oversight

Lead Poisoning: Federal Health Care Programs Are Not Effectively Reaching At-Risk Children

Published by the Government Accountability Office on 1999-01-15.

Below is a raw (and likely hideous) rendition of the original report. (PDF)

                 United States General Accounting Office

GAO              Report to the Ranking Minority Member,
                 Committee on Government Reform,
                 House of Representatives


January 1999
                 LEAD POISONING
                 Federal Health Care
                 Programs Are Not
                 Effectively Reaching
                 At-Risk Children




GAO/HEHS-99-18
      United States
GAO   General Accounting Office
      Washington, D.C. 20548

      Health, Education, and
      Human Services Division

      B-277635

      January 15, 1999

      The Honorable Henry A. Waxman
      Ranking Minority Member
      Committee on Government Reform
      House of Representatives

      Dear Mr. Waxman:

      This report responds to your request that we review federal activities for ensuring that at-risk
      children receive screening and treatment for lead poisoning. In particular, this report addresses
      the risk of lead poisoning faced by children served by federal health care programs, the extent
      to which children served by these programs have been screened for this condition, reasons why
      screenings may not be occurring, and problems faced by federal health care programs in
      ensuring that children who have been identified as having harmful lead levels in their blood
      receive timely follow-up treatment and other services.

      As arranged with your office, unless you publicly announce its contents earlier, we plan no
      further distribution of this report until 30 days after the date of this letter. We will then send a
      copy to the Secretary of Health and Human Services and others who are interested.

      Please contact me at (202) 512-7119 if you or your staff have any questions. Other GAO contacts
      and major contributors to this report are listed in appendix IX.

      Sincerely,




      Bernice Steinhardt
      Director, Health Services Quality
        and Public Health Issues
Executive Summary


             Lead poisoning, a preventable condition, is one of the most serious
Purpose      environmental health threats to children in the United States. Among
             young children, elevated blood lead levels impair mental and physical
             development. Because most children display no obvious symptoms, the
             best way to detect the condition is through a screening blood test. After
             administering such tests to a representative sample of children aged 1
             through 5 as part of a nationwide health survey conducted between 1991
             and 1994, the Department of Health and Human Services (HHS) estimated
             in 1997 that about 890,000, or 4.4 percent, of the children in that age group
             had harmful levels of lead in their blood.

             Children in low-income families who live in older housing with
             deteriorating lead-based paint are at high risk for lead poisoning. The
             federal government, as a major source of health care funding for the
             low-income population, has set policies that young children who receive
             federally supported health care should receive lead screening services.
             The extent to which federal health care programs are actually screening
             and providing adequate treatment services to children found with harmful
             blood lead levels, however, remains unknown. Consequently, the ranking
             minority member of the House Committee on Government Reform asked
             GAO to address (1) the risk of lead poisoning faced by young children
             served by federal health care programs, (2) the extent to which children
             served by these programs have been screened for this condition, (3) key
             reasons why screenings may not be occurring, and (4) problems that
             federal health care programs face in ensuring that children who have
             harmful lead levels in their blood receive timely follow-up treatment and
             other services.


             Until recently, the Centers for Disease Control and Prevention (CDC), the
Background   HHS agency recommending U.S. policy for lead screening and treatment,
             has stated that virtually all children ages 1 through 5 should receive a
             blood lead test. However, national health surveys that CDC conducts
             periodically have shown a marked decline in the prevalence of elevated
             blood lead levels in recent years, attributed primarily to the regulatory ban
             on lead in gasoline and lead-soldered food cans. The surveys, most
             recently conducted from 1991 through 1994, involve physical examinations
             and interviews for a representative sample of virtually all age groups
             across the country. The physical exams include a blood lead test, and the
             interviews include questions about each child’s participation in federal
             health care programs and their lead screening history. From the most
             recent survey sample, CDC estimated in 1997 that 890,000 children aged 1



             Page 2                                            GAO/HEHS-99-18 Lead Poisoning
                       Executive Summary




                       through 5 had elevated blood lead levels. CDC has set the level of concern
                       for lead toxicity at 10 or more micrograms of lead per deciliter (µg/dl) of
                       blood. Average blood lead levels for children aged 1 through 5 declined
                       from 15 µg/dl during 1976 through 1980 to 2.7 µg/dl during 1991 through
                       1994. Citing this trend, CDC in 1997 changed its lead screening guidelines to
                       recommend that health officials develop statewide plans that target
                       children who are at specific risk.

                       However, HHS policies to screen children participating in federal health
                       care programs still remain in place. The federal government has several
                       health care programs serving low-income children that may provide blood
                       lead screenings. Those included in GAO’s review are as follows:

                   •   Medicaid, a joint federal and state program, is administered at the federal
                       level by the Health Care Financing Administration. This health care
                       financing program for low-income families covers about one-third of the
                       nation’s children aged 1 through 5.
                   •   The Health Center Program, administered by the Health Resources and
                       Services Administration, awards grants to more than 3,000 sites across the
                       nation to provide primary health care services in medically underserved
                       areas. Children served by participating health centers include those
                       covered by Medicaid and an estimated 14 percent of the nation’s uninsured
                       children.

                       GAO also reviewed policies for the Special Supplemental Nutrition Program
                       for Women, Infants, and Children (WIC), administered by the Department
                       of Agriculture, which serves low-income pregnant women and young
                       children at nutritional risk. Research has shown that children at nutritional
                       risk are especially susceptible to lead poisoning. In addition to delivering
                       nutrition services in more than 2,000 local agencies nationwide, this
                       program helps women and children receive preventive health services
                       such as lead screening.


                       GAO’s analysis of CDC’s most recent blood lead level and screening survey
Results in Brief       data shows that the children served by federal health care programs
                       remain at significant risk for elevated blood lead levels. Three-fourths of
                       all the children aged 1 through 5 found to have an elevated blood lead level
                       in CDC’s 1991-94 survey were enrolled in Medicaid or WIC or were within the
                       target population for the Health Center Program. This equates to nearly
                       700,000 children nationwide. More than 8 percent of the surveyed children
                       aged 1 through 5 who were served by federal health care programs had a



                       Page 3                                           GAO/HEHS-99-18 Lead Poisoning
Executive Summary




harmful blood lead level, a rate almost five times the rate for children who
were not in these federal programs.

Despite federal policies, most children in or targeted by federal health care
programs have not been screened. For nearly two-thirds of the surveyed
children aged 1 through 5 identified by CDC as having elevated lead levels,
the blood lead test conducted as part of the CDC survey was the first such
test they had received. Projecting these results nationally, more than
400,000 U.S. children in or targeted by federal health care programs have
undetected elevated blood lead levels. Other data that GAO analyzed for
specific federal health programs tended to corroborate the overall low
screening rates reported in CDC’s survey and also showed that screening
rates vary greatly from state to state and locality to locality.

Screening is often not occurring because federal screening policies are
largely not monitored at the federal and state levels. Within Medicaid, for
example, only about half of all 51 state programs (including the District of
Columbia) that GAO surveyed had screening policies in line with federal
policy in the frequency of required screenings, and many states did not
monitor providers’ lead screening activities. One underlying reason for low
screening rates is the widespread belief among providers that lead
exposure is no longer a problem in their communities. Most state officials
GAO contacted lacked reliable, representative data on the prevalence of
elevated blood lead levels and the extent of screening in their states.
Another problem is that many children are not receiving adequate
preventive health care services, visiting the doctor only when they are
sick.

Follow-up treatment for children identified with elevated blood lead levels
is complex and potentially resource intensive. Recommended services
include follow-up testing, care coordination, and investigations to
determine the source of lead exposure, but there are few national data to
reliably show the extent to which services are provided to lead-poisoned
children. At health centers and state and local health departments visited
across the country, GAO found wide variation in the extent of timely
follow-up. Specific problems hindering the delivery of care included
providers’ missing opportunities to perform follow-up tests and children’s
not returning for follow-up care. Another problem is that most state
Medicaid programs do not reimburse for key treatment services.




Page 4                                           GAO/HEHS-99-18 Lead Poisoning
                             Executive Summary




Principal Findings

Elevated Blood Lead          GAO’s analysis of CDC’s nationally representative survey data shows that a
Levels Remain a              disproportionate number of the children who have elevated blood lead
Significant Problem for      levels are served by federal health care programs. Although about
                             40 percent of surveyed children aged 1 through 5 were receiving benefits
Children Served by Federal   from Medicaid or WIC or were within the target population of the Health
Health Care Programs         Center Program, more than 77 percent of the children who had elevated
                             blood lead levels in the survey were in or targeted by these programs. This
                             represents 688,000 of the 890,000 children aged 1 through 5 nationwide
                             who were projected to have elevated levels of lead in their blood.

                             Among surveyed children aged 1 through 5 enrolled in or targeted by
                             federal health care programs, the rate (or prevalence) of elevated blood
                             lead levels was 8.4 percent. This rate was nearly five times the rate for
                             children not in these programs. Analyzing data by individual federal health
                             care programs, GAO found that among children aged 1 through 5 enrolled in
                             Medicaid, the prevalence was greater than 8 percent. For children aged 1
                             through 5 in low-income and uninsured families (and thus within the target
                             population of the Health Center Program), the prevalence was 6 percent.
                             For children aged 1 through 5 receiving WIC benefits, the prevalence was
                             almost 12 percent.


Most Children Served by      The CDC survey and Medicaid data also show that children served by
Federal Health Care          federal health care programs are largely not receiving the lead screenings
Programs Are Not Being       required by federal policies. Reports from parents, guardians and other
                             respondents in CDC’s 1991-94 survey show that less than 20 percent of
Screened for Lead            children served by federal health care programs had been screened for
                             lead before participating in the survey. A separate analysis of Medicaid
                             billing data for 1994 and 1995 showed a similar overall screening rate in
                             Medicaid fee-for-service programs for the 15 states where data were
                             available.

                             GAO also found that screening has not been sufficient to identify most of
                             the children who were in federal health care programs and had elevated
                             blood lead levels. CDC survey data show that most of those projected to
                             have elevated blood lead levels have not been so identified. In other
                             words, the approximate size of the group is known, but the specific
                             children are not. The statistical projections from the survey indicate that




                             Page 5                                            GAO/HEHS-99-18 Lead Poisoning
                      Executive Summary




                      of the estimated 688,000 children aged 1 through 5 who have elevated
                      blood lead levels and are in or targeted by federal health care programs,
                      more than 400,000 have never been screened.

                      Medicaid data and GAO reviews of health center medical records
                      demonstrate that screening varies from location to location. Billing data
                      from 15 state Medicaid fee-for-service programs show that state-level
                      screening for 1- and 2-year-old children enrolled in Medicaid for a year or
                      longer ranged from less than 1 percent to a high of 46 percent. GAO samples
                      of medical records at seven federally supported health centers across the
                      country, selected because they served high numbers of children in
                      Medicaid and had high numbers of old houses in their area, showed that
                      most of the selected health centers were screening at higher rates than
                      those found in the CDC survey and the 15-state Medicaid information.
                      However, rates still varied—ranging from no children screened at one
                      health center to all children screened at two centers.


Screening Rates Are   Several problems contribute to the low screening rates found in national
Affected by Lack of   and state data. First, federal lead screening policies are often not followed
Oversight and Other   or monitored, as exemplified by the partial implementation of policies by
                      many state and local programs. States have often adopted less rigorous
Problems              policies, and even these policies are often not monitored. A GAO
                      nationwide survey of Medicaid programs found that almost half of the
                      states had adopted policies less rigorous than the federal policy for
                      screening children in Medicaid (in the frequency of required screenings),
                      and more than one-third were not monitoring providers’ lead screening
                      activities. Similarly, three of seven health centers that GAO visited were not
                      complying with all federal lead screening policies. In the states that GAO
                      reviewed, reported screening was highest where states had their own
                      screening laws together with mechanisms to ensure screening (such as
                      requiring proof of screening as a condition of entering daycare or school).

                      GAO’s review and other research point to two other—and more
                      underlying—problems that hinder screening. The first is that many
                      physicians perceive that lead poisoning is not prevalent or serious. A
                      second problem is that many children are still not receiving preventive
                      health care services and hence miss the opportunity for blood lead
                      screenings. For example, health officials said a significant problem was
                      that some families do not seek preventive care services, visiting providers
                      only when children are sick.




                      Page 6                                            GAO/HEHS-99-18 Lead Poisoning
                            Executive Summary




                            Better state and local data on the prevalence of, and screening for,
                            elevated blood lead levels and improved federal, state, and local
                            coordination between lead screening and other preventive care activities
                            are potential areas of action to improve screening. Most state Medicaid
                            agencies and many state lead poisoning prevention programs GAO
                            contacted lacked reliable data showing the prevalence of elevated blood
                            lead levels or the extent of screening of children within the Medicaid
                            program or the state. HHS initiatives to improve the extent to which
                            children receive other preventive health care services, such as
                            immunizations, could provide avenues and models for improving
                            screening if initiatives were coordinated. While the increasing number of
                            Medicaid managed care arrangements provides another opportunity to
                            improve screening, recent research indicates that more than half of state
                            Medicaid managed care contracts have not addressed lead screening
                            responsibilities.


Several Problems Hinder     For many children who have elevated blood lead levels, several problems
Efforts to Provide Timely   hinder the efforts of federally supported health care programs to ensure
Treatment and Follow-Up     timely treatment and follow-up services. No national database exists for
                            reliably determining the extent to which recommended follow-up
Services                    services—such as follow-up testing to ensure that levels decline, care
                            coordination, and environmental investigations to determine the source of
                            lead—are actually provided. The information GAO was able to develop
                            from health centers and health departments in seven states, while limited,
                            indicates gaps in providing needed follow-up, including timely retesting to
                            determine if the problem is continuing.

                            GAO’s medical record review and interviews with health center and health
                            department officials found barriers to providing follow-up testing and
                            other services to children who have elevated blood lead levels, including
                            the problem of providers missing opportunities to perform timely
                            follow-up tests and difficulties in tracking a transient population of
                            children. Another key problem hindering the provision of follow-up
                            services was policy issues related to the resource-intensiveness of
                            recommended treatments for children who have elevated blood lead
                            levels. Federal Medicaid law states that Medicaid’s Early and Periodic
                            Screening, Diagnosis, and Treatment program services must cover
                            treatment or other forms of medical assistance necessary to correct or
                            ameliorate conditions identified through screens, but because lead
                            poisoning is an environmentally caused condition, determining
                            appropriate “medical treatments” for elevated blood lead levels can be



                            Page 7                                          GAO/HEHS-99-18 Lead Poisoning
                  Executive Summary




                  difficult. GAO’s review found that many states are not covering follow-up
                  services considered important to treat a child who has an elevated lead
                  level. For example, while HHS has for years indicated that lead
                  investigation services are integral to treating a lead-poisoned child, GAO’s
                  survey shows that less than half the state Medicaid programs have policies
                  to pay for such services. Most programs also do not have formal
                  agreements with other agencies coordinating the provision of follow-up
                  services. Such formal coordination may be increasingly important as more
                  children are covered by Medicaid managed care, but recent research
                  indicates that Medicaid agencies have largely not considered how
                  managed care providers will need to work with others to provide
                  follow-up services to children who have elevated blood lead levels.


                  Specific recommendations to the Secretary of HHS for improving federal
Recommendations   support for lead poisoning prevention include (1) developing better state
                  and local information about the extent to which children have elevated
                  blood lead levels, (2) facilitating and monitoring screening for children in
                  federal health care programs, (3) improving managed care contracts,
                  (4) clarifying what services should be available to children identified as
                  having elevated blood lead levels, and (5) enhancing federal efforts to
                  coordinate lead screening and treatment activities with those of other
                  programs serving at-risk children.


                  In its written response to a draft of this report, HHS indicated general
Agency Comments   agreement with the recommendations and discussed steps that were
                  planned or under way to implement many of them. The response indicated
                  that HHS was committed to ensuring that children served by federal health
                  care programs receive lead screening and necessary treatment services.
                  HHS’ response also made a number of suggestions regarding the wording in
                  the draft. These suggestions have been incorporated into the report where
                  appropriate.




                  Page 8                                            GAO/HEHS-99-18 Lead Poisoning
Page 9   GAO/HEHS-99-18 Lead Poisoning
Contents



Executive Summary                                                                                  2


Chapter 1                                                                                         14
                         The Problem of Lead Exposure in Children                                 14
Introduction             Prevalence Has Declined Markedly, but Many Children Are Still            15
                           Affected
                         Sources of Lead Exposure                                                 15
                         Federal Goals for Reducing Childhood Lead Poisoning                      16
                         Objectives, Scope, and Methodology                                       19


Chapter 2                                                                                         23
                         Results for Surveyed Children Enrolled in Medicaid                       24
Elevated Blood Lead      Results for Surveyed Children in WIC                                     24
Levels Remain a          Results for Surveyed Children Within the Health Center Target            25
                           Population
Significant Problem
for Children Served by
Federal Health Care
Programs
Chapter 3                                                                                         26
                         Federal Policies Are Designed to Ensure That Children Are                26
Most Children Served       Screened
by Federal Health        National Survey Data Show That Only One in Five Children Has             27
                           Been Screened
Care Programs Are        Insufficient Screening Means Many Children Remain                        29
Not Being Screened         Undiagnosed
for Elevated Blood       Screening Rates Vary by Location                                         30
Lead Levels
Chapter 4                                                                                         33
                         Federal Oversight Has Not Ensured That Screening Policies Are            33
Screening Rates Are        Fully Implemented
Affected by Lack of      Perceptions of the Problem’s Seriousness Vary Greatly and Affect         37
                           Decisions to Screen
Oversight and Other      Difficulties in Providing Preventive Care Services Keeps                 41
Problems                   Screening Rates Low
                         Better Data on the Prevalence of Elevated Blood Lead Levels and          42
                           Better Program Coordination Could Help Improve Screening




                         Page 10                                        GAO/HEHS-99-18 Lead Poisoning
                      Contents




Chapter 5                                                                                       49
                      Recommended Follow-Up Services Can Be Complex and                         49
Several Problems        Resource Intensive
Hinder Timely         National Data Are Lacking, but Health Centers and Health                  51
                        Departments Vary in Providing Timely Services
Follow-Up Treatment   Barriers to Ensuring That Children Who Have Elevated Blood                55
and Other Services      Lead Levels Receive Timely Follow-Up
                      State Medicaid Programs Often Do Not Reimburse or Formally                57
                        Coordinate Key Follow-Up Services


Chapter 6                                                                                       61
                      Conclusions                                                               61
Conclusions,          Recommendations                                                           62
Recommendations,      Agency Comments and Our Evaluation                                        64
and Agency
Comments and Our
Evaluation
Appendixes            Appendix I: Methodology and Results of NHANES Data Analysis               68
                      Appendix II: Methodology and Results of Medicaid Billing Data             73
                        Analysis
                      Appendix III: Methodology for Our Questionnaire to Medicaid               76
                        Directors
                      Appendix IV: Federal Guidance and Policies for Screening and              77
                        Treating Children for Elevated Blood Lead Levels
                      Appendix V: Methodology and Results of Screening of Children at           80
                        Health Centers
                      Appendix VI: Methodology and Results for Follow-Up Testing of             82
                        Children With Elevated Blood Lead Levels Seen at Health Centers
                      Appendix VII: State Requirements Supporting CDC Grantees’                 85
                        Efforts to Ensure That Children Are Screened and Provided
                        Follow-Up Services
                      Appendix VIII: Comments From HHS                                          91
                      Appendix IX: GAO Contacts and Staff Acknowledgements                     105


Tables                Table 3.1: Estimated Lead Screening Rates for Children Aged 1             28
                        Through 5
                      Table 3.2: Lead Screening of 1- and 2-Year-Olds in 1996 at Seven          32
                        Health Centers




                      Page 11                                         GAO/HEHS-99-18 Lead Poisoning
          Contents




          Table 4.1: State Lead Screening Monitoring of Children in                35
            Medicaid
          Table 5.1: Extent to Which Children Who Had Elevated Blood               52
            Lead Levels Did Not Receive Follow-Up Tests at Six Health
            Centers
          Table 5.2: Percentage of Untimely Follow-Up Blood Lead Tests at          53
            Six Health Centers
          Table 5.3: Health Department Follow-Up and Monitoring                    54
            Activities for Children Who Had Blood Lead Levels of 20 µg/dl or
            Higher
          Table 5.4: Missed Opportunities to Provide Follow-Up Tests               56
          Table I.1: Estimated Number of Children Aged 1 Through 5                 71
          Table I.2: Estimated Number of Children Aged 1 Through 5 Who             71
            Had Elevated Blood Lead Levels
          Table I.3: Estimated Number of Children Aged 1 Through 5                 72
            Screened for Elevated Blood Lead Levels
          Table I.4: Estimated Number of Children Aged 1 Through 5 With            72
            Undetected Elevated Blood Lead Levels
          Table II.1: Billing Rates of 15 State Medicaid Programs for              75
            Laboratory Tests for Blood Lead Levels in 1994-95
          Table IV.1: Federal Guidance and Policies for Blood Lead                 77
            Screening
          Table IV.2: Federal Guidance and Policies for Blood Lead                 79
            Treatment
          Table V.1: Screening for 1- and 2-Year-Old Children at Seven             81
            Health Centers in 1996
          Table VI.1: Follow-Up Testing Provided to Children Whose                 84
            Elevated Blood Lead Levels Were Identified by Seven Health
            Centers in 1996
          Table VII.1: 1996 Screening and Reporting Policies and Reported          88
            Screening Rates and Prevalence for Sites We Visited
          Table VII.2: Seven Sites’ Requirements for Addressing Lead               90
            Hazards in Housing


Figures   Figure 3.1: Estimated Number of Children Aged 1 Through 5                30
            Years Who Have Undetected Elevated Blood Lead Levels by
            Federal Health Care Assistance Category
          Figure 3.2: State Medicaid Billing Rates for Blood Lead                  31
            Laboratory Tests for Children Aged 1 and 2 in 1994 and 1995




          Page 12                                        GAO/HEHS-99-18 Lead Poisoning
Contents




Abbreviations

ATSDR      Agency for Toxic Substances and Disease Registry
CDC        Centers for Disease Control and Prevention
EPA        Environmental Protection Agency
EPSDT      Early and Periodic Screening, Diagnosis, and Treatment
HCFA       Health Care Financing Administration
HHS        Department of Health and Human Services
HRSA       Health Resources and Services Administration
HUD        Department of Housing and Urban Development
NHANES     National Health and Nutrition Examination Survey
USDA       Department of Agriculture
WIC        Special Supplemental Nutrition Program for Women,
                Infants, and Children


Page 13                                       GAO/HEHS-99-18 Lead Poisoning
Chapter 1

Introduction


                       Despite dramatic reductions in blood lead levels over the past 20 years,
                       lead poisoning continues to be a significant health risk for young children.
                       Many children, especially those living in older housing or who are poor,
                       are still being harmed by exposure to lead. The Centers for Disease
                       Control and Prevention (CDC) estimates that 890,000 children aged 1
                       through 5 in the United States have blood lead levels associated with
                       harmful effects on their ability to learn. Lead poisoning has long been
                       considered to be the most serious environmental health threat to children
                       in the United States.


                       Lead is highly toxic and affects virtually every system of the body. At
The Problem of Lead    extremely high levels, lead can cause coma, convulsions, and death. At
Exposure in Children   lower levels, studies have shown that lead can cause reductions in IQ and
                       attention span, reading and learning disabilities, hyperactivity, and
                       behavioral problems. Relatively low lead levels are typically not
                       accompanied by overt, identifiable symptoms. Because most children who
                       have elevated blood lead levels have no obvious symptoms, a blood test is
                       the best screening method to identify harmful conditions.

                       Lead is most hazardous to the nation’s roughly 24 million children under
                       the age of 6, whose still-developing nervous systems are particularly
                       vulnerable to lead and whose normal play activities expose them to
                       lead-contaminated dust and soil. One- and 2-year-old children are at
                       greatest risk because of normal hand-to-mouth activity and the greater
                       mobility during the second year of life that gives them more access to lead
                       hazards.

                       New and increased knowledge of the health effects of exposure to lead
                       has led to concern about lead at levels once considered safe. In
                       October 1991, the Department of Health and Human Services (HHS) revised
                       its level of concern for lead poisoning from the previous threshold of 25
                       micrograms of lead per deciliter of blood (µg/dl) to 10 µg/dl. This change
                       was based on scientific evidence indicating that adverse health effects
                       such as impaired learning can occur at levels as low as 10 µg/dl.1 At this
                       level, CDC, the HHS agency responsible for recommending U.S. policy for



                       1
                        The National Research Council’s Committee on Measuring Lead in Critical Populations generally
                       concurred with CDC in the selection of 10 µg/dl as the concentration of concern in children. According
                       to the committee, evidence is growing that even very small exposure to lead can produce subtle effects
                       in humans. Therefore, as lead toxicity becomes better understood, future guidelines may establish an
                       even lower level of concern. See National Research Council, Measuring Lead Exposure in Infants,
                       Children, and Other Sensitive Populations (National Academy Press, 1993).



                       Page 14                                                          GAO/HEHS-99-18 Lead Poisoning
                     Chapter 1
                     Introduction




                     screening young children for lead poisoning, considers blood lead levels to
                     be “elevated” and recommends various actions.


                     While the prevalence of children who have elevated lead levels and the
Prevalence Has       average blood lead levels for the population as a whole have declined
Declined Markedly,   dramatically over the past two decades, the number of children who have
but Many Children    elevated blood lead levels is still significant. Between the late 1970s and
                     early 1990s, the prevalence of U.S. children aged 1 through 5 years who
Are Still Affected   had elevated blood lead levels dropped from 88 percent to 4.4 percent. HHS
                     and others consider the decline in blood lead levels, associated with the
                     regulatory and voluntary bans on the use of lead in gasoline, household
                     paint, food and drink cans, and plumbing systems, to be a major
                     achievement. Despite this achievement, however, CDC estimated in 1997
                     that about 890,000 children aged 1 through 5 had elevated blood lead
                     levels.2 Research also indicates that the risk for lead exposure remains
                     disproportionately high for some groups, including children who are poor,
                     non-Hispanic black, or Mexican American or are living in large
                     metropolitan areas or in older housing. Identifying these children and
                     ensuring that they receive the services they need is a significant public
                     health challenge.


                     Children in the United States are exposed to lead primarily by the normal
Sources of Lead      activity of putting their hands, toys, or other objects in their mouths and,
Exposure             to a lesser extent, through inhalation. Because lead is ubiquitous in
                     industrial societies, there are many sources and pathways of lead
                     exposure.

                     Since lead has been removed from gasoline and food cans, CDC believes
                     that its foremost source in the environment of young children is
                     lead-based house paint. Other major sources are lead-contaminated dust
                     and soil. House dust is often contaminated by lead-based paint that is
                     peeling or deteriorating or disturbed during home renovation or the
                     preparation of painted surfaces for repainting without proper safeguards.
                     Soil contamination can be traced back to deteriorating exterior paint or
                     past widespread use of leaded gasoline.

                     Lead was a major ingredient in most interior and exterior oil house paint
                     before 1950 and was still used in some paints until 1978, when the
                     residential use of lead paint was banned. The Department of Housing and

                     2
                      Chapter 2 discusses how CDC made this estimate.



                     Page 15                                            GAO/HEHS-99-18 Lead Poisoning
                     Chapter 1
                     Introduction




                     Urban Development (HUD) estimates that three-quarters of pre-1980
                     housing units contain some lead-based paint, and the likelihood, extent,
                     and concentration of lead-based paint increase with the age of the
                     building. In 1995, a federal task force on lead-based paint in the United
                     States estimated that, in all likelihood, somewhere between 5 million and
                     15 million housing units (of around 90 million occupied units nationwide)
                     contained lead-based paint hazards, of which only a portion were occupied
                     by families with children under age 6 at any given time.3 However, because
                     families with young children—particularly those in rental housing—tend
                     to move frequently, far more units are occupied by children under age 6
                     than is shown by the point-in-time estimates of these units.

                     Other, usually less common, sources of lead in a child’s environment
                     include lead-contaminated drinking water (where lead solder and
                     sometimes lead pipes were used in the municipal water system, in the
                     child’s home, or both), imported ceramic tableware with lead glaze, old
                     and imported toys or furniture painted with lead-based paint, the clothing
                     of parents whose work or hobby involves high levels of lead, and even
                     home remedies used by some ethnic groups.


                     Recognizing that tackling the problem of lead poisoning in children will be
Federal Goals for    a long-term effort, HHS published a strategic plan in 1991 calling for the
Reducing Childhood   elimination of childhood lead poisoning in 20 years—by the year 2011.4
Lead Poisoning       The strategic plan stated that increased childhood lead poisoning
                     prevention activities and national surveillance for elevated lead levels are
                     essential parts of a national strategy to eliminate childhood lead poisoning.
                     HHS reiterated its commitment to eliminating childhood lead poisoning by
                     2011 by including it as one of the objectives for CDC in its fiscal year 1999
                     performance plan to the Congress5.

                     Among its department-wide Healthy People 2000 objectives, HHS also
                     established goals to (1) have no children under age 6 with blood lead
                     levels exceeding 25 µg/dl, and (2) have no more than 300,000 children


                     3
                      The Lead-Based Paint Hazard Reduction and Financing Task Force was created under title X of the
                     Housing and Community Development Act of 1992. The task force was created to make
                     recommendations on lead-based paint hazard reduction and financing. See Putting the Pieces
                     Together: Controlling Lead Hazards in the Nation’s Housing, Report of the Lead-Based Paint Hazard
                     Reduction and Financing Task Force, HUD-1547-LBP (Washington, D.C.: July 1995).
                     4
                      Strategic Plan for the Elimination of Childhood Lead Poisoning (Washington, D.C.: HHS, 1991).
                     5
                     HHS, CDC, Fiscal Year 1999 Justification of Estimates for Appropriations Committees (Washington,
                     D.C.: n.d.).



                     Page 16                                                          GAO/HEHS-99-18 Lead Poisoning
                                  Chapter 1
                                  Introduction




                                  under age 6 with blood lead levels exceeding 15 µg/dl by 2000.6 For its
                                  Healthy People 2010 objectives, HHS has drafted a more ambitious goal
                                  than that established for 2000: No children aged 1 through 5 should have
                                  blood lead levels exceeding 10 µg/dl.7


Many Federal Agencies Are         Reflecting the complexity of childhood lead exposure and treatment,
Involved in Identifying and       numerous federal agencies have responsibilities for screening and
Treating Childhood Lead           treatment. Within HHS, these activities are centered on the guidelines and
                                  grant programs of CDC, the Medicaid program administered by the Health
Poisoning                         Care Financing Administration (HCFA), and the health centers funded by
                                  the Health Resources and Services Administration (HRSA).

                              •   CDC  is the federal agency responsible for issuing recommendations for
                                  screening and treating young children for lead poisoning. CDC gathers
                                  information on the extent of lead poisoning under the National Health and
                                  Nutrition Examination Survey (NHANES), a survey that gathers nationally
                                  representative data on the health and nutrition of the U.S. population
                                  through direct physical examinations and interviews. CDC also administers
                                  the Childhood Lead Poisoning Prevention and Surveillance Grant Program,
                                  awarding about $27 million in grants to more than 53 state and local public
                                  health departments in fiscal year 1998. The CDC grant program was
                                  authorized by the Lead Contamination Control Act of 1988 and was
                                  amended by the Preventive Health Amendments of 1992. CDC is required to
                                  report annually to the Congress on the number of children screened, the
                                  age and racial or ethnic status of the children screened, the severity of the
                                  extent of children’s blood lead levels, and the sources of payment for the
                                  screenings.
                              •   Medicaid is a major health care financing program for low-income
                                  families. As a joint federal and state program, Medicaid funds medical care
                                  for about one-third of all children aged 1 through 5 in the United States.
                                  HCFA’s Medicaid policy for addressing childhood lead poisoning prevention
                                  was established by the Omnibus Budget Reconciliation Act of 1989, which
                                  required that Medicaid’s Early and Periodic Screening, Diagnosis, and
                                  Treatment (EPSDT) services include blood lead laboratory tests appropriate
                                  for age and risk factors.8 EPSDT services also include treatment or other
                                  forms of medical assistance for children who have elevated blood lead
                                  levels. While some Medicaid services are provided under a traditional

                                  6
                                  National Center for Health Statistics, Healthy People 2000 Review 1995-96 (Hyattsville, Md.: Public
                                  Health Service, 1996).
                                  7
                                   The Healthy People 2010 initiative was in draft form at the time of our review.
                                  8
                                   EPSDT is a comprehensive prevention and treatment program for Medicaid recipients under 21 years
                                  of age.


                                  Page 17                                                            GAO/HEHS-99-18 Lead Poisoning
    Chapter 1
    Introduction




    fee-for-service arrangement, at least 40 states also contracted with
    managed care organizations to provide health care services to some
    children covered by Medicaid in 1997.9
•   HRSA’s Health Center Program supports more than 3,000 health center sites
    that provide primary care services, including lead screening and treatment,
    in medically underserved areas.10 Federal funding for the Health Center
    Program exceeded $820 million in fiscal year 1998. The Public Health
    Service Act defines required primary health services for health centers as
    including screenings for elevated blood lead levels. The act requires health
    centers to provide these services to all residents of the area served by a
    center, and the centers’ target population includes families whose incomes
    are less than 200 percent of the federal poverty level. Approximately 85
    percent of health center patients are at this income level or below. In 1997,
    1.2 million children under age 5 received care at health centers. Four of
    every 10 patients seen at these health centers in 1997 were uninsured, and
    more than 3 of every 10 were covered by Medicaid. HRSA provided
    estimates that health centers served around 14 percent of the nation’s
    uninsured children in 1995.

    Other federal programs help address childhood lead poisoning, but the
    extent of their contribution is generally unknown. HHS’ Maternal and Child
    Health Block Grant may fund lead poisoning prevention activities in some
    states that have identified lead poisoning as a critical health concern. Head
    Start, another program that HHS administers, also may fund lead
    screenings. Head Start’s primary goal is to improve the social competence
    of children in low-income families. To support this goal, Head Start
    delivers a wide range of services to disadvantaged young children, serving
    about 782,000 children in program year 1996-97. These services include
    medical and nutrition services such as lead screening.

    The Department of Agriculture’s (USDA) Special Supplemental Nutrition
    Program for Women, Infants, and Children (WIC) has also been involved in
    lead screening for children. WIC was established to counteract the negative
    effects of poverty on prenatal and pediatric health and combines direct
    nutritional supplementation, nutrition education and counseling, and

    9
     The State Children’s Health Insurance Program, established under the Balanced Budget Act of 1997 to
    address the problem of uninsured children, will provide another means of federal support for
    childhood lead poisoning prevention. States can expand their current Medicaid program, establish a
    new program, or implement a combination of the two approaches.
    10
      The Health Center Program, authorized under section 330 of the Public Health Service Act, was
    formerly four separate programs: community health centers, migrant health centers, homeless health
    centers, and centers for residents of public housing. Before the Health Center Consolidation Act of
    1996 (P.L. 104-299, Oct. 11, 1996) these programs were authorized under sections 329, 330, 340, and
    340A of the Public Health Service Act.



    Page 18                                                          GAO/HEHS-99-18 Lead Poisoning
                     Chapter 1
                     Introduction




                     increased access to health care and social service providers for pregnant,
                     breastfeeding, and postpartum women and their infants and children up to
                     5 years of age. While the cornerstone of WIC’s mission is to provide
                     nutrition services, WIC agencies are also charged with assisting WIC
                     participants to obtain and use preventive health care services. By
                     providing on-site health services or referring to other agencies, WIC links
                     participants to appropriate health-care providers. Such services may
                     include lead screening.

                     HUD  also administers a grant program to identify and control lead-based
                     paint hazards in low-income privately owned housing. From 1992 to 1995,
                     HUD awarded $280 million to state and local governments for this purpose.
                     In fiscal year 1996, it awarded an additional $55 million to 20 grantees. The
                     Environmental Protection Agency (EPA) regulates work practice standards
                     for lead hazard evaluation and control, develops training courses, sets
                     minimum requirements for contractor training and qualification, makes
                     grants to states and approves state programs for certifying lead
                     contractors and accrediting trainers, and defines hazardous levels of lead
                     in dust, paint, and bare soil. EPA’s grant program had awarded $36 million
                     to 46 states, the District of Columbia, and 27 Native American tribal
                     nations as of February 1997.


                     The ranking minority member of the House Committee on Government
Objectives, Scope,   Reform and Oversight asked us to address
and Methodology
                     1. the risk of lead poisoning faced by young children served by federal
                     health care programs,

                     2. the extent to which children in these programs have been screened for
                     this condition,

                     3. key reasons why screenings may not be occurring, and

                     4. problems that federal health care programs face in ensuring that
                     children who have been determined to have harmful lead levels in their
                     blood receive timely follow-up treatment and other services.

                     To address these objectives, we reviewed relevant legislation, studies, and
                     policy documents and interviewed officials from (1) CDC, HCFA, HRSA’s
                     Bureaus of Primary Health Care and Maternal and Child Health, and HHS’
                     Administration of Children and Families; (2) USDA, HUD, EPA, the Agency for



                     Page 19                                           GAO/HEHS-99-18 Lead Poisoning
Chapter 1
Introduction




Toxic Substances and Disease Registry, and the Association of State and
Territorial Health Officials; (3) health centers receiving federal grant
funds; (4) state and local lead poisoning prevention programs; (5) the
National Lead Information Center, the Alliance to End Childhood Lead
Poisoning, and other experts in lead poisoning prevention; (6) the
American Academy of Pediatrics and other health care providers; and
(7) programs the director of the National Lead Information Center cited as
models for treating children for lead exposure—Montefiore Medical
Center in the Bronx, New York, the Children’s Hospital in Boston,
Massachusetts, and the Kennedy Krieger Institute in Baltimore, Maryland.

To assess the degree of harmful lead levels among young children in
federal health care programs as well as the extent to which these children
have been screened for lead poisoning, we analyzed data from CDC’s most
recently released NHANES.11 This survey contains nationally representative
information on the health and nutrition of the U.S. population gathered
through direct physical examinations and interviews. Our February 1998
report and May 1998 letter to the ranking minority member of the House
Committee on Government Reform and Oversight contained the initial
results of our analysis of the NHANES related to the Medicaid population.12
The results pertaining to the objectives in this comprehensive review are
incorporated in this report. Appendix I explains in further detail our
methodology for analyzing the NHANES data.

To determine the percentage of children covered by Medicaid who
received a blood lead test in selected states, we analyzed data in HCFA’s
State Medicaid Research File for 15 states. Appendix II explains in further
detail our methodology for analyzing the Medicaid billing data. To assess
state Medicaid policies and procedures, we sent a questionnaire to the
director of the Medicaid program in all 50 states and the District of
Columbia. We received a 100-percent response rate from Medicaid
directors reporting on (1) program coverage of services for children who
have elevated blood lead levels, (2) the availability of data on the
prevalence of elevated blood lead levels in the Medicaid population,
(3) Medicaid or other state monitoring of lead screening services, and
(4) Medicaid or other state monitoring of treatment for elevated lead
levels. The respondents also provided copies of their state Medicaid

11
 The NHANES has been conducted periodically since 1960. This analysis is from Phase 2 (1991-94) of
NHANES III, HHS,CDC, National Center for Health Statistics, National Health and Nutrition
Examination III, 1988-94, NCHS CD-ROM, Series 11, No. 1A, ASCII Version, July 1997.
12
 Medicaid: Elevated Blood Lead Levels in Children (GAO/HEHS-98-78, Feb. 1998) and Children’s
Health: Elevated Blood Lead Levels in Medicaid and Hispanic Children (GAO/HEHS-98-169R,
May 1998).



Page 20                                                         GAO/HEHS-99-18 Lead Poisoning
Chapter 1
Introduction




policies and any formal agreements they had with health departments,
housing departments, or others for ensuring that lead screening and
treatment services were provided to children enrolled in Medicaid.
Appendix III explains in further detail our survey methodology.

Although we interviewed HHS officials who administer the Maternal and
Child Health Block Grant program and the Head Start program, our work
with these programs was limited. While they can support childhood lead
poisoning prevention activities, national data on how much lead screening
is conducted through the block grants or Head Start are not available.
Many of the children served by these programs are also served by the
programs we did review—that is, they are served by the CDC grant
programs, are covered by Medicaid, or live in areas served by health
centers receiving federal grants. Because our focus was on federal
activities to screen and treat children for elevated blood lead levels, we did
not assess the HUD and EPA lead programs. We previously reported on
issues concerning HUD and EPA programs related to lead poisoning
prevention.13 Appendix IV contains further details on federal screening and
treatment policies.

We also visited seven federally supported health centers in Atlanta,
Georgia; Everett, Washington; New Bedford, Massachusetts; Brooklyn,
New York; Philadelphia, Pennsylvania; San Antonio, Texas; and
Watsonville, California, for the purpose of reviewing two samples of
medical records at each health center. We assessed (1) the screening of 1-
and 2-year-old children visiting the center in 1996 and (2) the follow-up of
children identified with elevated blood lead levels in 1996. We selected the
health centers for a mix of geographic areas and to target areas where
children had a higher risk for lead exposure, based on the number of
children covered by Medicaid seen at the health centers in 1996 and the
number of houses built before 1950 in the centers’ zip codes. See
appendixes V and VI for more details about our methodology for the
medical record review at the health centers.

We met with officials from six state and city childhood lead poisoning
prevention and surveillance programs that received CDC grant funding.

13
  See Lead-Based Paint Hazards: Abatement Standards Are Needed to Ensure Availability of Insurance
(GAO/RCED-94-231, July 15, 1994), Lead-Based Paint Poisoning: Children in Section 8 Tenant-Based
Housing Not Adequately Protected From Lead Poisoning (GAO/RCED 94-137, May 13, 1994), Toxic
Substances: Status of EPA’s Efforts to Develop Lead Hazard Standards (GAO/RCED-94-114, May 16,
1994), Lead-Based Paint Poisoning: Children Not Fully Protected When Federal Agencies Sell Homes
to Public (GAO/RCED-93-38, Apr. 15, 1993), Lead-Based Paint Poisoning: Children in Public Housing
Are Not Adequately Protected (GAO/RCED-93-138, Sept. 17, 1993), and Toxic Substances: Federal
Programs Do Not Fully Address Some Lead Exposure Issues (GAO/RCED-92-186, May 15, 1992).



Page 21                                                        GAO/HEHS-99-18 Lead Poisoning
Chapter 1
Introduction




These programs, generally located near the health centers we visited,
included programs run by the states of California, Massachusetts, Texas,
and Washington as well as New York City and Philadelphia. At each
program, we discussed their activities and assessed the extent to which
they were tracking children who had higher blood lead levels (20 µg/dl or
higher) who were in our record reviews at the health centers we visited.
Where applicable, we also discussed follow-up treatment activities with
local health departments. We also discussed factors that aided or impeded
these follow-up activities. Finally, we obtained copies of relevant
legislation and regulations in effect at the time of each visit (conducted
between late 1997 and early 1998). Appendix VII contains further details
about our methodology and summarizes information obtained on state and
local requirements.

We carried out our review from June 1997 through December 1998 in
accordance with generally accepted government auditing standards.




Page 22                                        GAO/HEHS-99-18 Lead Poisoning
Chapter 2

Elevated Blood Lead Levels Remain a
Significant Problem for Children Served by
Federal Health Care Programs
               Our analysis of CDC survey data shows that elevated blood lead levels
               remain a significant problem for children who are served by federal health
               care programs. The children participating in CDC’s nationally
               representative survey who were enrolled in or targeted by federal health
               care programs were much more likely than other children to have elevated
               blood lead levels. Three-fourths of the children in the survey found to have
               elevated blood lead levels were enrolled in Medicaid or WIC or were
               targeted by HRSA’s Health Center Program.14

               Data CDC gathered in its NHANES survey provided the basis for its estimate
               that elevated blood lead levels are found in about 890,000, or 4.4 percent,
               of U.S. children aged 1 through 5.15 Most recently conducted during
               1991-94, the NHANES gives comprehensive physical examinations and
               in-depth interviews to a nationally representative sample of the population
               (including almost 2,400 children aged 1 through 5 in the most recent
               survey). A blood lead test is included in the physical examination.
               Demographic, health insurance, income, and other information is also
               gathered in the interviews and incorporated into the CDC database.

               Survey results showed that children who had elevated blood lead levels
               were likely to be receiving health care benefits or services through federal
               programs. Children who were enrolled in or targeted by federal health
               care programs constituted about 40 percent of all 1- through 5-year-olds in
               the sample but more than 77 percent of the 1- through 5-year-olds who had
               elevated blood lead levels. Projecting the sample results to the population
               at large, we estimate that 688,000 of the estimated 890,000 children who
               have elevated blood lead levels nationwide are enrolled in Medicaid or WIC
               or are within the target population served by the Health Center Program.16

               The prevalence of elevated blood lead levels for the surveyed children
               enrolled in Medicaid or WIC or living in low-income and uninsured families
               targeted by the Health Center Program was about 8.4 percent—that is,
               8.4 percent of these children had elevated blood lead levels. This rate was
               nearly five times the 1.7-percent prevalence found among the children not
               enrolled in or targeted by these federal health care programs.

               14
                While WIC is generally considered a nutrition program, for our purposes we refer to it as one of the
               health care programs that we reviewed.
               15
                Centers for Disease Control and Prevention, “Updated: Blood Lead Levels—United States,
               1991-1994,” Morbidity and Mortality Weekly Report, Vol. 46, No. 7 (1997), pp. 141-46, and Morbidity and
               Mortality Weekly Report, Vol. 46, No. 26 (1997), p. 607.
               16
                The remaining children who had elevated blood lead levels were living in families whose incomes
               were more than 130 percent of the poverty level, had some form of health insurance besides Medicaid,
               and were not receiving WIC benefits.



               Page 23                                                           GAO/HEHS-99-18 Lead Poisoning
                       Chapter 2
                       Elevated Blood Lead Levels Remain a
                       Significant Problem for Children Served by
                       Federal Health Care Programs




                       The program-by-program results together with projections of how many
                       children in each program have elevated blood lead levels are presented
                       below. Because some children are eligible for more than one program, the
                       estimates total more than 688,000.


                       Our analysis of the NHANES data shows that about 1 in every 12, or
Results for Surveyed   8.5 percent, of the 1-through 5-year-olds who were enrolled in Medicaid
Children Enrolled in   had an elevated blood lead level. Of particular note, NHANES data indicated
Medicaid               that Medicaid children constitute the majority of children who have
                       elevated blood lead levels high enough to warrant clinical management,
                       including evaluations for complications of lead poisoning, environmental
                       investigations, and other services. The NHANES data show that at least
                       83 percent of children aged 1 through 5 who had higher levels of lead
                       toxicity (20 µg/dl or more) were enrolled in Medicaid. Projecting the
                       NHANES results for the surveyed children in Medicaid to the national level,
                       we estimate that 535,000 of the 890,000 children who have elevated blood
                       levels are in families that have Medicaid health care coverage.17


                       Children at nutritional risk—those targeted by the WIC program—are
Results for Surveyed   especially susceptible to lead poisoning.18 For example, iron deficiency
Children in WIC        has been shown to increase the toxicity of lead. Our analysis of NHANES
                       data for children in families receiving WIC benefits found that 1 in 9, or
                       12 percent, of these children had an elevated blood lead level. This rate
                       translates to an estimate that 452,000 of the 890,000 children who have
                       elevated blood lead levels are members of families receiving WIC benefits,
                       including 319,000 children who are also covered by Medicaid.




                       17
                        We previously reported this portion of our analysis in GAO/HEHS-98-78. In another analysis in which
                       we looked at prevalence and screening for Medicaid children aged 1 and 2, we found that nearly
                       10 percent of children in Medicaid aged 1 through 2 had elevated levels of lead in their blood. See
                       GAO/HEHS-98-169R.
                       18
                        See National Research Council, Measuring Lead Exposure in Infants, Children, and other Sensitive
                       Populations (Washington, D.C.: 1993).



                       Page 24                                                          GAO/HEHS-99-18 Lead Poisoning
                       Chapter 2
                       Elevated Blood Lead Levels Remain a
                       Significant Problem for Children Served by
                       Federal Health Care Programs




                       Although children receiving Medicaid benefits may receive their care at
Results for Surveyed   federally supported health centers, these centers target those with the
Children Within the    greatest risk of going without medical care—often children in families
Health Center Target   whose income is low and who also lack health insurance.19 Within this
                       group, our analysis of NHANES data shows that about 1 of every 16 children,
Population             or 6 percent, had an elevated blood lead level. Projecting this rate to the
                       entire population, an estimated 67,000 of the 890,000 children who have
                       elevated blood levels are in low-income and uninsured families and thus
                       within the target population for the Health Center Program.




                       19
                         We defined “low-income family” as one whose income was less than or equal to 130 percent of the
                       federally defined poverty level at the time of the NHANES survey. We used this level because CDC in
                       earlier NHANES analyses defined incomes lower than this level as low-income. (See Morbidity and
                       Mortality Weekly Report, Vol. 46, No. 7 (1997), p. 141.)



                       Page 25                                                          GAO/HEHS-99-18 Lead Poisoning
Chapter 3

Most Children Served by Federal Health
Care Programs Are Not Being Screened for
Elevated Blood Lead Levels
                       Despite federal policies to ensure that children in federal health care
                       programs are screened for elevated blood lead levels, most children are
                       not being screened. Our analysis of NHANES data shows that only
                       18 percent of all surveyed children enrolled in or targeted by federal health
                       care programs had been screened before participating in the survey. This
                       means that most of the children who are likely to have elevated blood lead
                       levels—more than 400,000—have not been identified as having this
                       condition. Our analysis of 15 states’ Medicaid billing data similarly
                       indicates that overall screening is low, and information from the health
                       centers we visited shows that screening varies greatly from state to state
                       and location to location.


                       CDC, HCFA, HRSA,  and USDA have issued guidelines and requirements
Federal Policies Are   regarding the extent to which children in federal health care programs
Designed to Ensure     should be screened for elevated blood lead levels. CDC’s general guidelines
That Children Are      have recently changed: Guidelines issued in October 1991 called for
                       virtually all children aged 1 through 5 to be screened, but CDC’s
Screened               November 1997 guidelines recommended that state health officials
                       develop statewide plans for childhood lead screening and better target
                       children who are at specific risk. Citing the declining trend in average
                       blood lead levels and generally low screening rates, CDC revised its
                       guidelines to both relax universal screening recommendations in low-risk
                       areas and increase the identification of children in high-risk communities
                       and populations. However, CDC maintains that, in general, children who
                       receive Medicaid or other federal health benefits should be screened
                       unless reliable, representative blood lead level data demonstrate the
                       absence of lead exposure.20

                       HCFA  and HRSA have required that Medicaid providers and health centers
                       receiving federal grants provide lead screening services. Federal Medicaid
                       policy for lead screening was established by the Omnibus Budget
                       Reconciliation Act of 1989, which required that Medicaid EPSDT services
                       include blood lead level laboratory tests appropriate for age and risk
                       factors. HCFA’s Medicaid manual has specifically required since 1992 that,
                       in line with CDC’s recommendations, children enrolled in Medicaid be
                       screened for elevated blood lead levels at a minimum at ages 12 and 24
                       months, and through 72 months if previously unscreened. HRSA policy was
                       established in 1992 when Public Law 102-531 amended the Public Health
                       Service Act to include lead screening among the primary services that

                       20
                        CDC, Screening Young Children for Lead Poisoning: Guidance for State and Local Public Health
                       Officials (Atlanta: Nov. 1997).



                       Page 26                                                        GAO/HEHS-99-18 Lead Poisoning
                       Chapter 3
                       Most Children Served by Federal Health
                       Care Programs Are Not Being Screened for
                       Elevated Blood Lead Levels




                       health centers provide. HRSA policy calls for health centers to establish
                       lead screening protocols that are consistent with CDC’s guidelines,
                       including risk assessments at well child visits and an initial blood lead test
                       at at least 12 months.21 Details of these federal lead screening policies
                       appear in appendix IV.

                       USDA does not require that WIC programs screen participating children.
                       Instead, WIC programs are encouraged to ask during nutrition screening
                       whether children have had a blood lead test and, if not, to refer them to a
                       lead screening provider.22 Such preventive health services might be
                       financed by other federal programs such as Medicaid, because many WIC
                       recipients are also eligible for Medicaid. However, research has shown
                       that WIC is the single largest point of access to health-related services for
                       low-income preschool children.23


                       Despite federal policies to ensure that children in federal health care
National Survey Data   programs receive screening services, our analysis of NHANES and Medicaid
Show That Only One     data indicates that only about 18 percent have been screened. The NHANES
in Five Children Has   database can be used to estimate lead screening for both the population as
                       a whole and various groups such as those eligible for federal health care
Been Screened          program benefits because it contains responses from participating parents,
                       guardians, and others as to whether the children have been screened for
                       lead. Screening rates for children aged 1 through 5 in or targeted by the
                       three federal health care programs ranged from 17 to 19 percent,
                       compared with 7 percent for children not in any of these programs (see
                       table 3.1).




                       21
                         Specifically, HRSA policy indicates that each well-child visit and other pediatric visits as appropriate
                       from age 6 months to 6 years should assess risk of exposure to lead. High-risk children should receive
                       an initial blood lead test at age 6 months or when they are determined to be at high risk. Low-risk
                       children should receive an initial blood lead test at age 12 months.
                       22
                         Elevated blood lead levels may make children eligible for WIC if other qualifying criteria are met. In
                       June 1998, when USDA set national eligibility standards for its WIC program, it included an elevated
                       blood lead level as a qualifying condition for nutritional risk. In earlier years, WIC had a more
                       significant role in lead screening, as discussed later in this report.
                       23
                         According to researchers, approximately 5 to 7 million infants and children younger than 5 years old
                       participated in WIC monthly during 1997. WIC participants generally visit clinics every 2 to 3 months to
                       receive nutrition services and food vouchers, and more comprehensive health status evaluations are
                       conducted every 6 to 12 months during certification visits. See Abigail Shefer and Jim Mize, “Primary
                       Care Providers and WIC: Improving Immunization Coverage Among High-Risk Children,” Pediatric
                       Annals, Vol. 27, No. 7 (1998), pp. 428-33.



                       Page 27                                                              GAO/HEHS-99-18 Lead Poisoning
                                      Chapter 3
                                      Most Children Served by Federal Health
                                      Care Programs Are Not Being Screened for
                                      Elevated Blood Lead Levels




Table 3.1: Estimated Lead Screening
Rates for Children Aged 1 Through 5                                                                                                     Percent
                                                                                                                                       screened
                                      All children aged 1-5                                                                                    11
                                      Children enrolled in Medicaida                                                                           19
                                                                                  b
                                      Low-income and uninsured children                                                                        17
                                      Children enrolled in WICc                                                                                18
                                      Children not covered by Medicaid or WIC and not low-income and
                                      uninsured                                                                                                 7
                                      a
                                       Our previous analysis of lead screening for Medicaid children aged 1 through 2 showed a
                                      screening rate of 21 percent. See Children’s Health: Elevated Blood Lead Levels in Medicaid and
                                      Hispanic Children (GAO/HEHS-98-169R, May 18, 1998).
                                      b
                                          This population of children is within the target population for the Health Center Program.
                                      c
                                       Children participating in WIC may also be participating in the Medicaid program or may have low
                                      incomes and no health insurance. These figures are for ages 1 through 4, since WIC is for
                                      children through age 4 only.



                                      Since the NHANES analysis on lead screening is based on parents’ and
                                      guardians’ reports of whether participating children have been screened, it
                                      is subject to the accuracy of their awareness and recall. However, it is
                                      supported by other data reflecting screening rates for certain children
                                      enrolled in Medicaid. We analyzed data from HCFA’s State Medicaid
                                      Research File to assess the extent to which individual state Medicaid
                                      programs had been billed for lead tests for children receiving Medicaid
                                      coverage for a year or more.24 This analysis of 1994 and 1995 data from 15
                                      state Medicaid fee-for-service programs showed a screening rate similar to
                                      that of the NHANES data. On average, state Medicaid programs provided
                                      lead tests for 21 percent of 1- and 2-year-old children covered for a full
                                      year by Medicaid. While these billing data provide information only for
                                      children covered by Medicaid fee-for-service (rather than managed care)
                                      arrangements, data reported to us by state Medicaid agencies were the
                                      basis for our estimate that as of June 1997, about 60 percent of




                                      24
                                        HCFA’s State Medicaid Resource File contains Medicaid fee-for-service information on eligibility,
                                      billing claims, and utilization for states that participate in the Medicaid Statistical Information System.
                                      Billing data are limited to the extent that they do not provide information on provided services for
                                      which no reimbursement was sought. For this reason, we excluded from our analysis (1) children
                                      receiving Medicaid for less than 1 year, (2) children with any indication of having other insurance
                                      coverage, and (3) any data for states that indicated to us that their public health laboratory performed
                                      blood lead tests at no fee to the Medicaid program. Further details on our use of state Medicaid data
                                      appear in appendix II.



                                      Page 28                                                              GAO/HEHS-99-18 Lead Poisoning
                         Chapter 3
                         Most Children Served by Federal Health
                         Care Programs Are Not Being Screened for
                         Elevated Blood Lead Levels




                         Medicaid-enrolled children had fee-for-service arrangements.25 National
                         data on lead screening within Medicaid managed care programs were not
                         available.


                         Given these screening levels, many children who have elevated blood lead
Insufficient Screening   levels are not likely to have been so identified and therefore have not been
Means Many Children      treated. The lead screening histories in the NHANES allow us to estimate the
Remain Undiagnosed       number of these undiagnosed cases. That is, the survey data show whether
                         children had been screened for lead before participating in the survey and
                         whether they had elevated blood lead levels (as identified through NHANES
                         blood lead tests). In particular, about two-thirds of participating children
                         who had elevated blood lead levels and were enrolled in or targeted by
                         federal health care programs had not received a blood lead test before the
                         survey. Thus, we estimate that about 436,000 of the 688,000 children who
                         have elevated blood lead levels and are enrolled in or targeted by federal
                         health care programs have not been diagnosed as having this condition.
                         Our estimates, based on the results for children aged 1 through 5, are
                         shown in figure 3.1.




                         25
                          HCFA does not maintain complete screening data on children enrolled in Medicaid who are under
                         age 6 and have managed care arrangements. Since the number of people with managed care
                         arrangements has been increasing, the proportion of Medicaid children with fee-for-service
                         arrangements in the earlier years of our analysis (1994 and 1995) is likely to have been higher.



                         Page 29                                                         GAO/HEHS-99-18 Lead Poisoning
                                      Chapter 3
                                      Most Children Served by Federal Health
                                      Care Programs Are Not Being Screened for
                                      Elevated Blood Lead Levels




Figure 3.1: Estimated Number of
Children Aged 1 Through 5 Years Who                                                            Not Covered by These Categories
Have Undetected Elevated Blood Lead
Levels by Federal Health Care                                                                  Enrolled in WIC Only
Assistance Category
                                                                                               1%
                                                                                               Eligible for Health Center Services
                                                                                               and Enrolled in WIC




                                                    • 13%

                                                                           40% •               Enrolled in Medicaid and WIC
                                           • 22%


                                                    •


                                                           22%
                                                             •


                                                                                               Enrolled in Medicaid and Not
                                                                                               Enrolled in WIC

                                                                                               2%
                                                                                               Eligible for Health Center Services
                                                                                               and Not Enrolled in WIC


                                                Eligible for Federal Health Care Assistance




                                      Information from the Medicaid billing database we analyzed for 15 states
Screening Rates Vary                  and our review of seven health centers indicate that the extent to which
by Location                           children are screened for elevated blood lead levels varies widely from
                                      location to location. State Medicaid agency screening rates in
                                      fee-for-service arrangements ranged from less than 1 percent of children
                                      aged 1 through 2 in Washington to about 46 percent in Alabama.26 Figure
                                      3.2 provides the results of this analysis by state.



                                      26
                                        We contacted Washington and Alabama health departments to determine whether these rates were
                                      consistent with data on lead screening they collected. Both confirmed that these screening rates were
                                      consistent with those reported in their states. For example, in 1996, less than 1 percent of all children
                                      in Washington had been screened for lead poisoning.



                                      Page 30                                                             GAO/HEHS-99-18 Lead Poisoning
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                                           Most Children Served by Federal Health
                                           Care Programs Are Not Being Screened for
                                           Elevated Blood Lead Levels




Figure 3.2: State Medicaid Billing Rates for Blood Lead Laboratory Tests for Children Aged 1 and 2 in 1994 and 1995




                                           Most of the seven health centers we reviewed were screening at rates
                                           much higher than the overall rates we found in the NHANES and Medicaid
                                           data. However, as with state Medicaid programs, screening varied widely



                                           Page 31                                               GAO/HEHS-99-18 Lead Poisoning
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                                      Care Programs Are Not Being Screened for
                                      Elevated Blood Lead Levels




                                      between the seven centers. Within 7 of 10 HHS regions, we selected centers
                                      that could be considered to be in high-risk areas on the basis of (1) the
                                      number of pre-1950 homes and (2) the number of children aged 4 and
                                      younger in Medicaid and served by the health centers in 1996.27 We
                                      assessed the screening of 1- and 2-year-olds because Medicaid and HRSA
                                      require at least one screening for these children. Three centers—Brooklyn,
                                      New York, New Bedford, Massachusetts, and Philadelphia—screened
                                      nearly all the children whose files we reviewed. In contrast, the center in
                                      Everett, Washington, apparently screened none.28 Table 3.2 contains
                                      screening rates we identified for each center, and appendix V contains a
                                      further discussion of our methodology and findings.

Table 3.2: Lead Screening of 1- and
2-Year-Olds in 1996 at Seven Health                                                                                               Percent of
Centers                                                                                                                             children
                                                                                                                                        ever
                                      Health center site                                                                          screeneda
                                      Atlanta, Ga.                                                                                             64
                                      Everett, Wash.                                                                                            0
                                      New Bedford, Mass.                                                                                   100
                                      Brooklyn, N.Y.                                                                                           93
                                      Philadelphia, Pa.                                                                                    100
                                      San Antonio, Tex.                                                                                        50
                                      Watsonville, Calif.                                                                                      80
                                      a
                                       Based on a random sample of files for children born between January 1, 1994, and June 30,
                                      1995, and seen at the health center during 1996.



                                      State and local decisions seem to be the major factor in determining the
                                      extent to which children in federal health care programs are screened, as
                                      discussed in the next chapter.




                                      27
                                       We used this age group because HRSA requires health centers to report for it. See app. V for a more
                                      detailed discussion of our methodology and findings at health centers.
                                      28
                                        Officials in Everett told us that they had performed only three lead tests in 1997 and could not
                                      identify screenings for 1996, the year we reviewed. Officials at the Washington State Department of
                                      Health, where the state’s registry of lead tests is maintained, confirmed that this center reported
                                      conducting only three tests in 1993-98. As a result, we did not specifically review medical records to
                                      determine the center’s screening rate.


                                      Page 32                                                             GAO/HEHS-99-18 Lead Poisoning
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Oversight and Other Problems

                         Lead screening rates in federal health care programs are low for several
                         reasons. One is that federal and state agencies often do not monitor or
                         otherwise ensure the implementation of federal screening policies. This is
                         reflected in the many locations where we found screening policies less
                         stringent than federal policies. A second and related reason is that the
                         perception of the problem’s seriousness varies greatly from place to place,
                         directly affecting the screening policies that are adopted. Third, screening
                         efforts are hampered by difficulties in providing preventive health care
                         services to children in these programs. For example, health officials said
                         that a significant problem is that some families do not seek preventive care
                         services such as lead screening, instead visiting health care providers only
                         when children are sick.

                         Screening rates can be increased in several potential ways. One is to
                         ensure that perceptions about the extent of the problem are backed up
                         with reliable data. Most state Medicaid programs and health departments
                         we contacted lacked data to determine the extent to which elevated blood
                         lead levels are a problem in their communities. A second way is to
                         improve the coordination between lead screening and other preventive
                         care activities. For example, HHS’ experience with improving immunization
                         rates among children who qualify for federal programs might provide
                         models and avenues for use in lead screening. The shift to managed care
                         within state Medicaid programs might also create additional opportunities
                         for improving lead screening, although recent research is showing that
                         many state Medicaid agencies have yet to include lead screening
                         responsibilities in their contracts with managed care organizations.


                         We found that relatively little activity monitors or otherwise ensures the
Federal Oversight Has    implementation of federal screening requirements, either for Medicaid or
Not Ensured That         for the Health Center Program. HCFA does not review state Medicaid
Screening Policies Are   programs for compliance with EPSDT lead screening policies, and nearly
                         half the state Medicaid programs have adopted screening policies that are
Fully Implemented        less rigorous than the federal policies. Further, many state Medicaid
                         programs conduct little or no monitoring to determine whether children
                         are being screened. While HRSA reviews health centers, it has not identified
                         the problems we found with health centers not following federal screening
                         policies. However, screening rates are highest where the states have their
                         own statutes or regulations with specific screening requirements and other
                         ways of ensuring compliance.




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Lack of HCFA Oversight     HCFA does not monitor state Medicaid agencies’ implementation of lead
Means State Medicaid       screening policies. A HCFA official told us that the agency assumes that the
Screening Policies Are     states are providing EPSDT services as specified in HCFA policy and does not
                           specifically review them for comparability with federal policies. HCFA does
Often Less Rigorous Than   set and monitor performance standards regarding certain EPSDT services
HCFA’s                     such as preventive vision, dental, and hearing screening. These standards
                           do not include lead screening.

                           Many state Medicaid programs do not match HCFA’s policy that lead
                           screening services be provided to children at 12 and 24 months of age, and
                           through 72 months if previously unscreened.29 Specifically, we found that
                           24 of the 51 states have policies that are less rigorous than HCFA’s.30 For
                           example, 2 states require screening only once, at either 12 or 24 months,
                           and 7 do not require minimum screening tests.

                           Many state policies do not follow HCFA’s policy of screening children aged
                           36 months through 72 months if previously unscreened, which could leave
                           many children with undetected and untreated elevated blood levels.
                           Specifically, 21 states do not require screening for children aged 3 through
                           5 who have not been previously screened. An analysis of NHANES data
                           shows that about 41 percent of all children in Medicaid who have
                           undetected elevated blood lead levels are in this age group. Projected to
                           the entire population, this represents 146,000 children who have elevated
                           blood lead levels, are in Medicaid, are aged 3 through 5, and have not been
                           screened. To the extent that they reside in the 21 states that have no
                           screening requirement, these 3- through 5-year-olds are likely to have their
                           conditions go undetected.

                           HCFA  has recently amended its policy and in so doing has clarified an
                           ambiguity that may have contributed to the variety of screening policies
                           we found. Until recently, HCFA’s Medicaid manual contained potentially
                           conflicting guidance regarding blood screening tests. It stated that blood
                           lead screening was required for all children at least at 12 and 24 months of
                           age, but it also stated that physicians should use their medical judgment in
                           determining the applicability of the laboratory tests. The manual indicated
                           that laboratory tests (including that for lead toxicity) should be conducted
                           “as appropriate.” In September 1998, HCFA changed the manual to read,


                           29
                             HCFA’s 1993 state Medicaid manual indicated that a child between the ages of 24 months and 72
                           months who had not been screened for blood lead must be screened immediately. HCFA’s 1998
                           Medicaid manual change indicated that children between the ages of 36 months and 72 months must
                           receive a screening blood lead test if they have not been previously screened for lead poisoning.
                           30
                             The District of Columbia is counted as a state.



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                                     “With the exception of lead toxicity screening, physicians providing
                                     screening services under the EPSDT program use their medical judgment in
                                     determining the applicability of the laboratory tests or analyses to be
                                     performed. Lead toxicity screening must be provided.”31


State Medicaid Oversight Is          Many state Medicaid agencies are not monitoring Medicaid providers’ lead
Often Lacking                        screening activities. We surveyed all 51 state Medicaid agencies to see
                                     whether and how they, the health department, or others monitor
                                     fee-for-service and managed care providers to ensure that children in
                                     Medicaid were screened.32 Thirty states indicated that they monitor either
                                     fee-for-service providers or managed care providers to some degree.
                                     Twenty-two of 47 states with children in fee-for-service care provide some
                                     degree of monitoring; 26 of 41 states with children in managed care do so
                                     (see table 4.1). Most do so by auditing a sample of medical records.

Table 4.1: State Lead Screening
Monitoring of Children in Medicaid                              States that
                                                               monitor lead                        Type of monitoringa
                                                              screening for                                   Audits of
                                                                children in            Reporting               medical            Review of
                                                                  Medicaid          requirements               records           billing data
                                     Fee-for-service
                                     providersb                             22                     4                   16                     6
                                     Managed care
                                     providersc                             26                   10                    22                     7
                                     a
                                      Numbers do not add because some states have more than one monitoring activity.
                                     b
                                      Forty-seven state Medicaid programs reported having some children in fee-for-service
                                     arrangements in 1997.
                                     c
                                      Forty-one state Medicaid programs reported having some children in managed care
                                     arrangements in 1997.




HRSA Reviews Have Not                Health centers are expected to follow not only HCFA’s screening policy as
Identified Health Centers’           set out in the Medicaid manual but also HRSA’s screening policy. HCFA
Lack of Adherence to                 requires screening for children 12 and 24 months old, while HRSA requires
                                     screening only at 12 months. HCFA’s requirements cover only children in
Federal Policies                     Medicaid, while HRSA’s cover all children seen at the health centers,


                                     31
                                      HCFA, State Medicaid Manual, Part 5—Early and Periodic Screening, Diagnosis, and Treatment
                                     (EPSDT), Transmittal No. 12, Washington, D.C., Sept. 1998.
                                     32
                                       In the survey, we specifically asked for activities that monitor capitated or prepaid providers. For
                                     clarity, we refer to these providers as “managed care” providers.



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                             although these often include children in Medicaid.33 Officials at one of the
                             seven health centers we visited advised us that the center had screened
                             virtually no children for lead poisoning and, thus, the center was not
                             following either HCFA’s or HRSA’s policy of screening children at least once.
                             At two other health centers, only one of the two policies was being
                             followed:

                         •   The Watsonville health center medical director told us that the center was
                             relying on screening children at 12 months. While this paralleled HRSA
                             policy, it was not consistent with the Medicaid policy requiring that
                             screening services be provided to children at both 12 and 24 months.
                         •   Officials at the San Antonio health center stated that they had a screening
                             policy for children in Medicaid that was consistent with HCFA’s. It had no
                             policy for screening uninsured or other children visiting the center, as is
                             required by HRSA.

                             Although HRSA monitors health centers’ lead screening policies, it has not
                             identified the discrepancies we found. HRSA conducts periodic reviews at
                             health centers, and these reviews are supposed to assess whether the
                             health center evaluates all children for lead poisoning risk, participates in
                             lead poisoning prevention programs, and provides screening and testing
                             services. Reviewers are instructed to look at medical records for the use of
                             preventive health schedules and strategies for lead screening but are not
                             required to assess actual lead screening practices or rates. None of the
                             reviews for the centers we visited had reported the concerns with the lead
                             screening policies and practices we identified in our review.


Screening Rates Are          Among the states we reviewed, the rate at which children were reportedly
Highest in States With       screened for blood lead levels was highest in states that had their own
Screening Requirements       screening requirements. Such laws are relatively infrequent: According to
                             CDC, among 20 states that CDC had surveyed, only 3 (Illinois, New York, and
                             Rhode Island) have laws or administrative rules requiring screening.
                             Among the seven states and localities we contacted, New York and
                             Massachusetts had regulations that providers screen for blood lead levels.
                             New York law requires that all children be screened at least at or around
                             ages 1 and 2, and Massachusetts requires that at a minimum all children be
                             screened annually through the age of 48 months. Both states also require


                             33
                               In addition, health centers may provide health care for children enrolled in Head Start. Reviewing
                             individual states’ Head Start policies for requiring lead screening was outside our scope, but we did
                             determine that federal Head Start policy differs from that of HCFA and HRSA in that it allows Head
                             Start programs to set lead screening policies locally.



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                        proof of lead screening as a condition for entering day care or
                        kindergarten.34

                        The requirements and built-in enforcement mechanisms in the two states’
                        laws appeared to make a difference in screening: Among the states and
                        localities we visited, New York City and Massachusetts screened the
                        highest proportion of children. The New York City Health Department
                        reported that in 1996, 44 percent of 1- and 2-year-olds had been screened,
                        and Massachusetts reported a 54-percent screening rate for children aged
                        1 through 5 for that year, compared with generally lower screening rates
                        estimated by other programs we visited in states without screening laws.35

                        These observations are consistent with those of a CDC-contracted research
                        study evaluating activities of CDC’s Lead Poisoning Prevention Branch. One
                        conclusion of the study was that the legal infrastructure is important but
                        underdeveloped. Statutes and ordinances in screening, reporting, and
                        treatment activities were not in place, or not enforced, in many surveyed
                        sites.36


                        The variation in screening rates that we found reflects the fact that lead
Perceptions of the      poisoning is perceived as a significant problem in some places but not in
Problem’s Seriousness   others. Several health center officials indicated that a major barrier to
Vary Greatly and        screening is physicians’ perceptions that lead exposure is not a problem in
                        their communities. Supporting these views, a 1996 Academy of Pediatrics
Affect Decisions to     survey of 734 primary care pediatricians found that the most commonly
Screen                  reported reason the surveyed pediatricians did not screen was a reported
                        low prevalence of elevated blood lead levels among their patients.
                        Furthermore, only 38 percent of primary care pediatricians believed that
                        the benefits of screening exceeded the costs.37 The survey also found that
                        not all providers agree with CDC’s definition of the level of concern for lead

                        34
                          Specifically, Massachusetts requires that for entry to kindergarten children present evidence of
                        having been screened for lead poisoning. New York requires child care providers, public and private
                        nursery schools, and preschools that are licensed, certified, or approved by any state or local agency to
                        obtain a copy of a certificate of lead screening for every child who is at least 1 year old but younger
                        than 6.
                        35
                          While most of the programs we reviewed that were in places without screening laws (Georgia, Texas,
                        and Washington and Philadelphia) did not know actual screening rates in the city or state, most had
                        estimated screening for selected time periods and populations of children. See appendix VII for a
                        further discussion of these estimates.
                        36
                         Macro International, Inc., Executive Summary: Evaluation of Activities of the Lead Poisoning
                        Prevention Branch, Contract 200-88-0641-18, Mar. 30, 1994.
                        37
                           James Campbell and others, “Blood Lead Screening Practices Among US Pediatricians,” Pediatrics,
                        Sept. 1996, pp. 372-77.



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toxicity. Seventy-three percent of pediatricians surveyed agreed that blood
lead levels at or higher than 10 µg/dl should be considered elevated, but
16 percent disagreed.38 Eighty-nine percent of primary care pediatricians
believed that epidemiologic studies should be performed to determine
which communities have high proportions of children who have elevated
blood lead levels. The survey found that many pediatricians may want
additional guidance about when to consider selective screening.

Similarly, a 1996 study produced for the Childhood Lead Poisoning
Prevention Branch of the California Department of Health Services
assessed providers’ blood lead screening practices and attitudes and found
that “Many physicians who care for children are not convinced that lead
poisoning is a significant health issue for their patients.”39 The report
concluded that physicians would be more likely to screen if they thought
that the cost-benefit ratio of screening were more attractive. Frequently
identified barriers to screening included a lack of solid local prevalence
data, the absence of a quality screening questionnaire to identify risk,
parent and physician resistance to venous blood draws, the absence of an
effective medical treatment for identified cases lower than 45 µg/dl, and
the lack of access to screening for some children who are at greatest risk
for lead poisoning.40

The opinions of a state’s medical establishment can have a profound effect
upon the state’s efforts to screen its at-risk population. For example, the
Massachusetts health department reported that 3.7 percent of the children
who had been screened had elevated blood lead levels, and the state has a
policy of screening all children annually until the age of 48 months. In
contrast, even though the Washington lead registry shows that 3 percent of
children screened for lead in that state have elevated blood lead levels,
providers there apparently regard 3 percent as evidence that elevated
blood lead levels are not a major concern. In discussions with health
department, Medicaid, and provider community officials, and in reviewing

38
  Another survey of 155 pediatricians found that only two-thirds knew the lowest blood lead level
associated with deficits in cognition. See Susan Ferguson and Tracy Lieu, “Blood Lead Testing by
Pediatricians: Practice, Attitudes, and Demographics,” American Journal of Public Health, Vol. 87, No.
8 (Aug. 1997), pp. 1349-51.
39
 Duerr Evaluation Resources, Final Report: Results of a Statewide Study of Physician Attitudes,
Knowledge and Practices Related to Childhood Lead Poisoning (Chico, Calif.: Department of Health
Services, Childhood Lead Poisoning Prevention Branch, Nov. 1996).
40
  CDC supports the use of venipuncture (or venous) blood draws or a process called “fingerstick” as
the sample-collection method, depending on the accuracy of the test results, the availability of trained
personnel, convenience, and cost. In fingerstick sampling, a small amount of blood is collected from a
puncture in a child’s finger. According to CDC, if children’s fingers are cleaned carefully, capillary (or
fingerstick) sampling can perform well as a screening tool.



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provider commentaries on lead screening in Washington, we learned that
providers in the state often did not support testing for blood lead levels
because lead poisoning is not viewed as a significant problem. However, a
survey in high-risk areas in Washington found prevalences of blood lead
levels greater than 10 µg/dl as high as 8.4 percent.

The influence of such views can be so strong that even children who seem
to be at obvious risk of lead exposure might not be screened. We visited
the health center in Everett, Washington, because of its location in a zip
code with high numbers of pre-1950 houses and because it served
relatively high numbers of children in Medicaid. However, we also learned
that it was a few blocks from a state-designated Superfund site, a lead,
gold, silver, and arsenic smelter at the turn of the century. Many soil
samples taken in residential neighborhoods within the boundaries of the
site had levels of lead contamination greater than the state-mandated
cleanup level, and one sample exceeded the state level by nearly 40 times.
Despite the fact that the health center served children living within the
boundaries of this site, the medical director advised us that virtually none
of the children were screened for elevated blood lead levels.41 According
to health center officials, the local health department had for years
discouraged providers at the health center from screening for elevated
blood lead levels because of the perception that there was not a problem
in the area. However, we were advised that in response to our review, the
health department provided the health center with guidance on screening
children visiting or playing near the smelter site for elevated blood lead
levels, as well as children living in older housing and with other risk
factors.

To some extent, the legal infrastructure for lead screening and related
activities is influenced by the perceptions of physicians and others about
the extent to which lead exposure is a local problem. Although faced with
the loss of federal grant money, some states have not passed laws or
otherwise demonstrated that they have the legal authority and ability to
support housing-related lead poisoning prevention activities (addressing
training, certification, and accreditation programs for lead-based paint


41
  The Agency for Toxic Substances and Disease Registry (ATSDR) lists lead second in its ranking of
dangerous contaminants. A 1992 ATSDR analysis paper reviewed several quantitative studies on the
effect of lead-contaminated soil on children’s blood lead levels and found a strong positive correlation
between exposure to lead-contaminated soil and lead levels. ATSDR recommended that, at all sites,
health assessors evaluate the need for follow-up activities. See Charles Xintaras, “Analysis Paper:
Impact of Lead-Contaminated Soil on Public Health,” HHS, Public Health Service, ATSDR, Atlanta,
Georgia, May 1992, http://atsdrl.atsdr.cdc.gov:8080/cxlead.html#head011000000000000 (retrieved
2/10/98 12:17:40).



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professionals such as lead inspectors and abatement contractors).42 While
housing-related lead poisoning prevention programs were outside the
scope of our review, since they do not directly address lead screening and
medical treatment activities, states’ legislative experiences provide
insights about variations in the states’ efforts and legal infrastructure. A
1998 report found that many states were unable to pass legislation in part
because of (1) mixed messages from federal and state agencies and the
medical community about the seriousness of the public health risk from
lead and (2) a lack of compelling data at the state level to support
legislation.43

Perceptions of the problem affect not only physicians’ decisions to screen
but also officials’ views on monitoring the implementation of federal lead
screening policies. For example, HRSA officials in several regions
responsible for health center performance reviews (including lead
screening and treatment) indicated to us that they did not believe lead
poisoning was a concern in their regions. According to a HCFA official, a
1994 survey of 967 Medicaid-eligible children in Alaska has often been
cited as evidence that federal screening policies are unreasonable and
should not be enforced.44 This survey, finding that less than 1 percent of
Medicaid-eligible children had elevated blood lead levels, was the basis for
a 1997 Council of State and Territorial Epidemiologists’ position statement
that screening should be state-specific and that HCFA should allow state
(targeted screening) plans to include children enrolled in Medicaid.45




42
 Under section 404 of the Toxic Substances Control Act as added by the Housing and Community
Development Act of 1992, states had until August 31, 1998, to implement a federally authorized
program to administer lead poisoning prevention activities addressing training, certification, and
accreditation programs for lead-based paint professions. One condition of federal authorization was to
demonstrate that the state had the legal authority and ability to implement the program. Without an
authorized program by August 31, 1998, states were subject to an EPA-administered and -enforced
program and concomitant loss of federal grant money for the preempted state programs.
43
   Analysis of Lead (Pb) Hazard Reduction Legislation: Implications for Washington State (Olympia,
Wash.: Washington State Department of Health, Apr. 1998). Other barriers cited included that the
legislative climate was not conducive to passing any new legislation that might cost constituents
money and concern about regulatory reform and the lack of funding or unfunded mandates.
44
 Laura Robin, Michael Beller, and John Middaugh, Childhood Lead Screening in Alaska: Results of a
Survey of Blood Lead Levels Among Medicaid-Eligible Children (Anchorage: Alaska Dept. of Health
and Social Services, Oct. 10, 1994).
45
 Council of State and Territorial Epidemiologists, 1997 CSTE Annual Meeting Position Statement EH-1
(Revision of Blood Lead Screening) (Montgomery, Ala: 1997), http://www.cste.org/page61.html (cited
Oct. 29, 1997).


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                       Even states that have mandatory lead screening laws are not screening all
Difficulties in        children. To some extent, low rates of screening reflect another important
Providing Preventive   factor: Many children are not receiving preventive health care in general
Care Services Keeps    through well-child visits. Health center and health department officials
                       said that a significant barrier to higher screening rates is that many
Screening Rates Low    children do not receive preventive health care of any kind. Health center
                       officials told us that it is difficult to convince parents of the importance of
                       preventive care when their children are not sick and, as a result, many
                       children visit their providers only when they are sick. To illustrate, health
                       center officials at the center we visited in Texas told us that for every
                       well-child visit, they provide more than 80 acute care visits.

                       Our studies and those conducted by others lend further support to the
                       views we heard expressed. In a study examining the effects of health care
                       insurance on access to care, we found that although having health
                       insurance and a regular source of health care facilitates a family’s use of
                       health services, low family income and education levels, lack of
                       transportation, and language differences are barriers to obtaining and
                       appropriately using them.46 A 1997 HCFA-supported study on the use of
                       EPSDT and other preventive and curative services by children enrolled in
                       Medicaid also found particular challenges in providing preventive health
                       services.47 Using 1992 Medicaid billing data from four states, the study
                       found that only 54 percent of the children recommended for well-child
                       visits (and, thus, preventive care) actually made such visits.

                       A related problem, health center officials said, is that in many cases at-risk
                       children are not screened because parents do not ensure that their
                       children receive the blood lead tests ordered by their physicians. Health
                       officials and a California assessment of the issue indicated that because
                       many clinics and physicians’ offices prefer venous blood draws to obtain
                       the blood sample and do not have a readily available pediatric
                       phlebotomist (or blood-drawer) to conduct blood tests, children must be
                       referred elsewhere for testing. Many of these children never arrive at the
                       sometimes distant facilities they are referred to and consequently are not
                       tested. The California Lead Poisoning Prevention Program identified the
                       reasons the children do not receive tests as ordered as such things as
                       parents’ lack of transportation or child care for children who would


                       46
                          Health Insurance: Coverage Leads to Increased Health Care Access for Children (GAO/HEHS-98-14,
                       Nov. 1997).
                       47
                        Norma Gavin and others, Comparative Study of the Use of EPSDT and Other Preventive and Curative
                       Health Care Services by Children Enrolled in Medicaid: Final Project Synthesis Report (Research
                       Triangle Park, N.C.: Research Triangle Institute, Apr. 1998.)



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                       remain at home, difficulty in getting time off from work, and a lack of
                       understanding of the test’s importance.48

                       A new medical device may make lead tests easier to administer and
                       perhaps reduce this problem. Our review of medical records at the health
                       centers showed that typically physicians send blood samples to
                       laboratories for analysis and may not receive the results for several days.
                       If the results show that a child has an elevated blood lead level, another
                       appointment must be scheduled to perform a confirmatory test or other
                       follow-up, which may not be kept. In September 1997, the Food and Drug
                       Administration approved the first hand-held screening device for testing
                       blood lead levels. While providers must still obtain a blood sample through
                       a fingerstick procedure, the device shows the lead level results
                       immediately without the use of a laboratory. Although the hand-held
                       device makes tests more convenient for providers, it complicates the
                       gathering of data by state and local health departments. For the most part,
                       states rely upon data from laboratories to assess their screening and
                       prevalence rates. If blood tests are not sent to laboratories but instead are
                       interpreted on the spot, states will need to identify an alternative means,
                       such as representative surveys, for obtaining this information.


                       Two types of actions could help resolve the problems that health officials
Better Data on the     and others have identified. First, because most state Medicaid programs
Prevalence of          and health departments we contacted lack good data to assess the risk of
Elevated Blood Lead    lead poisoning in local communities, improved data collection might help
                       them develop a better understanding of the degree to which portions of
Levels and Better      their communities’ populations are significantly at risk. This is particularly
Program Coordination   important because the prevalence of elevated blood lead levels can vary
                       even within a region or community. Second, further coordination between
Could Help Improve     lead poisoning programs and programs addressing other preventive health
Screening              care services could help identify models and avenues for identifying and
                       targeting the at-risk population for lead screening. While the growth of
                       managed care represents another opportunity to improve lead screening,
                       recent research indicates that many states have yet to address lead
                       screening responsibilities in managed care contracts.




                       48
                        To help address this barrier, the Childhood Lead Poisoning Branch of the California Dept. of Health
                       Services has developed a program to increase onsite blood lead testing by health care providers. See
                       Guidance Manual for Implementing Fingerstick Sampling (Emeryville, Calif.: Childhood Lead
                       Poisoning Prevention Branch, California Department of Health Services, Sept. 1997).



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Most Medicaid Programs      Most state Medicaid programs and health departments we contacted lack
and Many State Health       representative, reliable data from which to assess true prevalence and,
Departments Lack the Data   thus, risk. According to CDC, the best data available for developing state
                            and local screening policies is actual population-based data about the
Needed to Assess Risk and   prevalence of elevated blood lead levels—data that show the extent of
Develop Targeted            elevated blood lead levels in children who represent the entire population.
Screening                   CDC guidelines state that “These data should be used to explain and
Recommendations             support the recommendations to those who must carry them out,
                            especially child health-care providers, medical groups, managed-care
                            organizations, insurers, and parents.”

                            Responses to our survey show that most Medicaid programs lack
                            prevalence information needed to best target screening and to document
                            the absence of lead exposure within their population of
                            children—specifically, data on the extent of screening and prevalence of
                            elevated blood lead levels. In our survey of state Medicaid programs, we
                            asked directors whether their states had all the information they needed to
                            determine the extent of screening and the prevalence of elevated blood
                            lead levels in the Medicaid population—including the number of children
                            in Medicaid, the number of children in Medicaid who are screened for
                            elevated blood lead levels, and the number of those who have been
                            identified as having elevated blood lead levels. Directors in only 12 states
                            responded that they could readily produce such data. Twenty-nine
                            indicated that getting such data would be difficult.

                            Each of the seven CDC-supported lead poisoning prevention and
                            surveillance programs we contacted indicated that their states have laws
                            requiring laboratories or others to report certain results of blood lead
                            tests. However, most of these laws are not comprehensive enough to
                            ensure that a state can identify the extent of childhood blood lead
                            screening and the true prevalence of elevated blood lead levels in children
                            by local area. To do so, reporting all blood lead levels, including those not
                            considered to be elevated, would be necessary, and a representative
                            sample of children would have to be screened. Of the seven programs we
                            reviewed, three were in states that had such universal reporting laws:
                            Massachusetts, New York, and Washington. Only Massachusetts and New
                            York had screened enough children to ensure that their prevalence data
                            represented the population of children in the state. California, Georgia,
                            Pennsylvania, and Texas required reporting of lead levels only if they were
                            above a defined threshold; for example, California required laboratory




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                           reporting only for levels of 25 µg/dl or higher.49 CDC found, in assessing the
                           reporting requirements of selected states and localities receiving CDC lead
                           poisoning prevention and surveillance grants, that 10 of 20 grantees had
                           laws or administrative rules requiring the reporting of all blood lead levels.
                           A further discussion of CDC lead poisoning prevention programs appears in
                           appendix IV.

                           Such data are important to have in targeting screening, since the
                           prevalence of elevated blood lead levels varies widely even among
                           communities within the same state or geographic area. For example, the
                           Lead Poisoning Prevention Branch of the California Department of Health
                           Services has compiled data from several studies reviewing the prevalence
                           of elevated blood lead levels in various communities in the state and found
                           prevalence rates ranging from less than 5 percent to more than 20 percent.
                           The branch concluded that this variability reflects the complex structure
                           of exposure sources and populations at risk in the state. A 1996 survey
                           conducted by the Colorado Department of Public Health and Environment
                           similarly shows the importance of local-level prevalence data for
                           determining where to target screening. This survey assessed the
                           prevalence of childhood elevated blood lead levels in north central Denver
                           and found a prevalence rate much higher than expected. Specifically,
                           16.2 percent of the 173 participating children had elevated blood levels,
                           more than five times the overall rate of 3.2 percent calculated from 1994
                           surveillance reports for Denver County, which encompasses Denver. The
                           final report concluded that the findings were consistent with the idea that
                           there exist “pockets” of childhood lead poisoning within the city.50


Interventions to Improve   HHS’ interventions to overcome some barriers to providing preventive
Immunization Coverage      health services might serve as models and offer avenues for improving
Show Promise for           lead screening. Recent research has shown that the underimmunized
                           population and the population most at risk for elevated blood lead levels
Improving Lead Screening   are often the same. Specifically, a March 1998 study found that
                           underimmunized children in inner cities are also at greater risk for anemia
                           and elevated lead levels.51 Another study found that children who were not


                           49
                             Texas health department officials told us that although laboratories found it easier to report all lead
                           levels rather than just those above 10 µg/dl, the legislature thought that requiring all results would be a
                           burden.
                           50
                              See Richard Hoffman and others, Denver Childhood Blood Lead Survey Final Report (Denver, Colo.:
                           Colorado Dept. of Public Health and Environment, Jan. 1996).
                           51
                            William Adams and others, “Anemia and Elevated Lead Levels in Underimmunized Inner-city
                           Children,” Pediatrics, Vol. 101, No. 3 (Mar. 1998), pp. 1-6.



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up-to-date on their immunizations were likely not to be up-to-date for lead
screening.52

HHS has found some avenues through its National Immunization Program
to reach the at-risk population. The program seeks to increase
immunization rates in the preschool population through grants to each
state and 28 urban areas to implement immunization action plans. In 1995,
we reported on promising strategies for increasing immunization,
including provider-based strategies, such as assessing clinic
immunizations and offering feedback or creating reminder and recall
systems or registries to reduce missed opportunities for immunization.53
For example, over the past several years, CDC has developed the Clinic
Assessment Software Application to analyze providers’ records and
diagnose immunization problems at their sites. Providers and other clinic
personnel are then given feedback on their immunization activities. CDC
studies show this strategy to be highly effective in reducing missed
opportunities and improving immunization rates among children receiving
care at clinics, and a CDC immunization official told us that it may be
feasible and reasonable to modify the software to add the ability to review
lead screening. Such promising strategies also include improving
immunization rates by coordinating immunization services with large
public programs such as WIC. WIC is considered to be well suited to
coordination with immunization services, in part because participants
typically visit a program site with some regularity.54 Since 1997, CDC has
required grantees to employ such strategies as a condition of receiving
immunization grant funding.55 Further, since 1994, CDC has had in effect a




52
 Gerry Fairbrother and others, “Markers for Primary Care: Missed Opportunities to Immunize and
Screen for Lead and Tuberculosis by Private Physicians Serving Large Numbers of Inner-city
Medicaid-eligible Children,” Pediatrics, Vol. 97, No. 6 (June 1996), pp. 785-90.
53
 See Vaccines for Children: Reexamination of Program Goals and Implementation Needed to Ensure
Vaccination (GAO/PEMD-95-22, June 1995).
54
 Several studies have examined and reported on the benefits of various strategies linking
immunization to WIC participation. See, for example, Shefer and Mize and also Guthrie Birkhead,
Helen Cicirello, and John Talarico, “The Impact of WIC and AFDC in Screening and Delivering
Childhood Immunizations,” Journal of Public Health Management Practice, Vol. 2, No. 1 (1996), pp.
26-33.
55
  We reported in 1997 on states’ efforts to assess pockets of children in need of immunization and their
strengths and limitations. See CDC’s National Immunization Program: Methods Used to Identify
Pockets of Underimmunized Children Not Evaluated (GAO/HEHS-97-136R, Aug. 1997).



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                             memorandum of understanding with USDA to emphasize the importance of
                             immunizing children who receive WIC benefits.56

                             No similar agreement exists between CDC or HHS and USDA regarding lead
                             screening and treatment efforts. According to a CDC Lead Poisoning
                             Prevention Branch official and officials from two health departments we
                             contacted, WIC program emphasis on lead screening has decreased rather
                             than increased since a 1993 change in USDA policy regarding lead screening
                             in WIC clinics. In particular, a change in CDC recommendations regarding
                             allowable tests for conducting blood lead screening required a change in
                             WIC policy. As a nutrition program, WIC is required to screen participants
                             for iron deficiency anemia. Until 1991, when CDC lowered the threshold of
                             concern for lead toxicity, a screening test commonly used to diagnose
                             anemia—called the erythrocyte protoporphyrin (EP) test—was also
                             considered adequate for identifying elevated blood lead levels. CDC’s 1991
                             statement indicated that the EP test was not sensitive enough to identify
                             elevated blood lead levels under the new threshold values. Until this
                             change of policy, WIC had encouraged agencies to use the EP test for both
                             anemia and lead screening, and many states relied on WIC programs as
                             primary providers for lead screening services. Following CDC’s 1991 change
                             in policy, a 1993 WIC memorandum refocused WIC’s role in the lead
                             initiative from active participation in screening to the more limited role of
                             coordinating with other local health programs such as EPSDT, establishing
                             referral systems, providing information and counseling, and developing
                             appropriate plans of nutritional care for children who are affected.57


Medicaid Managed Care        The shift to managed care could add barriers to preventive health services
Offers Opportunities for     such as lead screening, since numerous concerns have been raised about
Increasing Screening Rates   the extent to which Medicaid contracts with managed care organizations
                             contain specific EPSDT requirements. However, research is also finding that
but Many States Have Yet     Medicaid managed care presents opportunities to increase access to
to Act                       prevention and early intervention services. State Medicaid agencies have
                             increasingly turned to managed care to cut health care costs while
                             ensuring health care access for Medicaid enrollees. From 1983 to 1996,
                             Medicaid managed care enrollment grew from around 750,000 to
                             13 million. On the basis of reported numbers from state Medicaid
                             programs, we estimate that nationally 42 percent of Medicaid recipients

                             56
                              Beginning with the fiscal year 1996 appropriation, the Subcommittee on Labor, HHS, Education, and
                             Related Agencies of the Senate Appropriations Committee has recommended in report language each
                             year that CDC ensure that immunization grantees reserve 10 percent of funds for immunization
                             assessment and referral services at WIC sites.
                             57
                               See WIC policy memorandum 93-31.



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under the age of 6 were enrolled in managed care plans as of June 30,
1997.58

Concern has been raised about the extent to which children enrolled in
Medicaid managed care plans are receiving services in line with EPSDT
requirements. In May 1997, HHS’ Office of Inspector General reported that
only 30 percent of the children 5 years old and younger who were enrolled
in managed care plans received all EPSDT services specified in the state
periodicity schedule. Nearly 50 percent of this group received no EPSDT
services at all. The Inspector General recommended that HCFA (1) revise its
EPSDT reporting requirements and data collection to emphasize the number
of children who receive all their EPSDT screens in a timely fashion,
(2) encourage states to actively notify managed care plans of enrollees due
for EPSDT exams and follow-up if EPSDT services are not rendered shortly
thereafter, (3) work with states to ensure timely managed care EPSDT
reporting, and (4) emphasize to states the need to define and clarify EPSDT
requirements in their Medicaid contracts with managed care plans. An
Inspector General official indicated that HHS was taking appropriate steps
to implement these recommendations and that the Office of the Inspector
General was continuing its monitoring of the recommendations.

Recent research has shown that many Medicaid contracts with managed
care organizations still do not address lead screening. In August 1998, the
George Washington University Center for Health Policy Research reported
on provisions on childhood lead poisoning prevention services in Medicaid
managed care contract documents (for contracts in effect during 1997).59
The center reported that only 20 of the 42 contract documents it reviewed
contained language addressing managed care organization duties related
to lead-related care, primarily screening. The center also reported that
contract documents rarely identified lead-related services either with
respect to quality assurance or as a specific reporting duty.

In contrast, this study and others have found that some states have used
their managed care contracts to build in EPSDT performance measures at
the outset. According to a recent survey, 21 of 31 states reviewed that have



58
 HCFA does not record data on the extent to which state Medicaid programs have children in this age
group enrolled in managed care arrangements. We derived this estimate from the responses to our
survey of state Medicaid directors, who reported on children under age 6 (1) in Medicaid managed care
and (2) in total covered by Medicaid as of June 30, 1997.
59
 See Elizabeth Wehr and Sara Rosenbaum, Medicaid Managed Care Contracting for Childhood Lead
Poisoning (Washington, D.C.: Center for Health Policy Research, School of Public Health and Health
Services, George Washington University Medical Center, Aug. 31, 1998).



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managed care programs include performance targets in their contracts.60
Hence, the contracts are vehicles through which state Medicaid agencies
can set specific reporting standards and require the providers to submit
data to measure their performance. For example, Wisconsin has
established performance goals in its managed care contracts, including
specific goals for blood lead screening, and has required managed care
organizations to report data to measure this performance. The state has
set as a performance goal that managed care organizations have an
85-percent lead screening rate by 1999. Annually, the state reports
performance comparisons for managed care and non-managed-care
providers. The 1995 comparison report found that managed care enrollees
under age 5 received more preventive care screens than those receiving
fee-for-service care. Lead testing among managed care enrollees was
almost twice as high as in the fee-for-service population (11.9 percent
versus 6.9 percent). According to the George Washington University
report, 11 of 42 contracts reviewed contained language establishing some
type of quality or performance standards relating specifically to lead.




60
 See Rosenbach and Gavin, “Early and Periodic Screening, Diagnosis, and Treatment and Managed
Care,” Annual Review of Public Health, No. 19 (1998), pp. 507-25.



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                     Once children’s elevated blood lead levels are identified, it is important
                     that they receive follow-up services, which can be complex and resource
                     intensive but according to experts are necessary to minimize adverse
                     health effects. CDC’s recommended follow-up services include periodic
                     retesting to ensure that lead levels decline and, for children who have
                     higher levels, clinical management, care coordination, and other services
                     such as investigations to determine the source of lead exposure. CDC
                     believes that data collected on the provision of follow-up services are not
                     reliable and, therefore, the extent to which these services are provided to
                     children who have elevated blood lead levels is largely unknown. Our
                     work at health centers and health departments across the country showed
                     gaps in the timeliness of follow-up testing and other services: Providers
                     miss opportunities to perform more timely follow-up tests, children do not
                     return to the health center, and parents do not comply with providers’
                     orders to have tests conducted. Another key problem is that state
                     Medicaid policies often do not support paying for services that CDC
                     recommends for treating children who have elevated lead levels, and most
                     programs lack formal arrangements with other health or housing agencies
                     regarding the treatment of children who are enrolled in Medicaid and have
                     elevated blood lead levels. Having established relationships between
                     providers and health and other agencies may become even more important
                     as increasing numbers of children are covered under Medicaid managed
                     care.


                     Public health experts consider follow-up testing and case management of
Recommended          children who have elevated blood lead levels to be important aspects of
Follow-Up Services   treatment, particularly to ensure that blood lead levels do not continue to
Can Be Complex and   rise. According to the American Academy of Pediatrics, the amount and
                     duration of a child’s exposure to lead are key factors in toxicity levels.
Resource Intensive   Early detection and source control are therefore important to minimizing
                     adverse consequences.61 Follow-up care for children identified with
                     elevated blood lead levels is considered uniquely multidisciplinary,
                     requiring close coordination between a child’s health care provider, local
                     public health department, and others. CDC indicates that to treat children
                     for elevated blood lead levels, the lead source must be identified and
                     controlled. Identifying how a child has been exposed to lead and
                     preventing recurring exposure can be complex and may involve many
                     more parties than the child’s health care provider. Because childhood lead
                     exposure is likely to be associated with poor and deteriorating

                     61
                      See the statement of the American Academy of Pediatrics, Committee on Environmental Health,
                     “Screening for Elevated Blood Lead Levels,” Pediatrics, Vol. 101, No. 6 (June 1998), pp. 1072-78.



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    communities, children who have elevated blood lead levels may also lack
    adequate housing, routine medical care, and good nutrition. CDC’s
    recommended treatment approaches vary depending on a child’s blood
    lead level:

•   CDC’s  recommended follow-up for levels between 10 and 19 µg/dl—the
    range in most children who have elevated blood lead levels—is generally
    to test at least every 3 to 4 months, make referrals for social services,
    educate families about lead, and possibly provide clinical management and
    environmental investigations if the elevation persists.62
•   For children whose lead levels are 20 µg/dl or higher, CDC indicates that it
    is critical to reduce a child’s exposure to lead. It recommends care
    coordination and investigations to determine the source of lead. CDC also
    recommends clinical management, including a clinical evaluation of the
    child’s medical history and history of housing and other environmental
    sources of exposure, the correction of nutrition problems, and a physical
    examination to identify language delay or other neurobehavioral or
    cognitive problems that should be referred to other appropriate programs.
    Children who have extremely high lead levels (45 µg/dl or higher) may
    need drugs to help reduce the lead toxicity, a treatment known as
    chelation therapy.63

    For children in need of comprehensive services, CDC recommends that a
    follow-up team address the complex and resource-intensive care required.
    The team should consist of the child’s health care provider, a care
    coordinator, a community-health nurse or nurse adviser, an environmental
    health specialist, a social services liaison, and a housing specialist.
    Generally, the child’s health care provider monitors the child’s blood lead
    levels, provides the direct medical treatment such as chelation therapy,
    and addresses any other medical or developmental issues that may arise.
    The community-health nurse or nurse adviser visits the child’s home,
    interviews the family about possible lead sources, educates the family
    about ways to reduce lead exposure, and links the family to other services.
    The environmental health specialist investigates the child’s environment,
    testing paint and taking other samples as needed to find and eliminate the


    62
      In its 1991 guidelines, CDC recommended that tests showing blood lead levels of 10 µg/dl or higher
    should be repeated in 3 to 4 months or less, depending on the lead level—the higher the level, the more
    frequent the testing. In its 1997 guidelines, CDC recommended even more frequent follow-up testing
    (retesting at 1- to 2-month intervals until blood lead levels have declined, lead hazards have been
    removed, and there are no new exposures). CDC also recommends clinical management and
    environmental investigation when two consecutive blood levels at least 3 months apart measure 15
    µg/dl.
    63
      In chelation therapy, drugs bind or chelate lead, thus reducing its acute toxicity.



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                         source of poisoning. See appendix IV for further information on federal
                         policies for treating children who have elevated blood lead levels.

                         The federal government has several other roles in lowering blood lead
                         levels. Federal Medicaid law requires that state Medicaid programs cover
                         any treatment or other medical assistance necessary to “correct or
                         ameliorate” physical and mental illnesses and conditions discovered
                         through an EPSDT screen. This law has been at issue in numerous lawsuits
                         related to defining “medically necessary” care.64 Determining what
                         constitutes medical treatment for an environmentally caused condition
                         can be difficult. HCFA has indicated that at a minimum investigations to
                         determine the source of lead exposure are important in treating a child
                         diagnosed with an elevated blood lead level. HCFA and HRSA policies
                         governing state Medicaid and health center programs generally
                         recommend that providers follow CDC’s recommendations.65 CDC grants for
                         lead poisoning prevention and surveillance (usually awarded to state and
                         local health departments) entail responsibilities for tracking and ensuring
                         follow-up care.


                         No national database exists for reliably determining the extent to which
National Data Are        follow-up services are provided. CDC requires its grantees to report on the
Lacking, but Health      environmental inspection of the homes of children who have elevated
Centers and Health       blood lead levels and on medical case management activities such as the
                         number of new cases identified, children treated with chelation therapy,
Departments Vary in      and cases closed. CDC officials indicated that this information is often
Providing Timely         incomplete and inconsistent. As a result, they said, it is generally not
                         useful to compare performance or draw generalizations about progress.
Services                 CDC officials indicated that they were reevaluating the data requirements
                         and planned to issue new requirements in 1999.


Health Centers Vary in   Our reviews at six health centers across the country showed differences in
Follow-Up Testing        the extent to which providers conduct follow-up tests and the extent to
                         which these are performed in line with CDC’s recommendations.66 At all six
                         centers, some children had no follow-up tests after the initial diagnosis of

                         64
                          See National Health Law Program and Texas Rural Legal Aid, Toward a Healthy Future—Early and
                         Periodic Screening, Diagnosis, and Treatment for Poor Children (Los Angeles, Calif.: Apr. 1995).
                         65
                          HCFA leaves discretion to providers with reference to CDC’s guidelines. HRSA requires that health
                         centers establish a protocol for following up abnormal results and indicates that health care providers
                         may use their professional judgment with respect to CDC’s guidelines.
                         66
                           We exclude Everett, Washington, because virtually no screening tests for lead were conducted there.



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                                         elevated blood lead levels. When we visited the centers in late 1997 and
                                         early 1998, 32 of the 102 children in our sample whose elevated blood lead
                                         levels had been identified in 1996 had not yet received any follow-up tests.
                                         Table 5.1 shows that the extent of sampled cases that did not receive
                                         follow-up tests ranged from 9 percent to 62 percent at the six health
                                         centers.67

Table 5.1: Extent to Which Children
Who Had Elevated Blood Lead Levels                                                                               Percent of children who
Did Not Receive Follow-Up Tests at Six                                                                           had elevated blood lead
Health Centers                                                                                                    levels and received no
                                         Health center site                                                               follow-up tests
                                         Atlanta, Ga.                                                                                     62
                                         Brooklyn, N.Y.                                                                                   13
                                         New Bedford, Mass.                                                                               32
                                         Philadelphia, Pa.                                                                                20
                                         San Antonio, Tex.                                                                                25
                                         Watsonville, Calif.                                                                                  9

                                         Almost half of the follow-up blood tests for the 102 children whose
                                         medical records we reviewed were not conducted within CDC’s
                                         recommended time period.68 The percentage of untimely follow-up testing
                                         at the six health centers ranged between 19 and 66 percent, as shown in
                                         table 5.2.




                                         67
                                           Some state Medicaid agencies and other researchers have similarly examined follow-up testing and
                                         treatment. For example, a 1996 Minnesota review of Medicaid screening and follow-up activities found
                                         that 18.4 percent of children who had elevated blood lead levels had received no documented
                                         intervention.
                                         68
                                           We reviewed the medical records of children who had elevated blood lead levels in 1996 to assess
                                         whether follow-up tests were performed with the frequency recommended in CDC’s 1991 guidelines.
                                         We used the 1991 guidelines since the cases were drawn from a time period before CDC’s
                                         November 1997 guidelines. Since some children did receive several follow-up tests, we based
                                         timeliness on the percentage of tests showing an elevated blood lead level that were followed by a
                                         subsequent test in the recommended time. We discuss our methodology and findings in appendix V.



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Table 5.2: Percentage of Untimely
Follow-Up Blood Lead Tests at Six                                                                           Percent of follow-up tests
Health Centers                                                                                                  not conducted within
                                                                                                            CDC’s recommended time
                                    Health center site                                                                        periodsa
                                    Atlanta, Ga.                                                                                           66
                                    Brooklyn, N.Y.                                                                                         19
                                    New Bedford, Mass.                                                                                     54
                                    Philadelphia, Pa.                                                                                      39
                                    San Antonio, Tex.                                                                                      48
                                    Watsonville, Calif.                                                                                    29
                                    a
                                     While we looked for follow-up tests within 4 months of the elevated blood level test, we found that
                                    in 58 of the 70 situations in which a test had not been conducted within 4 months, the test had
                                    also not been conducted even after 6 months. See appendix V for information on the criteria used
                                    for evaluating the timeliness of follow-up tests.



                                    The clinic in Everett, Washington, was largely not conducting lead
                                    screenings and thus had not identified any elevated blood lead levels for
                                    follow-up. According to the Washington State Department of Health lead
                                    registry, which contains all statewide blood lead test results, less than
                                    40 percent of children who had blood lead levels between 10 and 19 µg/dl
                                    in 1996 received timely follow-up testing. The department reported in
                                    June 1997 that about one-third of the tests conducted in the past year for
                                    children whose levels were 20 µg/dl and higher were not followed up with
                                    subsequent retests. It is at these levels that CDC recommends more
                                    intensive follow-up, including clinical management and environmental
                                    investigations to determine the source of lead.


Health Department Case              We evaluated certain cases to determine how CDC-supported lead
Studies Show Variation in           poisoning prevention and surveillance programs tracked them and
Tracking Children Who               ensured that the children received needed services.69 Specifically, for
                                    diagnoses of lead levels 20 µg/dl or higher, we determined what the
Have Elevated Blood Lead            CDC-supported lead poisoning programs (managed by the state or local
Levels                              health department) reported on the services they provided to the

                                    69
                                      Differences in services may to some extent reflect differences in the two types of CDC grant
                                    programs—for lead poisoning prevention and for surveillance—and their associated funding levels.
                                    While both types of grant applications are evaluated in part for plans or systems to help ensure the
                                    follow-up of children, a CDC official indicated that unlike prevention grants, surveillance grants have a
                                    funding limit of $95,000 and usually do not support health education, public health nurses, or
                                    environmental personnel. Washington and Texas were receiving surveillance grants at the time of our
                                    review, and New York City and the states of California and Massachusetts were receiving prevention
                                    grant funding. Georgia was not receiving CDC funding at the time of our review, but it did receive
                                    prevention grant funding in 1996. Philadelphia was receiving some CDC funding through the
                                    Pennsylvania grant.



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                                      children.70 While all but one of the state and local health departments had
                                      records of some of or all the cases we tracked, they varied widely in the
                                      extent to which they documented activities to ensure follow-up services.
                                      For example, for the three children in Brooklyn whose blood lead levels
                                      were 20 µg/dl or higher, the CDC-supported lead poisoning prevention
                                      program at the New York City Health Department documented significant
                                      activity in terms of home visits and environmental inspections and other
                                      action to address the identified lead hazards. In contrast, according to
                                      state and local health officials, the two children identified with levels of 20
                                      µg/dl or higher in Atlanta were not reported to the state or local health
                                      departments for follow-up. We could find no evidence that any follow-up
                                      testing or other services were provided to these children. Table 5.3 details
                                      the results of our case studies at the seven health center sites.

Table 5.3: Health Department
Follow-Up and Monitoring Activities   Health center site          Case status
for Children Who Had Blood Lead       Atlanta, Ga.                The two cases of 20 µg/dl or higher were not recorded in the
Levels of 20 µg/dl or Higher                                      state lead registry of laboratory reports on elevated blood lead
                                                                  levels, despite state law requiring such information. Neither the
                                                                  state nor the local health department was aware of these two
                                                                  cases and thus no follow-up activities, including testing, had
                                                                  been conducted by either organization. After our visit, the health
                                                                  center reported the cases to the health department.
                                      Brooklyn, N.Y.              The three cases were reported to the local health department,
                                                                  which made between three and six attempts to inspect each
                                                                  home for lead, successfully inspecting each home at least twice.
                                                                  In each case, the medical provider was contacted, an order to
                                                                  abate the lead was issued, and an inspector observed that the
                                                                  abatement was completed.
                                      Everett, Wash.              We did not test the Washington state system for tracking cases
                                                                  since we did not take a sample at the health center there.
                                                                  However, state health department officials told us that the state
                                                                  conducted environmental investigations for all children whose
                                                                  blood lead levels were higher than 20 µg/dl because most local
                                                                  health departments, which had this responsibility, did not have
                                                                  adequate resources to do so. The state health department
                                                                  reported that in 1997 16 children were diagnosed with levels
                                                                  higher than 20 µg/dl and that as of August 1998 9 had received
                                                                  home investigations, the cases of 3 had been closed, and the
                                                                  remaining 4 had not received follow-up for unknown reasons.
                                                                                                                                 (continued)




                                      70
                                        Four or fewer children had blood lead levels of 20 µg/dl or higher in our samples at each health
                                      center location. We asked state and local health departments tracking cases for those health center
                                      locations to provide information from their systems on these cases, including the date of the first
                                      investigation of the child’s home or environment to identify sources of lead, the number of visits to the
                                      home made by health officials such as public health nurses, the number of inspections of the home and
                                      other contacts, and whether any activities addressed the source of lead.



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                       Health center site         Case status
                       New Bedford, Mass.         The state health department had records of all four cases in our
                                                  sample and had conducted at least one home inspection in each
                                                  case. The lead in one child’s residence was abated, one child
                                                  had moved, and two children’s residences had no lead paint
                                                  violations.
                       Philadelphia, Pa.          The local health department had records of all four cases in our
                                                  sample and had records of environmental investigations in two of
                                                  the four cases. For one of the other cases, the health department
                                                  had no record of the laboratory tests that indicated a blood lead
                                                  level high enough to trigger an environmental evaluation. In the
                                                  other case, an investigation was attempted and four visits were
                                                  attempted or letters were sent but the health department was
                                                  unsuccessful in contacting the child, inspecting the home, or
                                                  otherwise intervening.
                       San Antonio, Tex.          The state health department had records of all four children in
                                                  our sample but did not maintain information on home visits or
                                                  other follow-up activities apart from blood tests. The local health
                                                  department indicated that, in one case, the child’s home was
                                                  visited and an environmental investigation was performed and
                                                  reported to the provider and the parents. Since the local health
                                                  department did not have records for the three other children in
                                                  our sample, we could find no evidence of follow-up activities
                                                  other than lead testing.
                       Watsonville, Calif.        The state health department had records for the two children
                                                  whose lead levels were 20 µg/dl or higher. It contracted with and
                                                  paid most local health departments to conduct case
                                                  management of children diagnosed with elevated blood lead
                                                  levels. The local health department records for both children
                                                  showed at least three home visits, but because exposure sources
                                                  could not be validated, activities to address the lead had not
                                                  been conducted. Both children had visited or lived in Mexico and
                                                  been exposed to potential lead sources such as candy and
                                                  pottery.

                       Note: Appendix VII discusses differences in states’ legal infrastructure for reporting elevated
                       blood lead levels and for requiring lead abatement activities.




                       We identified numerous barriers to conducting timely follow-up testing
Barriers to Ensuring   and other services that CDC recommends. As with screening, key barriers
That Children Who      include missed opportunities to perform follow-up tests when children
Have Elevated Blood    return to a health center and losing children to follow-up because they do
                       not return to the health center or because their parents do not comply
Lead Levels Receive    with the provider’s order for follow-up blood lead tests.
Timely Follow-Up



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Providers Miss                       Many health center providers miss opportunities for timely follow-up tests
Opportunities to Perform             when children return for other care. All the health centers we reviewed
Follow-Up Tests                      had written protocols for the providers to use in determining appropriate
                                     follow-up treatment, most of which recommended follow-up tests for
                                     children whose blood lead levels are 10 µg/dl or higher, at increasing
                                     frequency the higher the lead level. The follow-up tests could be scheduled
                                     in separate appointments or conducted in conjunction with other types of
                                     visits children made to the center. At six of the seven health centers,
                                     however, providers often did not perform tests within the recommended
                                     time periods even though the children visited a center for other care. (See
                                     table 5.4.)

Table 5.4: Missed Opportunities to
Provide Follow-Up Tests                                                                       Percent of late tests in
                                                                                              which follow-up could
                                     Health center site                                      have been done sooner
                                     Atlanta, Ga.                                                                  42
                                     Brooklyn, N.Y.                                                                20
                                     New Bedford, Mass.                                                            47
                                     Philadelphia, Pa.                                                             27
                                     San Antonio, Tex.                                                             33
                                     Watsonville, Calif.                                                           25



Children Do Not Return for           Health center officials told us that since the population they serve tends to
Follow-Up Care                       be transient, children often do not return for services. Our review of the
                                     medical records supports this observation and the providers’ concern that
                                     some follow-up issues are beyond their control. In 22 of the 102 cases
                                     reviewed, the children never returned after the elevated blood lead level
                                     was identified.

                                     Another associated problem beyond the control of health care providers is
                                     that parents do not always comply with their orders for follow-up blood
                                     tests. As with screening tests, parents may be required, as they are in
                                     California, to take their children to another location for tests. In 12 of 102
                                     cases we reviewed, we found that the provider ordered a blood test but
                                     that there was no indication the test was conducted.




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                           Medicaid law requires the states to cover treatment and other medical
State Medicaid             assistance necessary to correct or ameliorate conditions identified through
Programs Often Do          EPSDT screening tests (such as elevated blood lead levels). However, our

Not Reimburse or           review indicates that the states are considering their coverage for certain
                           treatment and follow-up services deemed important by CDC and HCFA as
Formally Coordinate        optional. In addition, most state Medicaid agencies lack formal agreements
Key Follow-Up              with health departments and other agencies involved in funding, tracking,
                           and providing screening and treatment services. Such collaborations may
Services                   be increasingly important as managed care arrangements cover increasing
                           numbers of children in Medicaid, but recent research indicates that state
                           Medicaid agencies have yet to consider the need for such collaborations in
                           their managed care contracts.


Fewer Than Half of State   In our survey of 51 state Medicaid programs, we found that many lack
Medicaid Agencies          policies to cover investigative services to determine the source of lead
Reimburse for Key          exposure or care coordination and case management to ensure that
                           children who have elevated blood lead levels receive the social,
Follow-Up Services         environmental, and other services they need.71 While all the programs
                           except one cover follow-up testing by public or private laboratories or
                           other entities, only 23 reimburse for investigative services to determine the
                           source of lead exposure, and 20 reimburse for case management and care
                           coordination. Only 14 states reported that the state Medicaid program
                           reimburses for both.72

                           As with screening, part of the reason why state Medicaid programs are not
                           following HCFA policy may be unclear EPSDT policies coupled with the
                           difficulty of determining what are “medically necessary” treatment
                           services for children with an environmentally caused condition. HCFA has
                           in the past supported CDC’s position that investigative services are
                           important to treating elevated blood lead levels but has not taken the

                           71
                             These policies may also be affecting screening rates. Health officials in some locations indicated that
                           children are not screened in part because of insufficient resources and mechanisms for addressing
                           elevated blood lead level cases. A 1992 survey of state health officers conducted by the Association of
                           State and Territorial Health Officials found that major reported barriers to screening were insufficient
                           resources for environmental follow-up and abatement.
                           72
                             In the absence of a state policy for covering such services, the state may still be obligated under
                           Medicaid law to reimburse for treatments or other forms of medical assistance that providers deem
                           necessary to address a child’s health condition. However, it may then be incumbent on beneficiaries
                           and providers to seek payment for such services. According to the April 1995 report of the National
                           Health Law Program and Texas Rural Legal Aid, states that have not previously covered a service in
                           their state plan are likely to lack processes to handle requests for coverage and claims payment.
                           According to this report, in these cases, the lack of an approval process often means that when a claim
                           is submitted it will be handled by denying coverage for treatment or that providers do not submit
                           claims for services in the first place.



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                            position in regulations or policy that all states are expected to cover such
                            services or case management specifically for lead-poisoned children. In
                            line with CDC’s recommendations, HCFA in a 1992 memorandum to regional
                            offices indicated that locating the source of lead is an “integral part of the
                            management and treatment of a child diagnosed with an elevated blood
                            lead level.” However, in this memo HCFA also indicated that investigation
                            “may” be a covered Medicaid benefit, and other references in HCFA’s
                            Medicaid manual and memos use similar language in indicating that
                            investigation “may” be a covered service.

                            As one of the few states where the Medicaid program covers lead
                            investigations, case management, and other services for children who have
                            elevated blood lead levels, California provides an example of a state health
                            department that has worked to ensure that adequate resources are
                            available and that responsibilities are coordinated for treating
                            lead-poisoned children. The Childhood Lead Poisoning Prevention Branch
                            of the California Department of Health Services helps provide for
                            screening, care coordination, environmental investigation, and other
                            services for California’s at-risk children. The program is partly supported
                            by fees assessed on industries that have contaminated the environment
                            with lead. The program has also negotiated reimbursements for costs
                            associated with case management activities for children in Medicaid who
                            have elevated blood lead levels and contracts with local health
                            departments to perform such activities. In addition to case management
                            and environmental inspection, the program has arranged for state
                            Medicaid coverage of medical nutrition therapy and outreach and
                            interagency coordination of blood lead testing and follow-up services.
                            Data from California’s lead exposure surveillance system indicate that
                            environmental investigations are performed in 95 percent of cases of
                            lead-poisoned children.


Few State Medicaid          Another tool for helping ensure that services are provided is a formal
Agencies Report Formal      agreement between the state Medicaid agency and the health departments,
Collaborations With Other   housing departments, or others with responsibilities for paying for and
                            providing services to children who have elevated blood lead levels. In our
Agencies                    survey, only ten state Medicaid programs reported having such
                            arrangements by providing documentation of agreements. The 1994
                            evaluation of CDC’s Lead Poisoning Prevention Branch found that although
                            collaborative links to address the needs of children are essential for both
                            policy and service delivery, few CDC grantees had been successful in




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                           building such links.73 How well applicants for CDC grants demonstrate
                           collaboration with important partners such as state Medicaid programs to
                           ensure that adequate services are provided to children who have elevated
                           blood lead levels is only a small part of application evaluations.74 Further,
                           how or whether Medicaid agencies collaborate with CDC grantees or public
                           health departments is not routinely reviewed.

                           Formal collaborations work well in Rhode Island. The state’s health
                           department and its Department of Human Services (which administers the
                           Medicaid program) have a formal agreement regarding responsibilities for
                           case management payments, and the departments were actively
                           collaborating at the time of our review to develop “lead centers” to provide
                           comprehensive services to the state’s children diagnosed with lead
                           poisoning. Initial proposals were that such centers would provide
                           intensive case management, assist families with housing, conduct housing
                           inspections, educate parents, offer education on proper cleaning
                           techniques, and make referrals for coordinating all needed medical and
                           nutrition services.


Medicaid Managed Care      Formal coordination between Medicaid and other agencies may become
Presents Challenges and    even more important as increasing numbers of children in Medicaid are
Opportunities to Improve   covered by managed care arrangements, changing traditional health
                           department and provider roles for ensuring treatment services. On the one
Treatment Services         hand, some health departments and others are concerned that many
                           managed care organizations are not set up to handle the coordination of
                           care that is expected as the major treatment for children who have
                           elevated blood lead levels. On the other hand, the availability of a “medical
                           home” for children in managed care arrangements may enhance the
                           continuity of care and offer a network of providers not otherwise available
                           or easily accessible.75

                           Recent research indicates that state Medicaid agencies have largely not
                           considered how managed care organizations should coordinate with
                           health departments and others in treating children who have elevated
                           blood lead levels and other conditions. The 1998 study of Medicaid
                           managed care contracts supported by CDC and conducted by the Center for
                           Health Policy Research of the George Washington University Medical
                           Center identified concerns about the extent to which managed care

                           73
                             Macro International, Inc., Executive Summary.
                           74
                             CDC indicated that it weighted collaboration more heavily in 1997 than in earlier years.
                           75
                             See Rosenbach and Gavin.


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    contracts clarified expectations regarding the coordination of care. The
    center found that very few Medicaid contract documents addressed either
    medical follow-up for children for whom screening showed elevated blood
    lead levels or the integration of medical follow-up with public health
    agency activities to identify and reduce lead hazards in these children’s
    homes. The study reported that while managed care is viewed as a means
    of providing a medical home for children in Medicaid and creating
    administrative systems for tracking and ensuring the provision of care,
    many states have yet to really grasp the potential of managed care to
    improve the quality of lead-related treatment services.76

    Our visits to two programs known for model case management of children
    who have elevated blood lead levels also found evidence of changing roles:

•   Officials at the Kennedy Krieger Institute in Baltimore, Maryland, told us
    that their program for treating children for elevated blood lead levels
    depends largely on Medicaid funding and had seen a decline of more than
    50 percent in patient referrals in 1 year since the state had implemented
    managed care within its Medicaid population. Officials expressed concern
    that managed care organizations would attempt to address the treatment
    of lead-poisoned children on their own without adequate knowledge of its
    complexities.
•   Officials at the Westchester County Health Department in New York
    indicated that since managed care had been implemented there in 1995,
    their role regarding children who have elevated blood lead levels had
    changed significantly. Before 1995, the county was the local entity
    responsible for case management for all lead-poisoned children. With the
    advent of managed care, the county both acts as a subcontractor of
    managed care plans—contracted to perform case management
    services—and oversees the performance of managed care plans’ screening
    and treatment activities. Officials indicated that a major challenge was to
    determine the effect of Medicaid managed care on lead screening and case
    management. They said that they were developing methods of monitoring
    managed care organization activities to ensure that children who have
    elevated blood lead levels receive needed care.




    76
      Wehr and Rosenbaum.



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              The past success in dramatically reducing the number of children who
Conclusions   have elevated blood lead levels has created new challenges for addressing
              this public health problem. Despite low screening rates, the number has
              been reduced by eliminating lead sources in gasoline, food sources, and
              paint. Today, most children who have elevated blood lead levels have
              relatively low levels compared with levels in earlier years. However,
              research is increasingly showing that even low levels of lead present a
              significant cost to children’s potential and to their families, educators, and
              society at large. Since most children who have elevated blood lead levels
              are likely to have no overt symptoms, lead poisoning is a silent problem
              whose solution depends on proactive efforts to identify it. Identifying the
              children among the millions who are considered to be at risk because they
              live in poverty or older homes requires the concerted effort of public
              health officials, providers, and parents. New information points to a need
              for more diligent state and federal program involvement to ensure that
              at-risk children are screened and treated. National data show that most of
              the 890,000 young children who are estimated to have elevated blood lead
              levels have not been screened for lead and remain undetected, and most of
              these children are served by federal health care programs.

              The federal role has been to set policies and requirements for federally
              supported health financing and service delivery programs and to support
              lead poisoning surveillance and prevention through grant programs.
              However, these programs do not yet ensure that screening and follow-up
              occurs. State implementation of federal policies has been spotty, and low
              national screening rates even within federal health care programs
              requiring periodic screening services reflect barriers to screening and
              treating children. The services that children receive also vary widely
              across the country, depending partly on whether state Medicaid agencies
              cover services such as investigations to determine the source of lead
              exposure and whether states and localities have passed laws and
              established systems to ensure that necessary services are received. While
              variation between states’ programs and screening rates may be warranted
              to the extent that the risk for elevated blood lead levels varies between
              states and even within a state, most states lack representative, reliable
              prevalence and screening data upon which to make good determinations
              of who should and should not be screened.

              HHS has done little to monitor the provision of lead screening services to
              children in federal health care programs, and state Medicaid programs
              often do little to monitor providers’ compliance with federal screening
              policies. Improving federal monitoring of state and providers’ compliance



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                  is one option for improving screening. However, the success of such
                  efforts may be limited, if providers remain unconvinced that lead
                  poisoning is a risk to the children they serve. Therefore, ensuring the
                  availability of data to more conclusively establish the extent of the risk
                  and to target limited resources is an important federal role.
                  Representative, reliable local data on the extent to which children have
                  elevated blood lead levels would help providers identify them more cost
                  effectively and would help convince parents and providers of the need to
                  screen. Such data could also be used to give federally supported health
                  care programs more flexibility in basing their screening policies on the
                  best available local data on children at risk.

                  The biggest challenge to meeting the HHS goal of eliminating lead poisoning
                  by 2011 may be coordinating the efforts of the many players that help
                  address this environmental health condition. Coordination must start at
                  the federal level with those who set federal lead screening and treatment
                  policies. Although managed care may complicate coordination as
                  traditional health care delivery roles change, it also offers the opportunity
                  to ensure that children receive a wider range of preventive health and
                  treatment services by providing the opportunity to clarify expectations
                  about providers’ performance in managed care contracts.

                  Lead screening could also increase if more at-risk children used preventive
                  health care services and if interventions for improving access to various
                  services were integrated. In recent years, the federal government has
                  supported state development of interventions such as the use of WIC clinics
                  to ensure that children are immunized and systems for assessing
                  providers’ immunization rates. These efforts could serve as models or
                  avenues for increasing lead screening.


                  To improve federal efforts to ensure that federal health care programs
Recommendations   reach at-risk children in need of screening and treatment for elevated
                  blood lead levels, we are making a number of recommendations. These
                  recommendations would improve (1) the information at the state and local
                  levels needed to better target screening efforts to those at highest risk,
                  (2) enforcement and monitoring of federal screening and treatment
                  policies, (3) state Medicaid contracts with managed care organizations,
                  (4) the policies regarding services that children who have elevated blood
                  lead levels should receive, and (5) the coordination between lead
                  poisoning screening and treatment efforts and other preventive health care
                  programs.



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Improving Information           To improve the awareness of providers and the public about the
                                prevalence of elevated blood lead levels among young children in their
                                communities and to enhance the effectiveness of targeted screening
                                efforts, HCFA and CDC should work more closely with state Medicaid and
                                CDC-supported programs to encourage information-sharing and the
                                development of data needed to better identify at-risk children. Specifically,

                            •   state Medicaid programs should be encouraged to work with state health
                                departments to develop systems to identify the prevalence of elevated
                                blood lead levels among children in Medicaid and
                            •   CDC should require grant applicants to (1) demonstrate that they have, or
                                have systems to obtain, representative, reliable data on the prevalence of
                                elevated blood lead levels in their states or communities or to commit to
                                conducting periodic surveys to obtain such data and (2) commit to
                                developing mechanisms for distributing such information to the public and
                                providers.


Improving Screening Rates       To improve screening rates within federal health care programs, HCFA and
                                HRSA should improve the monitoring of adherence to federal lead screening
                                policies within the Medicaid and Health Center programs. Specifically,

                            •   HCFA  should require state Medicaid agencies to report on the lead
                                screening services that are provided to children within the EPSDT program
                                and to document progress in meeting lead screening performance goals.
                                HCFA should require the states that do not meet expectations to develop
                                plans for improving their performance.
                            •   HRSA should use current monitoring mechanisms to better ensure that
                                health centers follow all federal lead screening policies.
                            •   HCFA and HRSA should develop a process for waiving universal lead
                                screening requirements when state programs can demonstrate that they
                                have representative and reliable data and data systems upon which to base
                                local policies.


Improving Managed Care          To ensure that state Medicaid agencies’ managed care contracts clearly
Contracts                       delineate appropriate lead screening and treatment responsibilities, HCFA
                                and CDC should work together to provide guidance to state Medicaid
                                agencies on including lead screening and treatment protocols in managed
                                care contracts.




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Improving Reimbursement      To ensure that state Medicaid agencies more consistently provide for
for Services                 reimbursement for services for lead-poisoned children, HCFA should clarify
                             in regulation or Medicaid policy the expectation that, in line with CDC
                             recommendations, all state Medicaid agency EPSDT programs include
                             reimbursements for investigations to determine the source of lead
                             exposure and case management services for children identified with
                             elevated blood lead levels. Further, HCFA should consult with CDC to
                             delineate and clarify its expectations for the other services it deems
                             medically necessary to treat children who have elevated blood lead levels.


Integrating Lead Screening   To improve the efficiency and effectiveness of lead screening and other
With Other Preventive        preventive health care efforts and to marshal federal health care resources
Health Care for Children     for reaching at-risk children, HHS should explore options for better
                             coordinating interventions to improve lead screening with other
                             preventive health services such as immunization. One such option HHS
                             should consider would establish a formal agreement or requirements for
                             coordinating HHS’ lead screening and treatment activities with those of the
                             WIC program.



                             HHS commented on a draft of our report in a December 22, 1998, letter. HHS
Agency Comments              generally agreed with the recommendations of the report. HHS provided
and Our Evaluation           several technical comments, which were incorporated into our report as
                             appropriate, and several clarifications and qualifications, which are
                             discussed below. HHS’ letter is printed in appendix VIII.

                             HHS agreed with our conclusion that managed care presents additional
                             opportunities to improve Medicaid services for lead screening and
                             treatment. However, HHS did not agree with our conclusion that the
                             transition to managed care may also complicate efforts toward
                             coordinating the many players needed to address lead poisoning,
                             indicating that the report does not provide evidence of such a conclusion.
                             As discussed in the report, our conclusion is based partly on the research
                             conducted by George Washington University and others showing that
                             states have frequently not acted on the opportunities that managed care
                             presents to improve these services. Also as indicated in the report, it rests
                             on information regarding the effect managed care is having on how health
                             departments and other providers ensure that children who have elevated
                             blood lead levels receive needed follow-up services. In considering HHS’
                             comments, we have modified the report to distinguish between
                             opportunities that are not yet acted upon and challenges faced by



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    changing roles in the delivery. HHS also suggested, and we concurred, that
    the title of the report should be modified to avoid the implication that CDC
    was the report’s main focus in reaching at-risk children.

    In regard to our recommendation that HHS develop better data on the
    prevalence of lead poisoning in particular geographic locations, HHS agreed
    that better prevalence data would be valuable. However, HHS also raised
    concerns about how this could be done, expressing concern about the use
    of the NHANES for this purpose and citing instead planned improvements to
    its surveillance system to ensure that consistent data are collected. We
    recognize the limitations of the NHANES for assessing prevalence within
    local areas and did not intend to suggest that it be used to assess local
    prevalence levels. We have modified our report accordingly. We continue
    to believe that until surveillance data can be shown to be reliable for
    particular states or areas, grantees should be required to commit to
    periodic surveys such as focal surveys of high-risk or other areas to gain
    data for areas of concern (suggested as an option by HHS in its comments).

    HHS also agreed that better information on screening rates within federal
    health care programs is needed. HHS pointed out several reasons why
    developing screening rate information is problematic, including additional
    administrative burdens on state Medicaid agencies, but indicated that it is
    committed to working with its stakeholders to develop and improve data
    collection. HHS indicated that it would initiate appropriate actions to
    respond to the parts of our recommendation related to improving health
    center oversight and establishing a waiver process from universal
    screening requirements for states that can demonstrate low-prevalence
    communities.

    HHS agreed with our remaining three recommendations concerning
    improving managed care contracts, reimbursement for services, and
    integration with other federal programs. In this regard, HHS cited several
    specific actions it had taken or planned to take. Specifically:

•   CDC will continue to further develop, and HCFA will encourage states to use,
    model Medicaid managed care contract language to help ensure that
    high-risk children are screened and receive appropriate timely follow-up
    services.
•   HCFA will clarify its policy to the states on requirements that all appropriate
    treatment coverable under Medicaid should be provided to children who
    have elevated blood lead levels.




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•   HHS has recently rechartered its CDC Advisory Committee on Childhood
    Lead Poisoning Prevention to include representatives from HCFA and HRSA,
    with working groups directed at addressing a number of issues in our
    report.

    Because the report discusses the role of WIC in lead screening, we provided
    a copy of a draft of the report to USDA program officials for review. In
    commenting on the draft, the Associate Deputy for Special Nutrition
    Programs noted that although WIC does not have a specific legislative
    mandate for lead screening, it often conducted the lead screening test in
    conjunction with required anemia testing until CDC revised the protocols
    for measuring blood lead levels (calling for more sensitive and
    significantly more costly procedures than were used routinely in WIC). The
    Associate Deputy stated that although WIC remains committed to lead
    screening, it is not funded for blood testing beyond the general scope of an
    anemia test. The Associate Deputy also said that if new technology and
    protocols are developed that could permit lead screening without further
    appreciable cost or time beyond which WIC usually devotes to anemia
    screening, USDA would be pleased to work with CDC to determine the
    feasibility of using them in WIC clinics. USDA provided us with technical
    comments that we incorporated as appropriate.




    Page 66                                          GAO/HEHS-99-18 Lead Poisoning
Page 67   GAO/HEHS-99-18 Lead Poisoning
Appendix I

Methodology and Results of NHANES Data
Analysis

                      The National Health and Nutrition Examination Survey (NHANES),
                      conducted multiple times since 1960 by the National Center for Health
                      Statistics of the Centers for Disease Control and Prevention (CDC), is
                      designed to provide national estimates of the health and nutrition status of
                      the noninstitutionalized civilian population of the United States aged 2
                      months and older. Our analysis was based on the NHANES data gathered
                      during NHANES III, Phase 2, which was conducted from October 1991
                      through September 1994 and represents the most current information
                      available.77 Details of the survey design, questionnaires, and examination
                      components are published in the NHANES III Plan and Operation reference
                      manual.78


                      The NHANES sample selection process, along with the weighing of
The NHANES            participants, is designed to ensure that the sample is nationally
Sampling Process      representative of the U.S. civilian noninstitutionalized population 2
                      months of age and over. The selection of persons to participate in NHANES
                      had four steps. First, the 13 largest counties were selected automatically
                      and 68 other counties were selected randomly, yielding a total sample of
                      81 counties. Second, geographic areas were randomly selected within
                      those counties. Third, households and certain other types of group
                      quarters (such as dormitories) were selected within those areas to identify
                      potential participants.79 Fourth, specific individuals in selected households
                      were identified on the basis of demographic characteristics. The National
                      Center for Health Statistics has published the details of the survey design
                      and weighing methods.80


                      Persons participating in NHANES were interviewed extensively and given a
The Variables and     thorough physical examination in which a blood sample was taken. Data
Definitions We Used   collected from the interviews, physical examinations, and blood samples

                      77
                        The NHANES III survey had five goals: (1) estimate the national prevalence of selected diseases and
                      risk factors, (2) estimate national population reference distributions of selected health characteristics,
                      (3) document and investigate reasons for long-term trends in selected diseases and risk factors,
                      (4) contribute to an understanding of disease origins and causes, and (5) investigate the natural history
                      of selected diseases.
                      78
                       National Center for Health Statistics, “Plan and Operation of the Third National Health and Nutrition
                      Examination Survey, 1988-94,” Vital Health Statistics, Vol. 1, No. 32 (1994).
                      79
                       NHANES III oversampled selected subpopulations to increase the reliability of estimates. These
                      subpopulations were children aged 2 months through 5 years, blacks, Mexican Americans, and persons
                      60 years old or older.
                      80
                       “Weighing and Estimation Methodology Executive Summary,” National Health and Nutrition
                      Examination Survey III (Rockville, Md.: Westat, Inc., 1996).



                      Page 68                                                             GAO/HEHS-99-18 Lead Poisoning
                       Appendix I
                       Methodology and Results of NHANES Data
                       Analysis




                       varied with the participants’ age. For our analysis, we used the blood lead
                       levels derived from the blood samples for children aged 1 through 5. We
                       also used specific information gathered during the interviews:

                   •   health insurance status, including Medicaid status;
                   •   household income;
                   •   family participation in the Special Supplemental Nutrition Program for
                       Women, Infants, and Children (WIC); and
                   •   previous tests for blood lead.

                       Of the 15,427 persons examined in NHANES III, Phase 2, the survey results
                       for 2,350 children aged 1 through 5 years contained data on blood lead
                       levels, health insurance status, WIC participation, and history of blood lead
                       screenings.81 We excluded from our analysis some children who may be
                       eligible for federal health care programs in order to present conservative
                       estimates of the prevalence of elevated blood lead levels. We excluded
                       children whose income, insurance status, or WIC participation was
                       unknown.

                       The variables and population estimates that we selected were consistent
                       with those CDC used to estimate the prevalence of elevated blood lead
                       levels among the population at large. CDC defined low-income persons as
                       persons whose household income was 130 percent of the federally defined
                       poverty level or less and old housing as housing built before 1946.82


                       We reviewed the NHANES design, data reliability checks, and reporting
Data Reliability       guidelines before using its data. We also compared the NHANES-computed
                       estimates with Bureau of the Census population estimates, reports on the
                       Medicaid population by the Health Care Financing Administration (HCFA),
                       and Department of Agriculture (USDA) estimates on the WIC population.
                       NHANES estimates for the number of children receiving Medicaid, low
                       income and uninsured, or participating in WIC were generally consistent




                       81
                        In some instances, the NHANES survey had information on some of these questions but not on
                       others. When we used those questions in our analysis, we excluded the children whose survey results
                       were missing.
                       82
                        Our definition of the low-income population was consistent with CDC’s but differed from that used
                       by the Health Resources and Services Administration (HRSA). HRSA targets low-income populations
                       whose income is 200 percent of the poverty level or less. We used CDC’s more conservative definition
                       of low income in order to maintain consistency with CDC’s published reports on blood lead levels.



                       Page 69                                                          GAO/HEHS-99-18 Lead Poisoning
                   Appendix I
                   Methodology and Results of NHANES Data
                   Analysis




                   with estimates published by HCFA, the Bureau of the Census, and USDA.83
                   On the basis of these reviews and comparisons, we concluded that the
                   NHANES data were sufficiently reliable to meet our objectives.



                   The tables in this appendix show the estimates and their confidence
Analysis Results   intervals from the NHANES data. There is a 5-percent chance that the actual
                   number is outside these limits.84 While the comparatively small sample
                   size of some subpopulation categories results in a relatively wide range
                   between the high and low estimates, the numbers of children at the low
                   ends of these estimates remain substantial.

                   A small number of the means and confidence intervals we present vary
                   slightly from those we presented in our previous reports because of slight
                   changes in estimation techniques and methods as suggested by a National
                   Center for Health Statistics official.85




                   83
                     The NHANES III, Phase 2, estimate for children in Medicaid aged 1 through 5 between 1991 and 1994
                   was 6,274,000. The HCFA estimate for fiscal year 1993 (the midpoint for NHANES III, Phase 2) was
                   6,632,000. The NHANES III, Phase 2, estimate for the number of low-income children aged 1 through 5
                   who did not have health insurance while participating in NHANES was 1,086,000. The Bureau of the
                   Census 1993 estimate for the number of poor children aged 1 through 5 who did not have health
                   insurance was 1,224,000. The NHANES III, Phase 2, estimate for children in WIC aged 1 through 4
                   years between 1991 and 1994 was 3,891,000. USDA’s estimate for the number of children aged 1
                   through 4 in WIC as of April 1994 was 3,465,000. An undetermined portion of the difference between
                   the NHANES and USDA estimates may stem from the nature of the WIC participation question in the
                   NHANES survey, which requested information on the participant’s status in the past month. The USDA
                   estimate does fall within the 95-percent confidence interval for the NHANES estimate.
                   84
                    Means, proportions, and standard errors were obtained by using Software for Survey Data Analysis
                   (SUDAAN), as suggested in the NHANES III Analytic and Reporting Guidelines.
                   85
                     Following a suggestion from a National Center for Health Statistics official, we used only the weight
                   for children older than 1 who were examined away from home (only children who were younger than 1
                   year old were examined at home).



                   Page 70                                                           GAO/HEHS-99-18 Lead Poisoning
                                    Appendix I
                                    Methodology and Results of NHANES Data
                                    Analysis




Table I.1: Estimated Number of
Children Aged 1 Through 5                                                                             Estimate
                                                                Sample size              Mean         Lower limit        Upper limit
                                                  a                                            b
                                    All children                        2,744      20,183,000             16,895,000      23,472,000
                                    Children in Medicaid                   984      6,275,000              5,484,000       7,066,000
                                    Low-income
                                    uninsured children                     261      1,086,000               908,000        1,263,000
                                                      c
                                    Children in WIC                        678      3,891,000              3,314,000       4,469,000
                                    Other childrend                     1,014      11,947,000             11,119,000      12,774,000
                                    a
                                     The sample analyzed was for all children regardless of whether federal health care program
                                    status and blood lead results were known. For other samples we analyzed, we excluded children
                                    whose survey results were missing responses to questions used in our analysis.
                                    b
                                     CDC weighted the NHANES sample to approximate the Bureau of Census 1993
                                    undercount-adjusted Current Population Survey.
                                    c
                                     Children participating in WIC may also be participating in the Medicaid program or may have low
                                    incomes and no health insurance. These figures are for ages 1 through 4, since WIC is for
                                    children through age 4 only.
                                    d
                                    Children who had health insurance and were not in Medicaid or WIC.



Table I.2: Estimated Number of
Children Aged 1 Through 5 Who Had                                                                     Estimate
Elevated Blood Lead Levels                                      Sample size              Mean         Lower limit        Upper limit
                                    All children                        2,386         890,000               557,000        1,223,000
                                    Children in
                                    Medicaida                              984        535,000               254,000          815,000
                                    Low-income
                                    uninsured childrena                    261          67,000                 1,000         145,000
                                                      a
                                    Children in WIC                        678        452,000               262,000          642,000
                                    Other children                      1,014         202,000               107,000          297,000
                                    Note: CDC defines elevated blood lead levels as 10 µg/dl or higher.
                                    a
                                     Numbers may not add up because children can be eligible for more than one federal health
                                    program.




                                    Page 71                                                         GAO/HEHS-99-18 Lead Poisoning
                                     Appendix I
                                     Methodology and Results of NHANES Data
                                     Analysis




Table I.3: Estimated Number of
Children Aged 1 Through 5 Screened                                                                     Estimate
for Elevated Blood Lead Levels                                   Sample size              Mean         Lower limit       Upper limit
                                     All children                        2,350       2,319,000             1,750,000       2,888,000
                                     Children in
                                     Medicaida                              966      1,183,000              862,000        1,504,000
                                     Low-income
                                     uninsured childrena                    260        182,000               83,000          281,000
                                     Children in WICa                       669        682,000              434,000          930,000
                                     Other children                         999        868,000              583,000        1,152,000
                                     Note: CDC defines elevated blood lead levels as 10 µg/dl or higher.
                                     a
                                      Numbers may not add up because children can be eligible for more than one federal health
                                     program.



Table I.4: Estimated Number of
Children Aged 1 Through 5 With                                                                         Estimate
Undetected Elevated Blood Lead                                   Sample size              Mean         Lower limit       Upper limit
Levels
                                     All children                           145        557,000              455,000          659,000
                                     Children in
                                     Medicaida                               95        347,000              266,000          427,000
                                     Low-income
                                     uninsured childrena                     12          19,000               1,000              36,000
                                     Children in WICa                        68        301,000              223,000          378,000
                                     Other children                          27        120,000               55,000          186,000
                                     Note: CDC defines elevated blood lead levels as 10 µg/dl or higher.
                                     a
                                      Numbers may not add up because children can be eligible for more than one federal health
                                     program.




                                     Page 72                                                         GAO/HEHS-99-18 Lead Poisoning
Appendix II

Methodology and Results of Medicaid Billing
Data Analysis

                       To assess available data on state Medicaid screening for children covered
                       by fee-for-service arrangements, we analyzed HCFA’s State Medicaid
                       Research Files. This database provides summarized information on
                       Medicaid eligibility, claims, and utilization for states that participate in the
                       Medicaid Statistical Information System. To facilitate research, HCFA has
                       adjusted and reformatted the data and added service and eligibility codes.
                       The data are arranged in five separate research files: Drug Claims,
                       Inpatient Claims, Long-Term Care Claims, Other Ambulatory Claims, and
                       Person Summary. Claims information is unavailable for children in
                       Medicaid managed care arrangements, and reliable data on health care
                       services provided to these children were not available at the time of our
                       review.


                       We used the Person Summary and the Other Ambulatory Claims files to
Analysis Methodology   determine the percentage of children who had received a blood lead test
                       within 6 months (on either side) of their first or second birthday. The
                       Person Summary file contains characteristics such as birthday and dates
                       of coverage for each person covered by Medicaid during the year. The
                       Other Ambulatory Claims file contains records for medical services
                       received.

                       Our analysis was limited to 1994 and 1995 data from 15 states, all states for
                       which complete 1994 and 1995 data were available. We looked only at
                       those 2 years because they were the latest years for which the State
                       Medicaid Research Files data were available after HCFA’s requirement for
                       universal Medicaid screening went into effect in 1992. Thirty-one states did
                       not provide data for 1994 and 1995. We dropped two states because we
                       were able to access only part of the information we needed. We dropped
                       three states because we were informed that at least one government
                       laboratory did not bill Medicaid by individual children, making it
                       impossible to determine from the billing data whether the children in
                       those states had been given blood lead tests.

                       We performed separate analyses for children at ages 1 and 2. To provide
                       conservative estimates of children not screened, we limited our analysis to
                       children for whom the data indicated that they had an opportunity to
                       receive a blood lead test that Medicaid paid for. Specifically, we limited
                       our analysis to a cohort of children who (1) were in Medicaid for 6 months
                       before and after their birthday, (2) had their first or second birthday
                       between July 1994 and June 1995, (3) had made at least one visit to a
                       Medicaid provider, (4) had no evidence of ever having been in managed



                       Page 73                                             GAO/HEHS-99-18 Lead Poisoning
                   Appendix II
                   Methodology and Results of Medicaid Billing
                   Data Analysis




                   care, and (5) had no evidence of having had private health insurance
                   before 19 months for 1-year-olds and 31 months for 2-year-olds.

                   To determine whether a child received a blood lead test, we reviewed
                   outpatient claims for evidence of a laboratory procedure for blood lead
                   analysis because that procedure is generally billed under a unique code
                   and is easily identified. Provider services for drawing the blood sample, in
                   contrast, could be bundled with other outpatient services and may not be
                   readily identified. We credited a child as having received a blood lead test
                   if a claim was made within 6 months of the child’s first or second birthday.
                   We checked with each participating state Medicaid program the particular
                   coding and process they used for recording the state’s data.

                   Other than these quality control checks, we did not independently verify
                   the data in the State Medicaid Research Files because (1) HCFA’s process
                   for modifying the data includes quality control phases in which the data
                   are analyzed with a number of statistical tools and crosswalks and (2) the
                   data originated at the state level and the benefit of tracking them back to
                   their source would not have outweighed the considerable cost and staff
                   resources that this would have entailed. These data represent the most
                   current and complete data available on state-level billing within Medicaid
                   fee-for-service programs.


                   Our analysis shows that the rate at which 15 states’ Medicaid
Analysis Results   fee-for-service programs provided blood lead screening for 1- and
                   2-year-old children in Medicaid was about 21 percent during 1994 and
                   1995. Rates for the 15 states ranged from less than 1 percent in Washington
                   to about 46 percent in Alabama.86 Table II.1 gives details of our results.




                   86
                    We contacted both states’ lead registries to determine whether these rates were consistent with the
                   data they collected. Both health departments confirmed that these screening rates were consistent
                   with those reported in their states. For example, less than 1 percent of all children in Washington were
                   screened for lead poisoning in 1996.



                   Page 74                                                            GAO/HEHS-99-18 Lead Poisoning
                                           Appendix II
                                           Methodology and Results of Medicaid Billing
                                           Data Analysis




Table II.1: Billing Rates of 15 State Medicaid Programs for Laboratory Tests for Blood Lead Levels in 1994-95
                                           Age 1                            Age 2                             Total
                               Cohort  Number   Percent            Cohort  Number   Percent               Cohort  Number   Percent
State                            size screened screened              size screened screened                 size screened screened
Alabama                        16,800       8,331          50       15,073        6,210            41      31,873       14,541            46
Arkansas                        5,200       1,556          30        5,606        2,001            36      10,806        3,557            33
Colorado                        7,241          881         12        6,150          415             7      13,391        1,296            10
Delaware                        1,600          612         38        1,495          324            22       3,095          936            30
        a
Florida                        14,275       2,658          19       12,570        1,884            15      26,845        4,542            17
Kentucky                       14,230       1,340            9      13,534        1,122             8      27,764        2,462             9
Mississippi                    12,134       3,615          30       11,330        3,019            27      23,464        6,634            28
Missouri                       20,947       4,216          20       19,329        3,246            17      40,276        7,462            19
Montana                         1,809           44           2       1,762            61            3       3,571          105             3
New Jersey                     14,585       6,144          42       14,759        5,424            37      29,344       11,568            39
North Dakota                    1,268           34           3       1,312            41            3       2,580            75            3
Pennsylvaniaa                  16,729       2,245          13       14,529        1,717            12      31,258        3,962            13
Vermont                         1,267          120           9       1,309            78            6       2,576          198             8
Washington                     17,331           61         0.4      15,251            22          0.1      32,582            83           0.3
Wisconsin                       4,120       1,410          34        5,418        1,610            30       9,538        3,020            32
Total                         149,536      33,272          22     139,427        27,174            19     288,963       60,440            21
                                           a
                                            Excludes data from Pinellas County, Florida, and Philadelphia County, Pennsylvania, because
                                           laboratories in these counties do not send individual billing data to HCFA.




                                           Page 75                                                        GAO/HEHS-99-18 Lead Poisoning
Appendix III

Methodology for Our Questionnaire to
Medicaid Directors

               We developed the questionnaire we sent to Medicaid directors to identify
               state Medicaid policies and practices for screening and treating children
               for elevated blood lead levels. We sought information on a number of
               items including (1) the program’s coverage of services for treating children
               with elevated blood lead levels, (2) the number of children in Medicaid
               aged 5 and younger in managed care arrangements, (3) the availability of
               data on screening and the prevalence of elevated blood lead levels in
               children in Medicaid, (4) monitoring mechanisms for ensuring that
               children in Medicaid are screened and treated once they have been
               identified as having elevated blood lead levels, and (5) documentation of
               EPSDT policies and other relevant information, such as formal agreements
               or memorandums of understandings with other agencies regarding
               screening or treatment of children for elevated blood lead levels.

               We pretested the questionnaire with officials from several Medicaid
               agencies and obtained and incorporated comments from several reviewers
               knowledgeable about Medicaid or lead poisoning prevention programs.
               These reviewers included officials from HCFA, CDC’s Lead Poisoning
               Prevention Branch, and representatives of the American Public Welfare
               Association, the Academy of State Health Policy, and the Alliance to End
               Childhood Lead Poisoning.

               We sent the final questionnaire to the Medicaid directors in 50 states and
               the District of Columbia in November 1997. All Medicaid directors or their
               representatives responded.




               Page 76                                          GAO/HEHS-99-18 Lead Poisoning
Appendix IV

Federal Guidance and Policies for Screening
and Treating Children for Elevated Blood
Lead Levels
                                    A number of federal health agencies play critical roles in providing
                                    national lead poisoning prevention guidance and policies. CDC issues
                                    recommendations for screening young children for elevated blood lead
                                    levels. HCFA, which administers Medicaid, establishes requirements for the
                                    provision of screening services for children covered by Medicaid as part of
                                    its EPSDT program. HRSA, which provides grants to health centers to provide
                                    health services in medically underserved areas—including services to
                                    children in Medicaid and uninsured children—establishes policies for
                                    children’s health care services. Table IV.1 shows the specific guidelines
                                    and policies for screening established by these federal agencies.

Table IV.1: Federal Guidance and
Policies for Blood Lead Screening                                                                 Screening
                                                    Risk assessment            High risk                  Low risk
                                    1991 CDC        Assess the child’s risk    At a minimum, an           At a minimum, an
                                    guidelines      for high-dose              initial test at 6 months   initial test at 12
                                                    exposure at 6 months       and every 6 months         months and
                                                    and each regular           thereafter (until two      rescreening at 24
                                                    office visit thereafter.   consecutive tests are      months if possible.
                                                                               lower than 10 µg/dl or
                                                                               three are less than 15
                                                                               µg/dl, when testing
                                                                               can be reduced to
                                                                               annually). At 36-72
                                                                               months, any child at
                                                                               high risk not
                                                                               previously tested
                                                                               should be tested.
                                    1997 CDC        CDC recommends
                                    guidelines      that state health
                                                    officials develop
                                                    screening guidelines.
                                                    In their absence, CDC
                                                    recommends
                                                    screening all children
                                                    at 1 and 2 years and
                                                    36-72 months who
                                                    have not been
                                                    previously screened.
                                                    CDC recommends
                                                    that, in general,
                                                    children who receive
                                                    Medicaid benefits
                                                    should be screened
                                                    unless reliable,
                                                    representative blood
                                                    lead level data
                                                    demonstrate the
                                                    absence of lead
                                                    exposure.
                                                                                                                     (continued)



                                    Page 77                                                   GAO/HEHS-99-18 Lead Poisoning
Appendix IV
Federal Guidance and Policies for Screening
and Treating Children for Elevated Blood
Lead Levels




                                                                    Screening
                     Risk assessment            High risk                  Low risk
1994 HRSA            Assessment of risk         An initial test at 6       An initial test at 12
Bureau of            should be a part of        months or when the         months. Each center
Primary Health       each well-child visit      child is determined to     should develop a
Care policy for      and other pediatric        be at high risk. Each      protocol for
health centers       visits as appropriate,     center should              anticipatory
                     from 6 months to 6         develop a protocol for     guidance, risk
                     years.                     anticipatory               assessment, lead
                                                guidance, risk             testing, and follow-up
                                                assessment, lead           of abnormal results.
                                                testing, and follow-up
                                                of abnormal results.
1993 Medicaid        Beginning at 6             A test is required         A test at 12 and 24
manual               months and at each         when a child is            months. A child
                     visit thereafter, the      identified as being at     between 24 and 72
                     provider must assess       high risk, beginning at    months who has not
                     the child’s risk for       6 months. A test is        been tested must be
                     exposure, asking           required at every visit    tested immediately.
                     specified questions at     prescribed in the
                     a minimum.                 EPSDT periodicity
                                                schedule through 72
                                                months, unless the
                                                child has already
                                                received a test within
                                                the last 6 months of
                                                the periodic visit.
1998 Medicaid        No risk assessment is A screening test must           A screening test must
manual               required.             be provided at 12 and           be provided at 12 and
                                           24 months. A child              24 months. A child
                                           between 36 and 72               between 36 and 72
                                           months who has not              months who has not
                                           received a screening            received a screening
                                           blood lead test must            blood lead test must
                                           be screened.                    be screened.

Ensuring that a child who has an elevated blood lead level receives the
services needed to lower the level involves many organizations other than
the child’s health care provider. The CDC guidelines state that
comprehensive services for a lead-poisoned child are best provided by a
team that includes the health care provider, care coordinator,
community-health nurse or nurse adviser, environmental specialist, social
services liaison, and housing specialist. Drug remedies are generally not
recommended except in chelation therapy for children who have blood
lead levels of 45 µg/dl or higher.87 Table IV.2 summarizes federal guidelines
and policies for retesting to ensure that blood lead levels decline.


87
  Ongoing research by the National Institute of Environmental Health Sciences is assessing the
treatment of children exposed to lead—specifically, home cleanup, nutritional supplementation, and
chelation therapy for children whose blood lead levels are between 20 and 44 µg/dl.



Page 78                                                         GAO/HEHS-99-18 Lead Poisoning
                                    Appendix IV
                                    Federal Guidance and Policies for Screening
                                    and Treating Children for Elevated Blood
                                    Lead Levels




Table IV.2: Federal Guidance and
Policies for Blood Lead Treatment                             Recommendation
                                    1991 CDC guidelines       At 10 µg/dl or higher, retesting at least at 3- or 4-month intervals
                                                              until blood lead levels have declined. At 20 µg/dl or higher, CDC
                                                              recommends clinical management—clinical evaluation for
                                                              complications of lead poisoning, family lead education and
                                                              referrals, chelation therapy if appropriate, and follow-up testing at
                                                              appropriate intervals. At both levels, children should receive
                                                              environmental investigation, coordination of care, and
                                                              lead-hazard control services.
                                    1997 CDC guidelines       At 10 µg/dl or higher, retesting at 2- to 3-month intervals until
                                                              blood lead levels have declined, lead hazards have been
                                                              removed, and there is no new exposure. At or above 20 µg/dl,
                                                              retesting should be even more frequent. Recommendations for
                                                              clinical management are the same as in the 1991 guidelines.
                                    1994 HRSA Bureau of Each center should develop a protocol for anticipatory guidance,
                                    Primary Health Care risk assessment, lead testing, and follow-up of abnormal results.
                                    policy for health   All follow-up should be done in accordance with CDC guidelines.
                                    centers
                                    1993 Medicaid manual At 10 µg/dl or higher, providers are to use their professional
                                                         judgment with reference to CDC guidelines covering patient
                                                         management and treatment, including follow-up blood tests and
                                                         investigations to determine the source of lead when indicated.a
                                    1998 Medicaid manual Adds to the 1993 manual that determining the source of lead may
                                                         be reimbursable by Medicaid under certain circumstances but
                                                         that reimbursement is limited to a health professional’s time and
                                                         activities during an on-site investigation of a child’s home or
                                                         primary residence. The child must be diagnosed as having an
                                                         elevated blood lead level. Medicaid reimbursement is not
                                                         available for any testing of substances such as water and paint
                                                         that are sent to a laboratory for analysis.
                                    a
                                     The manual is silent on expectations for covering treatment services but policy memorandums to
                                    regional offices state that investigations are integral to management and treatment and may be
                                    reimbursable under Medicaid as a rehabilitative services benefit.




                                    Page 79                                                        GAO/HEHS-99-18 Lead Poisoning
Appendix V

Methodology and Results of Screening of
Children at Health Centers

                       To better understand the extent to which health centers screened children
Sampling               for elevated blood lead levels, we visited several high-risk centers and
Methodology            reviewed a sample of medical records. We considered a center to be at
                       high risk if it was in an area with a large number of old (pre-1950) homes
                       and saw a large number of children who were enrolled in Medicaid. We
                       used 1990 census data to determine the number of old homes in the same
                       zip code as a health center.88 We used HRSA’s 1996 Unified Data System
                       Report data to determine the number of children who were younger than 5
                       and enrolled in Medicaid and seen at the center. For each of 10 HHS
                       regions, we weighted these two parameters and ranked the health centers
                       by their overall score. We then judgmentally selected one center from the
                       five highest-risk centers in regions 1, 2, 3, 4, 6, 9, and 10. We limited our
                       review to facilities in these seven regions because of time and resource
                       constraints. We chose these locations to ensure that our samples were
                       geographically diverse.

                       At six of the seven centers, we looked at the medical records for a random
                       sample of about 15 children who were born between January 1, 1994, and
                       June 30, 1995, and seen in 1996. These children were 1 or 2 years old in
                       1996. In considering whether children were appropriately screened, we
                       presumed that as their regular provider, the health centers should have
                       tested them. For this reason, we reviewed only medical records for
                       children who had been seen at least once for a well-child (or preventive
                       health care) visit or at least three times for acute care visits. We did not
                       review any medical files at the community health center we visited in
                       Everett, Washington. Officials there told us that they did not have records
                       of screening any children in 1996 and had screened only three children in
                       1997. We confirmed with the Washington health department’s lead registry
                       that this center had screened three children during 1993-98.


                       At each health center, we reviewed health center protocols for screening
Analysis Methodology   children for elevated blood lead levels, when available, and discussed the
                       protocols with the health center’s medical director and other staff. We
                       discussed with health center management and clinical officials the barriers
                       they faced in ensuring that children seen at the health center were
                       screened.

                       From each medical record we reviewed, we recorded data on each visit to
                       the health center, including all dates representing screening blood tests.

                       88
                         Wessex, Inc., publishes Pro/Filer, a data software combination product that allows users to access
                       demographics from the 1990 U.S. census. We used pre-1950 housing age data because that was the
                       closest breakdown to the pre-1946 cutoff used in our NHANES analysis.



                       Page 80                                                           GAO/HEHS-99-18 Lead Poisoning
                                      Appendix V
                                      Methodology and Results of Screening of
                                      Children at Health Centers




                                      We considered that a child had been screened if the medical record
                                      showed evidence of one blood lead test at some time in the child’s history
                                      with the health center. We considered a screen to be in line with CDC
                                      recommendations and HCFA policy for screening at 1 year and 2 years if the
                                      child was screened within 6 months of his or her first and second birthday.
                                      If a child younger than 6 months was screened, we also considered this to
                                      be a screen at 1 year of age. We considered a screen to be on time if a child
                                      was screened at age 1 year and 2 (when presenting for care at those ages).
                                      We recorded evidence of a provider’s order for a laboratory test as well as
                                      evidence of whether the laboratory test was actually performed in order to
                                      assess whether ordered tests were completed.

                                      We conducted our medical records reviews at health centers from October
                                      1997 through March 1998 in accordance with generally accepted
                                      government auditing standards.


                                      Table IV.1 shows the results of our analysis. While we generally reviewed
Analysis Results                      about 15 files at each location, at one we reviewed only 14 files and at
                                      another we reviewed 16 files. This slight variance in the sample size has no
                                      effect on the analysis because we are not projecting the results to a larger
                                      universe.

Table V.1: Screening for 1- and
2-Year-Old Children at Seven Health                                         Percent  Percent  Percent     Percent
Centers in 1996                                                     Sample     ever screened screened screened on
                                      Health center site             cases screened  at age 1 at age 2       time
                                      Atlanta, Ga.                       14      64       42         60           38
                                      Brooklyn, N.Y.                     15      93       80         64           60
                                      Everett, Wash.                       0      0        0          0            0
                                      New Bedford, Mass.                 15     100      100         85           85
                                      Philadelphia, Pa.                  15     100      100         85           87
                                      San Antonio, Tex.                  16      50       62         21           27
                                      Watsonville, Calif.                15      80       46         54           27




                                      Page 81                                           GAO/HEHS-99-18 Lead Poisoning
Appendix VI

Methodology and Results for Follow-Up
Testing of Children With Elevated Blood
Lead Levels Seen at Health Centers
                       To better understand the extent to which health centers provided
Sampling               follow-up testing to children they found to have elevated blood lead levels,
Methodology            we visited several high-risk health centers and reviewed a sample of the
                       medical records of these children. We considered a center to be at high
                       risk if it was located in an area with a large number of old
                       (pre-1950) homes and saw a large number of children who were enrolled
                       in Medicaid. We used 1990 census data to determine the number of old
                       homes in the same zip code as a health center.89 We used HRSA’s 1996
                       Unified Data System Report data to determine the number of children who
                       were younger than 5 and enrolled in Medicaid and seen at the center. For
                       each of the 10 HHS regions, we weighted these two parameters and ranked
                       the health centers by their overall score. We then judgmentally selected
                       one center from the five highest-risk centers in regions 1, 2, 3, 4, 6, 9, and
                       10. We limited our review to facilities in these seven regions because of
                       time and resource constraints. We chose these locations to ensure that our
                       samples were geographically diverse.

                       At six of the seven centers, we looked at medical records for a random
                       sample of about 15 children who were found to have blood lead levels of
                       10 µg/dl or higher in 1996. We did not review any medical records at the
                       health center in Everett, Washington. Officials there told us that they did
                       not have records of screening any children in 1996 and, therefore, had not
                       identified any children with elevated blood lead levels.


                       At each health center, we reviewed health center protocols for screening
Analysis Methodology   children for elevated blood lead levels, when available, and discussed the
                       protocols with the health center’s medical director and other staff. We
                       discussed with health center management and clinical officials the barriers
                       they faced in ensuring that children seen at the health center received
                       follow-up testing and other services needed to lower their levels.

                       From each medical record we reviewed, we recorded data on each visit to
                       the health center. We recorded all dates where records showed that a
                       child’s provider ordered a follow-up test, whether laboratory test results
                       were present showing that the ordered test had been completed, and the
                       blood lead levels. For each blood lead test result at 10 µg/dl or higher in
                       the child’s medical record for 1996, we determined the time until a
                       follow-up test was done and the number of missed opportunities to follow
                       up (when the child was given care but was not provided a follow-up blood
                       lead test). For analysis purposes, we considered each blood test

                       89
                         See the preceding footnote.



                       Page 82                                           GAO/HEHS-99-18 Lead Poisoning
                   Appendix VI
                   Methodology and Results for Follow-Up
                   Testing of Children With Elevated Blood
                   Lead Levels Seen at Health Centers




                   subsequent to one finding an elevated blood lead level to be a follow-up
                   test, regardless of the time between tests.

                   For each elevated blood lead level, we determined whether a follow-up
                   test was done on time, using criteria based on CDC’s 1991 lead screening
                   and treatment guidelines.90 The specific criteria we used follow:

                   1. For children younger than 3, a follow-up should be done in 3 to 4
                   months (120 days or less).

                   2. For children 3 or older with a blood lead level equal to or greater than 15
                   µg/dl, a follow-up should be done in 3 to 4 months.

                   3. For children 3 or older with a blood lead level less than 15 µg/dl but a
                   former blood lead level equal to or greater than 15 µg/dl, a follow-up
                   should be done in 12 months.

                   4. Children aged 3 or older who have never had a blood lead level equal to
                   or greater than 15 µg/dl do not need a follow-up.

                   We defined a missed opportunity as any visit to the center 90 days after the
                   elevated blood lead level was found for children meeting criteria 1 and 2
                   above or 270 days later for children meeting criterion 3. Children with no
                   follow-up and no missed opportunities were children who did not return to
                   the center.

                   We conducted our medical records reviews at health centers from October
                   1997 through March 1998 in accordance with generally accepted
                   government auditing standards.


                   Although our samples were randomly selected, it is not possible to project
Analysis Results   from our analysis. First, the sites were judgmentally selected from
                   high-risk locations and thus are not representative of all health centers.
                   Second, our analysis was not weighted to ensure that the samples
                   reflected the population of children visiting the health centers. Table VI.1
                   shows our results.




                   90
                     CDC’s 1997 guidelines shortened the recommended time between follow-up tests.



                   Page 83                                                        GAO/HEHS-99-18 Lead Poisoning
                                         Appendix VI
                                         Methodology and Results for Follow-Up
                                         Testing of Children With Elevated Blood
                                         Lead Levels Seen at Health Centers




Table VI.1: Follow-Up Testing Provided
to Children Whose Elevated Blood                                                          Elevated
                                                                             Sample     blood level   Follow-up not on time
Lead Levels Were Identified by Seven
Health Centers in 1996                   Health center site                   cases           tests     Number        Percent
                                         Atlanta, Ga.                              26           29            19              66
                                         Brooklyn, N.Y.                            15           27             5              19
                                         Everett, Wash.                            0             0             0               0
                                         New Bedford, Mass.                        19           35            19              54
                                         Philadelphia, Pa.                         15           28            11              39
                                         San Antonio, Tex.                         16           25            12              48
                                         Watsonville, Calif.                       11           14             4              29




                                         Page 84                                                 GAO/HEHS-99-18 Lead Poisoning
Appendix VII

State Requirements Supporting CDC
Grantees’ Efforts to Ensure That Children
Are Screened and Provided Follow-Up
Services
               In 1988, the Congress passed section 317A of the Public Health Service
               Act, authorizing CDC to make grants aimed at preventing childhood lead
               poisoning. The legislation established program goals that included
               screening infants and children for lead and follow-up referrals for
               treatment and environmental intervention for those found to have elevated
               blood lead levels. Two types of grants are available: Childhood Lead
               Poisoning Prevention grants and Childhood Blood Lead Surveillance
               grants. The majority of CDC’s grant funding for childhood lead poisoning
               prevention—totaling $27 million in fiscal year 1998—is directed toward
               prevention grants to (1) ensure that children are screened for lead
               poisoning, (2) ensure that children who have elevated blood lead levels
               receive timely and appropriate follow-up, (3) provide education about
               childhood lead poisoning and prevention, and (4) as of the fiscal year 1998
               grant cycle, capture data on screening and follow-up activities for
               surveillance purposes. The surveillance grants are aimed as of the fiscal
               year 1998 grant cycle at developing statewide surveillance systems for
               capturing data on screening and follow-up activities and monitoring
               progress. Both grant types require a commitment to screening and
               reporting on elevated blood lead levels. In 1998, 43 state and local health
               departments received prevention grants and 10 received surveillance
               grants.


               To determine what CDC-supported programs were doing to ensure that
Methodology    children were screened for elevated blood lead levels and, once identified,
               treated appropriately, we met with officials from six state and local
               Childhood Lead Poisoning Prevention and Childhood Blood Lead
               Surveillance programs. The prevention programs were managed by
               California and Massachusetts and New York and Philadelphia, and the
               surveillance programs were run by Washington and Texas.91 We chose
               these programs because they were geographically close to the health
               centers that we visited. Although we did not meet with officials from the
               Georgia program, which was not receiving CDC grant funding at the time of
               our review, we did discuss the program with an official on the telephone.
               For each program, we obtained the most recent CDC grant application;
               state legislation or procedures addressing lead poisoning screening,
               reporting, and follow-up requirements; quarterly reports to CDC; available
               measures or estimates of screening and prevalence rates; and information
               about program activities.



               91
                Philadelphia did not receive a CDC grant but received CDC funding through a CDC grant to
               Pennsylvania.



               Page 85                                                        GAO/HEHS-99-18 Lead Poisoning
                           Appendix VII
                           State Requirements Supporting CDC
                           Grantees’ Efforts to Ensure That Children
                           Are Screened and Provided Follow-Up
                           Services




                           The legal infrastructure for lead poisoning prevention efforts at the state
State and Local            and local levels can significantly affect the ability of health departments to
Infrastructures for        ensure the screening, reporting, and follow-up of children who have
Ensuring Screening         elevated blood lead levels. All the states and cities we contacted had some
                           type of requirement for laboratories to report lead test results, but the
and Treatment Vary         reportable levels differed, affecting the usefulness of the data for
Widely                     identifying screening rates and areas with children at higher risk. Two of
                           the seven programs we reviewed were in states that had requirements for
                           screening, and those programs reported higher screening rates than the
                           others we visited. More than half of the programs we contacted were in
                           states lacking specific laws to enforce the abatement of identified lead
                           hazards.


Background on CDC’s 1997   Before 1997, CDC recommended that virtually all children aged 1 through 5
Screening                  be screened for elevated blood lead levels. In November 1997, CDC
Recommendations            acknowledged the generally low rates of screening and the declining
                           prevalence of elevated blood lead levels and recommended that state
                           public health officials develop statewide plans for childhood blood lead
                           screening. CDC recommended that statewide plans contain if necessary
                           different recommendations for screening within particular areas of a state
                           and that targeted screening be based on data that are representative of the
                           populations within those divisions. CDC set the following criteria for the
                           states to use in evaluating the usefulness of blood lead level data and
                           developing targeted screening plans: (1) laboratory data are available for
                           children who have been screened, are of good quality, and are available for
                           individual children; (2) demographic, socioeconomic, and geographic data
                           are available for individual children; (3) screening data are representative
                           of the pediatric population of the jurisdiction and are available for a
                           sample that is large enough to allow a valid estimate of prevalence.

                           Policies based on such data are ideal because, while CDC’s most recent
                           estimate indicates that 4.4 percent of children aged 1 through 5 have
                           elevated blood lead levels, their prevalence can vary significantly
                           depending on local conditions. Lacking representative prevalence data,
                           states and localities must rely on other sources such as census data to
                           identify children who have universal risk factors. Such factors include
                           living in older houses or in low-income families, and a significant number
                           of young children have at least one risk factor.




                           Page 86                                           GAO/HEHS-99-18 Lead Poisoning
                         Appendix VII
                         State Requirements Supporting CDC
                         Grantees’ Efforts to Ensure That Children
                         Are Screened and Provided Follow-Up
                         Services




Provider Screening and   Some states require providers to screen children and have mechanisms to
Laboratory Reporting     ensure that screening occurs, such as requiring proof of screening as a
Requirements             condition for enrolling in daycare or school. CDC’s 1998 assessment found
                         that 3 of 20 states receiving CDC grants mandated screening all children
                         aged 6 or younger. New York and Massachusetts, two of the seven
                         CDC-supported programs that we contacted, had requirements that
                         providers screen for blood lead levels. They also had the highest reported
                         screening rates of the programs we visited.92 Table VII.1 details differences
                         in state screening and reporting policies and known or estimated
                         screening and prevalence rates.

                         Many states and jurisdictions have laboratory reporting requirements to
                         ensure that blood lead test results are reported. However, not all require
                         the reporting of all (elevated and nonelevated) blood lead test results,
                         limiting the usefulness of the data for targeting screening and surveillance
                         purposes. Among the states and localities we contacted, universal
                         reporting—the reporting of all blood lead level tests regardless of
                         result—was required in Massachusetts, New York, and Washington. While
                         Washington had universal reporting requirements and could calculate
                         screening rates, less than 1 percent of the children there had been
                         screened, preventing the state from accurately determining local
                         prevalence levels. California, Georgia, Pennsylvania, and Texas required
                         that only blood lead levels above a specific level be reported, hindering
                         states and localities from reliably calculating their screening rates and
                         prevalence levels. Instead, they relied on estimating general screening
                         rates for population segments—for example, by reviewing Medicaid billing
                         data.

                         CDC-provided   information also shows how the states’ requirements differ.
                         A 1998 CDC assessment of selected grantees’ laboratory reporting
                         requirements found that, of 20 states contacted, 10 had legal requirements
                         for laboratories to report all blood lead test results, 4 required reporting
                         results of 10 µg/dl or higher, 1 required reporting results of 11 µg/dl or
                         higher, 2 required reporting results of 15 µg/dl or higher, 1 required
                         reporting results of 20 µg/dl or higher, 1 required reporting results of 25
                         µg/dl or higher, and 1 had no reporting requirements.93




                         92
                          Although other states lacked reliable data on the screening rates, most had estimated rates based on
                         other available information.
                         93
                           CDC collected this information in its effort to report on state lead surveillance activities.



                         Page 87                                                               GAO/HEHS-99-18 Lead Poisoning
                                     Appendix VII
                                     State Requirements Supporting CDC
                                     Grantees’ Efforts to Ensure That Children
                                     Are Screened and Provided Follow-Up
                                     Services




Table VII.1: 1996 Screening and
Reporting Policies and Reported                                           Health
Screening Rates and Prevalence for                                        department
Sites We Visited                                           Screening      estimates of
                                                           of certain     screening        Level at which      Reported
                                                           children       rates for        reporting is        prevalence of
                                                           required by    children aged    required by         elevated blood
                                     Site                  law            1 through 5      law (µg/dl)a        lead levels
                                     California            Nob            Unknown          25                  Unknown
                                                                          (estimated 22
                                                                          percent among
                                                                          children in
                                                                          Medicaid in
                                                                          1994)
                                     Georgia               No             Unknown          10                  Unknown
                                                                c
                                     Massachusetts         Yes            54 percent       0                   3.7 percent
                                     New Yorkd             Yese           44 percent for    0                  5.46 percent in
                                                                          1- and                               1995
                                                                          2-year-olds and
                                                                          42 percent for
                                                                          3- to 5-year-olds
                                     Pennsylvaniad         No             Unknown          25f                 Unknown
                                                                          (estimated 30
                                                                          percent in
                                                                          Philadelphia)
                                     Texas                 No             Unknown          10                  Unknown
                                                                          (estimated 33
                                                                          percent among
                                                                          children in
                                                                          Medicaid and
                                                                          11 percent for
                                                                          all children)
                                     Washington            No             Less than 1      0                   Unknowng
                                                                          percent

                                                                                                       (Table notes on next page)




                                     Page 88                                                    GAO/HEHS-99-18 Lead Poisoning
                             Appendix VII
                             State Requirements Supporting CDC
                             Grantees’ Efforts to Ensure That Children
                             Are Screened and Provided Follow-Up
                             Services




                             a
                              California: Cal. Health and Safety Code, Sec. 124130 (Deering 1997); Georgia: Rules of the
                             Department of Human Resources, Ch. 290-5-3; Massachusetts: Mass. Regs. Code tit. 105, §
                             460.070 (1995); New York: N.Y. Public Health, ch. 45. article 13, title Y § 1370-e(3); Pennsylvania:
                             28 Pa. Code, § 27.4 (1993); Texas: 25 Tex. Admin. Code § 37.334 (1998); Washington: Wash.
                             Admin. Code § 246-100-042 (1997). The states verified these legal references in November 1998.
                             b
                              Pursuant to a settlement agreement in federal district court, California adopted a blood lead
                             screening protocol for its Child Health and Disability Prevention program based on CDC
                             guidelines. Under the protocol, eligible children are to be screened at 1 and 2 years or between
                             25 and 72 months if not already screened and whenever a risk assessment identifies them as
                             being at high risk.
                             c
                              All children at approximately 1, 2, 3, and 4 years, with more frequent screening for children
                             determined to be at high risk for lead poisoning after an assessment based on CDC guidelines.
                             Blood lead screens are required for kindergarten enrollment.
                             d
                              Screening and prevalence data for New York and Pennsylvania are those reported for the cities
                             of New York and Philadelphia.
                             e
                              All children at around 1 and 2 years, with screening of older children up to age 6 who are
                             determined by a risk assessment to be at high risk. Blood lead screens are required for certified
                             daycare and preschool enrollment.
                             f
                              According to city health officials, blood lead levels equal to or higher than 15 µg/dl are required
                             to be reported in Philadelphia.
                             g
                              While reporting all blood lead test results is required, data are not considered to be
                             representative since less than 1 percent of children have been screened.




Requirements for             One barrier to screening that officials cited was the lack of authority or
Addressing Identified Lead   resources to address the sources of blood lead level conditions, often the
Hazards                      lead hazards in housing. The National Conference of State Legislatures in
                             1997 compiled some information on residential abatement standards by
                             state and reported that of 31 states for which information was available,
                             only 11 required residential abatements. We found major differences in the
                             authority of state and local officials to ensure that identified lead hazards
                             are addressed, as shown in table VII.2.




                             Page 89                                                            GAO/HEHS-99-18 Lead Poisoning
                                         Appendix VII
                                         State Requirements Supporting CDC
                                         Grantees’ Efforts to Ensure That Children
                                         Are Screened and Provided Follow-Up
                                         Services




Table VII.2: Seven Sites’ Requirements
for Addressing Lead Hazards in           Site                         Requirement
Housing                                  California                   Officials indicated that lead hazards could be considered a
                                                                      “nuisance” under the Health and Safety Code and that the health
                                                                      department could order an abatement of such nuisances under
                                                                      penalty of law.a
                                         Georgia                      No abatement laws.
                                         Massachusetts                Responsible parties are required to abate lead hazards.
                                                                      Residences occupied by children who have blood lead levels of
                                                                      25 µg/dl or higher must have environmental investigations. If an
                                                                      occupant refuses admission, a search warrant may be obtained.
                                                                      Owners of dwellings containing dangerous levels of lead in
                                                                      accessible structural material are required to obtain certification
                                                                      of full compliance or interim control where children younger than
                                                                      6 reside or the owner receives an order to “delead.” Owners may
                                                                      be liable for all damages to children caused by failure to comply
                                                                      with certain inspection and abatement requirements.
                                         New York City                Responsible parties can be ordered to do lead abatement work.b
                                                                      If owners or other persons having legal responsibility fail to
                                                                      comply with an abatement order within 5 days, the city may
                                                                      contract for abatement at the owners’ expense.c
                                         Philadelphia                 Owners of residential property are required to eliminate lead
                                                                      hazards caused by paint on threat of having their rental licenses
                                                                      revoked.d However, since only about 30 percent of landlords are
                                                                      licensed, according to city officials, such threats are not very
                                                                      effective.
                                         Texas                        No abatement laws.
                                         Washington                   No abatement laws.
                                         a
                                         We did not address the extent to which other states had similar “nuisance” laws.
                                         b
                                             Mass. Gen. Laws, ch. 111, §§ 194, 199 (1994); Mass. Regs. code tit. 105, §§ 460.020, 460.100.
                                         c
                                         N.Y.C. Health Code, § 173.13.
                                         d
                                             Philadelphia Health Code, § 6-403(5).




                                         Page 90                                                           GAO/HEHS-99-18 Lead Poisoning
Appendix VIII

Comments From HHS




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                  Comments From HHS




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                      Comments From HHS




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                    Appendix VIII
                    Comments From HHS




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                    Page 102            GAO/HEHS-99-18 Lead Poisoning
                  Appendix VIII
                  Comments From HHS




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                  Appendix VIII
                  Comments From HHS




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                  Page 104            GAO/HEHS-99-18 Lead Poisoning
Appendix IX

GAO Contacts and Staff Acknowledgements


                  Frank Pasquier, Assistant Director (206) 287-4861
GAO Contacts      Katherine Iritani, Evaluator-in-Charge (206) 287-4820


                  In addition to the persons named above, the following persons made
Staff             important contributions to this report: Matthew Byer conducted the
Acknowledgments   Medicaid survey, Timothy Clouse analyzed the NHANES data, Evan Stoll, Jr.,
                  analyzed Medicaid billing data and health center samples, Patricia Yamane
                  oversaw fieldwork at health centers and work related to treatment issues,
                  Stanley Stenersen guided the message development and report writing,
                  George Bogart served as attorney adviser, Susan Lawes assisted with the
                  Medicaid survey methodology, and Molly Laster compiled information on
                  state screening and reporting requirements. Marsha Lillie-Blanton
                  provided technical assistance on this assignment.




(108334)          Page 105                                        GAO/HEHS-99-18 Lead Poisoning
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