On January 12, 2008 the PPHC Task Force convened under the leadership of the Honorable Estelle Richman, Secretary of the Department of Public Welfare in Harrisburg. Both my mom and myself served on the task force; mom as a co-facilitator for the Pain and Symptom Management subcommittee and myself as one of five co-chairs overseeing the production and direction of the task force's final report and Executive Summary.

The task force was comprised of almost 200 members across many disciplines including doctors, nurses, social workers, clergy, hospice professionals, homecare professionals, educators, administrators and of course several parents and family members who have lived, or are still living with a child with a life threatening, life limiting illness or condition. Without this unique combination of insightful, compassionate and experienced members, this task force report would not be nearly as thorough or compelling. I am so proud to have been a part of this groundbreaking work for all the children and families involved.

There were 12 subcommittees topics developed for study: Patient and Family Issues / Pain and Symptom Management / Hospital Care / Hospice Care / In-Home Care / Care in Alternate Residences and Facilities / Systemic Financing and Funding Streams / Education, Training and Certification of Professionals / Medical Ethics / Research / Community Resources and System Enhancements / Quality of Life Enhancement Areas. Each subcommittee was charged with identifying current barriers to quality pediatric palliative and hospice care specific to their topic, and developing recommendations for improvement in these areas.

After several months of work, research and discussion, each subcommittee developed their own chapter report. It was the responsibility of the five co-chairs to then develop an Executive Summary of the task force chapters. This can be found at the beginning of the report and also includes 5 major recommendations developed to begin to implement the changes required to fill the gaps in care and increase access and availability of Pediatric Palliative and Hospice care for our most precious children and their families.

The PPHC Task Force report was submitted for publication in November 2008 and is now available for review on the Department of Public Welfare website at www.dpw.state.pa.us .

Next up for 2009

One of the five major recommendations made in the Executive Summary is to create a statewide Pediatric Palliative and Hospice Care Coalition comprised of family members and professionals, for the purpose of advocating for the needs of children living with life threatening and life limiting conditions and their families, raising public awareness, and disseminating information. I am proud to say that Liam's Foundation is again taking a lead role in this endeavor.

Since the completion of the PPHC Task Force report, the Children's Hospice and Palliative Care Coalition ( CHaPCC )has been established. www.pa-chapcc.org . Being led by myself here in Eastern PA, and another bereaved mother in Pittsburgh, many of the members of the PPHC Task Force joined this unique and passionate coalition to not only be a resource for the children and families that are in need of information and guidance, but to ensure that the recommendations of their task force report are acknowledged and implemented.

The CHaPCC Coalition will work effortlessly to create resources for families and professionals seeking information about pediatric palliative and hospice care. We will advocate for our most precious children and their families, some at their most difficult time of life. And we will educate the public and professionals about the importance of offering and funding pediatric palliative and hospice care programs and services.

Our work is far from over, but the accomplishment of the past 5 years are more than we at Liam's Foundation could have imagined. Our name is now known across the country through the work we have done and we continue to move forward until Liam's legacy is realized; every child living with a life threatening / life limiting condition or disease shall be offered palliative care and hospice services along their continuum of care.

Please accept our sincere thanks for supporting our work and Liam's legacy.

And “NEVER TRAVEL FASTER THAN YOUR GUARDIAN CAN FLY”

Peace,

Katey Lawson, Liam's mom
Vice-president, Liam's Foundation
Co-chair, PPHC Task Force
Co-founder, CHaPCC

This year, Liam's Foundation is actively working to:

• Assist in the development of a statewide needs assessment for Pediatric Palliative Care in Pennsylvania.
• To participate on a statewide Pediatric Palliative Care Task Force in partnership with the Department of Public Welfare and other stakeholders such as tertiary care facilities, home care agencies and Early Intervention.

After meeting with Senator Connie Williams in November, 2006 to discuss the fundamental need and value of a Pediatric Palliative Care Needs Assessment, we were introduced to Dr. Estelle Richmond, Secretary of the Department of Public Welfare. This meeting concluded with the discussion of the development of a Statewide Pediatric Palliative Care Task Force involving all aspects of the pediatric healthcare continuum.

Liam's Foundation has also developed a professional relationship with the Hospice of Lancaster County in Lancaster, Pennsylvania. After meeting several times while working towards our goal of more comprehensive end of life care for children, we had several collaborative meetings which also included the Pennsylvania Hospice Network.

Liam's Foundation will continue to meet and collaborate with the key people of the state of Pennsylvania and it's most dedicated healthcare providers to achieve the most resourceful, effective and compassionate end of life care available for our most fragile children.

Meet with Dr. Estelle Richmond, Secretary of the Department of Public Welfare to discuss the state of pediatric palliative care, a statewide needs assessment, and a statewide pediatric palliative care task force.

Bayada/Liam's Foundation/Hospice of Lancaster County/Pennsylvania Hospice Network – meet to promote TelePal program and begin collaborative relationship.