Don’t Miss the Most Miraculous Event of the Year

Then go to our Facebook page and TAG the photo with your name!!!

Here’s how you can enjoy this miracle:

1. Click the “buy now” button below or the donate now button above and purchase balloon(s) for yourself, your loved ones or in honor of a child. Suggested donation: $20 per balloon
2. Go to: http://www.facebook.com/childrenshospice and open the balloon photo - tag a balloon with the names of your balloon honorees. Be sure to write a message on the message stream below the picture.
3. Join the celebration at 4:00 pm. September 5, 200 block of Union Street downtown Santa Cruz, music, games, and the lifting of Michael Bethke’s house!!

On September 5 Michael and his company, Slatter Construction Company (www.slattcon.com) who certainly know how to lift houses, will raise hopes for children with life-threatening conditions, by raising his house. The project is an innovative “out of the box” fund/fun raising idea and we are honored that Michael and his wife are willing to take what was to be a regular lift to install a new foundation and turn it into magic for children.

We would like to invite you to partner with us on what will be a day full of fun, joy and wonder for children with life-threatening conditions and their families.

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.

 Agenda for Teleconference November 7, 2008 12-1 

Please put your phone on mute unless you are speaking and please give your name and agency when you have a question or comment. 

1.  Introduction and Background (1/2 Minutes) Devon and Lori 
2.  Review of Q and A from the State - listed below (30 minutes) Christy 

• care coordination 
• billing

3. Discussion (25 minutes) all 
4. Next Steps (5 minutes) all 

Questions to re Billing Under Waiver

1. Can the Care Coordinator also provide nursing/social work services (any other non-waiver service on the CCP) as an interdisciplinary team member or do they have to be a separate person?  Concern that this will be very costly to providers and hard to plan.  (#11 related)
We will allow the Care Coordinator to perform other services (from the treatment plan) for the patient, regardless of whether they are waiver services or not. 

2. Does the Care Coordinator do assessment for entire team and then assign services to the team or will each discipline do assessment like the hospice model?
They need to do an assessment of the whole child.  We have not specified a ‘team’ structure for the waiver.  Waiver doesn’t require the provider to have a team in place to bill for.  The CC will need to work with a wide variety of people (SCC, CCS, family, PCP, community etc.) in order to coordinate all of the child’s services and care. 

3. How will in-home nursing be authorized?  (non-respite nursing)
Shift nursing in home is authorized by county as EPSDT to enrolled Medi-Cal HHA and independent nurse providers.  In home respite nursing is a waiver service and can be provided by an approved waiver provider.

4. Should children be disenrolled from managed care under the waiver?
No reason for disenrollment from managed care plans… all CCS Medi-Cal children residing in counties where the waiver will be operating will be potentially eligible for the waiver.  And services will be provided on a fee-for-service basis.

5. Will paneled Primary Care Providers (PCPs) be paid when authorized in this waiver?
They provide state plan not waiver services and will get a CCS authorization for their services.

6. When a nursing agency contracts with a DME provider, they are paid a flat per diem rate. How will we work with DME vendors? Go out of the nursing agency contracted circle and pay fee for services? Work with a different vendor who will accept fee for service?
The waiver provider is not responsible for the provision of DME.  these are state plan services and are authorized by CCS and reimbursed by Medi-Cal.

7. Nursing agencies work with certain pharmacies who can provide compounded and unusual dosage drugs to pediatric patients. What can we do to ensure that they get paid? Fee for service?
Unrelated to the waiver

8. Will nursing agencies need to obtain another NPI for the waiver services?
HHA’s do not need to obtain another NPI for waiver services…

9. How will the State’s budget cuts affect the provision of waiver services?
There are no anticipated cuts to waiver services in the budget at this time, beyond the cuts put in place July 

10. (See Appendix B-6, page 40 of the numbered letter)
What is this referring to?

11. IDT Meeting – Who gets paid for time? Will there be a separate billing code? (#1 related)
Under the waiver, the Care Coordinator can bill for their time. 

12. Does the Medical Director of a pilot agency have to be CCS-paneled in order to authorize changes to a plan of care? If the Medical Director is not a pediatrician, how do they become CCS-paneled?
Unclear what you are asking… waiver care plan vs. Agency treatment plan?  If a physician is not paneled, they can fill out an application (found online) http://www.dhcs.ca.gov/formsandpubs/forms/Forms/ChildMedSvcForms/dhcs4514.pdf 

13. Can a hospice provide nursing services under the numbered letter?
Intermittent nursing in the home is provided by HHA.  Shift nursing in home is provided by HHAs and independent RNs.  These are state plan services.

14. Will a hospice have to outsource the nursing services to a licensed home health agency?
Yes, or become a licensed HHA to provide non waiver state plan nursing services.   Approved waiver providers including hospice agencies can provide waiver nursing services (see chart at bottom).  

15. What about existing services that are not yet coded?
We are in the process of coding waiver services, please clarify your question.  

16. Do I have to be within a pilot county to bill under the numbered letter?
No. Non-pilot counties may also bill under the Numbered Letter.  
State plan services as defined in the numbered letter are open to children living in all counties.  Waiver services are limited to residents of a pilot county.

17. Under the waiver, will a newly-diagnosed child enter the system as a “hospice” patient?
A newly diagnosed child, who is Medi-Cal full scope no SOC and has a CCS eligible condition, will enter the system if the medical condition meets waiver eligibility.  They will not need to enroll in the Medi-Cal hospice program to get these services. 

18. What clearances do I need to bill for medication or DME?
These are not waiver services; they are authorized by CCS and billed by the pharmacy or DME dealer as state plan benefits.

19. Is a waiver provider responsible for receiving all bills for services and waiting to be reimbursed?
The waiver provider is responsible for billing for waiver services that they provide or for which they contract.  

20. How will CCS know about residency requirements? What if a child moves?
Please clarify what information you are looking for.

21. Are chaplaincy services covered under the waiver?
Chaplaincy services are not included in the waiver

22. How are on-call services reimbursed? On a continuous 24-hour basis or strictly when used?
The only on-call services provided through the waiver is included in the responsibilities of the Care Coordinator.  See definition of Care Coordinator codes.  

23. Can a chaplain provide expressive therapy? (art/music/play, etc.)
A chaplain can only provide billable expressive therapy if he/she possesses the proper credentials (MFT, SW, etc.)  

24. The services provided under the waiver stress a continuum of care that extends through bereavement after the child dies; however, the records for a child close at death. How will bereavement services be provided and tracked if the records are closed?
Under the waiver, bereavement services will be available for up a year after death.

25. When will waiver reimbursement rates be established?
We are in the process of developing the reimbursement methodology for waiver services.

26. Our agency knows about the turn-around time that usually accompanies reimbursement; however, we are particularly concerned about excessive reimbursement waiting periods for services, medication, or equipment that is needed immediately. Are there any plans for expediting the payment process?
There is currently no plan in place to expedite the reimbursement process.

27. For services that have a set number of hours or days in a given period (i.e. “30 days of respite per year), will those dates revolve around a plan year, calendar year, or enrollment year?
Those services will be based on a waiver enrollment year.

28. Currently, nursing codes exist that are specific to particular agency types, such as home health agencies. Will the waiver develop a nursing code that is specific for hospices?
See # 14 answer.  

29. Who must provide a social work visit in order for the visit to be billable?
Social work visits must be made by an MSW in order to be billed.

30. How is the reporting of the provision of waiver services done?

1. a. Form 392 will be filed with the State by waiver providers and agencies. The State will then gather the data for reporting to Federal CMS.

Please clarify what you are asking…

31. Our agency currently has two provider numbers; one for _________ and the other for ________. Will we require a third provider number for waiver services?

You need to be an active Medi-Cal provider with a currently registered NPI for your agency. 

32. What are the documentation requirements for billing

Documentation must be retained for future review, but it will not have to accompany claims

33. When is the waiver scheduled to take effect

Pending the result of the federal review in progress, the waiver is expected to take effect January 10, 2009.

34. As a hospice with a hospice license only, are we licensed to bill fees for service?

If you have a Medi-Cal provider number, you may bill waiver services.

35. When is our agency responsible for billing?

An agency must bill for the services for the staff and sub-contractors who are not Medi-Cal providers.

36. Where and how are home/hospice visits recorded?

Unclear as to the meaning of this question, does it relate to something other than the required documentation of medical services that you maintain?

37. How can out-of-home respite providers bill for services?

Out of home respite providers, with an active Medi-Cal provider number, can bill the Medi-Cal program after getting approval from the care coordinator and authorization from the CCSNL.

38. Why were the pilot counties chosen over other counties?

The pilot counties were chosen based on county CCS program interest and availability of potential waiver providers.

39. Will the rates for the various kinds of expressive therapies be varied?

There will be the same rate applicable to each of the expressive therapies.

40. Is there any system of material reimbursement for expressive therapies (i.e. art supplies, CDs, instruments, etc.)

There is currently no system in place for material reimbursement for expressive therapy.

41. Is transportation to/from a child’s tertiary care center covered under the waiver?

Transportation is not covered by the waiver.  Medical transportation is a state plan benefit.  Refer to the numbered letter (N.L. 01-0104)

42. Will there be a Southern California wage index adjustment for billed hour reimbursement as MediCal does for other programs?

No 

43. It appears that the care coordinator’s salary will be paid by the State. Will our hospice bill per visit, or will our hospice be reimbursed for a 40 hour per week salary?

No, the salary will not be reimbursed.  The Care Coordinator’s services will be reimbursed from the HHA or Hospice billing Medi-Cal using appropriate waiver codes.

44. There is a minimum of four hours per week for care coordination. Is there a maximum?

We will be providing clarification as the waiver is finalized.

45. How many care coordination hours are included in the startup rate?

We will be providing clarification as the waiver is finalized.

46. What is the difference between a monthly maintenance rate versus a supplemental hourly rate? Are there limits on either of them?

The monthly rate will cover a specified range of hours.  The supplemental hourly rate will cover hours that exceed the monthly maintenance.  We will be providing clarification as the waiver is finalized.

47. Will there be a cap, per patient or aggregately, on billing by the care coordinator?

There will be a cap on the hourly rate and the number of hours per month per patient. 

48. Are additional hours above the number of hours for start-up and monthly maintenance billed as supplemental hourly

Yes 

49. What is included within admin?

Case Management Admin is no longer a covered waiver service/code

50. What documentation will be required for billing care coordination hours?

See #32 answer.  We will provide specific direction on documentation that must be maintained by each waiver provider.   

51. Will the documentation be discipline-specific?

We will provide specific direction on documentation that must be maintained by each waiver provider.   

52. Will the waiver employ a fee-for-service billing structure? If so, codes will be needed for care coordination start-up, monthly maintenance, and supplemental.

Yes, we will be providing you with the specific codes and the reimbursement rates.

53. Who specifically does an agency bill for services?

The Department’s Fiscal Intermediary, currently EDS.

54. Will our agency bill at the current hospice rate, a flat Medi-Cal rate per visit, or at the CCS MediCal rate?

The agency will bill the specific waiver codes for waiver services and be reimbursed at the Medi-Cal rate.

55. Will there be a system for billing electronically?

Yes 

56. Will new codes be created? Computerized billing systems will need to have these new codes entered into their systems with fee schedules, so there would be a for some lead time.

Yes, we will be providing you with the specific codes and the reimbursement rates.

57. Will physician home visits be reimbursed using the waiver fee schedule or traditional MediCal FFS?

These are state plan services and will be payable through CCS authorization of physician care. 

58. Who is specified as an interdisciplinary team, and what disciplines are included in that distinction?

We will be providing clarification as the waiver is finalized.

59. Will our hospice be providing care coordination and contracting out nursing visits, or will our hospice also be providing skilled nursing visits? Or some combination thereof?

The hospice (waiver provider) will be providing care coordination including the coordination of nursing services either intermittent skilled nursing visits or shift nursing in the home. 

60. Will patients on the waiver ever elect their hospice benefit, or will they continue as a waiver recipient through the end of life?

It is possible that families would elect hospice as part of the continuum of care.

61. Will there be any type of IDG or team meetings, including CCS, to discuss the points on an ongoing basis?

Yes.  We will be providing clarification as the waiver is finalized.

62. How is “respite” defined under the waiver?

Respite care must be identified by the participant, parent/and or legal guardian, Care Coordinator, documented in the CCP, and prior authorized.  Respite Care includes appropriate care and supervision to protect the participant’s safety in the absence of family members. Respite care should not be confused with regular shift nursing or intermittent visits which are not limited to 30 days per year, the parent or caregiver are expected to be present for this service, and the care is to provide medical care not relief for the parent.

Respite care is defined as:
• A parent-oriented service where care is provided to the waiver participant for the purpose of providing an interval of rest, relief, or absence for family members from the constantly demanding responsibility of caring for a child with serious complex medical condition; 
• Assist the family in maintaining the waiver participant at home; 
• care provided in the participant’s home or out of home; 
• care which meets the individual participant’s medical needs and ADL’s which would ordinarily be performed by family members or primary caregiver; 
• care may require different provider skill levels to meet the individual needs of the participant ( example, RN & CNA; or LVN & CNA with RN supervision); 
• care which may be short term,  intermittent or regularly scheduled; and 
• limited to 30 days per year (Combined home and out of home respite care); 
o 96 units per day; 1 unit = 15 minutes; 4 units = 1 hour ( this may not be appropriate at this time) 
o 2880 units per year = 30 days. 

The following providers may provide respite care in the home:
• Relatives who are qualified RN or LVN 
• RN 
• LVN 
• HHA 
o RN 
o LVN 
o CNA with supervision 
• Hospice Agency 

The following facility may provide out of home respite:
      —Congregate Living Health Facility

63. Will children receiving shift care through hospice be eligible for the palliative care waiver as well?

Shift nursing services are a state plan benefit (for individuals under age 21) and are provided either by independent nurse providers or home health agencies.  Shift nursing services are not currently provided under the Medi-Cal hospice benefit. The family must either choose the waiver or the hospice benefit.

64. Are all the services outlined in the plan of care (social work, spiritual care, etc.) billable? And if so, under what category (bereavement, etc.)?

Please clarify your question…

65. Will MSW services be billed under the current CCS codes (if yes, under the HHA service code Z6910 or under the EPSDT service code z5816)?

It depends on the service provided by the MSW and whether the MSW is an HHA employee or an individual practitioner enrolled as an EPSDT Medi-Cal provider.

66. Under what code can chaplaincy services or spiritual counseling be billed? Will it be billed in 15-minute increments, hourly, or per visit?

It will not be payable.  

67. The current benefit includes 30 days of respite. Is the benefit equal to 30 dates, or (30 x 24 hours)? For example, if a family receives 8 hours of respite, have they used up one full day, or are the other 16 hours still available?

The 16 hours will still be available.  We will be providing clarification as the waiver is finalized.

68. If a waiver provider used a non-waiver provider to do a visit, could the non-waiver provider bill CCS directly, or would it need to go through the waiver provider?

Please clarify your question…

69. Do children need to be on a home ventilator to qualify for the waiver?  

Please refer to the description of medical eligibility for the waiver (Appendix B-1:b).  

70. If a child is receiving intermittent BiPAP, will that be sufficient to qualify for the waiver? 

Please refer to the description of medical eligibility for the waiver (Appendix B-1:b).  

71. Our hospice is not a special care center. Do we need any specific designation by CCS to bill under the waiver?

No specific designation but the hospice must be an enrolled Medi-Cal provider.

72. Can our hospice contract to provide in-home respite only?

Please clarify your question…

73. Will the State increase the reimbursement rates to meet the UC rates of the facility?

No 

74. Will the State be willing to modify the respite criteria from CHLF to Skilled Nursing Criteria and pay at the pre-established Medi-Cal rate of $29.41 per hour?

Skilled Nursing Facilities, that are enrolled as Medi-Cal providers, could be authorized to provide respite if the child meets SNF level of care.  These are state plan services not waiver services and are paid at the current Medi-Cal rate for the facility.  

75.  Do I need to be a CCS paneled physician to bill for Physician services that I provide to waiver patients?
yes, here is the link to the application. 
http://www.dhcs.ca.gov/formsandpubs/forms/Forms/ChildMedSvcForms/dhcs4514.pdf
76.  San Diego Hospice is not a special care center.  Does San Diego Hospice need any specific designation by CCS to bill under the waiver?
There is no need for a specific designation by CCS.  The hospice needs an active Medi-Cal provider number to bill for services under the waiver.

77.  Can the existing state plan billing codes for home health be utilized by hospice? If not, can they be amended to apply to hospice? If not, will new billing codes for hospice providers be developed when the new codes are created for the additional waiver services?  How long does this process take?
No, they will not be amended to apply to hospices.  The waiver codes can be reimbursed to a hospice agency.  We will be providing clarification as the waiver is finalized.

Questions from Alameda County

1. 78. Shift nursing through In Home Operations Medi-Cal Waiver- how will these be authorized by CCS?

Shift nursing is available as needed for CCS children as a state benefit, it is NOT a waiver service Please refer to Numbered Letter 05-0207 “Short-Term Nursing Services” for authorization of this non- waiver (State Plan benefits) service.  In addition, CCS & In-Home Operations (IHO) have a “Work Around” process in place when a CCS child is enrolled in a Medi-Cal Managed Care Plan that is carved-out;  IHO receives the request from the HHA or INP for the nursing services, and IHO makes the determination, communicates with CCS and CCS authorizes on behalf of IHO.

1. 79. Child Life Services- Will these be available only to the patient or also siblings? In home or only in a facility?

CCLS can provide expressive therapies in the home. Do they need to be individual MediCal providers or can the agency bill for these services under expressive arts? Expressive therapies can be provided as a waiver service if the need is documented in the CCP. The therapists will be contracted by the hospice/HHA where  the care coordinator is. The objective of the waiver will be to minimize the use of institutions, especially hospitals, and improve the quality of life for the participant and Family Unit (siblings, parent/legal guardian, and significan others).

1. 80. Bereavement Services- We know the 12 month anniversary is very hard. Will it be authorized beyond that? Not for the demonstration pilot to start. 

1. 81. Expressive Therapies- Available in the home?

YES, this is a home and community based waiver - offering the services in the home are what is hoped with keep kids out of the hospital or institution (provided by HHA/hospice with providers credentialed by them and meeting the criteria described in the waiver.

1. 82. Psychological or Psychosocial Services- To patient and to the family?  

Yes
The waiver provides for care coordination,  respite care, family training, expressive therapies and bereavement services. Mental health services per se are not a part of the waiver except as they fit into the above services. In addition to “Waiver Services” comprehensive care coordination include State plan services, EPSDT and community services.  The “comprehensive care plan is the integration of waiver, State plan and community resources.

1. 83. Spiritual Care (chaplain) Services- Very important piece of the care. Will they be authorized?

No, chaplains are not under the waiver.  However if they happen to be an MFT/LCSW  for example then they could be under that licensure.  Two goals for Care Coordination in the home setting are the following: Patient-focused, family centered, holistic health care that incorporated the physical, emotion, social and SPRITAL needs of the child and family to enhance their capacity to cope with a life threatening condition and Preserve the integrity of the family during the condition progression, addressing anticipatory grief and bereavement support following the death.

1. 84. Respite Care- How will this be authorized? Is there a way to authorize George Mark Children’s House?

Respite is a waiver services and GMCH as a congregate living facility is available for respite

1. 85. For Per Diem Services billed as a lump sum to the home health agency, how will CCS authorize these?

All billing must be fee for service

1. 86. When will we have codes and definitions to identify these services and other PPC or Hospice services?

This is currently being developed and will be disseminated as soon as it is ready; 

1. 87. The pilot will be for full-scope Medi-Cal recipients. Will this include those with managed care plans?

Yes 
There were many questions and no answers at the last State phone conference held in Capitola on Aug 11th. Would you please direct me to the documents that answer any of the above? For other questions, it would be beneficial to have some guidelines by the time the PPC Pilot starts, although I realize there will still be questions and concerns that will come up during the pilot. I appreciate any information regarding this. Thank you, 

The coalition and state are working on information ‘fact’ sheets or FAQ’s to help answer questions and explain info about the waiver. With the BEST program there will also be REPs, a set of professionals within the State, who will be experts on the waiver and available to answer questions and help educate

A document with responses to the questions from 8//11 will be sent to Children’s Hospice and stakeholders within a week.

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

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.

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.