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Welcome to the Inaugural Edition of PPC NOW!
On behalf of the National Pediatric Palliative Care Task Force, we are thrilled to introduce the inaugural edition of our newsletter and to update you on our progress! With representation from all thirteen members of the National Coalition for Hospice and Palliative Care (The Coalition), the American Academy of Pediatrics, American Psychological Association, Association for Child Life Professionals, and three family advocates, the Task Force is uniquely positioned to collaboratively advance the field of pediatric palliative care. Our work is also supported by a dedicated group of alternate Task Force members and our Family Advisory Council.
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Since fall 2020, the Task Force has leveraged its collective expertise to advance relevant national PPC initiatives, legislation, and policies. We have also established guiding vision, mission, and goal statements in addition to finalizing our operating guidelines.

We have strategically focused our energy and attention on three key priority areas and established three workgroups to implement action plans: 1) Payment & Finance, 2) Needs Assessment, and 3) Knowledge & Awareness. Over the next year, the Task Force will assess, initiate, and promote critical actions in these three domains to enhance and increase children’s access to high-quality pediatric palliative care services.

We speak for the entire Task Force when we say how honored we are to be able to do this work. Our deepest gratitude to the Cameron and Hayden Lord Foundation and the Cambia Health Foundation for funding this important initiative and to the Coalition for its support. We look forward to continuing to update you on our progress! In the meantime, should you have any questions or comments please feel free to reach out to us at

Rachel Thienprayoon, MD
Cheryl Ann Thaxton, DNP
Logo Logic

We are delighted to premiere the National Pediatric Palliative Care Task Force logo.

The pinwheel graphic signifies interdependency, connectivity, and collaboration - core values to advancing the field of pediatric palliative care. The varying size, shape and color of the graphic elements reflect diversity, equity, and inclusion – critical guiding tenets to achieving the PPC Task Force’s mission and vision. As an initiative of the Coalition, the design mirrors the layout of the Coalition’s logo to demonstrate our connection to our home organization.
Payment & Financing Workgroup
Members: Co-chair Melissa Hunt (SPPCP) Co-chair Tressia Shaw (NAHC), Holly Davis (NHPCO), Sarah Friebert (CAPC), Kristin James (PPC Coalitions), Dannell Shu (Family Advocate), Terri Warren (CHA)
The payment and financing workgroup’s overall mission is to “Activate interdisciplinary collaborations with key payment & finance decision-makers and create real-world payment & financing solutions to continuously improve access to pediatric palliative care through financial sustainability.”
Access will improve when more organizations can afford to invest in and provide PPC services. We are committed to building pediatric representation within key payment & finance decision-making stakeholder groups and with subject matter experts to advance pediatric palliative care sustainability.
With our mission in mind, we have decided to start with the goal to assess and define a model payment and financing structure which could be modified to fit regional resources. We are also working to determine how to best assess the current state of PPC payment and financing across the national landscape. We will be involving our organizational partners to evaluate existing data and determine what information may be important to key stakeholders.

Needs Assessment Workgroup
Members: Co-chair Savithri Nageswaran (NPCRC), Co-chair Solimar Santiago-Warner (SWHPN), Jennifer Bartz (Family Advocate), Allison DeLaney (APC), Danielle Eaves (ACLP), and Rachel Thienprayoon (PCQC)
The Needs Assessment workgroup reviewed the recommendations identified by PPC leaders in 2019 and used them as a guide to develop our goals. The workgroup recognized the importance of mapping pediatric palliative care needs at different levels:
  1. patients and families;
  2. multi-disciplinary clinicians across settings;
  3. other stakeholders (e.g. program builders, leaders, and state coalitions). 
We are currently working on identifying existing needs assessment data and tools available through the National PPC Task Force’s membership organizations (e.g. CAPC Pediatric Needs Assessment, NHPCO’s Pediatric Hospice &  Palliative Care Survey) and other aligned organizations (e.g. Courageous Parents Network, family advisory councils, state coalitions). We have identified a few states including California, Pennsylvania, and Colorado that already have or are in the process of mapping pediatric palliative care resources and services. Our goal is to codify a standardized process and create a toolkit for states interested in developing their own state-specific PPC service map.

Knowledge & Awareness Workgroup
Members: Co-chair Rachel Kentor (APA), Co-chair Jenni Linebarger (AAP), Tammy Kang (AAHPM), Matt Norvell (HCCN), Fiona Sampey (PAHPM), Jim Santucci (Family Advocate), and Cheryl Ann Thaxton (HPNA)
As a first step, we are developing and distributing a survey to National PPC Task Force member organizations to assess how pediatric palliative care (PPC) is portrayed both within and by the organization. In other words, what knowledge and awareness do they already have, and share.
We anticipate the results of this survey will help:
  • Assess whether a common definition of PPC exists
  • Highlight PPC educational offerings provided by each organization
  • Determine what online content the organizations have regarding PPC (both internally and externally)
  • Identify the next tier of organizations and groups to survey
We are excited to have a broad look at knowledge and awareness of PPC within our Task Force organizations, and anticipate identifying some knowledge gaps and future opportunities.
Family stories and perspectives on caring for a child with a serious illness
The National PPC Task Force is proud to partner with Courageous Parents Network (CPN) on Eight Days a Week, featuring educational PPC resources from CPN’s digital platform that orient, empower and accompany families and providers caring for children with serious illness. Each edition will focus on a PPC topic.

At its core, CPN is about helping parents feel they are being or have been the very best parent they can possibly be for their child. It is a tall order and medical providers naturally play a vital role in helping with this, so for the inaugural edition we’re talking about what it means to be a “good parent.”

This video features a mom talking about the evolution of her internal definition of being a good parent over time as she accepted her limitations. Her experience directed her to become a pediatric palliative care social worker.

This video features a mom and a pediatric chaplain on how parents experience self-imposed pressure in the hospital to be liked by their child’s medical team as part of being ‘a good parent.’

CPN collaborates in research where appropriate. This blog post by a mom came out of a collaboration with Dr. Meaghann Weaver et al in advancing the Good Parent research originated by Dr. Pamela Hinds.

We look forward to sharing more content with you in our next edition, but in the meantime, we encourage you to spend some time exploring CPN’s vast treasure trove of professionally produced and reviewed resources including videos, podcasts, downloadable guides, and learning pathways.
Unpacking the Magic:
The Role of a PPC Social Worker

Danielle Jonas, MSW, LCSW, PhD Student, New York University, SWHPN alternate on the National PPC Task Force
Caitlin Scanlon, MSW, LCSW, Pediatric Palliative Care Social Worker, Riley Hospital for Children/Indiana University Health

While there are many palliative care teams who do not have a social worker designated specifically to their team, those that do find their social worker to be an invaluable team member. So what do pediatric palliative care social workers (PPC SW) do, anyway?! Why exactly are these psychosocial wizards so magical?
Besides fulfilling traditional social work responsibilities, such as community organizing, policy making, and child advocacy for abuse and neglect, PPC SW also:
  • Function as clinicians, interdisciplinary educators, program developers, brokers, and researchers (Gwyther et al., 2005)
  • Assess and tend to the needs of patients and families with regards to their biological, psychological, social, emotional, spiritual, practical informational and financial requirements (Gwyther et al., 2005)
  • Play a critical role in supporting staff members across disciplines and subspecialities in navigating moral distress, compassion fatigue and burnout (Jonas et al., 2021).
Specifically trained to approach patients and families from a strengths perspective, PPC SW meet families where they are at, while remaining mindful of how they are impacted by the systems in which they exist and interact with.
Learn how these wizards work their magic!
Talk at the National Level
The Coalition and the National PPC Task Force Respond to Discussion Draft of the HCBS Access Act
On April 26, the Coalition with input from the PPC Task Force submitted recommendations to Senators Hassan (D-NH), Casey (D-PA), Brown (D-OH) and Rep. Dingell (D-MI), on their recently released discussion draft of the Home and Community Based Services (HCBS) Access Act available for stakeholder feedback. The proposal seeks to mandate HCBS in Medicaid to provide critical services and create national, minimum requirements for home and community-based services.  One of the Coalition’s primary recommendations is that Medicaid home and community-based services should include access to community-based palliative care for adults and children.

Advancing Care for Exceptional (ACE) Kids Act
The ACE Kids Act grants state Medicaid plans the option to create a state plan amendment focused on improving coordination of care for children with medical complexity through the establishment of health homes. The program is intended to go into effect in October of 2022, and based on the current eligibility criteria, all children receiving palliative care services would meet the definition for a medically complex condition. Dr. Conrad Williams, Medical Director, Palliative Care Program, at the Medical University of South Carolina talks about what palliative care professionals can do now to prepare and advocate for implementation of PPC services under the ACE Kids Act. Click here to learn more.

State of the State Talk
In August 2020, Louisiana became the first state to amend its provisions governing hospice services under the Louisiana Administrative Code to enable children to receive hospice care concurrent with life-prolonging treatment. While concurrent care is available nationwide under the Affordable Care Act (ACA), Louisiana’s actions ensure that children in their state will have access to these critical services regardless of how the Supreme Court rules on the ACA.

Illinois legislators are currently reviewing SB2384, which will mandate that the state’s medical assistance program cover community-based pediatric palliative care from a trained interdisciplinary team for eligible children in Illinois. There is strong support for the bill, and it is expected to pass. Medicaid has stated support for the state plan amendment and reported that the current HFS budget can be reallocated to cover the cost without requesting additional funding. The Greater Illinois Pediatric Palliative Care Coalition (GIPPCC) spearheaded the bill and is currently working with the Illinois Medicaid department on a care delivery and payment model, which will ensure that all children who would benefit from community-based palliative care have access.
The Critical Role of State Pediatric Palliative Care Coalitions
Betsy Hawley, Executive Director, Pediatric Palliative Care Coalition of Pennsylvania
Kristin James, Executive Director, Greater Illinois Pediatric Palliative Care Coalition
Devon Dabbs, Project Director, National Pediatric Palliative Care Task Force
Over the last two decades, Statewide Pediatric Palliative Care Coalitions (SPPCC) have been the catalyst for pioneering legislation, research initiatives, and educational materials and resources that have been core to advancing the PPC field and increasing access. SPPCC may vary in size and composition, but across the country, they are a critical conduit for bringing stakeholders together to share ideas, information, and resources and create solutions towards the common goal of improving the lives of children with medical complexity.
While the pediatric voice is often the “small voice in the room” of adult healthcare concerns, SPPCC are committed to ensuring that the pediatric voice is heard.
SPPCC often focus on cultivating and maintaining relationships with state legislators, policy makers, and government officials so that they can react quickly to opportunities for input and action. Through collaboration and partnership with key stakeholders, SPPCC successfully spearheaded legislation and/or instituted federal waivers that authorize in-home PPC services in Florida, California, Colorado, New York, Vermont, and Massachusetts and similar efforts are currently underway in Illinois and Michigan. The charge to implement concurrent care for children under the Affordable Care Act has largely been led by SPPCC. Other advocacy actions prompted and/or supported by SPPCC include a school mandate to honor POLST (MI), paid family leave for family caregivers (PA), and an amendment of the state hospice provisions to protect and preserve pediatric concurrent care (LA).
SPPCC are an essential provider of PPC professional development and education opportunities hosting workshops and conferences throughout the year, including the annual PEDI-HOPE National Conference (TX). Recognizing the need to build workforce capacity and competencies, SPPCC have also partnered with academia and clinical leaders to develop a POLST for Pediatrics curriculum (CA), a graduate certificate in PPC (OR/WA), and a robust library of PPC webinars on topics ranging from advance care planning to pain management.
Development of informational resources is another central function of SPPCC. The PA coalition has created several free supportive communication tools to make life easier for caregiving families including a phone app, a care plan book, a Caring Conversations Toolkit, and a Creative Expressions Toolkit. Other SPPCC resources include pediatric decision aids on breathing machines, CPR, and tube feeding (CA), a patient satisfaction survey (MD/VA), and a bereavement website (IL).

At their core, SPPCC are about fostering connections and partnerships that generate a stronger voice, encourage broader idea sharing, and expand the network of those passionate about pediatric palliative care. It truly takes a village and a lot of coordination to instigate the systemic changes necessary to advance pediatric palliative care, and SPPCC are essential to building the network of champions to drive this critical work forward.

For a list of SPPCC and PPC champions click here.
For more information on the SPPCC network, contact Betsy Hawley
Copyright © 2021 National Coalition for Hospice and Palliative Care, All rights reserved.

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