Exploring the lived experience of the National Disability Insurance Scheme for school students with disability in NSW Australia

The NDIS at ten years: designing an equitable scheme for the next decade.

Australia's National Disability Insurance Scheme (NDIS) is the catalyst for a significant shift in the delivery of disability services to people with a disability and their families, including those residing in rural and remote parts of Australia. Allied health services in rural areas of Australia are often limited, existing services are characterised as being of a generalist nature and demand for services often exceeds service capacity. This shift in the delivery of disability services with the rollout of NDIS could have a poignant impact on the rurally based allied health providers delivering these services. The aim of this study was to explore in depth the experiences of providing clinical services under the NDIS in a rural area. Accessing the publicly available NDIS register, the authors purposively sampled service providers delivering services in rural or remote areas of the state of New South Wales (NSW). Participants consented by email to participate in a semi-structured interview during which they were asked about their lived experience providing services under the NDIS in rural NSW. Data collection and analysis were guided by phenomenology of practice. Interviews were audio-recorded and transcribed verbatim, and data were then thematically analysed. Eight service providers were interviewed, representing the disciplines of occupational therapy, nutrition and dietetics, speech pathology and physiotherapy. The locations of their service delivery varied across a range of rural and remote areas of NSW. Data analysis yielded three themes: (1) 'Beyond my depth', which described service providers' limited influence on the funding process their clients were now required to navigate as participants of the NDIS; (2) 'A sea of uncertainty', which described the inconsistencies demonstrated by the NDIS and its impact on service providers; and (3) 'Drowning in the wave', which described increases in service demand and changes to case mix as experienced by service providers. Additionally, the essence of providing services within the NDIS in a rural area was identified as 'Powerless facing the wave of change'. These findings offer insights into the particular challenges for rural clinicians in providing services under the NDIS. While there is improved funding support for people with a disability, this places additional pressure on rural clinicians who are already likely to be working at or beyond their workload capacity. Issues with recruitment and retention of new clinicians into rural and remote areas appear to be ongoing, which was identified as compounding the impact of the NDIS on existing service providers. Supporting the rural and remote workforce appears critical to avoid de-registration of existing NDIS service providers.

Recent media commentary on the operation of the National Disability Insurance Scheme (NDIS) has focused on costs, fraud, and preventing dubious provider practices. This discussion obscures the broader importance of the NDIS for overcoming the entrenched disadvantages that prevent people with disability fully participating in Australian society.1 However, disability support in Australia, provided by the NDIS or otherwise, is not equitable. Access to and the use of disability support varies widely for a variety of reasons, and people who need considerable support but are ineligible for the NDIS are left with a sparse array of uncoordinated support.2, 3 We hear about inequity time and time again from service providers and people with disability, but quantifying inequity is often difficult.4 The article by Disney and colleagues5 in this issue of the MJA provides much needed insights into the operation of the NDIS for different groups. The authors quantified socio-demographic differences in NDIS eligibility and resource allocation by analysing NDIS unit record data. These data are essential for understanding who is granted support by the NDIS, how much of the allocated support they use, and whether these outcomes differ by socio-demographic characteristics. Disney and his colleagues found that, in certain disability categories, applicants aged 55 years or older, women and girls, and people living in socio-economically disadvantaged areas were more likely to be found ineligible for the NDIS, as were people with psychosocial disability. The authors noted possible structural reasons, including the use of diagnosis-based eligibility lists that include, for example, autism, for which the eligibility rate is high, but not psychosocial disability-related diagnoses. People with conditions not included in these lists may have to provide more evidence to prove they are eligible for support.5 People with psychosocial disability or living in lower socio-economic status areas can find it more difficult to gather the evidence required because they cannot afford the private care providers who could provide the required information in formats more acceptable to the National Disability Insurance Agency (NDIA).6 We need qualitative research into decision making by the NDIA and how it assesses evidence, and to learn from NDIS participants about barriers to gathering the required information. Rural and remote regions are often also lower socio-economic status areas, and access in this areas to specialist assessments that would help people provide evidence of disability in an appropriate manner is more limited.7 Inequality of access is therefore linked to social inequities.8 NDIS eligibility criteria that disadvantage people who cannot afford the right type of evidence or obtain help with their application could further marginalise already marginalised groups. The study by Disney and colleagues excluded NDIS applications that were cancelled before submission. Characterising this group of applicants is important because it some people may not proceed with applications because of financial limitations or information requirements, or because of language or cultural barriers.9 Future studies should include such applicants, which may include, for example, First Nations Australians and people with psychosocial disability, as well as people who are homeless, among whom the prevalence of disability is high but participation in the NDIS lower than expected.6 The NDIS is designed to provide reasonable and necessary support, tailored to individual needs and goals, rather than offering equal access and funding for all. While the focus on equality by Disney and colleagues is welcome, the differences between equality and equity should be considered by future studies, recognising the heterogeneous support needs that may lead to different support use rates.10 Some people require more resources or different types of support to achieve their goals. Further, statistical methods such as interrupted time series analysis could be used to examine temporal trends, exploring how changes in NDIS operation, assessment rules, eligibility criteria, and external factors (such as the COVID-19 pandemic) affect access to the scheme and plan use. Researchers could also apply new approaches, such as equity impact analysis,11 to evaluate what has reduced gaps in outcomes between advantaged and disadvantaged groups. As all research depends on the data collected by the NDIA,10 it should employ a greater range of outcome measures that assess the impact of the NDIS on individual wellbeing, functional capabilities, and social and economic participation. Jennifer Smith-Merry and Kuo-Yi Jade Chang are funded by the Australian Research Council (Industry Laureate Fellowships). The partner for the fellowships is the National Disability Insurance Agency, which provides funding for a PhD scholarship and in-kind support for data collection. Jennifer Smith-Merry has received research grants from the Australian Research Council, the National Disability Insurance Agency, National Disability Services, the New South Wales Department of Education, and the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Commissioned; not externally peer reviewed.

The purpose of this study was to investigate the lived experience of parenting or caring for a person with a disability receiving services under the National Disability Insurance Scheme in rural Australia. Qualitative study guided by the phenomenology of practice. Rural areas of New South Wales (MM 3-7). Participants were 5 parents and one carer of people receiving National Disability Insurance Scheme services who resided in rural New South Wales. Participants engaged in a semi-structured interview about their lived experiences caring for someone accessing services under the National Disability Insurance Scheme in rural New South Wales. Interviews were audio-recorded, transcribed verbatim and analysed thematically. Three themes emerged from the data analysis. 'More than a disability' described the absence of understanding of family and carer challenges when National Disability Insurance Scheme plans were designed and implemented. 'Fighting for funding and services' described that while the National Disability Insurance Scheme increased funding support, parents and carers experienced limited support navigating the National Disability Insurance Scheme. 'Cold as Ice' encompassed parents' and carers' descriptions of their relationship with National Disability Insurance Scheme staff. These challenges were further impacted by the limited choice and availability of health service providers in rural areas. Participants felt that the National Disability Insurance Scheme had created additional stress and confusion in their lives and at times had hindered the achievement of the goals of their family member with a disability. The voices of parents and carers is a critical one, and it is essential that rural parents' and carers' needs are considered and supported in future planning of the National Disability Insurance Scheme.

Executive summary The National Disability Insurance Scheme (NDIS) is not a health scheme. The NDIS funds disability support and a range of related services designed to maximise the independence of a person with a disability. Health care is a specific exclusion. The NDIS is organisationally separate from both the health system and the aged care sector. At the national level, the NDIS is the responsibility of the Minister for Social Services (and not the Minister for Health) and is being administered by the National Disability Insurance Agency (NDIA), which is an independent statutory agency. While the NDIS is not a health scheme, and health care is a specific exclusion, it will intersect with the health system on a number of levels. To ensure the NDIS does not lead to fragmented care for participants, the Department of Health, the Department of Social Services and the NDIA will need to work closely to monitor and resolve any issues that arise during the implementation phase. This will require active, joint collaboration to develop appropriate policy responses. Recommendations for action 1. Establish formal Department of Health, Department of Social Service and National Disability Insurance Agency tripartite working group with the following roles and responsibilities: Education and information for key targeted audiences regarding eligibility requirement and other key implications of the NDIS and the National Injury Insurance Scheme (NIIS) Workforce implications monitored and addressed in a coordinated manner Patient inequity issues monitored and coordinated policy responses undertaken Permanent and fluctuating impairment required coordinated care and active policy responses Mental health implications need to be better understood and coordinate actions to be taken to overcome barriers Service prevision boundary disputes between health and disability sectors require a resolution mechanism through negotiation rather than determined solely by the NDIA Timely access issues monitored and a fast track system for hospital referrals to/from the NDIS developed Inconsistency with the 2011 National Health Reform Agreement monitored and addressed as appropriate 2. While it is the responsibility of the Department of Social Services and the NDIA to work toward a nationally consistent approach as the scheme moves to full roll-out, the Department of Health should monitor roll-out to ensure health services are not negatively impacted. 3. Review the NDIS evaluation in order to inform the health system with applicable lessons. At the system level, the NDIS presents opportunities to learn more about individualised service planning and funding, and better ways to measure need and outcomes.

In Australia, the National Disability Insurance Scheme (NDIS) seeks to ensure that disabled people can access the support they need to live an independent life. There is limited knowledge around the NDIS client experience of signing deaf people—people who use Auslan as their primary language. This article reports on a pilot study that explored signing deaf people’s experiences when accessing the NDIS to obtain a service package. Signing deaf people were invited to join a focus group and share their experiences. While all participants indicated that their initial contact with the NDIS and its provision of essential information through Auslan was adequate, they believed that access was difficult when they needed more detail. Also, all participants noted that NDIS staff members’ knowledge of signing deaf people’s life experience was an area for development. Overall, signing deaf people’s consumer experience of the NDIS did not appear to meet their expectations. Points of interest In Australia, signing deaf people can choose to be part of the new support system for disabled people - the National Disability Insurance Scheme (NDIS). Signing deaf people in this study liked the way the NDIS gave them information through their sign language, Auslan, however, when they wanted to get more detailed information - they could not find it. NDIS staff could develop their knowledge of signing deaf people’s life experience. Better staff knowledge can improve signing deaf people’s NDIS experience. The research shares signing deaf people’s experiences of the NDIS and adds to future research and better knowledge.

Introduction: The transition from schooling to adulthood is an important and complex time in a young person’s life, especially when they have a disability. For young autistic people, it is critical to receive the right support to ensure a successful transition. In Australia, disability supports are provided by the National Disability Insurance Scheme (NDIS), a scheme implemented and administered by the Australian Government (specifically the National Disability Insurance Agency [NDIA]) since 2013. Implementation of Australia’s NDIS has been inadequate in supporting the needs of many autistic young people. Autistic people are the largest group of participants in the NDIS. Support for this group is important considering the significant investment involved in the provision of NDIS funding, coupled with the potential negative consequences if they are not well‐supported. This study explores the experiences of key stakeholders in relation to young autistic school leavers and their challenges accessing NDIS Tier 3 individualized support packages. Method: This study adopted a qualitative methodology using a constructivist paradigm. This study draws on the perspectives of four key groups: young autistic people, parents/carers, educators, and disability service providers. Reflexive thematic analysis of the interview data was conducted. Findings: Two overall themes were identified. The first theme was related to fighting to get access to the NDIS, encompassing subthemes related to the NDIS maze, a heavy emotional and practical toll as well as inconsistencies in access. A second theme highlighted a worry for the future if autistic young people did not receive the support they needed postschool. Findings highlighted a range of difficulties accessing individualized funding packages (Tier 3) for autistic young people. There has been a critical failing of service provision at “Tier 2” of the NDIS (also referred to as information linkages and capacity building or foundational support), which was intended to facilitate access and participation in mainstream community services for people with disability. This placed additional pressure on Tier 3 and exacerbated the toll that interacting with the NDIS took on participants. Conclusion: Urgent work is needed to ensure that systems within the NDIS are funded appropriately and operating as intended to ensure good and equitable outcomes for autistic people leaving school.

IntroductionTraumatic brain injury (TBI) and spinal cord injury (SCI) are both major contributors to permanent disability globally, with an estimated 27 million new cases of TBI and 0.93 million new...

This narrative literature review examines key issues surrounding psychosocial disability support in the National Disability Insurance Scheme (NDIS). It highlights the NDIS's neoliberal approach to support, which has underpinned a lack of clarity around the conceptualisation of psychosocial disability and recovery. Several studies identified a mismatch between the episodic nature of mental illness and the NDIS's permanent disability criteria. Additionally, the review highlights the NDIS's inadequate consideration of social disadvantage in implementing support for individuals with psychosocial disability. Challenges in managing NDIS funding can result from both fluctuating mental health conditions and a lack of accessible information for informed decision‐making regarding service options. Findings highlight that the NDIS tends to employ a neoliberal approach focused on capacity building, which may not fully capture the qualitative and individualised aspects of recovery. Systemic and socio‐structural barriers within the NDIS and individual circumstances can hinder NDIS service users' decision‐making. In conclusion, the review emphasises the need for a diverse range of services tailored to the specific needs of NDIS participants with psychosocial disability to support their unique recovery processes. There is a need for further research to comprehend the multifaceted recovery processes and lived experiences of NDIS participants with psychosocial disability.

The introduction of a National Disability Insurance Scheme (NDIS) in Australia has changed the basis of service provision for people with disability. This mixed-methods study presents the experiences of parents of children with hearing loss during national rollout of the NDIS. Surveys were completed by 100 parents, with 57 parents reporting their child received NDIS funding. Individual interviews of seven parents in different locations provided further information. Between-group comparisons were made and regression analysis examined the influence of parental disadvantage on NDIS experiences. Qualitative data were analysed for themes and findings were triangulated. The NDIS has improved services for some children with hearing loss but initial access and ongoing navigation can be challenging for others. Barriers included a complicated system, planning delays, poor communication and uninformed National Disability Insurance Agency (NDIA) staff. This study suggests areas of refinement and further investigation that may improve services for children with hearing loss. Points of interest Parents of children with hearing loss in Australia had difficulty accessing the National Disability Insurance Scheme (NDIS) due to poor communication and delays. Parents reported the NDIS system was challenging and felt they needed high levels of education and advocacy skills to navigate the system and prepare information to justify necessary disability supports for their child. Parents were concerned that disadvantaged families would not receive adequate supports for their child with hearing loss due to the complexity of the NDIS. This small-scale national study indicates that recent and upcoming changes to the NDIS should be evaluated to ensure children with hearing loss can access equivalent funding packages and services regardless of family circumstances.

Currently there is limited understanding of how people living with severe andpersistent mental health issues use and experience the internet when searchingfor information regarding the National Disability Insurance Scheme (NDIS). Thisstudy aimed to investigate what information mental health consumers wantabout the NDIS and how they would find this online. A small exploratoryqualitative cross-sectional study was conducted using a naturalistic inquiryapproach. Brief semi-structured interviews were conducted to collect data fromnine mental health consumers living in Hobart, Australia. Three emergentthemes were identified, (1) knowledge about the NDIS; (2) internet usage; and(3) the importance of language. The findings highlighted that individualsaccessed NDIS information from a variety of sources with a preference forobtaining information from people rather than the internet. Of those who hadsearched online for NDIS related information, their level of understanding of thescheme was quite limited suggesting that information provided online was notadequately meeting their needs. More generally, participants reported difficultynavigating NDIS literature due to language complexity. Participants alsoreported confusion regarding specific aspects of the NDIS scheme and amisunderstanding of the roles and functions of the NDIS and Centrelink. Thesefindings suggest that the information provided to potential NDIS psychosocialparticipants does not meet their needs, and individuals want simple guidanceas to what the NDIS is, how it works, and what funding opportunities it offerspeople. Access to clear and easy to understand information for mental healthconsumers may support recovery via improved uptake of the NDIS.

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.

The aim of this scoping review was to map and synthesise peer-reviewed literature reporting on the Australian National Disability Insurance Scheme and psychosocial disability. The review followed the rigorous and systematic protocol of Arksey and O'Malley. Five databases were searched and, using strict inclusion and exclusion criteria, publications were identified for inclusion. Data were extracted from publications, tabulated and graphically presented. A qualitative analysis was also completed. Twenty-eight publications were included. While a wide range of issues were covered across this literature, only eight publications specifically focused on the National Disability Insurance Scheme. Almost half of publications were only author commentary without analysis of external data. There were no evaluations and a paucity of publications documenting the lived experiences of people with psychosocial disability or their families. Qualitative analysis identified 59 separate themes. These were grouped using a modified strengths, weakness, opportunities and threats framework. While it was acknowledged that the Scheme has the capacity to enrich people's lives and enhance service integration, themes relating to weakness and threats dominated within this literature. These included a variety of existing or predicted problems such as poor integration of a recovery philosophy into the National Disability Insurance Scheme, complex application processes creating barriers to access, concern for those ineligible or not accessing the National Disability Insurance Scheme, the need to ensure National Disability Insurance Scheme plans address specific, changing participant needs and that services will be available to provide required supports. Given the significant impact of the National Disability Insurance Scheme on the lives of individuals and the wider mental health service system, there continues to be surprisingly limited peer-reviewed literature reporting on experiences and outcomes of the Scheme for people living with psychosocial disability. Future research examining outcomes and shedding light on National Disability Insurance Scheme experiences of people with psychosocial disability and their families are particularly important for ongoing development and evaluation of the Scheme.

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. 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. 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. 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.

IntroductionIn Australia, children with cerebral palsy and complex disability receive funded supports through the National Disability Insurance Scheme (NDIS). This individualised funding scheme requires parents to navigate and advocate on behalf of their child, supported by expert reports, recommendations, and allied health services. Supports aim to enable participation in all areas of daily life, which may be otherwise largely inaccessible to children with complex disability and their families. This study aimed to explore the experiences of families of children with complex disability after 3 years accessing the NDIS.MethodsA qualitative research design with a demographic questionnaire and in‐depth interview was undertaken. Purposive sampling was used to recruit participants from one organisation providing occupational therapy and other allied health services. Data analysis implemented Braun and Clarke's thematic approach to examine the experiences of participants.Consumer and Community InvolvementThis research was conducted with a registered National Disability Insurance Scheme provider to give voice to parent consumers who raise children with complex disability.FindingsSeven mothers and one father (N = 8) of children with complex disability were interviewed. Most parents reported increased success and satisfaction navigating the scheme. Five overall themes were generated from the data: pivotal roles of families, parental empowerment, life‐changing equipment, the fallibility of the scheme, and a critical scheme.ConclusionParents reported reliance on the scheme for their child's basic daily care and a more enriched life for their child and family. Parents were grateful for the scheme but experienced inconsistencies, navigation difficulties, and variable choice and control. Most parents had fears about the sustainability of the scheme, translating into uncertainty about their child's future. Allied health professionals, including occupational therapists, are key advocates for children with complex disability and their families. Collaboration through sharing knowledge and skills to support children, their families, and carers is key to empowering parents to navigate the NDIS.PLAIN LANGUAGE SUMMARYThe National Disability Insurance Scheme (NDIS) provides funding for people with permanent and significant disability. Children with cerebral palsy (and other complex disability) are lifetime users of the NDIS. For children with complex disability, their families are crucial to ensuring that their daily needs are being met, including providing medication. Previous research indicated that parents rely on the NDIS to support their children; however, there have been various challenges such as long wait times for equipment and difficulty understanding how to use the scheme. This study explored the experiences of families of children with complex disability, after more than 3 years of being an NDIS participant. Eight parents from one therapy service provider completed a short questionnaire about themselves, their child, and their family, followed by an interview with the first author. Four authors (occupational therapists) worked together to design and implement this study. The findings highlighted several key points: the important role of parents as caregivers; parents became more knowledgeable and confident to navigate the NDIS with time; equipment funded by the NDIS was life‐changing; the NDIS has ongoing issues; and the crucial nature of the NDIS. Occupational therapists can be extremely important to families, including with supporting families to navigate the NDIS and advocating for them. Occupational therapists must stay current with their knowledge of the NDIS as they provide lifetime support, including prescribing equipment, technology, and home modifications.