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PubMed2002

Benefits of the Treatment and Education of Autistic and Communication Handicapped Children (TEACCH) programme as compared with a non-specific approach.

BACKGROUND: Two educational treatments were compared, the Treatment and Education of Autistic and Communication Handicapped Children (TEACCH) programme and the integration programme for individuals with disabilities. METHODS: Two groups of eight subjects were matched by gender, chronological and mental age, and nosographic diagnosis (i.e. autism associated with severe intellectual disability, DSM-IV criteria and Childhood Autism Rating Scale scored. The TEACCH programme was applied to the experimental group, while the control group was integrated in regular schools with a support teacher. The Psycho-Educational Profile-Revised and the Vineland Adaptive Behaviour Scale were administered twice with a one-year interval between assessments. RESULTS: The scores of the experimental group increased more than the control group scores. Statistically significant differences were obtained in both groups because of the differences in the two approaches.

Achievement↗
PubMed2002

Sense of coherence in parents of children with different developmental disabilities.

BACKGROUND: The aim of the present study was to test if Antonovsky's theory of sense of coherence can facilitate understanding: (1). individual differences in psychological adaptation in parents of children with intellectual disability (ID); and (2). why parents of children with ID generally experience higher levels of stress and depression than parents of children who develop normally. METHODS: Sense of coherence (SoC) and depression were assessed using the short SoC scale (13 items) and the Beck Depression Inventory in 216 families of children with ID and/or autism, and in 213 control families. RESULTS: It is argued that: (1). parents of children with ID with low SoC are at increased risk for developing depression compared to control parents with low SoC not experiencing this stressor; and (2). the life situation of parenting a child with ID may have a negative impact on parents' SoC levels that, in turn, will make them more vulnerable to experiencing stress and depression. CONCLUSION: The SoC theory is valuable in understanding individual differences in psychological adaptation in parents of children with ID.

Adaptation, Psychological↗
PubMed2001

Deletion of 8p: a report of a child with normal intelligence.

The case is presented of a female infant with a distal deletion of 8p (8p23.1-->pter) whose development was monitored over a 5-year period from 12 months of age. Although previous literature has suggested that 8p deletion is associated with mild to moderate intellectual disability, the child reported here has normal intelligence. Despite initial delays in gross motor and language skills, cognitive development (assessed with the Bayley Scales of Infant Development) and intellectual ability (measured on the Stanford-Binet Intelligence Scale) were within average range. It is argued that the small number of previous case reports may have created a misleading impression of intellectual development in individuals with distal deletions of 8p.

Child↗
PubMed1993

Nordic children with myelomeningocele. Parents' assessments of the handicap and physicians' classifications of the disabilities.

The differences between parents' assessments of their child's handicap and professionals' assessment of disabilities were studied in 486 Nordic children with myelomeningocele aged 4-18 years. Although disability and handicap are conceptually different, agreement between the parents' assessments of the handicap and the degree of disability according to Lorber's classification was found in 51% of cases. The parents' assessments showed close agreement with overall disability according to Lagergren's method in 45% of cases. The factors most strongly associated with parental assessment of the handicap were the child's motor disability, intellectual functioning, faecal and urinary incontinence and the parents' inclination to feel inadequate with respect to the child's needs. Data from professional assessment of disabilities alone are of limited value in understanding the impact of disabilities on the daily life of a child.

Adolescent↗
PubMed1995

A comparison of the Barthel Index and the OPCS disability instrument used to measure outcome after acute stroke.

The Barthel Index has been widely adopted as a measure of disability. The Office of Population Censuses and Surveys (OPCS) disability instrument was developed to provide a comprehensive measure of disability for use in the 1985 survey of disability among adults. Both measures were used on 150 patients surviving 1 year from a consecutive cohort of 246 admissions to hospital with acute stroke. The Barthel Index when summed across categories (as is commonly done), correlated reasonably well with the OPCS disability instrument [-0.73 (p < 0.001) 95% CI 0.64 to 0.80] despite its reliance on arbitrary weights and the omission of categories for communication, vision, hearing and intellectual disability. The broader scope of the OPCS instrument explained most of the floor and ceiling effects seen with the Barthel Index. The Barthel Index continues to have a useful role in stroke rehabilitation when used as a checklist for rehabilitation goals set by clinicians, as a predictor of long-term outcome and as an overall measure of disability or activities of daily living in descriptive studies, randomized controlled trials and audit. However, its floor and ceiling effects may lead to an underestimation of patients' and carers' problems in up to a third of patients. The OPCS instrument may prove to be a more useful outcome measure in randomized controlled trials and audits by virtue of its comprehensive nature.

Activities of Daily Living↗
PubMed2001

Cerebral palsy in Victoria, Australia: mortality and causes of death.

OBJECTIVE: To study the causes of death and the characteristics of children with cerebral palsy that had died over a 25-year period in Victoria, Australia. METHODOLOGY: Names of children that had died were collected from the Victorian Cerebral Palsy Register. Their hospital records were studied and information was gathered about age of death, motor impairment, the presence or absence of associated disabilities and cause of death. RESULTS: One hundred and fifty-five children had died during the period 1970-95. The majority of children had severe spastic quadriplegia, intellectual disability and epilepsy. The predominant cause of death was pneumonia, although for many children who died at home the cause was unknown. CONCLUSIONS: Children with cerebral palsy are a diverse group and those with a severe motor deficit have a reduced life expectancy. Lung disease remains an important cause of morbidity and mortality for this group. Further information about the causes of death is needed, particularly for those children that die at home.

Cause of Death↗
PubMed2001

Making space for the 'intellectual' in geographies of disability.

There is a growing body of work on geographies of deinstitutionalisation and its consequences, but the weight of this scholarship has focussed on people with mental health problems and physically disabled people. With only few exceptions, the 'post asylum geographies' of intellectually disabled people remain neglected by geographers. We advocate a redressing of this imbalance. First, we assess reasons for the relative absence of 'intellectual' considerations in geographies of disability. We then consider ways in which the full spectrum of those with mental differences might be included in geographical research. We conclude that Wolpert's call 25 years ago to 'open closed spaces' is just as applicable to our efforts to conceptually link health, place, and disability, as it is to the material welfare of vulnerable groups in society.

Deinstitutionalization↗
PubMed1994

A behavioural approach to retraining bowel function after long-standing constipation and faecal impaction in people with learning disabilities.

The authors describe a behavioural programme--involving prompted toilet-sitting after meals, rewards for appropriate evacuation and increased fibre--for four people with severe learning disabilities. Although treatment times were long, such training resulted in near-normal bowel function. While this behavioural approach does not ignore the biological aspects of the problem, soiling in intellectually disabled people should not be attributed to the handicapping condition alone. Training at an earlier age should be considered.

Adolescent↗
PubMed1979

Alcohol-induced brain damage and liver damage in young males.

37 alcoholic males under the age of 35 were examined clinically, by psychometric tests, by computerised tomography (CT scans), and by liver biopsy. Factors other than alcoholism that might have caused brain damage were excluded. The prevalence of brain damage in this group was far greater than that of severe liver damage: 59% were intellectually impaired and 49% had cerebral atrophy on CT scan, whereas only 19% had cirrhosis. There was no significant correlations between the degree of liver damage and the degree of intellectual impairment (p greater than 0-05), nor between the degree of intellectual impairment and the presence of cerebral atrophy. The CT scan is an inadequate measure of functional brain damage, psychometric testing is preferable. Other neurological complications of alcoholism were not impressive. Disabling intellectual impairment may be the earliest complication of chronic alcoholism and may arise early in the alcoholic career.

Adult↗
PubMed2003

Promoting sexuality across the life span for individuals with intellectual and developmental disabilities.

Sexuality is a human right that is important to all individuals regardless of age, gender, orientation, or developmental level. Sexuality is closely related to a person's self-concept and self-esteem. Individuals with I/DD have a right to sexuality and sexual expression. Nevertheless, persons with I/DD have historically been denied this right, and many structural and attitudinal barriers exist to their healthy sexuality. Paradigms in sexuality education have shifted toward recognizing sexuality as a human right, a major life resource, and an integral part of one's makeup. To broadly address the development of healthy sexuality for individuals with I/DD, the issue needs to be normalized, not ignored or avoided; which means involving parents, staff, and professionals. Working with parents to overcome parental overprotection and social isolation is critical. Parents can provide opportunities for their sons and daughters to network and form meaningful personal relationships, with peers including encouraging association with peers outside of school or work hours.

Adolescent↗
PubMed2006

Perceptions of communication between people with communication disability and general practice staff.

OBJECTIVE: To explore consultation between people with communication disability and General Practice (GP) staff from the perspectives of both patients and staff. BACKGROUND: Communication disability causes a particular problem in primary care. This issue has not yet been investigated from the perspective of both patients and GP staff. DESIGN: Eight focus groups were held - four with GP practices, two with people with intellectual disability and two with people who had had a stroke. Picture symbols and Talking Mats, a visual communication framework, were used to assist the participants with communication disability. Discussions were audio recorded and analysed thematically. PARTICIPANTS: Twenty GP staff, 12 people with aphasia and six people with learning disability were interviewed. RESULTS: GP staff expressed frustration with not being understood and not understanding but there was a lack of awareness of the reasons behind these difficulties. They all said they mainly relied on carers. They recognized the significance of poor communication in terms of access to health services and agreed that the extent of the problem was greater than they had previously believed. People with communication disability described significant problems before, during and after the consultation. Although some acknowledged that they needed help from their carer, most objected to staff speaking to the carer and not to them. CONCLUSIONS: The main priorities for GP staff were the need for relevant training and simple resources. The main priorities for people with communication difficulty were continuity of staff, trust, better GP staff communication skills, and less reliance on carers.

Communication↗
PubMed1999

[A study on incidence of developmental disabilities in Higashi-Osaka City, Japan, 1988-1992].

A population based statistical analysis was performed of the incidence of developmental disabilities in Higashi-Osaka, a city in Osaka Prefecture with a population of about 500,000. The number of live births during 1988-1992 was 24,980, of whom those with cerebral palsy (CP), severe motor and intellectual disability syndrome (SMIDS), infantile autism, mental retardation (MR) and Down syndrome numbered 30, 21, 26, 268 and 25, respectively. And the respective incidence rates per 1,000 were 1.20, 0.84, 1.04, 10.7 and 1.0. For CP, the percentage of premature children was 63%, higher than in previous reports. Extremely low-birth-weight premature children (< 999 g birth weight) were especially notable at 20% of the CP total. For SMIDS, it is more important to understand the significance of medical care to support sufferers' social lives. High functional autistic children could not be evaluated at our center, though autism accounted for 8.6% of mental retardation. The medical functions of community institutions enable them to perform continuous, population based study of the incidence and situation of developmental disabilities.

Community Health Services↗
PubMed2006

Convergent validity of the aberrant behavior checklist and behavior problems inventory with people with complex needs.

The current study aimed to replicate and extend Rojahn et al. [Rojahn, J., Aman, M. G., Matson, J. L., & Mayville, E. (2003). The aberrant behavior checklist and the behavior problems inventory: Convergent and divergent validity. Research in Developmental Disabilities, 24, 391-404] by examining the convergent validity of the behavior problems inventory (BPI) and the aberrant behavior checklist (ABC) for individuals presenting with multiple complex behavior problems. Data were collected from 69 children and adults with severe intellectual disabilities and challenging behavior living in residential establishments. MANCOVA analyses showed that individuals with elevated BPI stereotyped behavior subscale scores had higher scores on ABC lethargy and stereotypy subscales, while those with elevated BPI aggressive/destructive behavior subscale scores obtained higher scores on ABC irritability, stereotypy and hyperactivity subscales. Multiple regression analyses showed a corresponding pattern of results in the prediction of ABC subscale scores by BPI subscale scores. Exploratory factor analysis of the BPI data suggested a six-factor solution with an aggressive/destructive behavior factor, four factors relating to stereotypy, and one related to stereotypy and self-injury. These results, discussed with reference to Rojahn et al. [Rojahn, J., Aman, M. G., Matson, J. L., & Mayville, E. (2003). The aberrant behavior checklist and the behavior problems inventory: Convergent and divergent validity. Research in Developmental Disabilities, 24, 391-404], support the existence of relationships between specific subscales of the two instruments in addition to an overall association between total scores related to general severity of behavioral disturbance.

Adolescent↗
PubMed2003

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature.

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Achondroplasia↗
PubMed2006

Mandating education of dental graduates to provide care to individuals with intellectual and developmental disabilities.

In 2004, The Commission on Dental Accreditation adopted new standards for dental and dental hygiene education programs to ensure the preparation of practitioners to provide oral health services for persons with special health care needs. The course of action leading to the adoption of the new standards, together with the continuing obstacles of limited government support for dental services and the availability of faculty members to provide the needed dental educational experiences is reviewed. Expanding Health Resources and Services Administration definition of medically underserved areas is presented as one approach to improving the delivery of dental services.

Accreditation↗
PubMed2006

Mental disabilities in Western civilization from Ancient Rome to the Prerogativa Regis.

A preliminary survey of formal concepts of disability from the Twelve Tables of Rome of the 5th century BCE to the Prerogativa Regis in English law of the late 13th century CE is presented. Firm conclusions are restricted by problems in translation and other limitations in available data. However, it appears that the concept of intellectual disability and its distinction from episodic mental illness first emerged in several subcultures of Western civilization during the height of ancient imperial Rome and during the early medieval period in Northern European and Arabic civilization.

England↗