Founded in 2001 by Lori Butterworth and Devon Dabbs, Children’s Hospice & Palliative Care Coalition is leading the growing movement to improve care for children with life-threatening conditions. CHPCC is a collaboration of parents, children’s hospitals, hospices, home health and grassroots agencies, and individuals who believe that the medical and emotional needs of children are unique and must be honored within the medical system. Children’s Hospice & Palliative Care Coalition provides training and support to hospice teams across the country so that when they are caring for a dying child they are able to meet the medical, emotional and spiritual needs of the child and the family. We also work with legislators and policy makers to promote health care policies and programs that address the complex medical, emotional, social, and practical needs of families who are experiencing great loss.
Our pediatric hospice and palliative care program The Partnership for Children provides family-centered care for nearly 100 families living in Central California every year and continues to grow as a model of care being used in communities around the country. The Partnership for Parents, a national network of bereaved parents, provides practical resources, information and grief support to families navigating their way through the journey of childhood illness and death.

Children’s Hospice and Palliative Care Coalition exists so that families of children with life-threatening conditions can have time together…time to laugh, time to love, to time grieve and time to remember.

We believe that:
• children living with life-threatening conditions deserve compassionate, family-centered medical care that embraces healing even when there is no cure.
• every family of a seriously ill child should have access to coordinated, comprehensive support that integrates medical, psychological, social, emotional, and spiritual services from the point of diagnosis throughout the course of treatment.
• our children are our legacy, and should have the opportunity to live life as fully as possible, regardless of the length of their life.

In the United States, approximately 400,000 children suffer from chronic, life-threatening conditions . Of these, about 39,750 die each year in tertiary care hospitals far from home. Although relatively small in comparison to adult mortality rates, the grief and loss caused by childhood deaths are enormous. For every child that dies, countless others struggle with serious and life-threatening conditions, families are torn apart, siblings are grief stricken, and far too often, they are neglected and confused.

Children’s Hospice and Palliative Care Coalition promotes compassionate, family centered care for families and loved ones of children diagnosed with a serious illness ages 0-21.



Overview
Children’s Hospice and Palliative Care Coalition is committed to ensuring that every dollar donated by our generous supporters is matched by a measure of love to the children and families for whom we exist.

Because most of the administrative costs such as rent, accounting, board development and office supplies are donated in-kind, we are able to keep our overhead and fund raising costs to less than 15% of our annual expenditures. The leadership of CHPCC is a partnership between parents, clinicians, business people and nonprofit professionals. Our program decisions are driven by our Parent Advisory Committee, a group of bereaved parents who share their experience as experts in the care of children with serious illnesses.

Our three core programs are summarized as follows:

(1) Compassionate Reimbursement Initiative for Children (CRI); is an initiative dedicated to changing healthcare policies that discriminate against children. CHPCC investigated and brought awareness to the shortcomings of existing hospice benefits as they applied to children. Under current federal law, in order for a child to qualify for hospice a parent must declare in writing that the child has fewer than six months to live and agree to forgo treatment intended to cure the disease or prolong the life of the child. This results in families left with the cruel and inhumane choice between trying to cure the child’s disease or focusing on quality of life and pain management.

CHPCC successfully led the initiative in Cailfornia to change these unfair and inhumane regulations andis now working with California’s Department of Health Care Services (DHCS) in the implementation of a new Pediatric Palliative Care Benefit package,which can dramatically improve access to end-of-life care for 18,000 of California’s children.
(2) Partnership for Children; based upon recommendations from the Institute of Medicine report “When Children Die: Improving Palliative and End-of-Life Care for Children and their Families” (2002), CHPCC designed the Partnership for Children, a model program offering critical care coordination in a family-oriented setting for children 0-21 with life-threatening conditions and their families. The Partnership for Children provides family-centered support to nearly 100 children who are living with a life-threatening condition and who also live at or below the poverty level.
Now institutionalized by DHCS as an endorsed replicable model for the State, the Partnership acts as a data collection site for the State and tracks the financial, medical, and social outcomes of a local, rural care coordination model as it impacts the children, families, local providers, and specialty pediatric care centers.
(3) The lack of a centralized resource designed specifically to help parents handle the trauma of a child’s life-threatening illness prompted CHPCC to create the Partnership for Parents a national network of bereaved parents. In addition to connections with parents across the country, the program offers an award-winning web resource (www.partnershipforparents.org). The site, the first and only bilingual web resource addressing the unique needs of parents with seriously ill children, addresses the needs of parents wherever they are in the trajectory of their child’s illness or through their bereavement process. Topics include: how to talk your child’s doctor, making sense of medical information and terms, preparing for crisis, and coping with grief, among others. Currently offered in English and Spanish, CHPCC is working to expand the language capacity of the site.
By providing these previously non-existent services, CHPCC is overcoming barriers to comprehensive and coordinated hospice and palliative care for children and families.

Founders and Executive Directors - Lori Butterworth and Devon Dabbs

Lori Butterworth has led numerous successful grassroots public policy and community engagement campaigns which have raised awareness and improved care for children with life-threatening conditions and their families. As Founder and Executive Director of Children’s Hospice and Palliative Care Coalition, along with Devon Dabbs, she led development and passage of the Nick Snow Children’s Hospice & Palliative Care Act of 2006. Signed into law on September 19, 2006, the bill will assure that California’s children can have access to compassionate family-centered care without having to give up treatment intended to save their lives. In 1999, Lori led the campaign which officially established September as Children’s Cancer Awareness Month in the State of California by executive order.
Lori is also the Founder and former Executive Director of Jacob’s Heart Children’s Cancer Association. Under her guidance, Jacob’s Heart grew from a small grassroots effort to a nationally recognized, award winning organization, which continues to provide life-enriching services to hundreds of families annually.
As a bilingual educator, Lori taught secondary Spanish in the Los Angeles and Oakland inner-city schools for more than a decade. She was instrumental in establishing a public high school for girls in rural Guatemala. Her linguistic skills and appreciation of cultural diversity have enabled her to bring about dramatic change and unity in diversely populated communities throughout the world.
Lori is the recipient of numerous awards including the Oprah Winfrey’s “Use Your Life” award, the California Association of Nonprofits Award for Achievement in Innovation She currently serves on the National Hospice & Palliative Care Organization’s Caring Connections Advisory Committee and the Mensajeros de Confianza Committee to Improve End-of-Life Care for Latinos.
Devon Dabbs has spearheaded national media campaigns on behalf of the American Red Cross and the Conrad N. Hilton Foundation, among others. She was instrumental in the launch of the Hilton Foundation’s 1st Annual International Humanitarian Conference in conjunction with the Hilton Humanitarian Prize and continues to serve as a consultant for the organization. In this capacity she has coordinated campaigns for Doctors Without Borders, St. Chrisopher’s Hospice, International Rescue Committee, Heifer International, and Operation Smile, among others.
As a documentary filmmaker, Devon has been a long-time advocate on behalf of children in crisis. Her credits include the Peabody Award-winning CBS documentary “Break the Silence: Kids Against Child Abuse.” In addition to segment producing, Devon developed a comprehensive educational marketing campaign in coordination with National Association for the Prevention of Child Abuse, in which reproducible materials were distributed to more than 90,000 schools nationwide.
Devon has also coordinated and launched numerous national and international media communications and promotional campaigns for both network and syndicated programming, and directed the media campaigns for the 50th and 51st annual Emmy Awards.
In 2001, Devon co-founded Children’s Hospice and Palliative Care Coalition and currently serves as Co-Executive Director. Devon was recently appointed to the board of the California Hospice & Palliative Care Association.

Clarke Paul Anderson, MD Pediatric Oncologist, City of Hope
Dr. Clarke Anderson is a pediatric oncologist specializing in the treatment of brain tumors at City of Hope in Duarte, California and has been on the Board of Children’s Hospice and Palliative Care Coalition since its creation. He is one of only a handful of pediatricians in the United States that is also certified by the American Board of Hospice and Palliative Medicine. His research in the global care of a dying child, adolescent and young adult has led to international recognition in the field of palliative care medicine.
Richard Behrman, MD, JD
Dr. Behrman was the Chief Editor on the 2002 Institute of Medicine Report “When Children Die.” It was upon this groundbreaking document that Children’s Hospice & Palliative Care Coalition was founded. Dr. Behrman is clinical Professor of Pediatrics at Stanford University and the University of California, San Francisco and George Washington University, Washington, D.C., Former Executive Chair, Federation of Pediatric Organizations (FOPO) Pediatric Education Steering Committee; Founder, Non-Profit Healthcare and Educational Consultants to Medical Institutions.
Bruce Berwald, LLB Administrative Law Judge
Bruce Berwald (pictured h ere on the left along with Board Members Andy Halliday, Karen Northup and Melissa Gilbert) has been an Administrative Law Judge for the State of California for more than 20 years and an Adjunct Professor of Law at Santa Clara Univ. School of Law for more than 15 years. In addition to the CHPCC Board, he is a board member of Inner Light Ministries in Soquel, Ca. He previously was a two term Trustee of the Los Gatos Union School District and headed two parcel tax campaigns in that district.
Margaret D’Arrigo-Martin
Vice President, D’Arrigo Farms, Bereaved Parent
Margaret D’Arrigo-Martin, Executive Vice President of D’Arrigo Brothers Company and mother of three children (Alexis Claire Martin - deceased 2003, SIDS victim) and Alex and Sterling, twins, 2-1/2 years of age, was recently awarded the 14th annual Woman of the Year by Ag Against Hunger for her outstanding community service to issues that effective the lives of women and children.
Lorry Frankel, MD, MBA
Chief, Critical Care Services, Lucile Packard Children’s Hospital
Lorry Frankel is the Chief of the Intensive Care Unit at Lucile Packard Children’s Hospital at Stanford. He is well-respected in the field of Pediatric Palliative Care as well as Critical Care. Lorry received the 2005 Humanitarian Recognition Award by the Chest Foundation from his work as an Executive Committee member of the Board of Directors for the Painted Turtle – a summer camp in Southern California dedicated to enriching the lives of children with chronic an d life-threatening conditions.
Melissa Gilbert (President)
Former President, Screen Actors Guild; Actor
Actor Melissa Gilbert, a recognized leader in entertainment, is giving voice to the needs of seriously ill children and their families in her role as spokesperson and President of the Board of Directors. As a mother of four and friend to many of the children she represents, Gilbert’s compassion and affability have brought national attention to the issue, while her business acumen, honed during her two term tenure as president of the Screen Actors Guild, has positioned Children’s Hospice and Palliative Care Coalition as a respected leader in the growing national movement to improve care for children with life-threatening conditions and their families.
Andy Halliday
Founder and CEO, OurStory.com
Andy Halliday is the founder and CEO of OurStory.com, where families collect, share, and preserve the important moments and memories that make up the stories of their lives. Telling the stories behind the pictures in the words and thoughts of those who shared time together creates a lasting legacy that can be viewed online for generations to come, or printed in beautiful hardcover books. Andy is a graduate of Dartmouth and the Harvard Business School, with over 25 years of executive management experience in the resort, retail, and consumer internet markets.
Terre Jacobs
President, Terre D. Jacobs & Associates, Real Estate Services
Terre Jacobs is a part of the top producing and most respected office worldwide with over 1.2 billion dollars in sales in 2002. Terre grew up in the Midwest, and after college in Denver, worked with architects and designers, both commercial and residential in Chicago. She then transplanted to the L.A, area, where she hit the ground running in the high-end real estate market. Terre specializes in the high-end luxury market in the Los Angeles area as well as worldwide.
Teri O’Rourke
Political Consultant (Secretary)
Teri Smith O’Rourke has spent more than 30 years helping to form public opinion in California. She served in public affairs positions with the legislature and the governor’s office before heading the California Safety Belt Coalition. Teri has been a member of numerous health care related committees and currently serves on the California Health Data Public Information Committee. Besides being a founding board member of the CHPCC her other interests include foster care reform and electronic health care records.
Karen Northup, CPA, CMA (Treasurer)
CEO, Corefino
Karen Northup has served in executive roles at a variety of successful venture-backed technology companies. In addition to founding and serving as CEO of Corefino, Karen sits on the Board of Directors of Document Command. Before founding her company, Corefino, Karen held CFO positions with Scout Media, Equitex, Telesuite, Rivals.com and Telocity (now directv). Karen has also held management and executive roles in a variety of companies, including GlobalCenter (now Global Crossing) and PWC.

Terri Warren, MSW
CEO, Trinity Care Hospice (Vice President)
Terri Warren (shown here on the left along with Board President, Melissa Gilbert, Gay Walker, RN and Glen Komatsu, MD) has been with Trinity Care Hospice for over seven years in many roles including Director of the AIDS Case Management Program, Staff Development Coordinator, and most recently as Vice President of Operations. Due to Terri’s unique set of skills, she brings a long term vision and commitment to Trinity Care Hospice. Receiving a Masters in Social Work from Boston College and a Bachelors Degree from College of the Holy Cross, Terri is committed to a vision in providing comfort care for all tiers of society.
Angela Chesnut –
Former Director Fraud Investigations, eBay.

Angela Chesnut has devoted much of her career to advocacy for children who were faced with challenging circumstances. Angela spent seven years in Washington, DC where she was a Special Agent for the Federal Bureau of Investigation, US Department of Justice. She investigated criminal cases where the victims were often minors or women who were exploited as prostitutes, indentured servants or migrant workers. Angela served as the Victim/Witness Coordinator during her tour in federal law enforcement. In this capacity, she worked with numerous state funded and nonprofit organizations in order to accommodate those who were in need of housing, employment opportunities and immediate medical attention and psychiatric care.
In 1999, Angela moved to California where she worked on behalf of victims of internet fraud in her role as the head of eBay’s where she developed and ran the Fraud Investigations and Compliance department.
Angela served as the Assistant Director for Bethlehem House, a transitional group home for developmentally disabled children in Wash, DC. Angela also spent two months working in remote areas of the Dominican Republic, helping villagers cope with widespread malnutrition and educating women about prenatal care and personal hygiene. She is fluent in Spanish and Italian.


Cassandra Cotton
Community Relations Outreach & Multicultural Representative, Nathan Adelson Hospice - Details to follow

Policy Committee
Barbara Biglieri, California Association Health Services at Home
Charity Bracy, MS, Children’s Hospital Association of California
Margaret Clausen, California Hospice & Palliative Care Association
Erin Aaberg Givans, Children’s Specialty Care Coalition
John Golenski, EdD, George Mark Children’s House
Advisory Committee
Barbara Beach, MD
Children’s Hospital Oakland
George Mark Children’s House
Ellen Brown, MD
Pathways Hospice
Vicky Bowden, PhD
Azusa Pacific University
Rev. Paul Brenner, MDiv
David Browning, LCSW
Initiative for Pediatric Palliative Care
Kate Eastman, PhD
Jason Program, Saco Maine
Betty Ferrell, PhD
End of Life Nursing Education Consortium, City of Hope
Robin Kramer, RN
UCSF Medical Center
Glen Komatsu, MD
Trinity Kids Care Hospice
Sally Sehring, MD
UCSF Medical Center
Barbara Sourkes, PhD
Lucile Packard Children’s Hospital at Stanford
Liz Sumner, RN
Elizabeth Hospice
Christy Torkildson, MSN
George Mark Children’s House
Gay Walker, RN
Trinity Kids Care Hospice
Lonnie Zeltzer, MD
UCLA Medical Center

Through CHPCC’s efforts, pediatric hospice and palliative care is being institutionalized in our local and statewide community. Measurable outcomes to this end include:
I. Implementation of the Nick Snow Children’s Hospice & Palliative Care Act (2006), the first step in increasing access to hospice and palliative services for an estimated 18,000 of California’s children and providing a model for 12 other states.
II. Launch of the Partnership for Children in September of 2005, a community-based children’s hospice and palliative care program recently institutionalized as a DHCS endorsed model in California. Provided 5,000 hours of direct care coordination to 150 families. Provided over 350 hours of capacity building and education to local agencies addressing the unique needs of seriously ill children and their families.
III. Launch of the Partnership for Parents web resource in April 2005: 40,430 registered visits, and a corresponding 24,432 visits registered for the Spanish language site (padresconpadres.com).
Delivery of Service
The services offered by CHPCC through its three core programs are non-duplicative and unique in both their approach and delivery. Each was designed with the inclusion of parents, providers, and policy makers in an effort to address an unmet need either on a national, statewide, or local level. Through research, advocacy and strategic alliances, CHPCC has created a comprehensive pediatric hospice and palliative care benefit package supported by DHCS. The Partnership for Children is effectively bridging chasms that have existed between seriously ill children and their families, and community-based and specialty care providers, ensuring a seamless continuum of care where none previously existed.
The Partnership for Parents, the only resource of its kind, offers information that is difficult if not impossible to find elsewhere. Through providing these services, CHPCC has successfully identified the areas where previous services fell short and has adequately met these unique and crucial demands on behalf of seriously ill children and their families. CHPCC’s systematic approach to dealing with the root causes of the program through CRI; addressing gaps in community-based service through the Partnership for Children; and, offering immediate and comprehensive support through the Partnership for Parents is creating a safety net for children with life-threatening conditions in California and establishing a replicable model that is already drawing the interest of a national audience.

In January 2005, after 3 years of intense advocacy on behalf of children with life-threatening conditions, Children’s Hospice & Palliative Care Coalition successfully convinced the Schwarzenegger administration to initiate policy changes, which will expand Medi-Cal reimbursement for palliative and end-of-life care when the patient is a child. The administration is currently consulting with the Coalition on developing and implementing the policy changes including a children’s hospice eligibility waiver mandated by the Nick Snow Children’s Hospice Palliative Care Act of 2006.

CHPCC has also just received three major awards, each of which underscores the profound difference we have made in the lives of children with serious illnesses and their families:

Children’s Hospice was recently honored by the California Association of Nonprofits as the recipient of the 2007 Achievement in Innovation Award.

Our Partnership for Children’s nurse care coordinators, Sophia Schultz and Shoshana Spielman, received the Hospice Foundation’s 2007 Kendall Inspiration Award.

Co-founders, Lori Butterworth and Devon Dabbs were named 2007 Women of the Year by the Santa Cruz, California Chamber of Commerce.