oversight

Preventing Mental Retardation: More Can Be Done

Published by the Government Accountability Office on 1977-10-03.

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

    r:REPORT TO THE CONG.RESS::]


     BY-THE COMPTROLL_ER GENERAL
     OF THE UNITED STATES     VO



     /Preventing Mental Retardation--
    ;;:,More Can Be Done




    HRD-77-37               OCTOBER 3, 1977




a
              COMPTROLLER GENERAL OF THE UNITED STATES
                         WASHINGTON, D.C.   20548



                                                          1
B-164031(5)



To the President of the Senate and the
Speaker of the House of Representatives

     This report discusses the implementation of a
Presidential goal to reduce by half the incidence of mental
retardation by the end of this century.  It discusses the
need to designate a specific group within the Department
of Health, Education, and Welfare with responsibility for
implementing and monitoring a national prevention strategy,
clarifyipg agency roles, and determining which and how the
Department's programs can best assist in the effort. The
report also discusses what else can be done to reduce
mental retardation resulting from selected causes.

     Our review was made to determine what progress was be-
ing made in reducing the incidence of mental retardation and
to determine what else could be done. We made our review
pursuant to the Budget and Accounting Act, 1921 (31 U.S.C. 53),
and the Accounting and Auditing Act of 1950 (31 U.S.C. 67).

     We are sending copies of this report to the Director,
Office of Management and Budget, and the Secretary of
Health, Education, and Welfare.




                                   Comptroller General
                                   of the United States
 COMPT~OLLER GENERAL'S                 PREVENTING MENTAL RETARDATION--
 REPORT TO THE CONGRESS                MORE CAN BE DONE


             D I G E S T

             In November 1971 the President established a
             national goal:  to reduce by half the in-
             cidence of mental retardation by the end of
             the century. Despite this goal:

             --No agency of the Department of Health,
               Education, and Welfare (HEW) has been
               made responsible for seeing that the goal
               is put into practice, coordinating efforts,
               clarifying agency roles and resource com-
               mitments, or measuring progress in meeting
               the goal.

             --Prevention of mental retardation has not
               been designated an objective by the De-
               partment's agencies responsible for pre-
               vention.

             --Systems have not been established or
               methods developed to assess progress in
               achieving the goal.  (See ch. 2.)

             Many authorities believe that about 6 mil-
             lion Americans are retarded and as many
             as 4 million of the children expected to
             be born by the year 2000 will be mentally
             retarded.

             HEW estimates that mental retardation costs
             the Nation between $6.5 and $9 billion
             annually in care, treatment, and lost produc-
             tivity. HEW alone spent over $1.7 billion
             on the mentally retarded in fiscal year 1976.

             Of the many causes of mental retardation
             which have been identified, GAO selected a
             few for which preventive techniques are
             available to determine what else can be
             done. Many causes of retardation also have
             other ill effects. Thus, if the incidence
             of retardation is reduced, these problems
             may also be prevented, possibly saving lives

Tear Sheet. Upon removal, the report
cover date should be noted hereon.
                                       i                   HRD-77-37
and avoiding human suffering.   Following are
the causes GAO selected.

METABOLIC DISORDERS

Mental reta~dation caused by inherited
metabolic disorders can often be prevented
if the aff·licted infant -is identified and
treated shortly after birth. Almost all
States· have programs for testing a blood
sample from newborn infants to detect
phenylketonuria. 1/ To reach all newborn
infants, improvem~nts are needed in many
of these programs. Also, only a limited
number of States are testing for six other
treatable metabolic disorders which can be
identified from the same blood sample.

Although these metabolic disorders are
not common, the monetary savings that re-
sult from avoided costs of caring for the
retarded greatly exceed the cost of screen-
ing all newborn infants and treating them.
Also, by using automated laboratory methods
applied on a large scale, tests for other
disorders can be made on the blood sample
drawn for phenylketonuria testing at little
or no additional cost.  (See ch. 3.)

PREMATURITY AND· LOW BIRTH WEIGHT

Comprehensive prenatal care can help prevent
low birth weight and prematurity, reducing
the incidence of mental retardation.  How-
ever, many women receive no prenatal care
and many more do not obtain prenatal care
until very late in pregnancy.

Health officials in each State visited said
additional prenatal care was needed.  How-
ever, in these States the-extent of the
unmet need for prenatal care, location of
those areas most in need, or the effect


l/A metabolic disorder caused by the in-
- ability to produce the enzyme which
  ordinarily metabolizes a particular
  protein in foods.
                                                J
                      ii
             prenatal care programs have had on reducing
             mental retardation have not been sufficiently
             analyzed.

             HEW has not evaluated State programs to as-
             sess how they affect the population served
             or to make sure that resources are being
             used most effectively.  (See ch. 4.)

             CHROMOSOME ABNORMALITIES

             Chromosome abnormalities are estimated to
             account for about 16 percent of the clinic-
             ally caused cases of mental retardation.
             Down's syndrome, one of the commonest of
             such abnormalities, appears in about 5,000
             births each year and, although current
             information is not available, it has ac-
             counted for 15 to 20 percent of the insti-
             tutionalized mentally retarded.

             Treatment of chromosome abnormalities is
             limited; thus, medical genetics concen-
             trates on preventing retardation through
             genetic counseling and testing.  However,
             only a small portion of those who could
             benefit from these services receive them.
             Neither HEW nor the States attempted to
             find out if persons needing the service
             are screened or served. Geneticists inter-
             viewed generally thought that a dispropor-
             tionately small number of those who obtain
             genetic services were from lower socio-
             economic groups.

             Federally funded family planning programs
             and possibly others could provide the
             needed outreach, identification, and serv-
             ices to lower income families.  Federally
             funded maternity and infant care projects
             were referring high-risk clients for genetic
             services; however, the family planning pro-
             grams in those States generally did not.

             RUBELLA AND MEASLES

             Mental retardation caused by rubella and
             measles can be prevented by aggressive
             vaccination programs.  But, because rubella

Tear Sheet
                                   iii
    and measles immunization levels are low,
    expanded efforts to immunize children
    and test women of childbearing age for
    susceptibility to rubella are needed.
    Better data is needed on immunity levels
    in local areas. Certain Federal programs--
    such as Medicaid's Early and Periodi~
    Screening, Diagnosis, and Treatment; Head
    Start; and family planning--could help im-
    prove surveillance data and raise immunity
    levels.  (See ch. 6.)

    LEAD POISONING
    HEW estimates that 600,000 children have
    elevated blood lead levels. More widespread
    screening is needed to determine the extent
    of the lead poisoning problem. A recent
    breakthrough in testing techniques· has made
    it possible to do more testing inexpensively.
    However, except in certain known high-risk
    areas, lead poisoning is not recognized as
l   a problem and screening is not routinely
    done. Reporting requirements· are inadequate
    to determine the extent of screening or the
    results in locales where screening is done.
    (See ch. 7.)
    Rh HEMOLYTIC DISEASE
    Mental retardation and other complications
    caused by Rh hemolytic disease can be pre-
    vented by identifying women with Rh negative
    blood types and providing them with im-
    munoglobulin when they bear Rh positive
    children or have abortions. Although the
    extent of the problem is not known, many
    women apparently are not receiving the
    immunoglobulin.
    States need comprehensive systems for test-
    ing pregnant women for Rh incompatability,
    reporting disease incidence, and reporting
    immunoglobulin utilization. Only five States
    had mechanisms for fully monitoring Rh
    hemolytic disease, only seven required
    either premarital or prenatal blood typing,

                           iv
             and only six had special programs for re-
             porting immunoglobulin use.  In lieu of
             State laws requiring such tests, the
             family planning programs could assist by
             including Rh blood typing as a routine
             part of family planning services.  (See
             ch. 8. )

             EARLY CHILDHOOD EXPERIENCES

             About 75 percent of the incidence of
             mental retardation is attributed to
             environmental conditions during early
             childhood. Although the relationship
             between poor living conditions and mental
             retardation is still not fully understood,
             many proj~cts are studying this.

             So far, this work has not been organized
             at either the Federal or State level.
             HEW agencies did not feel it was their
             responsibility to collect and evaluate
             the results of various programs directed
             at preventing psychosocial retardation or
             implementing those that are the most eff i-
             cient and effective.   As a result, little
             is known about the full extent of ongoing
             programs, the number of people being
             reached, or whether or not the techniques
             being used are effective and could be
             more widely applied.  (See ch~ 9.)

             RECOMMENDATIONS

             The Secretary of HEW should (1) designate
             a focal point in the Department to imple-
             ment a national prevention strategy, moni-
             tor and coordinate the efforts of the
             various HEW agencies and offices, and de-
             velop a method of determining the progress
             being made in reaching the goal and (2)
             make the prevention of mental retardation
             an objective in HEW's operational plan-
             ning system.  (Seep. 20.)

             This report makes several recommendations
             to the Secretary on actions that could be
             taken to increase HEW's efforts to reduce
             mental retardation caused by metabolic

Tear Sheet
                                   v
     disorders, insufficient prenatal care,
     genetic disorders, rubella and measles,
     lead poisoning, Rh hemolytic disease, and
     poor early childhood experiences.   {See
     pp. 33, 42, 50, 60, 70, 78, and 85.)

     AGENCY COMMENTS

     HEW generally agreeq with GAO's findings
     and recommendations and stated that the
     conclusions were valid and the recommenda-
     tions worthy of implementation.

     HEW told GAO that it would designate the
     Office of Assistant Secretary for Health
     as the focal point in the Department for
     mental retardation prevention.  It agreed
     that, whether or not its operational plan-
     ning system is continued, the relevant is-
     sues would be monitored by the agency track-
     ing system.  HEW also pointed out several
     actions it was taking in response to other
     GAO recommendations.  {See pp. 87 to 96.)




 I
.i



                          vi
                        C o n t e n t s



DIGEST                                               i

CHAPTER

   1      MENTAL RETARDATION AND ITS CAUSES          1
              Definition of mental retardation       2
              Causes of mental retardation           3
              Purpose and scope of review            5

   2      IMPROVEMENTS NEEDED IN HEW ADMINISTRA-
            TION OF THE PREVENTION EFFORT            8
              Federal involvement                    8
              Responsibility for implementing,
                monitoring, or coordinating a
                national prevention strategy has
                not been fixed                      11
              The President's goal has not been
                established as an HEW objective     15
              Lack of data to measure progress
                in meeting the goal                 17
              Conclusions                           20
              Recommendations                       20
              Agency comments and out evaluation    20

   3      EXPANDING NEWBORN SCREENING FOR META-
            BOLIC DISORDERS                         22
              Background                            22
              Available screening programs          23
              Coverage for PKU appears incomplete   24
              States generally don't screen for
                other disorders                     26
              Screening and treatment can be cost
                effective                           28
              Absence of HEW direction              32
              Conclusions                           33
              Recommendations                       33
              Agency comments and our evaluation    34

  4       IMPROVING PRENATAL CARE TO REDUCE PRE-
            MATURITY AND LOW BIRTH WEIGHT           35
            Inadequate prenatal care is linked
              to prematurity and mental retar-
              dation                                35
            How extensive is the problem?           37
                                                              (
CHAPTER

              Federal and State prenatal care pro-
                grams                                    38
              Extent of unmet need for prenatal
                care has not been determined             39
              Programs have not been evaluated as
                to their impact on preventing
                mental retardation                       41
              Conclusions                                42
              Recommendation                             42
              Agency comments                            43

   5      "IDENTIFYING PERSONS IN NEED OF GENETIC
             TESTING AND COUNSELING                      44
               Chromosome abnormalities are detect-
                 able                                    45
               Some high-risk individuals are iden-
                 tifiable                                46
               Current prevention efforts are limited    48
               Family planning programs could identify
                 high risk clients but generally do
                 not                                     49
               Conclusions                               51
               Recommendations                           51
               Agency comments and our evaluation        52

   6      IMPROVING IMMUNIZATION LEVELS FOR RUBELLA
            AND MEASLES                                  52
              Mental retardatioQ caused by measles
                and rubella can be prevented             53
              Better data is needed on immunity
                levels                                   54
              More aggressive vaccination efforts
                are needed                               56
              Federal programs could help                57
              Conclusions                                59
              Recommendations                            60
              Agency comments                            60

  7       INCREASED SCREENING TO DETECT LEAD POISON-
            ING                                          61
              Recognizing the problem                    61
              Sources of lead                            63
              Inexpensive screening techniques are
                available                                63
              Federal and State efforts have been
                minimal                                  65
CHAPTER

               Conclusions                                69
               Recommendations                            70
               Agency comments and our evaluation         70

   8       EXPANDING TESTING AND IMMUNIZATION TO
             PREVENT Rh DISEASE                           72
               Methods of.prevention                      72
               Lack of complete national information
                 on incidence and immunization            73
               Underutilization of Rh immunoglobulin      74
               Requiring blood typing appears to help     75
               Federal programs could help                76
               Conclusions                                78
               Recommendations                            78
               Agency comments                            79

   9       IMPROVING EARLY CHILDHOOD EXPERIENCES          80
               Preventive techniques                      80
               Ongoing programs have not been system-
                 atized                                   82
               The need for Federal evaluation of
                 prevention techniques                    83
               Conclusions                                85
               Recommendations                            85
               Agency comments and our evaluation         86

APPENDIX

   I.      Letter of July 25, 1977, frQm the Inspector
             General, HEW                                 87

  II       Letter of February 15, 1977, from the
             Executive Director, President's Committee
               on Mental Retardation                      97

 III       Principal HEW officials responsible for
             activities discussed in this report          99 '

                         ABBREVIATIONS

CDC        Center for Disease Control
EPSDT      Early and Periodic Screening, Diagnosis,
             and Treatment
FEP        free erythrocyte protoporphyrin
GAO        General Accounting Office
HEW        Department of Health, Education, and Welfare
PCMR       President's Committee on Mental Retardation,
PKU        phenylketonuria
                         CHAPTER 1

             MENTAL RETARDATION AND ITS CAUSES

     Mental retardation is one of the Nation's greatest
long-term public health, social, and economic problems.
Although precise data on the extent of mental retardation
in the United States is not available, authorities estimate
that Dver 6 million persons are ~entally retarded and that.
over 100,000 new cases of retardation occur each year.
some estimate that as many as 4 million of the 80 million
children expected to be born (at present birth rates)
by the year 2000 will be or become retard~d.

     In 1974 the Department of Health, Education, and Welfare
(HEW) estimated the national cost of mental retardation at
between $8.5 and $9 billion annually, including care, treat-
ment, and the economic losses attributable to the decreased
productivity of the retarded. HEW estimated that it alone
spent over $1.7 billion in fiscal year 1976 for the mentally
retarded. The President's Committee on Mental Retardation
{PCMR) estimates that if the number of persons who are
severely or profoundly retarded (about 5 percent of the total)
could be reduced by half by the year 2000, the annual savings
would be $2.7 billion.

     In 1971 PCMR declared that, by using present knowledge
and techniques from the biomedical and behavioral sciences,
the occurrence of mental retardation could be reduced by 50
percent by the end of this century. Later that year, Pres-
ident Nixon adopted this figure as a national goal. Presi-
dent Ford reaffirmed the goal in 1974.  In 1976, PCMR called
for reducing the incidence of mental retardation (1) from
biomedical causes by at least 50 percent by the year 2000
and (2) associated with social disadvantage to the lowest
level possible by the end of the century.  The Committee
reported:

    "* * * If the American people have the will to
    achieve this goal, it can be done--but it will
    require a serious and sustained effort to apply
    the means that are available.  To reach the
    halfway mark in the next 25 years is ehtirely
    feasible with the knowledge that we now have.
    To exceed the President's goal for this cen-
    tury is quite possible if we expand knowledge
    and apply it at the rate we have done in the
    past 25 years."




                            1
           The Congress has recognized the importance and benefits
     of preventing mental retardation through the many laws enacted
     or under consideration which deal directly or indirectly with     or
     preventing retardation.   These include the National Sickle       of
     Cell Anemia, Cooley's Anemia, Tay-Sachs and Genetic Diseases      of
     Act; the Lead Based Paint Poisoning Prevention Act; the Clini-    ir
     cal Laboratories Improvement Act of 1976; and the Mental          ar
.I   Retardation.Facilities and Community Mental Health Center         sr
     Construction Act of 1963.   The latter act authorized construc-   cl
     tion of mental retardation research centers and university-
     affiliated facilities to conduct basic research on mental
     retardation and to train professionals in the field of            a~
     mental retardation.   In addition, the Congress has specifi-      tl
     cally mandated the maternity and infant care, infant inten-       c<
     sive care, and family planning projects, authorized under
     title V of the Social Security Act, to help reduce the            c;
     incidence of mental retardation.

     DErINITION OF MENTAL RETARDATION                                  F
                                                                       i
           The American Association on Mental Deficiency defines       s
     mental retardation as significantly subaverage general
     intellectual functioning existing concurrently with deficits
     in adaptive behavior and manifested before age 18.   Signif-
     icant subaverage intellectual functioning means more than·         M
     two standard deviations below normal on intelligence quotient
     tests (approximately 70 and below). The Association cate-
     gorizes successive degrees of impairment as mild, moderate,        c
     severe, and profound. The range of intelligence quotients          E
     and HEW's estimate of the percentage of mentally retarded
     in ·each level follows.

                                                     Estimated
          Level of                                   percent,of
     mental retardation    Intelligence quotient     occurrence

         Mild                   52   to 67            89.0
         Moderate               36   to 51             6.0
         Severe                 20   to 35             3.5
         Profound               19   and below         1.5

                                                     100.0




                                     2
      fii


!d.              The Association defines behavior as the effectiveness
            or degree with which the individual meets the standards
            of personal independence and social responsibility expected
            of his age and cultural group. Therefore, persons with low
            intelligence quotient scores but who have sucessfully adapted
            are not considered retarded. Conversely, individuals who
            show poor adaption but normal intelligence are also not
            classified as retarded.

                 The more severe cases of retardation are likely to be
            associated with organic defects and tend to be spread evenly
            throughout the population. However, the mildly retarded are
            concentrated among low-income families.

            CAUSES OF MENTAL RETARDATION

                 Many causes of mental retardation have been identified.
            Frequently, several factors and possible causes may coexist,
            interact, or overlap, making it difficult to identify a
            specific cause.

                 Following are some of the major causes of retardation.

            Metabolic disorders

                 A child born with a metabolic disorder cannot convert
            certain foodstuffs into energy because he lacks a specific
            enzyme. These disorders are inherited from both parents as
            each parent passes one faulty gene to the unborn child.  If
            untreated many metabolic disorders can produce mental retar-
            dation. Phenylketonuria (PKU) is one of the more commonly
            known of these disorders.

            Prematurity and low birth weight

                 It is not conclusive that prematurity or low birth
            weight alone handicap an infant's intellectual and behavi-
            oral development.  However, mental retardation occurs
            much more frequently in premature or low birth weight
            infants than among full-term or normal birth weight infants.

            Malnutrition

                 Severe malnutrition, particularly during pregnancy and
            the first 6 months following birth, can substantially impair
            brain development. The effects of milder degrees of mal-
            nutrition are less clear-cut, but it is generally agreed
            that a good diet during pregnancy and infancy can help re-
            duce the incidence of mental retardation by



                                           3
     --lessening the incidence of low birth weight;               s
     --lessening the likelihood that toxic substances,            E
       which might harm the baby, will be in the mother's
       blood; and·
                                                                  r
     --improving the mother's general health, enabling her        E
        to better· cope with such possible hazards as infec-      ~
        tion or hemorrhage.

Chromosome abnormality

     Chromosomes are the threadlike parts of human cells
that carry hereditary traits. Normally, every cell in the
body has 46 chromosomes. However, genetic errors can occur
which may result in an individual having too many or too
few chromosomes or in part of a chromosome breaking off and
reattaching to another chromosome. For example, Down's
syndrome, a major clinical cause of mental retardation,
usually results f(om the presence of an extra chromosome.

Infections

     Several infections, such as rubella (German measles),
are hazardous for an unborn baby if contracted by the mother
during pregnancy.   Others, such as regular measles (rubeola),
can cause mental retardation when contracted by young children.
Other examples ar.e: syphilis, mumps, and chicken pox.

Intoxication

     Intoxication is poisoning produced by a drug, serum, or
other toxic substance. Types of intoxication include lead
poisoning and Rh blood incompatibility between mother and
baby. Chronic alcoholism in the mother can also result in
menta~ly retarded offspring.

Brain injury or disease

     Injury can result from an accident involving the preg-
nant woman; injury during the birth process, such as forceps
injury; or injury. to the child after birth, such as an auto-
mobile accident or child abuse.

     Brain damage can also occur from oxygen starvation as
a result of breech delivery, twisting of the umbilical
cord, or premature separation of the placenta.




                              4
          Mental retardation can also be caused by brain disease,
     such as tuberous sclerosis, ttimors, blood clots, or hemorrhage.
     Environmental influence
          In about three-fourths of the diagnosed cases of mental
     retardation, no organic cause can be identified. Adverse
     environmental conditions are considered a major cause of this
     kind of mental ret?rdation, commonly called "sociocultural,"
     "cult~ral-familial," or "retarda~ion associated with psycho-
     social disadvantage."
          Children with economically, socially, and educationally
     deprived backgrounds are at high risk. According to one
     expert, children born and reared in urban ghettos or impov-
     erished rural areas are 15 times more likely to be diagnosed
     mentally retarded than children from middle-class, suburban
     environments.
          Although there is still a great deal of debate about
     what actually causes this kind of retardation, a number of
     factors appear to be involved.
          Physical factors (infection, nutrition, poisons, etc.)
     have not been ruled out as possible contributing causes of
     sociocultural retardation. Experiments have been conducted,
     however, in which children from poor environments were provi-
n.   ded early developmental experiences. Such children usually
     achieved at least average intellectual performance. Many
     professionals, therefore, believe that early experiences
     are the most important factors in causing or preventing
     sociocultural retardation.
     PURPOSE AND SCOPE OF REVIEW
          We made our review to determine what has been done to
     prevent retardation and what can and should be done to reduce
     it.
          We contacted headquarters and regional officials of the
     following HEW agencies and off ices about their roles in
     prevention, any emphasis they had given to it, or assistance
     they had given to the States.




                                   5
     Office of Human Development:
          Off ice for Handicapped Individuals                      pr
          Off ice of Child Development                             or
          Rehabilitation Services Administration                   fc
          Developmental Disabilities Office
                                                                   aI
          Staff of the ~resident's Committee on Mental             we
            Retardation                                            oj
                                                                   rE
     Office of the Assistant Secretary for Health:                 01
          Off ice of Population Affairs
          Division of Health Services and Prevention
            Operations                                             tl
          Alcohol, Drug Abuse, and Mental Health                   kl
            Administration                                         a:
          Center for Disease Control (CDC)                         rn1
          Office of Child Health Affairs
          Health Resources Administration
          Health Services Administration                            R
          National Institutes of Health                             g
                                                                    c
     Health Care Financing Administration:   !/                     h
          Medical Services Administration                           rn
                                                                     s
     Office of Education:                                           d
         Bureau of Education for the Handicapped                    e
                                                                    t
     We visited the State departments of health and education
in California, Georgia, and Missouri and other federally or
State-supported activities to determine what programs they
operated relating to retardation and what evaluation had been
made of the programs' impact on prevention. We contacted
private organizations, such as the National Foundation-
March of Dimes, hospitals, and colleges, to determine their
role in prevention of retardation, and read a great deal of
literature on the subject. In particular we relied heavily
upon National Association for Retarded Citizens publications
to explain
        I
           highly technical subjects in nontechnical terms.



l/On March 8, 1977, the Secretary of HEW announced the abolish-
- ment of the Social and Rehabilitation Service and the transfer
  of the Medical Services Administration to a new Health Care
  Financing Administration. Because the Social and Rehabilita-
  tion Service was the responsible agency during the period
  covered by our review we will use that name throughout this
  report.



                             6
     Chapter 2 of this report describes some of the HEW
programs and agencies .which provide services to the retarded
or relate to prevention of retardation. The remaining chapters
focus on selected causes of mental retardation for which it
appears that more intensive implementation of the techniques
would result in reduced incidence. Neither the selection
of specific causes nor the arrangement of chapters in this
report are intended to stress the importance of any one cause
or minimize the significance of other causes.
     While we have concentrated in this report on actions
that can be taken to prevent mental retardation with existing
knowledge and technology, we recognize that research is needed
and is ongoing into the causes and possible methods of preventing
mental retardation~
     In addition to HEW and the President's Committee on Mental
Retardation, the States of California, Georgia, and Missouri were
given an opportunity to comment on a draft of this report.
Comments were received from Missouri officials and those comments
have been considered in this report. PCMR agreed with our recom-
mendations and advised us that they will be meeting with repre-
sentatives of each of the Federal departments in order that each
department may identify those programs they will initiate or
expand in order to make significant contributions to reducing
the incidence of mental retardation.




                             7
                                 CHAPTER 2

                        IMPROVEMENTS NEEDED IN HEW

                 ADMINISTRATION OF THE PREVENTION EFFORT

              Despite the President's goal of reducing mental
        retardation by half by the end of the century, (1) no HEW
        agency has been made responsible for monitoring the i~plemen­
        tation of the goal, coordinating efforts, clarifying agency
        roles and resource commitments, or measuring progress
        in meeting the goal; (2) the goal has not been designated
        an objective by those HEW agencies with prevention responsi-
        bilities; and (3) systems have not been established or
        methods developed to assess progress in achieving the
        goal.

        FEDERAL INVOLVEMENT

             In 1963 President Kennedy sent a special message to the
        Congress calling for national programs to combat mental re-
        tardation.  Since then, Federal efforts aimed at preventing
        mental retardation have grown substantially. The Federal
        Government has (1) sponsored biomedical research; (2) pro-
        vided funds to pay for clinical and laboratory services,
        construction, and training; (3) sponsored demonstration
        projects to stimulate States to commit resources to pre-
        venting retardation; and (4) funded grant-in-aid programs
        to help States provide preventive services.

             HEW is the principal Federal department concerned with
        mental retardation. As far back as 1962, the President's
        Panel on Mental Retardation 1/ reported that HEW must
        assume major responsibility ~t the Federal level in areas
        of mental retardation.  The panel also state.a that HEW should
        serve as a resource to the other departments for whatever
        expert consultation is required.

             At least seven HEW agencies administer programs that
        relate to prevention of mental retardation by providing
        funds for



        l/A panel appointed by the President on October 17, 1961, to
        - prepare a national plan to combat mental retardation. The
          panel was dissolved following the publication of its report
          in October 1962.
   I
, "II

                                     8
     --services to mothers, infants, and children, such as
       direct clinical care, medical services, and education;
     --training of professionals;
     --construction of research and training facilities; and
     --research and demonstration projects.
These agencies are the Office of Human Development; Health
services Administration; Social and Rehabilitation Service
(see footnote on p. 6}; Office of Education; National
Institutes of Health; Alcohol, Drug Abuse, and Mental Health
Administration; and the Center for Disease Control. Some
of the programs these agencies administer are discussed below.
Maternal and child health and
crippled children's programs
     Grants are made to States under these programs. The
basic purposes of these programs are to (l} reduce infant mor-
tality and otherwise promote the health of mothers and chil-
dren and (2) locate, diagnose, treat, and provide followup
care for children who suffer from crippling or handicapping
illnesses. These programs, which are authorized under title
V of the Social Security Act (42 U.S.C. 701}, are the major
means through which the Government provides (l} basic
preventive maternal and child health services to persons in
economically depressed areas and (2} services to crippled
children.
     To receive their maternal and child health and crippled
children's funds the States must have a plan which includes
a "program of projects" in maternity and infant care, inten-
sive infant care, comprehensive health care for children
and youth, dental health care for children, and family
planning. Title V funds also support 166 mental retardation
clinics, 20 biochemical and cytogenetic laboratories, and
training programs at 21 university-affiliated facilities. !/
The maternal and child health and crippled children's


l/The university-affiliated facilities, which were con-
- structed with. Federal funds, are designed to provide
  comprehensive multidisciplinary training for special-
  ists who will work with the mentally retarded and other
  developmentally disabled individuals.




                                9
I   I
        programs combined were appropriated $282.9 million in           p
        fiscal year 1975 and $319.4 million in fiscal year 1976.        T
                                                                        t
        Developmental disabilities program                              E


              Formula grants are provided to States under the De-
        velopmentally Disabled Assistance and Biil of Rights Act        f
        (42 ·u.s.c. 6001) for planning, administering, and eval-
        uating programs; constructing facilities; and providing
        services for the developmentally disabled, primarily
        the mentally retarded. The program also provides
        administrative support funds to university-affiliated
        facilities. This program was appropriated $55.6 million
        in fiscal year 1976.
        Family planning programs
              Family planning programs are authorized under many
        separate laws having different .program objectives. Health
        program financing for family planning services are author-
        ized under title V of the Social Security Act (included
        under maternal and child health programs) and title X
        of the Public Health Service Act. Other HEW family plan-
        ning activities are funded under titles XIX (Medicaid)
        and XX of the Social Security Act. HEW expenditures for
        family planning programs totaled an· estimated $167 million
        in fiscal year 1975, including an estimated $35 million
        expended under title v. Family planning helps to prevent
        mental retardation by promoting optimal child spacing and
        helping to prevent unwanted pregnancies.
        Mental retardation research centers
             Twelve mental retardation research centers were
        established to investigate mental retardation problems
        and related aspects of human development and to provide
        training opportunities for research specialists. The
        research centers receive funding from several Federal,
        State, and private sources. The National Institute of
        Child Health and Human Development provides administrative
        support for the centers.
        Early and Periodic Screenin~,
        Diagnosis, and Treatment (EPSDT)
             The Social Security Amendments of 1967 required EPSDT
        to be implemented in every State that had a Medicaid program.
        The purpose of health screening is to identify children with



                                    10
previously unrecognized health problems as early as possible.
The EPSDT program is designed to periodically survey children
to be sure there are no hidden problems. The States reported
expenditures of $46.3 million in fiscal year 1976 for
screening. This figure does not include treatment costs.

Head Start
     The Head Start program was established in 1965 to pro-
vide health, educational, nutritional, social, and other
services primarily to economically disadvantaged preschool
children, their families, and their communities. The
program is currently administered by the Off ice of Child
Development within the Office of Human Development. Head
Start program officials stated they believe the program helps
reduce the effects of mental retardation although that is
not a specific Head Start goal. The Head Start program had
a $461.5 million appropriation in fiscal .year 1976.

Disease prevention and control

     CDC operates several programs which relate to mental
retardation prevention, including lead poisoning screen-
ing projects, project grants to States for immunization
programs, and surveillance of incidence and immunity levels
of infectious diseases, Rh blood disease, and congenital
malformations. CDC was appropriated $3.5 million for lead
screening and $4.96 million for immunizations in fiscal
year 1976 compared to $9 million and $6.2 million, re-
spectively, in fiscal year 1975.

Programs operated by other departments

     Other Federal departments also have programs which relate
to preventing mental retardation. These include the Department
of Agriculture's nutrition programs and the Department of
Housing and Urban Development's lead-based paint prevention
programs.

RESPONSIBILITY FOR IMPLEMENTING,
MONITORING, OR COORDINATING A
NATIONAL PREVENTION STRATEGY
HAS NOT BEEN FIXED

     Although some HEW organizations have major responsibil-
ities for coordinating or operating mental retardation ac-
tivities or programs, including the President's Committee




                             11
on Mental Retardation 1/ and the Off ice for Handicapped
Individuals, none has overall responsibility for developing
a prevention strategy, determining and implementing
efforts needed to accomplish the President's goal, or
defining the responsibilities of agencies and programs
that do or could have an impact on the goal.  In addition,
agencies that have major responsibilities for improving child
health and preventing childhood disabilities, primar~ly the
Bureau of Community Health Services, Health Services Adminis-
tration, have neither developed a strategy for, nor established
methods of, measuring progress in reducing i~s incidence.

President's Committee on Mental Retardation

      PCMR was established in 1966 to (1) assist the Pr~sident
in evaluating the national effort to combat mental retardation,
coordinate Federal activities, provide liaison between Federal
and other public and private agencies, and educate the public
on how to reduce the incidence of mental retardation and ame-
1 iorate its effects and (2) mobilize professional and general
public support for mental retardation activities.   Its staff
is administratively located in HEW's Office of Human Develop-
ment.

     In 1971 President Nixon directed Federal agencies to
put their full support behind PCMR to help reduce the in-
cidence of mental retardation and directed all executive
departments and agencies to evaluate their programs as
the first step of a coordinated national effort.

     PCMR's responsibilities were expanded by, Executive
Order 11776 in March 1974 to include identifying the
potential of various Federal_programs for achieving the
Presidential goals in mental retardation, including pre-
vention.  This Executive order also required Federal ag~n­
cies to designate mental retardation liaisons with PCMR.

     PCMR has promoted public awareness of the needs of the
mentally retarded and identified problems needing attention
to help combat mental retardation and actions which could




l/PCMR is not technically an HEW organization. However,
- because the Committee's staff is administratively located
   in HEW and because of the close ties it has with HEW, we
   included the Committee under this section.




                             12
help solve or alleviate many of the problems confronting
the retarded. According to PCMR, its accomplishments have
included:

     --Being the catalyst in urging the President to (.1)
       make prevention of mental retardation a national
       goal and (2) make statements on the need for im-
       munizations and on lead poisoning prevention.

     --Issuing several publications relating to the pre-
       vention of mental retardation.

     --Sponsoring several symposiums, workshops, and
       meetings on the problems of mental retardation.

     --Identifying 91 programs in 22 Federal departments and
       agencies that affect the mentally retarded.

     --Identifying actions that could be taken by various
       Federal agencies to help reduce the incidence of
       mental retardation.

     PCMR, however, has not been given, nor assumed, re-
sp~nsibility for directing Federal efforts to prevent re-
tardation nor has it been given the responsibility to ini-
tiate, implement, or coordinate programs or to assess the
progress of HEW agencies in meeting the Presidential· goal.

     Although, as mentioned above, PCMR does have certain
responsib~lities relating to the achievement of the Pres-
idential goal, its responsibilities are not specific and
PCMR does not have the resources to fulfill its Presiden-
tial mandate. This may also be due, in part, to a May 1974
agreement between PCMR and the Off ice for the Handicapped
(now Office for Handicapped Individuals) which stated that
the Office for the Handicapped would take responsibility
for conducting mental retardation activities within HEW
and PCMR would coordinate the activities of departments
and agencies outside of HEW.  The agreement did not specify
whether this responsibility included prevention of mental
retardation.  Because the activities of agencies outside
HEW primarily involve services to the retarded rather than
prevention of retardation, we did not determine the extent
to which PCMR carried out this agreement.




                             13
     Off ice for Handicapped Individuals
             The Secretary of HEW established an Off ice of Mental
       Retardation Coordination in 1972 to coordinate the Depart-
     . ment 's programs and activities affecting the mentally re-·
       tarded, including prevention activities. The Office's
       reponsibilities were changed in February 1974 by the Re-
       habilitation Act Amendments of 1974 and its name was
       changed to Office for the Handicapped; the name was later
       changed to Office for Handicapped Individuals.
          As a result of these changes, prevention of mental
     retardation ceased to be· an Office objective. As its
     name suggests the Off ice of Handicapped Individuals pro-
     vides and coordinates services to individuals already iden-
     tified as handicapped. The Office does not consider pre-
     vention of handicapping conditions to be a part of its man-
     date. An Office official said that the Office had neither
     initiated or implemented any new programs nor coordinated
     already existing programs to prevent retardation; nor had
     it been asked to do so.
     Bureau of Community Health Services
          The Bureau of Community Health Services, Health Services
     Administration, was established to help communities find the
     best ways of meeting their health needs. Several Bureau pro-
     grams help prevent mental retardation, including maternal
     and child health programs, mental retardation clinics, cyto-
     genetic and biochemical laboratories, family planning, and
     financial support to university-affiliated facilities. These
     programs are described on pages 9 and 10.
          The Bureau's Deputy Director for Maternal and Child
     Health Program Services stated that the Bureau, more than any
     other HEW agency, should be responsible for implementing the
     President's goal. Moreover, it? maternal and child health
     special projects (maternity and infant care, intensive care,
     and family planning) are specifically mandated by the Congress
     help reduce the incidence of mental retardation. Nevertheless,
     the Bureau neither developed a strategy to accomplish the goal
     nor monitored· progress toward achieving it.
i:        A Bureau official told us that, although a specific
     objective to prevent mental retardation had not been estab-
     lished, mental retardation was an integral part of maternal
     and child health services. In addition, he stated that the
     Bureau had emphasized prevention of mental retardation by the



                                   14
    ·congress earmarking of funds (the earmarking is no longer done
     but the Bureau has agreed to reserve the funds for that pur-
     pose) for special mental retardation projects such as mental
     retardation clinics and biochemical and cytogenetic labora-
     tories.  However, data is lacking on the impact of these pro-
     grams on the prevention of mental retardation.

         The following reasons were given as to why the prevention
    of mental retardation had not been clearly stated as a speci-
    fic objective for maternal and child health programs.

         --The maternal and child health programs have been
           reorganized three times under different agencies,
           not all of which emphasized mental retardation
           programs.

         --The grant authority for maternal and child health
           programs has been decentralized to the regions, thus
           reducing headquarters involvement.

         --Sizable cuts in staff have precluded monitoring or
           focusing on this area.

         --The lack of an objective at the departmental level.
s
    THE PRESIDENT'S GOAL HAS NOT
    BEEN ESTABLISHED AS AN HEW OBJECTIVE

         Although HEW is the primary Federal agency responsible
    for preventing mental retardation and providing support to
e   the retarded, neither it nor its constituent agencies have
    established the President's goal of reducing the incidence
    of retardation by half by the end of the century as a de-
    partmental or agency objectiveo

         HEW implemented a management-by-objective system in
    1969. The system is a part of the Federal management-by-
    objective system administered by the Off ice of Management·
    and Budget. Briefly, HEW's planning incorporates the
    following components:

         --Issue analysis and policy development.

         --Forward plans, which set the Department's long
           term direction (2 to 6 years).

         --Operational plans, which are immediate steps the
           Department must.take to accomplish long-range goals.




                                 15
     Our review of the Secretary's annual planning guidance
memorandums issued from 1972-75 showed that prevention of men-
tal retardation was not specifically identified as an issue
to be addressed in HEW's planning system. PCMR officials
told us that for fiscal year 1977f HEW is considering add-
ing prevention as an operational objective under the manage-
ment-by-objective system using the deinstitutionalization ob-
jective as a model.

     PCMR was designated lead agency in developing the deinsti-
tutionalization strategy.  In carrying out this objective, PCMR
set up five task forces, one of which was concerned with the
prevention of institutionalization. The ch~irman of that
task force told us that it will address preventing mental
retardation as one way of preventing institutionalization. l/
However, he did not expect to develop a specific strategy
for preventing mental retardation.

     Although prevention of mental retardation had not been
designated an objective by any of the agencies we contacted,
some agencies had related objectives. For exam?le, the
Health Services Administration implemented a child health
objective beginning in fiscal year 1975 which included
prevention aspects, such as:

     --Improving the health of children by increasing
        accessibility to health care and the scope of serv-
        ices.

     --A coordinated HEW effort to implement the Early and
       Periodic Screening, Diagnosis, and Treatment program.

     --Maintenance of current immunity levels   among children
       up to age 9 during a period when grant   resources are
       being reduced. We were told, however,    that this por-
       tion was not included in the objective   for fiscal year
       1976 because of the priority given the   swine flu vac-
       cine.




I/Efforts to provide services to mentally disabled persons
- in communities rather than institutions wa~ the subject
  of our report "Returning the Mentally Disabled
  to the Community: Government Needs to Do More" (HRD-
  76-152, Jan. 7, 1977).




                             16
     In June 1975, HEW's Public Health Service reported in its
Forward Plan for Health, fiscal years 1977-81, that the child
health strategy will focus on reducing infant mortality and
low birth weight by·giving special attention to genetic fac-
tors and maternal health services, including family planning.
Also, immunization targeted to low-income families and coop-
erative activities with the Medical Services Administration
in conducting the Early and Periodic Screening, Diagnosis,
and T~eatment program are highlighted.

     In its Forward Plan for Health, fiscal years 1978-82,
the Public Health Service outlined five of its objectives,
including implementation of an aggressive prevention strategy.
This objective included improving the effectiveness of pre-
vention activities in alcoholism, drug abuse, and mental
illness--mental retardation was not mentioned.

     However, another part of the objective did state that
particular priority would be given to (1) making amniocentesis
(seep. 45) generally available to women over age 35, (2)
decreasing the rate and adverse consequences of adolescent
pregnancies, (3) increasing immunization levels of children,
and (4) beginning a program of assisting States to develop
child health care systems. All of these could affect pre-
vention of mental retardation.

      We discussed the President's goal and the management-by-
objective system with officials of the Management Division
of the Off ice of Management and Budget. They said that the
Off ice of Management and Budget had not taken any specific
action to ·implement the President's 1971 directive because
HEW had not asked for the Office's assistance.

LACK OF DATA TO MEASURE PROGRESS
IN MEETING THE GOAL

     HEW has not developed a system to collect data on the in-
cidence of retardation.   In addition, no method has been devel-
oped to collect information on a special-study basis nor has
an organization been assigned responsibility for developing
such data.

     Incidence and prevalence data can be used to determine
the extent and distribution of a condition and to measure
progress in reducing it.  Incidence of retardation refers to
the frequency of occurrence of new cases of mental retardation
in a population during a designated period.  Prevalance
refers to the proportion of persons in a population who




                             17
      are considered mentally retarded at a given time. The           re
      incidence of mental retardation ultimately determines its       Th
      prevalence.                                                     be
                                                                      pe
            In 1962 the President's Panel on Mental Retardation       re
      recommended that a system for gathering information on          3
      the incidence and prevalence of mental retardation be de-       He
      veloped. In November 1971 the President directed the Bu-        th
      reau. of the Census to take steps to develop more complete      de
      data on the extent of mental retardation. We were informed      ad
      by PCMR and Bureau of the Census officials that Census had
      taken no action to develop such data primarily because:
                                                                      fa
           --Census would have no method before the 1980 census
             for obtaining an accurate assessment short of knocking
             on every door and asking how many retarded individuals
             lived there.

 Ii        --Even if a method could be developed, Census did not
             have sufficient funds to conduct such a survey.
 II        In a 1976 report to the President, PCMR cited some
II    of the difficulties in trying to determine the incidence        am
      and prevalence of mental retardation, including:
I
           --The cause in each case of mental retardation cannot be   me
             identified so incidence cannot be determined at its      ma
             source.                                                  pa
                                                                      on
           --In only a few cases can mental retardation be deter-     di
             mined at birth.                                          as
                                                                      of
           --Children classified socioculturally retarded do          pr
             not begin to show deficits in functioning until after    da
             they begin school.                                       va
                                                                      SU
           --There is no assurance that a person identified as        ed
             being retarded may not at some time cease to be          be
             so regarded.                                             in
                                                                      ca
           Without good incidence data it is difficult to develop     or
      information on the prevalence of mental retardation. PCMR
      pointed out that the incidence of the more severe forms of
      retardation can be determined with a fair degree of accuracy     th
      because the individuals are obviously retarded and the           in
      diagnosis can usually be confirmed medically. But when the       by
      mildly retarded are added, the accuracy is questionable.         by
                                                                       to
                                                                       vi,



                                   18
     For example, for many years the prevalence of mental
retardation was estimated at 3 percent of the population.
This estimate, howeve~, is now disputed. One authority
believes that, while it may be correct to say that about 3
percent of all children born will sometime be diagnosed as
retarded, it is .incorrect to conclude that on any given date
3 percent of the population could be classified as retarded.
He placed the latter figure at about 1 percent and attributes
the difference in part to persons who are identified as retar-
ded during their school years, but escape this labeling as
adults.
     The widely quoted 3-percent figure is affected by many
factors including
     --changes in definition of mental retardation,
     --ways used to identify mildly retarded individuals, and
     --confusion regarding what constitutes sociocultural
       retardation.
     In addition, significant differences in prevalence occur
among different regions, ethnic groups, and income groups.
     In a March 1976 report to the President, PCMR recom-
mended that the Federal Government create a national infor-
mation system on mental retardation through which its de-
partments and the States could get prompt and reliable data
on which to base their planning. We discussed with PCMR the
difficulty of developing an information system that would
assess progress in preventing mental retardation in light
of the difficulties of accurately measuring incidence and
prevalence. The Executive Directoi told us that, although
data on the incidence of retardation was not available,
various other indexes could be used to measure progress,
such as reductions in the number of children in special ·
education classes or institutions, reductions in the num-
ber of cases of retardation due to specific causes for which
incidence is known, and reductions in the incidence of known
causes of retardation such as prematurity and genetic dis-
orders where the incidence of retardation is not as certain.
     Officials of the Mental Retardation Research Center at
the University of California, Los Angeles, said that progress
in prevention could also be measured by using data generated
by programs involved in early screening, such as EPSDT, and
by developing a tracking system to monitor services provided
to the.retarded. Eventually, reductions in the services pro-
vided would indicate reductions in incidence.


                            19
     PCMR's Executive Director told us that some agencies,
particularly the Bureau of Community Health Services and the
National Institute of Child Health and Human Development,
have been working on ways to assess the impact of specific
programs or projects on reducing the incidence of retardation.
However, no agency within HEW has been specifically made re-
sponsible for studying possible methods of measuring progress
in meeting the Presidential goal.

·CONCLUSIONS

     If the incidence of mental retardation is to be reduced
to the maximum extent possible a specific group within HEW
must be made responsible for implementing and monitoring
a national prevention strategy, clarifying agency roles, and
determining which and how HEW programs can best assist in the
effort. The responsibilities of this organization should
include coordinating the mental retardation prevention efforts
of the various HEW programs and developing a method to measure
the progress being made.

     If the Presidential goal is to be meaningful, a method of
compiling comprehensive data on the incidence and prevalencP
of mental retardation, on either a continuing or special-
study basis, should be developed~ This would be in
addition to the need for an operational objective which
would establish responsibilities and coordination and
would determine what actions the various HEW programs
could take to assist in the prevention effort.

RECOMMENDATIONS

     We recommend that the Secretary of HEW:

     --Designate a focal point within HEW to implement
       a national prevention strategy_, monitor and coor-
       dinate the efforts of the various HEW agencies
       and offices, and develop a method of determining
       the progress being made in reaching the goal.

     --Designate prevention of mental retardation an
       objective in HEW's operational planning system.

AGENCY COMMENTS AND OUR EVALUATION

     HEW agreed with our recommendation to designate a focal
point in HEW for the mental retardation prevention effort.   The




                             20
office of the Assistant Secretary for Health will be the focal
point. Specific responsibility will be designated by the in-
coming Assistant Secretary for Health.

     As to our recommendation that prevention of mental retar-
dation be designated as an objective in HEW's operational
planning system, HEW advised us that they would consider in-
cluding it as an objective if the operational planning system
is continued. Whether the departmental.system is continued or
not, the relevant issues will be monitored by the agency
tracking system.

     We believe the HEW comments are responsive to our recom-
mendations. Our recommendation that prevention of mental
retardation be established as an objective in the operational
planning system was made as one possible method to monitor
implementation of the Presidential objective by the various
agencies in HEW. Other methods which would accomplish this
would also be responsive to the intent of our recommendation.




                            21
                             CHAPTER 3
I

                   EXPANDING NEWBORN SCREENING FOR

                         METABOLIC DISORDERS

         Mental retardation caused by inherited metabolic dis-
    orders 1/ can often be prevented if the afflicted infant is
    treated-shortly after birth.
         ~s of 1975 almost all States had programs for testing
    a sample of blood of newborn infants to detect phenylketonuria
    one of the most widely known metabolic disorders. How-
    ever, improvements are needed in many of these programs to ef-
    fectively reach all infants. Also, only a limited number of
    States were testing for other treatable metabolic disorders
    which can be identified from the same blood sample.
         Metabolic disorders are not common; however, our analysis
    of the estimated costs and benefits of PKU screening showed
    that the monetary savings that result from avoided costs of
    caring for retarded individuals significantly exceed the cost
    of screening all newborn inf ants and treating the affected
    individuals. Also, by using automated laboratory methods,
    tests for other disorders can be made on the blood sample
    drawn for PKU testing at little or no additional cost (when
    done on a large number of blood samples), thereby preventing
    even more cases of mental retardation and realizing greater
    savings.
         Federal maternal and child health funds support newborn
    screening programs in many States. However, although HEW
    has encouraged the States to improve their screening pro-
    grams, the basic responsibility lies with the States.
    Therefore, some programs are more comprehensive and effec-
    tive than others.
    BACKGROUND

         About 200 metabolic disorders have been discovered al-
    though not all result in mental retardation. Many are


    l/We recognize that metabolic disorders and chromosome abnor-
    - malities, which are discussed in chapter 5, and their pre-
      ventive techniques are not mutually exclusive. However, we
      separated them because the diagnostic techniques and nature
      of the diseases are generally quite distinct.


                                 22
treatable by special diet or dietary supplements, but for
treatment to be successful in preventing mental and physical
damage, it must be s~arted soon after birth.

     one of the most widely known metabolic disorders asso-
ciat~d  with mental retardation is PKU. The child with PKU
cannot produce the enzyme which metabolizes a particular
protein in food.   The child appears healthy during the first
few months of life and will show signs of the disease only in
blood and urine.   If the disease is not discovered and dietary
treatment begun shortly after birth (within 4 to 6 weeks ac-
cording to one expert), the child will likely be retarded;
the longer treatment is delayed, the more severe the retar-
dation.
     Other treatable metabolic disorders which can cause re-
tardation include homocystinuria, galactosemia, maple syrup
urine disease, tyrosinosis, histidinemia, and hypothyroidism.l/
Homocystinuria, like PKU, should be identified and treatment -
started within 4 to 6 weeks.after birth. Similarly, if treat-
ment for hypothyroidism is to be most effective, it should
start within 3 months after birth. Galactosemia, maple syrup
urine disease, and tyrosinosis are more acute and treatment
should be started as soon as possible after birth; a delay of
a week can be devastating.  For histidinemia, the exact link to
retardation and the recommended course of treatment are not as
clearly known as they are for the others.

     Using available repotted data and estimates by genetic
service providers, we estimated that about 1,100 babies are
born each year afflicted with one of the seven disorders
named above.  (Seep. 30.)

AVAILABLE SCREENING PROGRAMS

     Screening for early detection of metabolic disorders
has been conducted for only about 15 years and has been
confined, until recently, largely to PKU.

     As of 1975, 48 States had PKU screening programs.   In
almost every State testing was mandatory under State law
and was regulated by the State's department of health.
Most State laws require that all newborn inf ants be tested



l/Hypothyroidism is technically an endocrine disorder but
  we have included it among metabolic disorders because of
  similarity in detection and treatment.



                               23
unless the parents object on religious grounds; some do not
requ1re the test if there is general parental objection.
Even in those few States and jurisdictions that do not have
mandatory screening programs, most infants are tested.

     In general, most States place the responsibility for
insuring that tests are performed on the delivering physician,
the administrative head of the hospital, or, if the newborn
was not delivered by a physician, the mother, nurse, midwife,
or other person assisting in the delivery.  Most samples are
analyzed as a public service by State health department labora-
tories.

      The most widely used PKO screening test is the Guthrie
Bacterial Inhibition Assay. Maternal and child health funds
were used to carry out field trials in 32 States to establish
the accuracy and efficiency of this procedure. The Guthrie
test entails collecting a few drops of blood on a filter
paper which is sent to a laboratory for analysis. Babies
who appear to have a disorder based on the Guthrie test are
followed up with confirmatory diagnostic procedures.

     The Guthrie inhibition assays can also be used to screen
for maple syrup urine disease, tyrosinosis, homocystinuria,
and histidinemia. According to the developer of the test, with
automation all these tests can be done simultaneously at no
more cost than PKO alone unautomated.  Also, with automation,
the same single blood sample can be used to test for galacto-
semia and hypothyroidism at little additional cost. However,
as discussed on page 26, only a limited number of States are
testing for these other disorders·.

COVERAGE FOR PKO APPEARS INCOMPLETE

     The National Academy of Sciences has reported that about
90 percent of the babies born in the United States are tested
for PKO. However, coverage in some areas appears less than
optimal.l/ We could not, however, precisely determine whether
the problem in a specific State was inadequate coverage or
incomplete reporting.




ll   The Director of the Metobolic Disorders Section, Genetics
     Division, Children's Hospital, Los Angeles, advised us that
     ideally all inf ants should be screened for PKO and that 90
     percent would be the minimally acceptable level of coverage.



                               24
         In 1975 a member of the Prevention and Public Health
    committee of the National Association for Retarded Citizens
    sent a questionnaire to health officials in each State. Only
    l5 states have stati?tics showing that their screening programs
    were reaching 90-percent or more of the babies born; 5 States
    were reaching 80 to 90 percent, 2 were reaching 70 to 80 per-
    cent, and 4 were reaching only 60 to 70 percent.

         In five other States, reported data showed coverages
    ranging from 53 to 85 percent. However, officials in these
    states indicated that the records were incomplete and esti-
r   mated that from 87 to 100 percent of the babies born were
    screened. Similarly, in two other States, statistics showed
    screenings of 59 and 87 percent of the babies born.  Offi-
    cials in these States indicated these numbers were incomplete
    but did not know the actual coverage.

         In seven other States, no records were available on the
    extent of screening, but State officials estimated that 95 to
    100 percent of the babies born were screened; in another seven
    States, no estimate of screening coverage was made.  Two
    states had no program and one.State did not respond.

         Of the States we reviewed, California reported that 99
    percent of all newborns were screened for PKU, but coverage
    in the other States was lower.  In Georgia, for example,
    about 67,900 newborns were reported as having been screened
    for PKU in fiscal year 1974; this was only about 79 percent
    of the approximately 86,000 babies born in that period.
    About 42,000 PKU newborn screenings were reported by Missouri
    in 1974, or about 60 percent of the babies born that year.
    The Director of the Missouri Bureau of Maternal and Child
    Health estimated that 85 percent of the infants born in the
    State were being screened for PKU but, in his opinion, many
    of the screenings are not reported.  However, the Director of
t   the Division of Medical Genetics at Washington University
j
    School of Medicine estimated that as many as 30 percent of
    the newborns in Missouri are not being screened.

         No documentation was available in the States we reviewed
    on the incidence of PKU in infants missed during the screening
    process. However, experts told us that

        --even with coverage as low as 70 to 80 percent in Mis-
          souri and Georgia, few, if any, cases of PKU would be
          missed each year;
a
0
~




                                25
     --it would be very hard to locate such cases among
       the numerous facilities providing care for the
       retarded;

     --it is likely that cases in remote rural or moun-
       tainous areas, those most likely to be missed by new-
       born screening, will not be identified as PKU;

     --cases missed by screening of ten will not be recog-
       nized by physicians because PKU will not show up in
       routine blood or urine testing and must be specifi-
       cally tested for; and

     --even those placed in institutions for the    retarded
       would probably not be diagnosed as having    PKU because
       of the absence of routine testing for PKU    by such
       facilities and the inability of the staff    to recog-
       nize its symptoms.

     Officials at one mental    retardation clinic in Missouri
said they were aware of only    one case that had slipped through
the screening program.  They    said cases were probably being
missed, but were not showing    up at the clinic.

STATES GENERALLY DON'T SCREEN
FOR OTHER DISORDERS

     Although almost all States have newborn screening pro-
grams for PKU, at the time of our review, screening for other
metabolic disorders was done routinely by only eight States.

        Disorder                        Number of States
                                           screening
                                            (note a)

Galactosemia
Homocystinuria
Maple syrup urine disease
Tyrosinosis
Hypothyroidism
Histidinemia

a/ Three of these States (Oregon, Montana, and Alaska) par-
   ticipate in a single regionalized screening program.




                                26
      Of the States we reviewed, Georgia and Missouri had
mandatory PKU screening programs, but did not routinely
screen for other metabolic disorders.  In Georgia other
screening has been done on a limited basis.  For example,
in 1975 as a special project of Emory University, 650
infants were screened for maple syrup urine disease, galac-
tosemia, and homocystinuria.

     California passed an expanded newborn screening law in
1975 which allows the department of health to require that
tests be done for other metabolic disorders in addition to
PKO. The law was to become effective July 1, 1976, but con-
troversy over which diseases should be tested and whether
private or State laboratories should do the testing has
delayed implementation.  State health officials expect the
program to start about July 1977.

     One California health official commented that he was
not convinced that testing for some of the disorders had
been proven beneficial enough to warrant investing State
resources.  Similar arguments have been expressed by other
physicians and this hesitation appears to be one reason why
screening has not been more widespread.

     Mass screening programs have not been enthusiastically
supported by the medical profession.  In a 1974 National
Academy of Sciences survey of physicians, nearly three-
fourths of the respondents believed that screening for
particular disorders should be encouraged, but over half
were opposed to mandatory screening. Only about one-
fourth of the 1,000 doctors questioned believed that the
benefits of PKU screening outweighed the costs; about 25
percent believed that screening was not warranted; and
50 percent had no opinion.

     The Chairman of the Academy's Committee for the Study
of Inborn Errors of Metabolism attributed this hesitation
to a lack of knowledge.   Most of the physicians questioned
had no genetics course in medical school.   In general,
they tended to underestimate the incidence of genetic
diseases, the importance of identifying them, and the pos-
sibilities for treatment.  Few acknowledged seeing such
problems and few read about them.   Most physicians believed
that there should be more emphasis on genetics in primary
medical education, as well as continuing education at
higher levels.




                             27
      Dr. Robert Guthrie, the developer of the most widely
used screening test, reports that another reason why test-
ing has not been expanded in more States to include other
metabolic disorders is that screening programs have pri-
marily been restricted to within State boundaries and
many State populations are too small to justify testing
for the rarer disorders.   He has reported that to get
full value from automated screening it must be done on
a large scale--a minimum of i5,000 births a year.   There-
fore, he argues that consolidation of screening is needed
(1) within large States where screening is fragmented into
many programs, each too small to make multiple testing prac-
tical, and (2) between or among States where populations
are too small to warrant multiple screening within each
State.   Bureau of Community Health Services officials
agree that consolidation or regionalization of screening
programs is needed.

     The National Academy of Sciences reported in 1975
that regionalization has been the object of considerable
interest as a ~eans of reducing the number of laboratories
carrying out tests, facilitating quality control, and
reducing costs.   In a 1975 survey of State laborator~es
conducted by the National Association for Retarded Citizens,
36 of the 42 respondents who answered the question, includ-
ing the 3 States in our review, indicated that they are
considering or would consider cooperating with neighboring
States in a regional screening program.    Oregon already
operates a regional newborn metabolic screening program
which serves Oregon,' Montana, and Alaska.   Idaho is also
contemplating joining the program.   Bureau of Community
Health ·services officials told us that Massachusetts
started providing screening services to other New England
States subsequent to our fieldwork.

SCREENING AND TREATMENT
CAN BE COST EFFECTIVE

     Using information and opinions obtained from several ex-
perts in the fields of metabolic disorders and newborn screen-
ing, including Dr. Guthrie, we estimate that PKU screening,
under a well-organized automated system, and lifetime tre~t­
ment of afflicted individuals would cost about $3.3 million
a year.  However, such screening could prevent about 270 cases
of mental retardation and avoid $189 million a year in costs
of providing care and services for individuals who, without




                            28
screening and treatment, would be mentally retarded.!/ Dis-
counted to present value, usi~g ~ 10-percent in~er~st rate,
these figures would be $2.9 m1ll1on and $35.9 m1ll1on, re-
spectively. We also· estimate that adding screening and
treatment of the other six disorders would raise costs to
about $18.5 million ($9 million discounted to present value)
a year, but could prevent as many as 305 cases of mental
retardation each year and increase the savings of lifetime
care costs to about $437 million ($78.5 million discounted
to present value).
     Although the concept of relating benefits to costs is
simple, its actual application is complex and difficult. The
major benefit usually cited in preventing ·retardation is the
avoided costs of caring for the retarded individual. Another
factor that should be considered, however, is the benefit to
society of having an individual who is not retarded but would
have been without the program. These benefits accrue contin-
uously over his or he~ lifetime, taking different forms and
affecting different sectors of society such as: reduced un-
employment, reduced wel~are payments, increased job produc-
tivity, and increased tax revenue. We did not analyze the
latter benefits because of the inherent difficulties in meas-
uring their monetary value. For the same reason, we did not
consider the savings in human suffering associated with avoid-
ing retardation. We recognize, therefore, that the benefits
of screening are understated in our analysis.
        The details of the analysis are shown on the following
page.


l/As noted above, newborn screening programs for PKU are
- already in operation in most States. Therefore, much
  of the costs and savings shown are already being realized.




                                29
    --

           --~.---:~==---=--=------                                                                                                                                      ---
                                                                                                                               "-"'- _"--::::::C-::_7_.;"-~~~~-=--~-=--=--·-          --
                                                                                                                                                                             -=---~=~='""'-::      "==~~
                                                                                                                                                                                            -.:_o=,-
                                                                                                                                                                                                                ---     -~---:----·-




                                                              Estimated cost of                          Estimated savings of lifetime care costs
                                                                                                      -Estirnatea-----~--~--------------~---~----
                                                           screening and treatment
                                        Projected    ~~~~--EIIetirne-treatrnent-Cost                   percentage                Projected lifetime
                                                                  ~-~---~------Present
                                          annual                                                      retarded in    Number         cost of care
                                        occurrence    Screening   Undiscounted         value           absence of   retarded   Undiscountecr---J?resent
            Disorder                     (not~~)       (note b)       ~~ti~ate        (~~!e    d)      screen in~   (not~~)     ~stimat~         value
          Phenylketonuria                   273      $2,363,000   $     983,000   $      749,000          99           270     $189,254,000                                                     $35,939,000
         ·Maple syrup
            urine disease                    15        473,000        3,750,000          781,000           5             l           618,000                                                                320,000
          Homocystinuria                     14        473,000        1,092,000          176,000          75            11         4,177,000                                                            1, 37 8, 00-0
          Galactosemia                       42        473,000           ( c)              ( c)           34            14         6,134,000                                                            2,486,000
          Tyrosinosis                        10        473,000        1,500,000          495,000           5             l          .528,000                                                                249,000
          Histidinemia                      131        473,000           ( c)              ( c)          10             13        10,695,000                                                            l , 724 000
                                                                                                                                                                                                               f

          Hypothyroidism                    630      1,575,000        4,914,000          792,000         42            265       225,779,000                                                           36,398,000
              Total cost for
                screening                            $6,303,000       6,303,000       §__!_Ql6, QQQ
w
0             Total cost of
                screening and
                treatment                                         $18,542,000     $9,009,000

              Total lifetime
                care cost                                                                                                      $437,185,boo                                                     $78,494,ooo

         Notes:       a/Computed by dividing 1974 births (rounded to 3.15 million) by incidence estimates obtained
                      - from the National Academy of Sciences and professionals in the field of metabolic disorders.

                      b/Based on.estimated costs of screening using centralized automated laboratories. Allowance
                      - for sample collection is included in cost of PKU screening. All others represent only
                        incremental cost to add them to PKU screening.

                      c/Treatment is not considered to incur significant.costs above and beyond routine
                      - health care.

                      ~/Costs         were discounted at an annual rate of 10 percent.

                      ~/Column         2 times column 6.
     several things must be pointed out regarding our .analysis.
First, the table is o~ly a gross estimate because costs of
treatment, length and course of treatment, anticipated outcome,
or costs of care could vary significantly in each case.
Therefore, the information is presented primarily to show the
general advantages of prevention, not as a definitive analysis
of costs and savings.

     In computing the projected cost of lifetime care we used
unit costs for services reported in a 1974-75 study of the
cost of long term developmental disabilities care prepared by
an HEW contractor. These figures ranged from $11,562 to
$14,014 a year l/ depending upon the severity of retardation
and reflect a principal conclusion of that report that, given
the same level of ~ervice, the costs of care are similar
whether an individual resides in a community or in an insti-
tutional setting. l l

     Also, it should be noted that, although the cost of
screening and treatment for tyrosinosis and maple syrup urine
disease seems to be much higher than the lifetime cost of
care if the diseases are not treated, this is because about
95 percent of the children born with these diseases will die
within 3 years after birth if not treated. Similarly, it is
estimated that 66 percent of those with galactosemia would
die by age 3 without treatment. Based on these percentages
an estimated 51 children would die annually from these con-
ditions. We have not att~mpted to place a value on the loss
of human life.




l/The costs cited were costs in California. According to a
- 1974 study by the National Association of Superintendents
  of Public Residential Facilities for the Mentally Retarded,
  the median of the annual per-resident costs reported by 176
  public residential facilities throughout the country was about
  $9,500.

~/We have reviewed other studies which indicate that community
  care costs might be lower than institutional care costs. We
  recognize that the question is subject to much debate. We
  are using this study because it provided current actual costs
  developed by tracing and recording services received by re-
  tarded individuals in community care facilities compared to
  institutional costs.




                             31
i   1
        ABSENCE OF HEW DIRECTION
11
I   I
             Although HEW has been supportive of State efforts to
        improve genetic screening programs, it has not evaluated
        the States' screening programs to determine which State pro-
        grams appear to be the most comprehensive and effective or
        to identify where improvements could be made. Also, BEW has
        not aggressively encouraged States to adopt automated screen-
        ing techniques, to expand screening to include metabolic dis-
        orders in addition to PKU, or to participate with other States
        in establishing regionalized screening programs.

             HEW has funded studies of various screening techniques,
        and HEW funds support newborn screening programs in many
        States. For example, in California the newborn screening
        program is administered by the State Bureau of Maternal and
        Child Health which receives Federal monies for its administra-
        tive operations in the form of formula grants under title
        V of the Social Security Act. Similarly, the Missouri
        Bureau of Maternal and Child Health, which receives title V
        funds, oversees the screening in that State. The Missouri
        Bureau of Laboratory Services, which does most of the State's
        PKU tests, also receives Federal financial support.

             An HEW official stated that in the absence· of Federal
        law the Federal Government cannot tell States how their
        screening programs should be organized or what diseases
        should be screened. He pointed out that this is a matter
        of State discretion and is usually covered by State law.

              However, the National Sickle Cell Anemia, Cooley's
        Anemia, Tay-Sachs, and Genetic Diseases Act (42 U.S.C. 300b)
        enacted April 22, 1976, could be used to establish or encour-
        age screening for other disorders. The purpose of this act
        is to establish a national program to provide for basic and
        applied research, research training, testing, counseling,
        and information and education programs with respect to gene-
        tic dis~ases, including sickle cell anemia, Cooley~s anemia,
        Tay-Sachs disease, cystic fibrosis, dysautonomia, hemophilia,
        retinitis pigmentosa, Huntington's chorea, and muscular
        dystr.ophy. The metabolic disorders discussed in this chapter
        are not required to be included in the program developed
        under this legislation. However, the legislation does permit
        inclusion of genetic disorders in addition to those specified.




                                    32
      As discussed on pages 24 to 26 many State screening
programs appear to be less than effective in screening all
newborns.   To the extent that children are born with these
diseases and are not identified and treated--Federal, State,
and local governments must provide treatment and care for
those who became retarded.   In addition, there is the un-
necessary waste of lives and human suffering.   Federal pro-
grams_, such as Supplemental Security Income, Medicaid, and
other programs of the Social and· Rehabilitation Service
are especially affected; they must provide lifetime support
or rehabilitation to individuals whose retardation might
have been prevented.

CONCLUSIONS

     Newborn screening for metabolic disorders and treatment
of the cases identified can help prevent mental retardation,
reduce human suffering, save lives, and avoid substantial
costs of lifetime care for retarded persons.   More can be
done to improve and expand newborn screening programs. There
has been an absence of aggressive Federal direction in the
design, organization, or operation of newborn screening pro-
grams.  The Federal Government stands to benefit directly
from aggressive, comprehensive efforts by avoiding costs
to various HEW programs for the care, treatment, and rehabil-
itation of persons who, without screening and treatment,
would become retarded.   Since HEW is currently developing
regulations and guidelines for implementing the National
Sickle Cell ~nemia, Cooley's Anemia, Tay-Sachs, and Genetic
Diseases .Act, we believe that consideration should be given
to using that legislation as a vehicle to implement the fol-
lowing recommendations.

RECOMMENDATIONS

     We recommend that the Secretary of HEW help improve new-
born screening by:

    --Evaluating State screening programs to identify those
      which are not effective and provide them with necessary
      assistance.

    --Encouraging and supporting expansion of newborn screen-
      ing to include treatable metabolic disorders in addition
      to PKU.

    --Encouraging and assisting States to cooperate to es-
      tablish cost-effective regionalized metabolic screening
      programs.

                            33
AGENCY COMMENTS AND OUR EVALUATION

     HEW agreed with our recommendations and pointed out several
actions it was taking to implement the recommendations including
addressing the need for newborn screening in its implementation
plan for the National Sickle Cell Anemia, Cooley's Anemia, Tay-
Sachs, and Genetic Diseases Act.

     We believe the HEW actions are responsive to our recom-
mendations and should result in considerable improvement in the
coverage and cost effectiveness of infant screening programs for
metabolic disorders.
                         CHAPTER 4

            IMPROVING PRENATAL CARE TO REDUCE

             PREMATURITY AND LOW BIRTH WEIGHT

     comprehensive prenatal care can help prevent low birth
weight and prematurity, thereby xeducing the incidence of
mental retardation. However, many women receive no prenatal
care or do not obtain prenatal care until very late in their
pregnancy.

     HEW supports State prenatal care programs through title V
of the Social Security Act. Health officials in each State
we visited said the need for additional prenatal care was a
significant health problem. However, in these States, the
extent of the need for prenatal care, the location of those
areas most in need, and the impact prenatal care programs
have on reducing mental retardation have not been sufficiently
analyzed.                   '

     In addition, HEW has not evaluated the State programs to
assess their impact on the population served or to insure that
resources are being applied most effectively.

INADEQUATE PRENATAL CARE IS LINKED TO
PREMATURITY AND MENTAL RETARDATION

      Many authorities believe that mental retardation caused
by organic factors is best prevented by continuous, comprehen-
_sive, high quality prenatal careo Comprehensive prenatal care
allows the physician to:

     --Detect and manage chronic disease in the mother, such
       as diabetes, thyroid deficiency, PKU, etc.

     --Detect and treat infections and be alert for exposure
       to viral disease such as rubella.

     --Use prenatal fetal diagnosis to detect various genetic
       disorders.

     --Monitor the course of Rh blood type incompatibility.

     --Detect and treat poisoning and help prevent the use
       of harmful substances during pregnancy~   Chronic
       alcoholism or drug addiction are of particular con-
       cern as potential causes of fetal damage.




                             35
       --Encourage optimal maternal nutrition.

       --Lessen the chances of a premature birth.

     More extensive treatment is given elsewhere in this re-
port to reducing mental retardation by increased preventive
measures in infections, genetics, Rh disease, and lead poi-
soning. With regard to nutrition, all the programs we visited
which provided prenatal care either included nutrition educa-
tion and counseling or were affiliated with other nutrition
programs, such as the Department of Agriculture's Women, In-
fants, and Children Supplemental Food Program.  In this chap-
ter we are concentrating on the need for additional prenatal
care to reduce mental retardation by reducing prematurity and
low birth weight.

     HEW officials and other authorities have reported that,
although there are undoubtedly other factors, insufficient
prenatal care can contribute to low weight or premature births.
It is generally accepted that increased prenatal care will
decrease prematurity and hence mental retardation.


     Data compiled by the National Center for Health Statistics
for 42 States and the District of Columbia for 1973 showed
that 21.1 percent of the babies born to women who received
no prenatal care weighed 2,500 grams or less. 1/ The rate
of low weight live births for all women was 7.5 percent.
These statistics also showed that the rate was 12.5 per-
cent for blacks; 16.5 percent for women under 15 years of
age; and 10.l percent for women 15 to 19 years of age.

     The President's Panel on Mental Retardation in its 1962
report stated that (1) very small premature babies are more
likely to be mentally retarded (they used a figure of 26.3
percent for those under 1,500 grams compared to 1.6 percent
for full term) and (2) there is a greater rate of prematurity
among mothers having little or no prenatal care. The Panel
also stated that

       "Prevalence of mental retardation tends to be heavily
       associated with lack of prenatal care, prematurity,
       and high infant death rates. Women who do not have
       prenatal care are approximately three times as likely
       to give birth to premature babies as are women who



!/   About 5-1/2 pounds


                              36
    receive adequate prenatal care, and very small
    premature babies are about 10 times more likely
    to be mentally retarded than are children of normal
    births."
     In a special report to a subcommittee of the House Appro-
 riations Committee as part of its fiscal year 1975 budget
3ustification, HEW reported that "Researchers have found low
birth ~eight to be ~ very importa~t factor in stillbirths, in
neurological abnormalities, and slow intellectual development."
     In fiscal year 1974, 778 children were diagnosed as re-
tarded by mental retardation clinics because of prematurity.
This represented 5.9 percent of 13,173 new·cases diagnosed
as retarded by the clinics that year.
HOW EXTENSIVE IS THE PROBLEM?
     National Center for Health Statistics data obtained
from 42 States and the District of Columbia showed that, in
1973, about 202,000 of the 2.7 million live births weighed
2,500 grams or less.  In the States we visited, low birth
weight is a significant problem. In California, about 19,200
babies born in 1973 weighed 2,500 grams or less; in Georgia
about 8,300 babies born in 1974 weighed 2,500 grams or less;
and in Missouri about 5,200 babies born in 1974 weighed
2,500 grams or less.

Many women do not receive
sufficient prenatal care
     Authorities recommend that women visit a physician during
the first trimester of pregnancy and regularly thereafter.
National and State statistics indicate that many women are
giving birth to babies without having received sufficient
prenatal care. According to the National Center for Health
Statistics, about 37,600 women who gave birth in 1973 received
no prenatal care and another 60,700 did not get prenatal care
until their eighth or ninth month of pregnancy. Of those who
received no prenatal care, 21.1 percent gave birth to low birth
weight babies.
     In California, about 3,800 women who gave birth in 1973
were reported to have received no prenatal care and another
13,500 got prenatal care only in the. last 3 months of their
pregnancy. These women represented 5.8 percent of the total
births that year. Similarly,- in Missouri, about 4,500 of the
70,300 women giving birth in 1974 were reported to have




                                37
received no prenatal care. In Georgia, 12,400, or 12
percent, of all births were to women who received no
prenatal care.
FEDERAL AND STATE PRENATAL CARE PROGRAMS
     The maternal and child health program under title V of
the Social Security Act is the major Federal resource for
providing basic preventive maternal and child health services,
including prenatal care, to persons in economically depressed
areas. Beginning in fiscal year 1975, each State was required
to have a program of projects providing services to mothers
and children, including maternity and infant care. Prenatal
care is one of the services provided under maternity and in-
fant care projects.
      In Missouri, the State maternal and child health services
program included:
     --Three maternity clinics providing services to Jackson
       County and the cities of Joplin and Springfield.
     --Two maternity and infant care projects providing pre-
        natal care in the city of St. Louis and in St. Louis
        County. The St. Louis city health department project
        provides services to approximately 1,200 maternity
        patients and 2,200 infants annually. The project
        operated by the St. Louis County health department
        serves approximately 400 maternity patients annually.
        The county project discontinued services for infants in
       1973 because of limited funds.
     --85 health units providing maternal nursing services
       along with other health services.
     --15 full- or part-time public health nurses :providing
       maternal health services~
     --Local public health nurses providing expectant parent
       classes in about 20 counties.
     --Prenatal letters providing health information to clients
       enrolled by physicians, community clinics, or public
       health facilities.
     In 1975 the Missouri legislature established a Bureau
of Mental Retardation Prevention, directed by a committee of
medical specialists and hospital administrators to provide



                             38
services to high-risk women and high-risk infants.  Initial
funding for the Bureau was limited.  However, State officials
believed this program will have a significant impact when it
is fully operational.

     California's department of health supports a network of
maternal and child health clinics using a combination 0£ State
and Federal funds.  The county health departments have admini-
strative responsibility for these clinics.  In addition, the
state department of health funds, through contracts,

     --prenatal and child health services to high-risk
       populations,

    --maternal and child health services to the rural poor
      and farmworkers, and

    --public information and education on maternal and child
      health.

There were also three federally funded maternity and infant
care projects in the State.

     Georgia had two federally funded maternity and infant care
projects. One was operated by Grady Memorial Hospital in Atlanta;
the other by the health department in Richmond County.  Together
they served 16 of the State's 159 counties. Georgia was also
funding its own program of care for medically indigent high-risk
pregnant women and infants not eligible for Medicaid.

EXTENT OF UNMET NEED FOR PRENATAL
CARE HAS NOT BEEN DETERMINED

     The guidelines for maternal and child health services
programs of projects published by HEW in September 1976 rec-
ognize that many women in low-income families receive little
or no prenatal care. The guidelines provide that a State
plan for maternal and child health services should indicate
the overall nature and extent of the need for such services
throughout the State.  In selecting areas to be served by
maternity and infant care projects, the guidelines state
the following factors should be considered: vital statistics,
social and economic indexes, and demographic data. An essen-
tial element is the number of women reportedly receiving
inadequate or no prenatal care.   In the States we reviewed,
this need has not been adequately analyzed.




                            39
     In Missouri no studies had been made to identify the
extent of unmet need for prenatal care or the areas of great-
est need.  There was no information on where pregnant women in
need of care were located in the State nor on the extent of
prenatal care services.

     Birth certificates in Missouri showed the trimester of
pregnancy during which the mother began receiving prenatal
care and the number of prenatal visits.  However, the only
summary of the data was the maternal and child health services
report, which showed for 1974, 4,049 births involving "inade-
quate prenatal care."

     State officials were not sure what "inadequate prenatal
care" actually represented.  We were referred to an ex-employee
of the State department of health who prepared the report.
He told us he had used World Health Organization criteria
in part in summarizing information from the birth certificates
into the category "inadequate prenatal care," but he commented
that criteria used were not adequate and that the report was
incomplete.  At the time of our review, the Missouri Bureau
of Mental Retardation Prevention was developing a program to
identify and serve women who were at high risk of having a
premature or mentally retarded baby.

      In California, statistics were available showing, by
county and by health district, the incidence of prematurity
and low birth weight, the number of women not receiving
prenatal care, and, for those women who received prenatal
care, the trimester of pregnancy during which care was begun.
In addition, at the county level, statistics were available
by health district showing average family income, size of
family, ethnic composition, age distribution, live birtp
rates, infant fetal and neonatal death rates, number of women
receiving prenatal care, and marital status of pregnant
women served.   The information, when properly evaluated, may
indicate the overall nature, extent, and areas of nBed for
maternity services.   However, State officials were unclear as
to how this data is used in planning for prenatal care services
or evaluating the need for expanded services and were not
aware of any recent studies of the unmet need. We noted that
some of the data we were provided was 3 to 4 years old and
were told that more recent data had not been compiled.

     The Director of the California Bureau of Maternal and
Child Health indicated that the Bureau does not have the
capability or resources to identify the population presently
served or those needing services and not receiving them.



                             40
similarly, an official at one maternity and infant care proj-
ect in California said its heavy patient load has prevented
implementation of an active outreach or casef inding program.
     The State of Georgia was developing a health care
tracking system for prenatal care services. At the time of our
review, statistics from birth certificates, death certifi-
cates, and certificates of abortion were being computerized
and could be summa~ized by county, health district, and
individual hospital. The first printout showing the num-
ber of women in Georgia who received no prenatal care was
prepared in October 1975 using 1974 data.
     The State was also developing a new information collection
system whereby health districts and counties will furnish
monthly performance reports to the Health Services Research
and Statistics Branch which will compare accomplishments
to needs for various health programs, including prenatal
care. The branch chief told us that Georgia will be able
to use the data to establish priorities for allocating
prenatal funds. However, we were told that the system will
not be in full operation for about 2 years and that the State
had not yet determined how it will establish priorities or
allocate funds once the system is operational.
PROGRAMS HAVE NOT BEEN EVALUATED
AS TO THEIR IMPACT ON PREVENTING
MENTAL RETARDATION
     Headquarters and regional officials of HEW's Bureau of
Community ·Health Services told us that they had not evaluated
the effect of maternity and infant care projects on preventing
mental retardation. According to the mental retardation
specialist in the Bureau's Office of Special Concerns it is
difficult to document the extent of prevention of mental re-
tardation because it would take several years of followup to
prove and maternal and child health projects do not have
the resources to perform such followup.

     HEW regional officials responsible for monitoring maternal
and child health programs told us that their evaluation of the
impact of programs in the States we reviewed had been minimal.
For example, a region 7 official told us that no evaluations
had been made of the impact of programs in Missouri. HEW's
review of the State plan was primarily geared toward determining
if it complied with Federal regulations. A region 9 official
told us that due to shortages of staff, monitoring of California's
Programs had been limited to sending questionnaires to the



                             41
administering agencies; the responses had not been evaluated.
Region 4 officials told us that the last plan Georgia submit-
ted to the region was in 1972.   They said that checklist
evaluations had been' made subsequently, but they could not
locate the certifications.

     Similarly, the States we visited had not assessed the
impact of prenatal care programs on preventing mental retar-
dation.  For example, officials of the Bureau of Maternal
and Child Health in California told us that no studies had
been made of the impact of their programs on mental retar-
dation.  One official said that a major problem in evaluat-
ing the impact of these programs has been poor recordkeeping
by individual projects, especially the maternity and infant
care projects.  Another State health official said the short-
age of funds was responsible for limited program monitoring
and evaluation.  He also pointed to a need for more controlled
longitudinal studies to better identify the exact link between
good prenatal care and prevention of mental retardation
before the impact of prenatal care programs can be effectively
determined.

CONCLUSIONS

     Inadequate prenatal care has been linked to premature
and low weight births which are in turn linked to mental re-
tardation.  National and State statistics indicate that many
wo~en still receive insufficient prenatal care, even though
Federal and State programs have been established to reach
persons in economically depressed areas who might not other-
wise receive such services.  The extent of need for additional
services is unknown because neither HEW nor the States have
adequately analyzed {l) the extent of the current needs for
prenatal care, {2) the areas of greatest needs, or {3) the
effect of existing programs.

RECOMMENDATION

      To be able, to establish priorities for allocating pre-
natal care funds most effectively and to the areas of great-
e~t need, we recommend that the Secretary of HEW direct the
Bureau of Community Health Services to evaluate the State
procedures used to determine needs for prenatal care
services and insure that State plans outline a clear
strategy of how to reach the population in greatest need.




                             42
~ENCY   COMMENTS
     HEW concurred in our recommendation and pointed out
that based on a State-by-State assessment of high infant
mortality and morbidity distribution, the Bureau of Community
Health Services has initiated State-wide Improved Pregnancy
outcome projects in nine States. An additional nine States
are expected to be added in fiscal year 1977. HEW advised
us that the Health Services Administration was aware that
in'many States the unmet need for prenatal care has not been
sufficiently analyzed and that this was an element of its
Child Health Strategy for ftscal years 1978-82.




                             43
                         CHAPTER 5

              IDENTIFYING PERSONS IN NEED OF

              GENETIC TESTING AND COUNSELING

     Chromosome abnormalities are estimated to account for
about 16 percent of the clinically caused cases of mental
retardation.  A 1974 study reported that over 10 percent of
the residents of public residential facilities for the men-
tally retarded reporting such information were diagnosed as
having a chromosome abnormality.  Down's syndrome (mongolism),
one of the most common of such abnormalities, appears in about
1 in 650-1,000 births and, at one time, accounted for 15 to
20 percent of the institutionalized mentally retarded.

     Since treatment of chromosome abnormalities is limited,
the main role of medical genetics is prevention through genetic
counseling and testing.  Persons with chromosome defects, or
at high risk of having children with defects, can be iden-
tified and counseled~   Additionally, chromosome abnormalities
can be diagnosed in an unborn child, thus allowing the parents
to make an informed decision about continuing the pregnancy.

     However, it appears that only a small portion of those
who could benefit from genetic services receive them. Neither
HEW nor the States we reviewed have made efforts to assure
that persons needing the service or at risk are screened or
served.  In addition, the geneticists we interviewed generally
believed that only a small percentage of those who obtain
services are from lower socioeconomic groups.

     Federally funded family planning programs, and pos.sibly
other Federal programs, might be a good means of providing the
needed outreach and identification and for serving lower income
families.  However, the family planning programs in the States·
we reviewed generally did not attempt to identify families
in need of genetic services.  The federally funded maternity
and infant care projects we visited were referring high-risk
clients for genetic services.

     Most geneticists we interviewed believed that if family
planning programs were to identify and refer clients in need of
genetic counseling and testing, existing clinics and laborator-
ies could meet the demand.   However, PCMR and Bureau of Com-
munity Health Services -0fficials advised us that, for the lab-
oratories to meet the demand, additional capacity, primarily




                            44
equipment, would be needed.  CDC officials were of the opinion
that the laboratories would be overwhelmed.  The extent to
which existing clinics and laboratories could meet the demand
would depend on the number of clients referred and the geo-
graphic area.

CHROMOSOME ABNORMALITIES
~DETECTABLE


     Some chromosome abnormalities are passed on from either
one or both parents to the child.  A chromosome disorder may
also appear in a child because of a g~net~c accident or damage
caused by drugs or radiation even though the parents are gene-
tically normal.  In both instances, prevention consists pri-
marily of attempting to forestall the birth of affected infants,
but the form of prevention varies.  Inherited disorders can
be prevented by identifying carriers of traits and informing
them on the odds of having an affected child.  Disorders
that occur by genetic accident or damage must necessarily
be diagnosed after conception.

     A recently developed procedure has made it possible to
make a firm determination about certain defects well before
birth.  The procedure, called amniocentesis, entails with-
drawing a small amount of the amniotic fluid which surrounds
the fetus in the uterus.  The fluid, containing fetal cells
which can be cultured and evaluated, provides information
on the chromosomal make up of the unborn child.   If a defect
should be identified and the physician knows about it early
in pregnancy the doctor is in a better position to minimize
damage through prompt action at or soon after birth.   The
impact can be minimized by overcoming the physical problems
(cleft palate, congenital heart defects, etc.).   In addition,
certain programs can reportedly minimize the retardation in
Down's syndrome children through ititensive infant ~timulation
and early intervention, using methods similar to those dis-
cussed on page 82.  Parents, too, can make an informed judg-
ment about continuing the pregnancy.

     The procedure is useful not only for detecting disorders
that arise by reproductive accident, but is also a valuable
tool for family planning where one or, rarely, both parents
carry a genetic disorder.  Because of the availability of
amniocentesis, such parents can be less apprehensive when try-
ing to have a baby.  One geneticist told us that his referrals
are primarily from abortion clinics.  His clients are women
who have previously borne children with genetic disorders and
now, ?gain pregnant, are seeking an abortion rather than



                             45
risk having another defective child.  In the vast majority
of cases where amniocentesis is performed, the infant turns
out to be normal. Thus, many children have been saved that
may otherwise have been aborted.

     In October 1975, the National Institutes of Health re-
ported on a national study which compared 1,040 women who
chose to undergo amniocentesis with a matched control group
of 992 who didn't. The study showed that the diagnostic pro-
cedure itself poses no additional risks to pregnancy and that
the procedure was more than 99 percent accurate. The project
director recommended the procedure for women over 35 and for
those with a family history of genetic disorders.

     As discussed on page 32, the recently enacted National
Sickle Cell Anemia, Cooley's Anemia, Tay-Sachs, and Genetic
Diseases Act could have an impact on providing genetic coun-
seling and testing services. However, the program has not yet
been implemented.

SOME HIGH-RISK INDIVIDUALS
ARE IDENTIFIABLE

      Essential information needed for adequate genetic coun-
seling includes a detailed family h~story, a specific diag-
nosis, and knowledge of the inheritance patterns of the
disorder. Diagnosis of the specific disorder requires chromo-
some· analysis using one or more of the available techniques
of chromosome study. A complete chromosomal analysis, not
including amniocentesis, costs up to $300; amniocentesis
can cost as much as $300 more. Due to this high cost, it is
not practical to screen the population at large.   However,
certain "high-risk" individuals can be identified through
less sophisticated, inexpensive techniques such as inter-
view or visual observation.

     For example, families with a previous child having a
chromosome abnormality are likely candidates for genetic
studies and counseling. Other indications of high risk
for a chromosome defect include
     --mother over age 35,

     --two or more congenital malformations,

     --mental retardation,

     --failure to develop secondary sexual characteristics, or

     --multiple miscarriages.


                                46
If an individual is identified as having one or more of these
factors, he or she can be referred to an appropriate facility
for more in-depth study and counseling.

     There are also indications of high risk for the types
of chromosomal abnormality that arise as a genetic accident
in a particular conception; for example, maternal age is a
high risk factor for Down's syndrome. As a woman's age
increases, so does the chance that she will bear a Down's
syndrome child as a result of reproductive accident.
The chance of a 20-year-old woman having a Down's syndrome
baby is only about 1 in 2,000, but by 35 the frequency is
about 8 times greater. 1/ Although only 7 percent of all live
births in the United States are to mothers 35 or older, they
contribute one-third of the estimated 7,000 Down's syndrome
babies born each year.

CURRENT PREVENTION
EFFORTS ARE LIMITED

     In the States we visited, identification and counseling
of high-risk families appeared to be limited.  In California,
for example, the exact extent of genetic testing being done
was not known, but geneticists at major medical centers esti-
mated that only about 5,000 to 6,000 chromosome analyses are
being done statewide each year.

     In Missouri, we could not determine how many people were
receiving or in need of genetic services, but we found that most
technical genetic services were primarily limited to seven
genetic service providers in the. State. Only one laboratory
in the State was analyzing amniotic fluid to detect chromosome
defects.  The State has 11 regional centers for the develop-
mentally disabled where diagnosis, counseling, and referral
services are provided.  However, these services are directed
primarily to reducing the impact of mental retardation,
rather than prevention.

      In .Georgia, the Director of the State's maternal health
program told us that only three facilities were providing
genetic screening and counseling.

     In all three States we were told that that the testing
that is being performed is generally limited to families where



!I   We were advised by a genetic expert in November 1976 that
     recent statistics indicate that the frequency of occurrence
     in women over 35 may be greater than previously estimated.


                              47
there is already a retarded child or suspicion of a genetic
defect.  For example, all but 20 of 1,060 chromosome studies
done at the Georgia Retardation Center during the 4 years
ending October 30, 1975, were for mentally retarded patients
and their families.  Even so, it has been estimated that less
than 5 percent of the families of the retarded receive genetic
counseling.

     The genetic service providers we contacted generally per-
formed testing and/or counseling for clients referred to them
by other sources, usually private physicians, hospitals, or
mental retardation clinics; they did not attempt to identify
high-risk individuals.  They said they did not have the re-
sources or the time to go out looking for business.  They
usually got all they could handle through referrals.

     We questioned geneticists in the States we visited about
the socioeconomic status of most families obtaining genetic
services.   None of these geneticists had any comprehensive
data, but they agreed that, in general, most persons present-
ly receiving genetic services are from upper socioecono~ic
groups.   They agreed there is a need to make genetic services
more readily available to the lower socioeconomic groups.

FAMILY PLANNING PROGRAMS COULD IDENTIFY
HIGH-RISK CLIENTS BUT
GENERALLY DO NOT

     Officials in Missouri, Georgia, and California stated
that, if mandated and funded, family planning clinics would
be a good vehicle for providing referrals for genetic services.
Family planning programs serve many women for whom genetic
information would be useful.  Also, many women served are
high risk for genetic disorders (an estimated 7.5 perc~nt are
35 years of age or older) and most are from low-income families.

     In fiscal year 1974, 3.4 million women were served in
organized family planning programs in the United States. One
family planning official in Los Angeles said that more women
come in contact with family planning programs than any other
health service.  A substantial proportion of the women seeking
family planning services are interested in obtaining informa-
tion on optimal child rearing and child spacing.  For example,
about 44 percent of the women seen by family planning clinics
in Los Angeles County who responded to the question, indicated
that they pla~ned to have children. Genetic counseling could
provide information relevant to such plans for women identified
as being possible carriers of chromosomal abnormalities.



                             48
     In addition, a Los Angeles family planning official said
many women come to family planning clinics seeking information
on abortion. This official was convinced that many women are
seeking abortions because they have had a previous child
with a genetic problem. If these women were specifically
identified and provided initial genetic information before
being referred to an abortion clinic, the abortion might
be ~voided if the fetus was found to be normal.
     Many women served by £amily planning clinics risk
having children with Down's syndrome because of the women's
age. Nationally, about 7.5 percent of the women served by
organized family planning programs in 1974 were 35 years
of age or older. These women could be advised of the risks
and told of the available tests in the event they decide to
have children.
     Finally, family planning programs would be a good vehicle
for reaching lower socioeconomic families with genetic screening
services because most women served in family planning programs
are from low-income families. HEW estimated that in fiscal
year 1974, 54 percent of the women served by organized family
planning programs were members of families with income at or
below the national poverty level; an estimated 73 percent
had annual incomes at or below $7,557--150 percent of poverty
level for a family of four ..
     Federally supported family planning programs were operating
in each State we reviewed. However, the programs generally did
not consider it part of their mandate to identify families
needing genetic services. State family planning officials in
Georgia and Missouri stated that although identifying persons
at high risk for genetic disorders is not currently one of
their mandates, the family planning clinics would be an ideal
vehicle to provide this service because of their contact with
high-risk people.
     California standards for family planning services
provide, in part, that the medical services that must be
provided to each patient include (1) obtaining a complete
obstetrical history, including complications of any preg-
nancy, and (2) a relevant family health history, including
any genetic problems. However, the head of the State
family planning programs told us that the standards are only
advisory, not.mandatory, and the actual services rendered
are totally within the treating physician's discretion.




                            49
      Some family planning services in California were af-
filiated with medical centers as part of a system of inte-
grated comprehensive health care. Officials at some of these
programs indicated that their clients received genetic services
as part of that care. However, we ~oted that the medical
forms used by the family planning services.did not provide
for collecting information which would indicate a high risk
for a genetic problem other than the patient's age. Also
the clinic had no procedures to identify genetic problems,
and no records were available on patients referred for genetic
studies. One clinic did require that all women over 35 be
under the care of a physician.
      Eight out of nine geneticists we interviewed told us
that they believed existing genetic clinics and laboratories
if properly funded had adequate capacity to absorb additional
de.mand for services that might be created if family planning
programs performed initial genetic screening and referred
clients for services. The National Academy of Sciences has
reported that a shortage of genetic counselors is also a
hurdle to expanded screening, but some efforts are· underway
to alleviate this shortage. According to the Academy, the
role of the primary physician makes him the ideal counselor.
The Medical Director of the California Department of Health
Developmental Services Program, Treatment Services Division,
told us that about three-fourths of all counseling required
could be done by pediatricians and obstetricians once they
are provided the laboritory results and interpretative in-
formation. In addition, some schools have begun to train
nonphysician college graduates to be genetic counselors.
     HEW regulations do not specify whether genetic coun-
seling should or could be included in title V family plan~
ning projects. Title X guidelines includ~ genetic counseling
as an optional service.
CONCLUSIONS
     Mental retardation can be reduced through genetic screen-
ing and counseling, but only a small proportion of those who
could benefit from such services appear to be receiving them.
Providers of genetic services generally perform little out-
reach and serve primarily higher income groups.
      Since federally supported family planning programs pro-
vide services to a large number of women from lower socio-
economic families, they seem to be a good vehicle for iden-
tifying high-risk families and individuals in the lower
socioecono"mic groups. Other Federal programs, such as
community health centers, might also be able to provide
similar services.
RECOMMENDATIONS
     We recommend that the Secretary of HEW:

     --Direct federally supported family planning programs
       to routinely include screening for individuals
       who are "high risk 0 for genetic disorders and refer
       such individuals to diagnostic and counseling ser-
       vices.
     --Monitor the demand on existing genetic resources
       created by outreach and develop strategies for
       increasing resources as needed.
     --Explore how other Federal programs could better be
       used to prdvide genetic screening and services.

AGENCY COMMENTS AND OUR EVALUATION
     HEW agreed generally with our recommendations but stated
that it could not mandate universal screening until more
capacity for effective screening and counseling is available.
The Department 9tated that the demand on existing genetic
resources at present exceeds their capacity.
      With respect to monitoring .the demand on existing gen~tic
 resources, HEW stated that the continued monitoring of the
demand is most important in implementing our recommendations
 to assure that the demands generated by any outreach and
 additiohal screening can be dealt with by the centers. Both
 the child health strategy and the genetic diseases implementa-
.tion plan stress statewide networks with the State health de-
 partment playing the key role in establishing linkages between
 screening and provider programs. HEW advised us that with
 the establishment of a focal point in HEW for the mental
 retardation prevention effort, it will be possible to work
out a mechanism to include these activities in other Federal
 programs.
     We agree with HEW that it cannot mandate screening and
referral of high-risk persons for genetic counseling and
testing if the necessary diagnostic and counseling services
are not available. However, it should mandate screening and
referral where the services are available.



                             51
                         CHAPTER 6

   IMPROVING IMMUNIZATION LEVELS FOR RUBELLA AND MEASLES

      Federal programs can improve national surveillance data
and help prevent mental retardation by helping to raise im-
munity levels for rubella and measles.   The Medicaid Early
and Periodic Screening, Diagnosis, and Treatment program
could collect and provide immunization surveillance data to
the Center for Disease Control and increase immunization
levels among the children served; Head Start programs could
collect and provide CDC with immunity level data on the
childr'en they serve; and federally funded family planning
programs could screen its women clients and provide immuni-
zations to those in need.

     As indicated on page 4, rubella and measles can cause
mental retardation,. CDC estimates that about 1 of every 1,000
reported cases of measles results in brain inflammation and
that about 25 to 35 percent of those cases result in mental
retardation.  CDC has also estimated that the 1964-65
rubella epidemic caused about 1,800 cases of mental retar-
dation, about 2,200 deaths, about 6,300 miscarriages, left
about 12,000 children deaf or deaf-blind, and caused 5,000
women to seek therapeutic abortions.

     In the 1960s vaccines against both these diseases be-
came available and since then the incidence of each disease
has dropped dramatically. However, CDC reports that cases
are still occurring and that immunity levels are unnecessar-
ily low, particularly among preschool children, giving rise
to the possibility of a major epidemic.

     From a national perspective, two elements are necessary
to effectively combat these diseases: comprehensive data on
immunity levels to pinpoint problem areas and aggressive·
immuniza~ion programs targeted at areas with low immunity
levels. However, in the past, immunity level data has not
been adequate to pinpoint problem areas, nor have va~cina­
tion programs raised immunity to acceptable levels.

     Federal funding for immunization projects has been sub-
stantially reduced since 1970 on the premise that Federal
programs, such as EPSDT, and the States themselves would be
assuming increasing responsibilities for immunizing children.
However, CDC is concerned that as Federal funds continue to be
reduced, immunization efforts will falter because EPSDT and
States are not effectively taking up the slack.




                              52
MENTAL RETARDATION CAUSED BY MEASLES
AND RUBELLA CAN BE PREVENTED

     In 1963 a measles vaccine became available for general
use in the United States.  In 1969 a similar vaccine for
rubella became available.  Since then, the primary preven-
tion approach has been to try to immunize all children. Ac-
cording to the Deputy Director of CDC's Immunization Divi-
sion, at least 95 percent of all children should be immun-
ized before they enter school.

     As of September 1975, 45 States, including the 3 we
visited, had laws or regulations requiring measles immuniza-
tion before school entry; 38, including Georgia and Missouri,
required rubella immunization before school entry.

     In addition to vaccinating school-age children, mental
retardation caused by congenital 1/ rubella can be prevented
by identifying women of child-bearing age who are not immune
to rubella and vaccinating them before they become pregnant.
It is estimated that 10 percent of all pregnant women are at
risk of contracting rubella.  A blood sample can be analyzed
to determine whether an individual has developed an immunity
to rubella.

     California has adopted this approach.  Although vac-
cination of preschool and school-age children for rubella
is strongly encouraged by State health officials, it is not
required. The State law does require, though, that every
woman applying for a marriage license have a blood test to
determine it she is immune to rubella.  If she is susceptible,
the doctor performing the test counsels her on the risks of
getting rubella during pregnancy and suggests that she be
vaccinated.  According to CDC, two other States have manda-
tory rubella screening programs.

     CDC officials stated that premarital rubella testing
programs have not been highly successful because the women
tested either did not receive the test results or did not
take action ·an them. Normally, the laboratory sends the test
results to the.doctor who took the blood sample.  In many
instances, a woman who went to a doctor solely for a premari-
tal blood test would not see him again and would not receive
the results of the test or counseling on immunization.
Another problem with premarital testing and vaccination is


I/Damage to the unborn child caused by the mother contract-
- ing rubella during the first trimester of pregnancy.
is the danger that the vaccine might cause damage if given to
a pregnant woman or if a woman becomes pregnant shortly after
immunization.

     Vaccination programs have been instrumental in prevent-
ing rubella and measles. The incidence of rubella has dropped
from over 57,000 reported cases in 1969 to about 12,000 in
1976. Measles incidence has dropped from about 385,000 re-
ported cases in 1963 to about 40,000 in 1976.  CDC estimated
that for 1963-72, vaccination programs prevented almost
24 million cases of measles, saved 2,400 lives, and prevented
7,900 cases of mental retardation, resulting in savings of
about $1.3 billion.  Despite these advances, CDC still con-
siders immunity levels to be too low; disease and unnecessary
deaths still occur.

BETTER DATA IS NEEDED ON IMMUNITY LEVELS

     A major hindrance to improving immunity levels appears
to be the absence of good surveillance datao  Without reli-
able data, health officials can identify neither the areas in
greatest need nor the States with the most successful pro-
grams, which could make their methods available to other
States.

     B~fore 1968, CDC required quarterly progress reports
in conjunction with grants-in-aid to the States to support
vaccination programs.  However, under HEW's regionalization
approach, the authority for making the grants was shifted
to HEW regional offices; CDC continued to maintain surveil-
lance data, but reporting by States became voluntary"

     CDC presently uses two principal sources of immunity
level data: The United States Immunization Survey and immuni-
zation project status reports.  However, the data collected
is considered usable only for analyzing national disease pat-
terns and trends and not for identifying States or areas
within States where immunity levels are low.

U.S. Immunization Survey

     The Bureau of the Census in cooperation with CDC con-
ducts the U.S. Immunization Survey every September. Census
collects immunization data through a supplemental question-
naire attached to the monthly Current Population Survey.
In September 1975, the sample consisted of 35,000 housing
units distributed throughout the United States.

     Although CDC feels this survey provides the most accu-
rate data available on immunity levels, it~s not extensive
enough to enable CDC to pinpoint specific States, or areas


                             54
within States, with low immunity levels which should be ·given
speGial attention. One CDC official stated that the cost of
expanding the survey ~o that it could provide enough detailed
information to pinpoint specific problem areas would be pro-
hibitive. Hence, alternative approaches are required.
     We were informed by HEW that subsequent to the comple-
tion of our fieldwork, CDC had completed an evaluation of the
survey. Recommended changes in the survey have been approved
and the Bureau of the Census has implemented the changes.
project status reports

     CDC grants support vaccination programs in each State.
CDC receives periodic r~ports on the status of these pro-
grams; the number of doses of vaccine administered are re-
ported monthly and immunity levels are reported annually.
However, CDC believes this data does not provide an accurate
indication of immunity status in a given State because (1)
the reported number of doses of vaccine administered are
only those given through public programs and not by private
physicians and (2) the reports reflect only the vaccinations
given at school entry and do not reflect children subsequent-
ly immunized.
CDC efforts to improve data

     To improve immunity level data, CDC issued guidelines ·to
the States in 1973 for assessing immunity levels. The guide-
lines call for (1) compiling data of immunity levels of each
child at school entry and (2) conducting stratified random
sample surveys of 2-year-old children. According to CDC,
the data reported by the States has improved since the
guidelines were issued, especially the school entry data,
but information on preschool children is still sparse.

     The 1975 U.S. Immunization Survey indicates that immun-
ity levels among preschool children are lower than those of
children in the 5 to 9 age group. Nationally, only two-thirds
of the childr~n between the ages of 1 and 4 are immune to ru-
bella and measles; in some areas the immunity level is as low
as 60 percent for this age group.

     In the immunity level assessment guidelines, CDC has
pointed out the advantages of surveying 2-year-olds, jn-
cluding:

    --Children should have completed their basic series
      of immunization by this age.




                              55
     --Immunization levels in 2-year-olds are indicative
        of levels in both younger and older children.

     --A large portion of data can be gathered by mail-
       out questionnaires.

     --Birth certificates, used as a sampling base, are
       easily accessible and fairly standard from com-
       munity to community.

However, for 1974 only 35 States had conducted measles and
rubella surveys of 2-year-olds and reported the results to
CDC.  CDC officials stated that under the present Federal
grant management system, State reporting is voluntary; thus
CDC cannot compel States to conduct surveys or report results.

MORE AGGRESSIVE VACCINATION
EFFORTS ARE NEEDED

     Even though most States have laws or regulations requir-
ing immunization for measles and rubella before school entry,
the U.S. Immunization Survey indicates that not enough chil~
dren are being vaccinated. CDC has not officially estab-
lished minimum levels or goals; however, CDC officials said
that an 85-percent level would normally be needed to protect
localized sections of the population from epidemics. The
level depends on disease communicability, population mobility,
and population density.  One CDC official stated that a 95-
percent level would be a reasonable measles immunity goal.
The 1975 survey showed that, nationwide, about 74 percent of
children between the ages of 5 and 9 had been vaccinated for
measles and about 70 percent for rubella; in some regions
average vaccination levels for this age group were as low as
72 percent for measles and 61 percent for rubella.

     Of even greater concern to CDC is the need to raise
immunity levels of preschool children.  In a 1974 survey,
only 4 States reported that 90 percent or more of its
2-year-olds were immune to measles and none of the 33 report-
ing States had reached a 90-percent immunity level for ru-
bella. One State reported that only 57 percent of the 2-year-
olds surveyed had been immunized against measles, and only 36
percent had been immunized against rubella.

     Our 1974 report 1/ described some of the problems
in achieving and maintaining acceptable immunization levels:


l/"Review of Selected Communicable Disease Control Efforts,"
-  B-164031(2), June 10, 1974.



                              56
     --Apathy by physicians, public health officials, and
       the general public toward raising immunization levels.
     --Inadequate enforcement of laws requiring immunization,
       especially fo~ preschool children.
     --Insufficient resources to continously operate com-
       prehensive immunization programs.
                                                                , ,I
CDC officials said that the last factor was a major cause.
     Federal immunization project grant funds have been re-
duced from $16 million in fiscal year 1971 to less than $5
million in fiscal year 1976. The reductions have been made
primarily on the assumption that the States would support
an increased share of the costs. However, increased demand
on States funds for other health care needs has precluded
this from happening.
     CDC officials expressed concern that if present reduc-
tions of Federal immunization project grant funds continue,
immunity levels will fall because States cannot take up the
slack. They cite as an example the experience with measles
in the late 1960s. Trend data shows that after grant assist-
ance was initiated in 1966, the number of reported measles
cases and deaths from measles dropped dramatically. But_when
these grants ended in 1968 and 1969, the number of reported
cases and deaths more- than tripled until the projects were
reinitiated in 1971 at which time the incidence and deaths
again declined. CDC officials estimate that about $10 to
$15 million in Federal grant funds are needed to maintain
current immunity levels.
FEDERAL PROGRAMS COULD HELP
     Certain Federal programs, in particular EPSDT, Head
Start, and family planning programs can improve surveillance
data and raise immunity levels.
Early and Periodic Screening,
D1agnoSIS; and Treatment
     Since 1972, all States participating in the Medicaid
program have been required to provide EPSTD as part of their
Medicaid programs. The screening program presents an excel-
lent opportunity to determine a child's immunization status.
In fact, screening for immunization status is included among
the Medicaid-recommended minimum elements of screening.




                                57
      However, EPSDT's reporting system does not provide
the surveillance data necessary to identify areas needing
more aggressive immunization activity. The £PSDT monthly
reports submitted to HEW show the total number of individuals
screened, but not the number screened for any particular
condition; it is not possible to determine how many children
have been checked for immunization st~tus or the immunity
levels found.   A CDC official indicated that re~orting under
Medicaid programs is based on physician billings for services
rather than being set up specifically to collect surveillance
data.

     The th~ee States we visited had EPSDT programs, but
information had not been compiled on immunity levels of
children screened, numbers of children screened for immuni-
zation status, or the number of individuals immunized under
the program.

      CDC has prop~sed two methods by which EPSDT could improve
vaccination efforts. Clinics could be directly reimbursed by
Medicaid for immunizations given to eligible children. However,
CDC would prefer that CDC and the Social and Rehabilitation
Service enter into an interagency agreement whereby EPSDT
would annually pay for, under CDC's bulk purchase agreement,
enough unit doses of vaccine to immunize the children expected
to be identified through EPSDT scre~ning in a given State.
The vaccine could then be provided to the State for distribu-
tion through its public health clinics. The agreement could
be adjusted annually based on actual vaccine usage.  According
to CDC, the proposal has not been accepted within HEW.

     The Deputy Director of CDC's Bureau of State Services
told us that one reason Federal immunization grant funds
were reduced was that EPSDT was expected to take up much of the
slack by identifying and immunizing children in need. However,
the Social and Rehabilitation Service has a policy 6f not paying
for services with Medicaid funds that could be provided free
of charge through public health.programs. Thus, the expecta-
tion has not been realized.

Head Start

    .Head Start program guidelines require that each enrollee
have a physical examination, including screening for immuniza-
tion status.  Before fiscal year 1976, Head Start projects
collected immunization data on polio, diphtheria, whooping
cough, tetanus, measles, mumps, and rubella through its
Health Program Assessment Report. A CDC official told us
that CDC had helped the Off ice of Child Development develop
this surveillance system and, in the past, had received in-
formation on immunity levels from Head Start projects.


                            58
            However, CDC no longer receives the information because
       in 1975, Head Start $topped using the Health Program Assess-
       ment Report and began a grantee self-assessment system.
       The self-assessment system calls for checking child records
       for completion of immunizations as part of the assessment
       process; however, it does not provide data on the number of
       children immunized.  It appears that some immunity level data
       could be compiled during this assessment and reported to CDC.
       CDC officials told us that they believe information from EPSDT
       and Head Start would be especially valuable as an indication
       of immunity levels among children from lower socioeconomic
       backgrounds. A Head Start official informed us that Head
       start had no system for compiling data on immunization
       levels but is attempting to develop such data through its
       management information system.

       Family planning

            Family planning programs could screen women for rubella
       susceptibility and recommend vaccination to those not immune.
       There are four advantages to using family planning programs
       for such screening.   First, organized family planning pro-
       grams reach a large number of women--about 3 million a year.
       Second, blood testing is done routinely as part of family
       planning services; the Director of the Oregon State labora-
       tory said that rubella susceptibility testing could probably
       be added for about a dollar.   Third, the risks of a woman
       becoming pregnant shortly after immunization are minimized
       by the fact that in visiting the family planning program, she
       is probably seeking contraceptive services.   Finally, family
       planning clinics could also reach women who could not be
       reached by premarital screening programs .
.he
.r'         Rubella susceptibility testing was not being done by
·ing   family planning programs in California and Georgia.   In Mis-
       souri, we could not determine what was being done statewide
       but rubella testing was not conducted at the two clinics
       we visited.  HEW regulations do not specify whether rubella
       susceptibility testing should or could be included in title
       V family planning projects.  Title X guidelines do authorize
       such testing. We were told that family planning programs
       in Oregon routinely screen women for rubella immunity, and,
       the director of the State laboratory thought the program was
       generally successful.

       CONCLUSIONS

            Mental retardation caused by rubella and measles can be
       prevented by aggressive vaccination programs.  However, since



                                    59
rubella and measles immunization levels are less than consid-
ered necessary, expanded efforts to immunize children and to
test women of child-bearing age for susceptibility to rubella
are needed. Better data is needed on immunity levels in local
areas.  Certain Federal programs, such as EPSDT, Head Start,
and family planning could improve surveillance data and raise
immunity levels.

RECOMMENDATIONS

     We recommend that the Secretary of HEW:

     --Examine the alternatives of expanding CDC support
       of State vaccination programs or making arrangements
       between CDC and the Medical Services Administration
       that will enable EPSDT to more effectively support
       national and State immunization activities.

     --Expand EPSDT requirements to specifically require
       screening for immunization status and reporting of
       the number screened and immunized.

     --Require Head Start projects to develop data on the
       results of their immunization screening.

     --Require federally funded family planning and other
       appropriate programs to include rubella susceptibility
       testing and immunizations, where appropriate, among
       their routine services.

AGENCY COMMENTS

     HEW agreed with our recommendations. We were advised that
the draft of a proposed revision to the EPSDT penalty regulation
will require that the immunization status of each Medicaid
recipient be determined at the time the screening test is
performed. HEW is revising the EPSDT reporting requirements
to include reporting on inadequate immunization status found
through screening.

     The Department also advised us that it has proposed
legislation to convert EPSDT to a Comprehensive Health Assess-
ments and Primary Care for Children Initiative which will
address these issues. This has been introduced as H.R. 6706
and S. 1392.
                          CHAPTER 7

       INCREASED SCREENING TO DETECT LEAD POISONING

     More widespread screening is needed to determine the
extent of the lead poisoning problem. A recent breakthrough
in testing techniques has made it possible to inexpensively
expand testing.  However, except in certain known high-risk
areas, lead poisoning is not a recognized problem, and
screening is not routine. Even Medicaid·' s EPSDT program,
which strongly encourages lead screening, apparently does
not perform such screening on a large scale; reporting re-
quirements are inadequate to determine the extent of screening
and the results in locales where screening is going on.

     As indicated in chapter 1, lead is a lethal poison that
can result in death, mental retardation, and other handicaps.
Children between 1 and 6 years ·of age are its main victims.
The impact of lead poisoning as a cause of mental retardation
and other handicaps can be reduced by screening children to
detect elevated lead levels, treating those identified, and
eliminating sources of or exposure to lead.

     Lead poisoning has generally been associated with chil-
dren eating lead-based paint chips.  Steps have been under-
taken to reduce lead poisoning hazards, including urban
renewal and laws restricting lead-based paint.  Recent studies
show, however, that other sources of lead, such as airborne
emissions from automobiles or smelters, may be causing exces-
sive lead absorption in other segments of the population.

RECOGNIZING THE PROBLEM

     A major hurdle to preventing and treating lead poisoning
is the general lack o·f a war enes s of the conditions and the
difficulty of recognizing it in children.      It is impossible
to identify which children have absorbed undue amounts of
lead except through specific testing.      First, levels of the
lead which are not sufficient to produce any overt symptoms
of poisoning can nevertheless impair health and behavior.
Second, even where symptoms are present, they are nonspecific
for lead poisoning (constipation, loss of appetite, vomiting,
irritability, listlessness, and cramps) and will often be mis-
diagnosed unless the physician strongly suspects lead poison-
ing. The symptoms are often attributed to other childhood
illnesses.

      Experts do not agree on the level of lead in the blood
which can be considered "normal" or "safe." CDC has defined
lead. poisoning as (1) a confirmed (two successive determinations)



                              61
blood lead equal to or greater than 80 micrograms of lead per
100 milliliters of blood with or without symptoms, (2) eryth-
rocyte protoporphyrin level equal to or greater than 190 micro-
grams of lead per 100 milliliters of blood with or without
symptoms, (3) 50 to 79 micrograms of lead per 100 milliliters
of blood with compatible symptoms which cannot be explained
otherwise, or (4) erythrocyte protoporphyrin level of 110 to
189 micrograms of lead per 100 milliliters of blood-with com-
patible symptoms which cannot be explained otherwise. All are
considered to require immediate treatment. The effects of
lesser amounts of lead are not clearly known, but studies have
shown that mental impairment can occur at levels down to 40
micrograms of lead per 100 milliliters of blood. 1/ As a
result, anything over this level is generally considered
"elevated" and warrants intervention even without symptoms
of lead poisoning.

     Without specific screening for lead poisoning, the extent
of the problem cannot be fully identified.   It is also diffi-
cult to determine the incidence of retardation caused by lead
poisoning, but according to HEW, it is probably not infrequent.
In one study of 425 children with lead poisoning, mental retar-
dation was the most frequent consequence, occurring in 22 per-
cent of the cases.  The American Academy of Pediatrics has re-
ported that at least 25 percent of c~ildreri with lead poison-
ing are left with permanent central nervous system damage; even
higher incidence has been reported by other investigators.

      In 1972 HEW estimated that at any given time about
600,000 children have elevated blood lead levels~ This in-
cludes about 6,000 children with neurological handicaps,
including mental retardation; about 200 children that die
annually; and about 150 children requiring lifetime institu-
tional care as a result of lead poisoning.   It was estimated
that lead poisoning costs about $195 million a year, including
hospitalization costs, loss of earnings, added educational
expenses, and the costs of lifetime care.   In commenting on
a draft of this report, HEW advised us that this estimate is
now probably very low.   HEW added that there is compelling
data that low level chronic toxicity impairs neurological
development in the very young and results in significant
educational underachievement and hyperactivity.   In the first
9 months of fiscal year 1975, HEW-funded screening programs



l/In 1975 CDC defined "undue lead absorption" as 30 to 79
- micrograms of lead per 100 milliliters of blood.  In this
  report we have used "elevated" to mean 40 micrograms or
  greater.


                              62
     identified about 4,600 children with elevated lead levels,
     or about 14 percent of the children screened.

     SOURCES OF LEAD

          Before 1955, lead-based paints were used extensively
     for interior painting.   Most cases of lead poisoning have
     been found in children living in poorly maintained older
     homes and apartments, and most efforts to combat lead poison-
     ing have concentrated on eliminating lead-based paint from
     houses and apartments.   Lead poisoning continues to be viewed
     by many as restricted. to slums and poverty conditions.

          However, lead poisoning is not confined to the inner
     city or restricted to the poor.  For example, in areas with
     newer housing some exterior paints still contain lead.

t         Airborne lead has become a subject of great interest
     since 1972. Studies of children living near lead smelters
     have shown that breathing particles in the air and ingesting
t.   the dust appears to cause elevated lead levels.   Studies by
     the Environmental Protection Agency indicated that breathing
     automobile exhaust laden air dramatically increases the levels
     of lead in the blood and that samples of street dirt and
     house dust in urban areas have revealed concentrations of
     lead greater than those considered safe in paint.   Other
     studies have shown that soil and vegetation alongside roads con-
     tain high amounts of lead (esulting from automobile exhaust.
     Other potential sources of lead poisoning include certain
     canned foods, ink used in childrens' books and magazines,
     evaporated milk, baby food, silve~-plated baby cups, and
     water supplies.

     INEXPENSIVE SCREENING
     TECHNIQUES ARE AVAILABLE

          One limitation to widespread screening has been the cost.
     For example, about 444,000 high-risk children were screened
     in federally funded projects in fiscal year 1975 at a cost
     of about $20 a child.  However, a recent breakthrough in
     screen{ng techniques makes it possible to expand screening
     to relatively low-risk areas, such as suburbs and rural areas.

          One test, called the FEP test (free erythrocyte proto-
     porphyrin), uses a dried blood sample collected on filter
     paper exactly as it is used for PKU.  (Seep. 24.)   In some
     instances, it can detect a case of lead absorption when lead
     concentration itself is too low to be considered positive
     and would be missed by the standard technique.  The test



                                  63
will also identify cases of iron deficiency 1/ anemia because
anemic children also have elevated FEP levels.

     Almost anyone can be quickly taught to collect the dry
blood specimen, so trained volunteers can be used.   In addi-
tion, the blood specimens can be collected in one place and
mailed to a center .where large volumes of the test can be
carried out inexpensively with less possibility of contami-
nation. The original developer of the test and a State lab-
oratory official who refined it said the test can be per-
formed for about $2. CDC recommends that the FEP test be
used for screening, followed by a blood lead level test for
all children found to have elevated FEP levels.

     Another method of screening is also available which tests
for lead poisoning and anemia by measuring zinc protoporphyrin
in a small blood sample.   CDC estimates that the total cost of
laboratory equipment and personnel is about 10 cents per child
in high-volume areas, although they pointed out that labora-
tory costs are only a small portion of the total cost of
screening.  A small portable machine for this test has been
constructed and at the time of our field work was being field
tested.  We were subsequently advised that the field tests
have been completed and the instruments are corning into wide
use.

     Although the amount of screening needed for States to
identify the extent of the problem by area varies, it
probably would not involve screening every child. We
estimated, though, that even if all children under 5
years of age were screened and those needing treatment
were treated, the total cost would probably be about
$70.5 million as shown on the following page.




!/It will also detect iron deficiency even before anemia
  ensues.



                              64
   Estimated cost of initial screening:                $40,000,000
     (20 million @ $2)

   Estimated cost of· confirmation testing:              3,000,000
     (600,000 @ $5)

   Estimated cost of chelation treatment:     (note a) 27,500,000
     (110,000 @ $250)

        Total                                     ~/   $70,500,000


a/Reducing the blood lead level by injecting the patient with
- a chemical which combines with lead and draws it out of the
  circulatory system so it can be excreted from the body.

~/Due to absence of exact data on the incidence of lead poi-
  soning, these computations were based on gross HEW estimates.
  This analysis is presented solely as a general indication of
  the advantages of prevention.

      Although the costs of screening and treatment appear to
be high, they are much lower than the $195 million HEW has
estimated lead poisoning costs the country annually in hos-
pitalization, lost earnings, added special education, and
lifetime care. Also, it should be noted that in the years
following the initial testing, the costs of screening could
probably be reduced because areas shown to have a low yield
of lead poisoning can be eliminated from screening and re-
sources could be focused on problem areas.   Also, the cost
of chelation therapy would drop as more children are identi-
fied before their lead levels become so high as to require
chelation.

     As discussed on page 62, HEW believes its $195 million
estimate of the cost of lead poisoning may now be very low.
In addition, HEW believes the $i50 cost for chelation treat-
ment may also now be very low because most practitioners now
prefer affected children be hospitalized for the treatment
which lasts 5 days.  They added that hospitalization of 14
to 21 days is not unusual for symptomatic cases, followed
by 1 to 6 months of outpatient therapy.

FEDERAL AND STATE EFFORTS HAVE BEEN MINIMAL

     Since fiscal year 1972 CDC has awarded project grants
to selected communities to screen children for elevated
levels of lead in the blood.  In addition, grants are used
to help develop State laboratory capabilities in lead



                              65
analysis, setting and enforcing standards, and monitoring
performance of local laboratories. CDC also cooperates with
other Federal agencies who have responsibilities in areas re-
lated to childhood lead poisoning, such as the Department of
Housing and Urban Development, Maternal and Child Health pro-
grams, and the EPSDT program.
     Other Federal efforts to prevent lead poisoning include
public education activities by HEW's Bureau of Community
Health Services, lead screening by some children and youth
projects, special screening projects financed through mater-
nal and child health programs, and research grants to study
effects of lead exposure. However, if the problem is to be
eliminated, expanded screening is needed as a first step to
identify its full extent and increase public awareness of
lead poisoning and support for its elimination.
     The Director of CDC, in a June 1975 statement before
the Senate Subcommittee on Health of the Committee on Labor
and Public Welfare (now Committee on Human Resources), reiter-
ated the importance of expanded screening. Objecting to legis-
lation which would prevent child screening grants from being
awarded to a community unless assurances were present that a
lead-based paint program would be carried out, the Director·
said that elimination of lead-based paint hazards in the homes
of children who have elevated blood lead levels would be costly
and would reduce the amount of funds available for screening
and pediatric management.
     In addition he said that the hazard of undue lead
absorption often could be markedly reduced without totally
eliminating all lead-painted surfaces. For example, alter-
nate housing might be found for the affected family rather
than remodeling their existing house. However, this does not
solve the problem for the next f~mily with children that
might move in. Also, alerting family members of the dangers
to a young child and having them clean up flaking paint and
dust could reduce the risk of exposure.
     CDC said that all children ages·1 to 5 who live in or fre-
quently visit poorly maintained buildings constructed before
the 1960s should be screened at least once a year and that
lead poisoning should be a reportable condition to allow more
meaningful analysis at the local and national levels. The
lead screening and eradication demonstration projects it has
funded successfully showed the feasibility of lead poisoning
control. However·, according to CDC, State and local govern-
ments have generally not mounted aggressive programs. CDC of-
ficials said that most State, city, and local health department
officials do not consider lead poisoning a significant problem


                              66
     in their areas; but where lead poisoning screening has been done,
     the problem has been found to be more widespread than anticipated.

          HEW advised us in April 1977 that (1) in the past year
     there has been increased awareness among State and local govern-
     ments regarding lead poisoning in children; (2) since CDC has
     adequately demonstrated that lead poisoning is not confined to
     the so-called "lead-belt" in the cities of the Northeast, more
     enthusiasm has been generated; and (3) HEW has found undue
     lead absorption in ali areas of the country, rural or urban,
     where a child is in association with an environment that
     contains lead.

          The House Appropriations Committee directed CDC to take
     the initiative in fiscal year 1975 to help other.HEW service
     programs incorporate routine lead screening as an integral
     part of the delivery of health care. Maternal and child
     health programs, children and youth projects, and community
     health centers have included lead poisoning screening in at
     least some of their projects but there is no reporting system
     or followup to determine how much screening is being done or
     what the results are.

          In the States we reviewed, lead-poisoning screening was
     limited. Georgia·, for example, had only one lead screening
     project before 1975 other than small-scale surveys .in a few
     cities. This project, located in Savannah, had been operat-
     ing for 3 years but only about 7,900 children had been
     screened in that period.   In 1975 Georgia began its lead-based
     paint poisoning project, but due to limited funds the project
     was confined to two health districts; the project in
     Savannah was continued and expanded and another was begun
     in Augusta.  In Savannah 18 percent of those screened
     showed elevated blood lead levels; in the other surveys, the
     rate was around 35 percent.

          Missouri had no statewide program for lead screening.
     Two public health service screening projects were operating
~-
     in urban areas characterized by high incidence of lead poi-
     soning and dilapidated housing; up to 34 percent of the
     children screened had elevated lead levels.  One of these
     projects had a Department of Rousing and Urban Development
     grant for housing detoxification.  At the time of our review,
     CDC and Environmental Protection Agency-sponsored studies
     were being made of airborne lead near smelters in Missouri,
     but results of those studies were not yet available.

nt
     _California had no organized statewide lead poisoning
screening program; screening was generally limited to the
few counties which elected to do the testing under EPSDT
as explained on page 69. Research studies have indicated
that lead poisoning might be a problem.   In one study, 150
or 3 percent of 5,000 children screened in Los Angeles had
elevated blood levels; in one health district the incidence
was 7 percent.

     According to the National Association for Retarded
Citizens, lead poisoning prevention programs would probably
receive broader support from the public if screening were
expanded beyond urban ghettos and more cases were found among
children in suburbs and rural areas.

EPSDT program

     HEW has emphasized includin~ lead screening_ under Medi-
caid's EPSDT program and CDC has worked with HEW's Social and
Rehabilitation Service on technical guidelines for lead
screening. HEW guidelines for EPSDT state that screening
programs should include, as a minimum, testing all children
between the ages of 1 and 6 for lead poisoning, especially
those living in old dilapidated buildings or slums.     ·

     Part of the justification for the $5.5 million decrease
(from $9 million to $3.5 million) in CDC's fiscal year 1976
budget for lead poisoning prevention was that EPSDT and
other health service delivery programs were to fill the gap.
However, systematic wide~scale screening for lead poisoning -
is not being done.  HEW does not even require that the number
of children screened for lead poisoning under EPSDT be
reported; it only requires reporting of those cases referred
for diagnosis and/or treatment.

     According to the fiscal year 1975 national EPSDT screen-
ing statistics, about 1.5 million children were scr~ened for
various disorders.   Since the number of lead poisoning
screenings performed are not reported, it is not possible to
tell how many were tested for lead poisoning, but it appears
that it was a small percentage of the total number of chil-
dren screened.   The fiscal year· 1975 statistics show that,
for States for which such data was available (14 States did
not have the information), only about 11,900 children of
1.3 million screened were referred for diagnosis or treatment
for lead poisoning.   If the experience of the EPSDT program
is similar to other HEW-supported screening projects which
show 12.5 percent of the children screened to have elevated
lead levels, it would appear that only about 95,000 children



                             68
were tested for lead poisoning--less that 10 percent ot the
children reportedly screened by EPSDT.  It should be noted that
about two-thirds of the referrals were reported by four States.

     In the States we reviewed, screening for lead poisoning
under EPSDT was optional.  In California, for example, each
county could decide whether to include lead screening; in
Missouri it was left to the discretion of each physician.

     Georgia's EPSDT procedures provided that only those
children who showed symptoms of lead poisoning would be
tested because the State believed that it would be too expen-
sive to test all children. However, this.seems anomolous in
light of previous experience which shows that only about
5 percent of those children with elevated lead levels show
any symptoms and those symptoms could be so generalized that
lead poisoning wouldn't normally be diagnosed unless it was
already suspected.  Also, irreversible damage may have occur-
red by the time symptoms are obvious. The State was consider-
ing extending testing to some children not showing symptoms
in high-risk areas, such as those having a large number of
homes constructed before 1950 and those where physicians have
found lead poisoning cases.

     In California and Georgia no statewide information was
available on how many tests for lead poisoning were being con-
ducted.  In Missouri only 114 children out of almost 51,600
screened under EPDST during 1973 and 1974, were tested for
lead poisoning.

      In a 1975 preliminary report on EPDST results prepared
by the staff of the Oversight and Investigations Subcommittee
of the House Committee on Interstate and Foreign Commerce,
20 out of 35 State Medicaid agencies that responded to a
questionnaire reported they were screening for iron deficiency
anemia.   As previously described, the same test can screen for
both lead poisoning and anemia at the same time. Therefore,
if these States were to use one of these methods in their anemia
testing they could simultaneously screen for lead poisoning.

CONCLUSIONS

     Excessive blood lead levels can have several adverse
effects on children. One such is retardation. The principal
hazards from lead comes from lead paint chips, automobile
exhausts, and lead smelters.

     Elevated blood levels caused by excessive lead absorption
can be identified, treated, and prevented. Eliminating lead
hazards nationwide is expensive and outside the scope of our
review.

     Notwithstanding general efforts to clean the environment,
techniques are now available to identify persons with elevated
blood lead levels and treat them and ·identify areas where
limited resources can most effectively reduce or eliminate
the hazards. Neither Federal agencies nor the States,
however, have taken necessary action.

     Increased leadership, guidance, and efforts by HEW are
needed to assure that the. incidence of mental retardation
(and other adverse effects) caused by lead poisoning is
reduced by expanded screening to identify areas having a sig-
nificant incidence of lead poisoning cases.

RECOMMENDATIONS

     We recommend that the Secretary of HEW:

     --Guide the States on how best to use their EPSDT
       programs to identify areas needing expanded lead
       poisoning prevention efforts; encourage the States
       to embark upon aggressive lead screening efforts; and
       support expansion of public and physician education
       on the problem of lead poisoning.

     --Require reporting under EPSDT of the number of indi-
       viduals screened for lead ,poisoning as well as the
       number referred for treatment.

     --Require HEW agencies that are screening for lead poi-
       soning to report on the results of screening to aid
       in identifying problem areas.

     --Consider having CDC develop a surveillance system to
       analyze the problem at the national level.

AGENCY COMMENTS AND OUR EVALUATION

     HEW concurred in part with our recommendations.  HEW
advised us that it is presently conducting a total review of
the EPSDT program to determine optimum restructuring and that
our recommendations are being addressed in that context. Our
recommendations on reporting requirements are being considered
in revisions being made in the current EPSDT reporting require-
ments.




                             70
     HEW also advised us that:

     "An Information Memorandum on lead poisoning is being
     prepared by EPSDT staff, which provides information
     on problems, risk, and new technology in testing for
     lead poisoning called the FEP (Free erythrocyte
     protoporphyrin).  This test's low cost should encourage
     the States to use it. A copy of the CDC pamphlet
     titled, Increased Lead Absorption and Lead Poisoning in
     Young Children, dated March 1975, will be attached to
     the Information Memorandum. The pamphlet provides
     technical and specific information on methods used to
     screen, diagnose, treat and follow-up on children with
     increased lead absorption and lead poisoning."

      HEW did not specifically comment on our recommendation
that the Secretary consider having CDC develop a surveillance
system to analyze the problem at the national level.   The
intent of this recommendation was to give HEW information on
the extent of the lead poisoning problem in specific areas
of the country.   In revising the screening and reporting
requirement of the EPSDT program HEW should require including
this type of information to assist it in analyzing the
problem nationwide.
                          CHAPTER 8

  EXPANDING TESTING AND IMMUNIZATION TO PREVENT Rh DISEASE

     Rh hemolytic disease can be prevented.  Rh blood typing
can alert Rh negative ~omen that they are at risk; and they
can be desensitized to prevent damage to any future offspring.

     A 1972 Public Health Service report estimated that every
year about 20,000 infants are born with Rh disease and an-
other 5,000 pregnancies end in stillbirth. It further esti-
mated that 5 to 15 percent of those born with the disease
develop severe central nervous system complications if un-
treated.  These complications can lead to mental retardation,
hearing loss, cerebral palsy, or death. The most recent
information available shows that there were 7,000 infants
born in 1974 with Rh disease.

     According to the National Foundation-March of Dimes, in
many areas, women having an easily diagnosed need for immuno-
globulin are not receiving it.  Most States (1) have not
established mechanisms to monitor Rh.hemolytic disease,
(2) do not require premarital or prenatal blood typing, and
(3) do not compile comprehensive surveillance data on i~muno­
globulin use, Rh disease incidence, or the effectiveness of
prevention efforts.

     Without a continuous effort to identify Rh negative
women and to provide immunoglobulin to those women who need
it, this disease will not be eradicated.   Federally suppofted
family planning programB could help by typing their clients'
blood for Rh factor.   In addition; other Federal programs
that pay for or provide delivery services could provide blood
typing and vaccinate women found to be at risk.

METHODS OF PREVENTION

     If an Rh positive father and Rh negative mother.conceive
an Rh positive baby, some of the baby's blood cells may get
into the mother's blood stream during birth, causing the
mother's body to produce Rh antibodies. If the mother con-
ceives a subsequent Rh positive baby, tqe maternal antibodies
can attack and destroy the baby's blood cells causing jaundice,
mental retardation, deafness, anemia, cerebral palsy, seizures,
or death.

     Damage can be prevented in two ways.  Rh positive babies
found to have Rh disease can be treated by being given massive
blood transfusions shortly after birth to replace their damaged



                              72
blood cells with new healthy cells. The preferred method,
though, is to preve~t the disease by giving Rh negative moth-
ers immuno globulin--a serum licensed in 1968 which prevents
the production of the Rh antibodies. If an Rh negative moth-
er's body has not already developed antibodies by having Rh
positive children and if she is given immunoglobulin within
72 hours after having an Rh positive baby or following mis-
carriage or abortion, any futur~ Rh positive babies will be
free from danger of Rh disease.
     Whatever method used, the initial step in prevention is
typing the mother's blood. Women found to be at risk can
then be monitored closely during pregnancy and the appropri-
ate techniques used to avoid damag~ to their babies.
LACK OF COMPLETE NATIONAL INFORMATION ON
INCIDENCE AND IMMUNIZATION
     Asid~ from local efforts, little has been done to com-
pile and evaluate data on Rh hemolytic disease prevention.
Rh disease is· not on CDC's list of reportable diseases and
according to a 1974 CDC report only
     --5 States had mechanisms for fully monitoring
       Rh hemolytic disease,
     --7 States required by law either premarital
       or prenatal blood typing, and
     --6 States had special programs for reporting
       immunoglobulin utilization.
     The absence of accurate and complete national surveil\
lance data precludes any accurate determination of the inci-
dence of mental retardation resulting from Rh hemolytic
disease. Subsequent to the completion of our fieldwork, we
were informed by HEW that two surveillance reports have been
published which compile available national data which is
fragmentary but does show the need for better national data.
     In Georgia, State officials did not know the extent
of the Rh problem because
     --there was no Rh disease surveillance program,
     --Rh blood typing was not required to obtain a marriage
       1 icense, and
     --abortion clinics were not regulated or licensed by
       the State.

     Missouri did not require Rh testing before marriage,
testing pregnant women for Rh, or reporting Rh disease
of the newborn, although some information on Rh compli-
cations was available from birth certificates. Missouri
did not require abortion clinics to report information
on Rh typing and administration of Rh irnmunoglobulin to Rh
negative women.

     California had no statistics on the number of patients
placed in community care facilities for the retarded due to
Rh disease, but we did obtain the number of residents in
State institutions for the retarded suffering from kernicterus,
the major complication resulting from Rh disease.  In 1975
there were 89 residents, just under 1 percent of the total
State institutional population.

     Forty-nine States and the District of Columbia (Mary~and
did not report) reported a total of 320 infant deaths in 1974
due to Rh disease.   As part of CDC's Birth Defects Monitoring
Program, 1/ 1,200 participating hospitals, which account for
about one=third of the births in the United States annually,
reported a total of 2,660 cases of Rh disease in 1973 and
2,426 cases in 1974.

UNDERUTILIZATION OF Rh IMMUNOGLOBULIN

     National statistics of the number of women at risk w~o
are not receiving imrnunoglobulin are not available, but
studies and estimates indicate many women who need the globu-
lin are not getting it.  In a 1976 report, CDC estimated,
based on the number of immunoglobulin doses sold by U.S. man-
ufacturers, that in 1974, about 80 percent of the 449,100
women estimated to need the serum were receiving it; leaving
about 91,300 women a year at risk. Various reports show that
the utilization rate is uneven among the States and that part-
icular problems exist in rural areas and for abortions.

     In May 1975 at a symposium on Rh disease, representa-
tives of the University of North Carolina reported on the



l/A voluntary surveillance program jointly sponsored by the
- Commission on Professional and Hospital Activities, the
  National Foundation-March of Dimes, the National Institute
  of Child Health and Human Development, and CDC.




                              74
  results of five studies conducted between 1971 and 1974
. on immunoglobulin use following deliveries or abortions.
  Overall, the studies-revealed that only 57 percent of the
  women at risk received the serum. This report further stated
  that, even assuming an 80-percent utilization rate, given 3
  million live births and 1 million abortions a year, 1/ about
  12,000 women each year are added to the group of over 250,000
  women in their child-bearing years who have developed Rh anti
  bodies and are therefore at risk for having damaged children.

     One of these studies of a demonstration project at an
abortion clinic in Washington, D.C., showed what can be
achieved by aggressive prevention efforts. The project was
designed to achieve maximum use of immunoglobulin following
abortion. During the 7-week study, 255 (96 percent) of the
265 Rh negative women received the serum.  Of those who did
not, six refused because they were going to be sterilized
and the other four reportedly had Rh negative mates, so they
were not at risk for having an Rh positive child.

REQUIRING BLOOD TYPING
APPEARS TO HELP

     Of the States we reviewed, only California required
blood typing or monitoring of Rh disease. California's law
required Rh blood typing for all pregnancies, even those
ending in miscarriage or abortion, and reporting of all cases
of Rh hemolytic disease.  The law appears to have helped
reduce the incidence of Rh hemolytic disease.  Since 1970
when the law went into effect, the total reported incidence
of Rh disease dropped from 1,524 cases to 515 cases in 1974;
reported infant deaths dropped from 97 in 1970 to 8 in 1974.

     In the other States we reviewed, the incidence appears
to be much higher.  For example, a 1975 CDC report showed
11 infant deaths in Georgia due to Rh hemolytic disease in
1973. There were 23 deaths that year in California, which
has over three times the number of annual births as Georgia~
In Missouri, a State review of birth certificates and fetal
death certificates identified 463 complications of pregnancy
in 1974 due to Rh sensitization compared to 515 cases in
California; California has more than four times the annual
number of births as Missouri. Also, the actual number of
Rh complications in Missouri may have been much greater than



l/The authors recognized that the rate for abortions may
- have been overestimated.·
the 463 cases reported because the State has found that hos-
pitals and physicians were not providing complete data on
about 50 percent of the birth and fetal death certificates.

     Although California's law does not require reporting of
immunoglobulin use, this rate also appears to be higher than
in the other States we reviewed.   For example, a California
department of health study of 11 hospitals revealed that of
183 women who were considered candidates for immunization,
all but 6 received immunoglobulin.   Of those who did not,
five were going to be sterilized and the sixth simply refused.

     A health official in Georgia stated that, in his opinion,
practically all Rh negative women in the State were receiving
immunoglobulin without a mandatory State surveillance program.
However, a 1972 report by a CDC researcher, the most recent
study available, covering nine rural Georgia hospitals,
showed that an average of only 62 percent of the women at risk
following full-term delivery received serum.  In one hospital,
the rate was zero and in two others less than one-third of
the women at risk received the serum.

     The report stated that for abortions the situation was
worse.  In six hospitals, Rh immunoglobulin was given on the
average to only 42 percent of the women at risk. The report
cited two barriers to optimal serum use following delivery or
abortion:  (1) if no prenatal Rh blood typing is performed,
the women at risk may not be identified and (2) physician's
and patient's lack of awareness of the need for the globulin,
particularly following abortion.

       Miss9uri had no requirement for making Rh immunoglobulin
 available to Rh negative women. No data was available to/show
.the number of Rh negative women receiving immunoglobulin.
 Missouri health officials we interviewed thought that Rh com-
 patability testing and provision of immunoglobulin was a
 matter for the women's private physician and that it was al-
 ready routinely done.   However, the incidence of Rh compli-
 cations cited above indicates that this ·is not necessarily
 true.

FEDERAL PROGRAMS COULD HELP

     In January 1976, the Deputy Director of CDC's Birth
Defects Division prepared a position paper on the prevention
of Rh disease.  He pointed out that:

     --There is a persistent lack of data concerning the use
       of immunoglobulin following spontaneous and therapeu-
       tic abortions.


                              76
     --Without this data there should be continued concern
       that many Rh negative women are not receiving immuno-
       globulin and are becoming sensitized (developing
       antibodies).

     --In view of these circumstances, there is a need for a
       concerted national and local effort to assure complete
       use of Rh immunoglobulin where indicated following all
       deliveries and abortions~

     The Deputy Director's paper stated that there is a need
for national leadership in highlighting the continuing prob-
lems of Rh hemolytic disease and need for immunoglobulin and
suggested that:

     --Each hospital with obstetrical services implement a
       system to insure that every pregnant woman has an Rh
       determination.

     --Immunoglobulin be given to Rh negative women when
        needed.

     --Provision be made for compiling data that each
       hospital can use to assess its program and quickly
       identify breakdowns or other barriers to immunoglo-
       bulin administration.

     An approach suggested in the paper would be to specify
to States the elements needed for a community Rh prevention
program and give examples of how some States (Connecticut,
California~ Illinois, New Jersey, Colorado) have developed
programs. States and communities could use this information
to plan the approach most suited to their own needs. Consul-
tation could be given by CDC and through maternal and child
health programs. Data compiled at the community level could
be sent to CDC for incorporation into the Rh Disease Surveil-
lance Report, thus providing progressively better assessment
of Rh disease prevention.

     The paper further stated that the details of a hospital
information system are being developed which would insure
that all information needed to make an informed decision
regarding immunoglobulin use is made on each woman delivering
a baby or having an abortion.  This information, properly
organized and collected, can be used to evaluate the success
(or failure) of the hospital system.

     The medical director of California's department of
health developmental services program, treatment services
division, stated that Federal programs could help prevent Rh
disease.by requiring (1) Rh testing in every pregnancy where
the prenatal care or delivery is paid for through Federal
programs, such as maternal and child health, and (2) all hos-
pitals with obstetric services that.receive or have received
Federal funds for construction, training, or operations to
include Rh typing in every delivery, miscarriage, or abortion
and implement a system for reporting Rh disease and immuno-
globulin use.
     Federally funded family planning programs could also
help. As discussed on page 59, blood testing is a routine
part of family planning services. According to a 1973 publi-
cation, the "Economics of Mental Retardation, 11 where a blood
sample is already being taken for other purposes, Rh typing
could be added for pennies more. However, the family plan-
ning programs we contacted did not routinely screen couples
for Rh incompatibility.
CONCLUSIONS
     Mental retardation and other complications caused by Rh
hemolytic disease can be prevented through aggressive actions
to identify Rh negative women and provide them with immunoglo-
bulin when they bear Rh positive children or have abortions.
Although the extent of the problem is not known, many women
apparently are not receiving immunoglobulin. The extent of
the problem could be more accurately determined if more
States had comprehensive systems for testing pregnant women
for Rh imcompatability, reporting disease incidence, and
reporting immunoglobulin utilization. In lieu of State laws
requiring such tests, the family planning programs could
assist by including Rh blood typing as a routine part of
family planning services.
RECOMMENDATIONS
     We recommend that the Secretary of HEW:
     --Instruct CDC to determine if the incidence of Rh
       disease is lower in States having mechanisms for moni-
       toring Rh disease and immunoglobulin use. If such
       surveillance mechanisms are effective, encourage
       States to develop comprehensive systems to test all
       pregnant women for Rh incompatibility and report
       incidence of Rh hemolytic disease and use of Rh
       immunoglobulin to CDC, thereby establishing a national
       program for monitoring the incidence of the disease.



                             78
     --Require federally supported family planning programs
       to include Rp blood typing as a routine part of family
       planning services.

     --Encourage Rh testing in all ·deliveries, miscarriages,
       or abortions paid for with HEW funds and provide
       immunoglobulin to women who need it.

AGENCY COMMENTS

     HEW agreed with our recommendations.  The Department
stated that CDC is offering consultation to States upon request
by helping them determine the nature of the problem and offer-
ing possible solutions.

     With respect to our recommendation that federally sup-
ported family planning programs be required to include Rh
blood typing as a routine part of their services, HEW ad-
vised us that (1) Rh type should be considered an essential
component of every woman's personal health knowledge; (2) Rh
typing could be provided through several Federal programs;
and (3) if a client has not been previously typed and pre-
sents herself at a family planning clinic, this will be in-
cluded as a routine part of family planning services.

     HEW also advised us that, with respect to our recommend-
ation that it encourage Rh typing in all deliveries, miscar-
riages, or abortions paid for with HEW funds and providing
immunoglobulin to women who need it, programs supported through
title V funds are encouraged to _include prevention of Rh dis-
ease in all programs.  Also, although title XIX (Medicaid)
standards are set by the State, the Department urges compre-
hensive service availability.




                             79
                          CHAPTER 9

            IMPROVING EARLY CHILDHOOD EXPERIENCES

      Although the exact relationship between poor living
conditions and mental retardation is still not fully under-
stood, many research and demonstration projects and programs
have been implemented. However, these efforts have not been
systematized at either Federal or State levels.  None of the
HEW agencies we contacted felt it was their direct responsibi-
lity to collect and evaluate the results of various programs
aimed at preventing psychosocial retardation or implementing
those that are the most efficient and effective. As a result,
little is known about the full extent of ongoing programs,
how many people are being reached, or whether the techniques
being used ar~ effective and could be more widely applied.

     The previous six chapters of this report have discussed
clinical causes of mental retardation which are generally more
severe and costly.  However, as indicated in chapter 1, it is
generally estimated that approximately 75 percent of the
incidence of mental retardation can be attributed to adverse
environmentai conditions during early childhood. ~hile these
cases are generally less severe, they do account for the larg-
est number. Preventive methods, however, are less clear-cut
for psychosocial retardation than for clinical causes.

PREVENTIVE TECHNIQUES

     Developing massive programs to overcome the problems of
millions of impoverished citizens is clearly beyond the scope
of what can be done in the foreseeable future.  According to
the National Institute of Child Health and Human Development,
a more feasible approach involves identifying the most c~iti­
cal factors in early childhood development, the changes in a
child's daily living experiences which would help prevent in-
tellectual and behavioral shortcomings, and when and for how
long intervention should occur.

     Two approaches appear to help prevent this cause of
retardation--educating parents on better child-rearing practices
and providing the stimuli to high-risk infants which are missing
from their environments.

Parent education

     According to some authorities, one means of preventing
psychosocial retardation is by equipping parents with good
child-rearing skills.  Ignorance of important facts involving




                              80
     a child's development is especially acute in young unwed mothers,
     minority groups, and low-income families.  Also, parents of
     lower intelligence do not readily recognize delayed development
     in their children.

          There are no definite guidelines on the best way to raise
     child~en, but certiin techniques ·appear to be relevant to healthy
     intellectual and social development. One study of early childhood
     development, the Harvard Preschool Project, was funded in part
     by the Office of Education and conducted by the Harvard Graduate
     School of Education. The study focused on. the experiences of
     children from birth to age 6 in the environment of their own
     homes.

          The researchers identified certain child-rearing techniques
     used by mothers of children who developed well and which appeared
     to be significant factors in that development. The study in-
     dicated that more research is needed to determine the most
     effective child-rearing practices, but that much more is known
     now than is generally taught to parents.  Furthermore, what
     little is available is not readily available.

          The researchers concluded that few, if any, modern societies
     make extensive efforts to prepare and assist their families to
     raise children and that we must pay considerably more attention
     to child-rearing practices.

     Early intervention

          One of the more widely publicized studies of early inter-
     vention was a research and demonstration project funded by HEW's
     Rehabilitation Services Administration, the "Milwaukee Project."
     The study, ·which cost an estimated $1.7 million, was done by
     the Waisman Center for Retardation in Madison, Wisconsin. The
     researchers selected women from a run-down metropolitan area of
     Milwaukee previously identified as having a high prevalence of
!S   retardation. Training programs were designed for the mothers
Lg   in the experimental group which included instructions in
     mothering, child care, and homemaking.   In addition, trained
     professionals assisted the families in child-rearing activities
     and enriching the children's early experience.

          Throughout the term of the project, the children of the
     experimental group and the control grbup were repeatedly tested.
     The children in the experimental group developed intelligence
     quotients which averaged about 25 points higher than those in
     the control group.  The researchers concluded that early and



                                 81
intensive stimulation and education intervention can minimize
developmental problems normally presented by high-risk children
when they attain school age.

ONGOING PROGRAMS HAVE
NOT BEEN SYSTEMATIZED

      In the States reviewed, we identified many programs which
included parent education and/or early intervention.   However,
information on the results or effectiveness of these programs
was not being centrally or systematically collected and
evaluated.   Most State health and education officials we
contacted were unaware of the extent, scope, or content of
programs in their States. For example, we identified several
programs in Missouri that included education on childhood
development, but State officials had no information on the
scope, content, or design of the programs and told us that we
would have to obtain such information from the projects them-
selves.   Although we found several programs and projects in
Mis~ouri which appeared to inciude early intervention, the
director of the Missouri division of health stated that the
adequacy of the intervention programs is still to be determined.

      The director of special education projects for Missouri
 told us that the department of elementary and secondary
 education provided funds to local school districts to operate
 programs for 3 and 4 year olds.  However, information concerning
 the programs' format was not required to be submitted to the
 State so he had no information on individual program content;
.he did not even have a list of the districts that had such
 projects.

      In California, there were several private and publicly
supported programs designed to enhance early childhood develop-
ment.   California's department of education operates several
programs directed at parent education and early childhood
development including:   Early Childhood Education Outreach,
preschool programs, the School Age Parenting and Infant
Development Program, and the Child Development Programs.   How-
ever, education officials said that no standards had been set
up or evaluations done to measure their impact. Also, since
the programs of the department of· education were administered
at the school district level, and since each school district
was autonomous, the individual program approaches varied.

     One California health official said his department had
been reluctant to implement widespread intervention programs




                              82
     because they were not yet convinced of the programs' merits.
n    He cited the inconclusiveness of the developmental testing
     methods used, especially testing based solely on intelligence
     quotient measurement .. An additional drawback he saw was that
     the state-of-the-art of child development and early intervention
     techniques is unclear and experts in the field disagree on
     proper intervention methods.

          In Georgia, the State director of physical health told us
     that very little was being done to educate parents and to
     identify and intervene with high-risk infants. Other State
     and HEW regional officials interviewed said they believed
     there were such programs operating in the State, but they could
     not identify them.  For example, Region IV's Coordinator
     for Education and Community Services said that there were
     various education programs to help parents properly develop
     their children, but they varied by State and State officials
     would have to be contacted to obtain specific information.

          We identified several programs in Georgia which appeared
     to include education on childhood development, such as the
d.   Parent Education Demonstration Projects funded by the Off ice
     of Education, and programs offered through State-supported
     child development centers, but State officials had not
     collected or evaluated information on the programs' design or
     what they included.
ng
     THE NEED FOR FEDERAL EVALUATION.
     OF PREVENTION TECHNIQUES

          Several Federal studies have been made to identify research
     and intervention programs throughout the country. One study
     completed under an HEW contract in 1972 to assess the delivery
     of early intervention programs to potentially retarded children
     identified more than 40 longitudinal intervention research
     programs for high-risk children.

          In 1974, the National Leadership Institute/Teacher Education
     at the University of Connecticut completed a survey to determine
     what programs for children under 3 years of age were operating
     or proposed.  Information was solicited from several sources,
     including State departments of education, State offices of
     child development, and early education program directors.  A
     total of 53 ongoing and proposed programs were identified
     operating at 116 sites and involving about 19,000 children
     and their families.   Additionally, 8 universities and 23
     community colleges were involved in infant and toddler research
     and service programs.
     The Office of Child Development, the Office of Education,
and the National Institute of Mental Health jointly sponsored
a program to help teenage boys and girls prepare for parenthood
through learning about child development and working with young
children.  As part of the program, a workstudy curriculum in
child development was developed for secondary school students.
The course was tested in 234 schools during the 1973-74
school year and in 1975 was being started in about 1,000 schools,
universities, and other organizations throughout the country.

     Aside from these efforts, no single agency within HEW
assumed responsibility for systematically evaluating the results
of such programs or for seeing that effective techniques are
implemented.   In 1972, an HEW contractor reported on the status
and results of intervention research projects funded from a
variety of private and Federal sources including the Office of
Education, the Office of Child Development, and the National
Institute of Mental Health. The report ~tated that (·l) there
is no centralized system to guide and orchestrate the various
longitudinal intervention research activities being conducted,
(2) in most respects, the area is actually understudied in
light of the research results obtained and the promise they
show, especially with very young children with moderately low
intelligence quotient scores, and (3) no significant studies
were being conducted to evaluate the social and cost benefits
of intervention with potentially retarded preschool children.

     A report prepared by the National Institute of Child
Health and Human Development for presentation to the National
Advisory Child Health and Human Development Council in 1973
stated:

    "Too little attention has been given to the damaged
    and at risk infant, and we need to know much more
    about the interaction effects operating in his early
    development as building blocks to intervention
    programs.  In particular, we need to systematize
    this work and make it at once whole with objectives
    of our goal-optimal intervention for the damaged
    and risk infant and child."

     The outcome of the Milwaukee Project is an example. After
10 years of operation, Federal funding of the study lapsed.
No systematic evaluation has been made of the study's results
to determine if the techniques used are effective or could be
implemented in other Federal programs. Rehabilitation Services
Administration officials believed the study results were of
great value and that it should be continued, but attempts by




                             84
      that agency and PCMR to have other HEW programs continue fund-
      ing of that or similar projects have been unsuccessful.

           A Rehabilitation Services Administration official told
      us that agency had not continued that or similar projects
      because it was outside the scope of its responsibility. No
      clearcut reasons could be given as to why other agencies had
.s,   not picked up project funding except that PCMR had apparently
      been unable to generate enough interest in it and no other
      agency felt that the project fell directly under its respon-
      sibility.
:s
           An October 1975 seminar, jointly sponsored by the Univer-
      sity of Wisconsin, PCMR, the National Association for Retarded
      Citizens, and HEW, pointed to a need to identify the most ef-
      fective early childhood intervention techniques, coordinate
      researchers and practitioners to solidify research data and
      implement research results, and implement evaluation and
      assessment systems.

      CONCLUSIONS

            Since the majority of the incidence of retardation is
      attributable to adverse early childhood experiences, any
      effective prevention strategy must address these causes.
      Although many studies and projects have been undertaken in
      this area, HEW has not established a strategy or fixed
      responsibility for identifying, evaluating, and implementing
      the most effective and cost beneficial parent education and
      early intervention techniques or for coordinating the work
      of researchers and practitioners.

      RECOMMENDATIONS

           We recommend that the Secretary of HEW:

           --Fix responsibility for (1) collecting· results of
             studies of parenting education and early inter-
             vention techniques and programs that have used
             these preventive measures and (2) evaluating
             their success.
 r
           --Identify (1) areas in most need of study and (2)
             most effective and cost beneficial methods of
             prevention.
 s
          --Disseminate information developed from evaluation of
            studies and programs to other Federal and State agen-
            cies for consideration in implementing their programs.
AGENCY COMMENTS AND
OUR EVALUATION
     HEW in commenting on a draft of this report did not com-
ment on our specific recommendations but advised us that the
issues will be addressed when the specific focal point in the
Office of the Assistant Secretary for Health is designated.




                              86
                                                                             l\:1\
                                                                             ::.!1
                                                                              !,I
                                                                                   ,!
                                                                                   :I
                                                                                    I
APPENDIX I                                                      APPENDIX I




             DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE
                         OFFICE OF THE SECRETARY
                           WASHINGTON, D.C.   20201




                                                      JUL 2 5 1977



     Mr. Gregory J. Ahart
     Director, Human Resources
       Division
     United States General
       Accounting Office
     washi~gton, D.C.  20548

     Dear Mr. Ahart:

     The Secretary asked that I respond to your request for
     our corrunents on your draft report entitled,. "Preventing
     Mental Retardation: More Can be Done.'' The enclosed.
     comments represent the tentative position of the
     Department and are subject to reevaluation when the
     final version of this report is received.
                                                                               ·i!

     We appreciate the opportunity to comment on this draft                   ,\
                                                                             1.:111



     report before its publication.                                           :1



                                                                              i
                                                                              111

                                       Sincerely yours,                       Ii

                                                                                    I


                                      ~"~•) )j_,)\vv;
                                       Thomas D. Morris
                                       Inspector General

     Enclosure




                                 87
APPENDIX I                                                     APPENDIX I
 co~wrs OF THE DEPARTMENT OF HEALTH, EDUCATION, AND.WELFARE ON THE
 COMPTROLLER GENERAL'S DRAFT REPORT TO THE CONGRESS OF THE UNITED STATES
 ENTITLED "PREVENTING MENTAL RETARDATION: MORE CAN BE DONE"

 General Comments

We are in general agreement with the draft report.

We find the conclusions contained in the draft report valid and the
recommendations worthy of implementation. Further, it reflects an approach
which has characterized the Department's activities since the President's
Panel on Mental Retardation reported its conclusions in 1962.

 Since that time, the Department has focused its efforts on those selected
 causes of mental retardation identified in the report, e.g., metabolic
disorders, prematurity and low birth weight, chromosome abnormalities,
 rubella and measles., lead poisoning, Rh hemolytic diseases, and early
 childhood experiences. It also supported research directed to a better
understanding of other factors associated with mental retardation (MR).
The GAO report is inadequate in its attention to research programs
 and fails to recognize the necessity for research to reduce the incidence
of mental retardation. A limited description of the Department's
research program underplays its significance in attacking the causes
of mental retardation. Research is needed in the areas of genetics,
 abnormal fetal growth, birth trauma, prenatal infection, malnutrition
 (all biologic causes of mental retardation), and psychosocial
deprivation (80% of men~al retardation stems from the influence of
an unfavorable environment). In addition, within the framework of the
existing service delivery system, current knowledge and techniques on
how preventive service delivery can be extended to a larger segment of
.the risk population, and how the delivery can be made more effective
and efficient through leadership and coordination have been addressed
by the Department. HEW delivers services only to a small minority
of the at-risk population. If the goal of reducing MR by 50% is to
be achieved, the private sector must be involved along with public
health programs.

While che draft report is clearly focused on a preventive effort related
to known biomedical causes, Chapter I of the report tend·s to somewhat
confuse the focus by addressing the broad problem ·of mental retardation
and to some ·extent leading to an expe.ctation- that subsequent sections
of the report might also address some of the issues of research, training,
or the sociocultural aspects of mental retardation.

GAO RECOMMENDATIONS·

GAO recommends that the Secretary of .HEW:
1.   Designate a focal point in HEW to implement a national prevention
     strategy, monitor and coordinate the ef~orts of the various HEW
     agencies and offices, and develop a method of determining the progress
     being made in reaching the goal.



                                    88
 APPENDIX I                                                       APPENDIX I




2.    Designate prevention of mental retardation as an objective in HEW's
      operational planning system.

DEPARTMENTAL COMMENTS

1.    We concur. The focal point for the Department will be in the Office
      of the Assistant Secretary for Health (OASH). The specific office
      within OASH will be designated py the ~ssistant Secretary for
      Health.

2.    We will consider including the prevention of mental retardation
      as an objective if the operational planning system -is continued.
      Whether the departmental system is continued or not, the relevant.
      issues will be monitored by the ·agency tracking system.

GAO RECOMMENDATIONS

GAO recommends that the Secretary of HEW help improve newborn screening
by:

1.    Determining what is needed to improve the coverage and effectiveness
      of newborn screening,programs and assisting States in improving
      their programs.

2.    Encouraging and supporting expansion of newborn screening to include
      other treatable metabolic disorders in addition to PKU.

3.    Encouraging and assisting States to cooperate in establishing cost-
      effective regionalized metabolic screening programs.

Department Comments

1.    We concur. The PHS Child Health Strategy addresses those issues, as do the
      implementation plan for the Genetic Diseas,es Act and ongoing activities
      described.in response to the next two recommendations. In a few
      States, hospitals still have the option of using private laboratories
      and reporting is difficult. Some States, for example, with only
      6,000 births per year and whose laboratory capacity limits their testing
      to the simple Guthrie procedure for Phenylketonuria, find it uneconomical to
      expand their screening for additional conditions, such as hypothyroidism,
      which would involve the purchase of additional expensive equipment.
      Many States hesitate to include other conditions in their screening




                                       89
APPENDIX I                                                       APPENDIX I


     programs, such as Maple Syrup Urine Disease, because of a concern about
     their· ability to provide adequate treatment services for those infants
     that might be detected (i.e., available genetic centers ·to manage and
     monitor the infant and to purchase and provide the amino acid dietary
     products).

2.   We concur. This encouragement and support takes several forms, such as
     technical assistance to State Health Department laboratories as to how the
     same blood spot on filter paper could be used to test for multiple
     conditions, providing some additional equipment to automate pro-
     cedures, developing guidance material on laboratory screening pro-
     cedures, treatment,. and management. Additional support for the
     genetic centers (generally genetic units at medical centers to which
     States refer positive screening results for management) would con-
     siderably encourage States to expand their screening efforts if
     they could be assured that these centers. they have designated could
     handle the increased load. At the moment, there is considerable
     -interest in hypothyroid screening for which effective· treatment
     and management may be comparatively simple compared to the other
     conditions. The full implementation of Title IV of the Genetic
     Diseases Act by the Bureau of Community Health Services should enhance
     the capability of the genetic centers and encourage a number of States
     to expand their newborn screening.

3.   We concur. Regional Newborn Screening Laboratories facilitate quality
     control and permit economies of scale. Consequently, they are the most
     cost effective approach. Two major Regional Newborn Screening Laboratories
     have been established with the assistance of the Maternal and Child
     Health Programs, BCHS. The Massachusetts State Health Department
     Laboratory by contractual agreement is screening all of the newborn
     samples from the New England States, except Connecticut, for five
     different~conditions.   The Oregon State Health Department has
     similar arrangements with the. States in ·the northwest. At the
     moment, California is in the process of setting up three regional _
     laboratories for the State. Ohio and North Carolina are interested
     when start up costs are available. Other States are being en-
     couraged to participate in regional systems through HEW-funded
     uni'Versity affiliated centers and genetics projects.

GAO RECOMMENDATIONS

To be able to establish priorities for the .allocation of prenatal care
funds in the most effective manner and to the areas of greatest need,
GAO recommends that the Secretary of HEW direct the Bureau of CoDDnunity
Health Services to:




                                      90
     APPENDIX I                                                    APPENDIX I


1.     Evaluate the Sta ~e procedures used to determine needs for prenatal
       care services and insure that State plans outline a clear strategy
       of how to reach the pqpulation in greatest need.

                          (See GAO note on p. 96.)


Department Comments

1.    We concur. Delegation of responsibility for Title V of the Social. Security
      Act to BCHS has included the responsibilities contained in the recommend-
      ation. The maternity and infant care projects program, established
      by the Maternal and Child Health Programs, was targeted on high risk
      populations (pregnant women in low income areas who bad previously
      received little or no prenatal care). While these programs provided
      such care and demonstrated an ability to decrease the infant mortality,
      they only provided for.follow-up of the newborn infant for on~ year and
      hence were never able to document outcome in terms of the ultimate goal
      of reducing mental retardation. Based on a State-by-State assessment of
      high infant mortality and morbidity distribution, BCHS has initiated State-
      wide Improved Pregnancy Outcome projects in 9 states. An.a~~itional 9 are
      projected. for fisca.1 year 1977. HSA is aware that in many States the unmet
      need for prenatal care has not been sufficiently analyzed (pp. 44.-47). In
      fact, the assessment of health service needs of mothers and children in all
      States is an elewent of HSA's Child Health Strategy for fiscal year
      1978-1982.


                          (See GAO note on p. 96.)


GAO RECOMMENDATIONS

GAO recommends that the Secretary of HEW:

1.    Direct federally supported family planning programs to include> as
      a routine part of their services, screening for individuals who
      are "high risk" for genetic disorders and ref er such individuals
      to diagnostic and counseling services.

2.    Monitor the demand on existing genetic resources created by outreach
      and develop strategies for increasing resources as needed.

3.    Explor~ how other Federal programs could better be used to provide
      genetic screening and services.




                                         91
APPENDIX I                                                        APPENDIX I


Department Comment

1.   We concur, in principle, but can not mandate universal scr~ening until_
     more capacity for effective screening and counseling is available.
     Family Planning Program Guidelines recommend these as clinic services
     where available.

     The demand on existing genetic resources at present exceeds their
     capacity. It is estimated, for example, that only 10,000 prenatal
     diagnoses were provided by existing genetic resources in 1976. Twenty
     genetic centers provided almost half of these evaluations.

2.   We concur. The continued monitoring of the demand on existing genetic
     resources is most important in implementing these recommendations to
     assure that the demands generated by any outreach and additional screening
     can be dealt with by the centers. Both the.Child Health Strategy and the
     Genetic niseases Implementation Plan stress State-wide networks with
     the State Health Department playing the key role in establishing
     linkages between screening and provider programs.

3.   We concur. Now that the focal ~oint has been established, it will be
     possible to work out.a mechanism to include these activities in other
     Federal programs.

GAO RECOMMENDATIONS

GAO recommends that the Secretary of HEW:

1.   Examine the alternative of expanding the Center for Disease Control
     support of State vaccination programs, or making arrangements
     between CDC and the Social and Rehabilitation Service that will
     enable EPSDT to more effectively support national and State
     immuniz·ation activities.
 (
2.   Expand EPSDT requirements to specifically require screening for
     immunization status and reporting of the number of screened and
     the number immunized.

3.   Requi.re Head Start projects to develop data on the results .of their
     immunization screening.

4.   Require federally funded family planning and other appropriate
     programs to include rube.lla susceptibility testing and immunizations,




                                       92
APPENDIX I                                                       APPENDIX I


where appropriate_, among their routine services.
Department Co11111ents
We concur. The draft proposed rev1s1on to the EPSDT Penalty Regulation
will require that the inmunization status of each Medicaid recipient be
detennined at the time the screening test is performed. Revisi-ons to
current reporting requirements are in process and include reporting on
inadequate immunization status found through screening.
The Department has proposed to Congress on April 25, 1977 legislation to
convert EPSDT to a Comprehensive Health Assessments and-Primary Care for
Children Initiative which will .address these issues. This has been
introduced as H.R. 6706 and S. 1392.
References in the draft (pp. 63-64) to the United States Immunization
Survey .should be reviewed. CDC has completed an evaluation of this
survey; changes which the evaluation report recommended to improve
accuracy have been approved.and the Bureau of the Census, which conducts
the survey for CDC, has implemented the changes. More aggressive
vaccination efforts are needed and the Department is currently plannfog
for them to include better coordination at a local level of the CDC
effort with EPSDT, Head Start, Child Find, and the Maternal and Child
Health delivery system.
While the recommendation that the federally funded family planning·
program be required to include rubella susceptability testing is gen-
erally compatible with improved prevention of Rh disease, the usefulness
of Rh typing in family planning clinics and in.premarital serologies
remains to be shown. The critical time to identify the Rh negative
woman is prior to birth of her child or at abQrtion. Screening at other
times should be shown to be· cost. effective before adoption as a recanmended
public health measure.
GAO RECOMMENDATIONS
GAO recommends that the Secretary of HEW:
1.   Provide guidance to the States on how best to use their EPSDT
     program to identify areas needing screening for lead poisoning;
     encourage the States to embark upon aggressive lead screening
     efforts; and support expansion of public and physician education
     on the problem of lead poisoning.
2.   Require reporting under EPSDT of the number of individuals screened
     for 1ead poi son.ing as we 11 as the number referred for treatment.
APPENDIX I                                                          APPENDIX I

 3.   Require HEW agencies that are screening for lead poisoning to
      report on the results of screening to aid in identifying problem
      areas.
 4.   Consider having CDC develop a surveillance system to analyze the
      problem at the national level.
 Department Cormnents
 We concur in part. In addition to recorrmending improvements in the
 EPSDT program through changes in the enabling legislation, the Depart~
 ment is reviewing current program operations to achieve optimum per-
 fonnance. These issues are being addressed in that context.
 An Information Memorandum on lead poisoning is being prepared by EPSDT
 staff, which provides information on problems, risk, and new technology
 in testing for lead poisoning called. the FEP (Free erythrocyte proto-
 porphyrin). This test's low cost should encourage the States to ~se it.
 A copy of the CDC pamphlet titled, Increased Lead Absorption and Lead
 Poisoning in Young Children, dated March 1975, will be attached to the
 Infonnation Memorandum. The pamphlet provides technical and specific
 infonnation on methods used to screen, diagnose, treat and follow-up on
 children with increased lead absorption and lead poisoning. On page 1
 of this CDC document, definitions of "Lead Poisoning", "Undue or
 Increased 11 11 Lead Absorption" and 11 Toxicity 11 used by the Department are
 set forth. We recornnend that GAO use these definitions in the body of
 this chapter in order- to clarify the recommendations.
 Reporting requirements in the recommendation are being considered in the
 revisions bei.ng made to the current reporting requirements for EPSDT.
 The age group most vulnerable to the ill effects of excess lead, 18
 months to 3 years, is also the group most likely to suffer from iron
 deficiency anemia (up to 40% in lower socio-economic groups). Hence,
 for every suspicious case detected by protoporphyrin measurements, it
 wil 1 be necessary to rule out iro.n deficiency as a cause for high
 protoporphyrin levels while remembering that both may co-exist.
 Preliminary analysis of the problem by CDC documents lead in dust as one
 of· the current major problems. A variety of sources, such as lead based
 paint on.the exterior of buildings, automobile emissions, fumes from
 industrial plants, etc. all contribute to this airborne lead. While the
 ideal long range solution of the problems of lead poisoning would be
 elimination of all environmental sources of lead, the more immediate
 public health approach requires a continuing effort at screening detection
 and correction of episodic problems.
 GAO RECOMMENDATIONS
 GAO recommends that the Secretary of HEW:
 1.   Instruct CDC to detennine if the inc·idence of Rh disease is lower
      in States having mechanisms for monitoring Rh disease and i~imuno-


                                       94
APPENDIX I                                                       APPENDIX I


     globulin use. If such surveillance mechanisms are effective,
     encourage States to develop comprehensive systems ~o: test all
     pregnant women for Rh incompatibility, report incidence of Rh
     hemolytic disease and use of Rh immunoglobulin to CDC, thereby
     establishing a national program for monitoring the incidence of
     the disease.

2.   Require federally supported family planning programs to include Rh
     blood typing as a routine part of family planning services.

3.   Encourage Rh testing in all deliveries, miscarriages, or abortions
     paid for with HEW funds and providing of immunoglobulin to women
     who need it.

Department Comments

1.   We concur. CDC is involved in the monitoring and surveillance of Rh
     disease. It offers consultation to States upon request by helping
     them determine the nature of the problem and offering possible
     solutions.

2.   We concur. Rh type should be considered an ess.ential component of
     every girl's personal health knowledge. Rh typing could be provided
     through several Federal programs as are immunizations currently. If a
     client has not been typed and presents herself at a family planning clinic,
     this will be included as a routine part of family planning services.

3.   We concur. Programs supported through Title V funds are encouraged
     to include prevention of Rh disease in all programs. Title XIX
     standards are set by States and while the Department urges compre-
     hensive service availability, the decision ultimately rests with
     the States.

GAO RECOMMENDATIONS

GAO recommends that the Secretary of HEW:

1.   Fix responsibility for (1) collecting results of studies of parenting
     education and early intervention techniques and programs that have
     used these preventive measures and (2) evaluating their success.

2.   Identify (1) the areas in most need of study and (2) the .most
     effective and cost beneficial methods of prevention.
                                                               APPENDIX I
APPENDIX I

3.   Disseminate information developed from evaluation of studies and
     programs to other Federal and State agencies for consideration in
     implementing their programs.


Department Comments

These issues will be addressed when the specific focal point in OASH
is designated.

 GAO note:     Deleted material refers to matters not discussed
               in this final report.  Page references in this
               appendix may not correspond to page numbers in
               the final report.




                                      96
APPENDIX II                                                    APPENDIX II




                 PRESIDENT'S COMMITTEE ON MENTAL RETARDATION
                             WASHINGTON, D.C. 20201

                                      February 15, 1977




     Mr. Gregory Ahart, Director
     Human Resources Division
     United States General
        Accounting Off ice
     441 G Street, N.W.
     Rocm 6864
     Washington, D.C. 20548
     Dear Mr. Ahart:
     The President's carrnittee on Mental Retardation carmends you
     on the recent report "Preventing Mental Retardation: More Can
     Be Done." The report was the subject of a meeting of our Task
     Force on Bianedical Prevention which included representatives
     of the American Association on Mental Deficiency, and the
     National Association for Retarded Citizens.
     The Task Force was thus able to respond verbally to Mr. Frank
     Ackley of your staff.

     In addition we have shared the report with all Ccnmittee
     Manbers as a way of keeping than informed on this vital subject.

     The GA.O staff ms:ubers wm 'M:>rked on this were "quick sttrlies" who,
     caning fran a discipline outside the realm of mental retardation, were
     able to absorb both the facts and the issues and arrive at sound
     recarmerrlations.

     We cannot anphasize too much that prevention of mental retardation is
     both cost beneficial and cost effective and 'M:>uld under8core the
     report's e:nphasis on this area.

     While we recognize tha.t it was not possible to cover each and every
     one of the rrore than 200 causes of mental retardation the report does
     speak to the categories which group the many specific disorders causing
     mental retardation, and is consistant with the AAMD manual on termi- ·
     nology and classification.




                                    97
APPENDIX II                                                   APPENDIX II


PCMR will be meeting with representatives of each of the Departments
of Federal Government in order that each Department ma.y identify
those programs they will initiate, or expand in order to make significant
contributions to reducing the incidence of mental retardation.

fCMR will also keep up to date on DHE'W's progEess in prevention.

We concur with the recarmendations of the report, and thank you
for the opportunity to review this document.




                                     98
APPENDIX III                                         APPENDIX III

                    PRINCIPAL HEW OFFICIALS

                  RESPONSIBLE FOR ACTIVITIES

                   DISCUSSED IN THIS REPORT

                                         Tenure of off ice
                                         From           To

SECRETARY OF HEW:
     Joseph A. Califano, Jr.         Jan.     1977      Present
     David Mathews                   Aug.     1975      Jan. 1977
     Caspar W. Weinberger            Feb.     1973      Aug. 1975
     Frank C. Carlucci (acting)      Jan.     1973      Feb. 1973
     Elliot L. Richardson            June     1970      Jan. 1973

ASSISTANT SECRETARY FOR HEALTH:
     Julius Richmond                 July   1977        Present
     James F. Dickson III (acting)   Jan.   1977        July 1977
      Theodore Cooper                May    1975        Jan. 1977
     Theodore Cooper (acting)        Feb.   1975        Apr. 1975
      Charles C. Edwards             Mar.   1973        Jan. 197 5
      Richard L. Seggel (acting)     Dec.   1972        Mar. 1973
      Merlin K. Duval, Jr.           July   1971        Dec. 197 2

ASSISTANT SECRETARY FOR HUMAN
  DEVELOPMENT:
     Arabella Martinez               Jan. 1977          Present
     Stanley B. Thomas, Jr,          Aug. 1973          Jan. 1977
     Stanley B. Thomas, Jr. (acting) Apr. 1973          Aug. 1973

ADMINISTRATOR, SOC~AL AND
  REHABILITATION SERVICE:
      Don I. Wortman (acting)        Jan.   1977        Mar.    1977
      Robert Fulton                  June   1976        Jan.    1977
      Don I. Wortman (acting)        Jan.   1976        June    1976
      John A. Svahn (acting)         June   1975        Jan.·   1976
      James S. Dwight, Jr.           June   1973        June    1975
      Francis D. DeGeorge (acting)   May    1973        June    1973
      Philip J. Rutledge (acting)    Feb.   1973        May     1973
    · John D. Twiname                Mar.   1970        Feb.    1973

ADMINISTRATOR, HEALTH CARE
  FINANCING ADMINISTRATION:
     Robert A. Derzon                Apr. 1977          Present
     Don I. Wortman (acting)         Mar. 1977          Apr .. 1977

10217




                               99