The perspective of NDIS participants and their family members or carer
In wave 1, experiences of the processes of plan development varied across individuals. Plan development worked well for people with good English literacy and/or computer skills and those with strong advocates. However, a number of Aboriginal participants were unaware of the process for developing plans and therefore had limited or no control.
I think I’m lucky because I know these sort of forms and I’ve been there before, but I think for some other people it’s really hard and it needs to be broken down so that it’s in English that people can understand. (F24_C W1)
Respondents were frustrated that NDIA staff were not more prescriptive about what could be included in plans and thought there should have been greater engagement with local and potential service providers prior to opening the NDIA offices.
The only thing that was frustrating me was the fact that nobody at the time knew what the hell was going on, like I was ringing them up and saying, ‘What service is being provided?’ and they're like, ‘Oh, we have to wait to the services to sign up.’ And I said, ‘Well, have you got anything signed up?’ and they weren’t able to tell me. (F06_C W1)
In wave 2, a similar lack of involvement in planning and review processes was frequently reported. This included legal guardians who expected to be included in these processes.
No, we weren’t included…I don’t know who attended with her to be quite honest. It sort of seemed to be very much driven by NDIS… I haven’t gone back through the files to kind of see how that fell off and how she ended up with this plan without any kind of proper planning. (F21_C W2)
Amongst those who had been involved in the planning development process there were further concerns that NDIA staff were not listening to participants, carers or family and their input was not necessarily reflected in completed plans. Confusion amongst some respondents about whether a planning conversation had taken place, or if a NDIS plan was in existence, continued in wave 2.
In wave 2, goals and aspirations remained a limited concept amongst participants in the Barkly site, with non-Indigenous carers or guardians more often using this language and citing goals for those they were caring for rather than participants articulating goals for themselves. There were concerns of a lack of time for an adequate discussion of goals and aspirations to occur, and a need for more contact, or a different approach, when working with Aboriginal people was recommended.
It was also evident that many NDIA participants who were interviewed for the evaluation were unaware of supports and services they could potentially ask to be included in their plans. Such supports included equipment and home modifications. For example, one woman, who cared for a husband with an amputated leg, when asked about what would she like to make things easier, said after considerable thought that she would ‘…like a milk crate (F05_C)’, so her husband could sit down in the shower.
Across the respondents, a strong theme of self-sufficiency was expressed. People asserted their independence and capacity and their wish to ensure they were not ‘a burden’ to anyone. For Indigenous participants in particular, but not exclusively, people did not like to see themselves as a person with disability or in need of help from others. This contributed to a lack of engagement with the planning process and plans not meeting needs.
In both wave 1 and 2, the process of plan implementation was not clear with respondents believing that the responsibility for implementing NDIS plans lay with the NDIA and not individual participants. Some respondents attributed delays or inaction implementing funded supports to a lack of expected follow up or assistance from NDIA staff. In one example, a visually impaired NDIS participant had been funded and delivered a computer with a braille function by the NDIA but had not used the computer as he was ‘still waiting for them to come back and set it up for me’ (F09_PWD W2). In the absence of knowledge to the contrary this respondent believed that the setting up his computer was an NDIA responsibility.
Respondents identified NDIA staff turnover and/or lack of availability as contributing to the delays and lack of continuity experienced with planning and implementation.
In wave 2, several respondents noted that support coordination services were particularly important to plan implementation. However, a lack of support coordination included in NDIS participant plans in the NT was reported.
The perspective of the service provider and peak body organisations
In wave 1, peak bodies and disability service providers had limited experience of NDIS planning processes due to the small number of plans developed at the time.
In wave 2, there were concerns that the plans being developed may not truly reflect the needs and wants of Aboriginal people with disability. This was seen to be exacerbated by insufficient time available for NDIA staff to undertake the engagement work needed to establish effective relationships and better discern the needs and desires of Aboriginal participants. Many respondents considered the NDIS planning process to be very bureaucratic and difficult to navigate for participants and their families and reported that the online portal was not useful for those without access to technology.
In wave 2, respondents also identified the importance of involving third parties in developing and reviewing plans to ensure that plans were achievable and met the needs of individual participants.
The Office of Guardian … make sure that the plan is achievable and is what’s required to continue to support the person that actually has the plan, realistic rather than pie in the sky. (F03P W2)
While including more services and supports over time, peak bodies and disability service providers considered NDIS plans to be of poor quality. They were described as ‘very poorly written’ (F04S W2) and ‘completely inadequate’ (F13S W2) for clients with complex needs and in some instances were considered to not be tailored to individual needs.
We have seen some cases where the plan is nothing. It just seems like they have… It’s like a tick and a flick… Give everybody the same and ... Pump them out. (F09S W2)
Respondents attributed poor quality NDIS plans to a lack of both experience and skills amongst local NDIA staff and poor knowledge about possible appropriate supports for many NDIS participants. The ability of participants and families to articulate their needs effectively also impacted on the quality of the plan.
None of them have a health background, so they’re allocating things in people’s plans and funds and services when they have no idea what services someone with a certain disability needs… when I get these plans that just make absolutely no sense for a certain type of disability, and that comes down to the planner has no idea what they’re doing. (F18S W2)
Our clients here also, some of them don’t understand their own disabilities, so they don’t know the services that they need, so they aren’t able to speak up about what they think that they need as well. (F18S W2)
Processes introduced by the NDIA to assist staff in the Barkly site with planning decisions were considered inadequate.
This morning the planner pulled out a World Health Organisation disability tool and started asking questions of the person and it’s just so off the mark... You know in the last 30 days have you been able to walk a kilometre without help? What’s a kilometre?... type in these answers to this new system on her computer and it tells us what the plan needs to look like. And that just terrifies me. I asked about the cultural considerations. ‘Oh no culture doesn’t come into,’ she said. (F13S W2)
Finally, there was some tension around the idea that goals and aspirations shaped the NDIS plans. Some believed that the concept of goals and aspirations could be problematic for Aboriginal NDIS participants who may be focused on more immediate needs.
Because if you ask these families what they want, they would say, ‘We want some food. We want some help to buy some clothes. We want a swag. We want somewhere to stay tonight… it’s been our experience … that people think very much in the moment – ‘What do I need now?’ It’s very hard for families to think about the future when they’re struggling in this moment. (F04P W2)
However, while acknowledging this, others considered it to still be important that goals and aspirations were recorded to ensure supports could reflect what Aboriginal participants wanted.
I think culturally that whole thing about goals and aspirations can be a bit difficult. But essentially that’s a document where they get to say what support they want and for what reason… I don’t think it’s accurately doing that yet but… it’s there and at least that we’re all orienting around that rather than working on what we think that that person should get or do or whatever. (F04S W2)
In wave 1, NDIA staff reported that a low number of plans had been completed due to difficulties finding and engaging participants. It was observed that given the context of the Barkly region they needed to work differently to other less remote trial sites. Plan development required longer time and more face-to-face contact to build trust and relationships. Support planning also often took place in different settings (e.g. in the front yard under a tree rather than inside the participant’s home) and with more people involved (i.e. extended family and neighbours).
At the time of wave 2 interviews, NDIA staff again highlighted the need to work differently when developing plans in the region in order to establish trust with the participant. Indeed, trust was thought to be even more important with this group of participants than was goal setting. One-on-one, face-to-face discussions with participants were considered integral to this process of building trust and rapport.
Ours is more one-on-one too, but the questions, I guess the information that we need to collect has been more personal, so that’s been an interesting, that’s been definitely a difference in planning. (F12N W)]
Flexibility was considered by a number of NDIA staff to be key in successfully conducting plan development, particularly when working in communities. Another successful strategy for plan development was to be able to show participants concrete examples of how supports and services had worked for other people in the community.
‘Look this is what’s happened to X, Y, because we sat down and we had a plan, and now that person has a wheelchair’ or ‘That person can get to school’ and it’s showing those concrete examples of what we would do. (F09N W2)
A lack of available services in the region was a significant challenge to plan implementation for NDIA staff. In particular, concerns were voiced about the lack of allied health services in the region and the dearth of disability services for those living in communities beyond Tennant Creek.
So you know the plans themselves it looks great on paper, the next step of actually ensuring you know services made it to those communities that was – that was probably the bigger challenge. (F04N W2)
11.6.2 Choice and control over supports
The perspective of NDIS participants and their family members or carer
In wave 1 a number of participants expected improved choice and control over disability supports would occur with the arrival of the NDIS.
Yes it sounded – it was very positive thinking that yes I’d be able to get the higher assistance that I need which is outside of the hours which my current service provider works which is eight until four and so I thought yeah, great to be able to manage that and have the ability to choose the products that I need to use and not just get told this is what’s available but have more choice with that. (F01_PWD & C W1)
Few participants though were confident about how to choose service providers, preferring to rely on the NDIA for this. Only a minority of respondents reported that they were well-connected with disability services and felt confident in searching out service options. The new reality that people were no longer constrained by local or even NT based providers with the NDIS was not clearly understood; only the non-Indigenous participants seemed fully aware of this option.
In wave 2, there was little change evident in how NDIS participants chose their service providers. As in wave 1, those exercising choice were non-Indigenous and self-managing NDIS funds; some had been able to access therapy services outside the region.
The lack of local disability services was evidenced to be the main impediment to improved choice and control in both waves 1 and 2.
Before the NDIS I was receiving support with Home and Community Care… I’m still using their services now that I’m in the NDIS because they are the only support people available but I’m fortunate that they are a really good bunch of people as well.... there are no other service providers. (F01_PWD W1)
There is no personal choice because there is nothing to choose from. Those fundamental things are just completely missing. (F21_C W2)
Some respondents attempting to access alternative service providers when implementing their NDIS plans expressed concerns about a lack of organisations willing to provide services outside normal business hours.
Yeah in theory. In practise they don’t provide services after hours or on weekends….That’s outside the brief of NDIA. They can’t demand what service providers do, it’s a business… if it’s not in their interest to provide you can’t force them to or they’ll go broke. Because (name) needs half an hour support on a Saturday night… she needs support to get to bed but if they call someone in they have to pay them three hours overtime which costs them a bomb but we can’t reimburse them for three hours overtime, we can only reimburse for the NDIS agreed rate for the amount of time that (name’s) had help. Which means they are significantly out of pocket to do anything for (name) out of hours. (F01_PWD & C W1)
However, there was some limited evidence that service providers in NT were slowly adapting to the NDIS and becoming more flexible in their service practices.
I do feel I have autonomy in we’re not just doing what they dictate... my now that we’ve been doing NDIS for a while, (service provider is) comfortable with knowing that they’re personal care assistance with me is not limited to what they were restricted with earlier in the different funding before I went into NDIS… Well there was no disability… So it had to be an aged care package because it was the only thing that even remotely fitted, but it didn’t fit very well as you can imagine… And if it wasn’t part of the each package then they couldn’t do it. Yeah. And quite often we got services because that was what we could provide rather than that was what (was) needed. (F01_PWD&C W2)
The perspective of people with disability not participating in the NDIS
A limited provision of disability services in the comparison site also restricted options for people with disability not participating in the NDIS to change services.
Services could improve… cause there’s a lot of people with disabilities in this town, with physical or mental. The services are lacking. (F02 C C W1)
Even when services were available, some respondents described the problem of having infrequent service provision. This was especially apparent in relation to allied health therapies and led to concern about the detrimental impact for the developmental progress of young children with disabilities.
You get a speech therapist, she had one last year that came in and did a couple of things on her… But you wouldn’t see one for two or three years… And if they do, if something is doing there’s only so many lessons that they’ll, or appointments you can have… And no-one comes back. You don’t hear of them again. (F01 C C1 & C2 W1)
One respondent was quite frustrated by perceptions of his disability service providers failing to listen to his needs, thus limiting his options for choice and control.
I normally get staff telling me what I'm doing at a certain time. Instead of getting asked what I'd like to do, or if I want to be involved. (F05 C PWD W1)
Indigenous people with disabilities appeared disproportionally impacted by limited availability of, and options for choosing, their disability support workers. Examples were given of staff providing culturally inappropriate care. This situation was thought to be exacerbated by the perceived lack of safety in Town Camps and constraints this imposed on service provision: ‘Most of the current service providers who do personal care and housekeeping and shopping won’t go into the camps here’ (F05 C C W1).
The perspective of the service provider and peak body organisations
In wave 1, among the peak bodies and disability service providers, there was evidence of support for the NDIS principle of choice and control. Some respondents considered that the focus on participant choice made providers more accountable. There was, however, common acknowledgment that choice was, and continued to be, considerably constrained in the Barkly trial site due to a lack of disability services and providers, particularly in remote Aboriginal communities. Scant evidence was therefore provided of increased choice and control for people with disability with the roll-out of the NDIS. Some respondents concluded that the NDIS model which assumed enhanced participant choice would generate increased competition in the disability services market was unsuitable in the Barkly trial site.
In wave 2, while choice was still ‘very limited’ it was ‘heading in a positive direction’ (F03P W2). Most observations about increased choice concerned NDIS participants having more say in choosing what they wanted, particularly around equipment provision.
It’s good that the NDIS is actually rolling out across the Territory, gives a different perspective and gives people a bit more of a, what do you call it, and whether it be choice or not we don’t know, but it’s that concept of choice and that ability to say, ‘Well, I can buy whatever I want. If I want to go, I’ve got this, then I can buy, I’ll go down to Adelaide, I can access this,’ and it’s something that’s never been there before, and that’s new. (F07S W2)
However, in wave 2 it was again commonly reported that a lack of service providers in the Barkly region restricted choice and the appropriateness of the NDIS model for remote regions continued to be questioned.
The perspective of the NDIA staff
In wave 1 NDIA staff were focused on building capacity for participants to be able to exert choice and control over their services. Particular focus was given to Aboriginal participants who had often been afforded little or no say over their services or other aspects of their life in the past.
NDIA staff in wave 2 provided limited examples of participants exercising increased choice and control. These examples focused on participants requesting particular types of mobility aids and different service providers. Further promotion of the concepts around choice and control had been undertaken with participants and interpreters used to allow participants to speak for themselves and make their own choices.
No, they’ve made some new changes. There’s some participant made new changes with their plans this year…Yeah, now they’re asking for a lot of different other things now…People are asking to get out, like some people, they want to change their type of mobility they’ve got, you know, the mobilised wheelchairs, they want to get better ones that’s got more stuff on it. And…Yeah, some people ask for different type of service now, they want, change from their other service to another service. (F17N W2)
The lack of a provider market within the Barkly region was seen as being a major barrier to effective choice and control. Also given the historic lack of choice around service provision for the Indigenous population in the region, many Aboriginal participants were reported to find this concept difficult to understand and put into practice.
So it’s a very long journey and I think that’s going to take a lot of years and that’s no different over here as well because people are used to being told what they can have. All of a sudden we’re saying well actually you can choose. (F05N W2)
People aren’t used to choice and control, definitely not used to the choice, that’s for sure. (F12N W2)
11.6.3 Self-management
The perspective of NDIS participants and their family members or carer
In wave 1, only two participants were self-managing their NDIS funding; these were non-Indigenous people, with strong English literacy skills and high levels of awareness of the requirements for self-management. One Indigenous participant proficient in English felt she would like to undertake self-management with appropriate training, yet this option had not been put to her. Another Aboriginal respondent believed that staff had advised that self-management was not an option at this stage.
In wave 2, self-management remained uncommon amongst respondents, however, four respondents now reported self-managing all or part of their own or their family member’s NDIS plan. These respondents had good English literacy skills and self-management was not restricted to non-indigenous participants. Offers to self-manage from the NDIA remained inconsistent; several respondents reported being offered the option while others stated it was not discussed with them during interactions with NDIA staff. There was some evidence that NDIA staff were providing more information and support for self-management than in wave 1.
Self-managing provided opportunities for increased control over budgets and supports and increased choice of service provider.
Challenges reported by those undertaking self-management included the administrative requirements. There were also concerns about the need to pay up front for services before being reimbursed by the NDIA and a lack of clarity about legal liability if using unregistered service providers. Concerns were also expressed that self-management could leave some NDIS participants vulnerable to exploitation or ‘humbugging’ by family members and others.
‘No, I'd rather someone manage it, because there's too much... other people that can't be trusted…I would manage it myself, because I'd understand. But what I see in a lot of my people, they still don't understand how to manage money. And then on the other hand they have families that will take, take a lot. I see it all the time. They'll take a lot of money off family members that don't know how to manage their own money. (F01_PWD & C W1)
The perspective of the service provider and peak body organisations
In both wave 1 and 2, disability service providers and peak bodies offered very few insights into the self-management of NDIS funding in the Barkly trial site. Providers had limited experience of self-managing participants in the trial site.
Several respondents noted particular barriers to self-management for Aboriginal NDIS participants and families including problems of trust with government programs, financial abuse and a lack of capacity to self-manage due to language barriers.
The perspective of the NDIA staff
In both wave 1 and 2 NDIA staff reported that the incidence of self-management in the Barkly region were very low. Those few participants self-managing their plans were observed to be non-Indigenous. Although acknowledging that further work needed to be done around self-management, NDIA staff reported that this was not a current priority within the trial site.
Challenges to self-managing in the Barkly region centred on concerns about the suitability and capacity of participants to self-manage. This included the lack of access to IT resources and therefore use of the portal, as well as concerns about the risks of exploitation and ‘humbugging’. In addition, NDIA staff acknowledged a lack of interest in self-managing by participants, who were seen as not being keen to take on the associated responsibilities.
