Disability in America Toward a National Agenda for Prevention (1991) / Chapter Skim
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4 Prevention of Developmental Disabilities
4 Prevention of Developmental Disabilities
Pages 109-146
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From page 109... ...
This chapter will address developmental disabilities in the broader sense of the term, focusing on clinical disorders and diseases that can cause developmental delay. The concepts of prevention discussed here apply to all chronic health conditions that potentially can cause disability in childhood.
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From page 110... ...
and Sirrocco (1987~. The two most common developmental disabilities, mental retardation and cerebral palsy, rank first and fifth as chronic conditions causing major activity limitation among persons of all ages (Table 4-1)
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From page 111... ...
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From page 112... ...
Fragile X Syndrome Fragile X syndrome, a hereditary disorder caused by a chromosomal abnormality, is a common cause of mental retardation among males (Friedman and Howard-Peebles, 1986~. Estimates of fragile X prevalence in males range from 0.5 to 0.9 per 1,000 (Blomquist et al., 1983; Froster-Iskenius et al., 1983; Herbst and Miller, 1980; Sutherland, 1982~.
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From page 113... ...
Hereditary Metabolic disorders Other single-gene abnormalities Chromosomal abnormalities Early alterations of embryonic development Late pregnancy or perinatal conditions Chromosomal changes Intrauterine toxicity Intrauterine infection Structural malformations Premature birth Perinatal hypoxia Infection Acquired Postnatal infection childhood conditions Tay-Sachs disease (>0.01 Phenylketonuria (o.08~2 Maternal phenylketonuria (0.08~3 Congenital hypothyroidism (0.33 Hurler syndrome (0.01~2 Neurofibromatosis (o.02~2 Tuberous sclerosis (0.6~4 Muscular dystrophy (0.02 - 0.1014 Fragile X syndrome (0.7~4 Down syndrome (1.0~ Fetal alcohol syndrome (1.4~i Lead exposure toxicity Congenital rubella syndrome (<0.1~2 Congenital cytomegalovirus infections (3.o) 2 Congenital syphilis (o.2~2 Absence of or shortened limbs (0.5 Hydrocephalus (1.8~i Microcephalus (0.5 Spina bifida (0.4~i Very low birthweight, < 1,500 grams (12~ Central nervous system hemorrhage `6ys Retrolental fibroplasia (o.o7~2 S-minute Apgar < 4 (6~ Perinatally acquired human .
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From page 114... ...
4 Mental retardation of deprivational causes (3-5~4 Autism (0.4~4 Cerebral palsy (2-4~4 Epilepsy (3.5~4 Mental retardation of unknown cause (3-5~4 Learning disorders (50-100~4 aSuperscript numbers indicate the age group used in determining the prevalence estimates, as follows: 1, at birth; 2, early childhood; 3, of all births; 4, childhood; 5, newborn period; 6, age 10; and 7, age 20. SOURCE: Adapted from Cracker, 1989.
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From page 115... ...
The cause of mental retardation and learning disorders in children of women who use alcohol during pregnancy is often not clear. More study is needed to determine the contribution of maternal use of illicit drugs (especially cocaine)
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From page 116... ...
It has also been reported that about a third of children who remained unconscious for more than one week had IQ scores less than 70. Some children, however, have long-term intellectual limitation/mental retardation after comas lasting only three to four days (Heiskanen and Kaste, 1974~.
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From page 117... ...
Conditions of Unknown Origin There are a significant number of developmental disabilities for which the etiology remains obscure. These conditions include epilepsy, autism, and much cerebral palsy and mental retardation.
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From page 118... ...
Thus the prevalence of developmental disability does not equal the prevalence of functional limitation and disability according to the committee's model; other measures are needed to describe the prevalence of functional limitation and disability. Functional limitations associated with developmental disabilities can be described as occurring in three categories: intellectual limitationlmental retardation, mobility limitations, and sensory and communication limitations.
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From page 119... ...
Monitoring their prevalence, in relation to the categories of origin, should be useful in developing intervention strategies and evaluating their effectiveness. intellectual LimitationlMental Retardation Mental retardation (MR)
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c u' tc o 2 ttl ~ ~ .
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Of children with mental retardation, 10 percent have cerebral palsy (and mobility limitation) , 3 percent have serious hearing impairment, 1 percent have visual loss, and 40 percent have emotional or behavioral disorders (Accardo and Capute, 1979~.
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From page 122... ...
Research should include assessments of risks associated with socioeconomic and psychosocial disadvantage, the effec~zveness of habilitafive services, and the identification of secondary conditions. APPROACHES TO PREVENTION The development of successful prevention strategies in recent decades is illustrated by the history of the prevention of kernicterus and cerebral palsy from Rh hemolytic disease.
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From page 123... ...
Thus the battle against this genetically caused developmental disability has progressed from treating a condition to prevent the impairment to preventing the underlying pathology. Many types of interventions reduce the incidence of potentially disabling conditions among infants and children.
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From page 124... ...
Programs that reduce the rate of prematurity prevent some disabling conditions associated with the perinatal category of origins. Medical care, injury control, and family support services are examples of interventions to reduce disabling conditions associated with acquired childhood conditions.
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From page 125... ...
PREVENTION OF DEVELOPMENTAL DISABILITIES 125 TABLE 4-5 Known Risk Factors and Types of Interventions That Reduce the Incidence and Severity of Certain Conditions Condition Risk Factor Type of Intervention HEREDITARY DISORDERS Metabolic disorders Maternal phenylketonuria Maternal diet Program to inform young women with phenylketonuria of preventive dicta Hurler syndrome Family history Genetic interventionsb Laboratory marker Tay-Sachs disease Family history Genetic interventionsb Laboratory marker Screening and pregnancy planningb Ashkenazi Jews Other single-gene abnormalities Muscular dystrophy Family history Genetic interventionsa Laboratory marker Cystic fibrosis Family history Genetic interventionsa Laboratory marker Sickle cell anemia Family history Genetic interventionsb Laboratory marker Hemophilia Family history Genetic interventionsb Laboratory marker Chromosomal abnormalities Fragile X syndrome Family history Genetic interventionsa Laboratory marker Population screening and pregnancy planningC EARLY ALTERATIONS OF EMBRYONIC DEVELOPMENT Chromosomal changes Down syndrome Toxic exposure syndromes Fetal alcohol syndrome Kernicterus Maternal age Laboratory markers Maternal alcohol use Rh hemolytic disease Genetic interventionsb Parenting supportsa Child placementa Family planninga Addiction treatment programsa Rh immune globulins
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From page 126... ...
126 TABLE 4-5 Continued DISABILITY IN AMERICA Condition Risk Factor Type of Intervention Accutane embryopathy Intrauterine infection Congenital rubella syndromes Congenital syphilis Congenital malformations All types Spina bifida Maternal exposure Rubella exposure Maternal infection Maternal diabetes Family history Laboratory marker No maternal vitamin use Labeling and patient informationa Counselinga Immunizationb Prenatal detection and maternal treatments Prenatal medical managementa Genetic interventionsb Periconceptional vitamin supplementation LATE PREGNANCY AND PERINATAL CONDITIONS Premature birth Lack of prenatal Prenatal carea care Adolescent pregnancy Adolescent pregnancy prevention programsa High-risk pregnancy Prenatal carea Tertiary perinatal carea Perinatal hypoxia Infection Perinatally acquired HIV infection Congenital herpes Postnatal infection Bacterial meningitis Poliomyelitis Measles encephalopathy Mumps encephalopathy Childhood injury Unintentional head trauma and spinal cord injury Maternal infection Maternal infection ACQUIRED CHILDHOOD CONDITIONS HFlu immunity Immune status Immune status Immune status Seat belts and child safety seats Counselingb Family planninga Cesarean deliverya Immunizationa Immunizationb Immunizationb Immunizationb Child safety seat legislationb
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From page 127... ...
. swimming Unfenced home pools Local ordinancesa No caretaker CPR CPR training programsa skills Hot water temperature Health educationa Local ordinancesa Environmental lead in paint, dust, and air Abatement in housinga Low-lead gasolinesa Lead-free paintsa Protection in workplaces Impoverished family Head Startb environment Comprehensive day carea Food supplementation for women and childrena Housing programsa Social servicesa aInterventions that are promising and should be implemented, but that should also be monitored closely and evaluated.
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From page 128... ...
This could be accomplished by increasing public awareness of the need for family planning and prenatal care arid by ensuring that every child who has, or is at risk of developing, a developmental disability has access to continuous, comprehensive preventive and acute health services. Genetic Interventions Major advances in genetic screening during the past 20 years have allowed families and physicians to recognize hereditary and other genetic disorders at very early stages, thereby facilitating preventive and treatment decisions for patients earlier in the course of the condition.
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From page 129... ...
State systems of services for children with, or at risk of developing, chronic and disabling conditions must be expanded to provide adequate multidisciplinary care for the prevention of developmental disabilities and associated secondary conditions. Education Head Start and Comprehensive Day Care Head Start programs are designed to provide educational opportunities to three- and four-year-old children from low-income families (Barrett, 1985; Lazar et al., 1982~.
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From page 130... ...
Community leaders also have successfully used public school curricula, newspapers and other media, churches, and the business sector to promote information in priority areas. Health promotion and disease prevention education should be an integral part of the curriculum in public schools and should include the rationale for preventive measures such as immunization and newborn metabolic screening.
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From page 131... ...
Surveillance also should be established to monitor childhood lead poisoning more closely, and governmental health, housing, and environmental agencies should work together to increase the removal of lead paint and dust in high-risk areas. Accessibility and Adaptation Methods of adaptive assistance that reduce secondary conditions are evolving, including personal care attendants, respite care, and a vast array of assistive technology.
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From page 132... ...
Persons with disabling conditions, their families, personal attendants, arid advocates need improved access to information and training in disability prevention. In particular, there is a need for enhanced disability advocacy, information, and support in many rural communities where physical distances limit group interactions.
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From page 133... ...
In addition, the council has worked with the Office of Disease Prevention and Health Promotion to cosponsor a federal task force to coordinate disability prevention planning. The National Coalition for the Prevention of Mental Retardation The National Coalition for the Prevention of Mental Retardation comprises representatives from the President's Committee on Mental Retardation, the American Academy of Pediatrics, the American Association on Mental Retardation, the Association for Retarded Citizens of the United States, and the American Association of University Affiliated Programs.
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From page 134... ...
Centers for Disease Control CDC has an established program in epidemiologic research and birth defects surveillance and is building on this experience to study other developmental disabilities such as mental retardation and cerebral palsy. The birth defects surveillance program has two elements: the Metropolitan Atlanta Congenital Defects Program (MACDP)
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From page 135... ...
A core questionnaire solicits data on perceived health status, limitation of activity, disability days, the incidence of acute conditions, prevalence of selected chronic conditions, and health care utilization. Conditions such as mental retardation, cerebral palsy and sensory impairment are included in the core data, but no information on underlying clinical disorders is gathered.
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From page 136... ...
National institutes of Health National Institute of Child Health and Human Development NICHD, part of the National Institutes of Health (NIH) , has supported research on the genetic and environmental causes of mental retardation, autism, epilepsy, and cerebral palsy (National Institutes of Health, 1989~.
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From page 137... ...
in his widely used unpublished article, "Data Collection for the Evaluation of Mental Retardation Prevention Activities: The Fateful Forty-three." Birth and death records are usually maintained by the state health agency. The number of annual births, by state and region, is often used with established prevalence rates to calculate the expected number of persons with specific potentially disabling conditions.
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From page 138... ...
Maternal use of alcohol during early pregnancy clearly can cause mental retardation. But it is not known why some infants with heavy alcohol exposure during early pregnancy have no discernible impairment.
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From page 139... ...
In addition, efforts to monitor prevention programs and establish uniform definitions and data collection methods will advance program coordination and accountability. Access to Care and Preventive Services The financing of health care and preventive interventions in the United States is complex, involving contributions from public programs, private insurers, and families (Table 4-6~.
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From page 140... ...
Normal care Prior to pregnancy Perinatal Prenatal Maternal serum alpha-fetoprotein Ultrasound and amniocentesis as needed Hospital delivery aAppropriate prenatal care aNewborn screening PKU, thyroid, etc. Family life education Avoidance of teen pregnancy Improved parenting Role of alcohol in pregnancy AIDS education Family planning Childhood A medical "home" for Lead screening each child Developmental screening Immunization Automobile restraints Special care Prior to Perinatal Genetic counseling pregnancy Carrier testing Prenatal Prenatal diagnosis as needed Regional newborn .
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From page 141... ...
administers block grants that provide major support for state prenatal care programs, newborn intensive care units, newborn screening, genetic ser
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From page 142... ...
94-142, P.L. 99-457, and special projects Health Objectives for the Year 2000 Head Start, Administration on Developmental Disabilities Early Periodic Screening, Diagnosis, and Treatment, Medicaid Studies in causation, pathophysiology, and intervention; Mental Retardation Research Centers Studies of interventions to reduce secondary conditions in persons with disabilities; assistive technology research National advocate for federal civil rights legislation for persons with disabilities and for a national disabilities prevention program; introduced concept of prevention of secondary conditions in persons with disabilities Guidelines for state prevention planning, convenes National Coalition on Prevention of Mental Retardation
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From page 143... ...
PREVENTION OF DEVELOPMENTAL DISABILITIES TABLE 4-7 Continued 143 Program Activity STATE PROGRAMS Department of Health Departments of Mental Retardation, Developmental Disabilities, and/or Mental Health Department of Social Services Departments of Welfare, Public Assistance Department of Education Office for Children Office for Prevention City health departments Other city agencies Health care centers Neighborhoods Voluntary and consumer organizations COMMUNITY PROGRAMS PRIVATE PROGRAMS Prenatal care clinics, standards of obstetric care, newborn screening, services for children with disabilities, special chronic disease programs, supports for immunization, lead screening and lead poisoning prevention, developmental screening, genetic counseling, family planning, AIDS programs, automobile restraints, education of the public, professional awareness Early childhood services, family support, counseling Family support, child protection, respite, foster care, adoption Family support, care coordination, Medicaid Family life curricula, school health services, and early intervention programs Standards, certification, advocacy Prevention planning, monitoring, collaborative efforts Immunization, prenatal care, AIDS work, lead programs Recreation, youth programs, transportation Screening, counseling, supports Education, lead poisoning prevention Education of public, counseling services, family planning, parent-toparent services, screening, casefinding, advocacy, pressure on state agencies, and research (March of
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From page 144... ...
all the elements of state government participating in the early education effort for children at risk of or with disability must meet regularly to share in the design of intended services The states participating in the awards from the Disability Prevention Program of the Centers for Disease Control are required to establish advisory committees with multiagency and consumer
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From page 145... ...
The new CDC Disabilities Prevention Program supports the planning, coordination, and evaluation of prevention services. The Office of Human Development Services supports Head Start programs, state Developmental Disabilities Councils, and University Affiliated Programs for persons with developmental disabilities.
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From page 146... ...
Development of coherent career tracts in universities and state health agencies is needed to keep capable researchers in the field. Special professional educational programs are neededfor practitioners and researchers in the area of developmental disabilities.
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