Experiences of National Disability Insurance Scheme planning from the perspective of adults with intellectual disability

Abstract

The Australian National Disability Insurance Scheme (NDIS) is attempting to address long-term inequalities experienced by people with disability. Planning is central to the NDIS. People with intellectual disability will be the largest group of NDIS participants, and their perspectives are underrepresented in the literature. It is important to understand how they experience and perceive NDIS planning. Ten adults with intellectual disability participated in semi-structured interviews to explore their experiences of NDIS planning. Data were analysed using Braun and Clarke's (2006, Qualitative Research in Psychology, 3, 77) six stages of thematic analysis. Six themes were identified: planning preparation not fit for purpose, creating goals, goals not met, planning not meeting real needs, lack of choice and control and importance of relationship with planner. In principle, the NDIS presents a real opportunity to increase the choice and control, social and economic participation, and independence of people with disability; however, this does not always translate into practice for people with intellectual disability.

Controlled choice, not choice and control: Families' reflections after one year using the National Disability Insurance Scheme

“…Early qualitative research investigated NDIS participant experiences and found issues with NDIS planning support and expertise, and lack control over decisions and resources (Perry et al, 2019). This qualitative study investigated the perspectives of eight adults with intellectual disability and found that participants also experienced better social and economic participation.…”

The Shifting Risk of Homelessness among Persons with a Disability: Insights from a National Policy Intervention

“…To some extent, previous work predicts this patterning, suggesting that a combination of exclusion and system complexity may be drivers. Without advocacy and assistance, some people with these types of disabilities are likely to find it difficult to navigate a complex assistance system [16], and some individuals may miss out entirely [17]. The importance of addressing homelessness risk for these groups is all the more important when we consider the very high prevalence of these disability types among NDIS recipients-two thirds of all current recipients, for example, are diagnosed as having autism or some type of intellectual or psychosocial disability, or brain injury [18].…”

Dedifferentiation and people with intellectual disabilities in the Australian National Disability Insurance Scheme: Bringing research, politics and policy together

“…Lloyd et al (2019) concluded that the adults in their study were "not a contributing member of the planning team for most of the plans developed" (p. 8). Findings by Collings et al (2019) and Perry et al (2019) illustrated the dangers of reliance on informal decision support identified in the literature. For example, 27 of the 28 participants with intellectual disabilities reported that a family member who supported them largely determined what was included in their plans, and at times overrode, failed to listen to or silenced the adult's own perspective.…”

“…These broad trends of poor experiences of choice and control, and little change in participation in mainstream community activities were reflected in three qualitative studies of planning experiences of adults with intellectual disabilities (Collings et al, 2019;Lloyd, Moni, Cuskelly, & Jobling, 2019;Perry, Waters, & Buchanan, 2019). The majority of the 38 adults in these studiesmost of whom had mild or moderate intellectual disabilities had been excluded from any meaningful engagement in planning and relied heavily on their parents to lead the process.…”