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

Prowse, Alexandra; Wolfgang, Rebecca; Little, Alexandra; Wakely, Katrina; Wakely, Luke

doi:10.1111/ajr.12837

Cited by 6 publications

(1 citation statement)

References 13 publications

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“…Although 62 percent of NDIS participants are male, 68 percent of support workers are female, many of whom are sole traders or casual [26]. Tin markets in both urban and rural areas occur due to location and/or availability of NDIS support workers, limiting choice and control for people receiving services [27][28][29].…”

Section: Introductionmentioning

confidence: 99%

Let Us Keep the Emergency Department Safe: National Disability Insurance Scheme Supports Workers’ Experiences When Supporting People with Psychosocial Disability in the Emergency Department

McIntyre,

Loughhead,

Hayes

et al. 2024

Health & Social Care in the Community

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Internationally, community healthcare is provided by personal health budgets or personalised schemes as part of a consumer-directed care emphasis. Although the introduction of a personalised scheme in Australia has improved the lives of many, people with psychosocial disability (PSD) and their families have experienced many challenges with service integration. Six focus groups with 17 National Disability Insurance Scheme (NDIS) support workers were conducted between June and November 2022. Participants were asked semistructured questions about their engagement with emergency department (ED) clinicians when presenting with a person with PSD and NDIS plan. They were also asked how they contribute to service integration to improve communication practices between the two services. A qualitative, descriptive thematic analysis approach was used. Results indicate there is a need for improved service integration pathways between the ED and NDIS services. The thematic analyses identified five main themes: the ED is harmful and not safe, but nowhere else to go; make the ED safe; further training for ED staff; improving communication across services; and alternatives to the ED. This study reports NDIS support worker’s experience when supporting a person they are caring for in the ED. NDIS support workers have an understanding of the needs of the people they care for;their wisdom can contribute greatly to ED clinical responses in crisis care. Recommendations are offered to assist with service integration between the two systems.

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Section: Introductionmentioning

confidence: 99%

Let Us Keep the Emergency Department Safe: National Disability Insurance Scheme Supports Workers’ Experiences When Supporting People with Psychosocial Disability in the Emergency Department

McIntyre,

Loughhead,

Hayes

et al. 2024

Health & Social Care in the Community

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A good life for people living with disability: the story from Far North Queensland

Bird,

Bohanna,

McDonald

et al. 2023

Disability and Rehabilitation

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The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme

O'Neill,

Bourke‐Taylor,

Bhopti

et al. 2024

Aus Occup Therapy J

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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.

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

Cited by 6 publications

References 13 publications

Let Us Keep the Emergency Department Safe: National Disability Insurance Scheme Supports Workers’ Experiences When Supporting People with Psychosocial Disability in the Emergency Department

Let Us Keep the Emergency Department Safe: National Disability Insurance Scheme Supports Workers’ Experiences When Supporting People with Psychosocial Disability in the Emergency Department

A good life for people living with disability: the story from Far North Queensland

The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme

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