Population outcomes of three approaches to detection of congenital hearing loss

BACKGROUND: Universal newborn hearing screening was implemented worldwide largely on modeled, not measured, long-term benefits. Comparative quantification of population benefits would justify its high cost.

METHODS: Natural experiment comparing 3 population approaches to detecting bilateral congenital hearing loss (>25 dB, better ear) in Australian states with similar demographics and services: (1) universal newborn hearing screening, New South Wales 2003-2005, n = 69; (2) Risk factor screening (neonatal intensive care screening + universal risk factor referral), Victoria 2003-2005, n = 65; and (3) largely opportunistic detection, Victoria 1991-1993, n = 86. Children in (1) and (2) were followed at age 5 to 6 years and in (3) at 7 to 8 years. Outcomes were compared between states using adjusted linear regression.

RESULTS: Children were diagnosed younger with universal than risk factor screening (adjusted mean difference -8.0 months, 95% confidence interval -12.3 to -3.7). For children without intellectual disability, moving from opportunistic to risk factor to universal screening incrementally improved age of diagnosis (22.5 vs 16.2 vs 8.1 months, P < .001), receptive (81.8 vs 83.0 vs 88.9, P = .05) and expressive (74.9 vs 80.7 vs 89.3, P < .001) language and receptive vocabulary (79.4 vs 83.8 vs 91.5, P < .001); these nonetheless remained well short of cognition (mean 103.4, SD 15.2). Behavior and health-related quality of life were unaffected.

CONCLUSIONS: With new randomized trials unlikely, this may represent the most definitive population-based evidence supporting universal newborn hearing screening. Although outperforming risk factor screening, school entry language still lagged cognitive abilities by nearly a SD. Prompt intervention and efficacy research are needed for children to reach their potential.

The right to supported decision-making for people rarely heard

This thesis explored supported decision-making for people with severe or profound intellectual disability. The findings provide guidance to supporters and policy makers to assist people with severe or profound intellectual disability to lead maximally autonomous lives, a clear obligation of Australia under the Convention on the Rights of Persons with Disabilities.

Defining and measuring the outcomes of inclusive community for people with disability, their families and the communities with whom they engage

This paper explores the meaning of ‘inclusive community’ as understood by a major disability service provider in Victoria, Australia. Scope is a major non government agency with 1300 staff, a $50M annual budget and over 4500 clients. The recent adoption of a new Strategic plan for the organisation has focused significant attention on the priority area of building welcoming and inclusive communities. Given this mandate, the organisation has begun research to define and measure outcomes for people with a disability, their families, and the communities with whom they engage, as a result of increased community inclusion. This paper reviews literature on outcomes definition relevant to this task and suggests that outcome measures to date, especially within the field of disability, have offered a set of outcomes that are too limited in their aspiration and breadth. It has been the experience within Scope that people with a disability, including people with intellectual, multiple and complex disabilities, aspire to and experience outcomes across a far broader range of life domains than is currently captured in either existing disability outcome measures or in government policies that frame service delivery. As a result, the paper introduces an emerging outcomes framework which seeks to define outcomes across a range of citizenship domains.

Dual disability : the inherent difficulties in service provision and client management

Dual disability is a particularly important area of study, as the co-occurence of intellectual and psychiatric disability presents signficant challenges to professionals within the health and disability services. Four case studies are presented.

Parental factors associated with obesity in children with disability: a systematic review

The current literature on obesity in typically developing children shows that the family context, and specifically the way parents parent their children are major determinants of childhood obesity. The influence of these factors on obesity in children with disability, however, remains unclear. A systematic review of the literature was undertaken to identify the parental and parenting risk factors associated with obesity in children and adolescents with disability. Articles were identified through Medline, Academic Search Complete, PsycINFO, ProQuest, ISI, CINAHL, Cochrane and Scopus databases. There was no restriction on publication dates. The inclusion criteria were empirical papers that tested associations between parental and parenting risk factors and obesity in children and adolescents with intellectual and other developmental disabilities. Only 11 studies met the selection criteria and subsequently included in this review. Results suggest that obesity in children and adolescents with disability may be associated with socioeconomic status; parents' body mass index, perception and attitude towards their children's weight and physical activity; and levels of activity in both parents and children. Firm conclusions about these associations cannot be reached, however, due to mixed findings and methodological limitations of the studies. Recommendations for future research are provided.

Intersections between disability, type of impairment, gender and socio-economic disadvantage in a nationally representative sample of 33,101 working aged Australians

Background:People with disabilities are socio-economically disadvantaged and have poorer health than people without disabilities; however, little is known about the way in which disadvantage is patterned by gender and type of impairment.Objectives:1. To describe whether socio-economic circumstances vary according to type of impairment (sensory and speech, intellectual, physical, psychological and acquired brain injury) 2. To compare levels of socio-economic disadvantage for women and men with the same impairment typeMethods:We used a large population-based disability-focused survey of Australians, analysing data from 33,101 participants aged 25 to 64. Indicators of socio-economic disadvantage included education, income, employment, housing vulnerability, and multiple disadvantage. Stratified by impairment type, we estimated: the population weighted prevalence of socio-economic disadvantage; the relative odds of disadvantage compared to people without disabilities; and the relative odds of disadvantage between women and men.Results:With few exceptions, people with disabilities fared worse for every indicator compared to people without disability; those with intellectual and psychological impairments and acquired brain injuries were most disadvantaged. While overall women with disabilities were more disadvantaged than men, the magnitude of the relative differences was lower than the same comparisons between women and men without disabilities, and there were few differences between women and men with the same impairment types.Conclusions:Crude comparisons between people with and without disabilities obscure how disadvantage is patterned according to impairment type and gender. The results emphasise the need to unpack how gender and disability intersect to shape socio-economic disadvantage.

The use and abuse of 'community' and 'neighbourhood' within disability research: an exposé, clarification, and recommendation

Almost invariably in the disability literature, the terms 'neighbourhood' and 'community' are used as though they have some commonly understood meaning. They do not, and authors rarely offer a definition. This problem adds opacity to the literature describing people's living environment and the nature of their interaction with others living in the same area. This ambiguity becomes crucial to understanding when these terms are linked to other vague, but emotionally-charged words, such as 'inclusion' or 'integration'. This review presents some of the ways 'neighbourhood' and 'community' may be correctly employed. It also explores the theoretical basis for understanding how and why their use may be misleading. Finally, it is demonstrated that the assumed relevance of neighbourhood participation for life quality has been greatly exaggerated. We recommend that authors carefully define their use of these terms in order to facilitate understanding free from emotional bias.

Psychosocial job quality in a national sample of working Australians: a comparison of persons working with versus without disability

Objectives: There is growing international policy interest in disability employment, yet there has been little investigation of job quality among people working with disability. This study uses Australian national data to compare the psychosocial job quality of people working with versus without disability. Methods: We used 10 annual waves of data from a large representative Australian panel survey to estimate the proportion of the population experiencing poorer psychosocial job quality (overall and by individual 'adversities' of low job control, high demands, high insecurity, and low fairness of pay) by disability status and impairment type. We used logistic regression to examine the pooled cross-sectional associations between disability and job quality, adjusting for age, sex, education and job type. Results: Those working with any disability showed approximately 25% higher odds of reporting one or more adversity at work (OR: 1.23, 95% CI: 1.15, 1.31), and this finding was consistent across impairment types with the exception of intellectual/developmental disability. Estimates were largely unchanged after adjustments. Similar results were found for reporting two or more adversities compared one or more. Conclusions: We observed that working people with a disability in Australia reported systematically poorer psychosocial job quality than those working without disability. These results suggest the need for further research to understand the reasons for these patterns, as well as policy and practice efforts to address this inequity.