National Disability Insurance Scheme Research Articles

Perceived barriers and enablers to utilising the Australian National Disability Insurance Scheme for adults with an intellectual disability and their families: A scoping review.

The introduction of the National Disability Insurance Scheme (NDIS) in Australia in 2013 promised significant improvements in the lives of adults with intellectual disabilities. Although the scheme enables support, there are challenges associated with establishing eligibility and administering funds. This scoping review explored perceived barriers and enablers to effectively utilising the NDIS for adults with intellectual disabilities and their families. A scoping review of the empirical literature on the NDIS and intellectual disabilities included nine studies in this review. These papers were subjected to thematic analysis and the findings were presented as a narrative synthesis. The key themes identified were: (1) Limited understanding of the NDIS process; (2) Language use and capacity assumptions; (3) Unrealistic goals and progress, and difficulty utilising plans; (4) Expectations of families and associated workloads; (5) Opening up opportunities not previously available; (6) Knowledgeable planners who actively seek to involve adults and their families. Although qualitative studies demonstrate that adults with an intellectual disability and their families are largely satisfied with the increased opportunities the NDIS has afforded them, there are various areas in which accessibility to services can be improved. In order for the NDIS to continue to improve, the results from this scoping review underline the need for adults with an intellectual disability and their support systems to have their voices heard and be utilised.

Do Service Providers Play a Market Stewardship Role in Social Care Quasi-Markets and Should They?

Market stewardship of social care quasi-markets has been an important area of inquiry. While most focus has been on central government stewardship, local level actors can also play a role. Using a case study of the Australian National Disability Insurance scheme, this article focuses on both how service providers can be market stewards and whether they should be. Findings suggest that while some aspects of market stewardship are appropriate for service providers to perform, others may be better done by different actors. We propose a preliminary framework for distributed stewardship to help join up the work of local level actors with central agencies.

Agendas of Reform: Continuity and Change in Australia’s National Disability Insurance Scheme (NDIS)

This article used text mining processes to map continuity and change in policy principles of the National Disability Insurance Scheme (NDIS) in Australia and reflect on the underlying agendas of reform. Specifically, this research aimed to: (1) examine the substantive content of the NDIS legislative, operational and reform documentation, (2) assess changes in objects, principles and issues over time, and (3) discuss the implications of these shifting logics and agendas. To achieve this, text mining approaches were applied to ten key NDIS documents from 2011 to 2019. The findings included a low prevalence of ‘rights’-based terminology, sustained attention to Scheme ‘costs’ but limited latterly attention to ‘sustainability’, and increasing prominence of interpersonal (e.g., ‘family’, ‘community’) and decision-making terminology (e.g., ‘decision’, ‘review’). How these shifts have influenced subsequent proposed reforms is explored and ongoing dilemmas about designing policy that ensures rights and entitlements, while balancing cost, sustainability and consistency are identified.

Supported decision-making and the Disability Royal Commission

Throughout its proceedings and in its Final Report, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability gave considerable prominence to supported decision-making as a means for achieving the human rights of people with disabilities. It sought input on supported decision-making from people with lived experience, roundtables, public hearings, and commissioned independent research on supported decision-making and proposals for reform. Practical challenges raised at the roundtables and by witnesses included the resources needed for education, training, and capacity building, and the challenge of finding supporters for people who were isolated. Evidence was given that legal reform was only one aspect of what was needed to embed supported decision-making into sectors and services to improve the lives of people with cognitive disabilities. The Commission’s Final Report endorsed a set of national supported decision-making principles, with many of these principles underpinned by the evidence received and commissioned research. However, overall, the Commission’s recommendations were overly focused on reform of guardianship and administration systems, and implementation guidance was lacking. The Commission also missed an opportunity to recommend legislative and practice reform beyond guardianship systems, into multiple services and sectors including the National Disability Insurance Scheme, the health system, and the public sector more widely.

Aligned or misaligned: Are public funding models for speech-language pathology reflecting recommended evidence? An exploratory survey of Australian speech-language pathologists

Government subsidised funding arrangements serve as an essential medium for families to access private speech-language pathology (SLP) services in Australia. This study aimed to investigate whether, from a provider perspective, contemporary public funding models (PFMs) align with best-available scientific evidence for management of children and young persons with swallowing and communication disorders within Australian private-practice settings. This exploratory study was distributed to paediatric speech-language pathologists throughout Australia via an online survey. A total of 121 valid surveys were completed by Australian speech-language pathologists with divergent career experiences. In comparing three familiar PFMs using mixed effects logistic regression models to estimate odds ratios, results indicated that perceived congruence with recommended scientific evidence for SLP management varied across PFMs: the odds of failing to align with scientific evidence was 4.92 times higher for Medicare’s Chronic Disease Management Plan (MBS_CDMP) than for the National Disability Insurance Scheme; and 7.40 times higher in comparison to Medicare’s Helping Children with Autism initiative. This study is the first to report on (in)congruence between PFMs that provide access to independent Australian SLP services for children and young persons and best available scientific evidence to inform clinical practice. Participants identified that: (a) four out of seven contemporary PFMs were unfamiliar to speech-language pathologists; and (b) MBS_CDMP initiative failed to align with the evidence-base for best scientific SLP management.

Australian child and adolescent mental health services

We aim to describe the Australian child and adolescent mental health system, which has its historical origins in the child guidance clinic, with recent efforts at modernisation to meet community needs and major policy innovations, including the National Disability Insurance Scheme (NDIS) and expansion of digital/telehealth services. Shared funding/responsibility across commonwealth and state/territory governments has resulted in country-wide variations, allowing innovation but also introducing fragmentation and duplication. The increase in demand outstripping supply (which was exacerbated by workforce shortages resulting from the pandemic), the lack of robust evaluation, and poor service integration (which make navigation difficult for families) are ongoing challenges.

Regulating vulnerability: policy approaches for preventing violence and abuse of people with disability in Australian service provision settings

This article analyses policy frameworks designed to protect people with disability from harm in service provision settings and respond to their experiences of violence, abuse, neglect, and exploitation, with a focus on the Australian National Disability Insurance Scheme (NDIS). The creation of a new disability services market has facilitated greater choice and empowerment for NDIS participants, but has also exposed them to new risks and vulnerabilities. Drawing on feminist vulnerability theory, a policy audit, and qualitative research with seventeen key stakeholders, the article reflects on the need to incorporate more nuanced understandings of vulnerability in safeguarding policy and respond to the situational and pathogenic vulnerability created by the way systems and structures operate. It identifies opportunities to enhance the personal autonomy of people with disability through accessible pathways for complaints and justice, and greater focus on natural and mainstream safeguarding systems in complementing disability-specific systems.

'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.

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.

'Hearts' and 'minds': Illustrating identity tensions of people living and working through marketising policy change of allied health disability services in Australia.

Service-based caring sectors like disability are increasingly being operated via market logic, including shifts towards personalised funding. These shifts must be brought to life in/through people already located in relation to ideas and values that underpin historical policies. Our manuscript examines how identities are re/shaped in relation to marketised policy change and explores how identity change unfolds (or not) during periods of transition: situated within the transition to the National Disability Insurance Scheme executed in Australia as a major disability funding reform. Our qualitative dataset involves interview and focus group data collected with service recipients/carers (n = 28), providers/managers (n = 17) and advocates (n = 2) during shift from government- to personally-controlled funding of allied health services for people with disability in Australia (2017-2020). We used layered sociological inference to develop and interrogate processes of tension and identity change amidst lived experience(s) of policy change. Our analysis elucidates how various identities were encouraged, desired, resisted and constrained in relation to the policy transition. We bring together sub-themes from analysis of recipient/carer data (getting value-for-money; critiquing service quality; and experiencing system shortfalls) and manager/provider data (learning to transact; the call to care; and structural frictions in/and identity transitions) to interpret that recipients/carers are Feeling (like) the dollar sign and that managers/providers are Troubling profits. In both cases 'hearts' and 'minds' are perceived to be diametrically opposed and symbolic in/against processes of marketisation. We synthesise our data into an illustrative framework that facilitates understanding of how this perception of opposed 'hearts' and 'minds' seems to constrain the identity transitions encouraged by personalised funding, and explore ways in which desired identities might be supported amidst marketising policy transition.

Positive behaviour support under the National Disability Insurance Scheme in Australia: Barriers, enablers and support needs from the perspective of practitioners

AbstractThis paper examines the experiences of behaviour support practitioners providing positive behaviour support (PBS) under the Australian National Disability Insurance Scheme (NDIS), including perceived barriers and enablers of practice, and ongoing support needs. It reports on data provided by NDIS PBS practitioners (n = 392) in a cross‐sectional mixed methods survey employed to examine the characteristics and experiences of behaviour support practitioners working across Australia. Qualitative data from open‐ended questions were analysed using inductive thematic analysis. The key barriers to practice included “the current service systems,” “engaging and collaborating with stakeholders” and “limited PBS expertise across the sector.” Enablers of good practice related to “organisation systems and practice supports/tools,” “practice supervision” and “quality training and professional development opportunities.” Ongoing support needs identified included the need for “further PBS training,” “improved service systems” and “access to clinical supports and practice guidance.” Findings suggest that whilst some practitioners report positive experiences, a large majority experience significant barriers to their PBS practice. They describe potential supports to overcome these barriers, which emphasise the need for further PBS training, clinical supervision/oversight and more efficient service systems. Findings have implications for PBS practice, policy and research in Australia.

Supporting healthy ageing for people with intellectual disabilities in group homes: Staff experiences

ABSTRACT Background This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding. Method Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services. Findings Four themes emerged. The first captured the staff’s limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents’ healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS). Conclusions Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents’ healthy ageing.

Behaviour support provision in Australia: A cross‐sectional survey of practitioners developing behaviour intervention plans

AbstractThere is currently a limited understanding of the characteristics of the workforce of behaviour support practitioners in Australia. A better understanding will help future considerations of training requirements, professional credentialling and associated professional regulation. A cross‐sectional online survey captured the demographic and work‐related characteristics of those who develop behaviour intervention plans for people with disability in Australia. The sample (n = 423) was primarily female (78 per cent), aged 26–45 years (57 per cent) and held a graduate (39 per cent) or postgraduate (53 per cent) degree. The largest single professional group was psychologists (28 per cent). The most common duration of experience was 1 year. Approximately half of the respondents were allied health practitioners either registered with the Australian Health Practitioner Regulation Agency or a member of the National Alliance of Self‐Regulating Health Professionals. The majority of practitioners had registered with the National Disability Insurance Scheme to provide behaviour support services (85 per cent). Both clients and services were concentrated in metropolitan regions, raising concerns regarding equity of access to behaviour support in remote communities, and among Aboriginal and Torres Strait Islanders. Given the vulnerability of many people with disabilities in receipt of behaviour support, ongoing policy and procedure work is needed to ensure professional credentialling and regulation of the workforce.

National Disability Insurance Scheme timeframes and functional outcomes for inpatient rehabilitation patients: a 5-year retrospective audit.

Objective The aim of this study was to compare National Disability Insurance Scheme (NDIS) timeframes and functional outcomes for a patient population managed in an inpatient hospital rehabilitation unit. Methods A retrospective hospital audit was undertaken of adult patients admitted to a tertiary-level, regional inpatient rehabilitation unit between January 2017 and December 2021 who were either referred, or not, to the NDIS. A hospital NDIS patient database, Australasian Rehabilitation Outcome Centre episode data, and patient medical records were analysed. The main outcome measures included actual rehabilitation length of stay versus expected length of stay, and Functional Independence Measure (FIM) efficiency for all inpatients, with NDIS timeframes analysed for the NDIS-referred patient subgroup. Results Rehabilitation inpatients referred for NDIS services significantly exceeded expected rehabilitation length of stay compared to those not referred to the NDIS. Furthermore, expected length of stay was significantly exceeded for those patients who required implementation of a NDIS plan to safely transition from hospital. FIM efficiency was significantly lower for patients referred to the NDIS. Recent improvement in timeframes for being accepted as a NDIS participant did not reduce length of stay. Conclusions NDIS timeframes for rehabilitation inpatients incur a significant opportunity cost for the provision of efficient inpatient rehabilitation services that are unaccounted for in current benchmarking performance standards.

Speech-language pathologists’ practices and perceptions of parent involvement in paediatric services funded by the NDIS in Australia

Purpose: There has been concern that a shift in disability funding to the National Disability Insurance Scheme (NDIS) in Australia may have influenced paediatric speech and language intervention to involve parents less in service delivery. This study aimed to describe paediatric speech-language pathologists’ (SLPs) practices and perceptions of parent involvement in NDIS-funded speech and/or language intervention. Method: Seventy-two paediatric SLPs currently practicing in Australia with NDIS-funded speech and/or language clients completed an online survey. The survey assessed SLPs’ self-reported practices supporting parent involvement through Likert scale responses and included open-text questions about perceived barriers and facilitators in NDIS-funded intervention services. Results from the survey were analysed using descriptive statistics, significance testing, and thematic analysis. Result: The majority of SLPs indicated commitment to involving parents in intervention. Experienced SLPs used more family-centred practices and Department of Education (DE)-based SLPs used fewer. Barriers arose from SLP, parent, and workplace characteristics. Facilitators included communication and rapport building, utilising a family-centred model of service delivery, and parent characteristics. Conclusion: This self-selected sample of Australian SLPs utilised many techniques to facilitate parent involvement within NDIS-funded paediatric speech and language intervention. Results indicate NDIS-funded SLP services for families are family focused.

Challenges to accessing behaviour support services for people with intellectual disability before and after the NDIS

ABSTRACT Background This study investigated the extent to which behaviour support services are accessible under Australia’s National Disability Insurance Scheme (NDIS). Method We conducted semi-structured interviews with families who support a member with an intellectual disability and challenging behaviour. We analysed this data with a supply and demand access framework initially designed for health care and described the lived experiences of participants and their families accessing behaviour supports. Results show that while the NDIS has improved participants’ ability to pay for behaviour (and other) supports, this financial capacity represents only one of six other important aspects of access. Results Families compensate for the shortcomings of the marketised environment which has arisen under the NDIS. Conclusion This raises questions about the responsibilities of support provision, which is obscured in the new NDIS system and places responsibility for successfully accessing behaviour supports onto the family of the person with an intellectual disability.

The changing narrative of early childhood intervention in Australia: Service providers’ perspectives on the implementation of the National Disability Insurance Scheme

The Australian National Disability Insurance Scheme (NDIS) completed its roll-out in 2020 with the objective of addressing the inadequacies of a fragmented and underfunded service system for people with disabilities. Under the scheme, young children with disabilities or developmental delay can now access services through the Early Childhood Approach, which is delivered by a range of not-for profit and for-profit organizations. Considering the significance of the resulting service system changes and the critical role of service providers, the aim of the present study was to examine their experiences in the State of Victoria. Forty-five service providers participated in interviews and focus groups which generated information grouped into four themes: (1) A changed orientation; (2) Early childhood intervention (ECI) practice; (3) ECI workforce; (4) The potential for a new system. Participating service providers reported several challenges in their quest to effectively support children and their families. It is concluded that for the NDIS to fulfil its promise and potential, revisions and adaptations of its systems and policies that incorporate the current ECI evidence-based knowledge and translation into real-world implementation are required.

“Thin markets”: Recruitment and retention of disability staff to support effective post‐parental care planning in rural Australia

AbstractThe life expectancy of persons with intellectual disability is increasing, and this is often occurring concurrently with the aging of their long‐term parental carers. Research in both Australia and around the world indicates that proactive post‐parental care planning is not widely implemented, and transitions primarily happen suddenly following a personal crisis for the primary caregiver. Little focus in Australia has been placed on identifying the barriers that inhibit post‐parental care planning in rural areas, specifically in the context of the newly implemented National Disability Insurance Scheme. This paper examines the factors that limit disability services and their staff in supporting successful post‐parental care planning for individuals with intellectual disability and their aging carers in rural South Australia. Small focus groups were conducted with three groups of rural disability support workers using online technologies to assist with the participants' geographic disparity. A semi‐structured interview guide was developed prior to commencement and was used to initiate discussions on key points. A thematic analysis methodological approach was used for data analysis. There were three themes identified through the analysis; Recruitment; Provision of Care; and Retention. The key findings relating to these themes are presented and supported with exemplar quotes. This research proposes three recommendations for policy or practice change: developing a national advertising campaign for new disability staff that positively emphasizes the high‐level skillset need for proactive planning; supporting rural disability providers to collaborate to establish shared teams of staff with expertise in post‐parental care planning; and, using incentive payments to retain staff with these invaluable skillsets in the disability sector.

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.

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.

Decolonising disability: weaving a Quandamooka conceptualisation of disability and care

This manuscript delves into Indigenous experiences of disability, specifically the Quandamooka community, starting with contextualising disability among First Nations people in Australia. It summarises criticisms of the National Disability Insurance Scheme (NDIS) and offers historical insights into Quandamooka country and Indigenous disability in Australia. Central to this manuscript are Quandamooka caring principles which highlight disability’s cultural significance and its triadic essence within Quandamooka society. Collectively, these principles underpin social connections, encompassing elements like collective wisdoms and the custodial ethic. These foundations yield pillars of collective protection, activated through kinship circles. These insights resonate with disability themes for Maori peoples where fostering compassion, acceptance, support, and interdependence are important for well-being.

Riding the tides: Directions in mental health rehabilitation in NSW.

This paper outlines the evolution of mental health rehabilitation in NSW, where allocation of health resources has repeatedly contradicted the policy intention to reorient services from inpatient to community-based services, leaving community rehabilitation the poor and disconnected cousin of inpatient services. The expanding role of community-managed organisations (CMOs) in psychosocial rehabilitation, the introduction of the National Disability Insurance Scheme (NDIS), and emerging service models have helped foster a maturing housing and social care environment, but present reality and the integration of health and social care services remains at a distance from best evidence practice. The challenge of the next decade of mental health reform is to embrace and consolidate greater service diversity and complexity. Understanding what factors influenced present reality is important in providing guardrails for the future, enabling the current wave of renewal and reinvestment in NSW to build on the strengths of past developments and steer a course around their weaknesses.