The lived experience of receiving services as a National Disability Insurance Scheme participant in a rural area: Challenges of choice and control.

OBJECTIVE: To explore the lived experience of people with a physical disability residing in a rural area and receiving services under the NDIS. SETTING: Rural areas of New South Wales classified as Modified Monash Categories 3-7. PARTICIPANTS: Semistructured interviews were conducted with seven purposively sampled participants who self-identified as having a physical disability, were receiving NDIS funding and lived in a rural area of NSW. DESIGN: Data collection and analysis were guided by hermeneutic phenomenology. FINDINGS: We interpreted three interrelated themes; Uncertainty of Access, Battling Bureaucracy and Improving Relationships and Independence. The themes articulate the essence of this phenomenon, Challenges to choice and control. DISCUSSION: The findings of this study suggest that while people with a physical disability living in rural NSW acknowledged positive changes to their everyday lives through the NDIS, there remains a sense of confusion, frustration and disconnection with the system. Burdensome, inconsistent and untimely communication with NDIS staff caused uncertainty with the process and required negotiation to resolve issues such as delays in funding, essential services or equipment modifications. The essence of Challenges to choice and control articulates what the person had to negotiate within their lifeworld. Further guidance and clarity for people with disabilities to access the NDIS system would ensure confidence to navigate the system and receive the essential supports they need.

Lived experience of parents and carers of people receiving services in rural areas under the National Disability Insurance Scheme.

OBJECTIVE: 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. DESIGN: Qualitative study guided by the phenomenology of practice. SETTING: Rural areas of New South Wales (MM 3-7). PARTICIPANTS: Participants were 5 parents and one carer of people receiving National Disability Insurance Scheme services who resided in rural New South Wales. DESIGN: 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. RESULTS: 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. CONCLUSION: 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.

Powerless facing the wave of change: the lived experience of providing services in rural areas under the National Disability Insurance Scheme.

INTRODUCTION: 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. METHODS: 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. RESULTS: 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'. CONCLUSION: 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.