Advocacy

Pennsylvania Pediatric Palliative Care Coalition (PPCC) wants children who are seriously ill 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.

To date, we have been approaching the problem in two ways:

  • 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.

PPCC is committed to increasing awareness, providing resources and information and acting in the best interest of all involved to advance pediatric palliative care in the Commonwealth of Pennsylvania. PPCC welcomes the participation of those interested in furthering this cause. To become involved with the advocacy efforts of PPCC, please contact Betsy Hawley, PPCC Executive Director.

PPCC LEARN Initiative  

The PPCC LEARN initiative is specific to our pediatric palliative and hospice care community in Pennsylvania with the participation of healthcare providers, medical professionals, therapists, clergy, caregivers and parents. LEARN stands for:

      * Legislation * Education * Advocacy  
               *  Research * Networking

These activities are key to the mission of PPCC, and PPCC will host regular, virtual LEARN events to advance this mission.      

PPCC welcomes those interested in advancing the cause of pediatric palliative care in Pennsylvania.
To be a part of the LEARN Initiative, contact PPCC Executive Director, Betsy Hawley.

Next LEARN Meeting: May 13 at 4:00PM EST.
More information coming soon!

LEARN dates for 2024:
Feb 12 / May 13 / Sept 9 / Nov 11
All LEARN meetings are 4:00-5:00 PM EST.

LEARN Meeting Reports:
Feb 2024 Meeting
Nov 2023 Meeting
  
Aug 2023 Meetin
g         
Apr  2023 Meeting
Jan 2023 Meeting

CALL TO ACTION -
POLST Legislation

Pennsylvania State Senator Gene Yaw (R - District 23) has reintroduced Pennsylvania Orders for Life Sustaining Treatment (POLST) legislation. SB 631 would update and revise Title 20 of Pennsylvania law to codify use of POLST by medical professionals across all healthcare settings for patients who voluntarily wish to complete a POLST order. This bill advances the work that has been done for decades to ensure quality care for those at the end of life.

If you are able to support SB 631, (personally or as an organization) please contact your state senator and ask for their support. The Pennsylvania Medical Society has also developed an easy-to-use form for emailing your legislator with an option to customize with your message.    

Click HERE
for a sample letter you can customize with your reasons for supporting this legislation.    

Click HERE
to complete an easy-to-use form for emailing your legislator for supporting this legislation.

CLICK HERE FOR MORE INFORMATION ON SB 631

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.

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:

For further information, contact PPCC


Children's Hospice International A non-profit organization that pioneers and promotes the idea that critically ill children should have access to hospice/palliative care along with curative care from the time their life-threatening illness has been diagnosed.

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.

384 Fox Chapel Road, Pittsburgh, PA 15238 | Contact Betsy Hawley at: betsy@ppcc-pa.org

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.