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Welcome to the Spring 2022 Edition of PPC NOW!
Our new year is off to a fantastic start! We are thrilled and grateful to announce that the Cameron and Hayden Lord Foundation has funded the Task Force for another two years and that we received additional grant funding from the Ho Chiang Foundation. This strong show of support ensures that our work can continue unimpeded, and we have been taking full advantage of this gracious opportunity.

We have established strategic priorities for 2022-23 and are finalizing our goals for the year.  We presented our progress to the field at the AAHPM/HPNA Annual Assembly in February and Pediatric Palliative Care Grand Rounds at Boston Children’s Hospital in January. On May 11th, we are teed up to present to the Network of State Coalitions. This virtual presentation is free and open to all, so we invite you to join us to learn more about our work and opportunities to engage. Please contact Betsy Hawley to register.
 
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It is hard to believe that the last two years have passed so quickly.  We are excited to see significant progress in each workgroup (see below for more details) and anticipate driving forward several initiatives this year.  
 
Our mission is to advance equitable access to pediatric palliative care for everyone. Our field has grown exponentially over the past several years, and we are here to serve all of you in addition to our patients.  Please reach out, drop us a note, and let us know what you need and how we can support you at peds@nationalcoalitionhpc.org.  Thank you for the privilege of serving our field.

Warmly,
Rachel Thienprayoon, MD
Cheryl Ann Thaxton, DNP
PPC Task Force 2022-2023 Strategic Priorities

We used the output from the annual meeting to reaffirm and further delineate our key priorities for 2022-23. Our conversations centered on the "What," specifically what are we looking to do, the "Why," for what purpose and to what end, and the "How," defining the means by which the Task Force can achieve and further our influence and impact in each of these areas. We are excited to share them with you and look forward to hearing what you think, just drop us a line at peds@nationalcoalitionhpc.org.
 
CAPC, in Partnership with PPC Task Force, Publishes Pediatric Clinical Training Recommendations for All Clinicians

The Center to Advance Palliative Care (CAPC), in partnership with the National PPC Task Force, has developed clinical training recommendations for all clinicians caring for neonates, perinates, infants, children, adolescents, and young adults with serious illness and/or complex needs. The recommendations, along with tailored learning pathways, are now available on the CAPC website. You can find them here.
 
The training standards are multi-disciplinary, with targeted recommendations for pediatric physicians, physician assistants, APRNs, RNs, social workers, psychologists, and chaplains. The PPC Task Force played a key role in the development of the recommendations, providing expertise and input from all disciplines including family caregivers. Thanks to all those who contributed!
Payment & Financing Workgroup
Members: Co-chair Melissa Hunt (SPPCP), Co-chair Tressia Shaw (NAHC), Holly Davis (NHPCO), Sarah Friebert (CAPC), Kristin James (PPC Coalitions), Alexis Morvant (AAHPM alternate), Stacy Orloff (NAHC alternate), 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.”
 
Over the next year, the workgroup will continue to collaborate with the Center to Advance Palliative Care (CAPC) on the creation of a pediatric payment and finance toolkit and with the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC) on the development of a Medicaid payment model and qualifying patient and provider criteria for community-based pediatric palliative care services. In line with these activities, the group will also be mapping patient costs from the family and provider perspectives and developing a model payment structure, which could be modified to fit regional resources. 

Want to learn more? Please feel free to email us at peds@nationalcoalitionhpc.org.


Needs Assessment Workgroup
Members: Co-chair Savithri Nageswaran (NPCRC), Co-chair Jennifer Bartz (Family Advocate), Solimar Santiago-Warner (SWHPN), Jori Bogetz (PCQC alternate), Danielle Eaves (ACLP), Camilia Hallahan (Family Advocate), Rachel Thienprayoon (PCQC)
 
The Needs Assessment workgroup will spend this year identifying existing pediatric palliative and hospice care program data from (1) needs assessments conducted by national organizations over the past 5 years, (2) literature review, and (3) state-level coalitions and stakeholders. With this information, we will seek to ascertain gaps in existing national pediatric hospice and palliative care programmatic data, and develop a plan to fill address those gaps.

If you know of any relevant data resources or information that might help us assess the PPC landscape, please email us at peds@nationalcoalitionhpc.org.

Knowledge & Awareness Workgroup
Members: Co-chair Rachel Kentor (APA), Co-chair Jenni Linebarger (AAP), Amanda Borchik (APC), Karen Gieger-Behm (HCCN alternate), Rebekah Halpern (PAHPM alternate), Lisa Humphrey (AAP alternate), Tammy Kang (AAHPM), Kathie Kobler (HPNA alternate), Matt Norvell (HCCN), Fiona Sampey (PAHPM), Jim Santucci (Family Advocate), Cheryl Ann Thaxton (HPNA), Amanda Thompson (APA alternate)
 

The Knowledge & Awareness workgroup spent the last year assessing how pediatric palliative care (PPC) is portrayed both within and by our 16 National PPC Task Force member organizations . As we shared earlier, among our findings:

  • 8 out of 15 have a formal group dedicated to PPC
  • 9 out of 15 have dedicated PPC representation
  • 13 out of 15 do not have a formal or working definition of PPC
  • 11 out of 15 partnered with others on projects related to PCC
  • 4 out of 15 conducted a needs assessment related to PPC in the last three years

We are leveraging the findings to talk further with our member organizations about how we can build cohesion and aligned commitments on the organizational integration of PPC language, representation, and practices.

We look forward to keeping you apprised of our progress. If you have questions or would like to learn more about our work, please email us at peds@nationalcoalitionhpc.org.

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. This month, we are exploring how as a field we can better support bereaved parents who are expecting.

Can you imagine anticipating a new baby after the death of a child?  This situation isn't as rare as you might think but it is rarely discussed, which exacerbates how isolated and ignored and befuddled bereaved-and-expectant parents feel. At the urging of such parents, Courageous Parents Network developed a series of videos from parents in this situation speaking gently and honestly about the range of emotions they navigate: the joy, the fear, the ambivalence. These parents feel muted and unseen by most of their clinicians. But together we can change that. 

This video features a mom of two sons, soon to be three, talking about the complexities of losing her eldest son, Andy, and finding out she was pregnant within the same year. She explores how the timelines overlapped, the confusion of welcoming a second child into the home when she has already had that experience, and the juxtaposition of focusing on bereavement and embracing her pregnancy..

Another mother of two sons, soon to be three, talks about the complicated expectation that her pregnancy means she has moved on from the loss of her second son, Sage. Here she explains that Sage will always hold space as her child and that this new pregnancy does not dismiss his experience and could never replace him.

In this video, the mom of two daughters, the eldest of whom passed away from Type II Gaucher’s Disease at 16 months, encourages providers to ask questions when they’re not sure, especially when it comes to how a family might want to talk about their child who has passed during a subsequent pregnancy.

"I live everyday with the memories of my son, and it will never be apart from me. I could have 10 more children and that will always be my truth."

For more information and perspectives on this topic and others, 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
Talk at the National Level
Exploring Opportunities to Raise Awareness at the National Level
The Task Force is working with Senator Jacky Rosen (D-NV) and the American Academy of Pediatrics to raise awareness among policy-makers about the need to assess children's access to pediatric palliative care services. We look forward to keeping you updated on our progress, so stay tuned!

State of the State Talk
Illinois Mandates Private Payer Coverage for Home-Based PPC and Concurrent Care
The Prairie State continues to make groundbreaking strides towards advancing children's access to critical health care services. Illinois legislators recently passed SB3819, which amends the state's Insurance Code to require private insurance companies to provide coverage for home-based palliative and concurrent hospice care for children. The legislation unanimously passed out of both the Illinois Senate and House and is now awaiting Governor Pritzker’s approval and official signature. This builds off the success last year when a similar bill, SB2384, also passed unanimously mandating Medicaid to create a homebased pediatric palliative care program that allows children to receive community-based palliative and hospice care while continuing to pursue curative treatment and disease-directed therapies.  

Louisiana Advances Major Tax Shift for Parents of Stillborn Children
Louisiana HB 146 signed into law in July 2021 as Act 467 enables parents of a stillborn child to qualify for a one-time $2,000 state income tax credit during the taxable year. The legislation, deemed monumental by maternal and child healthcare advocates, reduces tax inequalities for all families who bear the heartbreaking and economic burden of recovery after an unexpected loss. “This legislation is a small measure of support to demonstrate to families that their babies lived and will not be forgotten,” explains Kimberly Novod, a Task Force family advisor and executive director of Saul’s Light, a New Orleans-based nonprofit that provides support and advocacy for NICU and bereaved families.
The Task Force Partners with the Pediatric Palliative Care Webinar Series to Promote Education and Access

We are delighted to announce a partnership with the team behind the PPC Webinar Series. Each edition of PPC NOW will offer free access to one of the series' professionally-produced webinars featuring national leaders in the pediatric palliative care and hospice field.
This month's featured webinar is Transition Planning for the Fully Dependent Child, a panel presentation by Julie Hauer, MD, Alyssa Siegel, MD, parent advocate Barbara Swoyer with moderator Kerri Padget. This webinar will be free to PPC NOW readers until May 31, 2022. To start watching click here.
"This webinar was stocked full of very practical ideas and helpful information to assist me in having difficult conversations with families!!"
Pennsylvania’s Pediatric Palliative Care Coalition (PPCC), Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), Children’s Hospice & Palliative Care Coalition of California (CHPCC), and the CSU Shirley Haynes Institute for Palliative Care launched the series in 2018 to raise the visibility of pediatric palliative care and to build clinicians’ competencies and confidence in providing care to children.  The webinars are designed to provide pediatric content in a cost-effective and accessible manner by allowing easy access at a convenient time to the learner without adding travel time and expenses.  The one-hour sessions also allow bite-sized learning and incorporation into team-based activities.  The series focuses on commonly requested topics and highly sought-after speakers who can share their expertise with a national audience rather than replicating the same topic in multiple venues. 

To learn more about the PPC webinar series or register for the May 17th webinar, Honoring Relationship in Pediatric Palliative Care, click here.
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