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PubMed1999

Using an orientation system for indoor travel and activity with persons with multiple disabilities.

PURPOSE: The study assessed the effectiveness of an orientation system, consisting of a programmable control device linked to acoustic and light sources, for facilitating independent indoor travel and activity in two persons with profound intellectual disability and blindness or severe visual impairment. METHOD: The control device was programmed to activate each destination the persons were to reach and the acoustic or light sources leading to it automatically (i.e. after a preset time from the persons reaching the previous destination). One person was exposed to two baseline phases without the system being alternated with two orientation phases with the system; the other person received only one baseline and one orientation phase. RESULTS: Data showed that during the orientation phases, both persons benefited from the use of the system and could reach the destinations successfully and carry out the activities. CONCLUSIONS: The possibility of promoting independent indoor travel and activity in persons with multiple disabilities may have important implications for the condition of these persons and for rehabilitation and care centres.

Acoustic Stimulation↗
PubMed2004

The concept of quality of life: what we know and do not know.

BACKGROUND: Over the past two decades the concept of quality of life (QOL) has increasingly become a focus for research and application in the fields of education/special education, health care (physical and behavioural), social services (disabilities and ageing), and families. METHODS: This article summarizes our current understanding of the construct of individual QOL as it pertains to persons with intellectual disabilities (ID). The article's three major sections discuss what we know, what we are beginning to understand, and what we still do not know about the QOL construct. RESULTS: We currently know the importance of the QOL construct as a service delivery principle, along with its current use and multidimensional nature. We are beginning to understand the importance of methodological pluralism in the assessment of QOL, the multiple uses of quality indicators, the predictors of assessed QOL, the effects of different data collection strategies, and the etic (universal) and emic (culture-bound) properties of the construct. We have yet to understand fully the use of QOL-related outcomes in programme change, how to best evaluate the outcomes of QOL-related services, and how to use the concept of QOL to impact public and disability reform. CONCLUSION: The article concludes with a brief discussion of future challenges related to demonstrating the concept's social validity and positive impact on the lives of persons with ID.

Factor Analysis, Statistical↗
PubMed2006

Hershey Medical Center Technical Workshop Report: optimizing the design and interpretation of epidemiologic studies for assessing neurodevelopmental effects from in utero chemical exposure.

Neurodevelopmental disabilities affect 3-8% of the 4 million babies born each year in the U.S. alone, with known etiology for less than 25% of those disabilities. Numerous investigations have sought to determine the role of environmental exposures in the etiology of a variety of human neurodevelopmental disorders (e.g., learning disabilities, attention deficit-hyperactivity disorder, intellectual disabilities) that are manifested in childhood, adolescence, and young adulthood. A comprehensive critical examination and discussion of the various methodologies commonly used in investigations is needed. The Hershey Medical Center Technical Workshop: Optimizing the design and interpretation of epidemiologic studies for assessing neurodevelopmental effects from in utero chemical exposure provided such a forum for examining these methodologies. The objective of the Workshop was to develop scientific consensus on the key principles and considerations for optimizing the design and interpretation of epidemiologic studies of in utero exposure to environmental chemicals and subsequent neurodevelopmental effects. (The Panel recognized that the nervous system develops post-natally and that critical periods of exposure can span several developmental life stages.) Discussions from the Workshop Panel generated 17 summary points representing key tenets of work in this field. These points stressed the importance of: a well-defined, biologically plausible hypothesis as the foundation of in utero studies for assessing neurodevelopmental outcomes; understanding of the exposure to the environmental chemical(s) of interest, underlying mechanisms of toxicity, and anticipated outcomes; the use of a prospective, longitudinal cohort design that, when possible, runs for periods of 2-5 years, and possibly even longer, in an effort to assess functions at key developmental epochs; measuring potentially confounding variables at regular, fixed time intervals; including measures of specific cognitive and social-emotional domains along with non-cognitive competence in young children, as well as comprehensive measures of health; consistency of research design protocols across studies (i.e., tests, covariates, and analysis styles) in an effort to improve interstudy comparisons; emphasis on design features that minimize introduction of systematic error at all stages of investigation: participant selection, data collection and analysis, and interpretation of results; these would include (but not be limited to) reducing selection bias, using double-blind designs, and avoiding post hoc formulation of hypotheses; a priori data analysis strategies tied to hypotheses and the overall research design, particularly for methods used to characterize and address confounders in any neurodevelopmental study; actual quantitative measurements of exposure, even if indirect, rather than methods based on subject recall; careful examination of standard test batteries to ensure that the battery is tailored to the age group as well as what is known about the specific neurotoxic effects on the developing nervous system; establishment of a system for neurodevelopmental surveillance for tracking the outcomes from in utero exposure across early developmental time periods to determine whether central nervous system injuries may be lying silent until developmentally challenged; ongoing exploration of computerized measures that are culturally and linguistically sensitive, and span the age range from birth into the adolescent years; routine incorporation of narrative in manuscripts concerning the possibility of spurious (i.e., false positive and false negative) test results in all research reportage (this can be facilitated by detailed, transparent reporting of design, covariates, and analyses so that others can attempt to replicate the study); forthright, disciplined, and intellectually honest treatment of the extent to which results of any study are conclusive--that is, how generalizable the results of the study are in terms of the implications for the individual study participants, the community studied, and human health overall; confinement of reporting to the actual research questions, how they were tested, and what the study found, and avoiding, or at least keeping to a minimum, any opinions or speculation concerning public health implications; education of clinicians and policymakers to critically read scientific reports, and to interpret study findings and conclusions appropriately; and recognition by investigators of their ethical duty to report negative as well as positive findings, and the importance of neither minimizing nor exaggerating these findings.

Biomedical Research↗
PubMed2003

Attention deficit hyperactivity disorder: review of ADHD in learning disability: the Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation[DC-LD] criteria for diagnosis.

BACKGROUND: Attention deficit hyperactivity disorder [ADHD)]is believed to be common among people with learning disabilities. Classification systems in current use have presented diagnostic difficulties in this area, when used for people with learning disability (particularly adults). METHODS: A literature search using electronic databases was undertaken, and journals were hand-searched for articles relevant to the diagnosis of mental disorders in adults with intellectual disabilities. RESULTS: There is preliminary evidence that ADHD is more common in this population than among the non-learning-disabled population, and indeed that rates of hyperactivity increase with increasing severity of learning disability. There are also associations between ADHD and certain causal syndromes of learning disability. CONCLUSION: While available evidence suggests that ADHD may be common among children and adults with learning disabilities, research has been hindered by deficits in currently used diagnostic classification systems. With the recent development of criteria for the diagnosis of ADHD in learning-disabled adults, and the publication of these in Diagnostic Criteria for Learning Disabilities/Mental Retardation[DC-LD] there is scope for an increase in the level of interest in the study of ADHD among adults with learning disabilities.

Adult↗
PubMed2000

Significant anticonvulsant side-effects in children and adolescents.

The anticonvulsant (AED) history for 216 children and adolescents with epilepsy was reviewed to determine the incidence and types of significant side effects (SSE) which warranted ceasing the drug (not due to a lack of response or a high dose). All parents of patients with epilepsy seen by the author over a 2 year period (March 1996 - March 1998) were questioned about SSE to previous AEDs, and the child's current therapy was also monitored prospectively to determine SSE. There were 107 girls and 109 boys ranging in age from 3 months - 18 years. Eighty-three patients had been exposed to a single AED while 133 had multiple AED exposures: mean 3.6 drugs; range 2-10 drugs. They were exposed to a total of 568 AEDs with SSE occurring in 15% of drug contacts: 7% due to behavioural changes such as irritability, aggression or hyperactivity; 8% were due to other factors such as a rash, headache, gastrointestinal disturbance or drowsiness. Fifty-seven children (26%) had experienced at least one SSE with 19 (9%) having SSE to more than one AED (range 2-4). Global developmental delay or an intellectual disability (ID) were present in 67 patients, and 27 (40%) of these experienced SSE compared with 30 (20%) of the group with normal cognition. This difference was principally due to the higher incidence of behavioural SSE in the ID group 28% versus 6% for the normal cognition group. Allowing for the higher number of AEDs used in the ID group (implying that their epilepsy was more difficult to control), behavioural SSE were still significantly more likely to occur in this group, i.e. 1: 9.6 drug exposures compared with 1: 31. 8 exposures for the normal cognition group (P<0.001). Monotherapy trials underestimate the true incidence of SSE in clinical practice as 26% of children had experienced at least one SSE and 9% had SSE to more than one AED. Those with ID were three times more likely to have behavioural SSE than children with normal cognition.

Adolescent↗
PubMed2004

The Arab community in Israel coping with intellectual and developmental disability.

The Arab family in Israel is still embedded in the traditional society with extended family support systems, but we see a population in transition influenced by the surrounding society. This paper looks at the different religious attitudes toward the exceptional people in our society (i.e., the family reaction to a child born with intellectual or developmental disability), reviews recent studies on the Arab and Bedouin families in Israel, and presents data on the Arab population in residential care centers. Today, out of 57 residential care centers in Israel for persons with intellectual disability, 13 (22.8%) are providing service to the non-Jewish population. The Arab population constitutes 12-13% of the total residential care population, lower than the 19-20% in the total population. In residential care, the Arab population is characterized by younger children with severe and profound intellectual disability. The informal family support system is still a very important factor in the Arab family in Israel, a fact that we believe should be strengthened by implementing the British and Danish model of nurse home visitation.

Adaptation, Psychological↗
PubMed2007

[Mental health disorders among handicapped children and youth].

Data on the prevalence of mental health disorders among children and youth with hearing disorders, blindness, physical handicaps or intellectual disabilities are reviewed. Problems in parent-child relations and issues in the development of social competence and social participation are discussed as risk factors for emotional social maladjustment. The differentiation between developmental problems resulting from the handicap and mental health problems is a challenging task in practice. Some conclusions for psychopathological assessment of handicapped children and youth are presented.

Adolescent↗
PubMed1998

Prader-Willi syndrome and psychotic symptoms: 2. A preliminary study of prevalence using the Psychopathology Assessment Schedule for Adults with Developmental Disability checklist.

The Psychopathology Assessment Schedule for Adults with Developmental Disability (PAS-ADD) checklist was used to screen for psychotic symptoms among people with Prader-Willi syndrome (PWS) aged 16 years and over. The scoring instructions for the PAS-ADD checklist were modified to take account of knowledge about the behavioural phenotype of PWS. Using modified scoring, 6.3% of the 95 people for whom checklists were completed had a possible psychotic disorder in the month before the assessment was made. The results should be treated as a crude estimate of the prevalence of psychotic symptoms associated with PWS in adult life in view of potential biases in the sample reported. These findings lend some support to the hypothesis that PWS has a non-chance association with psychotic symptoms and that the association is not entirely accounted for by the increased prevalence of psychosis associated with intellectual disability.

Adolescent↗
PubMedDate not supplied

Assessment of terms to describe mental retardation.

There is currently debate among professionals in the area of mental retardation/developmental disabilities regarding the use of, and a possible replacement for, the term mental retardation. Using the semantic differential technique, 284 participants drawn from various Midwestern populations completed assessments of several terms used to describe the condition known as mental retardation (e.g., intellectual disability) as well as the person with the condition (e.g., mentally challenged) and other disabilities (e.g., physically disabled). Assessments were made on three factors: evaluation, activity, and potency. Results indicated that although all of the terms were generally assessed neutrally, the term Mentally Challenged emerged as the most positive particularly compared to evaluations of the other investigated terms. Moreover, mentally challenged was evaluated as significantly more positive compared to the term physically disabled but was similarly evaluated as the term visually disabled. Implications of the results are discussed.

Adult↗
PubMed2002

Factor stability of the Schalock and Keith (1993) Quality of Life Questionnaire.

In the 1990s, there was a significant change in how governments viewed publicly provided services. In the area of disability services, it has been suggested that providers could demonstrate their effectiveness with reference to the quality of life of their clients. One instrument often used in quality of life research for people with intellectual disabilities is the Quality of Life Questionnaire; however, before this instrument can be used with confidence, the reliability of its scores must be demonstrated. We investigated the stability of the four Quality of Life Questionnaire factors over various populations. Three of the four factors were found to be stable. This raises potential concern over the use of the Quality of Life Questionnaire in assessing service providers' effectiveness.

Adolescent↗
PubMed1996

Acute polymorphic psychosis in adults with mild intellectual deficits.

This paper describes two representative cases of acute polymorphic psychotic disorder (APPD) defined in the International Classification of Diseases (ICD)-10 in adults with mild intellectual deficits. The patients showed mild intellectual impairment but had worked diligently for many years without their impairment being noticed by others. Some displayed maladjustments in their childhood and were classified as having intellectual disabilities. With their low self-esteem, precipitating events forced the patients to act inappropriately and, as a result, they became psychotic. Although APPD is supposed to occur without causative stress, an intellectual limitation combined with a certain personality can precipitate such a psychosis. It is noted that APPD might mask intellectual deficit and their precipitating factors and that a relapse could be prevented by advising a member of the patient's family.

Acute Disease↗
PubMed2001

Annotation: conceptions of intelligence.

This paper argues for the scientific utility of the concept "intelligence". In the first section three common arguments against the validity of general intelligence are discussed and dismissed. The second section presents the evidence in favour of the proposition that individual differences in IQ may be based on differences in speed of information processing. However, the third section shows that executive functions, particularly inhibitory processes, represent a more likely basis for the development of intelligence. The theory of the minimal cognitive architecture underlying intelligence and development (Anderson, 1992a) shows how speed and executive functioning might represent two dimensions to g--one an individual differences (within age) dimension based on speed and the other a developmental dimension based on changing executive functioning. In the fourth section this theory is used to generate new insights on the nature of intellectual disability and specific cognitive deficits and to make practical suggestions for educational intervention for low-IQ children.

Cognition↗
PubMed2002

Withholding nutrition on the conscious mentally disabled patient: a review and commentary.

A recent important and poorly publicized legal case in California raised the question of whether the wife of a severely mentally disabled man could intentionally withhold medically supplied nutrition from him on the grounds that it was no longer providing benefits. Rita L. Marker has published a detailed case report and analysis. The readers of the Newsletter on Ethics and Intellectual Disability should know about her analysis. A summary is presented here together with some observations about the issues the case raises. Readers are encouraged to consult the original article: Rita L. Marker, "Mental Disability and Death by Dehydration." National Catholic Bioethics Quarterly 2 (Spring 2002): 125-36. All quotations are from the Marker analysis.

Adult↗
PubMed2005

What do we mean by our community?

For several decades, the disability movement has been working towards what has been variously termed community living, getting an ordinary life, community participation and inclusion. Presented as a major paradigm shift to community membership, the essential and overarching aim has been to create a community where people with disabilities and their families are fully accepted and afforded the same opportunities for participation as non-disabled people. However, the full integration of people with disabilities remains an unrealized ideal. This article suggests that the concept of social capital has the potential to generate improvements in health, education, community care, community regeneration and employment. However, the fundamental opportunities to accumulate social capital for the intellectually disabled are considerable and their existing contributions are often undervalued. Furthermore, as the concept permeates into sociological and political discourse in the UK, its potential to generate further structural inequalities needs to be acknowledged.

Community Mental Health Services↗
PubMed2003

[Epilepsy in patients with cerebral palsy--analysis of frequency and clinical prognosis].

This study was designed to investigate the incidence and prognosis of epilepsy in 109 patients with cerebral palsy and to attempt to correlate these clinical data with the type of palsy. The incidence of epilepsy, the onset of age and the type of first seizure were associated with the regions affected by palsy. A good association exists between tetraplegia and age-dependent epileptic encephalopathy. In patients with cerebral cortical lesions demonstrated by radiological examination, the incidence of epilepsy was significantly increased. The prognosis of epilepsy is not related to the type of palsy. In spastic palsy, the patients with epilepsy showed more severe intellectual disabilities.

Adolescent↗
PubMed1996

A behavioural approach to the treatment of non-retentive encopresis in adults with learning disabilities.

Problems such as encopresis are perceived as "normal' for some populations. For example, within the field of learning disability, little serious study has been devoted to either prevalence or aetiology of encopresis. Treatment issues have been obscured by problems of definition and aetiology. Treatment reports are rare despite the apparent magnitude of the problem, and involve a disproportionate number of cases with a mild intellectual disability or secondary encopresis. The following report describes a reinforcement-based treatment programme for primary, non-retentive encopresis in five young adult men with mainly more severe learning disabilities. Major soiling accidents were eliminated in four out of five cases and substantially reduced in the fifth. Treatment times were long. Issues relating to the use of aversive techniques are discussed, as are the limitations of the present study.

Adolescent↗