Does the NDIS promote Fairness, Equity and Accessibility?
In both wave 1 and 2, NDIS participants and their family members or carers provided feedback about the equity and fairness of the NDIS. An overview of the key findings are provided below. In Appendix 8.3 we provide three composite case studies to show variability in ‘typical’ outcomes for different groups of NDIS participants. The three composite case studies illustrate the characteristics of those who typically record: ‘positive’ experiences; ‘middle way’ experiences; and ‘negative’ experiences of the NDIS.
8.4.1 Equity and fairness for NDIS participants and their family members or carer
In both wave 1 and 2 respondents felt that those with limited literacy skills, minimal experience with the sector or lacking capacity to self-advocate would struggle to get the best out of the opportunity presented by the NDIS.
If people have been in group homes and parents haven’t had the opportunity to learn maybe some of the stuff I’ve learnt, then are they asking - especially when the individual can’t speak for themselves - are they asking for something that’s actually going to give this person a better life? Do they know that they could have? (C11C W2)
These people that I know that haven't bothered with the NDIS or are leaving, it's because they can't speak up, they can't write well... they can't speak the language, they can't be bothered. (C12C W2)
Perceptions of fairness were also based on continued observations of ongoing inconsistencies across plans for people with equivalent disabilities.
No, [it’s] absolutely not [fair]. Because I know how much I got for Robbie first time around and I know the children… from his early intervention group didn't even get half of what I got. (C12C W2)
The importance of advocacy (whether by a formal advocate or a parent/carer) to ensure that all participants achieved equitable access to funding was highlighted at both time points. However, advocacy was not being funded under the NDIS.
As soon as you bring an advocate in the standard of service you get improves vastly. (B05 PWD W2 PWD)
I think the parents who jump up and down and send things back for reviews... get more. (C03C W2)
The role of the advocate ranged from requesting services to address participant needs, suggesting new ideas to respondents, and acting as a conduit for communication between the participant and NDIA representatives. The following carer described how she thought the content and quality of NDIS plans was largely determined by the extent of advocacy:
And one of the things that the whole plans come down to is advocacy. If you haven’t got a good advocate to make the plans, you're in trouble. So whether you're advocating for yourself or you have somebody advocating for you, you've got to have that advocacy in there. If you haven’t got that you can't speak up and say what your needs are, or have someone who really knows you say what your needs are, you're going to get a very ordinary plan. (B03C)
Respondents represented a broad range of socio-economic circumstances, including living in metropolitan and regional centres. As previously noted, the primary concern for those living in regional areas was the limited availability of services. Respondents were faced with the potentially costly decision to travel to access supports elsewhere, or to wait until services could be sourced locally.
The sample also reflected a mix of participants with different diagnoses. The main observable differences related to those with psychosocial disability who appeared to have poorer outcomes than respondents with physical support needs, who were typically better able to articulate their needs.
Feedback from respondents in wave 2 also indicated broad concern about the situations of low income families, and the potential for children in such families to ‘miss out’ on social and recreational activities because their parents were not in a position to pay for these.
8.4.2 Equity and fairness for people with disability not participating in the NDIS
Non-participants considered that people with physical disability had easier pathways into the NDIS. People with mental health problems (psychosocial disabilities) were more likely to receive advice that they would be ineligible for the NDIS, or to have applied to the NDIS and been found ineligible. While this may reflect a selection bias of those choosing to take part in the evaluation interviews, it also appeared there was confusion among NDIA staff about the boundaries between health and disability services for people with psychosocial disabilities, and less understanding of the support needs of this cohort.
Concerns were expressed that people with disability who are unable to participate in the NDIS may have less access to disability services and supports in the future, and would, therefore, receive fewer services than those who are part of the NDIS. This suggests the potential for inequity and points to the need for additional supports to ensure decisions of eligibility to the NDIS are based on full and complete information. It is of concern that most respondents had no knowledge of the potential of the NDIS to help them access mainstream and community services as part of ILC.
8.4.3 Equity and fairness through the eyes of the service provider and workforce stakeholder organisations
As in wave 1, the NDIS was widely considered by providers and workforce stakeholder organisations to be working particularly well for articulate English-speaking participants and their families who were able to express and assert their needs. Particular client groups who were thought to be having good outcomes under the NDIS, included people with physical disability, acquired brain injury, and prosthesis needs. NDIS participants with access to formal advocacy services were also noted to achieve better outcomes.
If you’re educated, middle-class, white person, it’s fine, it works well, you can pick your services, pick what you want and it’s very empowering. (03R W2)
The ones that do well are the articulate ones, the assertive ones, and the ones who invest time, energy and potentially their own resources in doing a lot of pre-plan research, pre-plan discussion with service providers, and also potentially engaging their own advocate to be with them in the planning sessions. (A01S W2)
However, the NDIS was not seen to be having positive outcomes for all participants.
When it works it works well but it’s not working well enough. (16R W2)
Those more vulnerable to poorer outcomes included participants with intellectual disability and/or complex needs; from CALD communities; those experiencing mental health, substance abuse, or forensic issues; and older carers who were socially isolated and had their own health issues. These vulnerable groups were considered to receive less funded supports in their NDIS plans than others with similar support needs and to struggle with NDIS processes.
Those who do not have the time, energy, inclination … level of understanding, who are challenged by their overall family circumstances, they generally do not achieve the plans with the quantum of money, nor the degree of detail of specificity of connection between the particular goal and the disability support that’s been approved. (A01S W2)
Considerable concerns were raised in wave 2 regarding service provision for people with disability who were not part of the NDIS. A reduction of state-provided disability services was reported to be occurring and this was having an adverse impact on the services for this cohort. Some existing disability clients were noted to be receiving fewer services than previously, while others were falling through gaps in service provision and were getting no supports at all. It was feared that more of these individuals would be affected if state governments continued to withdraw from the provision of disability services.
The state disability services have been reducing and pulling back so they can wind down and so what’s happened is there’s a group of people that have had services that, because the therapy providers are no longer there, they are not getting what they used to get and in fact may not end up with very much at all. (11R W2)
Several respondents also noted inequity in service provision across sectors; older people with disability outside the NDIS were reported to be receiving significantly different services to their younger counterparts in the NDIS and were less likely to have their needs met.
People that are outside of 65 years of age are already starting to receive significantly different services…The gap that’s in the state scheme in terms of funding is now very clear, what those differences are going to be. Their goals are less likely to be met. (12R W2)
Finally, respondents were not satisfied that safeguards to protect vulnerable NDIS participants were effective. Several providers were concerned that the NDIA had still not released a quality framework to ensure quality service provision by providers. Advocacy services were considered important to safeguard NDIS participants but some providers suggested that these services were more likely to be utilised by those for whom the NDIS was already working well rather than more vulnerable NDIS participants and families.
Often it’s the more articulate, confident people who actually have the confidence to access advocacy. Often really vulnerable people don’t have the confidence… you actually have to be quite empowered to actually go through that process. (B02S W2)
Even accessing advocacy is another one of those situations where you’ve got to articulate your needs. (C04S W2)
8.4.4 Equity and fairness through the eyes of NDIA staff
NDIA staff considered that those participants and families who were confident, educated and able to articulate their support needs had better outcomes than those with less capacity to understand and navigate the NDIS. This latter group included participants with intellectual disability and some older participants. Also considered disadvantaged were participants with less obvious disability, and those for whom the NDIS design fit less well such as those involved in the criminal justice system and some people with psychosocial disability of an episodic nature.
Various safeguards were reported to have been put in place for vulnerable participants. These included the provision of assistance in implementing plans by LACs and PSCs. Respondents also identified the use of advocacy services, informal supports and mainstream services as possible safeguards around decision-making. In addition, some NDIA staff advised that risk assessments were conducted by agency staff for participants and appropriate safeguards were put in place. There were also reports of ongoing projects around supported decision making being conducted within the NDIA.
NDIA staff identified a range of hurdles to meeting the needs of, and working with, participants from Aboriginal and Torres Strait Islander and CALD backgrounds. These ranged from a lack of direction from national office ‘around how you work in a culturally appropriate or sensitive way (D02N)’ to poor NDIS take up among people with disability from Aboriginal and Torres Strait Islander or CALD backgrounds. Further barriers included the lack of translated and culturally appropriate resources, and limited staff awareness of cultural understandings of disability and cultural preferences around supporting these cohorts.
Some respondents noted problems in accessing interpreters to take part in planning sessions, and of working with interpreters who were unable to communicate with participants effectively. Several respondents reported the low percentage of staff within the NDIA who themselves identified as being from CALD or Aboriginal and Torres Strait Islander backgrounds. This was considered to be a barrier to engaging these communities. The location of the NDIA offices in some trial sites (which were associated with government departments such as Centrelink) was viewed as creating further barriers to effective engagement with these populations groups.
In wave 2 NDIA staff reported a number of strategies which had been implemented to improve engagement with Indigenous people with disability. These included liaising with organisations that had established relationships with Aboriginal and Torres Strait Islander groups, provision of training for staff around working with Indigenous populations, and developing working groups dedicated to assisting participants who identify as Indigenous.
