Intellectual Disability In Australia Research Articles

Looking Back When Moving Forward: Researching Sites of Former Disability Institutions

This article discusses an inclusive research program where colleagues and co-researchers (with intellectual disability) guide and inform future research practice to ensure research is targeted to areas of significance and relevance to them. The research program is about sites of former disability institutions. Many people with intellectual disability in Australia were segregated and forced to live in disability institutions until deinstitutionalisation efforts became mainstream in the late 20th Century. We are a team of four people based in New South Wales, Australia. Our team includes disability advocates and researchers who have contributed to a program of research exploring connections between sites of former disability institutions and contemporary disability rights. In this article, we reflect on conversations about our research undertaken so far and where the research goes from here. We explore five pillars of action informing how research relating to disability institutions can progress: 1. Current use: research exploring erasure of experiences of institutionalisation communicated through educational resources and maps about current use of sites of former disability institutions; 2. Reparative planning processes: research developing frameworks for alternative approaches to planning and heritage processes supporting alternative uses of former sites of disability institutions; 3. Official recognition and redress: research exploring perspectives on governments formally recognising and remedying experiences of people with disability who were institutionalised; 4. Community-led repair and remembrance: research identifying practices for both celebrating advocates with disability and reckoning with and repairing familial and social bonds broken through institutionalisation; 5. Community-inclusive practices: research exploring endurance of institutional practices in disability accommodation in community settings. These five pillars are underpinned by three foundational layers: advancing disability human rights; reckoning with intersections between disability institutions and settler colonialism, other dynamics of oppression, and eugenics; and using inclusive practices.

The uniquely relational role of nurses during the closure of large residential institutions for people with intellectual disability in Australia: A qualitative study

ABSTRACT Background After decades of planning, nurses played a pivotal role in achieving the closure of large residential institutions for people with intellectual disability by 2018. This paper describes the experiences of nurses facilitating the closure of these institutions in New South Wales and Victoria, Australia. Method An interview-based, qualitative study was conducted with twenty-four registered nurses from Australia who had more than twelve months’ experience of caring for people with intellectual disability any time between 1960 and 2016. Results Nurses facilitated transition for residents and their families during devolution. However, nurses’ personal experiences of transition to work in community settings was complicated by inconsistent preparation, uncertainty of employment, and changes in professional status. Conclusions Extensive experience and detailed knowledge of their clients enabled nurses to maximise opportunities for smooth transition out of institutions into community care for people with intellectual disability. Devolution was personally and professionally costly for some nurses.

The future of preventive health care for people with intellectual disabilities in Australia: an analysis of the Disability Royal Commission’s approach, findings and recommendations

The Disability Royal Commission (the Commission) investigated many issues, one of which was whether people with cognitive disabilities, including people with intellectual disabilities, faced systemic neglect in the Australian health system. Using a method of co-design with people with intellectual disabilities, we analysed the Commission’s approach and recommendations about preventive health care. We identified how the Commission’s recommendations can inform the achievement of the National Preventive Health Strategy (the Strategy) for people with intellectual disabilities. We found that a strength of the Commission’s process was the multiple ways it inquired about the experience of accessing preventive health care. However, the inclusiveness of the invitations to participate in the Commission’s work and the location of the public hearings were limitations for key stakeholders. Our analysis also noted that the Commission’s public hearings focused on the supply side of healthcare access (health services) compared to the demand side of access (health users). This was a missed opportunity to learn from health users about their experiences. Two challenges to the implementation of the recommendations include the focus on cognitive disability instead of intellectual disability, and the focus on health care in general, rather than specifically on preventive health care. We also found that the Commission’s recommendations mainly relate to the leadership, governance and funding elements in the Strategy, with a few actions relevant to prevention, partnerships, information, research, surveillance and preparedness. It is important that all the elements required to mobilise prevention systems are considered and actioned to achieve the Strategy.

Intellectual disability healthcare in Australia: Progress, challenges, and future directions

AbstractPeople with intellectual disability experience some of the greatest health disparities in Australia. Individuals are expected to access mainstream health services that are ill equipped to meet their needs. The Australian government has made recent commitments to improve the healthcare of people with intellectual disability. This article describes the Australian health system and how it responds to the needs of people with intellectual disability. It draws on examples of advances in policy, inclusion, and service development, achieved through concrete and persistent systemic advocacy, to discuss emerging evidence on the delivery of healthcare to people with intellectual disability in Australia. The article also highlights immediate priorities including increasing the uptake of health assessments, building the capacity of our health workforce, and responding to the needs of people with intellectual disability in COVID‐19 outbreaks or other natural disasters. Intellectual disability healthcare is at a dynamic point in Australia with commitment and funding from government to lead to change. It is critical that momentum in health services development is maintained to enable improved health outcomes for people with intellectual disability.

Pattern of multimorbidity in middle-aged and older-aged people with mild intellectual disability in Australia.

Non-communicable diseases (NCDs), also known as chronic diseases, now constitute a major proportion of ill-health across most adult and older populations including in people with intellectual disability. The current paper is a comparative analysis of prevalence of NCDs across mid-aged and older-aged people with mild intellectual disability. Comparative data comes from two cross-sectional surveys using similar methodology and timeframes. The analysis sample comprises mid-aged group (30-50 years, N = 291) and older-aged group (≥60 years, N = 391). People with mild intellectual disability start developing NCDs in early to mid-adulthood and increases with age. The mean number of NCDs in mid-aged group was 0.86 (SD, 0.84) compared to 3.82 in older group (SD, 2.67). There needs to be early identification and management of NCDs using relevant health promotion and preventative measures at optimal intervention points. The training of healthcare professionals needs improvement.

Building person-centred homes: a case study of a cluster-designed home for adults with intellectual disability in Australia

AbstractA case study of 20 families investigated a cluster design of new homes for 15 adults with intellectual disabilities in Australia. It explored how families created a cluster home model for adults to live in their own homes with paid support in a modern context by answering three research questions: What type of home did parents choose for their children with intellectual disabilities and why? What type of home did they achieve? How did they overcome challenges to accomplish building the home? Families adopted a participatory design approach, collaborating as learning partners to secure government funding for purchasing land and constructing their cluster design. However, it was a complex project requiring many stakeholders with conflicting interests and priorities. Specifically, families rejected the group home model preferred by government agency staff, shifted the focus from technical building rules and design standards to prioritise each adult’s needs and preferences for their home, rejected institution-like fixtures/fittings when installed and used family governance to choose key support workers directly. Ultimately, the families created security of place through tenancy in attractive homes with government funding, welcoming neighbours and chosen support workers.

Retirement and People with Intellectual Disability in the Australian Context

This paper examines retirement by older workers with intellectual disability. Much research and intervention about retirement and intellectual disability in the last decade or so emanates from Australia, although there are some current cross-sectional and descriptive studies from other developed countries. The Australian literature stands out as the forerunner in the development and controlled evaluation of interventions to support the process of preparing for, practising, and then experiencing retirement. Therefore, this paper begins by briefly describing retirement-related aspects of employment for people with intellectual disability in Australia. Next, we present a critical summary of Australian research on the retirement of people with intellectual disability, supported by a briefer analysis of international literature. Then, key issues, such as financial factors, age of retirement, the time course of retirement (sudden or gradual), and self-determination regarding the decision to retire, are explored. Finally, to help guide future research and policy, we identify a number of retirement-related research questions that are currently under-researched or unexamined.

A comparative analysis of the prevalence and predictors of chronic pain in older adults with and without intellectual disability in Australia

ABSTRACT Background There is little research comparatively assessing prevalence of pain between older people either with or without intellectual disability. This paper explores health and social factors associated with chronic pain in these two groups. Method A cross-sectional survey was undertaken in New South Wales and Queensland, Australia. Inclusion criteria were adults either with or without intellectual disability, aged 60 years and older, and currently living in community-settings. Univariate and multivariable analyses were undertaken on a sample of 391 adults with intellectual disability and 920 adults without intellectual disability. Results Key findings included higher prevalence of pain in the intellectual disability group, along with higher rates of osteoarthritis, falls, oral health problems, and mood disorders. Conclusions Mitigating risk factors for conditions that cause chronic pain in older adults is crucial. As longevity increases, the healthcare sector needs to prioritise chronic pain management for people with intellectual disabilities through appropriate treatment strategies.

Editorial: A practical SQUARE Guide on quality service for boards of disability service providers for adults with intellectual disability in Australia

Editorial: A practical SQUARE Guide on quality service for boards of disability service providers for adults with intellectual disability in Australia

Access to general practice for people with intellectual disability in Australia: a systematic scoping review

BackgroundPeople with intellectual disability experience inadequate access to general practice and poorer health outcomes than the general population. While some access barriers have been identified for this population, these studies have often used narrow definitions of access, which may not encompass the multiple dimensions that influence access to general practice. To address this gap, we conducted a scoping review to identify factors impacting access to general practice for people with intellectual disability in Australia, using a holistic framework of access conceptualised by Levesque and colleagues.MethodsThis scoping review followed Joanna Briggs Institute methodology and was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Medline (Ovid), Scopus, CINAHL, Informit and PsycINFO databases were searched. Screening, full-text review and data extraction were completed by two independent reviewers, with consensus reached at each stage of the study. Data were extracted, coded and synthesised through deductive qualitative analysis – using the five corresponding conceptual dimensions within Levesque and colleagues’ theoretical framework of access, which incorporate both supply-side features of health systems and services, and demand-side characteristics of consumers and populations.ResultsThe search identified 1364 publications. After duplicate removal, title and abstract screening and full-text review, 44 publications were included. Supply-side factors were more commonly reported than demand-side factors, with the following issues frequently identified as impacting access to general practice: limited general practitioner education about, and/or experience of, people with intellectual disability; communication difficulties; and inadequate continuity of care. Less frequently included were factors such as the health literacy levels, promotion of general practice services and availability of complete medical records.ConclusionsThis is the first scoping review to assess access barriers for people with intellectual disability using a comprehensive conceptualisation of access. The findings highlight the need for increased efforts to address demand-side dimensions of access to general practice and offer a basis for a balanced portfolio of strategies that can support recent policy initiatives to enhance access to care for people with intellectual disability.

Parental Adjustment Scale: Validation of a brief, five-item measure of parental adjustment for use with families of typically developing children and children with developmental and/or intellectual disabilities in Australia

BackgroundExplores the validity of the five-item parental adjustment scale, a subscale of the previously validated Parenting and Family Adjustment Scales. AimThe aim was to assess the factor structure and convergent validity of a measure of parental adjustment within parents of typically developing children and parents of childiren with developmental and/or intellectual disabilities. Methods and proceduresCross-sectional survey data was analysed from Australian parents of children aged 2-12 years who were typically developing children (N = 683) and had developmental and/or intellectual disabilities (N = 756). Confirmatory factor analyses and multi-group structural equation modelling examined if the factor structure performed similarly across the two populations. Convergent validity was assessed. Outcomes and resultsThe confirmatory factor analysis supported the hypothesised one-factor structure for the parental adjustment scale in both populations. Partial measurement invariance confirmed that the scale was structurally consistent within both parent groups. The convergent validity was supported by significant correlations with the DASS-21 in the disability population and the K10 in the typically developing population. Conclusions and implicationsThis brief, easily administered, five-item scale demonstrates strong potential in assessing parental adjustment, within both parents of typically developing children and parents of children with developmental and/or intellectual disabilities.

Social and community inclusion outcomes for adults with autism with and without intellectual disability in Australia.

BackgroundResearch suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability.MethodEighty‐four adults with autism (mean age 34.2 years, SD = 4.5; 67% with co‐occurring intellectual disability), recruited as children and adolescents, participated in the current study. Adult social and community inclusion outcomes were explored through interview and questionnaire, both parent/carer‐report and self‐report.ResultsParticipants predominantly lived with family or in supported accommodation, did not pursue higher education, and mostly participated in day activity programmes. Most had limited friendships as reported by parents/carers; however, self‐report data (n = 28) indicated that adults were largely satisfied with their social relationships. Overall outcome was poor for 57%, and good/very good for 34%. Adults with intellectual disability generally had poorer outcomes.ConclusionAutistic adults encountered numerous difficulties in leading an independent life. Adults with co‐occurring intellectual disability were most likely to experience difficulties; however, outcomes ranged from poor to very good for adults without intellectual disability. Discrepancies in parent/carer‐report and self‐reported experiences of friendships highlight the need to ensure individual experiences are captured in addition to parent/carer‐report. Appropriate resources and programmes are crucial for adults with autism to support them to have the choice to live independently.

Mental health service use and costs higher for patients with intellectual disabilities in Australia

Mental health service use and costs higher for patients with intellectual disabilities in Australia

Mental health of older people with mild and moderate intellectual disability in Australia.

The progressive increase in life expectancy of people with intellectual disability (ID) has resulted in enhanced survival into old age and has also seen a growth in research on both lifelong and emerging ageing-related health issues. Health issues amongst provider-supported adults have been previously studied, but these studies have not always included older community-dwelling adults with ID. A study examining the extent of mental health of 391 community-dwelling adults with ID age 60 and older in both metropolitan and rural areas of two East Coast Australian states was undertaken using a cross-sectional survey. Examined were a range of demographic (age, sex, living arrangements, employment and socio-economic status) and life (co-morbidities, adverse life events and social support) factors. Data were parsed by two age groupings (60-65: n=234 and >65: n=157). Findings revealed that older community-dwelling adults with ID have many of the same mental health disorders as do other ageing people, with the exception of significant psychiatric disorders often associated with older age. Over a third (35%: n=137) reported some one or more mental health disorders. Age, sex, location (rural or urban), financial hardship, social support or type of living arrangement were not statistically significant as risk factors for poor mental health. However, employment status was a clear predictor. Stepwise regression models showed a strong association between mental ill-health and adverse life events and between mental ill-health and multiple physical co-morbidities. The cross-sectional nature of the study limits causal inference. The cumulative effect of chronic health conditions and adverse life events cannot be prevented retrospectively. However, greater awareness amongst both health professionals and care staff that older adults with ID have a high likelihood of significant and/or repeated traumas and need better health care to limit physical co-morbidity may assist in providing support that is better tailored to individual needs in older age to reduce the burden of mental ill-health.

Attitudes and experiences of general practitioners who provided health care for people with intellectual disabilities: a South Australian perspective

While health care for people with an intellectual disability in Australia has transitioned from institutional specialisation to a mainstream primary care model, access and quality of health care in this system has been questioned. This study aimed to explore the general practitioner’s perspective in providing this level of care in the community. A qualitative study using semi-structured interviews to explore attitudes, experience, knowledge, and supports of South Australian general practitioners was conducted. Thematic analysis was used to identify key themes. Eight general practitioners were interviewed, two from rural South Australia and six in urban practice. Three key themes were identified: a fear of the unknown; complexity of patient needs; and emotional and financial burnout. To improve health outcomes for people with intellectual disabilities, general practitioners need education pertaining to the specific health needs of people with intellectual disabilities, improved collaboration between service providers and specialists; and financial recognition for providing care to patients with complex health needs. Public awareness is required to improve access and quality of care.

Societal cost of childhood intellectual disability in Australia.

There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data. Costs included healthcare service utilisation, pharmaceutical use, caregiver productivity losses and time spent providing care because of the child's disability. The sample comprised caregivers with a child with ID aged between 2 and 10years old recruited in Australia. Healthcare service utilisation and pharmaceutical use were obtained from routinely collected administrative claims data. Healthcare utilisation not captured in the routinely collected administrative data and absenteeism data were obtained from a retrospective recall-based questionnaire. Time spent providing care because of the child's disability was obtained using a time-use diary. The total cost of ID in Australia was estimated to be AUD 72027 per year per child, and the total cost of ID in childhood was estimated to be AUD 12.5 billion per year. The cost to governments of ID in childhood was estimated to be AUD 6385 per child per year, resulting in a total cost to government of AUD 1.1 billion per year. This is the first study to estimate the direct and indirect costs associated with ID in childhood. The results of this research demonstrate the considerable economic impact of ID in childhood on families, governments and broader society in terms of both direct and indirect costs. An understanding of the cost implications of any intervention are critical in assisting policymakers in planning and prioritising of health services.

‘Nothing about us without us’: sex education by and for people with intellectual disability in Australia

ABSTRACT People with an intellectual disability experience a protective regime when it comes to their sexuality. Families, carers, services and others mediate their experiences and act as gatekeepers through policies and practices that focus on the regulation and management of sexuality. Sex education has traditionally been ‘for’ people with intellectual disabilities provided ‘by’ health professionals, teachers and other professions who position themselves as experts with the power to shape the sex education, information and learning opportunities that people with an intellectual disability access. This paper presents an alternative programme developed in collaboration with people with intellectual disabilities, which uses the stories of people with an intellectual disability and is facilitated by people with intellectual disabilities as peer educators. Crip theory rejects approaches to understanding the disability experience that privilege particular characteristics of disability experience over others including cognition. This paper argues this idea can offer a ‘way in’ for people with intellectual disabilities to research, debate and progress sexual rights within the current sexual rights vacuum in international law and policy. The paper demonstrates how an Australian peer education programme provides a liberating sex education for those involved through a focus on rights and use of peer education.

Barriers to finding and maintaining open employment for people with intellectual disability in Australia

AbstractEveryone has the right to employment. Work is important for health, well‐being, and social, economic, and financial inclusion. However, it is often difficult for people with intellectual disability to find and maintain work, especially in the open labour market. Policy challenges remain about who can access open employment (also sometimes called competitive or supported employment) and how often people with intellectual disability do so. Greater understanding about the barriers that people with intellectual disability encounter when they try to find and keep work in open employment is needed.Drawing on research with 51 people with intellectual disability in Australia, this paper examines the systemic barriers they report to finding and maintaining work in open employment. The findings highlight that the barriers they experience stem from narrow, dismissive, and discouraging attitudes to their work in open employment and from a spectrum of experiences of stigma and discrimination in open workplaces. The paper thus provides new knowledge about reasons that people with intellectual disability may either reject or not continue in open employment and take up less inclusive work options. The paper discusses the implications of the findings, including the need for policy development for attitudinal change, designing more varied roles for employees with intellectual disability, ensuring access to industrial relations protections, and increasing and better regulating and funding requirements on support to people with intellectual disability who are seeking work in open employment.

“Time's Up”: The Experience of Entering Residential Aged Care for Young People with Acquired Neurological Disorders and Their Families

Background and aims: Previous research has highlighted that living in residential aged care (RAC) is associated with a range of negative outcomes for adults with acquired neurological disorders. This study sought to understand the lived experience of entering RAC for young people and their family members and characterise their needs during this process.Method: Data included 64 written and verbal submissions to the 2015 Senate Inquiry into the Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia. In line with hermeneutic tradition, text was analysed using thematic analysis.Results: Entry to RAC was experienced as a complex process that coalesced around three key events: an unexpected health crisis, a directive that time's up and the individual is required to leave the healthcare setting, with a subsequent decision to move into RAC. This decision was made in the absence of time, knowledge of options or adequate support.Conclusions: Findings suggest that there are both immediate practice changes and longer term policy responses that can support the health and disability systems to uphold the rights of people with acquired disability to choose where and how they will live their lives.

Let’s talk about sex: How people with intellectual disability in Australia engage with online social media and intimate relationships

People with intellectual disability often experience repression and control of their sexuality as they have historically been perceived as being childlike and asexual by members of society. Such acts can be seen to contravene their Human Rights under The Convention on the Rights of Person with Disabilities (CRPD), which endorses the rights of people with intellectual disability to fully express their sexuality.The purpose of this study was to explore if people with intellectual disability access internet based social media, and if so, if they use it to form relationships that express their sexuality. Using an interpretative phenomenological approach, semi-structured interviews were conducted with 30 adults with an intellectual disability (22 males, 8 females), aged between 20 to 66 years. Participants were purposely sampled though disability #organisations.Three themes emerged from the data: creating new friendships, maintaining existing friendships, exploring and expressing sexuality. People with intellectual disability used a variety of personal electronic devices to access internet based social media to be socially and sexually active. Facebook was accessed to make contact with existing platonic friends, peers and interest groups to meet socially. Sexually explicit material was viewed using the internet, either as an individual activity or by couples in monogamous relationships. This study adds to the paucity of research examining the use of internet based social media by people with intellectual disability for sexual expression. This research revealed the people with intellectual disability exercised cyber safe practices without any explicit formal education and conducted themselves in a respectful manner. Few participants acted in a manner that appeared to put them at risk of exploitation.