Keith R. McVilly

Attitudes Toward People with Intellectual Disabilities An Australian Perspective

Attitudes in Australia toward people with intellectual disabilities were investigated among students, disability services professionals, and the general population. Three previously validated questionnaires and a measure of respondent self-reported “social desirability” were used. Students and disability services professionals exhibited similar attitudes, with both groups reporting significantly more positive attitudes than members of the general population. More positive attitudes were evident among younger people, people with higher educational attainment, and individuals with a prior knowledge of or regular contact with people with intellectual disabilities. These respondents were less likely to support the principles of eugenics and more likely to support the paradigm of community inclusion. The authors make recommendations concerning the development of policies and strategies to foster the acceptance and inclusion of adults with intellectual disabilities in the wider community. Further studies that include the use of qualitative techniques and target people in the general population are recommended.

Self-Advocates have the last say on friendship

This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self‐advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy‐makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self‐identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research. †In memory of our dear friend Allison J. Dewing‐Moore, died 3 November 2005.

Quality of life issues in the development and evaluation of services for people with intellectual disability

This paper reviews and evaluates issues and methodologies for the assessment and promotion of quality of life (QOL), a multidimensional and dynamic construct frequently used to measure psychological and physiological wellbeing in people with intellectual disability (ID). Objective and subjective components of QOL are critically reviewed, together with the social and psychological factors that impinge on it. The paper discusses contrasting approaches to the assessment of QOL, including process-centered and outcome-centred approaches to evaluation. The difficulties related to eliciting subjective QOL from people with ID are outlined, and the problems inherent in the substituted use of proxy evaluations of QOL for people with ID are discussed. In the absence of relevant research in this group, proxy research findings from health-related literature are related to QOL issues for people with ID. Finally, the paper proposes that future research should directly address the question of concurrence in QOL evaluatio...

The response scale for the intellectual disability module of the WHOQOL: 5-point or 3-point?

OBJECTIVE To deal with the question of whether a 5-point response Likert scale should be changed to a 3-point scale when used in the field testing of people with intellectual disabilities (IDs), which was raised after the pilot study of World Health Organization Quality of Life (WHOQOL)-DIS, a module being developed with the World Health Organization measure of quality of life for disabilities. METHODS Three possible ways were used to generate hypothetical data by merging a 5-point scale into a 3-point scale. The analyses were based on both item response theory and classical measurement theory. The partial credit model for polytomous response was performed for item evaluation; the confirmatory factor analysis was used to check construct validity, the Cronbachs alpha for domain reliability, and correlation analyses for the relationship between the 5-point scale and the generated 3-point scale. RESULTS Most items with a 5-point response scale had disordered response options and/or unequal-length intervals between successive response options; these deficiencies were removed or improved without decline of validity and reliability in the hypothetical data of 3-point scales. CONCLUSION Instead of the 5-point scale, a 3-point scale could be used for IDs in the field test of developing the module WHOQOL-DIS.

Service and support needs of Australian carers supporting a family member with disability at home.

Abstract Background As part of an international, multicentre project, the service and support needs of Australian family carers were investigated. Method A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing quantitative and qualitative analyses. Results On the FNS the most frequently endorsed items were those relating to the need for information about services and, in particular, future, out-of-home accommodation. Similarly, the need for respite services was endorsed by over 80% of respondents. Comments indicated that access to and the quality of respite, day support, and therapy programs were a priority. Conclusions Participants expressed the need for greater access to information. Access to appropriate respite options, together with quality day support and therapy services, remain a priority for family carers.

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.

Staff behaviour and resident engagement before and after active support training

Abstract Background Identifying the factors associated with greater increases in resident engagement has the potential to enhance the effectiveness of active support (AS). Method Observational data from Stancliffe, Harman, Toogood, and McVillys (2007) study of AS were analysed to evaluate amount of staff help, effectiveness of staff help, and staff use of praise. Results Lag analyses showed that antecedent staff help was consistently followed by resident engagement at pre-test. This strong association did not increase significantly at post-test. Resident engagement was more likely to follow staff help than the other way around. There was an increase from pre-test to post-test in help and praise by staff. The higher absolute amount of praise was largely the result of the increase in staff help. Conclusions The amount of staff help, its effectiveness, and use of praise by staff may each be important in increasing engagement. These factors should continue to be the focus of research attention and applied efforts to help ensure active support is consistently effective.

Remaining Open to Quantitative, Qualitative, and Mixed‐Method Designs: An Unscientific Compromise, or Good Research Practice?

Abstract The tension between quantitative and qualitative research paradigms are discussed together with the important contribution of mixed‐method designs, particularly as they are applied in the field of disability studies. Practical issues inherent in research designs involving participants with intellectual disability are explored, including sample building, participant consent, data collection and data analysis. It is concluded, scientific debate needs to move beyond the dialectic of quantitative vs qualitative research to recognise the merit of a variety of different approaches. The question is not which design is inherently superior, but which design, or combination of designs, best addresses the research question.

The Use of Restrictive Interventions in Victoria, Australia: Population Data for 2007-2008.

The once common use of restrictive interventions (the use of restraint and seclusion) for controlling the behaviour of people with an intellectual disability is now coming under greater scrutiny by government and community sector services. Questions are being raised with respect to the clinical efficacy and ethical appropriateness of such interventions (Allen, 2009; McVilly, 2009; Sturmey, 2009). In Victoria, Australia, the Senior Practitioner was established in 2007 by the Disability Act (2006) to protect the rights of people with a disability who are subjected to restrictive interventions or compulsory treatments, and who are in receipt of a disability service funded by the Department of Human Services’ Disability Service. Among other functions, the Senior Practitioner is mandated by the Disability Act (2006) to monitor and review the use of restrictive interventions in Victoria. All disability service providers who use restrictive interventions are required to register with the Senior Practitioner, appoint an Authorised Program Officer (APO) to monitor the use of these practices within their own service, and report the use of chemical and mechanical restraints and seclusion to the Senior Practitioner using the Restrictive Intervention Data System (RIDS). The data included in this paper summarise findings from the first 12 months of operation of the Office of the Senior Practitioner’s RIDS as collated at March 2009. The collection and analyses of these data are important because we know little about the prevalence of the use of restrictive interventions in disability services in Australia and, consequently, have a paucity of evidence to inform the development of policy and monitor practice. If similar data were systematically collected by other jurisdictions and shared in a comparable format, it would be possible to provide national benchmarking around the use of restrictive interventions. This information could assist in promoting and monitoring service quality as well as assist in decision making around the distribution of finite resources to support people who are most at risk of poor outcomes in relation to their health and well-being, and the denial of their human rights. Such crossjurisdictional benchmarking is commonly accepted in other areas of health and community services as an evidence-based mechanism to promote and monitor service quality (e.g., Australasian Rehabilitation Outcomes Centre, http://chsd.uow.edu.au/ aroc/; National Mental Health Seclusion & Restraint Project, http://www.nmhsrp.gov.au/c/mh). However, no such analysis and benchmarking is currently possible across disability services in Australia.

Initiatives to reduce the use of seclusion and restraints on people with developmental disabilities: A systematic review and quantitative synthesis

Contrary to the expectations articulated in public policy, restrictive interventions are commonly used in support services for people with developmental disabilities. This systematic review and quantitative synthesis was undertaken to investigate whether the use of seclusion and restraints on people with developmental disabilities can be reduced. Searches of the Academic Search Complete, CINAHL, MEDLINE, and PsycINFO electronic databases returned 7226 records, of which 11 met the inclusion criteria for this review. A further 3 papers were obtained through scanning the reference lists of those articles included from the initial literature search. All 14 studies were single-subject designs focusing on initiatives to reduce physical or mechanical restraint. Between the baseline and intervention phases, there were mean reductions in the frequency and duration of restraint use of 79% (SD=21%, n=13 subjects from 7 studies) and 45% (SD=58%, n=10 subjects from 6 studies), respectively. For studies in which restraint use to manage agitation and aggression was targeted, there was a 79% (SD=21%, n=13 subjects from 7 studies) decrease in the frequency and a 28% (SD=67%, n=6 subjects from 3 studies) reduction in the duration of restraint. With respect to studies in which restraint use to prevent self-harm was targeted, there was a 71% (SD=34%, n=4 subjects from 3 studies) reduction in restraint use. Effect sizes were calculable, using non-overlap approaches, for 9 of the 14 studies. The magnitudes of the effect sizes suggest that, on average, the interventions were effective in reducing the use of restraints. The effects generated in studies where restraint use for self-harm was targeted were typically more pronounced than those in which restraint use for agitation and aggression was addressed. There were broad variations, however, in the percentage reductions in restraint use and in the magnitudes of the effect sizes. Although the findings of this review are encouraging, more research is needed, in which greater attention must be paid to rigorous research design, application, and analysis.