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PubMed2004

Management of psychiatric issues in patients with intellectual disability.

The psychiatric treatment of people with intellectual disability and mental illness has progressed substantially. Not only have our interventions improved, the willingness and ability of psychiatrists to provide such care has grown enormously. Inclusion of psychiatric residents in this endeavor enhances the likelihood of future treatment interest by them as professionals in their own careers. Meaningful improvement in functional capacity and in reduction of symptom burden is achievable in most patients. Multiple levels of service delivery are adapted readily to care provision for this population when attention is paid to the environment of care and the education and training of staff is addressed. With greater attention now being paid to this population, continued improvement in the quality and capacity of service delivery is on the horizon.

Connecticut↗

PubMed2006

Evaluation of an application for making palmtop computers accessible to individuals with intellectual disabilities.

BACKGROUND: Palmtop computers provide a promising mobile platform to address barriers to computer-based supports for people with intellectual disabilities. This study evaluated a specially designed interface to make navigation and features of palmtop computers more accessible to users with intellectual disabilities. METHOD: The specialised cognitively accessible interface was compared with a standard Windows CE interface. Participants completed a structured set of navigation/computer use tasks using both the experimental and control conditions. Measurements included the amount of assistance needed and errors made in completing the navigation/computer use tasks. RESULTS: Participants (N = 32) made significantly fewer errors (p<.001) and required significantly fewer prompts (p<.001) while using the specialised software interface compared to the mainstream Windows interface. CONCLUSIONS: The research demonstrates the feasibility of using special software design methods, such as linear program flows, error minimisation and the incorporation of repetition and consistency, to improve access to palmtop computers for individuals with intellectual disabilities. Issues related to designing cognitively accessible interfaces are discussed.

Adolescent↗

PubMed2003

[Health Council of the Netherlands' report on contraception in intellectually disabled people].

Recently the Health Council of the Netherlands published a comprehensive report which incorporates juridical, ethical, medical and social aspects directing the judgement and decision-making regarding contraception in people with an intellectual disability. Although professional responsibility is in the hands of medical practitioners, medical guidelines to manage consent issues and to indicate contraception in this population are missing. There are no ethical and legal grounds for enforcing contraception and it comes down to professional accountability in trying to prevent irresponsible parenthood by a convincing dialogue. People with intellectual disabilities are intellectually, physically, socially and economically prone to be vulnerable parents, who need assistance in making deliberate choices to have children and in raising them. There is an urgent need for advanced sexual education and a comprehensive social discussion on contraception for this population. Physicians for intellectually disabled people embrace the committee's recommendations to stimulate public debate, enhance research, develop guidelines and build professional networks to call on.

Adult↗

PubMed2005

Places of social poverty and service dependency of people with intellectual disabilities: a case study in Baltimore, Maryland.

In the United States, post-asylum geographies of people with intellectual disabilities implicate the condition of service dependency in their social impoverishment, here defined as "isolation from the community and lack of real friendships and relationships" (The importance of income. The Self-Determination National Program Office of the Institute on Disability, University of New Hampshire, Concord, 1998, p. 2). Social historical geographies of people with intellectual disabilities, both general and local to Baltimore, Maryland, contextualize how one voluntary service organization re/created service dependency and social poverty of people with intellectual disabilities through residential location decisions.

Baltimore↗

PubMed2005

Blockheads, roundheads, pointy heads: intellectual disability and the brain before modern medicine.

Recent work on the conceptual history of intellectual disability has pointed to a discontinuity in the seventeenth century, identifying the concept as essentially modern in a more radical sense than mental illness or physical disability. However, Galenist accounts of intellectual impairment were clearly connected (via anatomy) to neurology, which could be taken as prima facie evidence that Galenism shares with modern medicine one of its basic explanatory approaches to intellectual disability. Close textual examination does not bear out this counter-claim, at least as far as the conceptual apparatus itself is concerned. However, it does reveal a degree of continuity in the medical mind-set as discourses of monstrosity were transposed from the domain of anatomy to that of post-Cartesian psychology.

Anatomy↗

PubMed2001

The Montreal rehabilitation performance profile: a task-analysis approach to quantify stair descent performance in children with intellectual disability.

OBJECTIVE: To develop a clinical tool to quantify stair descent performance in children with moderate to severe intellectual disability. DESIGN: Item identification, measurement construction, and basic testing of reliability. SETTING: School for children with intellectual disability. PARTICIPANTS: A sample of convenience; 18 children (age range, 5-9 yr) with moderate to severe intellectual disability, but who were ambulatory. INTERVENTION: The Montreal Rehabilitation Performance Profile (MRPP) measurement tool, which has 4 perceptual-motor elements: movement form, time requirement, proprioceptive cues, and external cues. MAIN OUTCOME MEASURE: Identification of perceptual-motor elements that underlie skilled stair descent and that are directly quantified from standard video recording. RESULTS: Interrater reliability measured by percentage agreement (kappa statistic) was high for 3 elements (80%-100%; kappa =.63) and good for the fourth (67%; kappa =.52). The 4 MRPP elements are plotted on cartesian axes to yield (1) the magnitude of the contribution of each independent element to total performance outcome, and (2) a global measurement of level of functional skill, the Performance Composite Score (PCS). CONCLUSIONS: The MRPP, and associated PCS, provide a valid measure of functional stair descent skill that does not rely on cognitive understanding of the process. This tool could be adapted to measure functional capacity in other clinical populations, including geriatric clients.

Child↗

PubMed1997

The prevalence of gastro-oesophageal reflux disease based on non-specific symptoms in institutionalized, intellectually disabled individuals.

OBJECTIVE: The prevalence of gastro-oesophageal reflux disease (GORD) in randomly selected, institutionalized, intellectually disabled individuals (IQ < 50) in The Netherlands is high. DESIGN: In this study we investigated the prevalence of GORD and reflux oesophagitis (RO) in intellectually disabled individuals specifically selected for symptoms such as: behavioural difficulties such as automutilation, food refusal, fear and restlessness, vomiting, regurgitation and rumination. Predisposing factors were also evaluated. METHODS: One hundred and ten individuals from one institute underwent a 24-h oesophageal pH test and were scored for predisposing factors and non-specific reflux symptoms. A pathological pH test was defined as a pH lower than 4 more than 4.5% of the measured time. Subjects with a pathological pH test (patients) were compared to those with a normal pH test (controls). RESULTS: In seven cases (6.4%) the test failed for technical reasons. In 57 (55.3%) cases a pathological pH test was found. RO was diagnosed in 33 (64.7%) patients. The use of anticonvulsant drugs and cerebral palsy appeared to be predisposing factors, while the non-specific reflux symptoms did not discriminate for GORD. CONCLUSION: The prevalence of GORD was equal in a randomly selected group of intellectually disabled individuals, and in this group, specifically selected on account of possible reflux symptoms. This study confirms that in this particular group, it is nearly impossible to discriminate for the diagnosis of GORD on non-specific reflux symptoms only. However, GORD may be suspected where there are certain predisposing factors, particularly cerebral palsy and use of anticonvulsant drugs.)

Adult↗

PubMed2007

Effect of "missing" information on fast mapping by individuals with vocabulary limitations associated with intellectual disability.

One phenomenon of language development is a dramatic increase in vocabulary size, driven by rapid word learning. For individuals with intellectual disabilities, the size of the lexicon often lags behind what would be expected both for CA and MA. I examined how well individuals with severely limited receptive vocabulary associated with intellectual disability retained a new word-picture map after a single exposure under conditions of varying difficulty. This study was a direct replication of a previous investigation with typically developing preschool children, enabling a direct comparison. Individuals with intellectual disabilities performed equally as well as control children in the initial exposure phase but poorer when asked to remember the initial map in the presence of other novel distracters or labels.

Adolescent↗

PubMed2002

Specialist health services for people with intellectual disability in Scotland.

BACKGROUND: People with intellectual disability (ID) are known to have a high prevalence of health needs, and to require access to specialist health services in addition to primary care and generic secondary care health services. However, there is no national database of each locality's specialist health service provision. Such a record would highlight variation in provision and enable benchmarking. METHOD: A 15-item questionnaire was developed which included questions on ID health services and staffing levels. This was sent to the chief executive of each of the 15 identified National Health Service primary care trusts/health boards which provide ID services in Scotland. The same questionnaire was also sent to the lead clinician/clinical director of each service. The results were converted to per 100 000 population per trust and presented in cumulative frequency tables to allow benchmarking. RESULTS: A response rate of 100% was achieved. The results show a wide range in the type of services provided by each locality in Scotland. Only three services (21%) have completed the process of resettlement. There was a wide-ranging variability in the number of beds/day places and professionals employed per 100 000 population per trust. CONCLUSIONS: There is widespread diversity in the service provision between different parts of Scotland. Geographical distances and responsibilities for service provision to remote and rural communities did not appear to account for these differences.

Adolescent↗

PubMed2005

Submicroscopic deletions and duplications in individuals with intellectual disability detected by array-CGH.

Intellectual disability (ID) affects about 3% of the population (IQ < 70), and in about 40% of moderate (IQ 35-49) to severe ID (IQ < 34), and 70% of cases of mild ID (IQ 50-70), the etiology of the disease remains unknown. It has long been suspected that chromosomal gains and losses undetectable by routine cytogenetic analysis (i.e., less than 5-10 Mb in size) are implicated in ID of unknown etiology. Array CGH has recently been used to perform a genome-wide screen for submicroscopic gains and losses in individuals with a normal karyotype but with features suggestive of a chromosome abnormality. In two recent studies, the technique has demonstrated a approximately 15% detection rate for de novo copy number changes of individual clones or groups of clones. Here, we describe a study of 22 individuals with mild to moderate ID and nonsyndromic pattern of dysmorphic features suspicious of an underlying chromosome abnormality, using the 3 Mb and 1 Mb commercial arrays (Spectral Genomics). Deletions and duplications of 16 clones, previously described to show copy number variability in normal individuals [Iafrate et al., 2004; Lapierre et al., 2004; Schoumans et al., 2004; Vermeesch et al., 2005] were seen in 21/22 subjects and were considered polymorphisms. In addition, three subjects showed submicroscopic deletions and duplications not previously reported as normal variants. Two of these submicroscopic changes were of de novo origin (microdeletions at 7q36.3 and a microduplication at 11q12.3-13.1) and one was of unknown origin as parental testing of origin could not be performed (microduplication of Xp22.3). The clinical description of the three subjects with submicroscopic chromosomal changes at 7q36.3, 11q12.3-13.1, Xp22.3 is provided.

Chromosome Aberrations↗

PubMed2006

Schizophrenia spectrum disorders in people with intellectual disabilities.

PURPOSE OF REVIEW: To examine most recently published studies of schizophrenia spectrum disorders in people with intellectual disabilities. RECENT FINDINGS: Studies that have been published in the review period have advanced understanding of the epidemiology, presentation, assessment, suspected neuropathology, genetics and treatment of, and service issues relating to, schizophrenia spectrum disorders in people with intellectual disabilities. SUMMARY: The number of published studies investigating schizophrenia spectrum disorders in people with intellectual disabilities continues to increase slowly. The evidence base, however, needs to be strengthened, particularly by randomized controlled trials in pharmacotherapy, psychosocial interventions and service delivery.

Antipsychotic Agents↗

PubMed1994

Grieving related to development: a preliminary comparison of three age cohorts of parents of children with intellectual disability.

It is argued that a child with intellectual disability represents an ongoing source of loss and grief for parents. A developmental framework was employed to compare three age cohorts of parents. Grief was operationalized within the affective, behavioural and cognitive domains. Measures of intrusive thoughts, avoidance behaviours, current emotional distress over reminders of time of diagnosis of disability, and intensity of wishing for what might have been were used, collectively, to reflect the parents' grief reactions. As hypothesized, the results indicate no significant age-related differences in the responses of 58 parent dyads but significant gender-related differences. Mothers scored higher than fathers on all measures. However, on the Wishing Scale, there were no significant differences between fathers and mothers. It is concluded that grieving, as defined, is an ongoing feature of rearing a child with intellectual disability and is more intense for mothers than fathers. Results are discussed within the implications for research and practice, with particular reference to the merit of programmes and services which empower parents and strengthen bonds of partnership between parents and professionals.

Adolescent↗

PubMed1999

Long-term follow-up of behavioural treatment for primary encopresis in people with intellectual disability in the community.

Encopresis is a major problem in high-dependency fields such as intellectual disability. Little information is available with respect to either the prevalence or aetiology of encopresis, probably because it is widely regarded as part and parcel of the handicapping condition. Consequently, treatment reports are rare and confined to a small number of case studies. There is a dearth of long-term follow-up on the behavioural treatment of encopresis in the general population, and no long-term follow-up studies are available for the treatment of encopresis in intellectual disability. The present report provides follow-up data for nine out of 10 people with mainly severe intellectual disability who had received behavioural treatment for primary retentive or non-retentive encopresis between 5 and 17 years previously. Six out of the nine subjects for whom data were available were accident-free and a further two clients were very substantially improved. Interestingly, those whose former encopresis was retentive in nature maintained more successfully, despite the severity of their original impaction. The limitations of the present study are discussed.

Adult↗

PubMed2006

Effects of repeated listening experiences on the perception of synthetic speech by individuals with mild-to-moderate intellectual disabilities.

The purpose of this study was to examine whether individuals with intellectual disabilities (n = 18) demonstrate improvement in the perception of synthetic speech as a result of repeated exposure to it. Specifically, effects of training on novel versus repeated stimuli produced by the ETI Eloquence speech synthesizer were analyzed. Results revealed that training and experimental task each played a significant (p values < 0.01) role in the perception of synthetic words and sentences. Further, there was an absence of significant effect (p > 0.01) for stimulus type (i.e., repeated versus novel) suggesting that individuals with intellectual disabilities are able to generalize their knowledge of the acoustic-phonetic properties of synthetic speech to novel stimuli. Data are also presented for typical participants to establish a benchmark condition for the newly developed Eloquence synthesizer.

Adult↗

PubMed1997

The moral status of intellectually disabled individuals.

The moral status accorded to an individual (or class of individuals) helps to account for the weight of the moral obligations considered due to an individual (or class of individuals). Strong arguments can be given to indicate that the moral status accorded, justly or unjustly, to individuals with intellectual disabilities is less than that accorded to those considered intellectually able. This paper suggests that such a view of the moral status of intellectually disabled individuals derives from individualism. Ontological and normative components of individualism are identified. It is shown that individualistic, ontological criteria for personhood compromise the integrity of "dependent" individuals. And it is shown that the normative component of individualism further compromises the integrity of intellectually disabled individuals. An alternative view of the self is outlined in which dependence features centrally. It is tentatively suggested that such a view of the self may prove more congenial to enhancing the moral status of individuals with intellectual disabilities.

Ego↗

PubMed2004

Late diagnosis in severe and mild intellectual disability in adulthood.

BACKGROUND: The diagnosis of intellectual disability (ID) is highly dependent on a comprehensive personal and family medical history, a complete physical examination and a careful developmental assessment of the patient. Our study intended to: (1) classify the aetiology of mild and severe ID in an adult population of 140 Italian subjects; (2) evaluate the frequency of associated medical conditions; (3) evaluate the age of diagnosis in both groups; and (4) underline the importance of aetiological diagnosis for adult ID patients also. METHODS: The study involved 140 consecutive adult Italian ID inpatients and outpatients neurologically investigated at the Neurological Institute C. Mondino of Pavia Service for Mental Retardation. A total of 80 patients had mild ID (MID group) (39 females, 41 males), mean age 34 years (range 19-61 years), mean IQ = 64 (range 51-75), and 60 had severe ID (SID group) (32 females, 28 males), mean age 30 years (range 19-69 years). They underwent a complete diagnostic work-up that comprised prenatal, perinatal and postnatal history, physical examinations, laboratory investigations, genetic survey and neuroradiological investigations to determine the aetiology of ID and to evaluate the presence of associated medical conditions. RESULTS: ID aetiology was classified as prenatal in 34% of the MID and 28% of the SID group. Perinatal and postnatal events were found in 6% of the MID and in 5% of the SID group. Associated medical conditions were found in 97 patients (47% MID and 26% SID). A genetic diagnosis was possible in 6% of patients above 20 years of age and in 5% of patients above 40 years. A diagnosis of cerebral dysgenesis was possible in 5% of patients above 20 years and 4% of patients above 40 years. CONCLUSIONS: A long interval between the diagnosis of ID and the aetiological definition can be observed in a significant percentage (24%) of our population, leading to unfortunate consequences of late diagnosis: late onset of a specific therapeutic program, genetic counselling that is frequently no more useful, and ineffective prenatal diagnosis, leading to the birth of other affected subjects (for familiar ID).

Adult↗

PubMed1997

Diagnosis of sensory impairment in people with intellectual disability in general practice.

The present authors have participated in the development of a Dutch consensus on the early detection, diagnosis and treatment of hearing and visual impairment in children and adults with intellectual disability. They argue that the early detection of sensory impairment in babies and children with intellectual disability should primarily be a responsibility of paediatricians and youth health physicians. General practitioners should be aware of the necessity of screening and should check whether this has been done when children visit the surgery. It is stressed that the general practitioner should play a more active role in the detection of age-related sensory loss in older adults with intellectual disability, and the assessment of younger adults whose sensory functions have never or incompletely been evaluated. Annual sensory screening is certainly not necessary, but annual otoscopy to detect impacted earwax or unidentified middle ear infection, as well as checks of the proper use of glasses and hearing aids, are suggested. Most adults with mild or moderate intellectual disability can be assessed with methods that are normally used by general practitioners. Uncooperative people should be referred for screening with specialized methods. A low-threshold referral system (e.g. via district expert teams) has been outlined.

Adolescent↗

PubMed1999

'A woman's heaven is at her husband's feet'? The dilemmas for a community learning disability team posed by the arranged marriage of a Bangladeshi client with intellectual disability.

The present case report describes the arranged marriage of a Bangladeshi woman with moderate intellectual disability. It explores some of the social and cultural factors influencing the decision to arrange her marriage, and the dilemmas this presents in terms of bridging cultural differences between professional and lay concerns.

Adult↗