Friends and Colleagues –

lettertof5commissioners_062209

As you may know, the Governor proposed complete elimination of the Healthy Families Program. He also put forth a proposal to lower the financial eligibility for the program from 250% of FPL down to 200% of FPL. Thankfully, the Budget Conference Committee rejected both of these proposals. The Budget Conference Committee asked for private foundations or organizations to fund the remaining gap to fully fund Healthy Families.

Some of my clients have sent a letter to the First Five Commission Board Members below to ask them to provide $90 Million in funding to close this gap. Also attached is a listing of the First Five Board Members.

We encourage your organizations to send similar letters ASAP, as the MRMIB may vote on June 29th to impose a “waiting list” for Healthy Families starting on July 1st! Any connections you may have with local First Five Commissions would be helpful, too.

Several of our friends in the Legislature, including Senator Steinberg and Speaker Bass, are also asking First Five to assist and we are grateful for this action.

Call or e-mail if you have any questions! Thanks, Terri (for 100% Campaign & PICO CA)

Please address each letter individually, thanks!

First Five Commissioners - email info@ccfc.ca.gov
David Kears, Carla Dartis, Dr. Maria Minon, Molly Munger, Don Attore, Eleni Tsakopoulos-Kounalakis

Terri Cowger Hill, Owner
Cowger & Associates
Legislative Advocacy & Consulting to Improve
Health Care in California

Do you remember why we started the Children’s Hospice and Palliative Care Coalition?

Today, we are asking you to support our continued efforts on behalf of seriously ill children and their families by becoming an official member of CHPCC.

Become a member. Together, we can make a difference.

You will receive a membership card and certificate along with these and other benefits

Membership Benefits include:

• Participating in our annual legislative day at the state capitol
• Timely updates from Sacramento about children’s healthcare issues
• Networking through quarterly conference calls on topics related to innovations within pediatric palliative care
• Notices about job opportunities in children’s healthcare and hospice
• Access to feedback from our Partnership for Parents Advisory Council
• Discounted registration fees for selected CHPCC programs, events, and materials
• Password protected online educational training through BES
• Web acknowledgement of your membership through childrenshospice.org

And, with your help, CHPCC succeeded! Our accomplishments include:

➢ Enactment and implementation of the Nick Snow Children’s Hospice & Palliative Care Act of 2006.

➢ Development of the new Children’s Hospice and Palliative Care Benefit in collaboration with California’s Department of HealthCare Services, to increase hospice and palliative services for an estimated 17,000 of California’s children.

➢ Launch of the award-winning Partnership for Children, a community-based care coordination program recently institutionalized as a Department of Healthcare Services endorsed model in California.

➢ Development and launch of the Benefit Education Support and Training in Pediatrics program, or BEST in Pediatrics. a statewide educational initiative designed to ensure maximum utilization of California’s new Pediatric Palliative Care Benefit.

➢ Created the first and only bilingual web resource addressing the unique needs of parents caring for a seriously ill child. (www.partnershipforparents.org).

➢ Established a Family Advisory Council with an expertise in palliative care to support and advise CHPCC’s advocacy efforts.

Click here to become a member now.

Angel, our inspiration

Diagnosed at age 12 with osteosarcoma, an aggressive bone cancer, Angel, an avid soccer player, went from spending his days on the field to a hospital bed. After several months of treatment, Angel’s doctors, explaining that there was nothing else to be done, sent the distraught family home—a community 70 miles from the nearest children’s hospital. Given that they had no car or home care, Angel’s parents were told to call 911 and to go to the local hospital if his pain became too intense.

At home, Angel’s condition worsened rapidly, but his doctor was unable to refer him to hospice since his family didn’t want to give up hope that a clinical trial might cure his disease. Three days later, Angel was rushed to the local hospital’s crowded emergency room. The staff was unfamiliar with Angel’s treatment protocols and unsure of how to proceed. Hours passed. Angel’s mother begged the staff to do something, anything to help. A decision was made to take Angel upstairs to a hospital room. But on the way—gripping his mother’s hand and in pain—Angel died. His father and siblings sat downstairs in the lobby, unaware and unable to say goodbye. Even now years later, his parents struggle to find peace, haunted by the memory of their oldest son’s final moments in life.

In 2001, we founded the Children’s Hospice and Palliative Care Coalition (CHPCC) because we discovered that there were thousands of devastating stories like Angel’s—stories that broke our hearts and fueled our ambition. We reached out to you, and you listened. Together, we undertook the mantle of change and vowed to speak loudly and clearly on behalf of children who are too little and too sick to speak for themselves.

Definition of Pediatric Palliative Care (PPC)

Developed by Children’s Hospice & Palliative Care Coalition’s Professional Advisory Committee, 2007

Pediatric Palliative Care is both a philosophy of care and an organized, structured system of delivering care to children living with life threatening conditions and their families. The goal of Pediatric Palliative Care is to prevent and relieve suffering and to maximize quality of life for children of all ages, and their family members/support systems.

This family centered approach to care is provided by an interdisciplinary team of professionals including medicine, nursing, social work, chaplaincy, nutrition, pharmacy, therapists and other health care professionals. Pediatric Palliative Care offers expert pain and symptom prevention and management. Honest discussion around the child’s medical condition serves as the foundation for collaborative decision-making regarding goals of care. This patient-focused, family centered, holistic health care incorporates the physical, emotional, social and spiritual needs of the child and family to enhance their capacity to cope with a life threatening condition.

Pediatric Palliative Care can be delivered concurrently with life-prolonging care or as the main focus of care and is treatment that should be started early in the trajectory of the condition. It preserves the integrity of the family during the condition progression, addressing anticipatory grief and bereavement support following the death.

Acronyms and Terms Commonly Used in Pediatric Palliative and Hospice Care

A good website for additional medical acronyms:

http://www.medindia.net/acronym/index.asp?alpha=A&page=5

AB - Abortion
ABD - Abdomen
ABG - Arterial Blood Gases
ac - Before
ADL - Activities of Daily Living
Afebrile - No Fever
AGA - Appropriate Gestational Age
AIDS - Acquired Immunodeficiency Syndrome
ALL - Acute Lymphocytic Leukemia
AND - Allow Natural Death (alternate to DNR)
AND - Allow Natural Death
ASD - Atrial Septal Defect
Auth. - Authorization
AV - Related to atrium/(a) and ventricles of the heart
AV - malformation A congenital anomaly of arteries and veins in the brain
AV - malformation A congenital anomaly of arteries and veins, usually in the brain
AV - shunt Arterial venous shunt used for dialysis
BID - Twice a Day
BiPAP - BiLevel Positive Airway Pressure
BM - Bowel Movement BMH - Bone Marrow HarvestC N A Certified Nurses Aide
BMT - Bone Marrow Transplant
C-PAP - Continuous Positive Air Pressure
Cardiac Cath. - Invasive procedure used to diagnose heart conditions
Cath. - Catheder or tube used for various purposes
CCS - California Children’s Services
CCVNA - Central Coast Visiting Nurses Association
CF - Cystic fibrosis
CFK - Comfort for Kids
CHCC - Children’s Hospital Central California
CHD - Congenital Heart Disease
CHDP - Child Health Disability Prevention program in Family Health Services
CHDP - Congenital Heart Disease
CHF - Congestive Heart Failture
CHLA - Children’s Hospital of Los Angeles
CHLA - Childrens Hospital Los Angeles
CHO - Children’s Hospital Oakland
CHOC - Children’s Hospital of Orange County
CHPCC - Children’s Hospice and Palliative Care Coalition
CK - Coastal Kids
CLD - Chronic Lung Disease
CLS - Child Life Specialist
CLS or CCLS - Certified’ Child Life Specialist
CMN - Children’s Miracle Network
CMS (Federal) - Centers for Medicare and Medicaid
CMS (State) - Children’s Medical Services
CP - Cerebral Palsy
CPR - Cardio-Pulmonary Resuscitation
CPS - Children’s Protective Services
CSHCN - Children with Special Health Care Needs
CSN - Children with Special Needs (with a developmental delay/disability)
CWW - Child Welfare Worker
DD - Developmental Delay/Disability
DD - Developmental Delay
DHCS - Department of Health Care Services
Disenrollment - Generally used when removing a child from managed care insurance
Disenrollment - Disenrollment
DME - Durable Medical Equipment
DNR - Do Not Resuscitate
Dx - Diagnosis
EFRC - Exceptional Family Resource Center
EPSDT - Early, Periodic Screening and Diagnosis and Treatment
ESRD - End-Stage Renal Disease
ET  - tube Endotracheal Tube
F/S  -  Full Scope Medi-Cal - has full Medi-Cal coverage - no shared cost
FE - Financially Eligible
FT - Full Term
FTT - Failure to Thrive
FX - Fracture
GI - Gastro-Intestinal
GJ - Gastrostomy-jejunostomy tube
GMCH - George Mark Children’s House
GR - Gravida (# of pregnancies)
GSW - Gun Shot Wound
GT - Gastrostomy Tube
GT - Gastronomy Tube
GU - Genitourinary
HCBS Home and Community-Based Services
Hem/Onc - Hematology/Oncology
HHA-  Home Health Agency
HHA - Home Health Aide
HIV - Human Immunodeficiency Virus
ID - Infectious Diseases
ID  - Identification
IDT or IDG - Interdisciplinary Team or Interdisciplinary Group
IEP - Individual Education Plan
IHO - In-Home Operations for Shift Nursing (Medi-Cal)
IHO - In-Home Operations (for Shift Nursing) (Medi-Cal)
IHSS In-home Support Services
IP  - Inpatient
IPPC Initiative for Pediatric Palliative Care
IUGR Intrauterine Growth Retardation
JT Jejunostomy Tube
LCSW Licensed Clinical Social Worker
LCSW Licensed Counselor Social Worker
LEA Local Education Agency
LGA Large for Gestational Age
LLCH Children’s Hospital & Research Center at Oakland
LPCH Lucile Packard Children’s Hospital (at Stanford)
LPCH Loma Linda University Children’s Hospital
MCH Lucile Packard Children’s Hospital at Stanford
MD Doctor of Medicine
MD Muscular Dystrophy
MFT Marriage and Family Therapist
Mic-Key A type of gastrostomy tube
Mic-Key A type adaptor for a gastronomy or jejeunostomy tube
Mic-Key button A type of Mic-Key gastrostomy tube
Miller’s Miller Children’s Hospital
MS Multiple Sclerosis
MSW Medical Social Worker
MTP Medical Therapy Program (provided by CCS)
MTP Medical Therapy Program (for CCS)
MTU Medical Therapy Unit where CCS MTP services are provided
MTU Medical Therapy Unit (within CCS MTP)
N/T Non Tender
N/V Nausea and Vomiting
NC Nasal Cannula
NCM Nurse Case Manager
NCM Nurse Care Manager
NCRO Northern California Regional Office (CCS)
NCRO No. California Regional Office
NG Nasogastric
NHPCO National Hospice and Palliative Care Organization
NICU Neonatal Intensive Care Unit
NJ Nasojejeunum
NKA No Known Allergies
NL Numbered Letter - CCS policy interpretation documents for county CCS and providers
NL Numbered Letter
NMC Natividad Medical Center
NOA Notice of Action (CCS) - usually a denial
NOA Notice of Action (CCS)
NOS Not Otherwise Specified
NP Nurse Practitioner
NPO Nothing By Mouth
O2 Oxygen
OD Overdose
OD Right Eye
OP Outpatient
ORIF Open Reduction Internal Fixation
OS Left Eye
OT Occupational Therapy / Occupational Therapist
OU Both Eyes
Para # of Children
Para. Paraplegic
pc After
PC Pastoral Care
PC Palliative Care
PC Personal Computer
PCP Primary Care Provider
PDA Patent Ductus Arteriosus
PED Program End Date
PFC Partners for Children - California’s Waiver Program
PFC Partnership for Children
PFP Partnership for Parents
PHN Public Health Nurse
PPC Pediatric Palliative Care
Premie Premature Infant
PSA Program Services Agreement
PT Physical Therapy / Physical Therapist
Q “x” “time” Every specific time frame noted, i.e. Q6hr is Every 6 Hours
QD Every Day
QID Four Time a Day
Quad. Quadriplegic
Rady Rady Children’s Hospital - San Diego
RBC Red Blood Cell or Count
REQ Request
RN Registered Nurse
ROP Retinopathy of Prematurity
RX Prescription
SAB Spontaneous Abortion (miscarriage)
SAR Service Authorization Request
SARC San Andreas Regional Center
SCRO Southern California Regional Office (CCS)
SELPA Special Education Local Plan Area
SGA Small for Gestational Age
SSC Special Care Center (for CCS)
SSI Supplemental Security Income (through Social Security)
Surg. Surgery
Sutter Children’s Center at Sutter Medical Center, Sacramento
SVMH Salinas Valley Memorial Hospital
SW Social Worker
TBI Traumatic Brain Injury
TCC Tertiary Care Center
TCDB Turn, Cough, Deep Breathe
TID Three Times a Day
TL Tubal Ligation
TOF Tetralogy of Fallot
TPN Total Parenteral Nutrition
TPR, B/P Temperature, Pulse, Respirations, Blood Pressure
Trach. Cath. A catheter used to suction the trachea when a tracheotomoy is in place
Trach. Cath. Tracheal Catheter, Used to suction the trachea when a tracheotomoy is in place
TX Treatment
TX Traction
UCD University of California, Davis Children’s Hospital
UCI University Children’s Hospital at University of California Irvine
UCLA Mattel Children’s Hospital at UCLA
UCSD University of California, San Diego Children’s Hospital
UCSF University of California, San Francisco
UCSF University of California, San Francisco Children’s Hospital
URI Upper Respiratory Infection
Urine Cath. A catheterused to collect urine directly from the bladder
Urine Cath. Urine Catheter, Used to collect urine directly from the bladder
UTI Urinary Tract Infection
Vent Dep. Ventilator-Dependent
Vital Signs Temperature, Pulse, Respirations, Blood Pressure & Pain Level
W/C Wheelchair
WBC White Blood Cell or Count
WNL Withing Normal Limits
WT Weight

Children’s Hospice and Palliative Care Coalition, with funding from the California Healthcare Foundation, presents Benefit Education and Strategic Training in Pediatrics or BEST in Pediatrics, an initiative designed to ensure maximum utilization of California’s new Pediatric Palliative Care Benefit, therefore, dramatically increasing access to hospice and palliative care for more than 16,000 critically ill children and their families in the state.

For background on this issue, click here to watch a video narrated by Board President, Melissa Gilbert.

The comprehensive Pediatric Palliative Care Benefit, drafted by California’s Department of Health Care Services, Children’s Medical Services Branch in collaboration with Children’s Hospice and Palliative Care Coalition contains two primary policy components:

(1) a federal hospice eligibility waiver, which will waive hospice eligibility requirements for children and add additional pediatric specific services not currently available under the state plan, and

(2) a series of California Children’s Services Palliative Care Numbered Letters, which define principles of palliative care and guide authorization and payment for existing state plan services.

Learn More
Contact: Gay Walker, RN
Lori Butterworth and Devon Dabbs
Join a Regional Collaborative

Education Partners
End of Life Nursing Education Consortium (ELNEC)
Initiative for Pediatric Palliative Care (IPPC)
Children’s Project on Palliative/Hospice Services (ChIPPS)

In keeping with CHPCC’s mission to improve heath care for critically ill children by addressing systematic barriers, BEST in Pediatrics will prepare families, health care providers and work with California Children’s Services to implement and utilize the new Benefit. The program will target regional waiver pilot sites and will accomplish the following:

Evaluate provider preparedness and capacity for engagement;
Clarify for clinicians, stakeholders, and families the distinction between and proper utilization of the two primary components of the new Pediatric Palliative Care Benefit;
Address the sensitive and complex subject matter of the Benefit through on-site training;
Promote mutual education and communication among waiver pilot site providers;
Facilitate pediatric palliative care training for health providers to enable them to overcome stigma and fear associated with caring for children; and
Establish and promote a professional peer-to-peer mentoring program for professionals providing pediatric palliative care.

BEST in Pediatrics will develop the capacity of waiver pilot site personnel as pediatric palliative clinicians, advisors, advocates, and leaders in their respective health care communities. The program will also ensure that waiver pilot site personnel have the tools they need to communicate effectively with each other across all clinical and administrative settings, resulting in a continuum of care and more effective, appropriate and attentive treatment for children with life-threatening conditions and their families. Finally, BEST in Pediatrics will continue to create a broader awareness about the need for integrated family-centered pediatric palliative care among California clinicians and community-based stakeholders who are in a position to provide timely and appropriate referrals to families for hospice and palliative care from throughout the state. This project is critical to ensuring the success of the Benefit because DHCS’s standard program implementation policies and procedures will not address essential subject matter covered by the program. CHPCC expects that BEST in Pediatrics will have a significant and lasting impact in California on the availability and utilization of pediatric palliative care services for children with life-threatening conditions.

Improving Care for Children with Serious Illnesses

Fact: Children with serious illnesses suffer from a broken and inefficient healthcare system.

Fact: Most children living with life-threatening conditions who need hospice and palliative care support do not get it, resulting in avoidable and unnecessary pain and suffering.

Fact: The federal hospice eligibility regulations do not work when applied to children.  It is inhumane to ask a parent to give up on curing their child’s disease or prolonging their life in order to get the pain management and family support offered by hospice and palliative care teams.

Fact: The Children’s Hospice and Palliative Care Coalition, an inspired group of parents, clinicians, institutions, policy makers and concerned citizens from throughout California, have gathered together on behalf of those too little or too sick to speak for themselves, creating a new comprehensive hospice and palliative care benefit for children with life-threatening conditions.

The benefit has two important components:

1. State- Plan Palliative Care Services described in the California Children’s Services (CCS) numbered letter.  These services are now available in all California counties.
2. Federal Hospice Eligibility Waiver – waives hospice eligibility for children and adds additional services to the already existing State-Plan Palliative Care services described in the numbered letter.  Availability of waiver services will roll out over a three-year period in the following counties:

2009 in Santa Cruz, Monterey, San Diego, Alameda and Santa Clara.
2010, six additional counties will be added: Humboldt, Marin, Orange, Sacramento, San Francisco and Sonoma
In 2011, Fresno County and Los Angeles County will be added.
Goal:  State-wide after three-year pilot period.

Background:

Children’s Hospice and Palliative Care Coalition was founded in response to a healthcare crisis for children living with life-threatening conditions.  Because the federal hospice eligibility requirements were designed to meet the needs of adult patients, children were left without adequate pain management and their families did not have support from a healthcare team while caring for their children at home.

When applied to children, the hospice eligibility rules don’t work – no parent should have to 1) Accept or agree with their child’s doctor that their child will likely die within six months or 2) give up treatment intended to cure the child’s disease or prolong their child’s life.  We at CHPCC believe that it is inhumane to ask a parent to make that choice in order to access the expert pain management and family support offered by hospice or palliative care teams.

In 2001, Children’s Hospice and Palliative Care Coalition began working with California Children’s Services (CCS) and the California State Department of Health Care Services (DHCS) to open access to hospice and palliative care services specific for children.  After a great deal of time, energy and research, we have collaborated with DHCS to create a two-part comprehensive pediatric palliative care benefit for children:  CCS Numbered Letter and Hospice Eligibility Waiver.

CCS Numbered Letter:

We discovered that there were already many palliative care services available to children through the California Children’s Services program.  However, these services were difficult to find and authorize because they were not classified nor were they organized as “palliative care.” In order to ensure that all children with life-threatening conditions had access to these services, CCS issued the  “Pediatric Palliative Care Numbered Letter.”  This numbered letter and list of services and codes confirmed the need for these services by defining them as palliative.  It did not, however, address access to hospice teams.

In 2005, it was agreed that in order to truly open access to children needing hospice and palliative care services, hospice providers must be allowed to provide care to children without the limitations of the federal requirements for eligibility.  A waiver of those regulations was deemed necessary to compliment the palliative care services already available through the state plan (numbered letter).

Hospice Eligibility Waiver

What is the waiver?
The waiver is a MediCal CCS demonstration project that will enable children with life-limiting illnesses to receive curative treatment as well as home-based palliative care services similar to those that are provided by hospice agencies. The program will be open to children who meet medical diagnosis criteria and have MediCal coverage. It is anticipated that Alameda, Santa Cruz, Monterey, Santa Clara and San Diego Counties will be able to begin enrolling children in January of 2009. In 2010, six additional counties will be added: Humboldt, Marin, Orange, Sacramento, San Francisco and Sonoma.  In 2011, Fresno County and Los Angeles County will be added.  Goal:  State-wide after three-year pilot period.

Why palliative care?

Palliative care aims to enhance quality of life and minimize suffering through interdisciplinary services and interventions. Ideally, this care is provided by the same care team from the time of diagnosis onward. Patients who receive palliative care often experience increased continuity of care, less crises, and a decrease in both hospital admissions and length of hospital stays.

Why the waiver?

Currently, home-based palliative care is only accessible by most pediatric patients through the hospice benefit. The requirements of the current hospice benefit present significant obstacles that prevent many families and children from receiving palliative care. The waiver will be an opportunity for provision of in-home palliative services to children who are still receiving curative or disease-modifying therapies from a traditional pediatric healthcare provider.

How do I refer a patient?

Any physician can refer a patient for the waiver. The referral will be given to a CCS Nurse Liaison (CCSNL) who will help to determine if the child is eligible to receive waiver services. The CCSNL will then refer appropriate patients to the Care Coordinator who will be based at the community-based hospice or home-health agency.

What services might the patient receive?

The patient will be assigned to a Care Coordinator who will do an in-home palliative care assessment. The coordinator will assess the patient’s and family’s goals of care.  With input from the child’s health care team the care coordinator will create a family centered action plan which will be shared with both CCS and the child’s entire health care team. The waiver WILL NOT change any of the services that the patient is receiving at the time of referral and will provide additional services which may include respite care, expressive therapies (art, music), family training and bereavement services.

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