Impeded choice and control within the NDIS: experiences of people living with psychosocial disability

Hamilton, Debra; Hancock, Nicola; Scanlan, Justin Newton

doi:10.1080/09687599.2023.2263629

Cited by 4 publications

(11 citation statements)

References 28 publications

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“…While similar outcomes have been reported elsewhere (Carstensen et al., 2017; Johnston et al., 2019; Pascoe et al., 2022; Roennfeldt et al., 2021), people with PSD and NDIS plans experience of EDs draws our attention to the static nature of NDIS plans and their inability to deal with fluctuating condition (Hamilton et al., 2020, 2023). Indeed, although their presentation to the ED has occurred in a desperate attempt to gain assistance, the seriousness of their need is unseen and unacknowledged (Pascoe et al., 2022).…”

Section: Discussionsupporting

confidence: 73%

“…As such the NDIS is a fee for service model (Stampoulis‐Lyttle, 2019) with the aspirational motive of enabling empowerment and autonomy through ‘Choice and Control’ while respecting Human Rights (NDIS, 2013). This important principle is not always achieved in practice (Hamilton et al., 2023). For example, care providers can be limited in delivering services required (Langmead, 2018; Stampoulis‐Lyttle, 2019) due to the cost of service delivery or staffing issues.…”

Section: Introductionmentioning

confidence: 99%

“…To respond to tensions between the NDIS and the fluctuating nature of PSD the NDIA Recovery Framework was introduced in 2021 (NDIS, 2021b). However, the effects of the framework have yet to be investigated (Hamilton et al., 2023; Mellifont et al., 2023). There is a need for research understanding patterns of crisis support for people with PSD on NDIS plans, including consumer and carer experiences of emergency care and interactions between EDs and NDIS providers.…”

Section: Introductionmentioning

confidence: 99%

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I have not come here because I have nothing better to do: The lived experience of presenting to the emergency department for people with a psychosocial disability and an NDIS plan—A qualitative study

McIntyre,

Loughhead,

Hayes

et al. 2023

Int J Mental Health Nurs

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Almost 60 000 people have a psychosocial disability (PSD) and a National Disability Insurance Scheme (NDIS) plan. As PSD can be a fluctuating condition, people with a PSD and an NDIS plan, at times, may require crisis care and present to the emergency department (ED). This national study explored the experiences of people with a PSD and an NDIS plan when presenting to the ED. To understand the unique lived experience of people with a PSD and an NDIS plan, semi‐structured interviews were conducted with 24 people between March and November 2022 and were analysed thematically. A lived experience advisory group was engaged as part of the research team. Participants were asked about their experiences in the ED including barriers to therapeutic care and what worked well. Participants reported emotional distress caused by receiving a biomedical rather than a person‐centred mental health response. A previous mental health history overshadowed diagnostic decisions and most participants interviewed stated they would not choose to return to the ED. Half of the participants spoke of one presentation only where needs were met. Four main themes emerged from the data: (a) Diagnostic overshadowing; (b) Judgement and stigma; (c) Waiting without hope; and (d) If things went well. This study provides evidence of the unique lived experience of people with a PSD and an NDIS plan when presenting to the ED. The results highlight the need for clinicians in the ED to understand the complexity and nuances of supporting people with a PSD. Recommendations for a person‐centred care approach are provided. Alternative support options for this group of people need to be explored.

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Section: Discussionsupporting

confidence: 73%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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I have not come here because I have nothing better to do: The lived experience of presenting to the emergency department for people with a psychosocial disability and an NDIS plan—A qualitative study

McIntyre,

Loughhead,

Hayes

et al. 2023

Int J Mental Health Nurs

View full text Add to dashboard Cite

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“…Barriers to accessing the NDIS for persons with a psychosocial disability has come under increased scrutiny on account of its complex application process, difficulty in finding supports ( 14 , 52 ) and reports that the Scheme sometimes made things worse rather than better for people experiencing disability associated with mental illness ( 53 ). Addressing these issues requires intervention both within individual funding schemes and the broader policy environment ( 54 ).…”

Section: Discussionmentioning

confidence: 99%

Shortcomings of services for persons with severe and persistent mental health challenges: a qualitative study of service users and family carers

Isaacs,

Lambert,

Lawn

et al. 2024

Front. Psychiatry

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IntroductionThe opinions of service users and carers are crucial to identifying ways to innovate and implement system change. This study aims to explore the views and experiences of service users and carerson the services they have used for their mental health challenges and their suggestions for service reform.MethodsTwenty participants (15 carers and 5 service users) were interviewed for the study.ResultsEight categories emerged from the data. They were: Several gaps in the system, Barriers to accessing services, Services are not fit for purpose, Services operate in isolation, System is not person focused, Service users and carers are treated poorly, Services are overloaded and under resourced and Recommendations for service reform. Respondents reported that a persistent lack of funding and resources for mental health services was a main cause of these shortcomings. Respondents also noted that innovations were needed to re-orient services to enable continuity of care, and training of mental health professionals was needed for a better understanding of the needs of service users and their carers.DiscussionAdditional research is needed with larger and more diverse samples to further explore these findings.

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“…As Australia has moved from a predominantly state‐run disability support sector to a market‐driven fee‐for‐service disability care system, a disconnect between services has become evident (Edwards, 2019). Emerging research reports communication disconnects between healthcare services and the NDIS leading to fragmented healthcare (Foster et al., 2022; Hamilton et al., 2023; McKenzie & Smith‐Merry, 2023). Moreover, it has also been reported that people with PSD have more challenges accessing NDIS supports (Devine et al., 2022) due to intersectional needs, plus being required to navigate multiple disability care providers, while still navigating across the health and mental health systems.…”

Section: Introductionmentioning

confidence: 99%

‘Everything would have gone a lot better if someone had listened to me’: A nationwide study of emergency department contact by people with a psychosocial disability and a National Disability Insurance Scheme plan

McIntyre,

Loughhead,

Hayes

et al. 2024

Int J Mental Health Nurs

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Australians with a psychosocial disability (PSD) and a National Disability Insurance Scheme (NDIS) plan may at times require emergency care due to the fluctuating nature of their physical and mental health conditions or when their supports have become insufficient. This nationwide study investigated the experiences of people presenting to an emergency department (ED) who have a PSD and an NDIS plan. The objective was to understand current care and communication practices and to provide recommendations for service integration. Twenty‐four interviews were conducted with people who had a PSD and an NDIS plan. Participants were asked semi‐structured questions about their experiences when engaging with NDIS processes and when engaging with the ED as an NDIS recipient and how communication practices could be improved between the two services. A qualitative, descriptive thematic analysis approach was used. A lived experience advisory group participated in the research and provided commentary. The findings of this study indicate that the NDIS, as a personalised budget scheme, presents challenges for people with complex PSD and physical needs. ED clinicians appear to be unclear about what the NDIS provides and communication between the two systems is fragmented and inconsistent. The themes identified from the analysed transcripts are: (a) People with PSD experience distress when dealing with the NDIS; (b) There's a blame game between the ED and the NDIS; and (c) Inadequate service integration between the ED and NDIS. Recommendations to assist with service integration include building service capacity, providing overlapping care and bridging the diverse biomedical, psychosocial and disability care services.

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Impeded choice and control within the NDIS: experiences of people living with psychosocial disability

Cited by 4 publications

References 28 publications

I have not come here because I have nothing better to do: The lived experience of presenting to the emergency department for people with a psychosocial disability and an NDIS plan—A qualitative study

I have not come here because I have nothing better to do: The lived experience of presenting to the emergency department for people with a psychosocial disability and an NDIS plan—A qualitative study

Shortcomings of services for persons with severe and persistent mental health challenges: a qualitative study of service users and family carers

‘Everything would have gone a lot better if someone had listened to me’: A nationwide study of emergency department contact by people with a psychosocial disability and a National Disability Insurance Scheme plan

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