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PubMed2006

6,220 institutionalised people with intellectual disability referred for visual assessment between 1993 and 2003: overview and trends.

AIMS: To summarise the results of visual performance tests and other data of institutionalised people with intellectual disability referred to a visual advisory centre (VAC) between 1993 and 2003, and to determine trends in these data. METHODS: A retrospective medical record review was undertaken of 6,220 consecutive people examined ophthalmologically according to a standard protocol by one VAC that specialised in visual assessment and treatment of people with intellectual disability, between 1993 and 2003. chi2 test for linear trend was used and linear regression coefficients were calculated. RESULTS: The proportion of people aged > or =50 years increased from 19.3% to 34.2% between 1995 and 2003 (p<0.001); the combined figure of severe or profound intellectual disability decreased from 80.0% to 52.6% (p<0.001); the proportion of mobile people increased from 52.1% to 98.0% (p<0.001); the combined proportion of people with visual impairment or blindness decreased from 70.9% to 22.9% (p<0.001), and that of people with visual disorders decreased from 89.6% to 75.3% (p<0.001). Causes of intellectual disability were identified in 58.4% people; 20.8% had Down's syndrome. CONCLUSION: Many ocular diagnoses were found, indicating the need for ophthalmological monitoring. Specialised centres are helpful, because assessment and treatment of people with intellectual disability is complicated and time consuming. Protocols for efficient referral will have to be developed. A major task lies ahead to improve the treatment rates of refractive errors, cataract and strabismus, and to find specific causes of intellectual disability.

Adolescent↗
PubMed2004

Leisure activities, friendships, and quality of life of persons with intellectual disability: foster homes vs community residential settings.

Living in the community does not, in itself, guarantee social integration and inclusion for persons with intellectual disability. Friendships and leisure participation can indicate the beginning of such a process and their impact on quality of life. The present study investigated the quality of life, friendships and leisure activities of persons with intellectual disability who live in community settings or in foster families. Three hypotheses were examined: 1. Persons with intellectual disability who live in foster families have more friends than do those who live in community residential settings. 2. Persons with intellectual disability who live in community residential settings participate in more leisure activities than those who live in foster families. 3. The more friendships and leisure activities in which one is involved, the higher the quality of one's life. The sample consisted of 85 adults with intellectual disability, ranging in age from 18 to 55 years. Forty-five live in community residential settings and 40 live in foster families in Israel. Five questionnaires were used: 1) a demographic questionnaire; 2) Quality of Life Questionnaire, 1990); 3) the Revised UCLA Loneliness Scale; 4) Social Relationships List; and 5) Leisure Activities List. The main findings show no significant differences between the two groups in the number of friendships or feelings of loneliness. Foster residents were more involved and more independent in their leisure activities than were those who live in community residences. An association between friendships, leisure activities and quality of life was partly confirmed. The need for intervention programs and leisure education programs is discussed.

Adolescent↗
PubMed1995

Medical aspects of ageing in a population with intellectual disability: I. Visual impairment.

Visual function of an institutionalized population with intellectual disability, consisting of 70 subjects with a mean age of 70.1 (range 60-92) years at initial evaluation, was assessed during a 10-year prospective longitudinal study. One subject had Down's syndrome and could not be assessed as a result of dementia. Lower visual acuity values were relatively overrepresented as compared to reported data from ageing populations without intellectual disability. In addition, the prevalence of moderate to severe visual impairment was distinctly higher (27.9% in the group studied vs. 0.66% at age 60-69 years to 13% over age 80 in a population without intellectual disability). During follow-up, visual function improved in three out of 61 subjects (4.9%) after cataract surgery, and deteriorated in eight out of 61 subjects (13.1%), even with optimal correction, as a result of cataract and macular degeneration. Causes of excess impairment were congenital or childhood conditions, too-late diagnosis of glaucoma and suboptimal correction of refractive errors in non-cooperative individuals. The present author concludes that it should be possible to reduce excess impairment by an active diagnostic and therapeutic attitude to subjects from a young age onwards.

Age Factors↗
PubMed2002

Long-term physical inactivity and oral health in Finnish adults with intellectual disability.

Physical inactivity is prevalent among patients with intellectual disability. Because little is known about the oral effects of poor mobility, we reviewed the medical and dental charts of institutionalized dentate patients (n = 214; 40.2 years +/- 12.1) of the Special Welfare District of Southwestern Finland. The number of decayed, missing, and filled teeth (DMFT), the number of retained teeth, dental treatment visits, and the type of the first treatment visit were recorded. Physical activity was good in 55% and severely reduced or completely absent in 45% of the patients. The degree of intellectual disability was mild or moderate in 40% and severe or profound in 60% of the patients. The walking patients weighed more (64.3 (19.6) versus 44.4 (14.4) kg; P< 0.001), had fewer secondary diagnoses (1.4 (1.3) versus 2.2 (1.4); P< 0.001), fewer daily medications (4.0 (2.1) versus 4.8 (2.4); P< 0.02), higher DMFT scores (18.5 (8.2) versus 14.8 (9.2); P < 0.05), and more dental treatment visits (2.7 (2.4) versus 2.0 (1.3); P< 0.03) than patients with poor physical activity. Periodontal treatment given as the primary type of dental care was more common among subjects with poor mobility than among those with good motor activity (P < 0.002). Poor physical activity was related to better dental health, higher need for periodontal therapy, and fewer dental visits than in patients with good motor activity.

Adult↗
PubMed2004

Physician attitudes and practices on providing care to individuals with intellectual disabilities: an exploratory study.

A dearth of literature exists regarding barriers to physicians providing medical care to patients with intellectual disabilities. Using an exploratory study, we assessed current physician practice for this population of patients. We mailed a 17-question anonymous survey to primary care physicians (PCPs) in Connecticut. Results showed that many physicians care for patients with intellectual disabilities, but approximately 62% of physicians believed caring for this group to be more difficult compared to other groups. Lack of training and education pertaining to patients with intellectual disabilities, issues of communication, and interruptions in continuity of patient care affect physicians' ability to care for this population. Future research should establish best practices and examine nationwide practices in providing care to patients with intellectual disabilities.

Adult↗
PubMed1999

Utility of modified DCR-10 criteria in the diagnosis of depression associated with intellectual disability.

A retrospective study of 11 inpatients with intellectual disability who received antidepressant treatment over a 12-month period indicated the utility of minor modifications to DCR-10 criteria in the diagnosis of depressive illness. The modifications were made by adding items found in previous research to be behavioural equivalents of depression in people with severe intellectual disability to DCR-10 criteria. The time course of symptom response to antidepressant treatment was documented. All 11 patients had a remission of depressive symptoms, as described by the modified criteria, within 5 weeks of starting antidepressant treatment

Adult↗
PubMed1996

Prevalence of intellectual disability in northern Sydney adults.

The prevalence of intellectual disability, defined as IQ < 70, was determined in a population of adults aged 20-50 years who lived in the northern suburbs of Sydney, Australia. Case finding was carried out in the community, and all those ascertained were interviewed and psychometrically assessed. The overall prevalence was 3.31 per thousand with severe intellectual disability (IQ < 55) 2.19 per thousand and mild (IQ 56-70) 1.12 per thousand. Down's syndrome had a frequency of 0.96 per thousand. Thirty-eight per cent of the total group were living in institutional care.

Adult↗
PubMed2005

Prevalence of intellectual disability and comorbid mental illness in an Australian community sample.

OBJECTIVE: The aim of this study was to bring to light the high prevalence of Australians affected by intellectual disability and comorbid serious mental illnesses. Results from a broad scale study are used to explore the reasons for this regularly overlooked phenomenon. METHODS: This study was based on secondary analysis of data collected in the national 'Disability, Ageing and Carers Survey, 1998'. The analysed data consisted of an Australian wide sample of 42 664 individuals living at home or in cared accommodation. Classification of intellectual disability and comorbid psychosis, anxiety and depressive disorder was based on the International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10). RESULTS: The prevalence of intellectual disability in the sampled population was 1.25%. Of these people 1.3% had a psychotic disorder, 8% had a depressive disorder and 14% had an anxiety disorder that had been present for at least 6 months and was of such severity that it too was disabling. CONCLUSIONS: Findings indicate that people with intellectual disability are at high risk of developing comorbid serious mental illness. Dual diagnosis is however, often overlooked due to difficulties associated with establishing a diagnosis of a mental disorder in people with an intellectual disability, a problem which is heightened when the individual's capacity to participate in a clinical assessment is limited.

Adolescent↗
PubMed1995

Cross-national comparisons of ageing mothers of adults with intellectual disabilities.

Ageing (55+ years) mothers of adults with intellectual disabilities in the Republic of Ireland, Northern Ireland and the United States were compared with respect to three general issues. Firstly, to what extent do the adults in these three countries differ in their level of reliance on their mothers? Secondly, do the mothers differ in the extent to which they have made plans for the future care of their son or daughter with intellectual disabilities? Thirdly, do the mothers differ in physical, social and psychological well-being? These cross-national comparisons were undertaken to examine the extent to which lifelong caregiving has either a common influence on mothers across national boundaries, or, alternatively, whether the cultural context exerts a unique influence on mothers in each country. Findings supported the latter explanation, even when background characteristics were statistically controlled.

Adult↗
PubMed2005

[Adaptive behavior scale for persons with profound intellectual disability].

An adaptive behavior scale for persons with profound intellectual disability was proposed. This scale consisted of 64 items from five areas: interpersonal relationship, perception, expression, interest and play, and daily life. Each item was scored on a 0-2 scale. Forty-eight institutionalized persons (23 males, 25 females) with profound intellectual disability, aged 13-69 (mean 40) years, were examined with this scale. The rating for each item was 0.02-1.81 (mean 0.88). On 69% of the items, estimates were consistent between two care-staffs. The Cronbach's alpha value was calculated to be 0.97, indicating good internal consistency. On the whole, this scale is useful in assessing adaptive behaviors of the subjects.

Activities of Daily Living↗
PubMed2003

Phonological and visuo-spatial working memory in individuals with intellectual disability.

Differences in the storage and rehearsal components of the phonological loop and visuo-spatial sketchpad were investigated in individuals with and without intellectual disability matched on memory span. The group with intellectual disability had specific difficulty in the rehearsal component of the phonological loop, as demonstrated by a weak word length effect compared to the group without intellectual disability. Groups did not differ in the storage component of the phonological loop as indexed by the phonological similarity effect. Also, groups did not differ in the storage or maintenance components of the visuo-spatial sketchpad, having comparable visual similarity and visual complexity effects. However, visual complexity task performance suggested that some aspects of visual processing surpass developmental level expectations for individuals with intellectual disability.

Adolescent↗
PubMed2006

Literacy achievement of children with intellectual disabilities and differing linguistic backgrounds.

BACKGROUND: The aim of the present study was to examine the literacy achievement of 10- to 12-year-old native and non-native children with intellectual disabilities (ID) living in the Netherlands. An intriguing question within this context was whether the second language learning non-native children with ID would show a double disadvantage when compared with their monolingual Dutch peers with no ID. METHODS: Dutch literacy scores in the domains of word decoding, vocabulary, syntax and text were therefore compared for: (1) intellectually disabled native Dutch children; (2) intellectually disabled non-native children; (3) normally developing native Dutch children; and (4) normally developing non-native children. The interrelations between literacy subskills were also compared for native vs. non-native children with ID. RESULTS: The native and non-native students diagnosed as intellectually disabled produced substantially lower literacy scores than their non-disabled peers. The differences between the native (L1) and non-native (L2) children in regular vs. special education were found to depend on the aspect of literacy considered. Word decoding and language skills turned out to significantly predict the children's reading comprehension, although some differences in the strength of relationships could also be evidenced. CONCLUSIONS: The literacy achievement of intellectually disabled children with differing linguistic backgrounds generally falls behind that of their non-disabled peers. For word decoding, the non-native children in regular and special education were generally able to keep up with their native peers. For higher-order literacy abilities closely related to the mental lexicon, sentence processing and text processing, however, significant differences in the performances of the native (L1) and non-native (L2) children in regular vs. special education were found, suggesting a double disadvantage for the non-native children in special education.

Achievement↗
PubMed2003

Schemata and attitudes toward persons with intellectual disability in Japan.

375 parents of pupils were asked to respond to 14 questions on attitudes toward persons with intellectual disability. About 30% of variance in attitude was explained by a set of variables. The effects of schemata concerning person with intellectual disability had a great effect on attitudes toward such persons. The guess of a greater contribution of heredity as the basis of intellectual disability and of fewer such persons in the future of their own families than in the general population was associated with greater negative attitudes toward persons with intellectual disability. As these estimations relate to teachable information, the attitudes might be improved.

Adult↗
PubMed2000

Psychopathology in children with intellectual disability.

Recent advances are reviewed in understanding the heightened prevalence of psychopathology and maladaptive behavior among children with intellectual disability. Researchers have traditionally emphasized measurement and prevalence issues, using either psychiatric assessments or rating scales to identify the prevalence of various problems in children with intellectual disability. Yet the time is ripe to shift directions, and identify more precisely why children are at increased risk for psychopathology to begin with. Although several "biopsycho-social" hypotheses are reviewed, a particularly promising line of work links psychopathology to genetic intellectual disability syndromes. Psychiatric vulnerabilities in several syndromes are reviewed, as are the advantages of phenotypic work for understanding psychopathology among children with intellectual disability more generally.

Adolescent↗
PubMed2006

Is it in the best interests of an intellectually disabled infant to die?

One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should intellectual disability be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect.

Brain Diseases↗
PubMed2002

Move of adults with intellectual disability from institutions to community-based living: changes of food arrangements and oral health.

The policy of deinstitutionalisation, integration and increased independence for individuals with intellectual disability has been accepted in the western part of the world. The aim of the present study was to evaluate the changes in oral health and eating arrangements when intellectually disabled persons move from an institution to integrated living. In 55 subjects the incidence of caries and tooth mortality was compared 4.7 years before and after the change in living arrangements. In addition, changes in oral hygiene routines, eating arrangements and weight were registered. The incidence of caries and tooth mortality was low among individuals with severe and moderate intellectual disability during 4.7 years before as well as after de-institutionalisation, and no differences could be observed between the periods. After 4.7 years of integrated living, 40% of the subjects were estimated to have gained weight. Among those subjects with an estimated decreased weight (13%), the caries incidence was higher compared to other subjects with intellectual disability. Participation in grocery shopping and cooking increased in the integrated living. The increase in weight suggests an impact on general health after almost 5 years of integrated living. No indications of a corresponding influence on oral health in individuals with severe or moderate intellectual disability could be observed after deinstitutionalisation. However, oral health in weight-losing subjects need further investigations.

Adult↗
PubMed1992

Seizures and intellectual disability associated with tuberous sclerosis complex in the west of Scotland.

Of 104 individuals with tuberous sclerosis complex ascertained from the total population of the west of Scotland, 52 were born before and 52 after 1st July 1966. Of those born before. 10 had no seizures, 14 had seizures and no intellectual disability and 28 had seizures and intellectual disability; of those born after, four had no seizures, 18 had seizures and 30 had seizures and a degree of intellectual disability. Infantile spasms or other generalised seizures as the presenting seizure type (N = 29) was strongly associated with intellectual disability; partial seizures as the presenting seizure type (N = 19) was associated with normal development. Although the onset of seizures under one year of age and the presence of multiple seizure types were associated with intellectual disability, the strongest association was with the type of presenting seizure.

Child↗
PubMed2004

Self-perceived equal opportunities for people with intellectual disability.

Despite a growing awareness of the need to promote equal opportunities for people with disabilities, little is known about the self-perceived employment opportunities for people with intellectual disability. This study adopted a qualitative approach to examine the issue of 'equalization of employment opportunities' with 18 young working adults with mild intellectual disability who participated in in-depth interviews. Content analysis and a constant comparative method were adopted for data analysis. Our findings revealed that having employment was regarded as being very important by all participants, and 17 participants had had both positive and negative employment experiences, which were mainly related to the workplace interpersonal relationships and the attitude of employers and co-workers. Eight participants might have experienced discrimination at work when employers and co-workers had misconceptions about people with intellectual disability. This study suggested that strategies such as equal opportunities education, natural support from employers and co-workers and disability education for the general public should be adopted to enable people with intellectual disability to have full participation in employment and social integration.

Adult↗