Why reinvent the wheel? A behaviour analyst's reflections on pedagogy for inclusion for students with intellectual and developmental disability

The number of children identified as having intellectual or developmental disability is rising worldwide and their education has been found wanting. It has been said that “they simply need better teaching.” At the same time, there is an increasing evidence base that pedagogy that is based on the discipline of behaviour analysis offers the best prospect for individuals diagnosed with autism spectrum disorders. On the basis of this evidence, it is proposed that behaviour analysis should be applied more broadly to improve teaching for all children with intellectual or developmental disability.

Transition staff discuss sex education and support for young men and women with intellectual and developmental disability

Background Young people with intellectual and developmental disability (IDD) get information, education, and support about social and sexual relationships from different sources. Staff are often involved in providing this education and support. We explored if and how this support is offered to young people transitioning to adulthood.Methods Focus groups were conducted with 17 staff from 3 transition services to illicit information about their experiences providing this education and support.Findings A key theme was that staff are “reluctant counsellors.” Although staff provided social and sexual education, they reported being underprepared and relied primarily on their own values as guidance. They did this in full recognition that transition services filled a social gap for participants, blurring the lines between education and social support.Conclusion Further research is needed to inform sexuality and relationship policy and practice during transition to adulthood, as this is a key learning and developmental time for young adults with IDD.

Authors' institutional affiliations in Australian intellectual and developmental disabilities journals: a comparison of two decades

The generation of new knowledge through research can contribute significantly to the improvement of services for individuals with intellectual and developmental disabilities. This study extends a previous study by Sigafoos, Roberts, and Couzens [Aust. N.Z.J. Dev. Disabil. 17 (1991) 331] by examining research productivity in intellectual and developmental disability in Australian journals for 1990-1999. Institutions that published research articles on intellectual and developmental disabilities in Australian journals in the 1990s were identified by noting the affiliations of authors. The most productive institutions were primarily universities in Australia and the United States of America. Publication trends in the decade of the 1990s are compared with trends of the previous decade (1980-1990). (C) 2003 Published by Elsevier Ltd.

Elevated serum triiodothyronine and intellectual and motor disability with paroxysmal dyskinesia caused by a monocarboxylate transporter 8 gene mutation

Monocarboxylate transporter 8 (MCT8 or SLC16A2) is important for the neuronal uptake of triiodothyronine (T3) in its function as a specific and active transporter of thyroid hormones across the cell membrane, thus being essential for human brain development. We report on a German male with Allan-Herndon-Dudley syndrome presenting with severe intellectual and motor disability, paroxysmal dyskinesia combined with truncal muscular hypotonia, and peripheral muscular hypertonia at his current age of 9 years. Additionally, the patient has a lesion in the left putamen region revealed by magnetic resonance imaging and elevated serum T3 levels. The male appeared to have a hemizygous mutation (R271H) in the MCT8 gene that was sequenced directly from genomic DNA and occurred de novo in the maternal germline, as both his mother and his sister were not carriers of the mutation. Ruling out a common polymorphism, 50 normal individuals of the same ethnic background did not harbour the mutation. The identified MCT8 gene mutation (R271H) is very likely to be the genetic cause for neuronal hypothyroidism despite elevated serum T3 levels.

Postdiagnosis personal growth in an Australian population of parents raising children with developmental disability

Background Parenting a child with a developmental disability presents a variety of long-term physical and emotional challenges. When exploring parent wellbeing, the disability field is dominated by a deficit model despite parents reportedly demonstrating coping and resilience. The current study is embedded in a salutogenic theory (Antonovsky, 1979) and explores the potential for parents of children diagnosed with a developmental disability to undergo positive changes. Method Participants were 6 fathers and 27 mothers who completed measures of distress and posttraumatic growth. Results Compared with a number of other Australian samples, participants reported significantly higher levels of posttraumatic growth. Reports of growth did not negate reports of distress. Results also indicated that constructs of distress and growth were independent. Conclusions The research has important implications for disability support services, reminding providers to be cognisant of the potential for growth, as well as distress, thereby permitting an atmosphere conducive to exploring such outcomes.

Development of a new index of balance in adults with intellectual and developmental disabilities

Purposes: The first objective was to propose a new model representing the balance level of adults with intellectual and developmental disabilities (IDD) using Principal Components Analysis (PCA); and the second objective was to use the results from the PCA recorded by regression method to construct and validate summative scales of the standardized values of the index, which may be useful to facilitate a balance assessment in adults with IDD. Methods: A total of 801 individuals with IDD (509 males) mean 33.1±8.5 years old, were recruited from Special Olympic Games in Spain 2009 to 2012. The participants performed the following tests: the timed-stand test, the single leg stance test with open and closed eyes, the Functional Reach Test, the Expanded Timed-Get-up-and-Go Test. Data was analyzed using principal components analysis (PCA) with Oblimin rotation and Kaiser normalization. We examined the construct validity of our proposed two-factor model underlying balance for adults with IDD. The scores from PCA were recorded by regression method and were standardized. Results: The Component Plot and Rotated Space indicated that a two-factor solution (Dynamic and Static Balance components) was optimal. The PCA with direct Oblimin rotation revealed a satisfactory percentage of total variance explained by the two factors: 51.6 and 21.4%, respectively. The median score standardized for component dynamic and static of the balance index for adults with IDD is shown how references values. Conclusions: Our study may lead to improvements in the understanding and assessment of balance in adults with IDD. First, it confirms that a two-factor model may underlie the balance construct, and second, it provides an index that may be useful for identifying the balance level for adults with IDD.

Exploring an increase in allegations, FY96-FY97 : a study by the Office of the Inspector General exploring the increase in allegations of abuse and neglect reported from the Department-operated mental health and developmental disability facilities /

"May 1999"--Letter of transmittal.

UPTAKE OF THE PERIODIC HEALTH EXAM AMONG ADULTS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES FROM 2003 TO 2015

Background: Over the past decade, annual heath exams have been de-emphasized for the general population but emphasized for adults with intellectual and developmental disabilities (IDD). The purpose of this project was to determine if there has been an increase in the uptake of the health exam among adults with IDD in Ontario, to what extent, and the effect on the quality of preventive care provided. Methods: Using administrative health data, the proportion of adults (18-64 years old) with IDD who received a health exam (long appointment, general assessment, and “true” health exam), a high value on the primary care quality composite score (PCQS), and a health exam or high PCQS each year was compared to the proportion in a propensity score matched sample of the general population. Negative binomial and segmented negative binomial regression controlling for age and sex were used to determine the relative risk of having a health exam/high PCQS/health exam or PCQS over time. Results: Pre joinpoint, the long appointment and general assessment health exam definitions saw a decrease and the “true” health exam saw an increase in the likelihood of adults having a health exam. Post joinpoint, all health exam definitions saw a decrease in the likelihood of adults having a health exam. Pre joinpoint, all PCQS measures (high PCQS, long appointment or high PCQS, “true” health exam or high PCQS) saw an increase in the likelihood for adults to achieve a high PCQS or high PCQS/have a health exam. Post joinpoint, all PCQS measures saw a decrease in the likelihood for adults to achieve a high PCQS or high PCQS/have a health exam. Achieving a high PCQS was strongly associated with having a health exam regardless of health exam definition or IDD status. Conclusions: Despite the publication of guidelines, only a small proportion of adults with IDD are receiving health exams. This indicates that the publication of guidelines alone was not sufficient to change practice. More targeted measures, such as the implementation of an IDD-specific health exam fee code, should be considered to increase the uptake of the health exam among adults with IDD.

Intellectual and Developmental Status in Children With Hyperphenylalaninemia and PKU Who Were Screened in a National Program

Background: Hyperphenylalaninemia (HPA) and Phenylkeonuria (PKU) are metabolic errors caused by deficiency of phenylalanine hydroxylase enzyme, which results in increased level of phenylalanine. This increase is toxic to the growing brain. Objectives: The purpose of this study was to compare the intellectual and developmental status in HPA and PKU children with normal population in national screening program. Patients and Methods: In a historical cohort study, 41 PKU patients who had the inclusion criteria and 41 healthy children were evaluated. Wechsler preschool and primary scale of intelligence-3rd edition (WPPI-3) was used in order to assess the intellectual status of children 4 years and older and Ages and stages questionnaire (ASQ) was used to assess the developmental status of children 5 years and younger. Results: In intellectual test comparison, the two groups showed significant difference in Wechsler’s performance intelligence score and some performance subscales (P-value < 0.01). In comparison of developmental status, no significant difference was observed between the two groups (P-value > 0.05). Conclusions: Even with early diagnosis and treatment of PKU patients, these children show some deficiencies intellectually compared to normal children. This study emphasizes on necessity for screening intellectual and developmental status of PKU patients so that effective medical or educational measures can taken in case of deficiencies.

Intellectual disability and sexuality : attitudes of disability support staff and leisure industry employees

Background: The attitudes of support staff and others in the community towards the sexuality of individuals with an intellectual disability (ID) have the potential to influence opportunities for normalised life experiences in the area of sexuality. ----- Method: A sample of 169 disability support staff and 50 employees from leisure and services industries completed the Attitudes to Sexuality Questionnaires (Individuals with an Intellectual Disability [ASQ–ID], and Individuals from the General Population [ASQ–GP]). ----- Results: Support staff and leisure workers reported generally positive attitudes towards the sexuality of individuals with an ID, but men were seen as having less self-control than women. Support staff were more cautious in their views about parenting, and both groups considered a lower level of sexual freedom to be desirable for women with an ID compared to women who are developing typically. Conclusions Attitudes of both groups are generally quite positive in relation to ID and sexuality.

“Best for everyone concerned” or “Only as a last resort”? Views of Australian doctors about sterilisation of men and women with intellectual disability

Background  Doctors have the potential to influence opportunities for normative life experiences in the area of sexuality for individuals with intellectual disability (ID). Method  In Study One, 106 doctors completed the Attitudes to Sexuality Questionnaire (Individuals with an Intellectual Disability). In Study Two, 97 doctors completed a modified form of the questionnaire that included additional questions designed to assess their views about sterilisation. Results  Attitudes were less positive about parenting than about other aspects of sexuality, and less sexual freedom was seen as desirable for adults with ID. A surprising number of doctors agreed that sterilisation was a desirable practice. Study Two provided data about the conditions under which sterilisation was endorsed. Most doctors reported they had not been approached to perform sterilisations. Only 12% believed medical practitioners receive sufficient training in the area of disability and sexuality. Conclusions  The findings have implications for training and professional development for doctors.

Diabetes in people with an intellectual disability : a systematic review of prevalence, incidence and impact.

To establish the prevalence and incidence of Type 1 and Type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities.