Model Programs and Services
Here are a few highlights of programs and services offered by Children’s Hospice and Palliative Care Coalition members and partners:
California Children’s Services
CCS is a statewide program in California that treats children with certain physical limitations and chronic health conditions or diseases. CCS can authorize and pay for specific medical services and equipment provided by CCS-approved specialists. The California Department of Health Services manages the CCS program. Larger counties operate their own CCS programs, while smaller counties share the operation of their program with state CCS regional offices in Sacramento, San Francisco, and Los Angeles. The program is funded with state, county, and federal tax monies, along with some fees paid by parents.
Contact for Santa Cruz County CCS:
Liz Falade, MD, MPH Medical Consultant
efalade@health.co.santa-cruz.ca.us
California Coalition for Compassionate Care
CCCC is a statewide collaboration of more than 60 organizations – including healthcare providers, consumers, and regulatory agencies – devoted to improving end of life and palliative care for Californians. www.finalchoices.org
Contact:
Judy Citko, JD
Executive Director
916-552-7573
916-552-2615
jcitko@finalchoices.org
1215 K Street, Suite 800
Sacramento, CA, 95814
Central Coast Visiting Nurse Association (CCVNA)
Serving the Central Coast of California
The Visiting Nurse Association and Hospice is dedicated to providing the highest quality health care to residents of the Central Coast by meeting their individual needs in an ethical, effective, caring and fiscally responsible manner.”
Contact:
Mitch Matthews
Director of Provider Relations
831-648-3797
mcmatthw@ccvna.com
5 Lower Ragsdale Drive
Monterey, CA
Children’s Hospital Los Angeles, Pain Management and Palliative Care Team
Founded in 1901, Children’s Hospital Los Angeles has been treating the most seriously ill and injured children in Los Angeles for more than a century, and it is acknowledged throughout the United States and around the world for its leadership in pediatric and adolescent health. Children’s Hospital Los Angeles treats more than 62,000 children a year in its Emergency Department. It admits more than 11,000 children a year to the hospital, and nearly 50 percent of those admissions are children under four years of age. There are more than 287,000 visits a year to its 29 outpatient clinics and laboratories; nearly 5,000 visits at community sites through its Division of Adolescent Medicine. Children’s Hospital Los Angeles is able to offer the optimum in multidisciplinary care, with 85 pediatric subspecialties and dozens of special services for children and families.
Contacts:
Meghan S. Middleton, RN, PNP, CNS
Nurse Consultant, Pediatric Nurse Practitioner
Phone: 323-361-6419
Fax: 323-660-8983
mmiddleton@chla.usc.edu
4650 Sunset Boulevard, MS #74
Los Angeles, CA 90027Michael H. Joseph, MD
Assistant Professor of Anesthesiology and Pediatrics
Phone: 323-669-2262
Fax: 323-660-8983
mjoseph@chla.usc.edu
4650 Sunset Blvd., MS #3
Los Angeles, CA, 90027
Children’s Hospital of Oakland
Serving The Bay Area of California
Because full-service hospitals just for children are extremely specialized, few communities can support one. Children’s is proud to be one of only 45 freestanding children’s hospitals in the nation, not connected to a university or other institution. Like the others, Children’s Hospital Oakland recognizes that children’s medical needs are vastly different from those of adults. That’s why Children’s Hospital designs its healthcare especially for children. At Children’s Hospital Oakland we don’t measure things by adult standards and divide by half. As the only independent children’s hospital in the Bay Area, we give kids our undivided attention. The mission of Children’s Hospital Oakland is to ensure the delivery of high quality pediatric care for all children through regional primary and subspecialty networks, a strong education and teaching program, a diverse workforce, state of the art research programs and facilities, and nationally recognized child advocacy efforts.
Contact:
Florence Kuyt
Neonatologist
510-919-2216
fkuyt@yahoo.com
Coastal Kids Home Care
Serving Central California
The mission of Children’s Hospital Oakland is to ensure the delivery of high quality pediatric care for all children through regional primary and subspecialty networks, a strong education and teaching program, a diverse workforce, state of the art research programs and facilities, and nationally recognized child advocacy efforts. http://www.coastalkidshomecare.org/
Contact:
Margy L. Mayfield, RN, BSN
Director of Clinical Services
Phone: 831-594-1770
Fax: 831-796-0334
margy@coastalkidshomecare.org
1020 Merrill Street, Suite 2015
Salinas, CA 93901
Dakota Winds
Serving bereaved individuals across America
A family owned company that originated from grief and grew because of hope. Our personally designed gifts celebrate life.. a life to be remembered and honored. A portion of each product sold is donated to the Dakota Blackman Page Memorial Fund which provides support to families who have been effected by chronic and life threatening conditions. www.dakotawinds.org
Contact:
Beth Page
Owner & Founder
910-529-1403
beth@dakotawinds.org
Degriefing with Lyn Prashant
The premise of the Degriefing Process is simple. Grief creates a state of physical and mental disharmony. The body and mind are inextricably linked. Therefore, health care techniques that attempt to alleviate the effects of grief must include both physical and mental treatments. Including somatic treatments along with appropriate verbal counseling will greatly promote the healing process. In addition, educating an individual about grief and teaching him or her practical self-care techniques can minimize the potential for developing serious, long term disorders when that individual invariably experiences grief again.
Contact:
Deb Gitlin
Level I Degriefing Practitioner
debgit@aol.com
San Jose, CA
Department of Pediatric Hematology/Oncology CITY OF HOPE
Serving Southern California
City of Hope is a NIH Comprehensive Cancer Center that treats children, adolescents and young adults with a variety of malignant and non-malignant oncologic and hematologic diseases. Palliative care services include multidisciplinary symptom management, psychological and spiritual support, and bereavement services. City of Hope also has aformal bereavement program to support the ongoing psychosocial needs of the family. www.coh.org
Contact:
Clarke Anderson, MD
626-359-8111 x65439
canderson@coh.org
Duarte, CA
End of Line Nursing Education Consortium (ELNEC)
The End-of-Life Nursing Education Consortium (ELNEC) project is a national education initiative to improve end-of-life care in the United States. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, specialty nurses in pediatrics, oncology, critical care and geriatrics, and other nurses with training in end-of-life care so they can teach this essential information to nursing students and practicing nurses. The project, which began in February 2000, was initially funded by a major grant from The Robert Wood Johnson Foundation (RWJF). Additional funding has been received from the National Cancer Institute (NCI), the Aetna Foundation, the Archstone Foundation, and the California HealthCare Foundation. http://www.aacn.nche.edu/elnec/about.htm
Contact:
Pam Malloy, RN, MN, OCN
Project Director
202-463-6930, x238
pmalloy@aacn.nche.edu
1 Dupont Circle, NW, Suite 530
Washington, DC 20036
George Mark Children’s House
George Mark Children’s House is the first freestanding children’s respite and end of life care facility in the United States. The House, located in San Leandro, California, offers respite support (round-the-clock), transitional care, and end of life care for children with life limiting or life threatening illnesses. All care is informed by the principles of palliative care. Additional support services are available to all family members. Services are provided regardless of a family’s ability to pay. www.georgemark.or
Contacts:
John D. Golenski, Ed.D.
Executive Director
510-346-4624
510-346-4620
www.georgemark.org
2121 George Mark Lane
San Leandro, CA 94578Christy Torkildson, RN, MSN, PHN
National Director for Education, Research and Professional Relations
925-984-3201
torkc@sbcglobal.net
2121 George Mark Lane
San Leandro, CA 94578Claire Vesely, RN, BSN
Intake Coordinator
cvesely@georgemark.org
2121 George Mark Lane
San Leandro, CA 94578
Hospice Caring Project
Serving Santa Cruz County, CA
Hospice Caring Project provides expert medical treatment and compassionate support to individuals and families facing life-threatening illness. As a patient’s medical care shifts from curative towards comfort, we can help provide critical support to both the patient and family, increasing the quality of life for all. Our Hospice Team members are experts in symptom management and pain control as well as emotional and spiritual support. They work closely with individuals, their doctors and families to create a plan of care that reflects the patient’s end-of-life wishes. www.hospicesantacruz.org
Contacts:
Silvia Austerlic
Latino Community Liaison
831-430-3069
sausterlic@hospicesantacruz.org
940 Disc Drive
Scotts Valley, CA 95066Tree Dunbar, RN
Director of Clinical Services
831-430-3000
tdunbar@hospicesantacruz.org
940 Disc Drive
Scotts Valley, CA 95066
Hospice Foundation for the Central Coast
Serving Monterey and San Benito Counties
Hospice Foundation promotes and supports end-of-life care and services for Monterey and San Benito counties through community education, fundraising, prudent management of assets, and conscientious disbursement of grants to quality, non-profit organizations that provide these services. www.hffcc.org
Contacts:
Alice Kinsler
Executive DirectorDavid Green
Former President
dgreen@g2readvisors.com
Hospice of the Valleys
Serving Riverside County, CA
Hospice of the Valleys is located in Southwest Riverside County, California, about an hour north of San Diego and west of Orange County. www.hosvc.org
Contact:
Laurence H. Boggeln, MD, CHA
Medical Administrator
951-672-1666
lboggeln@hovsc.org
Hospice of the Valley
Serving Santa Clara County, CA
Our mission is to affirm dignity, hope and comfort for those facing a life-limiting illness by providing compassionate palliative, hospice, and grief care. Our professionals and volunteers serve the physical, emotional, and spiritual needs of individuals and their families. We enhance our community through education, research, advocacy, and volunteerism. www.hospicevalley.org
Contact:
Jeanne L. Wun
Community Relations Manager
Phone: 408-489-6787
Fax: 408-559-3462
jwun@hospicevalley.org
4850 Union Avenue
San Jose, CA 95124
Initiative for Pediatric Palliative Care (IPPC)
The Initiative for Pediatric Palliative Care (IPPC) is both an education and a quality improvement effort, aimed at enhancing family-centered care for children living with life-threatening conditions. IPPC’s comprehensive, interdisciplinary curriculum addresses knowledge, attitudes and skills that health care professionals need in order to better serve children and families. The IPPC Team is comprised of nationally renowned educators and clinicians with expertise in pediatric palliative care. Several leading children’s hospitals have implemented IPPC quality improvement projects and have pilot-tested the IPPC curriculum. IPPC is a broad-based collaborative effort that includes children’s hospitals, pediatric units in general hospitals, and hospice or home care programs that serve children living with life-threatening conditions and their families. www.ippcweb.org
Contact:
Deborah Dokken
Associate Director
ddokken@starpower.net
Jacob’s Heart Children’s Cancer Association
Serving Monterey, Santa Cruz, and San Benito Counties, CA
Jacob’s Heart Children’s Cancer Association offers programs that improve the quality of life for children with cancer and support their families in the challenges they face. We provide compassionate care and practical support by offering counseling and support groups, in home and hospital visits, resource library and referrals, community education, arts programs,
celebrations, and financial assistance. Our support services are holistic in nature, aiming to address the families’ myriad needs. All services are provided in both English and Spanish. www.jacobsheart.org
Contact:
Sally Green
Executive Director
831-724-9100
sally@jacobsheart.org
Kaiser Santa Clara Pediatric Hematology and Oncology Department
Contacts:
Nidal Mahgoub, MD
Phone: 408-554-9810
http://www.permanente.net/homepage/doctor/nidalmahgoub/Carolyn Russo, MD
http://www.permanente.net/homepage/doctor/carolynrusso/
Alan Wong, MD
http://www.permanente.net/homepage/doctor/alanwong/710 Lawrence Expressway
Dept 190, 1st floor
Santa Clara CA 95051
Kids Path Hospice & Palliative Care
Serving North Carolina
Kids Path is a specialized program of Hospice and Palliative Care of Greensboro that provides care for seriously ill or grieving children. Kids Path also helps grieving children adjust to important losses through death. Counseling, support groups, art and play therapy, “fun” days, and one-day retreats and workshops are available to all children in our service area, not just for those whose important person was a Hospice patient.
Contacts:
Jean Berry, RN, CAP/C
Case Manager
336-544-2284
Greensboro, NCMarion Taylor, RN, MN, CPNP
Co-Chairperson
336-544-5437
mtaylor@hospicegso.org
Levine’s Children’s Hospital/Carolinas Healthcare System
Serving the Carolinas
Palliative Care at Levine Children’s Hospital is a consult service provided by an interdisciplinary team for children who face life threatening illnesses. The team works very closely with your child’s primary healthcare provider to deliver the best care possible to your child and your family. The goal is to provide the best quality of life possible for your child and family while minimizing suffering. Palliative care can be combined with other treatment therapies with a focus on living life as fully as possible.
Contact:
Lynna Alvarnas RN,
Neonatal and Pediatric Palliative Care Coordinator
Phone: 704-381-7732
Charlotte, NC
Lucile Packard Children’s Hospital
Serving Palo Alto, CA
Packard Children’s Hospital is a world-class, non-profit hospital devoted entirely to the care of babies, children, adolescents and expectant mothers. www.lpch.org
Contact:
Barbara Sourkes, Ph.D.
Pediatric Palliative Director
Phone: (650) 497-8963
Fax: (650) 725-9591
bsourkes@stanford.edu
725 Welch Road, Room 2129
Palo Alto, CA 94304
National Hospice and Palliative Care Organization
NHPCO’s vision is a world where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer. Their mission is to lead and mobilize social change for improved care at the end of life. www.nhpco.org
Contact:
Barbara L. Bouton, MA, FT
Director of Professional Development
703-674-6681
bbouton@nhpco.org
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
Pathways Kids
Serving the California Bay Area
Pathway Kids provides both home hospice as well as palliative care to children with life threatening illnesses and their families in the San Francisco area and Bay Area.
Contact:
Ellen Brown
Medical Director
ebrown@pathwayshealth.org
Pediatric Community Alliance and Community Support Program
Pediatric Community Alliance is a community coalition started in 2001 to address the needs of infants, children, adolescents with a serious illness and their families. Our goals are to:
1)Coordinate and link existing services
2) Educate the community and providers concerning pediatric palliative care
3) Assess and address unmet needs of infants, children and their families
4) Advocate for proper pediatric palliative care in our community.
Contact:
Shannon Bruggen, MSW, LCSW
Program Coordinator
Phone: 336-331-1347
Fax: 336-659-0461
Shannon.Bruggen@hospicecarecenter.org
101 Hospice Lane
Winston-Salem, NC 27103
San Diego Hospice and Palliative Care
Serving San Diego County, CA
San Diego Hospice & Palliative Care is a not-for-profit, independent health care organization providing expert pain management and compassionate care to adults, children and infants living with serious or life-limiting illness.
The mission of San Diego Hospice & Palliative Care is to prevent and relieve suffering and promote quality of life, at every stage of life, through patient and family care, education, research and advocacy.
Contact:
Deborah Dunne
Chief Administrative Officer, Vice President
Phone: 619-278-6546
Fax: 619-278-6576
ddunne@sdhospice.org
4311 Third Avenue
San Diego, CA 92103
Shriners Hospital
Shriners Hospitals for Children has been providing state-of-the-art care for more than 80 years. Our network of pediatric specialty hospitals focus on orthopaedic conditions, burn injuries, spinal cord rehabilitation, and cleft lip and palate repair.
Our staff believes in and practices a “family-centered-care” approach to treatment. We believe the the family plays a vital role in a child’s ability to overcome an illness or injury. Shriners Hospitals helps the family provide the support the child needs by involving the family in all aspects of care and recovery. The purpose of all Shriners Hospitals is to provide care for our children so they can lead fuller, more productive lives. http://www.shrinershq.org/Hospitals/_Hospitals_for_Children/
Contact:
Lynne Kerr
Pediatric Neurologist
801-673-8174
lynnekerr@mac.com
Fairfax Road at Virginia Street
Salt Lake City, UT 84103
St. Luke’s Home Care
St. Luke’s Children’s Hospital at our Boise facility is a hospital within a hospital—with a professional staff and services to care for the special needs of children. Our unique services include a 24-hour emergency center designed and staffed just for kids, intensive care units for newborns and children, child life specialists to help young patients adjust to the hospital and an outpatient specialty center to provide multidisciplinary services to children with special needs.
Contact:
Nancy Chaney, RN, BSN
Pediatric Case Manager
chaneyn@slrmc.org
Boise, Idaho
The Hospice of the Florida Suncoast
The Children’s Hospice and Palliative Care program of The Hospice of the Florida Suncoast offers comprehensive interdisciplinary palliative care to children and families from the time of diagnosis through the treatment process, including bereavement support if applicable. The Hospice’s pediatric continuum also includes home health and hospice services offered to children and their families in whatever residence they prefer. The pediatric program also supports two community based coalitions and is an active participate in a state Medicaid demonstration program through the United States Congress. www.thehospice.org
Contact:
Stacy Orloff, Ed.D., LCSW
Director and Palliative Care and Children’s Services
Phone: 727-523-3457
Fax: 727-523-3257
stacyorloff@thehospice.org
5771 Roosevelt Blvd.
Clearwater, FL 33760
The Jason Program
The Jason Program is a non-profit, community- based pediatric palliative care program with a dual mission. The Jason Program organizes and delivers innovative patient, family and community centered medical, emotional and spiritual support services to Maine children with life-threatening and fatal conditions.
The Jason Program also promotes its community-based model of patient and family focused, interdisciplinary, coordinated care through education and training that can be adapted to individual communities and implemented in other regions nationwide.http://jasonprogram.org/
Contact:
Kate Eastman, Psy.D., LCSW
Executive Director
kate@jasonprogram.org
TrinityKids Care Hospice
Serving Orange County, CA
In her many years of nursing and administration Gay Walker has endeavored to bring healing to those in need. Most recently she has been honored with the work of pediatric hospice, ensuring that children “live well and die gently.”
Contact:
Gay Walker, RN
Manager
rejoicewalker@sbcglobal.net
Orange County, CA
UC Davis Medical Center, Pediatric Intensive Care Unit
The UC Davis Children’s Hospital has the region’s only Pediatric Intensive Care Unit (PICU) that offers pediatric cardiothoracic surgery services — expert care for children who have undergone heart surgeries. The PICU also cares for children who have contracted infectious diseases, who have consumed poisonous substances, or have had transplants and other complex and traumatic procedures. PICU services are available 24 hours a day, 365 days per year. http://www.ucdmc.ucdavis.edu/children/services/icu/services/picu/
Contact:
Rebecca Case, RN
Clinical Resource Nurse
rebecca.case@ucdmc.ucdavis.edu
Vitas Hospice
Serving patients in 16 states
VITAS Innovative Hospice Care®, a pioneer and leader in the hospice movement since 1978, is the nation’s largest provider of end-of-life care. Headquartered in Miami, Florida, VITAS (pronounced VEE-tahs) operates 42 hospice programs in 16 states (California, Connecticut, Delaware, District of Columbia, Florida, Georgia, Illinois, Kansas, Michigan, Missouri, New
Jersey, Ohio, Pennsylvania, Texas, Virginia and Wisconsin).
Contact:
Elizabeth Jenkins, RN
Team Manager
714-921-2273
elizabeth.jenkins@vitas.com
Orange County, CA