Engaging with National Disability Insurance Scheme Planning: perspectives of parents of an adult with intellectual disability

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

“…Another noted of the process that there was "too much red tape, too many steps, too many papers, too many workers who don't know what they are doing" (CID, 2019, p. 1). 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.…”

“…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.…”

“…Both parents and the adults with intellectual disabilities who were interviewed in these three studies expressed concerns that planning processes had not been well attuned to their needs (Collings et al, 2019;Lloyd et al, 2019;Perry et al, 2019). The adults felt their longer-term aspirations or real needs had not been captured, particularly around greater independence and intimate relationships.…”

Real change or more of the same? Analysing Australian media's portrayal of intellectual disability during the NDIS rollout

“…This may reflect media assumptions that people with intellectual disability must be spoken for but not spoken with. This is somewhat unsurprising considering that even those working in disability service provision have been deemed to lack necessary skills to engage with people with intellectual disability (Lloyd et al, 2020;Perry et al, 2019). Progress in this space may therefore be reliant on disability specific training for journalists and media to enhance their capacity It should be acknowledged that choosing parents as advocates does not necessarily reflect the media's rejection of disability rights.…”

“…This issue appears two‐fold; Firstly, the person with intellectual disability was largely absent from the decision making in part due to a lack of skills by NDIS planners engaging with people with intellectual disability; secondly, parents reported a lack of options for inclusive community‐based activities for their family member (Lloyd et al, 2020). Although Lloyd et al's (2020) sample was small, similar issues have been reported in a qualitative study interviewing 10 adults with intellectual disability (Perry et al, 2019). Perry et al (2019) found that these adults experienced similar barriers engaging in decision making with NDIS planning failing to meet their needs.…”