Australia’s Disability Employment Services Program: Participant Perspectives on Factors Influencing Access to Work

Disability employment programs play a key role in supporting people with disability to overcome barriers to finding and maintaining work. Despite significant investment, ongoing reforms to Australia’s Disability Employment Services (DES) are yet to lead to improved outcomes. This paper presents findings from the Improving Disability Employment Study (IDES): a two-wave survey of 197 DES participants that aims to understand their perspectives on factors that influence access to paid work. Analysis of employment status by type of barrier indicates many respondents experience multiple barriers across vocational (lack of qualifications), non-vocational (inaccessible transport) and structural (limited availability of jobs, insufficient resourcing) domains. The odds of gaining work decreased as the number of barriers across all domains increased with each unit of barrier reported (OR 1.22, 95% CI 1.07, 1.38). Unemployed respondents wanted more support from employment programs to navigate the welfare system and suggest suitable work, whereas employed respondents wanted support to maintain work, indicating the need to better tailor service provision according to the needs of job-seekers. Combined with our findings from the participant perspective, improving understanding of these relationships through in-depth analysis and reporting of DES program data would provide better evidence to support current DES reform and improve models of service delivery.

Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery

Background Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD. In the context of the COVID-19 pandemic, this service model shifted to telemedicine-only service delivery, resulting in an opportunity to analyze intervention outcomes from services delivered either via traditional in-person visits, telemedicine-only sessions, or a hybrid model including both in-person and telemedicine sessions. Methods Data are presented for 115 families with toddlers 16-33 months of age who participated in a six-session behavioral intervention and support service model either in-person, through telemedicine, or through a hybrid service model. This intervention was available for families referred for ASD evaluation through the state Part C early intervention program. Intervention feasibility, fidelity of implementation, child outcomes, and stakeholder satisfaction are compared across service delivery models. Results Caregivers, behavioral consultants, and Part C early intervention providers reported satisfaction with services, regardless of service delivery model. Caregivers and consultants also reported positive child outcomes. Statistically significant differences emerged for caregiver- and consultant-reported child outcomes in some domains, with stakeholders in the telemedicine-only group reporting slightly less improvement, compared to stakeholders in the in-person-only group. Caregivers and consultants in the telemedicine-only group also provided qualitative feedback on benefits and challenges related to telemedicine services. Conclusions Both caregivers and behavioral consultants reported positive outcomes following a brief behavioral intervention and support model targeted at families of young children with concern for ASD. Stakeholders reported improvement in child behavior and satisfaction with services across in-person, telemedicine-only, and hybrid models of service delivery. These results suggest that telemedicine presents a promising opportunity for increasing service access. Additional research is needed to continue optimizing the experience of telemedicine-based service delivery for both families and intervention providers.

Expanding digital academic library and archive services at the University of Calgary in response to the COVID-19 pandemic

Despite the uncertain challenges facing libraries of all types during the COVID-19 pandemic, new best practices and innovative ways of approaching services have emerged. Including the groundbreaking Taylor Family Digital Library in 2011, the University of Calgary Libraries and Cultural Resources has been contributing towards the ongoing development of the digital academic library. The COVID-19 pandemic has necessitated a rapid leveraging of digital skills, platforms, expertise, and models of service delivery to continue providing exceptional and transformative experiences for the University of Calgary community. The initiatives discussed in this article include online work teams, virtual 360-degree tours, the online library chat service, digital collections agreements, and remote services for archives and special collections.

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers’ roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

Paternalism to Trusteeship: Limitations of Autonomy Caring for Persons With Intellectual Disabilities

Individuals with intellectual and developmental disabilities have overcome the abuses of the past but continue to be challenged by discrimination and stigmatization. This article highlighted and reconciled the tension to care for individuals with intellectual and developmental disabilities. Autonomy, facilitated by relationship with trusted advocates, can move individuals forward and replace age-old precepts of paternalism as individuals with intellectual and developmental disabilities exert their citizenship. Nurses and other healthcare providers can create new models of service delivery focused on caring, in relationship with individuals with intellectual and developmental disabilities, continuing the evolution of care and culture change needed for belonging.

Models of service delivery for optimizing a patient’s first six months on antiretroviral therapy for HIV: an applied research agenda

Differentiated models of service delivery (DSD models) for HIV treatment in sub-Saharan Africa were conceived as a way to manage rapidly expanding populations of experienced patients who are clinically “stable” on antiretroviral therapy (ART). Entry requirements for most models include at least six months on treatment and a suppressed viral load. These models thus systematically exclude newly-initiated patients, who instead experience the conventional model of care, which requires frequent, multiple clinic visits that impose costs on both providers and patients. In this open letter, we argue that the conventional model of care for the first six months on ART is no longer adequate. The highest rates of treatment discontinuation are in the first six-month period after treatment initiation. Newly initiating patients are generally healthier than in the past, with higher CD4 counts, and antiretroviral medications are better tolerated, with fewer side effects and substitutions, making extra clinic visits unnecessary. Improvements in the treatment initiation process, such as same-day initiation, have not been followed by innovations in the early treatment period. Finally, the advent of COVID-19 has made it riskier to require multiple clinic visits. Research to develop differentiated models of care for the first six-month period is needed. Priorities include estimating the minimum number and type of provider interactions and ART education needed, optimizing the timing of a patient’s first viral load test, determining when lay providers can replace clinicians, ensuring that patients have sufficient but not burdensome access to support, and identifying ways to establish a habit of lifelong adherence.

Chronic Illness

This chapter sets out the connection between disability and human rights, examining how persons with disabilities (including those with physical disabilities, sensory disabilities, psychosocial or mental health disabilities, and intellectual disabilities) are particularly vulnerable to exclusion and discrimination, leading to human rights violations across the world. It has been a long global struggle to recognize the rights of people with disabilities and realize the highest attainable standard of physical, mental, and social well-being, a struggle evolving across countries and culminating in the 2006 adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The provisions of the CRPD relate to three specific rights that are of particular importance to people with disabilities: legal capacity, the right to health, and the right to independent living. Yet, national implementation challenges remain, including finding space for mental health and disability in policymaking and developing models of service delivery that advance human rights.