Active Support Measure: a multilevel exploratory factor analysis.

BACKGROUND: Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM. METHODS: Multilevel exploratory factor analysis was conducted on ASM data (n = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services. RESULTS: Multilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person. CONCLUSIONS: The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support.

A scoping review of early childhood support for Aboriginal and Torres Strait Islander children living with a disability in regional, rural and remote settings.

INTRODUCTION: Many experts and communities have concerns about how National Disability Insurance Scheme services are provided to Aboriginal and Torres Strait children. This study was undertaken at the request of the NPY Women's Council in partnership with the researchers, to explore supports for Aboriginal and Torres Strait Islander children living with a disability in their remote areas. OBJECTIVE: This scoping review aims to (a) explore the barriers and enablers to accessing disability support services for families of young Aboriginal and Torres Strait Islander children (0-8 years) living in regional, rural and remote settings, and (b) summarise best practice approaches for accessing support for young children in these settings. DESIGN: The search was run in three electronic databases, as well as grey literature sources. We assessed the quality of included publications using the Centre of Research Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange tool. A narrative synthesis was supported by thematic analysis. FINDINGS: From an initial search (557 citations), we identified 13 eligible documents. Most documents were peer-reviewed articles of qualitative studies. Key themes identified included the following: (1) Holistic approach, (2) Understanding disability, (3) Consistent relationships, (4), Flexibility, (5) Simplify system and (6) Enhance communication. DISCUSSION/CONCLUSION: This scoping review has revealed gaps in the provision of quality, culturally responsive disability services for families of Aboriginal and Torres Strait Islander children living in regional, rural and remote areas of Australia. A family-centred, flexible approach will help address their needs. Future research is required to design and evaluate models of care for Aboriginal and Torres Strait Islander children.

Social inclusion of LGBTQ and gender diverse adults with intellectual disability in disability services: A systematic review of the literature.

BACKGROUND: Lesbian, gay, bisexual, transgender, queer (LGBTQ) and gender diverse adults with intellectual disability experience exclusion within disability services. OBJECTIVE: This review explores the experiences of social inclusion/exclusion of this cohort in the context of disability services. SEARCH METHOD: A systematic search was conducted of peer-reviewed research published between January 2014 and April 2019. Five databases returned 66 articles plus three from hand searches. APPRAISAL AND SYNTHESIS: Nine articles were included in this review. The Critical Appraisal Skills Programme tool was used to assess the quality of the research. NVivo 12 was used as a tool to organise the articles. RESULTS: Marginalisation of LGBTQ adults with intellectual disability in western societies is mirrored in disability organisations. There remains a dearth of research into experiences of transgender people with intellectual disability who use disability services. CONCLUSIONS: Research into interventions that support the inclusion of this cohort in disability support services is needed.

Women's experiences of accessing individualized disability supports: gender inequality and Australia's National Disability Insurance Scheme.

BACKGROUND: Care services in industrialized nations are increasingly moving towards individualized funding models, which aim to increase individuals' flexibility, choice and control over their services and supports. Recent research suggests that such schemes have the potential to exacerbate inequalities, however none has explored gendered dimensions of inequality. The Australian National Disability Insurance Scheme (NDIS) is a major individualized funding reform, and has a female participation rate of only 37%, despite women and girls making up half of the disability population. METHODS: The objective of the study is to explore possible gendered barriers to applying for and receiving adequate support through the NDIS, and to suggest directions for future research. We report on semi-structured interviews with 30 women with disability and explore their experiences with the NDIS and their perspectives on challenges associated with being a woman seeking disability support in Australia. We analyse the results using thematic analysis. RESULTS: Most women in our sample reported differences between the experiences of men and women seeking disability support in Australia. Commonly reported gendered barriers to women being able to access the right supports for their disability involve a) confidence, negotiation and self-advocacy, b) gendered discrimination in diagnosis and the medical system, which has implications for disability support access, and c) support for and recognition of caring roles. CONCLUSIONS: These results suggest that women are not receiving equitable treatment with regard to the NDIS, and that further research and policy reform are needed to ensure that women with disability are not further disadvantaged as a result of the move toward individualized funding models.

Planning for the future of a pediatric kidney transplant recipient with special needs: A parent's perspective.

I was asked to write this article to share with medical professionals, my view as a parent with a child who has special needs and needs a transplant. It is a detailed story from a parent's point of view on what it is like to have a child with special needs with serious medical complications and how I went about finding and managing my daughter's care. I summarize my own personal experiences based on my years of planning for my daughter.

Co-designing a methodology for workforce development during the personalisation of allied health service funding for people with disability in Australia.

BACKGROUND: Internationally, health and social services are undergoing creative and extensive redesign to meet population demands with rationed budgets. This has critical implications for the health workforces that serve such populations. Within the workforce literature, few approaches are described that enable workforce development for health professions in the service contexts that emerge from large scale service redesign in times of industry shift. We contribute an innovative and robust methodology for workforce development that was co-designed by stakeholders in allied health during the personalisation of disability funding in Australia (the introduction of the National Disability Insurance Scheme). METHODS: In the context of a broad action research project, we used program logic modelling to identify and enact opportunities for sustainable allied health education and workforce integration amidst the changed service provision context. We engaged with 49 industry stakeholders across 92 research engagements that included interviews (n = 43), a workshop explicitly for model development (n = 8) and a Project Advisory Group (n = 15). Data from these activities were inductively coded, analysed, and triangulated against each other. During the program logic modelling workshop, we worked with involved stakeholders to develop a conceptual model which could be used to guide trial and evaluation of allied health education which was fit-for-purpose to emerging workforce requirements. RESULTS: Stakeholder interviews showed that drivers of workforce design during industry shift were that (1) service provision was happening in turbulent times; (2) new concerns around skills and professional engagement were unfolding for AHP in the NDIS; and (3) impacts to AHP education were being experienced. The conceptual model we co-designed directly accounted for these contextual features by highlighting five underpinning principles that should inform methodologies for workforce development and AHP education in the transforming landscape: being (1) pedagogically sound; (2) person- or family-centred; (3) NDIS compliant; (4) informed by evidence and (5) having quality for all. We use a case study to illustrate how the co-designed conceptual model stimulated agility and flexibility in workforce and service redesign. CONCLUSIONS: Proactive and situated education of the emerging workforce during policy shift is essential to realise future health workforces that can appropriately and effectively service populations under a variety of changing service and funding structures - as well as their transitions. We argue that collaborative program logic modelling in partnership with key stakeholders including existing workforce can be useful for broad purposes of workforce (re)design in diverse contexts.

Exploring the Experiences of University Students with a History of Cancer: A Pilot Study.

This exploratory pilot study aims to provide preliminary data describing the experiences of university student cancer survivors, quantify their connection to the campus Disability Resource Center, and assess the feasibility of conducting research with this population. In this descriptive study of cancer survivor students at one large university in the southwestern U.S., online survey respondents with a history of cancer (N = 19) reported cognitive, emotional, and physical limitations that affected their educational experience. The majority (78.9%) of our participants were children, adolescents, or young adults (up to age 39) when diagnosed with cancer; all others were diagnosed between 40 and 60 years old. We found that students living with cancer have short- and long-term impairments, including memory issues that made academic performance difficult. These effects led some students to cope individually while others sought support from institutional entities or instructors. Here we document survivor experiences and propose next steps in research, which includes an intervention that builds on our preliminary findings and uses the positive deviance model.

"Loss of Dignity" in Claims for Damages for "Humiliation, Loss of Dignity and Injury to Feelings" in the Human Rights Review Tribunal of New Zealand.

The Human Rights Review Tribunal of New Zealand recently determined that it has the power to award damages for loss of dignity in cases where the person whose rights have been breached does not have the mental capacity to understand that this is the case, or the impact of that breach on their dignity. In defining the meaning of dignity, determining how to assess its loss (by way of an objective rather than subjective test) and categorising the nature of damages for loss of dignity as vindicatory rather than compensatory, the Tribunal broke new ground. However, after analysing the Tribunal's decision, and considering relevant case law, this article concludes that the Tribunal's decision was flawed, and that the legislation only allows for the award of compensatory damages. Legislative change would be required to expand the scope of remedies available to include vindicatory damages.

Predicting aggression in adults with intellectual disability: A pilot study of the predictive efficacy of the Current Risk of Violence and the Short Dynamic Risk Scale.

BACKGROUND: Structured assessments have been shown to assist professionals to evaluate the risk of aggression in secure services for general offender populations and more recently among adults with intellectual disabilities. There is a need to develop intellectual disability sensitive measures for predicting risk of aggression in community samples, especially tools with a focus on dynamic variables. METHODS: The study prospectively followed 28 participants for up to 2 months to test whether the Current Risk of Violence (CuRV) and Short Dynamic Risk Scale (SDRS) were able to predict verbal and physical aggression in a community sample of adults with intellectual disability. RESULTS: CuRV and SDRS ratings significantly predicted verbal and physical aggression over a 2-month period. CONCLUSIONS: The current study supports the use of the CuRV with adults with intellectual disability living in community settings. The CuRV and SDRS are worthy of future development and evaluation in independent investigations.

Choosing the harder road: Naming the challenges for families in person-centred planning.

Person-centred planning (PCP) has underpinned disability service provision in many Western countries for the past 30 years. For many people with an intellectual disability, family members are central to this process and are important allies in facilitating positive change. This article presents findings from an evaluation of a family resourcing and capacity building project in New South Wales (NSW), Australia. Accounts from families show the merits of such work, but family efforts can be undermined by apathy and discrimination to disability from extended family, community and service providers. Asking families to be the primary support in PCP initiatives may potentially ignore the impacts of structural and psycho-emotional disablism on all family members. For families to support people with intellectual disability in PCP, there is a need to acknowledge and respond to the material, cultural and personal challenges for all family members in planning processes.

Can a Unified Service Delivery Philosophy Be Identified in Aging and Disability Organizations? Exploring Competing Service Delivery Models Through the Voices of the Workforce in These Organizations.

Services for older adults and younger people with disabilities are increasingly merging, as reflected in the creation of Aging and Disability Resource Centers (ADRCs). Using ADRCs to coordinate services is challenging, primarily because these fields have different service delivery philosophies. Independent Living Centers, which serve people with disabilities, have a philosophy that emphasizes consumer control and peer mentoring. However, the aging service delivery philosophy is based in a case management or medical model in which the role of consumers directing their services is less pronounced. Using institutional logics theory and a qualitative research design, this study explored whether a unified service delivery philosophy for ADRCs was emerging. Based on focus groups and questionnaires with staff from ADRCs, findings revealed that competing service delivery models continue to operate in the aging and disability fields.

Community managed services for persons with intellectual disability: Andhra Pradesh experience.

In resource poor settings innovative and bottom-up approaches are required to provide services to people with with disabilities. In this context, the present paper explains a community-based model of manpower development and coordination of services for people with intellectual disabilities in unified state of Andhra Pradesh in India. Women with disabilities from the village were identified, and those willing to be trained to work as community resource persons (CRPs) were selected and given hands-on training in a phased manner. A total of 130 women were trained in five groups of 25-30 per group and were deployed in the community to screen, identify and refer children with intellectual disabilities. The training content included basic stimulation and interface with functionaries of other government departments of health, education and welfare to ensure comprehensive service delivery. Neighbourhood centres (NHCs) were established where the CRPs could meet with families collectively. The results indicated that the CRPs were welcomed by the families. The NHCs established primarily as recreation centres, promoted inclusion and functioned as information dissemination centre. The services provided by the CRPs were owned and monitored by the Women's self-help group and the disability groups thus ensuring sustainability of the model.

Ambulatory mental health data demonstrates the high needs of people with an intellectual disability: results from the New South Wales intellectual disability and mental health data linkage project.

OBJECTIVE: To investigate the ambulatory mental health service profile of persons with intellectual disability (ID) in a representative sample of New South Wales (NSW). METHODS: A statistical linkage key was used to link the Disability Services Minimum Data Set (DS-MDS) and a community mental health services dataset (MH-COM) for a representative area of NSW for the period 2005-2010. Linkage was undertaken in four NSW local health districts (LHDs), covering 36.7% of the NSW population. The mental health profiles and service use characteristics of people with an ID were compared to mental health service users without an ID. RESULTS: Of the 89,262 people in the MH-COM over this 6-year period, 1,459 people (1.6 %) were identified as having an ID. Compared to those without an ID, people with an ID were more likely to have psychotic disorders, developmental disorders and personality disorders, and more than twice as likely to have an 'unknown' diagnosis. Compared to those without an ID, people with an ID were less likely to have depressive disorders, adjustment disorders and other disorders. Service use profiles revealed that people with an ID had 1.6 times more face-to-face contacts, and a total face-to-face contact time which was 2.5 times longer than people without an ID. CONCLUSIONS: Ambulatory mental health data from NSW indicates that people with an ID receive care for a distinct range of mental disorders, and experience uncertainty regarding their diagnosis. People with an ID have higher service needs which require recognition and the allocation of specific resources. Such data provide a suitable baseline for future evaluation of the impact of ambulatory mental health reforms for people with an ID.

"The system allows for it to happen": the experiences of human service workers in engaging with Aboriginal participants of the National Disability Insurance Scheme.

PURPOSE: The purpose of this study was to explore the experiences of human service workers (HSWs) in engaging with Aboriginal participants of the National Disability Insurance Scheme (NDIS). METHODS: Semi-structured interviews were undertaken with HSWs engaging with Aboriginal participants of the NDIS on Kaurna Country (Adelaide, South Australia). Data were analyzed using thematic analysis. RESULTS: In total, n = 10 HSWs participated in the study. Three themes impacting upon HSWs ability to effectively engage with Aboriginal participants were identified: (1) lack of access to training, support and supervision, (2) difficulties in navigating assessment and intervention, and (3) limited availability of culturally specific services. CONCLUSIONS: This study contributes to Australian disability policy and practice with insights gained from the experiences of human service workers engaging with aboriginal participants of the NDIS. Systemic changes are required within policy and funding arrangements to create a system flexible enough to respond to the needs of Aboriginal Peoples with disability.

Aboriginal peoples with disability are underrepresented within the National Disability Insurance SchemeConcerns exist over the adequacy of the knowledge and skills of the disability workforce associated with the National Disability Insurance SchemeThis study highlights three key barriers human service workers face in effectively engaging with Aboriginal participants of the National Disability Insurance SchemeThese barriers reflect both organizational and policy constraints and highlight the need for systemic changes to the way disability services are delivered to Aboriginal Peoples.

Offending by people with intellectual disabilities in community settings: a preliminary examination of contextual factors.

BACKGROUND: While several validated measures of the life circumstances of people with intellectual disabilities (ID) have been developed, this stream of research has not yet been well integrated with environmentally oriented criminological theory to explain offending among people with ID. In this study, we attempt to provide a preliminary integration through an investigation of the relationship between contemporary life experiences, well-being, choice and offending among people with ID, exploring the relevance of two classic criminological theories (theories of strain and social control). MATERIALS AND METHODS: Questionnaire measures were used to compare a range of 'ordinary' life experiences [the 'Life Experiences Checklist' (LEC)], subjective well-being (the 'Personal Well-being Index - ID') and the extent of choice (the 'Choice Questionnaire'), between offenders (N = 27) and non-offenders (N = 19) with ID recruited through integrated (NHS and Local Authority) multi-disciplinary teams (community teams for adults with learning disabilities). RESULTS: Using regression analyses to explore the strength of associations with offending, it was found that an indicator of impoverished personal relationships, from the LEC provided the best predictor of offending. This finding appears to favour criminological explanations based on social control. CONCLUSIONS: Existing measures of life circumstances can be used to explore environmentally oriented criminological theories, bringing benefits to our understanding and treatment of offenders with ID living in community settings.

A case study approach to understanding the pathway to individualised funded supports under the National Disability Insurance Scheme for community-dwelling individuals with acquired brain injury.

BACKGROUND: The National Disability Insurance Scheme (NDIS) offers opportunity against a historical background of underfunded and fragmented services for people with disability. For people with acquired brain injury (ABI), concerns have been raised about how they access NDIS individualised funded supports. The aim of this research was to explore how community-dwelling individuals with ABI in Queensland navigate the NDIS participant pathway to individualised funded supports. METHODS: This study used a multiple case study design within a policy implementation framework. Twelve people with ABI, nine family members and eight NDIS funded and mainstream service providers participated. Data was collected from relevant NDIS documentation, health records and semi-structured interviews with individuals with ABI, family members, and service providers. RESULTS: The current study highlighted the complexity of navigating the NDIS participant pathway of access, planning, implementation and review for people with ABI, their family and service providers. The NDIS pathway was impacted by the insurance and market based NDIS model itself, time, communication, and the requirement for external supports. Equally, the process was affected by environmental factors, individual person and injury factors as well as service providers, with a range of outcomes evident at the individual, family and system level. CONCLUSIONS: Findings suggest that the NDIS has struggled to make specific allowance for people with ABI and the complexity of their disabilities. Providing people with ABI access to the NDIS Complex Support Needs Pathway may redress many of the difficulties people with ABI experience accessing and using NDIS funded supports.

Assessing Alignment Between Intellectual and Developmental Disability Service Providers and Trauma-Informed Care: An Exploratory Study.

People with intellectual and developmental disabilities (IDD) are disproportionately impacted by potentially traumatic experiences; however, organizations serving this population have lagged in their integration of trauma-informed care (TIC). Trauma-informed care is a systemwide response to the pervasiveness of trauma that frequently requires an organizational shift rooted in staff training. Using an online statewide survey, the present study examined beliefs and training among IDD service providers. Responses from 288 service providers suggested some alignment among beliefs and staff training content with TIC principles. Although the findings indicate a foundation for TIC, intentional efforts are needed for IDD agencies to fully embrace TIC.

Negotiating boundaries: reflections on the ethics of arts-based and artistic research in care contexts.

BACKGROUND: Arts-based practice and research in care has increased significantly. There is a need to examine the ethical issues arising from this complex phenomenon, conceptualised as boundary work. METHOD: To support interdisciplinary understanding in artistic and arts-based work, we collaboratively explored three arts-based research projects implemented in diverse care and healthcare contexts. The ethical issues related to boundary work were negotiated through reciprocal, in-depth reflection. RESULTS: Arts-based and artistic research allows embodied, sensitive, and sensible encounters to emerge, in which the boundaries between artistic agency, professional positions, and even notions of evidence may be challenged. The notion of vulnerability emerges as a central ethical feature of boundary work. CONCLUSIONS: Articulating ethical concerns in artistic-pedagogic boundary work and research can promote a more nuanced understanding of power relations in cross-sectoral practices. It may help develop services that support the agency and holistic well-being of individuals and communities.

Socio-Spatial Disparities in County-Level Availability of Aging and Disability Services Organizations.

Aging and disability services are essential for supporting older adults in living independently in their homes and communities as they age. Applying theoretical perspectives of community gerontology and spatial inequality, we use county-level data (N=3142) from the National Neighborhood Data Archive (NaNDA) and the American Community Survey to explore if and how availability of aging and disability services organizations varies across the rural-urban continuum and across compositional characteristics of counties. Results show that rural counties are significantly more likely to be aging and disability services deserts. Stratified models show that poverty rates and relative shares of non-Hispanic Blacks are positively associated with greater odds of aging and disability services deserts across rural and urban counties, but divergent findings appear for county-level shares of Hispanics. These findings are discussed as well as implications for research, policy, and practice on equitable access to aging and disability services.

Quality assessment, inclusive community development, and collective learning: An institutional perspective from Germany.

This article reviews the German discourse on quality of life, quality assurance, and outcome measurement in services for persons with intellectual disabilities. Following institutional assumptions of path dependencies in organizational development, it is argued that concepts such as quality assurance must be understood in the context of the national support system development. For the Federal Republic of Germany, it can be noted that previous approaches to quality assurance of services based on measurement and evaluation tools have not been the drivers of innovation for inclusion. The driving forces behind reforms in the field of disability originated from the three angles of the social service structure (people with disabilities, statutory welfare agencies, and service providers). Policies of key actors were not part of a consistent reform strategy. However, the main elements of the inclusive philosophies of the disability rights movement became hegemonial and led to national legislation that prioritizes person-centered support arrangements in inclusive settings. With regard to governance arrangements in Germany and the idiosyncrasies of local disability fields, it is suggested that there should be a conceptualization of quality assurance in a multilevel approach as "local quality dialogues for collective learning."