School of Social and Political Sciences - Research Publications
Permanent URI for this collection
Search Results
1 - 10 of 22
-
ItemSelf-managed Home Aged Care Support: Research Report(University of Melbourne, 2024)The study investigated the benefits and risks to: i) older people who self-manage their home care package; ii) their support workers; and iii) ways to mitigate these risks. The findings highlighted how older people can successfully self-manage their aged Home Care Package and how risks can be managed. While self-management is not wanted by everyone, those who chose to self-manage reported benefits. These included having more choice and control over their support, especially being able to select support workers. Interviewees felt much safer selecting support workers who matched their needs and interests compared to having unknown rostered agency staff come to their home. Contracted support workers often worked for one consumer for years. Modern technology was an asset that facilitated self-management. Technology assisted with recruiting support workers, scheduling work, managing accounts and payments, and enabling providers to monitor spending and be alerted to any unusual payments or fraud. Self-management occurred within a complex service system where there was inadequate funding for community services and Home Care Packages as well as workforce shortages. These challenges impacted on older people in the study who self-managed and their family representatives. While workforce shortages were a major concern across the sector, most interviewees used informal networks and online recruitment services to find satisfactory workers. However, recruitment was a challenge for some interviewees from time to time. Self-management required consumers and their family representatives to navigate complex family dynamics and manage support workers and other services. Some consumers had the confidence and skills to competently manage these situations after a lifetime of relevant experiences. Others were beginning to develop skills and sometimes felt challenged. Everyone needed access to information and advice from time to time, particularly those developing new skills. Interviewees discussed the need to balance consumer’s protection and care with their right to ‘dignity of risk’, to build their capacity, and to choose their lifestyle. Multiple risks were identified with all aged care services, including self-management. Older people can be vulnerable to perpetrators of abuse from within and outside their families. Their rights can also be overridden subtly by others with well-meaning intent. These include service providers who want to minimise risks, surveillance and tracking technologies that are not transparent, and by families wanting to protect. Strategies to mitigate risks need to be individually tailored, with diverse and individual safeguarding strategies developed. Restrictive strategies should only be imposed when proven necessary and expressly stated with necessary consents provided, if necessary, through appropriate Guardianship mechanisms.
-
ItemThe ontology and epistemology shaping our understanding of inclusion: A critical review of the research literature on disability and inclusion(Wiley, 2023-06-29)People with disability continue to face barriers to substantive and meaningfulinclusion in accommodation and community settings. The aim of this system-atic review was to examine the characteristics of the literature on‘inclusion’,‘integration’,‘exclusion’, and‘segregation’for people with disability inaccommodation and community settings. This literature is important becauseit provides the evidence base that informs policy and practice. We identified457 articles that primarily related to the experiences of people with intellectualdisability and psycho-social disability.We found: (1) the volume of publicationsrelating to the‘inclusion’,‘integration’,‘exclusion’and‘segregation’of peoplewith disability in accommodation and community living settings has increasedeach year since 2006; (2) high-income western countries were overrepresented inresearch outputs; (3) most research has been undertaken in the health sciences;(4) only 30% of literature directly engaged with people with disability; (5) lessthan 50% of the publications we reviewed (223 out of 457 manuscripts) identifiedinclusion, integration, exclusion andsegregation as their primary focus; (6)‘inclu-sion’,‘integration’,‘exclusion’and‘segregation’were predominantly used in thecontext of specific populations—psycho-social disability and intellectual disabil-ity; (7) there is great variation in the attention paid to the experiences of differentcommunities of people with disability; and (8) the notable absence of currentscholarly literature on the experiences and outcomes of people with disability liv-ing at home with parents and/or siblings. Each of these findings have importantimplications for the research agenda, policy, and practice
-
ItemMapping the parent experience of echolalia in autism spectrum disorder onto a conceptual taxonomy(TAYLOR & FRANCIS LTD, 2023-09-20)PURPOSE: Echolalia, the repetition of previously heard speech, is prevalent in a variety of neurologic and psychiatric disorders. Within the context of echolalia in autism spectrum disorder (ASD), research and intervention historically assume a clinical standpoint with two opposing paradigms: behaviourism and developmentalism. The literature is largely silent on how those other than researchers and clinicians understand echolalia. This study examined how parents experience echolalia through their children with ASD. The aim of the study was to ascertain if the parental perception of echolalia in ASD aligns with, or offers alternative perspectives to, current clinically-orientated views. METHOD: We employed online semi-structured interviews to document the experiences of 126 parents, reflecting on their children with ASD aged 3 to 34 years of age, to determine if the parent experience could be mapped onto existing clinical frameworks, or if they might offer new perspectives. We used hermeneutic phenomenological data analysis in an abductive framework. RESULT: Echolalia has predominantly been represented in literature through the perspectives of behaviourism or developmentalism. We found however, that echolalia is a phenomenon that is experienced by parents in a variety of different ways to that of the current clinically-orientated understandings. Such new ways of understanding echolalia that emerged from our analysis include one understanding which is dependent upon how echolalia is heard, and one in which parents are "waiting for echolalia to evolve." CONCLUSION: The traditional dichotomous clinical positions do not resonate with all parents, and reliance on these traditional perspectives alone may impact effective engagement with parents and the success of interventions and support strategies. Our findings have implications for future research, the education of clinicians and educators, and the design of support and intervention for those who have echolalia.
-
ItemEcholalia as defined by parent communication partners(SAGE PUBLICATIONS INC, 2023)BACKGROUNDS AND AIMS: Echolalia, the repetition of previous speech, is highly prevalent in Autism. Research into echolalia has historically assumed a clinical standpoint, with two opposing paradigms, behaviourism and developmentalism, offering differing support and intervention programs. These paradigms offer a multitude of clinical operationalised definitions; despite attempts, there continue to be challenges regarding how echolalia is to be defined. Stepping out of the dichotomous clinically orientated literature, we examined how parents summarise and formalise their understanding of echolalia as a communication partner. The objectives of this study were three-fold: (1) to investigate how echolalia is described and defined by parents; (2) to examine if existing clinical definitions align with those of parents; and (3) to begin to consider the implications of such findings for a collaborative approach between clinical perspectives and the parent experience. We bring to the fore the voices of parents, who have historically remained absent from echolalia literature. That is to say, we step outside of the clinical realm and listen to parents: something which has been previously unconsidered but represents a new vital addition to the echolalia literature. METHODS: We employed a Grounded Theory approach to document the definitions of 133 parents. RESULTS: We found that parents reported a multiplicity of important elements that are key to their understanding of echolalia. CONCLUSIONS AND IMPLICATIONS: Additionally, we found that clinical definitions do not resonate within the parent experience; parents experience echolalia in a different way to that of clinicians and parents can offer insight into our understanding of the phenomena. Our findings show that while some parents might align themselves with either a behavioural or developmental positionality, sometimes there is an overlap depending upon the context in which their child repeats and some parents advance interpretations that are not readily aligned with either of the traditional clinical schools of thought. We present implications for both clinicians and parents in ways that point towards a collaborative approach to support the person with echolalia.
-
ItemDeveloping a Career Access Program (CAP) for people with intellectual disability in the Victorian public sector: The evidence base to inform the development and implementation of CAP(Department of Health and Human Services and The University of Melbourne, 2019)
-
ItemLet me tell you, I see echolalia as being a part of my son's identity': Exploring echolalia as an expression of neurodiversity from a parental perspective(SAGE PUBLICATIONS LTD, 2024-05)Echolalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children's echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don't want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child's echolalia to be modified, to be able to exist side-by-side.
-
ItemRepeating purposefully: Empowering educators with functional communication models of echolalia in Autism(SAGE PUBLICATIONS INC, 2022-04)BACKGROUND AND AIMS: Echolalia, the repetition of speech, is highly prevalent in school aged children with Autism. Prior research has found that individuals with echolalia use their repetitions to engage in communicatively functional speech, in the absence of self-generated speech. Educators are the natural audience for a wide vary of echoed utterances across environments and in differing contexts. The objectives of this paper were three-fold: (1) to systematically investigate how researchers identify and ascribe communicative function to echoed utterances; (2) to gather and evaluate the evidence that might assist teachers to identify and better understand echoed utterances as being communicatively purposeful; and (3) to provide teachers with evidence-informed response strategies they can use to assist their students on their journey towards more self-generated speech. MAIN CONTRIBUTION: Prior research in the field of echolalia has generally been segmented into opposing viewpoints. A paucity of work in the echolalia field has meant that there is limited work that has sought to view how a communicative function to echolalia has been ascribed from across multiple disciplines and fields. As such, there is limited literature to guide the practice of classroom educators. This review combines communicative models from across various disciplines with the view to supporting classroom educators by providing guidance on how they might assist their students with echolalia. This review represents the first contribution to the research literature in this area. CONCLUSIONS AND IMPLICATIONS: Research into echolalia did not originally emanate from the field of education; however, anecdotes from classroom educators were cited as the primary impetus for the creation of some of the communicatively functional models. We found that although there are many techniques that researchers have used to attribute a communicative function to echolalia, some of these can be easily employed by educators in their practice. By adopting these techniques, educators are placed in a position that may assist with the identification of communicative echolalia; subsequently they are better placed to acknowledge and respond to their students.
-
ItemThe Characteristics of Effective Staff Teams in Disability Services(Wiley-Blackwell Publishing, 2019-01-01)People with autism and other developmental disabilities are often supported by staff teams in accommodation, day support, and employment services. Although the literature outlines a number of individual staff characteristics that can influence the “quality of support,” there is a paucity of research investigating the characteristics of teams as a whole. Given the emphasis placed on “team work” in human services, this study investigated what constitutes the characteristics of an effective team in disability services. An online Delphi study was employed, whereby disability support staff and their managers answered a series of surveys to build a consensus as to “what constitutes an effective team.” The emerging consensus was analyzed using inductive thematic analysis, descriptive statistics, and the intraclass correlation coefficient. A consensus emerged concerning three core elements which combined constituted an effective staff team. In order of importance, these were a shared focus on client outcomes, effective leadership, and good communication among the team. However, a range of additional factors were also identified. These represented additional considerations that were, in the opinion of the participants, also important to building and maintaining an effective team. Focusing on client outcomes, fostering effective leadership, and ensuring good communication are necessary, but insufficient to establish an effective staff team. The implications are discussed in the context of policy development concerning staff recruitment, team development, supervision, and service evaluation.
-
ItemTrained assistance dogs for people with dementia: a systematic review(WILEY, 2020-02-17)This systematic review investigated evidence for the effectiveness of trainedassistance dogs as an intervention and support for people with dementia.Peer-reviewed articles were retrieved from multiple databases (SCOPUS,Web of Science, and Google Scholar).
-
ItemThe Scope-University of Melbourne Partnership Submission to the Senate Select Committee on Autism(The University of Melbourne, 2020-07-02)This submission is a collaboration between one of Australia’s leading disability service providers and leading academics from the University of Melbourne on key issues relating to the services, support and life outcomes experienced by Autistic people in Australia and the associated need for a National Autism Strategy. The submission is grounded in research evidence and contains both policy and practice recommendations. Importantly, several of the contributors to this submission identify as Autistic, and in addition to their academic and professional experience bring to the submission the expertise of their lived experience. The Scope-University of Melbourne Partnership submission to this inquiry will focus on key issues relating to the services, support and life outcomes experienced by Autistic people in Australia, specifically focusing on the areas of advocacy, education, employment, health and mental health and the NDIS.