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Children’s Medical Services Network

Partners in Care: Together for Kids

2007-2008Year 2 Evaluation

Institute forCHILD HEALTH POLICYU N I V ERS I T Y O F F LO RI DA

Caprice Knapp, PhD

Assistant Research Scientist

Epidemiology and Health Policy Research

Institute for Child Health Policy

University of Florida

Vanessa Madden, BSc

Research Program Coordinator



I-Chan Huang, PhD

Assistant Professor



Elizabeth Shenkman, PhD

Director,


Professor



Prepared By

Table of ContentsExecutive Summary 1

Background and Purpose 5

Data Collection and Evaluation Methods 7

Enrollment Trends 9

Potential Enrollment List 12

Survey of CMSN Sites 14

Survey of Hospice Sites 21

Survey of New Site 30

Parent Surveys 31

Parent Surveys of Comparison Children 36

Cost Patterns 37

Summary and Recommendations 38

List of Figures

Figure 1 PIC:TFK Enrollment Trends, January 2006 to January 2008 9

Figure 2 Monthly Enrollment By Site, June 2007 and January 2008 10

Figure 3 Active Enrollment Trends, January 2006 to January 2008 10

Figure 4 Active Enrollment By Site, June 2007 and January 2008 10

Figure 5 Disenrollment Trends, January 2006 to January 2008 11

Figure 6 Percentage of Children in PIC:TFK: In School or Day Care, With Siblings & Gender 31

Figure 7 Number of Survey Respondents, By Site 31

Figure 8 Received a List or Were Told About PIC:TFK Services During Enrollment, By Site 32

Figure 9 Time Frame of Receipt of a PIC:TFK Service After Being Invited to Participate, By Site 32

Figure 10 Very Satisfied to Satisfied with PIC:TFK Benefits, By Site 33

Figure 11 Parent Report of Overall Quality of Care, By Site 33

Figure 12 Very Satisfied to Satisfied with PIC:TFK Nurse or Therapist, By Site 35

Figure 13 CAHPS Composite Scores 35

Figure 14 PedsQL Generic Composite Scores 35

List of Tables

Table 1 Enrollment from the May 2007 Potential List, By Site 12

Table 2 Enrollment from the October 2007 Potential List, By Site 12

Table 3 Cumulative Potential List Progress by January 2008, By Site 13

Table 4 Non Enrollment Reasons for Children on the Cumulative Potential List, By Site 13

Table 5 Ranking of Usefulness of PIC:TFK Protocols, By CMSN Office 16

Table 6 Ranking of Usefulness of PIC:TFK Protocols, By Hospice Site 23

Table 7 Available PIC:TFK Services 27

Table 8 How Respondents Learned about the Program, By Site 32

Table 9 Percentage of Parents who Report their Children Have Received a Service, By Site 32

Table 10 Number of Services that Parents Report their Family Members Have Received, By Site 33

Table 11 Cost by Service Type, January 2006 to December 2006 38

Table 12 Average Yearly Costs Pre and Post Implementation by Service Category 38

Family Satisfaction Report | 2007 - 2008

pg 1

Background and PurPose

In July 2005, Florida’s Partners in Care: Together for Kids (PIC:TFK) program for children with life-limiting illnesses began1. Prior to the establishment of the PIC:TFK program, children with life-limiting illnesses received hospice care under the Medicare model. Designed for the elderly, the Medicare model of hospice care requires a patient to be in the last six months of life to receive hospice services and the patient must forego any curative treatments. Because the life span of a child with a life-limiting illness is difficult to predict and the specific factors associated with childhood illnesses may require treatment up to the time of death, the Medicare model of hospice care is inappropriate for a pediatric population. PIC:TFK is the first publicly-financed health program for children in the nation to utilize a pediatric palliative care model which integrates palliative with curative or life-prolonging therapies.

PIC:TFK is operated under the authority of the Children’s Medical Services Network (CMSN). The CMSN is Florida’s Title V program for Children with Special Health Care Needs (CSHCN). Children must be clinically and financially eligible for the CMSN to enroll in PIC:TFK. Children enrolled in the program represent one of the three stages of illness: 1) newly diagnosed with a life-limiting condition, 2) mid-stage of their illness, which means that active treatment with life-prolonging or potentially curative treatments is provided, 3) end-stage where treatment options have failed. The goal is to have children approximately, equally distributed

across these illness stages at each site. The stage of illness might change as children remain enrolled in the program. Formally, PIC:TFK operates in eight sites across the state: Pensacola, Jacksonville, St. Petersburg, Sarasota2, Ft. Lauderdale3, Ft. Myers, West Palm Beach, and Miami.

The following are included as program services:

• Art, music, and play therapies,

• Pain and symptom consultation,

• In home nursing,

• In home personal care,

• Respite care,

• Counseling, and

• Bereavement counseling.

The federal Centers for Medicare and Medicaid Services (CMS) approved the PIC:TFK program as a 1915(b) Medicaid waiver program in 2005. As a result, the State was charged under federal guidelines with conducting an Independent Assessment (IA) of the PIC:TFK program. The Institute for Child Health Policy at the University of Florida (the Institute) is conducting the assessment.

The purposes of this report are to:

• Describe the characteristics of children enrolled in the program from June 2007 to January 2008,

• Describe the results from a hospice administrative survey,

• Describe the results from a CMSN administrative survey,

• Present the findings from site visits,

1 Executive Summary

At a Glance

The purposes of this report are to

describe:• Program

enrollment from June 2007 to January 2008• Adoption of the Institute’s

potential enrollee tool

• Results from a hospice

administrator survey

• Results from a CMSN administrator

survey• Site visit findings

• Results from a parent survey• Cost patterns

• Validation methods for

national survey instruments

pg 2

to identify and the survey a comparison group of children enrolled in CMSN, and the methodology that will be used to validate the use of several national, standardized survey instruments within this population.

data sources

Five data sources are used in this report. First, each PIC:TFK site submitted monthly enrollment data throughout the 2007-2008 fiscal year. Second, a hospice survey was administered and responses were collected by email about operational practices, standards of care, and procedures. Third, a CMSN survey was administered and responses were collected by email about enrollment and care planning procedures, training, and administrative support. Fourth, qualitative survey data were collected from CMSN and hospice personnel during scheduled site visits. Finally, parent survey data were collected via telephone. Survey data were collected for parents whose children are enrolled in PIC:TFK and parents whose children are in a comparison group.

key Findings

Key findings from this study were:

• As of January 2008, there have been 468 enrollees in the PIC:TFK program since its inception. This includes 298 current active enrollees and 170 children who have been disenrolled from the program. The 298 enrolled children accounts for 32% of the funded slots.

• Describe the results and experiences with the Institute’s potential enrollee tool,

• Describe the results from the parent satisfaction and quality of health care survey,

• Describe the cost patterns, and

• Describe the process used

At A Glance

Enrollment Trendsas of January 2008:

• Enrollment increased by 113% since January 2007

• 468 children enrolled since the

program’s inception

298 are active • enrollees

170 are • disenrollees

The primary • reason for

disenrollment is loss of PIC:TFK eligibility

1 | Executive Summary

• Enrollment and disenrollment rates have increased from January 2007 to January 2008 (113% and 154%, respectively).

• The top five reasons for disenrollment are (in descending order): family moved out of a PIC:TFK area (20%), family opted to discontinue services (15%), family no longer wanted services (15%), child lost CMSN coverage (11%), and child died (11%).

• Based on enrollment data, the potential list is a less successful strategy than anticipated, with a low return on investment of time to enrolled children. Although 4% of children were enrolled by this method, four sites report that upwards of 80% of children on their list are not eligible for enrollment. A detailed description of each site’s progress is included in this report.

• None of the PIC:TFK sites have 33% of their enrollees in the newly diagnosed phase.

• Hospice and CMSN partners report different operational challenges to the program. The primary concern facing CMSN is workload issues (high caseloads) and the primary concern facing hospice is reimbursement rates/service limitations, respectively.

• All sites report increased administrative support from CMSN headquarters.

• Hospices suggest that the training provided by the PIC:TFK Program Director be tailored to address the following: service provision as related to staffing, program sustainability as related to hospice financing of enrolled children, and service limitation.

pg 3

Partners in Care Together for Kids | 2007 - 2008

• New sites suggest the establishment of a mentorship program.

• Parent surveys reveal that about 86% of families are very satisfied with their PIC:TFK nurse or therapist and 83% are very satisfied to satisfied with the PIC:TFK program.

• Parents report that between 42% and 58% of children are receiving support counseling which is a major cornerstone of the program.

• Two-thirds of families report having received one or more PIC:TFK service(s) during the child’s enrollment

• PIC:TFK children have lower physical functioning skills (composite score of 41) than emotional, social, or school functioning scores (64, 52, 49, respectively) on a scale of 0 to 100. The children’s overall health-related quality of life scores are also low.

• Fifty-nine percent of PIC:TFK parents report symptoms of depression (composite scores greater or equal to 16).

• The average cost incurred by PIC:TFK children (includes 112 enrollees) for PIC:TFK services in 2006 was $514.

• Of the children who met the inclusion requirements for the cost study (includes 61 enrollees) that focuses on inpatient, outpatient, and total cost patterns, the results show a decrease in net costs of about $4,000.

recommendations

The Institute for Child Health Policy is making several recommendations for the PIC:TFK program. It is important to note that this is a complex and novel program in its third year of operation. Much has been accomplished as evidenced by the establishment of sites with multiple program partners (CMSN Area Offices, Medical Directors, the provider community, and the families), direction toward the standardization of program policies and procedures, and more than 80% of parental reports of satisfaction with the program (83%). However, due to the newness and the complexity of the program, there are several areas necessary for improvement and the ongoing success of this waiver program. The recommendations made should be viewed in the context that this is a new and novel program that is in its early phases of operation.

• The PIC:TFK Steering Committee should discuss diagnoses that CMSN and hospice do not feel are appropriate to meet enrollment criteria, and why.

• Given the large number of children that disenrolled from the PIC:TFK program, the CMSN should gather more information from the sites to understand why children are disenrolling for reasons such as program goals met or family no longer wants services. A site specific or statewide action plan should be initiated to address the disenrollment trend on an ongoing basis, with outcomes measures established and reported annually.

At a Glance

Survey Results • 83% of

families are very satisfied

to satisfied with the PIC:TFK

program

• Sites report increased support

from CMSN headquarters in

Year 2

• Hospice and CMSN

face different operational challenges

• The Steering Committee should consider discontinuing the potential list based on the return on investment of time to enroll children or revising the documentation requirements associated with the potential list. Policies and procedures related to the potential list should be standardized across all CMSN sites.

pg 4

• CMSN should discuss funding options with the sites. Even if it is beyond the scope of the program to raise hospice reimbursement rates or increase the CMSN full-time equivalent (FTE) allocation. CMSN should discuss with the sites strategies to help alleviate issues related to low reimbursement rates for the hospice and increasing workload issues for the CMSN staff.

• The CMSN should monitor which services are available at which sites. If a site fails to provide two or more services, a corrective action plan should be initiated by the Steering Committee and CMSN with a timeframe for follow up and re-evaluation.

• The Steering Committee should review and discuss the requirement that pediatric palliative care curricula, such as the End-of-Life Nursing Education Consortium (ELNEC), be required of the CMSN nurse care coordinators. Several of the CMSN sites did not feel that the ELNEC training module was appropriate since the nurse care coordinators are not providing the palliative care services and the training primarily focuses on adult patients with cancer. These sites suggest that the PIC:TFK program director or a hospice staff member provide more appropriate training to the CMSN nurse care coordinators.

• CMSN should discuss with the hospices what will occur when they reach a critical mass of enrollees and are unable to take on additional eligible enrollees.

• AHCA should clarify the reimbursement rules related to

inpatient respite as hospices are divided on whether or not they can use this service.

• The Steering Committee should recommend that AHCA revisit and address formally the possibility of adding bereavement services to the 1915(b) waiver, given that it is already a non-billable service, but is being tracked.

• Parent surveys reveal that fewer than 100% of families have been told about the program services. One-hundred percent of families who are determined to be eligible for the program and subsequently enroll in the program, should be provided with documentation listing the program services that are available to the enrollee.

• The parent survey should be revised to address separate and appropriate questions for new enrollees versus established enrollees.

• Currently, there exists wide variation in parent reported program satisfaction across sites. CMSN should investigate if there are site specific strategies that might address their specific needs and challenges, thus leading to the higher satisfaction results. The Steering Committee should review site specific barriers and strategies to improve parent reported satisfaction, and should propose an action plan accordingly by the end of the first quarter of FY 2008-2009.

At A Glance

1 | Executive Summary

Recommended topics for

the Steering Committee to

address:Enrollment • criteria

Disenrollment • trends

Discontinuance • of the potential list

Training • requirementsClarification of •

reimbursement rules related to

inpatient hospiceExpanding the •

scope of servicesSite specific •

barriers

pg 5


In July 2005, Florida’s Partners in Care: Together for Kids (PIC:TFK) program for children with life-limiting illnesses began4. Due to advances in technology and early screening, children with life-limiting conditions are living longer and often do not receive comprehensive health care to meet their physical and emotional needs. Prior to the establishment of the PIC:TFK program, children with life-limiting illnesses received hospice care under the Medicare model. Designed for the elderly, the Medicare model of hospice care requires a patient to be in the last six months of life to receive hospice services and the patient must forego any curative treatments. Because the life span of a child with a life-limiting illness is difficult to predict and the specific factors associated with childhood illnesses may require treatment up to the time of death, the Medicare model of hospice care is inappropriate for a pediatric population. PIC:TFK is the first

publicly-financed health program for children in the nation to utilize a pediatric palliative care model which integrates palliative with curative or life-prolonging therapies. PIC:TFK is based on the Children’s Hospice International Program for All-Inclusive Care for Children and their Families national model of pediatric palliative care which strives to provide a “continuum of care for children and families from the time that a child is diagnosed with a life-threatening condition, with hope for a cure, through the bereavement process, if cure is not attained”5.

PIC:TFK is operated under the authority of the Children’s Medical Services Network (CMSN). The CMSN is Florida’s Title V program for Children with Special Health Care Needs (CSHCN). Children must meet financial and medical screening criteria to be eligible for enrollment in CMSN and PIC:TFK. A further clinical eligibility requirement for PIC:TFK mandates that a child be diagnosed with a potentially life-limiting condition. Children must also meet the CMSN financial eligibility requirements associated with Title XIX Medicaid (for children under 21) or Title XXI Florida KidCare (for children under 19). The enrollment of Safety-Net eligible children in PIC:TFK (who have higher incomes than Title XIX or Title XXI) is optional and based on funding availability. Finally, children enrolled in the program must represent all stages of illness: 1) newly diagnosed with a life-limiting condition, 2) mid-stage of their illness, which means that active treatment with life-prolonging or potentially curative treatments is provided, 3) end-stage where

treatment options have failed. The goal is to have children approximately, equally distributed across these illness stages at each site.

PIC:TFK operates in eight sites across the state: Pensacola, Jacksonville, St. Petersburg, Sarasota, Ft. Lauderdale, Ft. Myers, West Palm Beach, and Miami6. A child must reside in one of the eight sites and each site has an associated local hospice that has demonstrated expertise in caring for children. Participating local hospice organizations are: Covenant Hospice, Community Hospice of Northeast Florida, Hospice of the Florida Suncoast, Tidewell Hospice, Gold Coast Home Health and Hospice, Hope Hospice, Hospice of Palm Beach County, and Catholic Hospice.

CMSN nurse care coordinators are charged with identifying children that might be potentially eligible for PIC:TFK. The primary care physician for a potentially eligible child is contacted for a referral to the PIC:TFK program, and if given, the family is then approached by the CMSN nurse care coordinator about enrollment. Once a family agrees to enroll, hospice staff perform and initial intake assessment with the family and a plan of care is developed. Parents and the primary care physician also receive a copy of the care plan. Hospice and CMSN staff work together to ensure that the care plan is appropriate and is being followed.

2 Background & Purpose

At A Glance

PIC:TFK is thefirst publicly

financedpediatric

palliative careprogram in the

U.S.

pg 6

After a plan of care is agreed upon, the hospice provides the following palliative care services as agreed upon in the care plan:

• Art, music, and play therapies,

• Pain and symptom consultation,

• In home nursing,

• In home personal care,

• Respite care,

• Counseling, and

• Bereavement counseling7.

The federal Centers for Medicare and Medicaid Services (CMS) approved the PIC:TFK program as a 1915(b) Medicaid waiver program in 2005. As a result, the State was charged under federal guidelines with conducting an Independent Assessment (IA) of the PIC:TFK program. The Institute for Child Health Policy at the University of Florida (the Institute) was awarded the IA contract and in preparation for meeting the federal assessment requirements, developed and tested survey instruments to capture family satisfaction within the program in 2005-2006. During the 2006-2007 contract year, the Institute conducted the first evaluation of the PIC:TFK program. Survey instruments were further refined, and several new evaluation components were added for year two.

The Institute has added the following functions in year two:

• Assume the responsibility of the monthly enrollment data collection and reporting process,

• Identify potential enrollees through claims and encounter data,

• Conduct separate site visits with CMSN and hospice personnel,

• Analyze cost data, and

• Develop a methodology to identify a group of comparison children enrolled in CMSN and not receiving PIC:TFK services and use survey data from that group to validate several national, standardized survey instruments.

The purposes of this report are to:

• Describe the characteristics of children enrolled in the program from June 2007 to January 20088,

• Describe the results from a hospice administrative survey,

• Describe the results from a CMSN administrative survey,

• Present the qualitative findings from site visits with CMSN and hospice personnel,

• Describe the results from the parent satisfaction and quality of health care survey,

• Describe the results from cost analyses, and

• Describe the process used to identify and the survey comparison children enrolled in CMSN and how that data will be used to validate several national survey instruments.

2 | Background & Purpose

PIC:TFK is the first publicly-financed pediatric palliative care program in the U.S.

Children must be clinically and financially eligible for PIC:TFK to be enrolled

PIC:TFK operates in Ft. Myers, Pensacola, Gainesville, St. Petersburg, Miami, West Palm Beach, and Jacksonville

At A Glance

Nurse carecoordinators

identify childrenfor potential

enrollment fromtheir caseloads

The child’sprimary care

physician (PCP)is contacted for

a referral

Once thePCP and the

family agree toenroll, hospicemakes an initialassessment anddevelops a care

plan for each child

pg 7


Finally, survey data were collected via telephone. Survey data were collected for parents whose children are enrolled in PIC:TFK and parents whose children have similar diagnoses, but do not reside in an area where the PIC:TFK program is offered (this group is referred to as the comparison group throughout this report).

During the 2005-2006 contract period, a committee of University of Florida clinicians, Institute faculty and staff, and the PIC:TFK Program Director identified and selected parent and child survey instruments for use in this evaluation. The committee recommended pilot testing specific sections of several nationally recognized survey instruments for children and parents. After two rounds of testing and refinement, the parent survey was administered.

In 2007-2008, the parent survey was further refined by the Institute’s Technical Advisory Panel in June 2007. The purpose of the Technical Advisory Panel is to guide the evaluation to ensure that it is effective and efficient.

The final parent survey for 2007-2008 is comprised of the following modules; 1) the Consumer Assessment of Health Plans Survey (CAHPS) Version 4.0, child9, Medicaid, 2) Impact on the Family Scale10, 3) PedsQL Core11, 4) Center for Epidemiologic Studies Depression Scale (CES-D), 5) PIC:TFK satisfaction module, and 6) Demographics. Modules of the survey are described in the following page.

Five data sources are used in this report. First, each PIC:TFK site submitted monthly enrollment data throughout the 2007-2008 fiscal year. Second, a hospice survey was administered and responses were collected by email about operational practices, standards of care, and procedures. Third, a CMSN survey was administered and responses were collected by email about procedures, communication with hospice partners, training, and support from headquarters. Fourth, qualitative data were collected from site visits with CMSN and hospice personnel.

At a Glance

The parentsurvey includes

the followingmodules:

Satisfaction • questions

CAHPS• PedsQL- Core•

Impact on Family• CES-D•

3 Data & Evaluation MethodsThe 2007-2008 parent survey contains the following modules.

CAHPS: The Consumer Assessment of Health Plans Survey (CAHPS), child Medicaid version 4.0 was used to assess several components of the parents’ health care experiences with their children. Independent Assessment (IA) instructions from the federal Centers for Medicare and Medicaid Services recommend using the CAHPS modules to capture program satisfaction and quality. The CAHPS questions related to the following areas:

• Ability of doctor to explain things in a useful way to parent and child,

• Choices offered to parent and child when decisions were made,

• Involvement of parent in decision making process, and

• Assessment of family-centered care.

The items on the CAHPS can be grouped to obtain composite scores for several domains of care including: getting needed care, getting needed care quickly, doctor communication, the health plan, prescription medication, specialized services, family-centered care (having a personal doctor, shared decision-making, and getting needed information), and care coordination. Initially, the CAHPS in its entirety was tested with a sample of 10 families whose children have life-limiting conditions. However, the items in several of the domains focus on preventive and routine acute care needs and were not applicable

pg 8

to this evaluation. However, the domains of family-centered care (and it sub-domains), and doctor communication were selected because these domains address critical issues for families whose children have life-limiting conditions. The total score ranges from 0 to 100 with higher scores indicating more positive experiences with care for the composite.

It is important to note that the CAHPS module was revised this year by the federal Agency for Healthcare Research Quality (AHRQ). Several of the questions from version 3.0 were either omitted or changed. Therefore, the Institute does not recommend that comparisons be made from CAHPS modules in this report to those in previous reports.

Impact on the Family Scale (IOF): This survey module was used to measure the impact of the children’s illness on the families’ personal relationships and finances. Parents respond by strongly disagreeing, disagreeing, agreeing, or strongly agreeing to a series of 15 statements about living with an ill child. For example, parents were read the statement, “My child’s illness is causing financial problems for the family.” Responses are scored from 1 to 4 and summed, then normalized to a 100 point scale for ease of interpretation. Higher scores indicate a greater impact on the family12.

PedsQL Generic Core: The PedsQL Generic Version 4.0 was used to measure health related quality of life (HRQOL) in children ages 2 to 18. Parent

and child versions were used where appropriate. The PedsQL Generic form consists of 23 items associated with the following domains: physical, emotional, social, and school functioning. Each set of functioning questions is tailored to the child’s age and respondents are asked to answer if their child Never, Almost Never, Sometimes, Often, or Almost Always had a problem with that functioning element. The items are reverse scored and linearly transformed on a 0 to 100 scale. Higher scores indicate better HRQOL.

Center for Epidemiologic Studies Depression (CES-D) scale: This survey module measures parents’ current emotional and mental functioning. Since a child’s life-limiting illness may affect the parent’s ability to cope emotionally and mentally, parents were asked a series of questions that focused on how they were feeling in the past week. Respondents can choose from four answers including: Rarely or None of the time, Some or a Little of the time, Occasionally or a Moderate amount of time, and Most of the time. Responses were scored from 0 to 3 and summed, with four items related to positive feelings reverse scored. Possible scores range from 0 to 60. A score greater or equal to 16 is indicative of probable current depressive symptoms, with higher scores signifying greater depressive symptoms.

PIC:TFK and CMSN Satisfaction Questions: Finally, parents were asked about their enrollment and overall experiences with the PIC:TFK and CMSN programs. Several questions were asked about the satisfaction with the benefits, unmet needs, and the best and worst aspects of the program.

3 | Data and Evaluation Methods

pg 9

Partners in Care Together for Kids | 2007 - 20084 Enrollment Trends

In November 2005, the PIC:TFK Program Director developed a data transmission procedure for all PIC:TFK sites. Each site was required to send enrollment data at the beginning of the month using the approved template. During 2007-2008 the Institute subsumed the processing of the monthly enrollment file. The data file contained information on: child’s name, age, contact information, stage of illness (newly diagnosed, mid-stage, end-stage), funding source (Title XIX, Title XXI, or Safety-Net), gender, diagnoses13, date Primary Care Physician (PCP) contacted, date family contacted, admission date, discharge date, and reason for discharge. A separate spreadsheet reports similar information for children who were potentially eligible for PIC:TFK but not enrolled14.

In May 2007, the enrollment figures were adjusted to ensure that all PIC:TFK enrollees had received an initial hospice assessment. Thirty

nine children without an initial hospice assessment were excluded from the enrollment figures.

At the beginning of the 2007-2008 state fiscal year 311 children were enrolled in PIC:TFK. The percentages of enrollees by site were:

• Ft. Myers 19%,

• Jacksonville 18%

• Miami 3%

• Pensacola 19%

• St. Petersburg 25%, and

• West Palm Beach 19%.

The majority of children were in mid-stage of illness (81%), while 9% were newly diagnosed and 10% were end-stage. Children were partitioned by diagnoses and the top 10 were: Congenital Anomaly/Genetic, Brain injury/development, Neoplasms, HIV, Convulsions, Cerebral Palsy, Muscular Dystrophy, Cystic

At A Glance

At enrollment, the majority of children

are in the mid-stage of illness

Less than 10% of enrollees are newly

diagnosed

Figure 1 PIC:TFK Enrollment Trends, January 2006 to January 2008

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Fibrosis, cardiovascular disorders, and transplants. Ninety percent of all enrollees were Title XIX eligible, 6% Title XXI, and 4% Safety-Net.

PIC:TFK enrollment increased during the 2007 calendar year. As of January 2008, which was the most recent enrollment data file received from the sites, the PIC:TFK program had grown 50% (since July 2007), to 468 children15. The percentages of enrollees by site in January 2008 are:

• Ft. Myers 23%


• Miami 4%

• Pensacola 19%



As of January 2008, the majority of children were still in mid-stage (85%), while 7% were newly diagnosed and 8% were end stage. Children were categorized

pg 10

Figure 2 Monthly Enrollment By Site, June 2007 and January 2008

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4 | Enrollment Trends

Figure 3 Active Enrollment Trends, January 2006 to January 2008

Figure 4 Active Enrollment By Site, June 2007 and January 2008

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by diagnoses and the top 10 were: Brain injury/development, Congenital Anomaly/Genetic, Cerebral Palsy, Convulsions, Neoplasms, Muscular Dystrophy, HIV, Cystic Fibrosis, Cardiovascular disorders, and Diabetes. Ninety-two percent of all enrollees were Title XIX eligible, 4% Title XXI, and 4% eligible through Safety-Net.

Figure 1 shows that monthly enrollment in PIC:TFK has steadily increased since implementation and reached a milestone of 400 enrolled children in September 2007. Total enrollment has increased 121% from January 2007 to January 2008 however, over the same time period the disenrollment rate increased by 170%. As of January 2008, with 298 active enrollees, the program reached about 30% enrollment capacity.

By site, enrollment trends have been similar to the statewide figures. Figure 2 shows enrollment figures for June 2007 and January 2008 for each site. Percentage growth by site, unadjusted for disenrollment figures, from June 2007 to January 2008 is:

• Ft. Myers 84%


• Miami 100%

• Pensacola 58%



active enrollment trends

By January 2008, one-third of PIC:TFK enrollees had left the

pg 11


Figure 5 Disenrollment Trends, January 2006 to January 2008

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lees

program while two-thirds continue to receive services. In this report, children currently enrolled in the PIC:TFK program are referred to as active enrollees and children discharged from the program are referred to as disenrollees. As of January 2008, there were 298 active enrollees and 170 cumulative disenrollees.

Figure 3 shows that the number of active enrollees has increased 113% from January 2007 to January 2008. Active enrollees filled approximately one-third of the 940 funded program slots in January 2008.

In January 2008, the majority of active enrollees were in mid-stage (87%), while 6% were newly diagnosed and 6% were end stage. Ninety-three percent of active enrollees were Title XIX eligible, 4% Title XXI, and 3% eligible through Safety-Net.

A snapshot of the active caseload for each site is reported in Figure 4. The site with the largest active caseload in June 2007 was St. Petersburg however this site had the fourth largest caseload by January 2008. Ft. Myers had the largest active caseload in January 2008, nearly doubling their caseload in 7 months.

disenrollment trends

Since the PIC:TFK program began, 170 children have disenrolled from the PIC:TFK program. Figure 5 shows that the number of disenrollees has increased steadily,

increasing by 154% between January 2007 and January 2008. The ratio of active enrollees to disenrollees dropped from 9:1 to 2:1 between January 2006 and January 2008.

The main reasons for disenrollment as coded by the CMSN offices are:

• Child moved out of the hospice service area (20%)

• Family is not contactable (8%)

• Child lost CMSN coverage (11%)

• Child is covered by private insurance (5%)

• Child died (11%)

• Family discontinued services (15%)

• Family did not want services (13%)

• Child’s goals met, services no longer needed (7%)

• Child moved to a long term care facility (1%)

• Child became a hospice patient (5%), and

• Other reasons (3%).

At A Glance

The main reason for disenrollment is loss of CMSN

eligibility and relocation

One-third of families

discontinued PIC:TFK services either because the services were no

longer needed or at the families request

pg 12

Table 3 shows the sites’ progress with their cumulative potential list, which includes names from both the May 2007 and October 2007 potential lists. Two sites were unable to report the status of more than half of the names on their cumulative potential list. The other four sites reported that they were unable to enroll between 83% (Ft. Myers) and 95% (Pensacola and St. Petersburg) of children on their potential lists.

Sites were asked to code the reasons why children on the potential list were not enrolled into the PIC:TFK program. Table 4 lists the cumulative reasons for non enrollment provided by the CMSN offices17.

On a quarterly basis, the Institute queries the CMSN Title XIX claims and encounter data to identify children with diagnoses of potentially life-limiting illnesses who may benefit from the PIC:TFK program. This new method was introduced to the PIC:TFK sites at the 2007 March Statewide Partnership Meeting, and was adopted on May 1, 2007. Sites were sent a 14 page Data Protocol containing information on: case finding, data transmission, data dictionaries, and reporting requirements16. Additional training was delivered to key CMSN personnel via telephone and in person in the fall of 2007.

On May 1 2007, all sites were sent a list of children’s names that may be potentially eligible for the PIC:TFK program. The number of children on the potential enrollment list varied by site ranging from 213 children to 650 children. Table 1 shows that 1.5% of children on the first potential list (distributed in May 2007) were enrolled in PIC:TFK program by July 2007, and an additional 2.8% of children on the first potential list had been enrolled during the period of July 2007 to January 2008. Ft. Myers recruited more children from the potential list than any other site.

A potential list progress report was sent to the PIC:TFK Steering Committee in August 2007. In response to this report, the PIC:TFK Steering Committee developed and distributed the

Quarterly Potential List Policy, and the second potential list was authorized for release to the sites in October 2007. The October potential list was smaller, containing between 29-106 names per site. Table 2 shows that 2% of children on the second potential list were enrolled in PIC:TFK between October 2007 and January 2008. Again, Ft. Myers recruited more children from the second potential list than any other site.

5 Potential Enrollment List

Table 1 Enrollment from the May 2007 Potential List, By Site

Site

Percentage of potentially eligible children on the May 2007 list enrolled in PIC:TFK

By July 2007 By January 2008

Ft. Myers 9% (19/213) 18% (38/213)

Jacksonville 0% (0/371) 3% (12/371)

Miami 1% (4/650) 1% (7/650)

Pensacola 2% (5/213) 5% (11/213)

St Petersburg 0% (1/286) 4% (13/286)

West Palm Beach 1% (3/410) 2% (10/410)

TOTAL 1.5% (32/2,143) 4.2% (91/2,143)

Table 2 Enrollment from the October 2007 Potential List, By Site Site

Percentage of potentially eligible children on the October 2007 list enrolled in PIC:TFK by January 2008

Ft. Myers 10% (4/39)

Jacksonville 0% (0/64)

Miami 0% (0/105)

Pensacola 0% (0/29)

St Petersburg 0% (0/39)

West Palm Beach 5% (2/41)

TOTAL 2% (6/317)

pg 13


The most frequent reason given for non enrollment was that child did not require PIC:TFK services at this time, primarily because staff considered the diagnosis to be inappropriate or that the child was in good health or a stable condition. A complete list of children’s diagnoses and non enrollment code for this category was forwarded to the PIC:TFK Program Director in August 2007.

The second most common reason for non enrollment was that the family was not interested in the service at this time. One site reported that 95% of children could not be enrolled because the family declined the services. This site contacted families either by letter, phone or in person and did not receive positive feedback that families were interested in joining the program.

The third most common reason was that the child was no longer a CMSN member. Four sites reported that between 7% and 28% of children on their potential list were no longer CMSN members. This occurred because the Institute generated the potential list from AHCA claims and encounter data, which has an inherent 3 month lag. Currently CMSN staff must check the Child Assessment and Plan System (CAPS) to ascertain the children’s current enrollment status.

Table 3 Cumulative Potential List Progress by January 2008, By Site

Enrollment Status

Ft. Myers

Jacksonville

Miami

Pensacola

St. Petersburg

West Palm Beach

No progress 0 28 719 212 2 212 Physician contacted 1 0 22 0 0 0 Family contacted 1 9 0 1 4 3 Enrolled in PIC:TFK 42 12 7 11 13 12 Unable to enroll child 208 386 7 18 306 224 TOTAL 252 435 755 242 325 451

Table 4 Non Enrollment Reasons for Children on the Cumulative Potential List, By Site Non Enrollment Reason Ft

. Mye

rs

Jack

sonv

ille

Mia

mi

Pens

acol

a

St. P

eter

sbur

g

Wes

t Pal

m

Bea

ch

Physician refused 0 34 2 1 1 0 CMSN unable to reach family 0 38 0 1 2 7 Hospice unable to complete initial assessment 0 0 1 1 0 10 Family not interested in program at this time 78 30 3 2 234 11 CMSN/Hospice feel that the child does not need PIC:TFK services at this time

79 180 0 10 37 104

Hospice does not serve this area 1 2 0 0 8 1 Child lost CMSN coverage before enrollment 29 81 0 0 21 62 Child moved out of hospice service area before enrollment

16 10 0 0 21 23

Child died before enrollment 1 0 1 0 0 2

Child moved to long care facility or full hospice before enrollment

1 3 0 0 0 4

Other 3 8 0 3 2 0 TOTAL 208 381 7 18 306 224

pg 14

Surveys were sent in 2007 to the six CMSN area offices who have been actively participating in the program since its inception. The CMSN offices are: Ft. Myers, Jacksonville, Miami, Pensacola, St. Petersburg, and West Palm Beach. The CMSN administrator survey asked questions about partnerships and support, staff training, program operations, enrollment procedures, and areas where the program could improve. The surveys were followed by a separate site visit to the CMSN and hospice offices to clarify survey responses. Survey results highlight achievement, areas for improvement, systemic challenges and lessons learned.

staFFing CMSN administrators report that there are between 12 and 36 nurse care coordinators at their CMSN offices, with an average of 23 care coordinators. Few of the care coordinators had prior experience in hospice or palliative care (between one and four care coordinators per site). Two-thirds of the sites report vacancies, which tend to increase individual caseloads and exacerbate workload issues.

The caseloads are assigned differently across the CMSN offices. During the site visits, three sites commented that there was a designated care coordinator who managed a smaller caseload of high needs children, whereas one office assigned caseloads based on the child’s medical home assignment. Four CMSN offices anecdotally report that the average care coordinator caseload was between 150 and 200 children, with some individuals having caseloads approaching four hundred children.

CMSN offices report significant increases in both their Title XIX and Title XXI caseloads. It is possible that these increases are due to a recent economic downturn in Florida.

role oF the Pic:tFk cmsn liaison

At the time of implementation, the PIC:TFK program did not allocate dedicated CMSN staff positions to each of the participating offices, so all sites designated one staff member to take on the additional duties of becoming the PIC:TFK CMSN liaison. At four sites, a second person was designated to assist the PIC:TFK liaison. At the other two sites, care coordinators took on some additional functions. The following tasks form part of the PIC:TFK CMSN liaison’s role:

• Contact the Primary Care Physician (PCP) to explain the program and seek signature on the authorization form;

• Discuss services with the family, or delegate the individual care coordinators to do so;

• Attend monthly inter-agency meetings and regularly liaise with hospice personnel;

• Update the children’s care plans on the Child Assessment and Plan System (CAPS);

• Train the care coordinator staff, often at multiple office locations;

• Participate in Statewide technical calls and PIC:TFK trainings; and,

• Maintain the potential enrollment lists and active enrollment logs.

enrollment

Enrollment efforts increased considerably since the 2007 PIC:TFK Statewide meeting. All CMSN sites have a member services group responsible for intake screening into CMSN. Five of the six sites report educating their member services personnel about the PIC:TFK program, with a goal of identifying more potentially eligible children at the first point of entry into the CMSN system. Three sites commented that a PIC:TFK box was added to the TIER form used for intake screening. One site also commented that they were assessing all children at the time of recertification to determine if a child meets eligibility criteria for the program.

The implementation guidelines state that “Prior to discussions with the family regarding PIC:TFK, the CMSN care coordinator must have written documentation from the child’s primary care physician or specialist physician stating that the child has a potentially life-limiting condition.” Several sites question this mandate, citing that it is sometimes more practical to contact the families first. These sites believe that it is better to determine family interest in the program before seeking a referral from the PCP. Sites state that they would like clarification on whether there is an option to modify operations at the local level or if the 1915(b) Medicaid Waiver requires the PCP to always be contacted before contacting the family.

6 Survey of CMSN Sites

pg 15


Potential list

CMSN headquarters asked the Institute to generate a database each quarter by querying the CMSN claims and encounter data. This database identifies children with potentially life-limiting illnesses that might benefit from the PIC:TFK program by using diagnostic information found in the claims and encounter data. This new methodology for enrolling clients was proposed at the Statewide meeting because the sites were not using consistent strategies to identify potentially eligible children. The new methodology was adopted in the second quarter of SFY 2007. Although the CMSN sites supported the premise of the potential list and reported that it was helpful, many encountered implementation challenges initially.

First, the volume of children on the initial potential list was large for many sites. Second, sites reported technical difficulties manipulating the data in the EXCEL template and requested further instruction. A typical comment was that the potential lists were “helpful but cumbersome.” In response to this feedback, the Institute addressed individual concerns during the months of August to October by telephone, face-to-face meetings, and by distributing a detailed EXCEL instruction sheet.

Third, CMSN headquarters released the quarterly potential list policy in October, which caused concern at some sites. The policy specified that CMSN staff must document three attempts to provide the informed consent to the family, after which a letter could be

sent to the family. Several sites commented that this increased level of documentation had created additional workload for staff and they would like either more assistance or be consulted during the development of new policies.

Lastly, one site felt that the potential list was unnecessary and that the care coordinators could rely on their professional judgment to identify families appropriate for the program.

leadershiP suPPort

All sites report that they received adequate support from CMSN headquarters, the Regional Medical Director, and the local AHCA administrator during SFY 2006-07. Comments by the CMSN offices reveal that they have been better supported in 2006-07 and enjoyed opportunities to discuss the program directly with the PIC:TFK Program Director, and network with other sites at the Statewide meeting and technical assistance calls.

Support

Potential List

“The potential list is a useful teaser to get feedback from care coordinators, how-ever the increased pressure to contact or attempt (3 times by phone/person) and document and then send a letter, is additional workload for everyone concerned and is creating further barriers within the office...It is quickly becoming too much for someone who has the primary responsibility to another full-time position… When new policies are implemented, always educate staff to the policy first before mistakes are made and staffs then have to double back and repair the damage.”

“Our CMSN care coordinators are so complete in their care coordination that I feel that if PIC:TFK was needed or wanted by families the referral would have been made already. We did not need lists to let us know who was and was not appropriate for a PIC:TFK referral.”

“Since the inception of the program, I have learned a lot through the technical assistance calls and the annual state meeting…that particular workshop was most beneficial as it allowed for free exchange of ideas, networking and trouble-shooting.”

“We have experienced better support during the last year. The technical assis-tance has been very helpful….we feel the support has opened communication between CMSN and hospice.”

“The additional duties required for the PIC program have appeared daunting to the NCC, but the use of the new care plan and the recent training by the PIC:TFK Program Director have helped to calm that fear…The PIC:TFK Program Director has been very helpful. The development of the forms tool box was long overdue. The annual meetings have been a very good tool for training and networking. I get much less out of the conference calls.”

pg 16

Sites were asked to rank the usefulness of the PIC:TFK protocols and these rankings are given in Table 5. The Statewide meeting, implementation guidelines, training, and standardized forms are ranked most useful, while the PIC:TFK Program Director’s monitoring visits and chart reviews are rated least useful.

In July 2007 all sites adopted the standardized forms per CMSN’s direction and their initial comments indicated that the forms were useful, but not completely user friendly. Sites also commented on the increased demands for documentation. For instance, the care plan initially required signatures by hospice, CMSN staff, family members and the PCP. Sites felt that requiring the PCP to sign was duplicitous because the PCP had already authorized services for the child to become enrolled. In response to the sites’ feedback, the PIC:TFK Program Director removed the requirement for the PCP signature. One site also commented that the program should “minimize the number of care plans (i.e. CAPS care plan, initial care plan, quarterly care plan, hospice care plan).”

As seen in Table 5, the technical calls received mixed ratings with regard to usefulness. All sites liked to receive technical assistance, but suggest reformatting the support to either focus on CMSN specific issues, decrease the number of call participants, decrease call frequency, or provide email updates instead. The PIC:TFK Program Director sent out a survey to the sites to solicit suggestions for improvement on the technical assistance calls.

As seen in Table 5, the chart reviews and site visits were considered the least useful protocol. Some sites did not understand the purpose of the audit, and others felt that it was punitive and did not take into consideration some of the constraints facing the CMSN offices.

“Our site visit was not done well last year...I was very frustrated that our records were not reviewed electronically and felt the results were punitive, not constructive and helpful. I am discouraged that this program utilizes a different format and different tools for evaluation than the other specialty program who use a standardized format. However since the annual meeting, I feel like our issues are being addressed and folks are listening to our concerns and trying to make this program work.”

All six sites participated, or are scheduled to participate, in training with the PIC:TFK Program Director during SFY 2007-08. For the sites where training has already occurred, between 75% and 100% of staff attended the trainings. Sites who had completed the training commented that these sessions

were helpful. Additionally two sites have held a ‘lunch and learn’ session with their hospice partners to discuss pediatric palliative care concepts, to present case studies, or to demonstrate therapies. All sites were receptive to hosting an in-service session with hospice staff in 2008.

One site planned to hold quarterly inter-agency meetings to discuss CMSN operations, benefits and insurance coverage, and in turn to receive organizational information about hospice operations.

“The therapists provided an in-service for our staff…all staff were invited to take part in making a sand art sculpture which we were allowed to keep at the end of the day…this provided staff with an opportunity to see what happens when children are receiving these services.”

Palliative care curriculum

The PIC:TFK implementation guidelines require that “95% of the professional staff of hospice and the CMSN who provide direct care or contact with the PIC:TFK program will complete within 24 months or program startup or assignment to

Table 5 Ranking of Usefulness of PIC:TFK Protocols, By CMSN Office

Protocol CMSN Office Site

One Two Three Four Five Six

PIC:TFK implementation guidelines 2 2 1 2 2 6

Standardized forms 3 5 2 1 1 7

Statewide meeting 1 1 7 3 3 3

Technical assistance calls 4 3 4 7 5 2

Training by Program Director 6 4 3 4 4 1

Chart reviews by Program Director 5 6 6 5 6 5

CMSN site visits by Program Director 7 7 5 6 7 4

6 | Survey of CSMN Sites

pg 17


the program, 100% of the modules in the NHPCO pediatric palliative care curriculum, the ELNEC pediatric palliative care curriculum or any curriculum approved in advance by the PIC:TFK Steering Committee.” There was some confusion among the sites about which CMSN staff should undertake the pediatric palliative care curriculum, and the rationale behind this requirement. All CMSN offices question the value of having their staff complete the curriculum, citing suitability of the curriculum, time commitments, and cost.

Currently two CMSN offices have completed the ELNEC curriculum. These CMSN offices felt that the curriculum was not appropriate in its entirety, because the focus was predominately on oncology patients in the hospital setting and on adult end of life care.

PartnershiPs

All CMSN offices report good to excellent working relationships with their hospice partners, after initial hurdles at some sites. A typical comment is that the hospice staff is, ”very flexible, easy to work with and their commitment to children is extraordinary.”

All sites report holding regular care planning meetings between CMSN and hospice staff and also report that hospices are responding to CMSN staff in a timely manner. Most sites report very frequent contact between CMSN and hospice staff, communicating several times a week by fax, email or telephone. At the beginning of the program’s implementation some sites reported personality conflicts between staff at the hospice and CMSN, but these have either been resolved, or there has been staff turnover.

The PIC:TFK liaisons are passionate about the program, and have built strong working relationships with their hospice partners. When asked what they liked best about the program, staff acknowledged the specialized services that children received through the PIC:TFK program.

“The PIC:TFK programs pays for such a rich array of services for families...no other insurance plan would pay for expressive therapy or counseling!” or “The PIC program offers our children additional support to help them deal with their disease process…something that CMSN cannot do alone.”

care coordinator Buy-in

All PIC:TFK liaisons report working hard with their care coordinators to encourage more referrals. Sites report small to large success in increasing care coordinator buy-in, some of which has come with

Palliative Care Curriculum

“I understand why the hospice nurses are required to take ELNEC but I don’t understand why CMSN staff has to do a certification, when what they really need is an understanding. A small condensed version [of ELNEC], or even training by the PIC:TFK Program Director would be more helpful if a curriculum is required. We need an inexpensive, if not, free way to get the palliative care curriculum completed by all staff.”

“It would be really helpful if nurse care coordinators could receive training in pediatric palliative care, not that it needs to be indepth, but cover the basics.”

CMSN Buy-in

“I think some care coordinators with really complex cases have noticed that their phone isn’t ringing as much anymore, and that has helped [referrals] a lot.”

“We feel that the PIC:TFK program is now being positively received by the care coordinators since the initial barriers have been overcome. Initial barriers included staff not fully understanding the program- its concept and goal; especially how the PIC:TFK program was different from the traditional hospice program….As our care coordinators began to hear stories of how a child and his/her family have been affected and how they have benefited by the support offered by the program, the more clearly they see the benefits of the PIC:TFK program….Also the care coordinators have an added bonus in that families that would have called them several times a day for support now call the hospice contact for emotional support and counseling – she lends a “listening ear” to those parents of caregivers who need a little extra touch.”

“There has been a level of resistance [from care coordinators] to refer due to difficulty discussing end of life care issues with families. There has also been resistance to refer due to lack of services available to children when the program began.”

pg 18

from increased familiarity with the program details and concept. Sites report that the care coordinators are most likely to buy-in to the program when they see positive outcomes with their families, or when their own workload decreases as the hospice became more involved with the family. The CMSN care coordinators observe that the hospice staff are an “extra pair of eyes and ears” in the children’s homes, and are happy when the hospice workers alert them to any unmet care coordination needs.

Many sites commented that their care coordinators were uneasy at first about making referrals, but most are now at ease approaching the families. Although sites are making strides in this area, some sites still report resistance from a select few care coordinators. These few care coordinators are not making referrals either because of reticence to discuss palliative care with the families, a lack of time due to large caseloads, or an anticipated feeling that some families would not like to be contacted about the PIC:TFK program.

Furthermore, two sites commented that care coordinators initially resisted making referrals due to insufficient PIC:TFK services when the program began. For example, some hospices did not have the resources to provide respite care initially and nurse care coordinators did not want to offer a program where the advertised services were not available. In the case of several hospice sites, service provision has improved as a result of hiring more staff, increasing respite hours, or by expanding the scope of services.

Two sites commented that the PIC:TFK brochures need to reflect the services available locally; otherwise the brochures could be misleading to parents. For instance, three sites reported providing limited respite, and five sites did not have a credentialed activity therapist.

“There is a lack of providers or no providers in our area that provide the services listed in the PIC:TFK brochure. There are certain [areas] that don’t have the manpower to provide respite or nursing care. There are no providers that have been located that can provide music or art therapies.”

Family Buy-inA few sites commented that some families did not want, or have time, to utilize the PIC:TFK services. One site also observed that some cultural groups are less accepting of the services. Some sites report that there are other community resources that meet the children’s counseling needs, such as established HIV, oncology or diabetes programs. The challenge for the CMSN offices, therefore, is to market those differential aspects

of the PIC:TFK program that are not offered by other providers, and to do so in a culturally sensitive manner. Sites which offer respite and activity therapies report that these services are in high demand by families.

Physician Buy-in

Five sites report that area physicians viewed the PIC:TFK program positively, and that as physicians became more familiar with the services and benefits, they are increasingly receptive to the program. One site, however, reports little enthusiasm from physicians and suggests providing evidence from studies that have found palliative care beneficial to advance the program and its philosophy to physicians. Several sites identified that they should improve their outreach efforts to PCPs in the wider community who were unfamiliar with the program.

One site utilizes its primary care network to distribute educational information about PIC:TFK to their physicians and two sites report that their hospice partner had done a presentation at hospital grand rounds. All sites report that

Family Buy-In

“We need to explore strategies of how to present the program to cultures that are not very accepting of end of life care for children.”

“There are other community resources that can meet the children’s needs…PIC:TFK does not stand out differently as to what they can better offer our families. PIC:TFK respite care is becoming more available recently and that has helped in marketing the program to families….Families usually don’t know they want the counseling until the counselor comes…what they really want is the re-sources they can’t get anywhere else, and they can’t necessarily get [respite and activity therapies] in the program either.”


pg 19


they had done some outreach to community groups to increase referrals, be it with hospital social workers, pediatric societies, or medical foster care meetings. Although sites agree that PCP education is important, two sites comment that the main source of referrals is, and will probably continue to be, the CMSN care coordinators.

Several sites have comments and suggestions about the PCP authorization forms. Two sites suggest that the referral process could be more streamlined if the reauthorization forms could be incorporated into the CMSN referral and coordination form. The PCP would then only need to be contacted once a year to reauthorize PIC:TFK services at the same time as all other CMSN services.

CMSN sites commented that they had occasionally encountered PCPs who resisted signing the initial authorization form to attest

that the child “is at risk for a death event prior to reaching 21 years of age.” In response, the PIC:TFK Program Director reworded the authorization to read that the child has a “potentially life-limiting illness” and sites report that this form is better received by physicians.

systemic challenges

A number of bureaucratic issues were mentioned during the site visits. Several of these issues are beyond the auspices of the PIC:TFK Program Director and/or CMSN headquarters. However they are presented below to illustrate

some of the pressures facing the CMSN sites and to serve as points that may warrant further discussion.

When asked what needs to change about the program, three sites immediately responded that the PIC:TFK program needs to provide paid program positions. In the absence of designated staff, the responsibility of implementing the program and its services has to be incorporated into someone’s existing workload. These workload issues are further compounded by additional responsibilities such as the potential list.

Sites recognize the need for standardized practices but some found it difficult to keep up with all the documentation requirements. Many sites commented that they would like to be involved in discussions prior to the implementation of new policy documents. Several PIC:TFK liaisons request funds to hire an administrative person to help with documentation, as some of the tasks do not require a nursing background.

Workload issues

“It would be wonderful to have an identified position assigned to the PIC:TFK program for the administrative and coordination aspects. This person could be responsible for educational opportunities with the physicians, families, community providers etc. leading ultimately to more children enrolled in the program.”

“Provide assistance to the care coordinators with the paperwork and documenting for PIC:TFK. They have such large caseloads, that another program they have to contend with is a deterrent in getting referrals.…Designate either 0.5 or 1.0 FTE as PIC:TFK coordinator. This process is becoming very burdensome with new policies regarding the potential list and supportive documentation.”

PCP Buy-in

“The PCPs have become increasingly more receptive towards the program. Some have had questions about admission criteria for the program and services that are provided. The program information sheet explains the program very well and overall they have been very pleased with the services that the children are receiving.”

“We here at CMSN need to do a better job partnering with hospice to possibly go to each PCP’s office in the area and give them a quick blurb about what PIC:TFK is about. Our first line of sales, though, ultimately lies with the care coordinators.”

“It would be helpful if the local Medical Director would provide additional informa-tion to the medical community about the PIC:TFK program, and possibly provide a means for the PIC:TFK liaison to introduce the program and provide further insight into the services that can be provided.”

pg 20

The nurse care coordinators also face similar workload challenges, with high caseloads often preventing them from knowing all their families as well as they would like. Two-thirds of sites report persistent vacancies and one site reports that the caseloads are approaching 400 children.

Sites also raised some frustrations with the Medicaid system, and this was even greater for sites undergoing Medicaid Reform. Under the 1915(b) Waiver, Medicaid is currently denying all PIC:TFK service claims for children no longer in Medipass, and an alternate mechanism for payment to the hospice program has not established. This billing issue has been brought to the attention of CMSN and AHCA headquarters and the waiver language is currently being amended.

All sites report adequate support from their local AHCA representative, although a couple of sites had had very limited contact. One site commented:

“It is not something that the local AHCA representative has control over but we believe it is a major issue that children who have private health insurance and Medicaid can not receive PIC:TFK services…There should be someway to override the requirement that they be enrolled in Medipass, since with private insurance they are Medipass exempt.”

lessons learned

All but one site participating in this survey have been operating for over two years, and as such, have many insights to share with new sites about infrastructure, working relationships, and service delivery. Some examples of lessons learned are below.

Lessons Learned

Collaboration

“Work together from day one in reviewing cases and service needs.”

“Be flexible. Understand that they bring the expertise to the table and respect them for that. Work as a team.”

“The working relationship now is very good, since previous hospice employees are no longer with the program. Initially there was quite a bit of resentment from hospice staff who felt that CMSN should not have gotten the waiver, the hospice programs should have.”

“Include PIC:TFK liaisons from hospice in CMSN staff opportunities when pos-sible (holiday parties, employee appreciation), anything to get the staff familiar with them. Also monthly staffing is imperative.”

Training

“Educate, educate, educate. Educate staff (care coordinators). Educate physi-cians. Educate families. Assist care coordinators as much as possible to re-duce additional work load. It would be great to have a designated FTE just for PIC:TFK.”

“Hold trainings in CMSN offices, especially initial trainings. When the program was first being implemented in our area, the first training was done at hospice and our staff perceived it as a hospice program rather than a collaborative program between CMSN, hospice and Medicaid.”


pg 21


In the fall of 2007, the six participating hospices were emailed an administrative survey about their operational practices, standards of care and procedures. The hospices are: Hope Hospice and Community Services, Community Hospice of North East Florida, Catholic Hospice, Covenant Hospice, The Hospice of the Florida Suncoast, and Hospice of Palm Beach County. This survey was adapted from the Managed Care Organization (MCO) Administrator Guide developed at the Institute for Child Health Policy. The MCO Administrator Guide has been reported in published papers18, 19. This survey was emailed to both the program’s primary hospice contact and to the hospice CEO. The survey covered the following areas:

• Organizational structure

• Care plans and care coordination

• Quality assessment and performance improvement

• Service utilization

• Enrollee rights and grievance procedures

• Health information systems and billing procedures

• Best and worst aspects of the program

• Support from headquarters

Survey questions assessed the hospices’ compliance with the PIC:TFK Implementation Guidelines and their performance against standard organizational measures. In some cases, hospices were asked to provide their local policy documents and forms as supporting

evidence. Survey findings provide valuable baseline information against which the success of the program can be measured in the future. Given that this in-depth survey was almost identical to the previous year’s hospice administrator survey, the Institute instructed the hospices to only indicate areas of change on survey. However, several addition questions were added, as well as a section on support from headquarters, and all hospices were asked to complete these questions.

As part of the hospice survey, administrators were asked to review their SFY 2006-07 survey responses and update any information that had changed from the previous year. Given that there were no significant changes in several sections of the survey, such as, organizational structure, enrollee rights, grievance procedures, health information systems and billing procedures, those answers will not be repeated in this report20. All six hospices responded to the survey. Results of the hospice administrator survey are presented by section:

role oF the Pic:tFk contact

Each hospice has a designated PIC:TFK contact responsible for day to day operations and liaising with CMSN. At three sites the contact was a social worker; at two sites a licensed mental health counselor; and at the remaining site the contact is a registered nurse.

Sites report that the following tasks form part of the PIC:TFK contact’s role:

• Deliver services as required;

• Train staff;

• Ensure staff adherence to PIC:TFK guidelines;

• Process referrals;

• Care planning;

• Chart maintenance and monitoring;

• Liaison with CMSN primary contact and care coordinators;

• Attend monthly inter-agency meetings; and,

• Participate in Statewide technical calls and PIC:TFK trainings.

PartnershiPs

Both partnering agencies have established good channels of communication, and all sites report that CMSN staff are responding to hospice staff in a timely manner. All hospices report frequent contact with CMSN staff, with most partners communicating at least several times a week by fax, email or telephone. All hospices are also holding regular inter-agency care planning meetings.

7 Survey of Hospice Sites

pg 22

Hospices are working hard to foster a good working relationship with CMSN and to develop a shared vision for the PIC:TFK program. By their very nature, the hospices have a different mission and focus, although both agencies recognize that a good working relationship requires time, commitment, flexibility and accessibility. Two hospices stressed the importance of establishing inter-agency forums where staff could learn about CMSN operations and any policies affecting the provision of PIC:TFK services.

Hospices have overcome some of their initial misunderstandings about the roles and responsibilities of CMSN. Conflicts appear to have been resolved either through increased communication, staff turnover, or guidance from the PIC:TFK Program Director.

When asked about setting boundaries with CMSN partners, all hospices report that this was not a problem. As one hospice commented “we are getting better at setting boundaries and giving out

resources.” Two hospices initially experienced some difficulties, but now reported no difficulties contacting the CMSN care coordinators directly if additional services or equipment are required. Two hospices report that it is sometimes difficult to get in contact with the individual CMSN care coordinators, but that is due to high caseloads and staff turnover.

leadershiP suPPort

All sites report that they received adequate support from CMSN headquarters, their regional Medical Director and their local AHCA administrator. Comments by the hospice sites reveal that they felt better supported in the past year and have enjoyed opportunities to discuss the program directly with the PIC:TFK Program Director, and network with other hospices.

Sites were asked to rank the usefulness of the PIC:TFK protocols and these rankings are given in Table 6. The implementation guidelines are ranked first by all but one hospice. Many hospices referred to the implementation guidelines as “their Bible”. This was the one resource they referred to for clarification and when orientating their new staff to PIC:TFK. After the implementation guidelines, the protocols that ranked highest are the Statewide meeting, the PIC:TFK Program Director’s site visit, and the standardized forms. There were mixed responses as to the usefulness of the PIC:TFK Program Director’s training, chart reviews, and the technical assistance calls.

Partnerships

“The front door is being opened up and the collaboration at the start of care with CMSN is significantly better. Their resources are more focused on the program and so are ours.”

“CMSN has been wonderful in providing appropriate referrals and providing up to date, accurate information about the families. CMSN calls if a child enters the hospital, if a family moves or if a physician has concerns about a certain aspect of a child’s care. They are happy to make changes to the initial care plan and are willing to approve nearly any service that the program coordinator feels is necessary for the family.”

“We are in partnership but are two totally different agencies, with different focus and mission. We have had to learn about each other and how to work best together. To continue to improve the program we need to continue to schedule interagency meetings and lunch and learns, for enhancement of a cooperative working relationship.”

Setting Boundaries

“I think the majority of the families, regardless of what needs they have, go to the people they see face to face. They know there is a CMSN care coordina-tor, but they will call our nurses/social workers first and they will end up calling CMSN…There’s been a couple of cases where we’ve needed something pretty quickly from CMSN for either safety or health reasons and they jumped on it... CMSN got the orders from the physicians, and got the equipment out there, made all the phone calls, we just let them know.”

“The CMSN case coordinators are dedicated to the mission of providing care to the children and families they service…however high turnover and staffing issues at CMSN can lead to communication breakdown and untimely follow through by nursing staff. Improvements that can be made would be to assign dedicated nurses to the PIC:TFK program to coordinate care with hospices.”

7 | Survey of Hospice Sites

pg 23


Two hospices commented that the PIC:TFK implementation guidelines were helpful in outlining roles and responsibilities, and a good starting point for discussion when the child’s management was not straight-forward. One hospice commented that roles need to be clarified effectively and explicitly before launching a new program.

training

All hospices report that the training by the PIC:TFK Program Director is helpful to some degree, but is limited in scope. Hospices

comment that the training is useful and appropriate for sites in the implementation phase, but that the existing service providers require more advanced training and/or a forum for discussion about hospice specific issues. They suggest a shift in the training focus towards discussing operational issues such as cost containment, staffing, and sustainability. Hospices suggest that the training be consistent and practical and should provide detailed information on billing procedures, cost containment, and subcontracting regulations. For established sites, training

should evolve from program implementation to operational concerns. Hospices suggest expanding the training modules to cover topics such as:

• Cost containment;

• Forecasting of staffing needs;

• Widening the basket of services;

• Medicaid reimbursement rates;

• Subcontracting services;

• Appropriateness of referrals;

• Timing the transfer of PIC:TFK enrollees over to full hospice;

• Building core competencies in pediatric palliative care; and,

• Case studies of complex cases.

When asked about the technical assistance calls, hospices report that the technical assistance calls are not reaching their full potential. Many hospices are not comfortable asking questions during the calls because they felt they should already know the answers, or that their question is not relevant to the wider group. In these instances, hospices either contact the PIC:TFK Program Director separately, or their questions are going unanswered.

Palliative care curriculum

Five of the hospices require their PIC:TFK staff to complete a pediatric palliative care curriculum, in adherence with the implementation guidelines. One hospice did not require their staff to complete training, but plans to in the future.

Leadership Support

“Up until the Statewide meeting I was still confused about what the program was, but after that meeting it became crystal clear. I think it was so important to hear about the other programs in the state and have the PIC:TFK Program Director clarify questions….We came away with a mission and knowing what we had to do.”

“We like the site visits, they have been useful to us, the Statewide meeting was useful and gave us an opportunity to network and discuss.”

“I think it is good to have the chart reviews and look at whether we are covering all the bases and doing what we are supposed to be doing.”

“I think the calls are good, the form revisions are good, and the PIC:TFK Pro-gram Director is doing a really good job.”

“The team felt that the training was very beneficial, informative and encouraging. They also felt that they had the ability to share issues, frustrations on current guideline limits and a few suggestions for continued program development.”

Table 6 Ranking of Usefulness of PIC:TFK Protocols, By Hospice Site Protocol

Hospice Site

1 2 3 4* 5* 6 PIC:TFK implementation guidelines 1 1 1 5 1 1

Standardized forms 2 2 7 7 4 4

Statewide meeting 4 6 3 1 3 1

Technical assistance calls 3 7 6 4 7 7

Training by Program Director 7 5 5 1 5 6

Chart reviews by Program Director 6 4 2 6 6 3

Site visits by Program Director 5 3 4 1 2 4

*sites report some tied responses

pg 24

One hospice requires staff to take both the Initiative for Pediatric Palliative Care (IPPC) curriculum and the End of Life Nursing Education Consortium (ELNEC) curriculum. One hospice requires IPPC only, another ELNEC only. Two hospices require staff to complete the pediatric ELNEC.

enrollment

When asked about the potential list, hospices commented that the list appear to have contributed to the increase in referrals. In turn, the increase in referrals had helped hospices plan their future personnel

requirements, and at some sites, has resulted in more staff being hired.

One hospice has experienced some difficulties getting families to buy-in to the PIC:TFK program. Some families are unfamiliar with the psychosocial and activity therapies and do not always buy-in to the concept until they observe an improvement in their child’s quality of life after receiving PIC:TFK services. One site commented that the PIC:TFK program has helped raise the hospice’s profile in the community as a pediatric palliative care provider and that partnering with CMSN has increased their accessibility to families who might need their services.

aPProPriate reFerrals

Although the hospices are pleased overall with the increased referrals and buy-in from the CMSN care coordinators, three sites commented that there is still room for improvement in referring appropriate cases. Three hospices indicated that their staff would like to be involved in the screening process for the PIC:TFK program.

Training

“The trainings have to evolve with the program..it is good to have the individual personal time with the PIC:TFK Program Director, but perhaps reconsider the objectives. Implementing the program doesn’t have to be one of the training objectives as the implementation guidelines are written so well. We are going to need different levels of training for existing sites and new sites.”

“There should be greater focus on developing clinical training modules that can be employed in order to further core competencies. I think getting training from someone who is an expert in hospice, pediatric palliative care, would be very helpful… The PIC:TFK Program Director has introduced us to the concept, but in some respects we need to move away from that and really look at building competencies for each discipline and start looking at outcomes.”

Technical Calls

“The technical calls haven’t been that useful...although the potential is there… I think it is trust issues and the sites not knowing each other.”

“The calls I have attended are very informative. I may not have a burning ques-tion, but just hearing from other sites might spur something on in my head.”

“The conference calls are sometimes very useful and sometimes not helpful at all.”

“It would be nice to have a safe place to ask questions, just where you feel comfortable, not that anyone is going to look down upon you, but you do need to say “we’re struggling here”, maybe if we could have more of a workgroup for hospices.”

Potential List

“The potential list of referrals has been a significant help and has proven to be an excellent tool to increase the number of appropriate referrals….the more children we enroll helps our program to become self-sufficient and our goal of ‘breaking-even.’ The greatest challenge was getting children referred from CMSN, but now we are seeing a steady stream of referrals.”

“I like the potential list, it gets people thinking….we’re excited about the coming year and getting to that population.”

“The potential list has got us out there in the community and our program has grown tremendously and I think we’ve really been able to make an impact in some children’s and families lives.”


pg 25


They suggest that the hospice complete an initial consultation to determine the appropriateness of the case for the program, from both a medical and psychosocial standpoint.

Several hospices commented that the CMSN care coordinators sometimes focused on the ill child and didn’t think about how other family members might benefit from PIC:TFK services. One hospice commented that they

were encouraging the CMSN care coordinators to look at PIC:TFK referrals from a family perspective, and identify whether the siblings or parents had any unmet needs or family stresses, even in instances where the child appeared to be in a stable condition. To address this concern, one hospice held a ‘lunch and learn’ and presented three case studies that focused on a sibling, a parent, and a case where there was a need for respite.

staFFing

Hospice has increased staffing levels in the last year in response to increased PIC:TFK referrals from CMSN. Four hospices report hiring more PIC:TFK staff in response to increased enrollment, and two hospices plan on hiring more staff. Three hospices mention that they are receiving referrals more regularly and this is helpful for planning purposes. As enrollment has grown, hospices have established core staff for the PIC:TFK program, rather than sharing staff with their adult hospice program. As a result, families have started receiving care from core pediatric palliative care staff which provides much needed continuity. As the PIC:TFK census has grown, hospice staff have become more comfortable with pediatric patients and adapted their therapies depending on the children’s age and diagnoses.

Hospices typically serve very few children relative to their adult census. During a one month period, between four and 36 children were enrolled as hospice patients compared with between 1,102 and 2,623 adult patients21.

Family Buy-In

“It has been a struggle selling this concept to families. Some of the children are very hooked into a system, they have a gazillion doctor appointments, and they may already have 24 hour nursing. It’s also very hard to schedule services, we find our staff have to work after hours of weekends to be able to see the fami-lies...We often feel that if we were involved from the get-go, with the children newly enrolled in CMSN, if were seen as one of the services, it would be easier to explain ourselves to them.”

“As a hospice we have always struggled with our numbers of (hospice) pediat-rics and wanting to provide more services. The PIC:TFK program provides a tremendous increase in access to children and families that need our help.”

Screening

“The PIC:TFK program needs to change the admission criteria, it is way too broad.”

“A lot of the children have social issues and we are happy to provide care to these children, but there haven’t been great examples of traditional palliative care referrals…we haven’t had a big need for palliative consults. We have had a lot of children referred who are cognitively impaired. These kids need occupa-tional therapy and are struggling with mental dexterity and our therapist has to accommodate this, and develop new ways of working with these children.”

“The provider should be able to make the determination if a child is appropriate for the program prior to a physician authorization being signed. Home health providers make such decisions routinely. Our experience shows that, even with CMSN screening, some of the referrals are inappropriate. Sometimes it takes an actual visit to the house to determine this.”

CMSN Referrals

“CMSN staff continue to focus on the ill child and don’t often evaluate the other family members for service. If the ill child is doing fine then they don’t think that perhaps other family members may be in need of services.”

“CMSN nurses are so entrenched in aggressive care aspect of treatment, that they will sometimes overlook the quality of life issues that our staff address…they may not be looking at the benefits of the services to ‘well’ children.”

pg 26

Hospices have a variable number of dedicated therapists and nurses on their PIC:TFK team. The number of PIC:TFK staff depends on the needs of the children and families, but is also determined by a number of exogenous factors such as, geographical service area, the staffing structure, subcontracting arrangements and staff members’ expertise. In hospices with large geographical catchment areas, staff mentioned that their goal is to build the program to a level where they could mimic a hospice regionalized model and set up mini-teams in each sub-area.

One hospice conducted a performance and financial analysis based on the average number of weekly services provided over six months to identify areas for improvement and forecast future costs, staffing levels and a breakeven point. When asked about capacity building and whether there an ideal number of enrollees exists, almost all hospices said that staffing is more influenced by the number and type of required

services rather than the number of enrolled children.

cost containment

When asked about capacity building and staffing needs, hospices often raised the subject of reimbursement rates and cost containment. Hospice administrators would like the opportunity to discuss

practical issues surrounding staffing, capacity building, and cost containment with each other and with the PIC:TFK Program Director. Two hospices recommend incorporating more opportunities for the hospice administrators to discuss billing processes at the 2008 Statewide meeting.

As non-profit organizations, all hospices are vocal in their support of the PIC:TFK program regardless of whether they are currently operating at a profit or loss. Many of the hospices would like to increase their PIC:TFK services further but first need to consider whether this is feasible given the reimbursement rates. Some hospices have started to forecast maximum sustainable patient census.

service Provision

Table 7 shows which services children are receiving in the PIC:TFK program. All hospices

Staffing

“Some of our initial struggles were that the small number of children made it difficult to staff the program, we did not have enough children to bring on full-time staff and we were using staff form other teams, which was a fine balancing act. The hardest part was the staffing issues… It is important to understand the types of services that families will need and be able to predict with some degree of accuracy the respite hours and days and the frequency of use to ensure that you have an adequate staff to provide these services.”

“Specifically what this program calls for is quality care for the entire family. It’s not identifying a child as a patient but identifying a family as a client system. You could have a program that only has 10 clients but each of those clients has siblings who are receiving therapies and the parents might need supportive counseling or advocacy, assistance and education…you could truly spend a variable amount of time providing any, or all of these services. It’s hard to say what the maximum number of enrollment could be.”

Cost Containment

“Can this program be substantiated in the long term? “It would depend on the need of the child, certain services can be costly to provide. You may need to look at types of services rather than the number of children. You might need to make a certain number of visits to cover a home health aide for instance.”

“We have to show that based on our services, how much Medicaid is able to cover, projecting out visits, and decide how much we can take on. If we con-tinue to have Statewide meetings I would like to see more discussion on just cost, cost containment, cost efficiency….One of the questions I have is can we say no (to more enrollments)?”

“At the very least we have to be revenue neutral. We can do a number of things process wise with our staff – we have a number of expressive therapy staff that we borrow from hospice to provide these services…I think we need to have some alternatives from a very low cost perspective or volunteer perspective to do some of these supportive services.. We also need to empower the families to help them to do what they need to do, teach them to do some of these things themselves, or find additional resources out in the community to do it.”


pg 27


offered support counseling, in home respite, physician consultations for pain and symptom control, volunteer services, and bereavement services.

Two hospices have a registered activity therapist who is qualified to provide services under billing code G0176UB. One of these hospices report that this is the most requested service and “provides a unique and creative support system to the PIC:TFK families.” All hospices report that, where appropriate, their support counseling sessions involved the limited use of art, movement, and play techniques. One hospice would like to subcontract to an alternative therapist but could not find a local credentialed provider who was willing to accept the Medicaid reimbursement rate. One hospice reports that their counselor was taking coursework to become a registered therapist and another reports that they are looking to hire a registered activity therapist in early 2008.

Currently two of the six hospices with an inpatient facility offered inpatient respite as a service. The other four hospices reported that they could not admit non-hospice children to their inpatient unit for respite, per the hospice’s licensure. These hospices would like AHCA to respond whether regulations prevent all hospices from providing the inpatient respite to PIC:TFK children, and if so, whether there are alternatives.

Four hospices are able to provide in home respite services using their hospice staff, while two sites

subcontract out respite services. Of the four hospices utilizing their own hospice staff for respite, three report increasing their respite hours markedly over the last year. One hospice did not actively promote respite because of limited resources. The two hospices that subcontract out respite services provide comparatively fewer respite hours, partly because of difficulties hiring skilled staff willing to accept the Medicaid reimbursement rate.

In terms of care delivery, some hospices found scheduling respite to be challenging because many families request respite at the same time (weekends and holidays). Hospices are following the PIC:TFK guidelines and mainly sending home health aides for respite, but LPNs and RNs are utilized if the children require higher level medical services. Two hospices remark that they would like to see the maximum number of hours of respite care increased.

Table 7 Available PIC:TFK Services

PIC:TFK Service Billing Code Hospice Site

1 2 3 4 5 6

Support counseling 99510UB X X X X X X

Activity therapy (with a registered or Board certified therapist)

G0176UB - - X X - -

Inpatient respite H0045UB - - X - - -

In home respite by RN S9125UB-TD X a - X X a

In home respite by LPN S9125UB-TE X a - X X X

In home respite by HHA/CAN S9125UB X X X X X a

Hospice nursing care S9123UB X a X X X X

Hospice personal care S9122UB X - X X X a

Physician consultation for pain and symptom control

UB-04 form X X X X X X

Volunteer services X X X X X X

Bereavement services X X X X X X

Other (e.g. Chaplain, Massage Therapist)

X X

Respite

“Medicaid reimbursement rate, especially for respite care, has made it almost impossible for us to provide the higher level of skilled nursing care.”

“Respite is very difficult to fill from a skilled level, it’s not difficult for me to obtain CNAs, home-health aides, that level of care, but for children who need a RN or a LPN, or that level of care, no-one wants to take what Medicaid are paying, and it’s definitely punishing the families who need it the most.”

“Require clarification for hospices who do not have home health licenses on what limits, if any, they may have in regard to providing actual hands-on nursing care, to include in-home respite care by RN/LPN/CAN and hospice nursing care.”

a: service is available but is not utilized

pg 28

Initially, many hospices were confused as to which situations constituted a billable nursing or personal care visit. One hospice remarked that the PIC:TFK guidelines are ambiguous as to their definition of nursing care. This hospice is also unsure whether to bill for a reassessment visit to determine whether the child requires nursing care, or whether this follow-up visit is a non billable service. All hospices now have a better understanding that the nursing and personal care services are more consultative in nature and aim to supplement existing CMSN services.

“Initially, it was very difficult to understand the purpose of the PIC:TFK program …I think one of the gains we’ve made is understanding that CMSN can provide a level of nursing care that we can’t and that we are supplemental. We can bring our nursing expertise when there is some change in their disease process. We add on to the medical services being provided through CMSN case management.”

Hospices are also providing many value added services to the PIC:TFK enrollees22. Two hospices have transitional programs for children over the age of 21 years. One hospice is introducing a teen volunteer program that will provide peer support.

systemic challenges A number of service provision and reimbursement issues were repeatedly mentioned during the site visits. These issues might be beyond the control of the PIC:TFK

Program Director and CMSN and AHCA headquarters, however they are highlighted here to show some of the pressures facing the hospice sites and to initiate further discussion. The hospices recognize that amending the Waiver is a lengthy and involved process, but sites would like representation in policy decisions and/or progress updates.

Four of the hospices comment that they would like to widen the basket of PIC:TFK services. They would like CMSN and AHCA headquarters to investigate the possibility of reimbursement for the following services:

• Bereavement services;

• Services to the family when the child is hospitalized;

• Increased reimbursement rates to reflect the cost of rising salaries; and,

• Travel time and mileage to client’s home.

Hospices understood that it was not possible to be reimbursed for any services provided to the child while in the hospital. Hospices, however, request that CMSN and AHCA headquarters investigate allowing services to be provided to family members while the child is hospitalized. Again, even if change in these areas is beyond the control of CMSN and AHCA, they are points that the hospices would appreciate further discussion.

Basket of Services

“When that child is hospitalized, why can’t other PIC:TFK services be pro-vided to other family members, as long as we can show that the services are being given in a place other than the hospital?”

“When our children are hospitalized- that’s time when they need lots of sup-port and counseling but we can’t bill for it. We are stuck between doing the right thing – which we do - but that’s non billable time for us.“

Therapeutic Necessity

“When hospices provide services over a very wide area a significant portion of time is going to be spent traveling to the families homes. We pay our staff the mileage but this is a cost we eat in support of the program. In adult hospice we are reimbursed on a per diem basis to cover all costs associated with care, travel, medications, DME etc…“Many of our families have very basic unmet needs and it is difficult to provide counseling without first meeting basic needs. Some of their unmet needs could be a lack of water, money, food, dia-pers, housing. There are sometimes many challenges to address before we can even get to the therapeutic part. We have gotten good at setting boundar-ies and giving our resources, however we can not be reimbursed unless it is a therapeutic visit. The social worker may spend 2-3 hours simply helping this family getting their basic needs met. It may be time spent on the phone, or trying to coordinate with community resources.”


pg 29


Several hospices request that headquarters investigate amending the Waiver to include reimbursement for bereavement services. Hospices are aware that there may be some restrictions on the length and frequency of reimbursable bereavement services, but would prefer some payment rather than none. The hospices have been tracking their bereavement hours for the past two years, as directed by CMSN and AHCA, and hoped that bereavement would have been added to the list of services when the Waiver was renewed in 2007.

Lastly, two hospices suggest receiving reimbursement for time spent travelling to homes, meetings, and coordinating resources with other service providers. Currently PIC:TFK services are only reimbursable for visits where staff could justify therapeutic benefit and met the guidelines criteria.

lessons learned

All hospices had suggestions for new sites joining the PIC:TFK program, including:

1. Interdisciplinary meetings are helpful.

2. Do your program planning (building forms, policies and procedures) first. Build the infrastructure before you begin the program, otherwise it is difficult to go back and fix it.

3. Communication is essential. Keep in constant contact with the CMSN representative and share information as needed.

4. Build relationships with CMSN sooner rather than later.

5. Educate all staff on pediatric needs, dynamics, including areas of grief and loss.

6. Work closely with your accounting or fiscal departments to ensure billing issues do not escalate. Have them involved in planning meetings as appropriate.

7. Get to know the CMSN system and infrastructure so you can understand their point of view and the client’s experience.

8. Attend some of the client clinic days at CMSN and shadow the CMSN nurses

9. Be patient with the CMSN system. It can be challenging with some of its bureaucracy which as a hospice we may not always have.

Lessons Learned

“There was so much passion behind the program but the infrastructure wasn’t there initially. ….At the beginning I was frustrated …I have shifted my position now and I love the program, the program has been amazing, I love working with the nurses, it’s been a wonderful experience and we want to be a part of it, we want to support it… I just want some direction and definitely one of the areas is in reimbursement.”

“The program was conceived well but how does that translate into implemen-tation? There were a lot of inconsistencies.”

“It’s important that you build systems that sustain any of us, and if we were all to leave tomorrow, you don’t want the program to crumble.”

pg 30

A survey was also completed by one of the new sites23. The survey results are reported separately from the six established PIC:TFK sites for two main reasons. First, at the time of writing this report, the new site was waiting for federal approval to be included in the 1915(b) Medicaid waiver program and become an official PIC:TFK site. Therefore it is difficult for the new site to comment on several areas of the program where they have no experience. Second, the new site is currently facing different issues than the established sites that are focused more on program implementation than operations.

CMSN staff at the new site report similar challenges to the existing sites during their program implementation phase in 2005-200624. CMSN staff report that an initial challenge was for the nurse care coordinators to understand the PIC:TFK program and how best to approach families about joining a pediatric palliative care program. Most nurse care coordinators reported feeling comfortable explaining the benefits of the program, and how it differs from a traditional hospice model. Further challenges were getting buy in from the PCPs and establishing a PCP champion in the community.

Program representatives from both agencies report holding interdisciplinary team meetings every two weeks, as well as more frequent phone contact if necessary to discuss changes to a child’s plan of care. Both partners have also begun to formally clarify roles of individual staff members and how

to convey this clearly to families. All CMSN staff also participated in a training session with the PIC:TFK Program Director, which they found helpful in furthering their understanding of the PIC:TFK program.

Hospice survey responses indicate that the hospice is in adherence with applicable PIC:TFK guidelines and have plans to undertake further quality assurance activities once the program is more established. Hospice staff has begun educational programs with their PCPs, specialists, and hospital doctors and also have a transitional program for children who reach the age of 21. The hospice reports that their medical director is very supportive and that the PIC:TFK Program Director has been responsive, but that they are waiting for the waiver issues to be resolved before the program can be further expanded.

The new site suggests that a mentoring program should be considered for all new PIC:TFK sites. Staff commented that it would be very helpful to spend a day with staff from an established PIC:TFK site to better understand the roles and responsibilities.

At A Glance

During the implementation

phase, a new site will face staffing,

educational, and enrollment

challenges

Established sites should be

encouraged to share best

practices with new PIC:TFK sites

New sites suggest the establishment of a mentorship

program

8 Survey of New Site

pg 31


As part of the IA, the Institute conducted surveys with parents in PIC:TFK. In total, 85 PIC:TFK parents completed the survey, this is a 32% increase in the response rate from 2006-2007. The overall response rate for this survey is 40% of those with valid contact information. Approximately 20% of the sample has missing or invalid information. Results for the parent survey are presented below by section.

demograPhics

Of the 85 parent respondents whose children are enrolled in the PIC:TFK program, the mean age is 39 with a standard deviation of 15.4 years. Fifty-six percent of parents are White, 19% Black, and 21% Hispanic, and 4% other races. The PIC:TFK parents report that 47% of their children are White, 27% Black,

and 22% Hispanic. The prevailing ethnicities of the Hispanic children are Mexican -American and Puerto Rican.

More PIC:TFK parents have some college (63%) than only a high school diploma (20%), while 17% have not graduated from high school. Fifty-four percent are married, 22% are single, and 11% are divorced. Sixty percent live in a two-parent household and 40% a single-parent household. The majority of PIC:TFK parents (80%) speak English at home. Forty-three percent of PIC:TFK children are non-verbal and 49% speak English at home, while 6% speak Spanish.

As seen in Figure 6, 70% of PIC:TFK children are in school or daycare while 62% have a

sibling. More PIC:TFK parents of males (53%) than females (47%) responded to the survey.

Pic:tFk satisFaction and exPeriences

This section of the survey asked specific questions about the respondents’ experiences and satisfaction with the PIC:TFK program. The goal for the evaluation of parents’ experiences is to identify strengths and weaknesses in the program so that improvements can be made and best practices acknowledged. However, to do so, programmatic and site level feedback is needed. In this report, results are presented by program and site. The site number assignment is identical to the numbers assigned in the CMSN and hospice survey sections of the report. A site key has been provided to CMSN and AHCA headquarters, but is not provided in this report due to privacy concerns. Figure 7 shows the number of survey respondents by site25. It should be noted that the stratified results should be interpreted with caution since the sample sizes across the sites are small. Furthermore, stratified responses for Sites 2 and 8 will not be presented in this report due to the low number of survey respondents.

Parents were first asked how they learned about the PIC:TFK program. As shown in Table 8, three quarters of parents indicated that the responsible party was the nurse care coordinator. Respondents often learned about the program from more than one source.

9 Parent Surveys

Figure 6 Percentage of Children in PIC:TFK: In School or Day Care, With Siblings, and Gender

70%62%

53%

0%

20%

40%

60%

80%

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In School/Daycare Has Brothers/Sisters Male

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Overall Characteristics

Figure 7 Number of Survey Respondents, By Site

12

2

21

1618

12

4

0

5

10

15

20

Site 1 Site 2 Site 3 Site 4 Site 5 Site 6 Site 8

Num

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Number of Survey Respondents

pg 32

Next, respondents were asked if they were given a list or were told about the PIC:TFK services available for their children. Figure 8 shows that about 15% of parents did not recall receiving a list or being told about the PIC:TFK services.

Figure 9 shows the amount of time from when the child was invited to participate in PIC:TFK to when the child received services. At 2 sites more than 50% of the parents report having received a service within 2 weeks.

It is important to note that sometimes the timing of service provision may be at the request of the parents. Parents may have scheduling issues that prevent them from having services provided in

a short time period. Therefore, parents were asked if the length of time from invitation to the receipt of services was due to:

• Personal choice,

• PIC:TFK program not contacting them in the appropriate time period,

• PIC:TFK contacted them, but could not provide any services,

• Other.

The percentage of parents who report that this time period was due to personal choice is:

• Site 1: 13%,

• Site 3: 17%,

• Site 4: 30%,

• Site 5: 0%, and

• Site 6: 29%.

Parents were next asked about what PIC;TFK services their children had received. Table 9 shows parental reports of children’s service usage, across all sites26. Between 42% and 58% of children are receiving support counseling27. Parents also report high use of music, art and play therapy sessions; however it is unclear from the parent report data whether these modalities are delivered as part of the support counseling session or separately by a licensed therapist.

Table 8 How Respondents Learned about the Program, By Site

Overall Site 1 Site 3 Site 4 Site 5 Site 6 Nurse care coordinator 75% 83% 81% 81% 67% 67% Provider 21% 42% 14% 31% 17% 8% Brochure 7% 8% 5% 13% 11% 0% Friend or family member 8% 17% 10% 13% 6% 0% Social service agency 17% 17% 14% 0% 44% 0% Hospital 17% 17% 5% 19% 33% 8% Internet 5% 17% 0% 6% 6% 0%

Table 9 Percentage of Parents who Report their Children Have Received a Service, By Site

Overall Site 1 Site 3 Site 4 Site 5 Site 6 Support Counseling 52% 58% 62% 50% 44% 42%

Personal Care 31% 42% 33% 6% 33% 42%

Nursing Care 57% 58% 71% 25% 67% 33%

Music Therapy 41% 17% 67% 88% 22% 8%

Art Therapy 27% 25% 19% 13% 17% 8%

Play Therapy 26% 25% 19% 19% 33% 25%

Figure 8 Received a List or Were Told About PIC:TFK Services During Enrollment, By Site

85% 92% 90%81% 81% 82%

0%

20%

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60%

80%

100%

Overall Site 1 Site 3 Site 4 Site 5 Site 6

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Did Receive a List

Figure 9 Time Frame of Receipt of a PIC:TFK Service After Being Invited to Participate, By Site

45%33%

59%

19%

77%

27%15%

25%

6%

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50%

8%

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2 Weeks >2 Weeks, <1 Month >1 Month

9 | Parent Surveys

pg 33


Four parents reported that their children have received no PIC:TFK services, these children are enrolled in Site 1 (1 parent) and Site 6 (3 parents).

Parents were asked what family members, other than their children enrolled in PIC:TFK, received any PIC:TFK services. One-third of parents responded that none of the other family members used any PIC:TFK services28. For the two-thirds of parents who report that family members did

utilize a PIC:TFK service, parents were then asked what services were used. Table 10 shows the number of parents who report that a service was used by another family member by type of service. It is important to note that these numbers can not be converted to a percentage of family members who used the service since the survey data does not include the total number of family members. The results show that family members used more counseling than any other service and fewer art therapy services.

Parents were asked a series of questions about their satisfaction with the PIC:TFK program. Figure 10 shows that most parents are very satisfied to satisfied with the program benefits.

Ninety-five percent of respondents overall would recommend the program to a family member or friend. At four sites, one parent indicated that they would not recommend the program to a family member or friend. Only one PIC:TFK parent has made a complaint with CMSN. When asked about the quality of care their child receives in PIC:TFK, 65% overall indicated that the quality is excellent or very good (Figure 11).

When asked what services parents would like to see covered that are not already included, parents responded (numbers of parents who responded in parenthesis):

• Babysitting services/child care (4)

• Transportation (2)

• Support groups (2)

• Occupational therapy (3)

• Respite care (5)

• Speech therapy (2)

• Physical therapy (3)

• Massage therapy (2)

• Diapers (2)

• Play therapy (2)

Figure 12 shows that most parents are very satisfied to satisfied with their PIC:TFK nurse or therapist, with Sites 4 and 5 having the highest levels of satisfaction and Site 6 having the lowest.

Table 10 Number of Services that Parents Report their Family Members Have Received, By Site

Overall Site 1 Site 3 Site 4 Site 5 Site 6 Support Counseling 35 5 6 10 9 3 Music Therapy 8 0 3 4 1 0 Art Therapy 5 1 2 0 1 0 Play Therapy 6 1 1 3 0 0 Respite 23 4 2 6 4 3 Volunteer Services 15 1 5 1 6 1 No Services 35 5 11 5 7 6

Figure 10 Very Satisfied to Satisfied with PIC:TFK Benefits, By Site

83%67%

80%94% 88%

75%

0%

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100%


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Satisfaction with Benefits

Figure 11 Parent Report of Overall Quality of Care, By Site

65% 60% 55%68%

81%

41%30%

20%

39%31%

12%

50%

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6% 0% 6% 8%

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Excellent to Very Good Good Fair to Poor

pg 34

cahPs

Results from the CAHPS Composite Scores are described in this section. Results from the individual items for the CAHPS and all other survey sections can be found in the technical appendix that accompanies this report. Composite scoring combines the responses of similarly-themed questions. For example, individual items related to care coordination are grouped according to the developer’s instructions and scored on a scale of 0 to 100, with 100 being the highest.

CAHPS Composite Scores were calculated for: family-centered health care - personal doctor, family-centered health care - shared decision making, family-centered health care - getting needed information, and doctor communication. PIC:TFK parents responded with an average composite score of 86 for doctor communication, 87 for their personal doctor or nurse, 89 for shared decision making, and 85 for getting needed information (Figure 13).

Although not included in the CAHPS composites, respondents were also asked to rate their overall healthcare on a scale of 0 to 10, with 10 being the highest. PIC:TFK parents gave their child’s healthcare a mean score of 7.91 (standard deviation 3.6).

PedsQl generic assessment

The composite scores for the PedsQL Generic Scale are contained in this section and are not broken down by site due to the formulary for calculating the

composites. The PedsQL Generic Scale has the following domains: physical, emotional, social, and school functioning. Figure 14 shows that the PIC:TFK children scored highest on emotional and lowest on physical functioning.

center For ePidemiologic studies dePression (ces-d) scale

Scores greater than or equal to 16 on the CES-D indicate the presence of current depressive symptoms. Of the PIC:TFK respondents, 50 scored greater than or equal to 16 (59%) and their mean score was 21.3 (standard deviation 9.5). This information can be used to document the need for supportive and counseling services for parents whose children have life-limiting illnesses. In addition, this information is important for future evaluations. Studies have shown that parents with depression tend to rate their children’s HRQOL lower than parents without depression. When we have sufficient data, we will use the parents’ CES-D scores as a control variable when assessing the impact of the program on children’s HRQOL.

imPact on Family scale

The Impact on Family Scale was developed to measure the impact of a child’s illness on the family. A higher total score on the Impact on Family Scale is indicative of larger effects. Parents in the survey reported a total score of 68. Results are higher than other studies of chronically ill children29, 30. Results from the individual items for the Impact on Family Scale can be found in the technical appendix that accompanies this report.

At a Glance

Parents report that 52% of children are

receiving support counseling

The majority of parents

recommend the program

(95%) and are very satisfied to satisfied with the PIC:TFK nurse

or therapist (85%)

9 | Parent Surveys

pg 35


Figure 13 CAHPS Composite Scores

86 87 89 85

020406080

100

Doctor Communication Family Centered Care-Personal Doctor

Family Centered Care-Shared Decision Making

Family Centered Care-Getting Needed

Information

Scor

e

CAHPS Composites

Figure 14 PedsQL Generic Composite Scores

41

6452 49

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Physical Emotional Social School

Scor

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Figure 12 Very Satisfied to Satisfied with PIC:TFK Nurse or Therapist, By Site

86%75%

84%93% 93%

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Satisfaction with Benefits

pg 36

A comparison group of children were identified to validate the use of several national survey instruments that the Institute has used as measures of satisfaction, shared decision making, and quality of life in the PIC:TFK surveys. Validation of survey instruments is important so that the results can be meaningfully interpreted in the context of the population. For example, previous research conducted by the Institute has shown that standard tools to measure parent’s involvement in decision making, such as the CAHPS, are not robust for use with a population of children with special health care needs (CSHCN). CAHPS items are not sensitive enough to capture variations in shared decision making. When parents were asked, “Did your doctor provide and discuss treatment options with you?” for example, the results showed that over 80% of the parents reported “Yes”. This finding may be in part due to the fact that the CAHPS instrument asks about general communication issues in medical care encounters and shared decision making process. However, this generic measure does not specifically ask whether patients and physicians discuss the uncertainty and side effects of treatment options, which is especially important for serving patients with life-limiting conditions.

As a result of this unexpected finding, the Institute was motivated to identify a comparison group for the PIC:TFK program and to use survey data garnered from that group to determine which instruments are more sensitive to a population of children with life-limiting illnesses. Two shared

decision making instruments besides the CAHPS are also being analyzed: 1) the Decisional Conflict Scale (DCS) which measures uncertainty in making a choice among treatment options and 2) the Combined Outcome Measure for Risk Communication and Treatment Decision Making Effectiveness (COMRADE) which measures risk communication and decision effectiveness.

Data from the comparison group will also be used to assess the validity of the parent’s report of pediatric health-related quality of life using the PedsQL 4.0 for this population.

Validating the PedsQL, CAHPS shared decision making, COMRADE, and DCS scales requires a dataset of at least 230 completed surveys31. Given the enrollment of the PIC:TFK program and the historical response rate of surveying this population, the Institute used a comparison group in order to reach a target of 230 completed parent surveys statewide. Children included in the comparison group have life-limiting conditions similar to the diagnoses that children in the PIC:TFK program have, live outside of a PIC:TFK catchment area, and are enrolled in Medicaid and CMSN. In addition to the 230 surveys that test the 4 standardized instruments, an additional 20 parents will be asked a short series of open ended questions about their perceptions of quality of life. This collection of qualitative data will provide evidence to determine if the PedsQL is missing domains of quality of life that are important to this population. The interviews

10 Parent Surveys of Comparison Childrenare being conducted by telephone in both English and Spanish.

Once the data are collected, the research team will examine the psychometric properties of the DCS, the COMRADE, and the PedsQL measures. Psychometric properties include reliability, construct validity, and known-group validity. For scale reliability, Cronbach’s alpha coefficients will be used to estimate the internal consistency of the instruments. For construct validity, exploratory factor analysis will be used to examine the constructs of the DCS, the COMRADE, and the PedsQL instruments. An iterated principal factor approach will be used for all items of the DCS, the COMRADE, and the PedsQL instruments.

Results from the validity study will have important programmatic and evaluation implications for the PIC:TFK program. The findings on shared decision making measures will help the PIC:TFK program to identify problems in patient-provider communication and design better strategies to improve the communication process. Findings from the instrument validation will be used to refine the evaluation and make the results more meaningful in the future.

As of the writing of this report, 195 comparison surveys have been completed. It is expected that the targeted number of completed surveys will be reached by March 2008.

pg 37


The cost patterns are presented in this section of the report by service type. The findings are presented for calendar year 2006 however a few caveats should be mentioned. First, the cost patterns were most likely affected by problems that the hospices had with billing early in the program’s implementation. Several hospices did not get reimbursed for services because they missed the 12 month window of reimbursement. Billing problems were identified and addressed by the PIC:TFK Program Director in FY 2006-2007. Nonetheless, the results will be skewed. Second, only cost data for children eligible for Title XIX are available. Approximately 90% of the PIC:TFK enrollees are Medicaid eligible, however, the data presented do not depict costs for Title XXI and Safety-Net eligible children. Finally, there is a lag between the period of time when claims are processed by AHCA and when they are transmitted to the Institute. This is also true of adjudicated claims and denied claims. Therefore, the Institute is not yet able to duplicate Table 11 for costs incurred in calendar year 2007. No physician home visit or inpatient respite claims were billed during the study period.

Beyond cost patterns of the PIC:TFK services, it is also important to determine if the PIC:TFK program has an effect on cost patterns for other aspects of health care for the children enrolled in PIC:TFK. For example, although the PIC:TFK program primarily provides supportive care to children and their families, the program may have a spillover effect on incidence of inpatient admission. If families

feel that the pain and symptom management of their children’s needs can be met at home through the PIC:TFK nurses and physicians, they may have fewer inpatient admissions. Therefore, the Institute queried the Title XIX claims and encounter database and determined the average inpatient, outpatient, emergency department, pharmacy, and total costs 12 months prior to enrollment in PIC:TFK and 12 months after enrollment in PIC:TFK. Table 12 presents the average costs pre and post program enrollment, as well as the average difference.

The reader should be cautioned when interpreting these results for several reasons. First, the claims and encounter data only reflect the Title XIX costs. Second, in order to perform the analysis, only children who had been enrolled for at least 12 months pre and post PIC:TFK enrollment could be included in the sample, resulting in a final

sample of 61 children. Third, these differences only represent the average change across the study period (24 months) and do not control for child level characteristics that may influence expenditure patterns. As more children reach the 1 year enrollment benchmark in the program this will provide more observation points to conduct a more sophisticated analysis that would account for additional predisposing factors that influence expenditures (race, gender, stage of illness, etc). Results presented in Table 12 are provided for descriptive information only and should not be interpreted otherwise.

Of the 61 children who met the inclusion requirements for the cost study, the results show that average yearly inpatient costs fell after enrollment in PIC:TFK and emergency department, pharmacy, and outpatient costs increased. However, the cumulative effect was a decrease in total costs of about $4,00032.

11 Cost Patterns

Total Cost Number of Children Served

Average Cost per Child

Support Counseling $23,328 110 $212 Nursing Care $14,391 47 $306 Activity Therapy $7,630 36 $211 Bereavement* $940 11 $85 In-Home Respite RN $1,658 3 $552 In-Home Respite LPN $8,108 8 $1,013 Personal Care $1,554 3 $518 Total Cost $57,609 112 $514

Table 11 Cost by Service Type, January 2006 to December 2006

Average Yearly Costs

Pre PIC:TFK

Average Yearly Costs

Post PIC:TFK

Average Yearly Cost Difference Pre and

Post PIC:TFK Inpatient $25,347 $11,574 ($13,901) Outpatient $48,242 $57,472 $9,641 Emergency Department $464 $483 $23 Pharmacy $14,973 $18,614 $3,823 Total Costs $84,744 $80,421 ($4,091)

Table 12 Average Yearly Costs Pre and Post Implementation by Service Category

pg 38

The Institute for Child Health Policy is making several recommendations for the PIC:TFK program. It is important to note that this is a complex and novel program in its third year of operation. Much has been accomplished as evidenced by the establishment of sites with multiple program partners (CMSN Area Offices, Medical Directors, the provider community, and the families), parental reports of positive experiences with the program, and standardization of many program policies and procedures. However, due to the newness and the complexity of the program, there are several areas for improvement. The recommendations made should be viewed in the context that this is a new and novel program that is in its early phases of operation. The summary and conclusions for this report are aligned with the major sections.

enrollment trends

As of January 2008, 468 children had enrolled in the PIC:TFK program. Adjusting the enrollment numbers to account for the number of children who have subsequently disenrolled, results in 298 actively enrolled children as of January 2008. This represents about one-third of the funded Title XIX program slots. Each site continues to enroll children, with several sites growing by more than 50 percentage points since June 2007. There were several reasons for increased enrollment during the 2007-2008 contract period. First, the sites worked hard in identifying, contacting,

and enrolling children in their catchment areas. Second, the PIC:TFK Program Director held an annual statewide meeting in March 2007 in central Florida. Representatives from each site discussed enrollment barriers and discussed strategies to increase enrollment. Third, the PIC:TFK Program Director conducted site visits and training to further address those barriers. Training is helpful to educate the CMSN nurse care coordinators on the concept and operations of the program which in turn should lead to more enrollments. Fourth, the PIC:TFK Program Director held monthly technical assistance calls where sites could seek additional help for enrollment. Fifth, the Institute produced a non-biased potential enrollee list for the sites to help them identify children for enrollment. Finally, once enrollments hit a critical level the hospices were able to hire more staff, in turn leading to more enrollments.

Identifying children for the program is complex because CMSN nurse care coordinators have large caseloads and enrollment for PIC:TFK must be considered on a case by case basis. In addition, the CMSN nurse care coordinators have different perspectives about when palliative care is necessary. These issues should be taken into consideration when reading the recommendations.

The Institute recommends the following to increase enrollment:

• The PIC:TFK Steering Committee should discuss diagnoses that CMSN and hospice do not feel

are appropriate for enrollment, and why.

• Identify methods that sites with the highest enrollment numbers are using to enroll children and share those with the larger group.

• Provide additional technical assistance to site with low enrollment numbers.

• Given the large number of children that disenrolled from the program, CMSN should gather more information from the sites to understand why children are being disenrolled for reasons such as met program goals or family no longer wants services.

• Identify the reasons that some sites have disenrolled more children than others and provide technical assistance accordingly.

Potential list Overall, the quarterly potential list has been less successful than anticipated. Although the introduction of the potential list coincided with a 50% increase in enrollment between June 2007 and January 2008, less than half of these new enrollments were identified using the potential list.

With the exception of Ft. Myers, the other five sites were not able to enroll more than 5% of children on their potential lists. Sites report that upwards of 80% of children on their list are not eligible for enrollment, citing inappropriate diagnoses, family disinterest, or child lacking CMSN coverage as reasons for non enrollment.

12 Summary And

Recommendations

pg 39

Partners in Care Together for Kids | 2007 - 200812 | Summary And Recommendations

On-site interviews reveal that CMSN staff has mixed reactions to the introduction of the potential list. Indirectly, the potential list may have boosted enrollment by encouraging the nurse care coordinators to monitor their caseloads more closely for potentially eligible children. However, this small contribution to enrollment should be weighed against the increased work demands that the potential list places on the CMSN staff.

The Institute recommends the following in regard to the potential enrollment list:

• Discontinue the potential list based on the return on investment of time to enrolled children.

• Investigate whether AHCA can query the claims and encounter data directly and provide a potential enrollment list to CMSN that will be more up to date. This will reduce the workload associated with checking the enrollment status of all children on the list due to the lag in the Institute’s claims.

• Steering Committee should review which diagnoses might be excluded from the potential list based on the feedback from the sites.

hosPice and cmsn survey In the last year, sites report that strengthened relationships between CMSN and hospice. As enrollment has grown, hospices have established core staff for the PIC:TFK program, ameliorating some of the initial struggles that

hospices reported in trying to staff the whole spectrum of PIC:TFK services.

Both partners report a greater understanding of their partnering agency’s operations and their separate roles and responsibilities. The program has become part of the CMSN organizational culture and the CMSN care coordinators are starting to understand the program concepts and how it can benefit children on their caseload. However, hospices report that there is still room for improvement in the types of PIC:TFK referrals and that the CMSN care coordinators should look more broadly at the families’ needs rather than focusing solely on ill children.

The CMSN sites now report feeling more comfortable discussing the program with families and primary care physicians. Some sites are still experiencing a lack of buy-in from families and PCPs, especially in areas where there are other competing community resources. As families start receiving services, and PCPs start seeing a benefit to the families, these issues appear to dissipate.

All sites report increased support from CMSN headquarters in the last year. Both partnering agencies appreciated the opportunity to network with other sites at the Statewide meeting, and clarify issues with the PIC:TFK Program Director. Sites felt that the technical calls were falling short of their potential. Sites suggest either segregating the calls or introducing

a system where staff could email their questions in anonymously ahead of time and the PIC:TFK Program Director can answer these questions during the call.

Some sites were frustrated at the lack of infrastructure initially, and welcomed the introduction of standardized forms. However, CMSN offices felt that the new documentation requirements may be unmanageable without dedicated staff, and request more administrative support and additional resources from CMSN headquarters. Some CMSN offices also want flexibility to deviate from the PIC:TFK guidelines to meet their local needs, and request that the requirement to complete the palliative care curriculum be reviewed.

Conducting separate site visits revealed that the hospice and CMSN partners face very different challenges. Hospices would like the training package to be expanded to address service provision issues such as staffing, sustainability and service limits.

The site visits revealed that the primary concerns facing CMSN and hospice are workload issues and reimbursement rates/service limits, respectively. Both of these areas might be out of the statutory authority of CMSN and AHCA headquarters, however sites are requesting more discussion about PIC:TFK policies and procedures and greater representation in policy decisions.

pg 40

The Institute recommends the following options in regard to the CMSN and hospice survey results:

• CMSN should discuss funding options with the sites. Even if it is beyond the scope of the program to raise reimbursement rates or increase FTE, CMSN should discuss with the sites strategies to help alleviate issues related to costs and workload.

• CMSN should institute a formal mentorship program whereby new sites can gain insights into successful program implementation and operational strategies, by working with an established site. The Steering Committee should set guidelines or standardizations on what the mentorship program should entail.

• The Steering Committee should consider setting up a similar program whereby sites who are struggling with operational or enrollment challenges could be paired with sites who have demonstrated success in these areas.

• The Steering Committee should discuss the requirement that pediatric palliative care curricula, such as ELNEC, be required of the CMSN nurse care coordinators. The Steering Committee should consider other training alternatives such as developing a pediatric palliative care module that would be delivered by the PIC:TFK Program Director or requesting that the hospice provide pediatric palliative care training to the CMSN nurse care coordinators.

• The PIC:TFK Program Director should continue the monthly technical assistance calls, but try different approaches to get the sites to fully utilize the format such as targeted topics and requiring the sites to report in their progress and issues.

• Training provided by the PIC:TFK Program Director for the established hospices should evolve to be more focused on operations and less on the concept of palliative care.

• Given that some hospices felt that some of the PIC:TFK enrollments were inappropriate, CMSN should investigate why and if hospices should have input into the enrollment decision.

• Some hospice partners have developed models to predict staffing needs and service usage. CMSN should act as a conduit for this information to be shared with the other hospices.

• CMSN should discuss with the hospices what will occur when they reach a critical mass of enrollees and are unable to take on anymore enrollees.

• AHCA should respond to a request for clarification of the reimbursement rules related to inpatient respite as hospices are divided on whether or not they can use this service.

• AHCA should consider adding bereavement services to the 1915(b) waiver.

• Hospices should annually perform in-services to CMSN staff.

Parent survey results

The parent surveys show that the majority of PIC:TFK families (83%) were very satisfied or satisfied with the program benefits and 65% report the overall quality of care to be excellent to very good. Furthermore, high percentages of parents report being vary satisfied to satisfied with their PIC:TFK hospice nurse or therapist (86%).

Overall, PIC:TFK children primarily received support counseling (52%) and nursing care (57%), while more family members received support counseling and in home respite. Two-thirds of parents report that family members received one or more PIC:TFK service(s).

The survey was revised this year to include a new version of the CAHPS (4.0) and a shortened form of the IOF scale. The reader is cautioned against making direct comparisons to last year’s CAHPS and IOF results.

Results from the CAHPS composites show that parents in PIC:TFK rated their shared decision making (89), doctor communication (86), and personal doctor (87) about the same. However, the getting needed information composite was lower (85). These scores indicate that families have positive health care experiences with their children’s providers in these areas.

pg 41


Results from the PedsQL Generic Composite Scores are consistent with the program inclusion criteria whereby PIC:TFK parents rated their children’s HRQOL lowest for physical functioning (41). However, parents rated their children emotional (64) functioning highest.

Using the Impact on Family Scale, parents report financial strain, loss of work, and disrupted relationships with their other children due to their sick child. These results emphasize the need for support counseling and for all family members.

The Institute recommends the following in regard to the parent survey results:

• The PIC:TFK sites should continue to perform updates on their enrollment files. About 20% of the phone numbers were out of date or non-working. Given that the hospice personnel work with these families on a more frequent basis, we recommend that the CMSN and hospice personnel work together to keep the CMSN records up to date.

• Several PIC:TFK parents expressed an unmet need such as: massage therapy, play therapy (hospice was not providing this service), diapers, child care, and support groups. Hospices should consider if any of their volunteer services would help meet these needs.

• Parent surveys reveal that not all families receive a list of PIC:TFK services. One hundred

percent of families should be told about the services or have received a list of services.

• The survey should be revised to include separate questions for new enrollees versus established enrollees. This is important because as children remain in the program for longer time periods parents’ recall of what occurred when their children were first enrolled may decrease. Also, this will allow CMSN and AHCA to determine if enrollment procedures should be modified.

• There is wide variation in parent reported satisfaction across sites. CMSN should investigate if there are site specific strategies that lead to the higher satisfaction measures.

comParison survey The main purpose of the comparison study will be to validate whether or not the CAHPS, PedsQL, COMRADE, and DCS scales are valid for a population of children with life-limiting illnesses. Surveys are being conducted that will collect data from 230 families with similar diagnoses to the PIC:TFK enrolled children, but live outside the PIC:TFK catchment areas. A qualitative portion of the study will also determine if important quality of life domains are captured in the survey instruments. It is expected that the surveys will be completed in March 2008 and that an addendum to the report will be sent to AHCA and CMSN by June 30, 2008.

The Institute recommends the following in regard to the comparison survey:

• Study findings used to refine the evaluation, make the results more meaningful to CMSN, and identify the most reliable measures of satisfaction, quality, and shared decision making.

cost Patterns Analyzing the cost data for calendar year 2006 showed that the average cost per child in the PIC:TFK program for 2006 was $514 (includes 112 enrollees). For children who had been enrolled in Title XIX 12 months prior to their PIC:TFK enrollment and remained in PIC:TFK for at least 12 months, total costs decreased by $4,000 (includes 61 enrollees).

The Institute recommends the following in regard to cost patterns:

As more children reach the •point of 12 months continuous enrollment the cost analyses should control for child characteristics such as illness severity and/or disease trajectory. In addition, identifying a comparison group of children who are not participating in the program is essential.

12 | Summary And Recommendations

pg 42

FootnotesFor a history of the program leading up to implementation, see “Partners in Care Together for Kids 1.Implementation Guidelines: Operational Standards, Policies, and Protocols,” 2007.

As of the writing of this report, Sarasota has enrolled children into the program, but is waiting for federal 2.approval to be included in the 1915(b) waiver.

As of the writing of this report, Ft. Lauderdale has not enrolled any children in the program but is waiting for 3.federal approval to be included in the 1915(b) waiver.

For a history of the program leading up to implementation, see “Implementation Guidelines: Operational 4.Standards, Policies, and Protocols,” 2005.

www.chionline.org/programs/about.php (accessed Feb 2008).5.

Gainesville was a site from 2005-2007, but left the program in State FY 2007-2008.6.

This is a non-billable, but tracked service.7.

January 2008 was the most up to date enrollment file received at the time of the writing of this report.8.

US Agency for Healthcare Research and Quality. CAHPS Health Plan Survey 4.0: Child Medicaid 9.Questionnaire. Washington, DC: August 2007. https://www.cahps.ahrq.gov/default.asp

Stein, R. and Riessman, C. (1980) The Development of an Impact-on-Family Scale: Preliminary Findings. 10. Med Care Apr 18(4):465-72.

Varni, J.W., Seid, M. and Rode, C. (1999) The PedsQL: Measurement Model for the Pediatric Quality of Life. 11.Med Care Feb 37(2):126-39.

Stein R, Jessop DJ. The Impact on Family Scale Revisited: Further psychometric data. 12. J Dev Behav Pediatr. 2003;24 (1): 9–16.

Diagnoses are given using four digit International Classification of Diseases, 9th Revision codes (ICD-9).13.

Information on the 2005-2006 and 2006-2007 enrollment trends can be found in the Institute’s previous reports 14.that are available upon request.

Sarasota enrollments are not counted towards the total PIC:TFK enrollment figure, as Sarasota was not 15.formally operating as a PIC:TFK site at the time of writing this report.

A copy of the Potential List Data Protocol is available from the Institute on request.16.

Although the sites were issued with a Potential List Data Protocol in May 2007, many sites did not code the 17.enrollment status codes and non enrollment codes correctly or left codes blank. The Institute has recoded as necessary based on notations by the CMSN office staff.

Shenkman E, L. Tian, J. Nackashi, D. Schatz. (2005). Managed Care Organizational Characteristics and 18.Outpatient Specialty Use Among Children with Chronic Illness. Pediatrics 115(6):1-8.

Shenkman E, Wu S, Nackashi J, Sherman J. (2003). Managed Care Organizational Characteristics and the 19.Quality of Care for Children with Special Health Care Needs. Health Services Research. 38:1599-1624.

A copy of the SFY 2006-07 Partners in Care: Together for Kids annual report is available from the Institute 20.upon request.

There was a median of six children enrolled as hospice patients during this period.21.

For a full list of value added services please refer to the 2006-07 Partners in Care: Together for Kids annual 22.report.

The other new site was exempted from the survey.23.

The 2005-2006 PIC:TFK annual report is available from the authors on request.24.

pg 43


Site 7 left the program in FY 2007-2008 and therefore was not included in the parent survey.25.

Numbers add and exceed 100% since many clients used more than one service.26.

As a caveat, parent report data are not always as reliable as cost utilization data. 27.

Note that 2 sites are not included in the table so numbers do not add to overall figures.28.

Stein R, Riessman C. The Development of an Impact on Family Scale: Preliminary Findings. 29. Med Care. 1980 Apr; 18(4):465-72.

Gudmundsdottir H, Elklit A, Gudmundsdottir D. PTSD and psychological distress in Icelandic parents of 30.chronically ill children: Does social support have an effect on parental distress? Scand J Psychol. 2006; 47(4):303–312.

At least 10 responses are required per item and there are 23 unique items that will be tested.31.

$4,000 is the amount of savings in 2006 dollars. This figure has not been adjusted to reflect medical inflation 32.that may have occurred between 2006 and 2008.

Footnotes

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Children’s Medical Services Network Partners in Care ... › medicaid › Policy_and...of hospice care is inappropriate for a pediatric population. PIC:TFK is the first publicly-financed