Early Childhood Education
Disabilities, Young Children with
According to the CDC (2006), “Developmental disabilities affect approximately 17% of children younger than 18 years of age in the United States.” Children typically progress through a series of developmental stages and milestones as they age. Disruption in these stages or a delay in reaching a milestone can be a sign that a child has a developmental delay or disability. Often a parent may wonder if their child has a developmental delay or disability when they notice differences in their child’s development. However, because of the variability in rates of development and the relevance of developmental stages and milestones within cultural and ethnic groups, physicians and specialists are often reluctant to label a child as having a disability unless there is an obvious physical difference. In the absence of physical indicators or biological markers of disability, health care professionals depend upon assessment of a child’s development, parent reports, behavior, and functional abilities for diagnosis.
There are many diagnostic labels that describe disabilities in young children. Unfortunately, the language used to communicate differences often pathologizes children to the point that they are known by their label rather than by their personalities, preferences, and passions. Many children are identified as having a disability at birth and others are diagnosed later when differences in development become more evident. Birth defects are a primary factor in disabilities in young children. “Birth defects affect about one in every thirty-three babies born in the United States each year. They are the leading cause of infant deaths, accounting for more than 20% of all infant deaths. Babies born with birth defects have a greater chance of illness and long-term disability than babies without birth defects. Developmental disabilities affect approximately 17% of children younger than 18 years of age in the United States” (CDC, 2006). Spina bifida, for example, is present at birth and is generally easily diagnosed based on clear physical indicators.
Other forms of developmental disabilities are not necessarily associated with birth effects. Children with Autism Spectrum Disorders (ASD), although being identified earlier, are often not labeled until after the age of three when discrepancies in the quality of motor, communication and social skills are more easily assessed. Likewise Attention Deficit Hyperactivity Disorder (ADHD) is often diagnosed after a child enters school because difficulties with attention and following routines become apparent in the school context. Other disabilities such as cerebral palsy, cognitive disabilities, learning disabilities, and speech and language delay are diagnosed at different ages depending on the culture, child, family, access to health care, and the competency of the health care professionals.
Increasingly children under the age of five are being diagnosed with mental health issues. The Substance Abuse and Mental Health Services Administration (SAMSHA) states there are numerous causes: exposure to environmental health risks such as high levels of lead and other toxic substances; exposure to violence, such as witnessing or being the victim of physical or sexual abuse, drive-by shootings, muggings, or other disasters; stress related to chronic poverty, discrimination, or other serious hardships; and the loss of important people through death, divorce, or broken relationships (SAMHSA, 2006). Identifying and addressing mental health issues in infants and young children depends upon the competence and knowledge of health care professionals and access to early services and supports.
There are numerous risk factors associated with developmental delays and mental health issues. They include maternal health status, pre- and postnatal history including low birth weight, maternal mental health, socioeconomic status, genetics, head trauma, exposure to heavy metals and toxins, and child abuse and neglect. If these factors are known by physicians and practitioners, there are several screening and diagnostic instruments and procedures that can document and monitor developmental delay. Given the understanding of the effectiveness of early intervention (Guralnick, 2005), there have been numerous efforts to improve early screening and detection of disabilities and/or metabolic disturbances that can lead to disabilities.
Early screening of children occurs in hospitals and physician offices by sampling a child’s blood or giving tests specific to sensory and motor systems. The Apgar Scale which is given immediately after birth measures the degree of prenatal asphyxia based on observations of an infant’s neuromotor status (Apgar, 1953). A low Apgar score is correlated with poorer developmental outcomes. Newborns are also screened through routine metabolic, endocrine and hearing test. Phenylketonuria (PKU) and hypothyroidism, if untreated, are associated with intellectual disabilities. Research has indicated that (1) there are unacceptable rates of underdetection of common other developmental problems in primary care due to lack of training and information about developmental screening tools; inadequate time; inadequate reimbursement; and unfamiliarity with community resources (e.g., Glascoe, 2003; Pelletier and Abrams, 2002); (2) underdetection of vision problems is a serious concern when 79 percent of preschoolers and even greater numbers of younger children are not being screened for amblyopia (American Academy of Pediatrics, 2002), and fewer than half of three-year-olds never have their vision screened using current methods (Hartmann et al., 2000); and (3) early detection of hearing loss is also problematic when only half of children with hearing loss are identified through checklists/questionnaires commonly used by practitioners (AAP, 2003). These gaps in identification frequently result in preventable developmental delays that often impact learning and have lifetime consequences for children and their families.
For children with developmental delays and disabilities, family support should be initiated as well as early services and supports. Early family support is critical for supporting high-quality child-family interactions, family orchestrated experiences that affect language and relationships, play, choice of toys and child care; and health and safety (Dunst, 1995; Guralnick, 2005). Early interventions and supports have proven to be effective in remediating some of the risk factors and preventing the progression of others. Research suggests the earlier the initiation of services and supports, the more positive the child outcomes. Hebb (1949) and Harlow (1958) believed that early experience and education had an impact on the development of the brain and its functions. These theories about the potential of influencing cognition were supported by Vygotsky (1962) who posited the idea that the brain could be influenced by external events. This ongoing process is referred to as neural plasticity.
Once a child has been identified as having a disability or considered at risk, there are several intervention programs available to support the child. Head Start, for example, was established in the United States in the 1960’s, followed by Early Head Start, as a way to help disadvantaged children and their families overcome the influences of poverty and deprivation. It is based on the theory that education and intervention can positively affect child and parent outcomes. There are several major studies that have documented the effectiveness of early intervention. The Milwaukee Project, for example, sought to reduce the impact of “mental retardation” on infants and toddlers and their parents. Mothers who were labeled as intellectually disabled were taught how to stimulate and interact with their babies; and the infants also participated in an early intervention program. At the end of the study, infants in the experimental group scored thirty- five points higher on the Stanford Binet intelligence test. Martin, Ramey and Ramey (1990) reported on the Abecedarian Project, which sought to remediate the effects of psychosocial disadvantage. Both children and their parents were involved in the intervention. Children in the experimental group who received intensive (five days per week/all day) intervention had higher test scores at age 3 and were less likely to be retained in school. These gains were retained over time. Children who had mothers who were labeled more significantly disabled had the greatest developmental outcomes. Other studies, including Project Care (Wasik et al. 1990) and the Infant Health and Development Program (Ramey et al., 1992) provided in-home supports and documented that the intensity of involvement in intervention was positively correlated with better developmental outcomes.
In 1987, the U.S. Congress amended the Individuals with Disabilities Education Act (IDEA) to encourage states to begin educating infants from birth through three years of age and supporting their families in the natural context of their home. Prior to this amendment, referred to as Part H, state education efforts focused on children from three to twenty-one years. This amendment is now referred to as Early Intervention and is Part C of IDEA. Ramey and Ramey (1996) articulate six principles of Early Intervention that emanate from the research literature. They include the importance of: developmental timing, program intensity, direct versus intermediate provision of learning experiences, program breadth and flexibility, individualized differences in program benefits, and ecological dominion and environmental maintenance for development. In a longitudinal study of families who participated in Part C and received early Intervention programming, Bailey et al. (2004) found that families reported several positive outcomes including parents’ improved feelings of competence, improved sense of support and higher expectations for their child’s future.
Guralnick (1998) summarized literature on early interventions and commented that early intervention programs generally result in positive outcomes for children. They prevent decline and in many situations improve overall functioning of children. Much of the success depends, as noted by Ramey and Ramey (1998), on the nature of the program and the characteristics and circumstances of the child and family. In sum, developments over the past thirty years in social policy, program design, and research all have created a much stronger context for young children with disabilities, enhancing the likelihood of their optimal development within families and community-based programs alongside their non-disabled peers. Today, such children attend day care with early services and supports; are served in early intervention and early childhood special education programs operated by public preschool programs, community agencies, and the public education system. See also Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder; Brain Development; Environmental Assessments in Early Childhood Education.
Further Readings: Apgar, V. (1953). A proposal for a new method of evaluation of the newborn infant. Current Researches in Anesthesia and Analgesia 32, 260-267; Bailey, D., A. Scarborough, K. Hebbeler, D. Soiker, and S. Mallik (2004). Family outcomes at the end of early intervention. Available online at http://www.sri.com/ neils/pdfs/FamilyOutcomesReport_01l405.pdf; Brookins, G. K. (1993). Culture, ethnicity, and bicultural competence: Implications for children with chronic illness and disability. Pediatrics, 91(5), 1056-1062; Guralnick, M. (1998). Effectiveness of early intervention for vulnerable children: A developmental perspective. American Journal of Mental Retardation, 102(4), 319-345; Guralnick, M. (2005). Early intervention for children with intellectual disabilities: Current knowledge and future prospects. Journal of Applied Research in Intellectual Disabilities 18, 313-324; Harlow, H. F. (1958). The nature of love. American Psychologist 13, 673-685; Hebb, D. O. (1949). Organization of behavior. New York: Wiley; Martin, S. L., C. T. Ramey, and S. L. Ramey (1990). The prevention of intellectual impairment in children of impoverished families: Findings of a randomized trial of educational day care. American Journal of Public Health 80, 844-847; Ramey, C. and S. Ramey (1992). Early educational intervention with disadvantaged children-to what effect? Applied and Preventive Psychology, 1, 131-140; Ramey, C. T., and S. L. Ramey (1996). Early intervention: Optimizing development for children with disabilities and risk conditions. In M. Wolraich, ed. Disorders of development and learning: A practical guide to assessment and management, 2nd ed. Philadelphia: Mosby, pp. 141-158; Ramey, C. T., and S. L. Ramey (1998). Early intervention and early experience. American Psychologist 53(2), 109-120; Substance Abuse and Mental Health Administration (SAMHSA) (2006). Available online at http://www.mentalhealth.samhsa.gov/publications/allpubs/CA-0004/default.asp; Wasik, B. H., C. T. Ramey, D. M. Bryant, and J. J. Sparling (1990). A longitudinal study of two early intervention strategies: Project CARE. Child Development 61, 1682-1696.
Jan Nisbet and Kate Stimmel