with medical complexity
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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.
PPCC has been approaching the situation in these ways:
3. 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.
PPCC Concurrent Care Brief
Concurrent care is for all children with a life-limiting diagnosis to continue to receive curative or life-prolonging treatment along with hospice care, avoiding the impossible choice between life-prolonging and hospice care. Helpful Resources:
Contact PPCC for more information.
Federal Bill S.2243: 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.
The PPCC 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.
LEARN stands for:
Legislative, Education, Advocacy, Research and Networking.
Next LEARN Meeting:
September 9 at 4:00PM EST
Click HERE for more information.
Hospice Action Network: Policymaking 101
The Hospice Action Network (HAN) is the advocacy affiliate of the National Hospice and Palliative Care Organization (NHPCO). NHPCO is the nation’s largest and oldest membership association for providers who care for people affected by serious and life-limiting illness.
PPCC Newsletter: Advocacy - How to Work with Your Local Legislator on Advocating for Your Child
Pennsylvania 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. The task force report continues to highlight the major challenges facing PA families today.
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.
