Parental Experiences of Engaging With the National Disability Insurance Scheme for Their Children: A Systematic Literature Review

Russo, Fiona; Brownlow, Charlotte; Machin, Tanya

doi:10.1177/1044207320943607

Cited by 11 publications

(6 citation statements)

References 20 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The administrative burden associated with the NDIS has been well documented, for both scheme participants and service providers (Carey, Dickinson, Malbon, Weier, & Duff, 2020; Foley, Attrill, McAllister, & Brebner, 2020; Mavromaras, Moskos, Mahuteau, & Iskerwood, 2018; Olney & Dickinson, 2019). Research has shown that individualized funding schemes, which rely on participant and carer self‐advocacy and ability to navigate complex administrative systems, are more accessible for well‐educated, native English‐speaking, and assertive individuals and families (Heneker, Zizzo, Awata, & Goodwin‐Smith, 2017; Mavromaras et al, 2018; Owens et al, 2017; Russo, Brownlow, & Machin, 2020). This was likely a factor in some of the variation in support our respondents experienced with the NDIS during COVID‐19.…”

Section: Discussionmentioning

confidence: 99%

Flexibility in individual funding schemes: How well did Australia's National Disability Insurance Scheme support remote learning for students with disability during COVID‐19?

et al. 2020

View full text Add to dashboard Cite

Individualized funding schemes are designed to offer people with disability greater choice and control over the services they receive. In this research, we report on a survey of over 700 families to explore how Australia's National Disability Insurance Scheme (NDIS) supported children and young people and their families to learn remotely during COVID‐19. NDIS funding to support education during the first COVID‐19 lockdown period forms an important case study of the flexibility of individualized funding schemes. Our results suggest that participant experiences varied widely, with some people able to make the changes they required and others left with a significant service gap. This shows that individual funding schemes are not necessarily more flexible than traditional systems in an emergency situation—useful flexibility depends on many factors, such as clarity of information giving, all actors having a shared message, proactive support of flexibility initiatives, and participants' ability to quickly navigate a complicated system. This research also highlights problems with the interface between the NDIS and mainstream services such as education.

show abstract

Section: Discussionmentioning

confidence: 99%

Flexibility in individual funding schemes: How well did Australia's National Disability Insurance Scheme support remote learning for students with disability during COVID‐19?

et al. 2020

View full text Add to dashboard Cite

show abstract

“…While the NDIS has many benefits, it places significant responsibility on caregivers, particularly in advocating for their children and managing their plans. Families have also expressed some frustration that the scheme is tailored towards individual adults instead of families and carers (Russo et al, 2021 ). Collectively this body of evidence suggests that there are significant gaps in meeting caregivers’ support needs and well-being needs.…”

mentioning

confidence: 99%

The Well-being and Support Needs of Australian Caregivers of Neurodiverse Children

D’Arcy

Burnett

Capstick

et al. 2023

J Autism Dev Disord

View full text Add to dashboard Cite

Caregivers of children with neurodiverse needs are known to experience challenges and hardship due to the increased needs of the child and the lack of support available. This study aimed to explore the support needs and well-being of caregivers of children with neurodiverse needs in Australia. Sixty-six caregivers participated in an online survey asking questions about support needs. The results highlighted five main themes that caregivers commonly experienced including: barriers to community engagement, impact on close relationships, negative impact on mental health and identity, financial hardship, and identified support needs. Findings identified multiple unmet needs existing amongst caregivers and further emphasises the importance of addressing these needs to improve the quality of life of caregivers of children with neurodiverse needs.

show abstract

“…This difficulty is worse for people with an intellectual/cognitive disability, complex needs, complex communication needs, Aboriginal and Torres Strait Islander people and people who speak English as a second language. [18][19][20][21] These barriers influenced the process of developing plans and whether participants felt supported, less anxious and listened to during the process. 19 Previous research in individualised planning with people with disability demonstrates the importance of skilled staff and a commitment to a person-centred approach.…”

Section: What Is Already Known On This Subject?mentioning

confidence: 99%

“…The research suggests that without an advocate or assistance to navigate the planning process, many people with disability and/or their carers find it difficult to articulate their needs and goals during this process. This difficulty is worse for people with an intellectual/cognitive disability, complex needs, complex communication needs, Aboriginal and Torres Strait Islander people and people who speak English as a second language 18‐21 . These barriers influenced the process of developing plans and whether participants felt supported, less anxious and listened to during the process 19…”

Section: Introductionmentioning

confidence: 99%

The experiences of people with disability and their families/carers navigating the NDIS planning process in regional, rural and remote regions of Australia: Scoping review

Veli-Gold

Gilroy

Wright

et al. 2023

Australian J Rural Health

View full text Add to dashboard Cite

Background Australia's National Disability Insurance Scheme (NDIS) was launched in 2013 to provide financial support packages for people with disability to purchase supports and services to enhance independence. People with disability are required to develop a plan with the National Disability Insurance Agency (NDIA), the government department responsible for managing the NDIS. This scoping review aims to ascertain the level of research into people's experience of the NDIS planning process in these geographic areas. Methodology Research publication databases were searched using a specific search string to identify research about people with disability and their families/carer's experiences of the NDIS planning process in regional, rural and remote regions of Australia. The Mixed Methods Appraisal Tool (MMAT) was adopted to appraise the quality of the research publications. Research publications focused on Aboriginal and Torres Strait Islander people were additionally appraised using the Aboriginal and Torres Strait Islander Quality Appraisal Tool developed by the Centre for Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. A thematic synthesis of the publications' contents was undertaken to ascertain people with disabilities and carers experience of the NDIS planning process. Results Ten (N = 10) research papers were found that met the inclusion criteria. Two papers were policy reviews and reported on the improvements of the NDIS planning process since its conception. The analysis found the research archive focused on five themes: (1) healthcare workforce and NDIA staff; (2) NDIS package holders and carers lack of awareness of the NDIS; (3) cultural/socio‐economic barriers; (4) travel funding; and (5) emotional burden of the NDIS planning process. Conclusion There are limited papers available that explore people's experiences of the NDIS planning process in regional, rural and remote regions of Australia. This systematic review illuminates the difficulties, barriers and concerns of people with disability and their carers about the planning process.

show abstract

Parental Experiences of Engaging With the National Disability Insurance Scheme for Their Children: A Systematic Literature Review

Cited by 11 publications

References 20 publications

Flexibility in individual funding schemes: How well did Australia's National Disability Insurance Scheme support remote learning for students with disability during COVID‐19?

Flexibility in individual funding schemes: How well did Australia's National Disability Insurance Scheme support remote learning for students with disability during COVID‐19?

The Well-being and Support Needs of Australian Caregivers of Neurodiverse Children

The experiences of people with disability and their families/carers navigating the NDIS planning process in regional, rural and remote regions of Australia: Scoping review

Contact Info

Product

Resources

About