Executive Summary...1. Section I Introduction...3

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2 TABLE OF CONTENTS Executive Summary...1 Section I Introduction...3 Section II Statewide Services Provided to Special Needs Children...5 Introduction... 5 Medicaid Services... 5 Children s Medical Services Network... 5 Neurological Injury Compensation Association Program... 7 Medicaid Programs and Services for Special Needs Children... 7 Regional Perinatal Intensive Care Centers Program... 8 Medicaid Neonatal Intensive Care... 9 Traumatic Brain Injury and Spinal Cord Injury (TBI/SCI) Waiver... 9 Services Offered Through the CMS Network Characteristics of Special Needs Beneficiaries Age Age Distribution of Children by Program and Service Cost Age Distribution for Non-Medicaid State Programs Race/Ethnicity County Comparisons of Service Utilization Costs of Services for Medically Complex Children Program and Service Funding Program and Service Costs Medicaid Services vs. Non-Medicaid Services Section III The Prescribed Pediatric Extended Care Program...19 Introduction Characteristics of PPEC Beneficiaries Age Length of Participation in the PPEC Program Race/Ethnic Composition Where are PPEC Beneficiaries Located? Residence of Medicaid Eligible Children Receiving PPEC Services Program Costs and Services Provided Under PPEC Program Comparisons Comparison of the PPEC Program and Developmental Services Waiver Program Comparison of Private Duty Nursing Services and PPEC Services Appendicies Appendix A: Description of Programs that Serve Medically Complex Children...31 Aged/Disabled Adult Waiver Developmental Services Waiver Model Waiver Project AIDs Care Waiver Traumatic Brain Injury/Spinal Cord Injury Waiver i

3 Appendix B: Description of Program Services Provided to Medically Complex Children...33 Durable Medical Equipment Medical Foster Care Nursing Facility Services Occupational Therapy Personal Care Physical Therapy Private Duty Nursing Respiratory Therapy Speech Language Pathology Appendix C: County Comparisons of Medicaid Services Utilization by Service, FY Durable Medical Equipment Services Developmental Services Waiver Services Occupational Therapy Services Private Duty Nursing Services Physical Therapy Services Regional Perinatal Intensive Care Centers Program Services Speech Language Pathology Services Appendix D: PPEC Enrollments by Florida County, Various s...37 PPEC Enrollments by Florida County, PPEC Enrollments by Florida County, PPEC Enrollments by Florida County, ii

4 List of Tables Table 2.1 Number of Medically Complex Children Receiving Selected Medicaid Services... 8 Table 2.2 Medically Fragile Children Served by Medicaid Programs, FY to FY Table 2.3 Medically Complex Children Served by CMS Programs, FY to FY Table 2.4 Special Needs Children Receiving Medicaid Services by Age, FY Table 2.5 Age of Beneficiaries for the Four Most Expensive Medicaid Services or Programs, Totaled for FY through FY Table 2.6 Medically Complex Children Receiving Title XXI Services by Age, FY Table 2.7 Racial/Ethnic Composition by Program, FY Table 2.8 Costs of Medicaid Programs and Services for Medically Complex Children Table 2.9 Table 2.10 Four Most Costly Medicaid Services to Medically Complex Children, FY to FY Costs of Medicaid Services for Medically Fragile Children, FY to FY Table 2.11 Costs of CMS Network Services, FY to FY Table 2.12 Comparisons of Children Enrolled in Medicaid and Non-Medicaid Programs, FY to FY Table 2.13 Total Costs for Children Enrolled in Medicaid and Non-Medicaid Programs Table 3.1 Annual Medicaid Caseload for Children Receiving PPEC Services Table 3.2 Number of PPEC Beneficiaries by Age Table 3.3 Percentage Change in the Number of Children in PPEC from FY to FY Table 3.4 Tracking the Children Enrolled in PPEC in FY Table 3.5 Race/Ethnicity of PPEC Beneficiaries, FY Table 3.6 Average Cost Per Person Per for PPEC Services Table 3.7 Other Medicaid Expenditures for PPEC Beneficiaries Table 3.8 Table 3.9 Number of Other Types of Medicaid Services Received by Children Enrolled in PPEC Medicaid Expenditures for Selected Services to Children Enrolled in PPEC, FY to FY Table 3.10 Comparison of the PPEC Program and Developmental Services Waiver Table 3.11 Comparison of Costs: PPEC and Private Duty Nursing Services iii

5 List of Figures Figure 2.1 Florida Eligibility for State Children s Services, FY Figure 2.6 Cost Comparison of the Four Most Costly Medicaid Services Figure 3.1 Racial Composition of PPEC Beneficiaries, FY Figure 3.2 PPEC Enrollments by Florida County, Figure 3.3 Residence of Children While Enrolled in PPEC Figure 3.4 Change in Total Costs of PPEC Services, FY to FY iv

6 Executive Summary Section 40 of House Bill 59-E requires the Agency for Health Care Administration to report on the status of Florida children with special needs who are medically complex and/or medically fragile. This report covers the period FY to FY and identifies: the ages of the children, the locations where the children are served, the types of services provided, the cost of services, and the funding source for services. The main distinction between children who are medically complex and children who are medically fragile is that those who are medically fragile need a higher level of service due to the need for life sustaining technologies or supervision. The report uses the term special needs when discussing both medically complex and medically fragile children together and uses medically complex or medically fragile when discussing each group separately. Section II of the report looks at special needs children statewide and encompasses all medically complex and fragile children identified through Florida Medicaid claims review and Florida Department of Health data files for FYs to The total number of special needs children served increased steadily during the four-year period from 45,553 beneficiaries in FY to 66,702 beneficiaries in FY , a 46 percent increase. The average cost per child also increased, rising about 10 percent per year, from $3,560 in FY to $5,454 in FY In FY , 8,424 medically complex children were served through Title XXI programs and 6,030 through other programs offered to the uninsured or underinsured through the CMS program. The four most costly Medicaid services provided to medically complex children in the state between FY and FY were the Developmental Services waiver services ($275,074,066), Private Duty Nursing ($334,999,974), Durable Medical Equipment ($112,842,411), and Speech Language Pathology ($59,486,228). Section III of the report discusses medically fragile children who received services in Prescribed Pediatric Extended Care (PPEC) facilities between FY and FY During these four fiscal years, Medicaid purchased PPEC services for a total of 1,493 children. Total costs for the PPEC program increased from $9.1 million in FY to $11.8 million in FY Although only one-third of the children received private duty nursing services while enrolled in the PPEC program in FY , the cost was $13.1 million. Cost per recipient for private duty nursing rose from $38,581 in FY to $54,809 in FY

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8 Section I Introduction Section 40 of House Bill 59-E requires the Agency for Health Care Administration to report on the status of Florida children with special needs who are medically complex and/or medically fragile. This report covers the period FY to FY and identifies: the ages of the children, the locations where the children are served, the types of services provided, the cost of services, and the funding source for services. In accordance with Rule 59G-1.010, F.A.C., a person who is medically complex and/or medically fragile meets the following criteria: Medically Complex An individual who has chronic debilitating diseases or conditions of one or more physiological or organ systems that generally make the person dependent upon 24-hour-per-day medical, nursing, or health supervision or intervention. Medically Fragile An individual who is medically complex and whose medical condition is of such a nature that he is technologically dependent, requiring medical apparatus or procedures to sustain life, e.g., requires total parenteral nutrition (TPN), is ventilator dependent, or is dependent on a heightened level of medical supervision to sustain life, and without such services is likely to expire without warning. The main distinction between children who are medically complex and children who are medically fragile is that those who are medically fragile need a higher level of service due to the need for life sustaining technologies or supervision. The report uses the term special needs when discussing both medically complex and medically fragile children together and uses medically complex or medically fragile when discussing each group separately. Section II of the report looks at special needs children statewide and encompasses all medically complex and fragile children identified through Florida Medicaid claims review and Florida Department of Health data files for FYs to Not all of the children reviewed meet the definition of medically fragile or complex, yet they may still have received the same services as this population. Services provided to special needs children in Medicaid were examined for a four-year period between FY and FY There are Medicaid programs that serve both medically complex and medically fragile children. The total number of special needs children served increased steadily during the four-year period from 45,553 beneficiaries in FY to 66,702 beneficiaries in FY , a 46 percent increase. The average cost per child also increased, rising about 10 percent per year, from $3,560 in FY to $5,454 in FY Costs to the state for non-medicaid eligible special needs children also increased during this time, from $952 in FY to $1,635 in FY , a 58 percent increase. 3

9 Section III of the report discusses medically fragile children who received services in Prescribed Pediatric Extended Care (PPEC) facilities between FY and FY The place of residency of the child while attending PPEC, the types of services received during the child s participation, and costs for the 11 geographic areas are discussed. Children in PPEC who transitioned into the Developmental Services (DS) waiver program also were tracked over these four years. The services that special needs children receive in Florida are as varied and complex as the children themselves. Little work has been done to study these children and their service patterns. This report represents the first step in assessing their service use. The results of this report will help identify potential areas of need, determine cost of services being provided, identify additional need for services, and provide insight into possible cost indications for the future. Information from this report was used to prepare a federal waiver to offer parents a subacute pediatric transitional care program for medically complex children hospitalized in Miami-Dade county. The new program is expected to save approximately $8 million per year at full implementation. The Agency received official approval for the program on December 30,

10 Section II Statewide Services Provided to Special Needs Children Introduction This section reviews the services provided to special needs children from FY to FY in Florida. It identifies special needs children by their age, the location where they received services, the types of services provided, the costs of the services received, and the funding sources paying for those services. Medically complex and medically fragile children, birth to age 21, receive a number of services through various state programs. 1 There are three major sources of funding for special needs children in Florida: Florida Medicaid housed at the Agency for Health Care Administration, the Department of Health s Children s Medical Services, and the Department of Financial Service s (formerly Department of Insurance) Birth Related Neurological Injury Compensation Association program. This section reports information on special needs children by those who receive services as medically complex individuals or as medically fragile individuals. Most of the Medicaid programs and services serve medically complex children; however, there are a few programs that meet the needs of medically fragile children. The non- Medicaid programs serve largely medically complex children. Medicaid Services Special needs children receive services through both Medicaid state plan and waiver programs (see Table 2.1) and through the Regional Perinatal Intensive Care Centers program (RPICC). Children served through waiver programs such as the Developmental Services waiver and the Model waiver are defined as medically complex. These children typically are not dependent on life sustaining technologies. However, some medically fragile children may receive some of the same services as those defined as medically complex. In 1974, Florida started the RPICC program for critically ill newborns (neonates). The RPICC program is a comprehensive statewide perinatal health care delivery system administered by Children's Medical Services located in the Florida Department of Health. It provides obstetrical services to women identified as having high-risk pregnancies and neonatal intensive care services to critically ill and low birth weight newborns. Children enrolled in RPICC are defined as medically fragile and typically depend on life sustaining technologies. The ultimate goal of RPICC is to improve the immediate and long-term outcome of pregnancy and of infants born at risk. Medicaid also serves medically fragile children in non-rpicc hospitals with neonatal intensive care units. Children s Medical Services Network Most special needs children are eligible for Medicaid. However, children are also served through other state programs administered by the Department of Health, Children s Medical Services (CMS). CMS was designed for children birth to age 21 who meet the criteria for children with special health care needs. Children receiving services through CMS are typically defined as medically complex. CMS is the state Title V Children with Special Health Care Needs (CSHCN) Program. The Department of Health operates the program, which is open to all children in Title XIX or Title XXI meeting medical eligibility criteria. Children in CMS have access to specialty providers, care coordination programs, early 1 See Appendix A for a description of the services provided through the state programs. 5

11 intervention services, and other programs that are essential for their health care. These children receive Medicaid state plan services, as well as other expanded services. Figure 2.1 depicts the eligibility criteria for Medicaid and Title XXI programs. Title XXI Florida KidCare is a health insurance program that provides coverage to children under the age of 19 who live in families earning no greater than 200 percent of the poverty level and who are not eligible for Medicaid. The CMS Network is one of the four components of Florida KidCare and serves children who not only meet the income guidelines, but are also clinically eligible for special health care services. Families enrolled in the CMS Network must pay a $15.00 monthly premium per household, but there are no co-payments. Services, except for emergencies, must be prior approved by the child s primary care physician and provided by CMS approved health care providers. Prior to KidCare, Medicaid covered infants age 0 to 1 at or below 185 percent of poverty, children ages 1 to 6 at or below 133 percent of poverty, children and adolescents ages 6 to 15 at or below 100 percent of poverty, and 15 to 19 year olds at 28 percent. Beginning in April 1998, Medicaid was expanded to include adolescents who are 15 to 19 years of age and who are at or up to 100 percent of poverty. On July 1, 2000, Medicaid was expanded a second time to provide coverage for infants age 0 to 1, in families with incomes at or below 200 percent of poverty. Except for Medicaid, Florida KidCare is not an entitlement program, which means that the state is not obligated to provide Title XXI benefits to all children who qualify and can establish a waiting list for the program. Participants contribute to the costs of their monthly premiums. The monthly family payment for Title XXI enrollees is $15.00 regardless of the number of children in the family. There is no monthly family payment for those in Medicaid. Children whose families submit a KidCare application are automatically screened for potential Medicaid eligibility. FFigure 2.1: 2.1: Florida Florida Eligibility Eligibility for State for Children s State Children s Services, FY Services, FY % 185 % 133 % MediKids Florida Healthy Kids Full Pay>200% Florida Healthy Kids 100 % Medica id Ages 0 to 1 Ages 1 through 4 Age 5 Ages 6 through 16 Ages CMS Network 6

12 Uninsured or underinsured children who meet the CMS Network medical eligibility screening criteria may receive services, subject to the availability of general revenue funds. The provision of these services is determined by the family's financial means and the availability of third party health insurance coverage. Neurological Injury Compensation Association Program A few children (87) are covered under the Birth Related Neurological Injury Compensation Association program (NICA), which is administered by the Department of Financial Services. NICA was established to provide compensation, irrespective of fault, for birth-related neurological injury claims. Children who are oxygen-deprived or have a mechanical injury during the course of labor or delivery, or require resuscitation in the immediate post delivery period are eligible for NICA if permanently and substantially mentally and physically impaired. This program is funded through fees paid by hospitals and physicians. Hospitals pay a fee for each delivery performed whereas physicians pay a yearly fee (see FS). Coverage is broader than Medicaid or CMS and provides services and equipment not otherwise covered through these programs. Medicaid Programs and Services for Special Needs Children A total of 66,702 Medicaid eligible children met the definition of medically complex or medically fragile in FY , excluding those that required any neonatal care. Total cost of serving these children was approximately $363.8 million in FY or $5,454 per person. Of this amount, 96 percent was for services or programs listed in Table 2.1. Many were enrolled in more than one program or received more than one of the listed services. 7

13 Table 2.1: Number of Medically Complex Children Receiving Selected Medicaid Services* Program Aged/Disabled Adult Waiver Developmental Services Waiver Model Waiver Program Project AIDS Care Waiver Service Durable Medical Equipment FY Children Served FY Children Served FY Children Served FY Children Served ,684 5,037 7,690 7, ,942 36,058 44,001 45,707 Medical Foster Care Nursing Homes Occupational Therapy 5,362 6,491 8,084 9,444 Private Duty Nursing 1,322 1,501 1,674 1,785 Personal Care Physical Therapy 5,308 6,220 7,360 8,401 Prescribed Pediatric Extended Care Respiratory Therapy Speech Language Pathology 8,630 10,590 12,660 14,207 * These are not unduplicated counts. Children may have received more than one service. Regional Perinatal Intensive Care Centers Program Medicaid funds most RPICC-based obstetrical and neonatal services. Since FY , Medicaid has utilized the Neonatal Care Group and Obstetrical Care Group methodology for reimbursement of RPICC neonatal and obstetrical professional providers serving Medicaid eligibles. Hospital reimbursement for Medicaid eligibles is based on a per diem methodology. The program bills Medicaid directly for those children who have been determined Medicaid eligible (1,646 or 58 percent of the 2,862 neonates served). Direct Medicaid payments for neonatal care were $12,193,238 in FY or $7,407 per neonate. In addition, the program receives disproportionate share Medicaid funds. RPICC disproportionate share funds were $6,885,472 in FY Disproportionate share dollars provide prenatal care as well as neonatal care. Twelve hospitals participated in the RPICC program as 11 designated centers. 2 2 Bayfront Medical Center and All Children s Hospital in Pinellas and Hillsborough Counties are designated as one center. 8

14 In FY , 9,467 neonates were served in RPICC neonatal intensive care units. This represented a 1.4 percent increase over FY Of these neonates, 1,968 or 20.7 percent were RPICC program participants including 18 children receiving extra corporeal membrane oxygenation treatment, which is an intensive care therapy that oxygenates the baby's blood outside the body and returns the blood to the circulatory system until the heart and lungs recover. Most of the children served in the RPICC program (96 percent) survived. The average length of stay in FY was 37.9 days, which is a 3.8 percent decrease in the average length of stay over the prior year. Medicaid Neonatal Intensive Care Another 3,327 neonates were served in neonatal intensive care units (NICU) in non-rpicc hospitals. The total Medicaid cost of serving these neonates while they were hospitalized was approximately $1,600 per neonate in FY Enrollment for neonates covered by state programs is summarized in Table 2.2. Neonates served in these programs have a higher than normal probability of permanent disability, but many no longer need special services when discharged. For example, children served by Medicaid in this program were tracked to see how they fared a year later. Thirty percent of Medicaid neonates served in RPICC in FY were medically complex in FY Of those children served in NICUs in FY , 26 percent were medically complex in the following year. Traumatic Brain Injury and Spinal Cord Injury (TBI/SCI) Waiver The TBI/SCI 1915c Medicaid waiver provides supports and services through home and community-based services to eligible persons aged 18 or older who have suffered a traumatic brain injury and/or traumatic spinal cord injury and live at home or in a home-like setting. TBI/SCI waiver recipients must demonstrate health conditions and/or limitations in functioning that would result in placement in a skilled nursing facility were it not for the provision of TBI/SCI waiver services. This program typically serves adults who have had a catastrophic accident, rather than children. Table 2.2 shows the number of medically fragile children served by Medicaid programs between FY and FY Table 2.2: Medically Fragile Children Served by Medicaid Programs, FY to FY Program FY FY FY FY RPICC Program 1,562 1,845 1,828 1,968 Medicaid Neonatal Intensive Care Traumatic Brain Injury/Spinal Cord Injury Waiver 3,573 3,245 3,494 3,

15 Services Offered Through the CMS Network In FY , 8,424 medically complex children were served through Title XXI programs and 6,032 through other programs offered to the uninsured or underinsured through the CMS program. Table 2.3 shows the number of children enrolled in Title XXI and the state-funded uninsured/underinsured program. Table 2.3: Medically Complex Children Served by CMS Programs, FY to FY Program FY FY FY FY Title XXI Uninsured/Underinsured Characteristics of Special Needs Beneficiaries Age Special needs children are served through their 20th year; however, most receive services when they are younger. As Table 2.4 shows, most children receiving services are 11 years of age or younger. In FY , the largest number of beneficiaries who received services were three years of age or younger. Table 2.4: Special Needs Children Receiving Medicaid Services by Age FY * Age Category Number of Beneficiaries Percent of Beneficiaries Under 1 18, % , % 4-5 7, % , % , % , % , % Total 66, % * This number does not include children in Title XXI or the underinsured/uninsured programs. 10

16 Age Distribution of Children by Program and Service Cost The age patterns of medically complex children were examined by looking at the most costly Medicaid program; the Developmental Services (DS) waiver, and the three most costly services including: Private Duty Nursing (PDN) Speech Language Pathology (SLP) Durable Medical Equipment (DME) Data on enrollment in the waiver and the number of beneficiaries receiving these services are listed in Table 2.5. As this table indicates, the number of children receiving PDN, SLP, and DME services decreased as age increased. In the DS waiver, the number of beneficiaries increased steadily with age after the age of two (those under two years of age showed zero percent). Table 2.5: Age of Beneficiaries for the Four Most Expensive Medicaid Services or Programs, Totaled for FY through FY * Age Total Number of Children PDN SLP DME DS Waiver Average Percent of Total Number Total Number of Children Average Percent of Total Number Total Number of Children Average Percent of Total Number Total Number of Children Average Percent of Total Number <1 1, % 2, % 51, % 0 0.0% % 6, % 18, % 0 0.0% % 10, % 12, % 7 0.0% % 6, % 9, % % % 5, % 8, % % % 3, % 7, % % % 2, % 5, % 1, % % 1, % 5, % 1, % % 1, % 4, % 1, % % 1, % 4, % 1, % % % 4, % 1, % % % 3, % 1, % % % 3, % 1, % % % 3, % 1, % % % 2, % 1, % % % 2, % 1, % % % 2, % 1, % % % 2, % 1, % % % 1, % 1, % % % 1, % 1, % % % 1, % 1, % Total 6, % 45, % 157, % 21, % *Totals are 4-year cumulative by service for FY through FY

17 Table 2.5 also shows that the highest percentage of children receiving PDN and DME services were found in two age groups, the under one and age one groups, representing 31 percent of the total number of children receiving PDN services and 44 percent of the total number of children receiving DME services. Sixty-four percent of the children who received SLP services were concentrated in the age groups between ages one and four. A limited number of beneficiaries used the TBI/SCI waiver, Aged/Disabled Adult waiver, and the Model waiver Program. The TBI/SCI waiver and Aged/Disabled Adult waiver provided services to beneficiaries 18 to 20 years of age only. There were no children using the TBI/SCI waiver in FY A total of seven children received TBI/SCI services in the next three fiscal years. The Aged/Disabled Adult waiver provided services to a total of 26 beneficiaries during the four years reviewed. Only 11 beneficiaries received services from the Model waiver during this time. The RPICC program and NICU program provided services to children less than 12 months of age only. In FY , RPICC provided services to 1,562 beneficiaries. The total number of RPICC beneficiaries increased steadily by 1.6 percent each year to reach 1,968 by the fourth year. In FY , NICU provided services to 3,573 children, representing 3.7 percent of the total number served in all programs serving special needs children that year. By the fourth year, 3,958 children were served in a NICU, which was 4.1 percent of the total number served. As RPICC caseloads steadily increased each year, NICU was more sporadic with increases and decreases in the number of children served. Age Distribution for Non-Medicaid State Programs Fewer children are served in the non-medicaid state programs, and most tend to be between six and 14 years of age. Table 2.6 shows the number of children receiving Title XXI services by age group for FY Although all of the children are special needs children, not all are considered medically complex. Table 2.6: Medically Complex Children Receiving Title XXI Services by Age, FY * Age Category Number of Beneficiaries Percent of Beneficiaries Under % % % , % , % % % Total 5, % * Approximately one-third of Title XXI children had no age listed. 12

18 Race/Ethnicity Table 2.7 shows the number of children in each program by race/ethnicity. Whites and African- Americans represent the majority of children receiving Medicaid services. A large number of children fall into the Other category. Caution is required in interpreting the race/ethnicity data. Many individuals do not fill out the race category on the eligibility form, and some choose not to fill out the information if they self-identify in a different category. Table 2.7: Racial/Ethnic Composition by Program, FY Percent Race/Ethnic Medically Percent Percent in Medically NICU RPICC Category Complex in NICU RPICC Complex White % % % African- American % % % Indian 22 <1% 5 0.1% 1 <1% Oriental 198 <1% % 7 <1% Hispanic % % % Other % % % County Comparisons of Service Utilization Differences exist across counties in the types of Medicaid programs and services used by medically complex children. 3 The programs and services listed below were the most costly to Medicaid. They have been divided into two groups, therapy and intensive care, for discussion purposes. The services contained in each group are: Group 1 - Therapy: Occupational Therapy (OT) Physical Therapy (PT) Speech Language Pathology (SLP) Durable Medical Equipment (DME) Group 2 - Intensive Care: Developmental Services Waiver (DS Waiver) Regional Perinatal Intensive Care Center (RPICC) Private Duty Nursing (PDN) The services provided in Group 1 (OT, PT, SLP, and DME) are for children with therapeutic needs. Group 2 programs and services (DS waiver, PDN, and RPICC) provided care to children requiring 3 See Appendix C for maps of county differences. 13

19 intensive care. In general, the concentration of children that received services tended to be in urban counties, especially in those counties where there are hospitals with neonatal units. For example, children in Miami-Dade county had the highest utilization of RPICC and DME services, representing a higher percentage of the total number of children (more than 20 percent) than any other program or services during the four years reviewed. Among the services in Group 1, DME showed the greatest concentration of children served (more than 6 percent of DME users) were mostly in the southern counties with large populations. Greater than 20 percent of children receiving DME services during this time were in Miami-Dade county. OT and SLP therapies were concentrated heavily in Broward, Orange, and Miami-Dade counties with 10 to 19 percent of this population receiving these two therapies. In Leon county, three to five percent of medically complex children received SLP services, but not OT or PT. All of the services in Group 1, PT, OT, SLP, and DME, provided services to three percent or more medically complex children in the following counties: Brevard, Broward, Duval, Hillsborough, Miami-Dade, Orange, Palm Beach, Pinellas, Polk, and Volusia. Three to five percent of children received OT, PT, and SLP services during this period in Bay county. The three programs in the Intensive Care Group, RPICC, DS waiver, and PDN, showed heavy concentration of service provided to medically complex children (greater than six percent) in Broward and Miami-Dade counties. Escambia and Duval showed a notable concentration of services provided to this population (greater than three percent) for all three intensive care programs. PDN and RPICC services were provided to more than six percent of the total number of children in four counties: Broward, Miami-Dade, Palm Beach, and Orange. The highest percentage of children who received PDN and DS waiver services (greater than six percent) received those services in Broward, Miami-Dade, Pinellas, and Hillsborough counties. Miami-Dade county provided more than 20 percent of RPICC services to medically complex children in the state. Both the therapy and the intensive care groups used PDN. All of the services discussed had greater than six percent utilization in Broward and Miami-Dade counties for medically complex children. Six percent of the medically complex population in Hillsborough county used all of the services discussed except RPICC. There was also a greater than six percent utilization of all services in Orange county, except for the DS waiver. Costs of Services for Medically Complex Children Program and Service Funding Of the 19 programs and services provided to medically complex children during the four fiscal years covered in this report, 16 were funded through Medicaid, two were funded by the Department of Health, Children s Medical Services Network and one through the Department of Financial Service s NICA program. Beneficiaries who were eligible for Medicaid comprised percent of the total number of the medically complex children per year, and those not eligible for Medicaid comprised percent per year. Program and Service Costs Table 2.8 below provides information by cost for all of the Medicaid programs and services used by medically complex children, except the RPICC and NICU programs. 14

20 Table 2.8: Costs of Medicaid Programs and Services for Medically Complex Children Program FY FY FY FY Aged/Disabled Adult Waiver $19,754 $32,350 $52,497 $ 245,627 Developmental Services Waiver $25,770,958 $45,946,588 $94,153,272 $109,203,248 Model Waiver Program $0 $5,394 $27,081 $105,429 Project AIDS Care Waiver $1,217,246 $1,129,746 $1,248,619 $1,089,983 Traumatic Brain Injury/ Spinal Cord Injury Waiver Service $0 $3,106 $10,472 $67,434 $48,856,374 $57,265,014 $108,279,875 $120,598,7112 Personal Care $2,322,215 $2,207,913 $3,274,934 $3,413,898 Physical Therapy $5,423,626 $6,791,572 $9,723,756 $12,494,931 Occupational Therapy $5,786,242 $7,582,321 $11,289,590 $14,521,957 Speech Language Pathology $9,855,105 $12,787,958 $16,542,316 $20,300,849 Respiratory Therapy $795,533 $2,042,281 $2,840,424 $ 3,383,426 Prescribed Pediatric Extended Care $9,120,010 $10,166,502 $11,399,199 $11,761,227 Medical Foster Care $4,582,003 $5,076,612 $5,835,644 $6,398,426 Durable Medical Equipment $23,499,158 $25,951,755 $30,188,122 $33,203,376 Nursing Homes $9,005,975 $9,963,332 $11,085,515 $12,669,292 When the costs are compared with the number served in Table 2.1, it becomes apparent that PDN, DS waiver, DME, and SLP rank the highest in both costs and use. PDN and DS waiver services incurred the highest costs, whereas the largest number of children received DME services. Table 2.8 represents an itemized list of costs by individual services. As the table indicates, the four most costly Medicaid services to medically complex children in the state between FY and FY were DS, PDN, DME, and SLP. Table 2.9 shows the four year cost totals for these services. Table 2.9: Four Most Costly Medicaid Services to Medically Complex Children, FY to FY Service Total 4 Cost Developmental Services (DS) Waiver $275,074,066 Private Duty Nursing (PDN) $334,999,974 Durable Medical Equipment (DME) $112,842,411 Speech Language Pathology (SLP) $59,486,228 15

21 Figure 2.6 below presents a comparison of the four services that ranked highest in cost over the four years. PDN costs the most with an average of 34 percent of the total cost per year. The DS waiver came second with an average of 28 percent per year, and DME third with an average cost of 11 percent per year. SLP ranked fourth in average cost per year, making up six percent of costs. Figure 2.6: Figure Cost 2.6: Cost Comparison of of the the Four Most Costly M Medicaid Services Services 35.0% 30.0% 25.0% 20.0% 15.0% FY FY FY FY % 5.0% 0.0% PDN SLP DME DS Waiver Costs for RPICC and other neonatal intensive care units (NICU) are shown in Table Service costs remained relatively constant for both programs between FY and FY Table 2.10: Costs of Medicaid Services for Medically Fragile Children, FY to FY * Program FY FY FY FY Total 4 Costs RPICC $10,651,288 $11,812,586 $11,259,392 $9,034,351 $42,757,617 NICU $5,268,832 $4,770,379 $5,253,315 $5,333,673 $15,292,526 * Excluding Medicaid disproportionate share hospital funds. 16

22 As mentioned earlier, all of the programs, except Title XXI and the uninsured/underinsured program, received funding from Medicaid. These programs receive funding from the Department of Health, CMS Network funds. Table 2.11 shows costs for these two services over the four years discussed. Table 2.11: Costs of CMS Network Services, FY to FY Program FY FY FY FY Total 4 Costs Title XXI $1,729,983 $10,611,985 $18,220,524 $20,576,152 $51,138,645 Uninsured/ Underinsured $4,524,234 $4,442,440 $3,818,607 $3,056,602 $15,841,882 Medicaid Services vs. Non-Medicaid Services A comparison of the costs between Medicaid services and non-medicaid services is presented in Table The two non-medicaid eligible programs were Title XXI and the uninsured/underinsured program. Funds for these programs were acquired through general revenue funds in the Department of Health and services were provided according to the availability of those limited funds. The average cost per person during this time increased steadily for both Medicaid-eligible and noneligible medically complex children. Medicaid-eligible children had a cost per person that ranged from $2,637 in FY to $3,702 in FY The average cost per person for those not eligible for Medicaid ranged from $952 in FY to $1,635 in FY In general, the average cost per person for non-eligible services was less than half those of Medicaid-eligible services. Table 2.12: Comparisons of Children Enrolled in Medicaid and Non-Medicaid Programs, FY to FY State Fiscal Medicaid Eligibles Non-Medicaid Program Eligibles Number of Children Per Percent of Total Number* Cost Per Percent of Total Cost Average Cost Per Person Per Number of Children Per Percent of Total Number Cost Per Percent of Total Cost Average Cost Per Person Per , % $162,174, % $3,560 6, % $6,254, % $ , % $203,535, % $3,825 14, % $15,054, % $1, , % $322,464, % $4,987 15, % $22,039, % $1, , % $345,531, % $5,180 14, % $23,632, % $1,635 *Totals figured from Table 2.12, which reports total Medicaid eligible and non-eligible numbers. 17

23 Table 2.13 reports total costs for Medicaid eligibles and non-eligibles. The total number of medically complex (both Medicaid and non-medicaid) beneficiaries served increased steadily during the four years, from 68,075 beneficiaries in FY to 107,803 beneficiaries in FY In FY , the percent of total cost for Medicaid eligibles was 96.3 percent and for Medicaid non-eligibles was 3.7 percent. The percent of total cost per Medicaid-eligible child for FY to FY remained relatively stable, ranging from 93.1 to 96.3 percent of the total population; and for the non- Medicaid eligible children, the percent of total cost ranged from 3.7 to 6.9 percent. Table 2.13: Total Costs for Children Enrolled in Medicaid and Non-Medicaid Programs Medicaid Eligibles and Non-Eligibles State Fiscal Total Number of Children Total Cost ,075 $168,428, ,207 $218,589, ,240 $344,503, ,803 $369,164,333 18

24 Section III The Prescribed Pediatric Extended Care Program Introduction This section presents data gathered on children enrolled in the Florida Prescribed Pediatric Extended Care (PPEC) program including the demographic characteristics (age, race, location, and residence) of enrollees; the types of other services they receive; and the method of paying for those services. The PPEC program includes an array of services focused on meeting the medical, developmental, physical, nutritional, and social needs of these children. PPEC provides a less restrictive alternative to institutionalization and reduces the isolation that a homebound, medically fragile child may experience. Medicaid reimbursement for PPEC services includes nursing and personal care services that are ordered by the physician. PPEC programs that provide other Medicaid services, such as therapies and durable medical equipment, must be enrolled as Medicaid providers of those services. Medicaid reimburses for PPEC services for Medicaid-eligible recipients under the age of 21 who are medically fragile or need acute medical care. The services must be prescribed by the attending physician, be recommended by the Children s Multidisciplinary Assessment Team, and must be authorized by an area Medicaid office service authorization nurse. There are 21 licensed PPECs in the state that provide care during the day to medically fragile children. The program allows participants to interact with other children in a safe and medically appropriate manner and enhances their quality of life. The current per diem for the service is $ Children must be medically fragile to participate; however, fewer than five children were ventilator dependent as of January 6, This is largely due to the difficulty in transporting ventilator-dependent children. This section covers Medicaid-eligible children served during the period of July 1, 1998, through June 30, During these four fiscal years, Medicaid purchased PPEC services for a total of 1,493 children. As Table 3.1 shows, overall Medicaid caseloads for PPEC services increased 27 percent between FY and FY Children receiving PPEC services may be enrolled in Medicaid for less than a year. For example, five children in FY were enrolled in Title XXI for at least part of the year. Title XXI costs for PPEC services were $41,607 in that year. In other years, Title XXI expenditures were less than $10,000. Some children may be served by PPEC who are not Medicaid eligible. Their care would be funded through general revenue and covered by the Florida Department of Health, Children s Medical Services through either the Title XXI program or other state programs. Total expenditures in FY for PPEC services to such children were relatively low at $37,583 and may reflect services provided prior to Medicaid eligibility being obtained. Thus, the remainder of this section is based on Medicaid eligibility and claims data. Table 3.1: Annual Medicaid Caseload for Children Receiving PPEC Services FY FY FY FY Total Annual Caseload Percent Change * 13.6% 9.5% 1.8%, *Previous year s data not available. 19

25 Characteristics of PPEC Beneficiaries Age The majority of Medicaid-eligible children served by PPEC are under age three. Table 3.2 provides age characteristics by fiscal year for children receiving PPEC services. Between FY and FY , those children receiving PPEC services grew continually younger. Children under twelve months of age were the largest group to receive PPEC services among all age groups, representing an average of 31 percent of the total number of PPEC beneficiaries served each year. Children one year of age, followed by those two years of age, were the second and third largest groups to receive PPEC services, with an average of 19 percent and 13 percent respectively of the total number of PPEC beneficiaries each year. Only 36 percent of children enrolled in PPEC were between ages 3 and 16, and by age 17, a limited number of children received PPEC services. Table 3.2: Number of PPEC Beneficiaries by Age Age of Child FY FY FY FY <

26 Length of Participation in the PPEC Program As the ages of PPEC enrollees suggest, Medicaid-eligible children usually do not remain in the PPEC program for long periods of time. Table 3.3 represents the tracking, by Medicaid numbers, of the three groups of children who entered PPEC in FY , FY , and FY The table shows that the enrollment of children in PPEC decreased at a rate of 38 percent. For instance, in FY , a total of 568 children were enrolled in PPEC. Of this group, the number of children who remained in PPEC decreased to 341 in FY , representing a decrease of 39.9 percent from the previous year. After four years, only 24 percent of those children enrolled in FY were still enrolled. Those still enrolled were more expensive on average to Medicaid during their first year of enrollment than those who disenrolled from PPEC. In FY , those children still in PPEC after four years cost Medicaid $96,700 each. This compares to an average cost of $60,200 overall for children in PPEC in FY Table 3.3: Percentage Change in the Number of Children in PPEC from FY to FY FY FY FY FY Number of Children in PPEC Percentage Change 100% -40% -38.7% -35% Number of Children in PPEC Percentage Change 100% -38.3% -43.5% Number of Children in PPEC Percentage Change 100% -38.3% Where did the children go after they left the PPEC program? Table 3.4 provides data on the number of children who died, the number who entered the DS waiver, and those who continued to be Medicaid eligible after leaving PPEC. Relatively few, less than 10 percent, of these extremely complex children died over the four-year period covered. More children (137 or 24 percent) entered the DS waiver program under Medicaid. The number entering the DS waiver continued to increase each year. Almost 76 percent of the PPEC disenrollees from the initial group in PPEC in FY were still in Medicaid three years later in FY Those who disenrolled were less costly on average than those who did not. In FY , 227 children left the PPEC program. Of these, 26 (11.5 percent) died, and 185 (81.5 percent) remained in Medicaid. Of these 185 children, 39 entered the DS waiver. Medicaid costs for serving the 227 children remained high at $38,853 per child per year for a total cost of $7,187,760. However, this was much lower than the total Medicaid costs of serving those children still in PPEC, which was $83,815 per child per year. By the third year, 167 of the 227 children were in Medicaid at a cost of over $40,000 per year with a total Medicaid claims amount of $6,720,293. By the fourth year, 163 of the 227 children had a cost per year of $36,791 with a total Medicaid claims amount of $5,996,

27 Fourteen percent of the children who left PPEC between FY and FY cannot be accounted for. These children may have had PPEC services prescribed following an acute episode of illness, meaning the PPEC service was prescribed for a limited number of days. Another explanation is that some may have been ineligible for Medicaid but were served through Title XXI or regular Title V services. Still others may have been privately insured. Table 3.4: Tracking the Children Enrolled in PPEC in FY State Fiscal Beginning Number of Children in PPEC Number of Children Who Discontinued PPEC Number of Children Who Died Number of Children in PPEC Entering the DS Waiver Number of Children on Medicaid but not PPEC N/A N/A 13 N/A Racial/Ethnic Composition The racial/ethnic background of Medicaid eligible PPEC beneficiaries was unknown for over half (60 percent) of the participants in FY Table 3.5 shows the distribution of children enrolled in PPEC by race/ethnicity. For those for which data were available, the majority (52 percent) were African- American, 39 percent were white, and eight percent were Hispanic. Three children were identified as Asian and are included in the Other category. Table 3.5: Race/Ethnicity of PPEC Beneficiaries, FY Race/Ethnicity PPEC Beneficiaries Percent White % African-American % Hispanic 24 3% Other % 22

28 Figure 3.1 illustrates the racial composition of children enrolled in PPEC in Florida s 11 service areas. Areas 11, 6, and 4, respectively, had the highest number of African-American beneficiaries. Areas 6, 8, and 7, respectively, had the most white children in PPEC, while most of the Hispanic PPEC participants were from Areas 8, 6, 11, and 7, respectively. Figure 3.1 Racial Composition of PPEC Beneficiaries, FY Figure 3.1: Racial Composition of PPEC Beneficiaries, FY % 25.0% Percent of Total 20.0% 15.0% 10.0% White African-American Hispanic Other 5.0% 0.0% Area 1 Area 2 Area 3 Area 4 Area 5 Area 6 Area 7 Area 8 Area 9 Area 10 Area 11 23

29 Sumter Where are PPEC Beneficiaries Located? Children enrolled in PPEC are increasingly served across more counties. Figure 3.2 below shows the number of Medicaid-eligible PPEC beneficiaries by county for FY Miami-Dade and Hillsborough counties consistently showed the highest numbers enrolled with more than 61 PPEC enrollees for each of the four years. Lee, Orange, and Duval counties ranked second with enrollments between 41 and 60 children. Lee and Orange counties each enrolled more than 60 children in one year during the four-year period. Figure 3.2: PPEC Enrollments by Florida County, FY Escambia Santa Rosa Okaloosa Walton Holmes Washington Bay Jackson Calhoun Gulf Liberty Gadsden Franklin Leon Wakulla Jefferson Madison Taylor Dixie Suwannee Lafayette Prescribed Pediatric Extended Care Services Fiscal Hamilton Gilchrist Levy Pinellas Columbia Alachua Citrus Pasco Baker Union Hernando Bradford Hillsborough Manatee Sarasota Marion Nassau Clay Lake Duval Putnam Charlotte Polk Hardee DeSoto St Johns Flagler Volusia Seminole Orange Osceola Highlands Glades Brevard Okeechobee Indian River St Lucie Martin Lee Hendry Palm Beach Number of PPEC Beneficiaries and Over Collier Monroe Broward Miami-Dade There is limited PPEC enrollment in the northern part of the state. This has remained relatively constant over the period reviewed in this report. 4 See Appendix D for PPEC enrollments by county for FY to FY

30 Residence of Medicaid Eligible Children Receiving PPEC Services During their enrollment in the PPEC program, Medicaid eligible children had four types of residences. The children lived either with a parent, a relative, a guardian, or in foster care. Occasionally, a child would change residence in the course of the year or rotate between two residences. Figure 3.3 below shows that 93.7 percent of the PPEC beneficiaries in Florida lived with a parent, 4.1 percent lived with a relative, 1.8 percent lived in foster care, and 0.4 percent resided with a guardian. Figure 3.3: Figure Residence 3.3: Residence of Children of Children While while Enrolled Enrolled in in PPEC PPEC 4.1% 0.4% 1.8% Parent Relative Foster Care Guardian 93.7% Program Costs and Services Provided Under PPEC PPEC services to Medicaid beneficiaries cost an average of $16,000 per child per year as can be seen in Table 3.6. Due to an increase in PPEC enrollment, the per person costs for the program declined as the total costs grew. Total costs increased from $9.1 million in FY to $11.8 million in FY

31 Table 3.6: Average Cost Per Person Per for PPEC Services FY FY FY FY Total Costs of PPEC Services $ 9,120,010 $10,166,502 $11,399,199 $11,767,561 Number of PPEC Beneficiaries Average Annual Cost Per Beneficiary $16,056 $15,762 $16,146 $16,367 The growth in expenditures is presented in Figure 3.4 below. Once data from FY become available it will be clearer as to whether there has been a leveling off of costs for PPEC services. Figure Figure 3.4: Change 3.4: Change in Total in Total Costs Costs of PPEC of PPEC Services, Services, FY FY through Through FY FY ,000, ,000, ,000, ,000, ,000, ,000, ,000, FY FY FY FY In addition to services provided under PPEC, children receive other Medicaid services. The per person costs of the other services was $60,191 in FY , which brought the total costs of serving these children to about $76,000 per child in the program. Per-child Medicaid expenditures, excluding PPEC, rose to $64,776 in FY Thus, while the per-person costs for a child in PPEC dropped slightly, the total per-person program costs increased to $80,382 per child. Table 3.7 presents the total costs of these other Medicaid services. 26

32 Table 3.7: Other Medicaid Expenditures for PPEC Beneficiaries FY FY FY FY Hospital Inpatient $11,269,397 $12,043,391 $12,311,515 $15,081,619 Prescribed Drugs $3,054,107 $3,572,724 $5,831,235 $7,015,676 Medical (Other than PPEC) $19,865,197 $22,065,883 $23,760,023 $26,743,685 Totals (Other Expenses) $34,188,700 $37,681,998 $41,902,772 $48,840,980 As Table 3.8 indicates, about 31 percent of costs were for hospital inpatient care, 14 percent were for prescription drugs, and over half were for other medical services including physician services in FY As with Medicaid, prescribed drugs generally grew substantially as a percentage of expenditures increasing from 8.6 percent in FY to 14 percent in FY In contrast, hospital costs declined from 33 percent to 31 percent in the same time period. A closer examination of services gives a better understanding of costs. Table 3.8 shows the number of children receiving various Medicaid services. Table 3.8: Number of Other Types of Medicaid Services Received by Children Enrolled in PPEC FY Number Served Percent of Total FY Number Served Percent of Total FY Number Served Percent of Total FY Number Served Percent of Total Durable Medical Equipment % % % % Physical Therapy % % % % Occupational Therapy % % % % Speech Language Pathology % % % % Private Duty Nursing % % % % Respiratory Therapy % % % % Developmental Services Waiver % % % % Neonatal Intensive Care Unit % % % % Medical Foster Care % % % % Personal Care % % 9 0.4% % Project AIDS Care 6 0.3% 5 0.2% 6 0.2% 3 0.1% Nursing Home Care 4 0.2% 3 0.1% 4 0.2% 6 0.2% Model Waiver Program 0 0.0% 0 0.0% 2 0.1% 2 0.1% 27

33 As can be seen in Table 3.8 below, 96 percent of the Medicaid children received other services from the top seven programs: DME, PT, OT, SLP, PDN, RT, and the DS waiver, ranked in that order. The remaining six services represent only 4.0 percent of services provided to the total number of PPEC beneficiaries. Table 3.9 provides the costs of these Medicaid services for PPEC beneficiaries. Costs went from $13 million in FY to $21 million in FY Most of the increase was for PDN. As Table 3.9 indicates, although only 35 percent of PPEC children received PDN services, provision of such services was the most expensive, costing almost $8 million in FY Although only one-third of the children received PDN services in FY , the cost was 67 percent higher or $13.1 million. Cost per recipient for PDN rose from $38,581 in FY to $54,809 in FY Table 3.9: Medicaid Expenditures for Selected Services to Children Enrolled in PPEC*, FY to FY Program FY Costs FY Recipient Count FY Costs FY Recipient Count FY Costs FY Recipient Count FY Costs FY Recipient Count PDN $7,870, $8,316, $11,471, $13,154, PC $81, $86, $ 96,816 9 $172, NICU $57, $54, $104, $124, MDL $0 0 $0 0 $5,728 2 $24,560 2 PT $813, $837, $1,023, $1,051, OT $782, $819, $ 904, $ 976, SLP $795, $780, $896, $926, RT $234, $471, $495, $544, MFC $139, $142, $181, $212, DME $1,976, $2,141, $2,190, $2,450, AIDS $79,960 6 $70,284 5 $86,165 6 $ 32,918 3 DSW $67, $326, $674, $730, NH $52,850 4 $124,665 3 $101,235 4 $265,011 6 * Services may have been provided prior to or after receipt of PPEC services. The second most expensive service was for DME. Approximately 82 percent of the beneficiaries needed some equipment. Although expenditures rose, the increase was primarily the result of an increased caseload as the cost per person dropped slightly from $4,279 in FY to $4,153 in FY A few children required nursing home services during the year or received other waiver services. If beneficiaries were eligible for RPICC services under Medicaid before entering the PPEC program their costs are included in the annual costs. 28

34 Program Comparisons Comparison of the PPEC Program and Developmental Services Waiver Program During the four fiscal years studied, the state experienced an overall increase in both the total number of beneficiaries and the total annual costs for PPEC and the Developmental Services (DS) waiver. As Table 3.10 shows, both PPEC costs and caseloads increased steadily by a small percentage. However, the average cost per person per year dropped steadily for the PPEC program, while costs and caseloads for the DS waiver increased significantly during this same time period. Per person expenditures for PPEC are higher than for the DS waiver. A few beneficiaries were in both programs during a one-year period. For example, in FY , 13 of the 568 children served by PPEC were in the DS waiver. Differences in costs are to be expected. In general, younger children have higher medical costs than older children. The PPEC program serves a younger age group then does the DS waiver. Therefore, PPEC expenditures per person are expected to be higher then the DS waiver cost per person. Table 3.10: Comparison of the PPEC Program and Developmental Services Waiver Fiscal Total Number of Beneficiaries Total Number of People Each Total Annual Costs Percentage Change in the Average Cost per Person per PPEC DSW PPEC DSW PPEC DSW Percent Change from Previous Total Number of People Each Percent Change Total Cost Each from Previous Percent Change from Previous Total Cost Each Percent Change from Previous Average Cost per Person per Percent Change from Previous Average Cost per Person per Percent Change from Previous FY FY FY ,684 $9,120,010 $25,770,958 $16,056 $15, % 5, % $10,166, % $45,946, % $15, % $9, % % 7, % $11,399, % $94,153, % $16, % $12, % FY 01-02* % 7, % $11,767, % $103,383, % $16, % $14, % Comparison of Private Duty Nursing Services and PPEC Services From 1998 to 2002, the total number of children increased for both PPEC and PDN. PDN had a slightly higher caseload increase on average than PPEC, but PDN cost was significantly higher than PPEC cost as shown in Table In FY , the total annual PPEC cost increased 11.5 percent from the FY total annual cost, but PDN total annual cost increased by 17.2 percent over this same time period. The average cost per person per year for PPEC in FY decreased by 1.8 percent from the previous year, but PDN had an increase of 3.2 percent in the average cost per person per year during this same time period. The gap widened in FY when PPEC experienced a 12.1 percent increase in total annual cost, whereas PDN experienced a substantial increase of 89.1 percent in total annual cost during this same time. The change in the average cost per person for PPEC in FY increased from the previous year by 2.4 percent, while that of PDN had a significant increase in the average cost per person of 69.5 percent during this time. 29

35 The total number of PPEC beneficiaries during this time ranged from 568 children in FY to 719 children in FY The total number of PDN beneficiaries showed a similar trend, with a range from 1,322 children in FY to 1,736 children in FY It is interesting to note that the percent of change from FY to FY for both PPEC (13.6 percent) and PDN (13.5 percent) was relatively the same with regard to the total number of beneficiaries. However, the percent of change in beneficiaries, FY to FY , for PPEC (9.5 percent) and PDN (11.5 percent) decreased, whereas the cost increased for PPEC (12.1 percent) and substantially increased for PDN (89.1 percent) during this time. A possible explanation for the PPEC increase in the average cost per person for this time period is greater utilization of full-day care versus half-day care. Some of the PDN cost may be attributed to greater utilization of 24-hour nursing and nursing that spanned more days. Table 3.11: Comparison of Costs: PPEC and Private Duty Nursing Services State Fiscal Total Number of Beneficiaries Total Number of Children Total Annual Costs Percentage Change in the Average Cost per Person per PPEC PDN PPEC PDN PPEC PDN Percent Change from Previous Total Number of Children Percent Change from Previous Total Cost Percent Change from Previous Total Cost Percent Change from Previous Average Cost per Person per Percent Change from Previous Average Cost per Person per Percent Change from Previous ,322 $9,120,010 $ 48,856,374 $16,056 $36, % 1, % $10,166, % $ 57,265, % $15, % $38, % % 1, % $11,399, % $ 108,279, % $16, % $64, % % 1, % $11,767, % $ 120,764, % $16, % $67, % 30

36 Appendix A Description of Programs that Serve Medically Complex Children Aged/Disabled Adult Waiver The Aged/Disabled Adult Waiver is a home and community-based services program. It includes the following services: adult companion, adult day health care, attendant care, case aide, case management, chore services, consumable medical supplies, counseling, environmental accessibility adaptation, escort, family training, financial risk reduction, health support, home-delivered meals, homemaker and personal care services, nutrition, personal emergency response systems, pest control, physical risk reduction, physical therapy, respite care, skilled nursing, specialized medical equipment and supplies, and speech language pathology. To be eligible, an individual must be 65 years or older or be ages 18 to 64 and determined disabled according to Social Security standards, meet Supplemental Security Income, MEDS- AD, or Medicaid Waiver Assistance income and asset requirements, meet nursing facility level-of-care criteria as determined by Comprehensive Assessment and Review for Long Term Care Services (CARES), receive care management and at least one other waiver service, and be enrolled in the waiver. Developmental Services Waiver The Developmental Services (DS) Waiver provides services for adult day training, adult dental, behavioral services, chore services, companion services, dietitian, environmental modification, homemaker, in-home supports, non-residential support services, occupational therapy, personal care assistance, personal emergency response systems, physical therapy, private duty nursing, psychological services, RT, residential habilitation, residential nursing, respite, skilled nursing services, special medical equipment and supplies, special medical home care, speech language pathology, specialized mental health services, support coordination, supported employment, supported living coaching, therapeutic massage, and transportation. To be eligible, a recipient must be a Developmental Disabilities Program client, meet the level-of-care criteria for intermediate care facilities for the developmentally disabled, meet Supplemental Security Income related to Medicaid or Institutional Care Program income and asset requirements, and be enrolled in the Developmental Services Waiver. Model Waiver The Model Waiver provides case management and respite care services. Case management is provided by the Department of Health, Children s Medical Services. Individuals make an informed choice between hospital, and home and community-based services. The waiver has six criteria for participation. If all these criteria are met, the individual may elect to participate in the Model Waiver if space is available. Florida serves only five people at any one time in the waiver statewide. The recipient must meet these six basic criteria: diagnosed as having a degenerative spinocerebellar disease, commonly classified in the range of ICD-9-CM diagnosis classifications; under 21 years of age; determined disabled using criteria established by the Social Security Administration; require a level-of-care recommended by a Children s Multidisciplinary Assessment Team staffing that would normally be provided in an inpatient hospital setting; able to remain safely in the home with a set of home and community-based services provided through Medicaid; and the total cost of care to Medicaid in the home setting cannot exceed the cost of inpatient hospital care to Medicaid, for that same individual. 31

37 Project AIDS Care Waiver The Project AIDS Care Waiver is a home and community-based program. The waiver services include: case management, chore services, companion, day health care, education and support, health assessment, substance-abuse treatment, home-delivered meals, homemaker, home modification, massage therapy, personal care, personal emergency response system, pest control, physical therapy, respiratory therapy, respite care, skilled care, specialized medical equipment and supplies, and specialized personal care for foster children. An enrolled Project AIDS Care manager must authorize services. Recipients make an informed choice between hospital or nursing facility care and the home and community-based services provided under this waiver. Covered services varied during the four-year study period. Traumatic Brain Injury/Spinal Cord Injury Waiver The Traumatic Brain Injury/Spinal Cord Injury (TBI/SCI) Waiver is operated by the Department of Health, Brain and Spinal Cord Injury Program. The waiver services include: adaptive health and wellness, assistive technologies, attendant care, behavioral programming, case management, companion services, community support coordination, consumable medical equipment, environmental accessibility adaptations, life skills training, personal adjustment counseling, personal care, and rehabilitation engineering evaluation. To be eligible for the TBI/SCI waiver services, a recipient must be a client of the Brain and Spinal Cord Injury Program, meet at least level II care criteria for nursing facilities, and meet the Supplemental Security Income related Medicaid or Institutional Care Program income and asset requirements. 32

38 Appendix B Description of Program Services Provided to Medically Complex Children Durable Medical Equipment Durable medical equipment (DME) is equipment that can be used repeatedly, serves a medical purpose, and is appropriate for use in the patient s home. Medical supplies are medical or surgical items that are consumable, expendable, disposable or non-durable, and are appropriate for use in the patient s home. Medicaid reimburses for DME and medical supplies provided by Medicaid-participating providers. Medicaid reimbursable DME may be rented or purchased. Medical necessity for DME or supplies must be documented by a prescription, a statement of medical necessity, a plan of care, or a hospital discharge plan. The documentation must be signed and dated by the attending physician and include specific information on the item needed, the duration of the need, and the recipient s diagnosis. Medical Foster Care Medical foster care (MFC) services enable medically-complex children whose parents cannot care for them in their own homes to live and receive medical care in alternative-home settings rather than hospitals or other institutions. The Department of Health, Children s Medical Services (CMS) administers the medical foster care program. The Department of Children and Families (DCF) reimburses the medical foster parent for the child s room, board and other living expenses. Medicaid reimburses the medical foster parent for providing the child with medically necessary care needed in daily living activities. These activities include, but are not limited to, feeding, bathing, administering medications, changing dressings, and turning and positioning the medical foster child. Nursing Facility Services Nursing facility services are 24-hour-a-day nursing and rehabilitation services provided in a facility that is licensed and certified by the Agency to participate in the Medicaid program. Nursing facility services include special care for AIDS patients and medically complex children, reimbursement for swing bed services provided in a rural acute care hospital, and skilled nursing services provided in a hospital-based, skilled nursing unit. A doctor of medicine or osteopathy must order the recipient s care and services. There are two levels of nursing facility care: skilled and intermediate. The Department of Elder Affairs, CARES unit, recommends the level of care for recipient s age 21 and older. The Department of Health, Children s Medical Services, Children s Multidisciplinary Assessment Team recommends the level of care for recipients under the age of 21. Occupational Therapy Occupational therapy (OT) addresses the functional needs of an individual related to the performance of self-help skills, adaptive behavior, and sensory, motor, and postural development. Medicaid reimburses for OT services provided by licensed, Medicaid-participating occupational therapists and by supervised, occupational therapy assistants. Medicaid reimbursable services include evaluation and treatment to prevent or correct physical and emotional deficits or to minimize the disabling effect of these deficits. Typical activities are perceptual motor activity exercise to enhance functional performance, kinetic movement, guidance in the use of adaptive equipment, and other techniques related to improving motor development. The recipient s primary care physician must prescribe therapy treatments. Services are available in the home or other appropriate settings. 33

39 Personal Care Personal Care (PC) services provide medically necessary assistance with activities of daily living that enable a recipient to optimize functional capacity. PC services are designed to enable the recipient to remain in the home in lieu of institutional placement. PC services must be prescribed by the attending physician, supervised by a registered nurse, provided by a home health aide, and be consistent with the physician-approved plan of care. Medicaid reimburses PC services for recipients under the age of 21 who have complex medical problems, and require more individual and continuous care than is available from home health aide visits. All PC services must be service authorized by a Medicaid service authorization nurse prior to the provision of services. Physical Therapy Physical therapy (PT) addresses the development, improvement, or restoration of neuromuscular or sensory motor function, relief of pain, or control of postural deviation to attain maximum performance. Medicaid reimburses for PT services provided by licensed, Medicaid-participating physical therapists and by supervised, physical therapy assistants. Medicaid reimbursable services include the evaluation and treatment related to range-of-motion, muscle strength, functional abilities, and the use of adaptive or therapeutic equipment. Activities include rehabilitation through exercises, massage, the use of equipment, and rehabilitation through therapeutic activities. The recipient s primary care physician must prescribe therapy treatments. These services may be provided in the home or other appropriate setting. Private Duty Nursing Private duty nursing (PDN) services are medically necessary skilled nursing care services consistent with a recipient s medical condition. PDN services must be ordered by the attending physician, documented as medically necessary, provided by a registered nurse or a licensed practical nurse, and consistent with the physician-approved plan of care. Medicaid reimburses PDN for recipients under the age of 21 who have complex medical problems, and who require more individual care than can be provided through a home health nurse visit. PDN services are authorized to supplement care provided by parents and caregivers. Parents and caregivers must participate in providing care to the fullest extent possible. Training may be offered to parents and caregivers to enable them to provide care that they can safely render. Medicaid does not reimburse private duty nursing services provided solely for the convenience of the child, the parents, or the caregiver. Respiratory Therapy Respiratory therapy (RT) is the evaluation and treatment of pulmonary dysfunction. Medicaid reimbursable services include ventilator support, therapeutic use of medical gases, respiratory rehabilitation, management of life support systems, bronchopulmonary drainage, breathing exercises, and chest physiotherapy. Medicaid reimburses for RT services that are personally rendered by licensed registered respiratory therapists. The recipient s primary care physician must prescribe therapy treatments. These services are available in the home or other appropriate setting. Speech Language Pathology Speech language pathology (SLP) services involve the evaluation and treatment of speech-language disorders. Medicaid reimburses for SLP services provided by licensed, Medicaid-participating speechlanguage pathologists and by supervised, speech-language pathologist assistants. SLP services may be rendered to a group of children with a maximum of six children and a minimum of 30 minutes. The recipient s primary care physician must prescribe therapy treatments. These services are available in the home or other appropriate settings. 34

40 Appendix C County Comparisons of Medicaid Services Utilization by Service, FY Durable Medical Equipment Services Escambia Santa Rosa Okaloosa Walton Holmes Jackson Washington Calhoun Gadsden Leon Bay Liberty Wakulla Gulf Franklin Jefferson Hamilton Madison Suwannee Taylor Lafayette Dixie Gilchrist Columbia Baker Union Alachua Bradford Nassau Duval Clay St Johns Putnam Flagler Levy Marion Volusia Percentage of Durable Medical Equipment Beneficiaries by County Fiscal s Pinellas Citrus Hernando Pasco Hillsborough Sumter Charlotte Lee Lake Polk Orange Osceola Glades Hendry Brevard Indian River Manatee Hardee Sarasota DeSoto Seminole Okeechobee St Lucie Highlands Martin Palm Beach Legend 0% - 2% 3% - 5% 6% - 9% 10% - 19% 20% and over Collier Monroe Broward Miami-Dade Developmental Services Waiver Services Escambia Santa Rosa Okaloosa Walton Holmes Jackson Washington Calhoun Gadsden Leon Bay Liberty Wakulla Gulf Franklin Jefferson Hamilton Madison Suwannee Taylor te Lafaye Dixie Gilchrist Columbia Baker Union Alachua Bradford Nassau Duval Clay St Johns Putnam Flagler Levy Marion Volusia Percentage of Developmental Services Waiver Beneficiaries by County Fiscal s Pinellas Citrus Hernando Pasco Hillsborough Sumter Lake Polk Manatee Hardee Sarasota DeSoto Charlotte Seminole Orange Osceola Okeechobee Brevard Indian River St Lucie Highlands Martin Glades Lee Hendry Palm Beach Legend 0% - 2% 3% - 5% 6% - 9% 10% - 19% 20% and over Collier Monroe Broward Miami-Dade 35

41 Occupational Therapy Services Escambia Santa Rosa Okaloosa Walton Holmes Jackson Washington Calhoun Gadsden Leon Bay Liberty Wakulla Gulf Franklin Jefferson Hamilton Madison Suwannee Taylor Lafayette Dixie Gilchrist Columbia Baker Union Alachua Bradford Nassau Duval Clay St Johns Putnam Flagler Levy Marion Volusia Percentage of Occupational Therapy Beneficiaries by County Pinellas Citrus Hernando Pasco Hillsborough Sumter Lake Polk Seminole Orange Osceola Brevard Indian River Fiscal s Manatee Hardee Sarasota DeSoto Charlotte Okeechobee St Lucie Highlands Martin Glades Lee Hendry Palm Beach Legend 0% - 2% 3% - 5% 6% - 9% 10% - 19% 20% and over Collier Monroe Broward Miami-Dade Private Duty Nursing Services Escambia Santa Rosa Okaloosa Walton Holmes Jackson Washington Calhoun Gadsden Leon Bay Liberty Wakulla Gulf Franklin Jefferson Hamilton Madison Suwannee Taylor Lafayette Dixie Gilchrist Columbia Baker Union Alachua Bradford Nassau Duval Clay St Johns Putnam Flagler Levy Marion Volusia Percentage of Private Duty Nursing Beneficiaries by County Pinellas Citrus Hernando Pasco Hillsborough Sumter Lake Polk Seminole Orange Osceola Brevard Indian River Fiscal s Manatee Hardee Sarasota DeSoto Charlotte Okeechobee St Lucie Highlands Martin Glades Lee Hendry Palm Beach Legend 0% - 2% 3% - 5% 6% - 9% 10% - 19% 20% and over Collier Monroe Broward Miami-Dade 36

42 Physical Therapy Services Escambia Santa Rosa Okaloosa Walton Holmes Jackson Washington Calhoun Gadsden Leon Bay Liberty Wakulla Gulf Franklin Jefferson Hamilton Madison Suwannee Taylor Lafayette Dixie Gilchrist Columbia Baker Union Alachua Bradford Nassau Duval Clay St Johns Putnam Flagler Levy Marion Volusia Percentage of Physical Therapy Beneficiaries by County Fiscal s Pinellas Citrus Hernando Pasco Hillsborough Sumter Lake Polk Manatee Hardee Sarasota DeSoto Charlotte Seminole Orange Osceola Okeechobee Brevard Indian River St Lucie Highlands Martin Glades Lee Hendry Palm Beach Legend 0% - 2% 3% - 5% 6% - 9% 10% - 19% 20% and over Collier Monroe Broward Miami-Dade Regional Perinatal Intensive Care Centers Program Services Escambia Santa Rosa Okaloosa Walton Holmes Jackson Washington Calhoun Gadsden Leon Bay Liberty Wakulla Gulf Franklin Jefferson Hamilton Madison Suwannee Taylor Lafayette Dixie Gilchrist Columbia Baker Union Alachua Bradford Nassau Duval Clay St Johns Putnam Flagler Levy Marion Volusia Percentage of Regional Perinatal Intensive Care Centers Beneficiaries by County Pinellas Citrus Hernando Pasco Hillsborough Sumter Lake Polk Seminole Orange Osceola Brevard Indian River Fiscal s Manatee Hardee Sarasota DeSoto Charlotte Okeechobee St Lucie Highlands Martin Glades Lee Hendry Palm Beach Legend 0% - 2% 3% - 5% 6% - 9% 10% - 19% 20% and over Collier Monroe Broward Miami-Dade 37

43 Speech Language Pathology Services Escambia Santa Rosa Okaloosa Walton Holmes Jackson Washington Calhoun Gadsden Leon Bay Liberty Wakulla Gulf Franklin Jefferson Hamilton Madison Suwannee Taylor Lafayette Dixie Gilchrist Columbia Baker Union Alachua Bradford Nassau Duval Clay St Johns Putnam Flagler Levy Marion Volusia Percentage of Speech Language Pathology Beneficiaries by County Pinellas Citrus Hernando Pasco Hillsborough Sumter Lake Polk Seminole Orange Osceola Brevard Indian River Fiscal s Manatee Hardee Sarasota DeSoto Charlotte Okeechobee St Lucie Highlands Martin Glades Lee Hendry Palm Beach Legend 0% - 2% 3% - 5% 6% - 9% 10% - 19% 20% and over Collier Monroe Broward Miami-Dade 38

44 Sumter Sumter Appendix D PPECC Enrollments by Florida County, Various s PPEC Enrollments by Florida County, Escambia Santa Rosa Okaloosa Walton Holmes Washington Bay Jackson Calhoun Gulf Liberty Gadsden Franklin Leon Wakulla Jefferson Madison Taylor Dixie Suwannee Lafayette Prescribed Pediatric Extended Care Services Fiscal Hamilton Gilchrist Levy Pinellas Columbia Alachua Citrus Pasco Baker Union Hernando Bradford Hillsborough Manatee Sarasota Marion Nassau Clay Lake Duval Putnam Charlotte Polk Hardee DeSoto St Johns Flagler Volusia Seminole Orange Osceola Highlands Glades Brevard Okeechobee Indian River St Lucie Martin Lee Hendry Palm Beach Number of PPEC Beneficiaries and Over Collier Monroe Broward Miami-Dade PPEC Enrollments by Florida County, Escambia Santa Rosa Okaloosa Walton Holmes Washington Bay Jackson Calhoun Gulf Liberty Gadsden Franklin Leon Wakulla Jefferson Madison Taylor Dixie Suwannee Lafayette Prescribed Pediatric Extended Care Services Fiscal Hamilton Gilchrist Levy Pinellas Columbia Alachua Citrus Pasco Baker Union Hernando Bradford Hillsborough Manatee Sarasota Marion Nassau Clay Lake Duval Putnam Charlotte Polk Hardee DeSoto St Johns Flagler Volusia Seminole Orange Osceola Highlands Glades Brevard Okeechobee Indian River St Lucie Martin Lee Hendry Palm Beach Number of PPEC Beneficiaries and Over Collier Monroe Broward Miami-Dade 39

45 Sumter PPEC Enrollments by Florida County, Escambia Santa Rosa Okaloosa Walton Holmes Washington Bay Jackson Calhoun Gulf Liberty Gadsden Franklin Leon Wakulla Jefferson Madison Taylor Dixie Suwannee Lafayette Prescribed Pediatric Extended Care Services Fiscal Hamilton Gilchrist Levy Pinellas Columbia Alachua Citrus Pasco Baker Union Hernando Bradford Hillsborough Manatee Sarasota Marion Nassau Clay Lake Duval Putnam Charlotte Polk Hardee DeSoto St Johns Flagler Volusia Seminole Orange Osceola Highlands Glades Brevard Okeechobee Indian River St Lucie Martin Lee Hendry Palm Beach Number of PPEC Beneficiaries and Over Collier Monroe Broward Miami-Dade 40

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