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PubMed2001

A parent-completed developmental questionnaire: follow up of ex-premature infants.

OBJECTIVE: Premature infants are at increased risk of developmental disability. Early identification of problems allows intervention to ameliorate or attenuate problems. A reliable screening tool allows triage of children in this high-risk population by identifying those unlikely to need full developmental assessment. To explore the test characteristics of an established parent-completed developmental assessment questionnaire 'Ages and Stages Questionnaire' (ASQ) in follow up of an Australian population of premature infants. METHODOLOGY: One hundred and sixty-seven children born prematurely with corrected ages 12- to 48-months attending the Growth and Development Clinic at the Mater Children's Hospital in Brisbane, Queensland, Australia; 136 questionnaires 'ASQ' were returned completed (81%) and were compared to formal psychometric assessment (Griffith Mental Development Scales for 12- and 24-months, Bayley Mental Development Intelligence Scale for 18-months, McCarthy General Cognitive Intelligence Scale for 48-months). Developmental delay was considered to be present if any of the above psychometric assessments fell below 1.0 standard deviations (SD). The ASQ cut-off used was 2.0 SD (US data derived means and SD). RESULTS: Aggregate results for all age groups comparing ASQ to psychometric assessments as 'gold standards' found the ASQ to have the following test characteristics: sensitivity (90%); specificity (77%); positive predictive value (40%); negative predictive value (98%); % over-referred (20%); % under-referred (1%); % agreement (79%). Likelihood ratio for children failing the ASQ was 3.8 and for passing the ASQ was 0.13. Twenty-one children with known disabilities were included in the study and in 14 of these, the ASQ overall score agreed with the psychometric assessment (67%). CONCLUSION: The high negative predictive value of the ASQ supports its use as a screening tool for cognitive and motor delays in the follow up of ex-premature infants. This would need to be combined with other strategies as part of a comprehensive follow up program for ex-premature infants.

Child, Preschool↗

PubMed1996

A demographic study of polydipsia in an institution for the intellectually disabled.

OBJECTIVE: To measure the prevalence of primary polydipsia in an Ontario institution for residents with developmental disabilities and to explore the associations of polydipsia with age, sex and level of mental retardation. METHOD: All 798 residents were screened for polydipsia using a behavioural questionnaire completed by caregivers. RESULTS: Thirty-three cases were detected: the prevalence among the mobile resident population (n = 660) was 5%. We found no association of polydipsia with age, sex, or level of mental retardation. CONCLUSIONS: Physicians should be aware of polydipsia because it is common among residents with moderate, severe, and profound mental disability. Unless screened for specifically, polydipsia may go unrecognized and may place the residents with mental handicap at risk for serious acute and chronic complications.

Adult↗

PubMed1998

Recent mortality patterns in California.

Mortality among people with developmental disabilities was reviewed using recent data obtained from the California Department of Developmental Services. The time interval for this report was 1991-1995. We defined two study cohorts: one beginning in January 1991 and a second in April 1993. The latter period represented the years of implementation of the Coffelt settlement. Our primary interest was in the Coffelt period cohort. Statistically significant association with increased rates of mortality was found for community residence. A trend of declining mortality was noted for the community facilities from 1991-1995, but not for the developmental centers.

Adolescent↗

PubMed2005

Post-traumatic stress disorder in young people with intellectual disability.

BACKGROUND: Post-traumatic stress disorder (PTSD) is common and treatable. There is extensive research on people of average intelligence yet little on individuals with developmental disabilities. METHODS: We report two people with intellectual disability (ID) who experienced PTSD. The relevance of their developmental difficulties, social and communication profiles, attentional skills, and causes of these, to their presentations is discussed. RESULTS: Both individuals have fragile X syndrome and severe ID. One has Diagnostic and Statistical Manual - 4th Edition (DSM-IV) autistic disorder; the other DSM-IV attention deficit-hyperactivity disorder. They experienced developmental and psychological regressions, new challenging behaviours and exacerbations of existing ones coincident with emotional trauma. PTSD symptoms and phenomena were identifiable despite intellectual and communicatory impairments. CONCLUSION: Presentation of PTSD is influenced by degree and cause of ID, social circumstances, social and communicatory skills, nature and timing of traumatic experience and subsequent management. The paucity of literature suggests it is missed frequently in individuals with ID who risk having problems misattributed to other causes with potential for inappropriate interventions.

Adolescent↗

PubMed1990

The life expectancy of profoundly handicapped people with mental retardation.

BACKGROUND: The life expectancy of people with mental retardation is shorter than that of the general population. Exact estimates of the length of survival for mentally retarded persons at especially high risk are not available, however. METHODS: We collected data on mortality and other factors for 99,543 persons with developmental disabilities, including mental retardation, who received services from the California Department of Developmental Services between March 1984 and October 1987. Three subgroups were selected on the basis of the four characteristics identified in previous studies as the best predictors of mortality among mentally retarded people (deficits in cognitive function, limitations on mobility, incontinence, and inability to eat without assistance). In all three subgroups, the subjects had severe deficits in cognitive function and were incontinent; the subjects in subgroup 1 (n = 1550) were immobile and required tube feeding; those in subgroup 2 (n = 4513) were immobile but could eat with assistance; those in subgroup 3 (n = 997) were mobile (but not ambulatory) and could eat with assistance. Life tables were generated for each of the three subgroups. RESULTS: Immobile subjects were found to have a much shorter life expectancy than those who could move about. Those who also required tube feeding (subgroup 1) had a very short life expectancy (i.e., four to five additional years). Those who could eat if fed by others (subgroup 2) had an average life expectancy of approximately eight additional years. In contrast, those who were mobile though not ambulatory (subgroup 3) had a life expectancy of about 23 additional years. CONCLUSIONS: Severe mental retardation is associated with a decrease in life expectancy, particularly for those who were immobile.

Activities of Daily Living↗

PubMed1998

Evaluation and long-term treatment of aberrant behavior displayed by young children with disabilities.

We trained parents to conduct functional analyses and functional communication treatment for 28 young children with developmental disabilities who displayed aberrant behavior. Of this sample, 22 parents conducted treatment for at least 3 months and 11 for 1 year. We conducted single-case analyses of the results of assessment and treatment. The functional analysis identified social functions (positive and negative reinforcement) for 86% (24 of 28) of the children. Treatment resulted in a pre/post decrease in aberrant behavior averaging 87% across the range of children, with the greatest decrease occurring at 3 months. Appropriate social responding increased, on average, by 69% across the range of children. Decreases in aberrant behavior were demonstrated in all children, and all except one child displayed increased social behavior during treatment. On a measure of parent-rated treatment acceptability, ranging from 1 (not at all acceptable) to 7 (very acceptable), the average overall acceptability was 6.35.

Behavior Therapy↗

PubMed2001

Employment, parenting, and well-being among mothers of children with disabilities.

The influence of employment on parenting stress among mothers of 5-year-old children with developmental disabilities and the influence of parenting demands (i.e., caregiving difficulty and behavior problems) and family support on their work quality and absenteeism from work was examined. No significant associations were found between employment status and parenting demands, family support, or stress for the sample as a whole. Among employed mothers, those who rated their jobs as interesting reported significantly less parenting stress when they experienced low or mean levels of parenting demands. Mothers' interest in work did not moderate the negative influence of high levels of parenting demands on stress. Finally, parenting demands increased absenteeism but had no effect on work quality. Implications of these findings are discussed.

Absenteeism↗

PubMed2000

The prognosis of children with hydrocephalus and congenital heart disease.

The association of congenital hydrocephalus and heart disease in children is infrequent, but may present considerable dilemmas in management. This report describes the treatment and prognosis of 11 children with both clinical problems. There were 5 males and 6 females. Hydrocephalus occurred following aqueductal stenosis in 5 children and the Dandy-Walker malformation in 3. Three children were diagnosed with idiopathic hydrocephalus. Ten children underwent cerebrospinal fluid diversion procedures for control of hydrocephalus. Five children received pharmacological therapy for cardiac disease; 4 children required surgical correction. Two children died from medical conditions; 2 families declined treatment. Follow-up from 2 to 7 years in the remaining 7 children demonstrated moderate or severe neurodevelopmental disability in 5. One child at 2 years of age showed borderline developmental disability while 1 child is developing normally at 10 years of age. Overall the occurrence of symptomatic hydrocephalus and heart disease in the perinatal period resulted in mortality or neurodevelopmental disability in 9/11 children.

Child↗

PubMed1991

Pediatric feeding disorders.

Feeding problems occur in children who have normal development, who have failure to thrive, and who have developmental disabilities. This article focuses on the latter two groups. The characteristics and developmental concerns include family characteristics, parent-child interactions, cognitive development, and oral-motor development. The evaluation process for children with feeding problems should include an interdisciplinary approach with a medical, nutritional, occupational therapy, and behavioral evaluation. The behavioral treatments include the Premack principle, time-out plus reinforcement, and negative reinforcement. Future research should focus on the parent-child interaction process in both mealtime and nonmealtime situations, along with demonstrating parents' and teachers' ability to implement mealtime treatment protocols.

Behavior Therapy↗

PubMed2005

Identifying the core competencies of community support providers working with people with psychiatric disabilities.

The study was intended to identify core competencies for community support providers working with people with psychiatric disabilities. Using multiple methods developed from previous research in the field of developmental disabilities, 18 consumers receiving services and 16 staff members from two mental health community support programs identified a list of 68 competencies that included personal attributes, knowledge, and skills. Based on a card sort task, 34 consumers receiving services and 34 support workers from six mental health community support programs rated 59 of the 68 competencies as being either absolutely necessary or desirable. Results of a second card sort task found that a majority of competencies identified as being needed pre-employment were personal attributes consistent with adopting a person-centered approach. Competencies categorized as to be learned on the job involved special knowledge and skills specific to working with people with psychiatric disabilities. The range of personal attributes, knowledge, skills represented in the identified competencies reflects the complexity of contemporary mental health community support. Findings are indicative of the need for specialized training and supervision that has not been typically available in the community mental health sector.

Employment↗

PubMed2005

New models for improving oral health for people with special needs.

The number of people with special needs is increasing dramatically. In this context, people with special needs refer to people who have difficulty having good oral health or accessing oral health services because of a disability or medical condition. Among these groups, the number of people with developmental disabilities and the emerging population of aging "baby boomers with teeth" are demonstrating dramatic growth. People in these groups have significantly more dental disease than the general population. It is already difficult to impossible for many people with special needs to obtain oral health services. Under the current system of care, this situation will only get worse. The characteristics of a new model, which can better address the oral health problems of people with special needs, are described.

Delivery of Health Care↗

PubMed1997

Preference, choice, and persons with disabilities: a synopsis of assessments, interventions, and future directions.

A recent revolution in service delivery for persons with developmental disabilities encompasses increased client independence and improved quality of life. Specifically, care providers have focused on client expressions of preference, choice-making, and choice availability as key elements of study in this new revolution. We review and critique the primary methods of assessing preference and choice for persons with disabilities, including interviews and questionnaires, pictorial presentations, technological apparati, and direct observation. We also provide an overview of the burgeoning literature on intervention programs designed to enhance choice for this population, such as giving more choice to clients, teaching choice-making skills, and improving staff member skills regarding choice availability. Finally, we provide a synopsis of the future directions in this area that should receive the most attention from researchers and caregivers.

Choice Behavior↗

PubMed2003

Associations between behavior disorders and health status among older adults with intellectual disability.

Few studies have examined the relationship of behavior and health status among aging persons with intellectual and developmental disabilities (I/DD). Behavioral disorders, which often are coincident with functional decline in older persons with I/DD, may be more related to medical morbidity than previously reported. This cross-sectional study examined the association between health status and behavior disorders with increasing age in a cohort of 60,752 adults with I/DD clustered into four adult-age groupings (21-44, 45-59, 60-74, and >74). Age grouping data suggested an association between morbidity and increased likelihood of behavior symptoms in all but the oldest age grouping. The magnitude of the association and trend varied by specific disease across age groupings compared to that found in healthy cohorts. About 25% of the adults with I/DD had psychiatric diagnoses and the frequency of such diagnoses did not decrease with age grouping. These results suggest that adverse health status may increase the likelihood of persistent behavioral disturbances in older persons with I/DD. Moreover, behavioral disorders may be sentinels for occult medical morbidity, which in turn may be responsive to intervention.

Adult↗

PubMed1992

Perceptions of pediatricians' helpfulness: a national study of mothers of young disabled children.

A national sample of 503 mothers of young children (up to six years of age) with developmental disabilities was surveyed to determine the extent to which their family pediatricians are helpful in providing information and support. The respondents ranged from lower-middle to upper class, with the mean SES reflective of middle socio-economic status. Their children had a variety of disabilities that qualified them to receive early intervention services. The majority of the mothers found their pediatricians helpful about issues related directly to their child's medical condition. However, few found them helpful with issues relating to the effect of the disability on their child's development, or to their own personal or family needs.

Child↗

PubMed1999

Identification of early self-injurious behaviour in young children with intellectual disability.

Very little is known about the early stages of self-injurious behaviour (SIB) in young children with developmental disabilities, even though there has been a great deal of research into the prevalence, assessment and treatment of well-established SIB in older individuals. In the present initial study, teachers in special schools for children under II years of age with severe intellectual disability and/or autism were asked to identify children who were beginning to show early self-injury (the index group). These children were then matched to classroom controls (of the same ability level and mobility), and teachers were interviewed about the children's behaviours and skills. The index children showed significantly more potential SIB than the control group children, but there was overlap between the groups in terms of percentage duration of potential SIB, suggesting that teachers do not find it easy to identify children with 'early' SIB. The index children's skills and problem behaviours, their sensory impairments and degree of autism did not differ significantly from those of the control group. When all the children showing any potential SIB were pooled together, it transpired that developmental age and degree of mobility were significantly correlated with percentage duration of SIB, suggesting that these characteristics may be important risk markers. The index children were also observed at 3-month intervals at school over the following 18 months and self-injury clearly escalated for some of the index children, while it did not do so for others. Using regression analysis, increases in SIB were shown to be associated only with the degree of concern expressed about the child's behaviour at time I by the teacher, no other variables predicting increases in SIB.

Age Factors↗

PubMed2000

[Prediction of developmental problems and functional disabilities in infancy].

Methods to identify developmental problems in children have been requested for a long time. We wanted to find out whether high scores of cumulative non-optimality during infancy indicated disability or developmental problems. In a prospective study, a population of children (n = 1,217) was followed from pregnancy until the age of four. Medical, motor, and neurological data, as well as information about attention and social interaction were added in a cumulative non-optimality score. Information about family and environment was also included. When the children were four years of age, multiple methods were used to identify those with disability and developmental problems. Complete data were obtained for 926 children. The predictive values of the instrument were based on children diagnosed as functionally disabled at the age of four (n = 32). The sensitivity was 87.5%, specificity 93%, positive predictive value 30.8% and negative predictive value was 99.5%. These values are higher than those of comparable methods. The method could be implemented in the normal Norwegian "child health centre" without difficulty. The discussion in this article focuses on whether or not the method should be implemented in the ordinary health care system.

Abnormalities, Multiple↗

PubMed1996

Respondent and informant accounts of psychiatric symptoms in a sample of patients with learning disability.

This paper investigates differences in the nature and frequency of psychiatric symptoms reported by patients with learning disability and key informants. The study involved psychiatric assessment of 100 patients with learning disabilities and key informants using the Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS-ADD), a semi-structured psychiatric interview developed specifically for people who have a learning disability. There was considerable disagreement between respondent and informant interviews: only 40.7% of cases were detected by both interviews. Respondents were more likely to report on autonomic symptoms and certain psychotic phenomena. Other anxiety and depression symptoms were more frequently reported by informants. The results indicate that it is crucial for sensitive case detection to complete both interviews where possible. If the respondent cannot be interviewed, panic disorder or phobias may be particularly difficult to detect.

Adolescent↗

PubMed1985

Stereotyped behavior of severely disabled children in classroom and free-play settings.

The relationships between stereotyped behavior, object manipulation, self-manipulation, teacher attention, and various developmental measures were examined in 101 severely developmentally disabled children in their classrooms and a free-play setting. Stereotyped behavior without objects was positively correlated with self-manipulation and CA and was negatively correlated with complex object manipulation, developmental age, developmental quotient, and teacher attention. Stereotyped behavior with objects was negatively correlated with complex object manipulation. Partial correlations showed that age, self-manipulation, and developmental age shared unique variance with stereotyped behavior without objects.

Adolescent↗