Current News

A large part of our work for 2009 was to develop the Pennsylvania Children's Hospice and Palliative Care Coalition. This was one of the five recommendations put forth in the PPHC Task Force report of 2008. That work continues today with three working subcommittees: Legislative and Advocacy, Web Site Development, and Regional Centers of Expertise. This effort will continue to be a work in progress so that every child and family living with a life-threatening, life-limiting illness or condition can receive information, options and support . To learn more about the Pennsylvania Children's Hospice and Palliative Care Coalition, please visit the website at www.pa-chapcc.org . To read the Pediatric Palliative and Hospice Care Task Force full report or Executive Summary, please visit CHaPCC's website or www.dpw.state.pa.us , keyword Pediatric Palliative and Hospice Care.

In addition to the efforts stated above, Liam's Foundation continues to work within our local communities to improve access and availability to quality care and services for our most precious children and their families. Most recently, a grant was presented to Lauren's House of Coatesville in the form of all new playground equipment for their outdoor play area. Lauren's House is a day care created specifically for medically fragile children. It is licensed by the Commonwealth of Pennsylvania as a Pediatric Prescribed Extended Care Center (PPECC). And it is one of the types of resources identified in the task force report to be much needed yet generally unavailable. Another reason Lauren's House is so unique and valuable is because they allow the parents and care givers of medically fragile children to continue their employment and the financial support of their families with the confidence of knowing that their special needs child is being cared for by expertly trained nurses and therapists, as they would be at home.

We also continue to educate ourselves in the PPHC field by attending continuing education conferences. In April, I was one of very few parents to attend the Pediatric Ethics; Advancing the Interests of Children conference held at the Cleveland Clinic in Ohio. It always strikes me how few parents can be found at these conferences. But I love being able to speak openly and honestly with the professionals whom often times have a hand in molding our and our children's futures.

A new organization within Pennsylvania has also been established through the Office of Medical Assistance (OMAP) in Harrisburg. This group of volunteers is referred to as the Statewide PPHC Work Group . This entity is separate from and has a different mission than the statewide coalition, CHaPCC. This Statewide PPHC Work Group will aim to create a more efficient and effective payment and reimbursement system for Pediatric Palliative and Hospice services. We will work with all the major insurance carriers, both public and private, to help create and implement this new model.

Another exciting development as we move towards the end of 2010 is new legislation! Representative Frankel of Pittsburgh has worked diligently with coalition members in western PA to develop two new pieces of legislation. These legislative measures deal directly with two very important concerns that families have had to deal with up until this point. House Bill # 2610 – Children's Access to Concurrent Care Act will ensure that any child will have the option of hospice services without having to forego curative measures. Presently, most insurance companies do NOT allow these services to be given concurrently as they refer to it as a duplication of services – which we know is not the case. The second piece of legislation is an amendment to present legislation named House Bill # 2611 - Medical Care Availability and Reduction of Error Act (MCARE). With the new amendment, these continuing education credits must now include Palliative Care training, and in some cases Pediatric Palliative Care training.

And lastly, on the national level, new grass roots movements are joining together across the country to network and guide each other through the variety of programs and services available in their states and across the country. This group of trailblazers, called the National Network for Pediatric Palliative Care , will inevitably be instrumental in developing the Federal legislation and national standards that are absent from today's very compartmentalized system. Liam's Foundation will be there to lend our support and expertise in any way possible.

Even now, seven years into our work for Liam's Foundation, I remain amazed and excited about what we have accomplished and what we are working towards. This is a very productive time for the Pediatric Palliative and Hospice Care movement. I feel very lucky to be a part of it. Everything we do and everything we accomplish is a testament to our love and devotion to our Angel Liam. And none of it would be possible without the support of our family, friends, and annual golf outing participants and sponsors.

Thank You!! And “Never fly faster then your Guardian Angel can fly.”

Katey Lawson
Liam's Mom

2009 Initiatives

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

2007 Initiatives

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.

July 30, 2007

Meeting with Liam's Foundation/Hospice of Lancaster County/Pennsylvania Hospice Network/David Cassarett, MD MA. To discuss specifically the scope of the needs assessment. David was introduced to us through Joan Harold, Medical Director of HLC. David works for the VA Center for Health Equity, Research and Promotion, University of Pennsylvania.

July 10, 2007

Meeting with Bayada regarding the creation of an advisory committee for TelePal.

June 25, 2007

Bayada presentation to Hospice of Lancaster County and Liam's Foundation for physician presentation of TelePal.

June 14-15, 2007

Annette and Katey also had the privilege of participating as members on the planning committee for a very unique conference. The Children's Hospitals and Clinics of Minneapolis held it's first Pediatric Palliative Care Forum. 100 invitation-only participants gathered and collaborated together. Among them were the Who's Who of the pediatric palliative care experts in the country as well as several parents who have been active in the pediatric palliative care movement for several years.

Liam's Foundation was not only represented at this event by Annette and Katey, but also co-sponsored the event specifically enabling many of the families to attend without financial hardship.

A final report of the Pediatric palliative Care Forum is currently being developed and will be displayed on our website as soon as it is released.
April 17, 2007
Presentation to the Women's Giving Circle in Lancaster, Pa. entitled “Hidden in Plain View; The Children and Families Behind Closed Doors.”
January 26, 2007

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.

January 17, 2007

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

Upcoming Events
October 11, 2007
Meeting with Bayada and Liam's Foundation to redefine the goals and objectives of the TelePal Program.
October 4, 2007
We have been invited back for a second time to lecture at the University of Pennsylvania graduate nursing class about the issues and concerns particularly as they affect the continuity of care for the home-based pediatric patient.  Pediatric palliative care is a relatively 'new' field, indeed a new specialty for physicians, nurses and allied paraprofessionals. 
October 2, 2007
Liam's Angel Birthday
Sept. 28, 2007

Liam's Foundation Fourth Annual Golf Outing to be held at Broad Run Golfer's Club in West Chester, Pa.

Sept. 27, 2007

Annette and Katey have been invited back as honored guests to the Women's Giving Circle 2007 Funding Proposal Presentation Meeting at the Hospice of Lancaster County.

December 11-12, 2006

Annette and Bob attend the ATA Telehealth conference in Washington D.C. regarding upcoming telehealth bills and laws in process.

September 22, 2006

LLF Third Annual Golf Outing held at Tattersall Golf Club in
West Chester, PA

September 25-26, 2006
Annette and Katey attended the American Telemedicine Association (ATA) annual technology conference held in Orlando, FLA
April 17, 2006
Annette and Katey are invited and present in front of the Women's Giving Circle at the Hospice of Lancaster County. The presentation is titled "Hidden in Plain View; The Children and Families Behind Closed Doors."
February, 2006
Annette and Katey are invited to participate in an orientation program for new staff nurses at Exceptional Care for Children in Newark, DE. The facility will officially open February 2006.
Annette and Katey meet with representatives from Pennsylvania's State Department of Welfare to discuss the future allocation of funds to support a pilot telemedicine program for pediatric patients.
January, 2006
Annette and Katey along other LLF board members meet with Bayada Home Care to discuss a future partnership in telemedicine for their pediatric population.
In the News
July 13, 2004
Comforting Liam - The Daily Local News
November, 2004
Confronting a New and Evolving Reality: Parents and Family Roles in Decision Making - Presented by Annette O'Brien at the first National Pediatric Palliative Care Conference in Michigan, Nov. 2004
Recent Publications
Spring, 2004
A Grandmother's Grief and Lingering Questions: A Visual Case Study Annette O'Brien, R.N. - American Academy of Hospice and Palliative Medicine 
Fall, 2004
Liam's story is published on the web site of the National Alliance for Children with Life Threatening Conditions - NACWLTC
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