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Studying the Early Identification of


Children’s Developmental Disabilities


Appendix A
Bibliography

SELECTED ABSTRACTS
From the 467 articles in the database, we selected a handful of articles to present in greater detail. These articles were selected because we felt they represented important topics or turning points in the history of the early identification literature including the collective findings of working groups, the development of identification methods, the evaluations of programs, and evidence of existing socio-demographic disparities in early identification. All disorders are represented at least once.

Bailey, Don; Scarborough, Anita; Hebbeler, Kathleen

Families' First Experiences with Early Intervention: National Early Intervention Longitudinal Study. NEILS Data Report.

2003

This report describes several aspects of families' experiences in beginning early intervention services using data from the National Early Intervention Longitudinal Study (NEILS). Funded by the U.S. Department of Education, NEILS is following a nationally representative sample of 3,338 infants and toddlers and their families from the time they enter early intervention services until the children complete kindergarten. The report describes the timing of concerns, diagnosis, and entry into early intervention services, as well as parent perceptions of the identification process, the professionals with whom they interacted, and the resulting plan for goals and services. The findings indicate that the process of entering early intervention services is working well for many families. There also is evidence, however, to suggest that the process does not work equally well for all families and that how well it works is related to characteristics of the child and family. The general findings are summarized first, followed by the findings related to differences among families with different kinds of children and different demographic characteristics. Appended are the methodology and additional data tables.(Contains 3 tables, 12 figures, and 25 references.)

Brandau, Hannes; Pretis, Manfred

Early identification and systemic educational intervention for young children with Attention-Deficit/ Hyperactivity Disorder (AD/HD).

European Journal of Special Needs Education, Vol 19(1), Mar 2004. pp. 17-31.

This paper focuses on the international experience with early identification and intervention for children with AD/HD. Much less is known about AD/HD in two- to five-year-old preschool children than is known for older school-aged youngsters. Despite this lack of knowledge, AD/HD is increasingly recognized in this population and stimulant medication increasingly prescribed to treat it. The lack of control of temperamental patterns in preschoolers seems related to later observations of hyperactivity, attention problems and antisocial behaviors in school-aged children. The emergence and continuity of AD/HD-like behaviors is influenced not only by genetic, pre- and perinatal factors, but also by social context factors. All these influences interact with a child's developmental needs in complex ways according to a systemic bio-psychosocial model. The undiagnosed AD/HD child will often be labeled by parents as difficult and the family scapegoat. Because of the age of the children and the variety of 'normal behavior' in this group, interventions should include systemic, environmental and play-centered approaches.


Bruck, Margaret

The adult outcomes of children with learning disabilities.

Annals of Dyslexia, Vol 37, 1987. pp. 252-263.

Abstract: Four follow-up studies (published 1968-1986) of adults with childhood diagnoses of learning disabilities (LDs) are examined with regard to levels of literacy, academic outcomes, occupational achievements, and social and emotional functioning. LDs persisted into adulthood, although the majority of adults with LDs were well-adjusted and successful in major areas of life. There were no associations between childhood LDs and socially deviant behaviors (e.g., alcoholism, delinquency). The most important antecedents of positive outcome for children with LDs appear to be early identification and adequate intervention.

Chen, Deborah

Visual Impairment in Young Children: A Review of the Literature with Implications for Working with Families of Diverse Cultural and Linguistic Backgrounds. Technical Report.

2001

This report identifies key issues for providing early childhood special education services to young children who are visually impaired and for working with families of culturally and linguistically diverse backgrounds. First, it discusses the incidence of visual impairment and associated disabilities among young children, the process of early identification, and various definitions related to visual impairment. Second, it reviews relevant literature of the effects of visual impairment and associated disabilities on early development. Third, it outlines current intervention practices in relationship to the Division of Early Childhood Recommended Practices (1993). Fourth, it presents implications for serving infants, toddlers, and preschoolers with visual impairments, those with associated disabilities, and their families. The report includes extensive references, an annotated bibliography, and a list of available resources from the CLAS Web site.


Conroy, Maureen A.; Hendrickson, Jo M.; Hester, Peggy P.

Early Identification and Prevention of Emotional and Behavioral Disorders.

Handbook of research in emotional and behavioral disorders. Rutherford, Robert B. (Ed); Quinn, Mary Magee (Ed); Mathur, Sarup R. (Ed); pp. 199-215. New York, NY, US: Guilford Press, 2004.

In this chapter, the authors address early identification and the prevention of EBD. They point out that research offers solid evidence that the majority of severe and chronic problem behaviors demonstrated by school-age children and adolescents emanate from behavior patterns established during the early childhood years. They note that, unfortunately, current identification and intervention policies and practices are often reactive, targeting children once significant behavior problems are well established and more difficult to change. They argue that proactive identification of and intervention with these children earlier in life might prevent the development of EBD. The authors provide a synthesis of key aspects of the early identification, prevention, and intervention literature pertaining to EBD in young children. They address the prevalence of EBD in young children, current identification and service delivery policies and practices, evidence-based intervention practices, and implications for future research and practice.

Coons CE. Frankenburg WK.

Applied biomedical research in mental retardation--prevention.

Applied Research in Mental Retardation. 3(3):221-31, 1982.

Prevention of mental retardation is discussed in terms of etiology and level of prevention (primary, secondary or tertiary). The aim of primary preventive medicine is to avert the disease before its onset. Secondary preventive medicine involves early identification and treatment of a disease to reduce its duration and/or severity. Tertiary prevention limits the degree of disability and fosters rehabilitation in chronic diseases. Prevention of mental retardation relies heavily on primary and secondary preventive techniques. Generally, preventive techniques related to organically caused mental retardation are secondary. Attempts are made to identify and treat impairments which cause deficient mental functioning. Since such impairments can occur at any time and are not always observable, routine developmental screening is recommended. A two-stage developmental screening procedure developed by the authors consists of an abbreviated version of the Denver Developmental Screening Test (DDST) followed by the full DDST when indicated. Primary preventive techniques are appropriate for the prevention of environmentally-caused mental retardation. If negative environmental influences can be identified and eliminated early, socio-cultural mental retardation might be averted or if identified early may be decreased to prevent the retardation process. To meet the need for an environmental screening instrument, the authors developed the Home Screening Questionnaire (HSQ). A combined developmental/environmental screening process is recommended.

Forness, Steven R.; Ramey, Sharon L.; Ramey, Craig T.; Hsu, Chuanchieh; Brezausek, Carl M.; MacMillan, Donald L.; et. al.


Head Start Children Finishing First Grade: Preliminary Data on School Identification of Children at Risk for Special Education.

Behavioral Disorders v23 n2 p111-24 Feb 1998

A study examined the identification rate of mental retardation, learning disabilities, speech or language impairments, and emotional disturbance of 4,161 Head Start children as they completed first grade. Only 26% of the children meeting research diagnostic criteria in these four major categories were identified by the schools.


Glascoe FP.; Dworkin PH.

The role of parents in the detection of developmental and behavioral problems.

Pediatrics. 95(6):829-36, 1995 Jun.

The success of early identification of children with developmental and behavioral problems is influenced by the manner in which pediatricians elicit, recognize, and select clinical information and derive appropriate impressions. Parents are ready sources of clinical information, and they can be asked to provide two broad types of data: appraisals, including concerns, estimations, and predictions; and descriptions, including recall and report. The purpose of this article is to help pediatricians make optimal use of clinical information from parents to increase the accuracy of clinical judgment in detecting children with developmental and behavioral problems. The article reviews 78 research articles and tests relying on parent information from pediatric, psychological, and education literature. There are several formats for eliciting parental information that are superior in terms of accuracy and ease of evocation. Specifically, parents' concerns and good-quality standardized parent report measures such as the Child Development Inventories capitalize best on parents' observations and insights into their children. In combination, these two types of parental information offer an effective method for the early detection of behavioral and developmental problems in primary-care settings.


King TM. Glascoe FP.

Developmental surveillance of infants and young children in pediatric primary care.


Current Opinion in Pediatrics. 15(6):624-9, 2003 Dec.

This article reviews the importance of appropriate developmental surveillance in early childhood, what is known about its effectiveness in current pediatric practice, and ways in which its delivery can be improved to optimize child outcomes. Many infants and young children with developmental delays or risk factors for poor developmental outcomes are not identified by pediatric practitioners in a timely manner. When they are identified, they are often not referred to appropriate early intervention services or early childhood development programs. They are therefore denied the opportunity to benefit from programs documented to have long-lasting benefits for children. Structuring developmental screening around the use of validated parent questionnaires improves the rates at which children with developmental needs are appropriately identified. At the same time, lowering thresholds for referral improves the rates at which children with identified needs receive appropriate services. Pediatric practitioners are uniquely positioned to improve children's developmental outcomes through early identification and referral of children with developmental delays or risk factors for poor developmental outcomes. Unfortunately, inappropriate screening practices, high thresholds for referral, misplaced concerns about causing parental anxiety, and unfamiliarity with local resources all diminish the effectiveness with which many practitioners conduct developmental surveillance. Recent studies show that small changes in screening and referral practices have the potential to greatly improve the effectiveness of developmental surveillance. This, in turn, has the potential to improve lifelong outcomes for children.

Landy, Sarah; Peters, Ray DeV.; Arnold, Robert; Allen, A. Brian; Brookes, Faye; Jewell, Susan


Evaluation of "Staying on Track": An early identification, tracking, and referral system.

Infant Mental Health Journal, Vol 19(1), Spr 1998. pp. 34-58.

The "Staying on Track" project tracked infants, preschoolers, and their families in Brockville, Ontario, Canada for a period of 3 yrs. Public health nurses at preassigned intervals provided information and counseling for families and made referrals to other agencies if problems were judged to be beyond the expertise of the Staying on Track staff. To assess the effectiveness of the program in improving child development, a cohort design was selected to allow development to be assessed for children aged 1 mo to 5-1/2 yrs. Three cohorts and a comparison group were included in the study. Each cohort received different procedures for identification and tracking. Cohort 1 received at least 4 home visits, cohort 2 received 3 clinic visits, and cohort 3 received 1 clinic visit. Intervention and follow-up from these visits included home visits, phone calls, and referrals for all 3 cohorts. Comparing cohort 1 to cohort 2 at 18 mo, highly significant effects were found; few significant differences were found at 3-1/2 yrs between cohort 2 and 3 and very few positive effects were found for 5-1/2-yr-old children who had been in the tracking system since they were 3-1/2 yrs old. Implications of the study for service provision are discussed.


Law J.; Boyle J.; Harris F.; Harkness A.; Nye C.

The feasibility of universal screening for primary speech and language delay: findings from a systematic review of the literature.

Developmental Medicine & Child Neurology. 42(3):190-200, 2000 Mar.

This paper reports on a systematic review of the literature commissioned to examine the feasibility of universal screening for speech and language delay. The results, based on an examination of productivity figures, including positive predictive ability and likelihood ratio, indicate that a number of screening tests are adequate. Sensitivity was generally lower than specificity, and study quality was inversely related to both sensitivity and likelihood ratio, suggesting that it is easier to identify accurately children who do not have language and speech problems than those who do. The review concluded that there is insufficient evidence to warrant the introduction of universal screening at this stage. This paper discusses the type of data that would be needed to address this issue further and recommendations are made for alternative approaches to early identification.

Lock TM.; Shapiro BK.; Ross A.; Capute AJ.

Age of presentation in developmental disability.

Journal of Developmental & Behavioral Pediatrics. 7(6):340-5, 1986 Dec.

It has not been determined whether severity of handicap or other associated factors are more important in determining the age of presentation for developmental disabilities. The relationship between age at presentation and referral source, presenting complaint, diagnosis, and associated factors (medical illness, motor signs, or behavioral disturbances) was examined in 738 consecutive children referred for developmental evaluation during 1982-1983. The nature of the complaint or diagnosis (motor, language, behavioral, or educational) was a far better predictor of age of presentation than the severity of the disorder. The degree of mental retardation did not affect age of presentation. Behavior problems did not affect the age of presentation for school failure or learning disability, but were associated with later presentation for motor delay, language delay, communication disorder, and within all IQ groups. The association of topography of handicap rather than severity with age of presentation should be considered when establishing or evaluating efforts at early identification of developmental disability.


Mercer, Cecil D.; Algozzine, Robert F.; Trifiletti, John J.

Early identification: Issues and considerations.

Exceptional Children, Vol 46(1), Sep 1979. pp. 52-54.

Discusses early identification procedures and reviews major early identification studies that used horizontal and vertical prediction/performance matrix analyses. Results indicate that (a) teacher perceptions and behavioral skill analyses are efficient and useful predictors of school problems; (b) physical indices, developmental histories, and socioeconomic status during infancy are strong preschool predictive measures; (c) stronger predictive results are evident when there is a positive relationship between the prediction index and the criterion instrument; and (d) false positive and false negative identification rates vary considerably depending on the method of analysis used.


Morgan AM.; Aldag JC.


Early identification of cerebral palsy using a profile of abnormal motor patterns.

Pediatrics. 98(4 Pt 1):692-7, 1996 Oct.

The objectives of this study are to determine whether a profile of abnormal motor patterns can identify children with cerebral palsy (CP) in the first year of life. The Early Motor Pattern Profile (EMPP) consists of 15 items reflecting variations in muscle tone, reflexes, and movement that have been organized into a standardized format to provide the clinician with an objective picture of neurologic status. A three-point scoring system was applied to each item, delineating a clearly normal response from a clearly abnormal one and placing all partial or inconsistent responses in the middle. Twelve hundred forty-seven high-risk infants who were enrolled in a neonatal intensive care unit follow-up program were examined at 6 and/or 12 months' corrected age using the EMPP. These infants were followed to at least 36 months of age to distinguish those with CP from those with normal motor outcome or minimal impairment (no CP). Predictive validity of the EMPP at the 6- and 12-month examinations was determined using various pass-fail cutoffs. The optimal cutoff score at 6 months was between 9 and 10, at which the positive predictive value was 89.4, sensitivity was 87.1, and specificity was 97.8. The optimal cutoff score at 12 months was between 3 and 4, at which the positive predictive value was 91.0, sensitivity was 91.5, and specificity was 97.9. The EMPP offers the clinician an effective instrument to identify children in the first year of life who are at greatest risk for the development of CP. The EMPP can be incorporated into a routine health maintenance visit, adding only a few minutes to the process, and has high sensitivity and specificity.

Ni Bhrolchain CM.


Referral patterns to a district Child Development Centre: 25 years experience.

Public Health. 116(5):300-3, 2002 Sep.

This study describes the changes in referral patterns to a district Child Development Centre over 25 y. Referral information was collected prospectively for all referrals seen at the Child Development Centre at Northampton, UK, from 1974 to 1998 inclusive. This unique data set records CDC usage over 25 y in the same district and was collected, until recently, by the same individual. Professional awareness and identification of complex developmental problems appeared to improve over the study period. The data show a gradual rise in referral rates to reach a plateau of between 5.5 and 7.2 referrals per 1000 children under 5 per annum. This level of referral achieves almost complete ascertainment of childhood disability needing statutory assessment by the age of 6 y. The increases in early referrals followed educational intervention with primary health care teams emphasising the importance of early identification and referral.


NIH

Early identification of hearing impairment in infants and young children. [

NIH Consensus Statement. 11(1):1-24, 1993 Mar 1-3.

The National Institutes of Health Consensus Development Conference on Early Identification of Hearing Impairment was convened to address (1) the advantages of early identification of hearing impairment and the consequences of late identification of hearing impairment; (2) the issue of which children should be screened for hearing impairment and when; (3) the advantages and disadvantages of current screening methods; (4) the question of which model for hearing screening and followup is preferred; and (5) future directions for research in diagnosis and management of hearing impairment in infants and young children. Following 2 days of presentations by experts and discussion by the audience, a consensus panel weighed the evidence and prepared their consensus statement. Among their findings, the panel concluded that (1) all infants admitted to the neonatal intensive care unit be screened for hearing loss prior to discharge; (2) universal screening be implemented for all infants within the first 3 months of life; (3) the preferred model for screening should begin with an evoked otoacoustic emissions test and should be followed by an auditory brainstem response test for all infants who fail the evoked otoacoustic emissions test; (4) comprehensive intervention and management programs must be an integral part of a universal screening program; (5) universal neonatal screening should not be a replacement for ongoing surveillance throughout infancy and early childhood; and (6) education of primary caregivers and primary health care providers on the early signs of hearing impairment is essential.


Palfrey JS.; Singer JD.; Walker DK.; Butler JA.

Early identification of children's special needs: a study in five metropolitan communities.

Journal of Pediatrics. 111(5):651-9, 1987 Nov.

In a study of special education programs in five urban school systems, parent interview data for 1726 children revealed how early the children's problems were identified and how the medical system was involved in the diagnosis. Problems included speech impairment, learning disabilities, emotional disturbance, mental retardation, sensory disorders, and physical and health disabilities. Overall, 4.5% of the children's problems were identified at birth, and only 28.7% before the age of 5 years. Variation in age at identification depended on the condition: 1 year for Down syndrome and cerebral palsy versus a 6-year range for mental retardation. Although physicians were most likely to identify the less common, more severe handicaps, they also identified from 15% to 25% of learning disabilities, speech impairments, emotional disorders, hyperactivity, and "other" development problems. The type, severity, and complexity of the condition were significant predictors of physician identification. No racial, socioeconomic, or site biases were associated with whether a physician was first to identify. Age at identification was predicted by the complexity of the problem, the association with other health and developmental concerns, socioeconomic indicators, and whether a physician was involved in the diagnosis. In the absence of clear assumption of responsibility for early identification, much terrain remains uncharted by medical practitioners and the schools. A better systematic sharing of responsibility for the early identification of developmentally disabling conditions is needed.




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