The perspective of NDIS participants and their family members or carer
In wave 1, NDIS participants were unclear about what constituted ‘reasonable and necessary’ supports, particularly in regards to transport. There was considerable evidence about how little people sought for themselves, either through not knowing what would be reasonable to request or through not wishing to prevail on others or be viewed as ‘a burden’ on society.
In wave 2, respondents remained unclear about what supports were considered reasonable and necessary by the NDIA. For some respondents this confusion was exacerbated by the inconsistency among NDIA staff about what could and couldn’t be included in NDIS plans. Other respondents were unsure about what supports were available or what they could ask to have included in plans.
Carers’ needs were not prominent in the plans, and funding for this was limited.
Well I don’t think I rate too much of a mention in that area. (F04_C W2)
They were very clear about that; the plan is for (name) they are not in the business of supporting the carers, other people get funded to do that. (F01 PWD & C W2)
The perspective of people with disability not participating in the NDIS
Many respondents in the comparison site also indicated a lack of, or limited funding for disability supports and services. This included restricted funding for personal support or respite hours, home modifications and transport.
Some non-NDIS participants indicated that these gaps in funding led them to have out-of-pocket expenses. The impact of limited funding for transport was particularly problematic, with significant costs involved in travelling long distances to access services, or to enable the person with disability to connect with family and country. Others noted the financial impost of acquiring vehicles suitable for wheelchairs or of disability adapted recreational equipment (both required to facilitate the independence and participation of the person with disability).
The perspective of the service provider and peak body organisations
Peak bodies and disability service providers considered that NDIA staff in the NT lacked the disability specific skills and experiences required to understand what were reasonable and necessary supports.
I suppose when the planners sort of are, don’t necessarily have the skills to identify, oh okay this is clinically indicated, or this is, yeah this is necessary. (F12S W2)
Some respondents claimed that NDIA staff did not utilise reports from allied health professionals when assessing appropriate supports to include in plan. Planners were reported to ‘receive reports but they don’t actually read them’ (F18S W2) and don’t ‘necessarily understand the recommendations’ (F06P W2).
They always throw the line back at you, ‘Oh, we only fund what’s reasonable and necessary.’ And I just say straight back, ‘Well, the physio has recommended this. This person needs this equipment, so clearly it is reasonable and necessary.’ Yeah, they don’t have that background, like I said before, so that’s where it falls apart I think in that part. (F18S W2) The perspective of the NDIA staff
In wave 1 NDIA staff reported that communicating the concept of ‘reasonable and necessary’ supports was a key component of the planning process. Although staff did not feel that this was understood well by participants,
Challenges remained around enabling participants to understand that there were supports available to them.
I think it’s more about getting people in the Barkly to understand that they, there are supports there. You don’t have to just make do. So I think there’s a bit of work there that needs to be done. [NT09N W1]
In wave 2, however, NDIA staff were not confident that the concept of reasonable and necessary supports had been successfully communicated to, and understood by, participants.
Moreover, it was observed that the determination of what can be considered reasonable and necessary supports was now conducted through internal decision making about the funding for supports rather than being shared with participants. There were indications that the new customer relationship management (CRM) system facilitated this decision making for NDIA staff.
I think we’ve used ‘reasonable’ and ‘necessary’ more so under the decision tree to work out what we think is reasonable and necessary to make a decision on the delegate’s behalf, but I don’t think most of our participants have exercised that real decision-making or thought on what they think is reasonable and necessary. (F12N W2)
Well it’s all in the CRM now, like, before we used to have to do a manual decision tree which really made you think about it. So, and you had to, it was quite wordy ‘cause you had to but now when you, in the CRM when you get to the end, you submit your plan it’s all there. You’ve still got to put in why it’s reasonable and necessary ‘cause obviously someone else has to approve it but it’s much simplified, so just you slide the button, yes it’s approved or yes it’s, I mean, you wouldn’t put it in there if it wasn’t reasonable. (F15N W2)
Participation (Social, Economic and Educational), Wellbeing, and Aspirations (Goals)
11.8.1 Wellbeing, social, educational and economic participation
The perspective of NDIS participants and their family members or carer
For NDIS participants
In wave 1, there were some improvements in wellbeing, quality of life and social participation for those NDIS participants in the Barkly trial site who were involved in the development of their NDIS plans or had strong advocates.
There wasn’t a lot going for him. He would just be either in the wheelchair or on his mattress that he was sleeping with on the floor. So through NDIA coming he’s been able to receive funding for a hospital bed that suited to his needs. So it started from having access to the therapies that he needs like the OT coming to assess him, everything that he needs. So he’s come from sleeping on a dirty mattress with really not much there to a nice comfortable safe hospital bed and a good wheelchair that’s accessible for him but also, like, play mats and things that he doesn’t have to be in the wheelchair all the time. … just looking at him of interacting with the others and he just seems in a better place and just happier.’ (F21_C W1)
However, the full extent of possible improvements to wellbeing and quality of life were constrained by limited disability services being available.
For others who remained unclear or uninformed about the NDIS, the impact on their lives was negligible.
In wave 2, respondents continued to report some positive impacts of the NDIS for participants. Most commonly cited were benefits from equipment provision; in particular equipment supporting mobility had led to opportunities for greater community access and social participation.
The impact of my new chair, because, yes, it’s been a good impact on my ability to be out and about… it’s given me a better frame of mind, more positive attitude… And all the social benefits. Because this chair can lift up to high level sitting, so communicating with people at eye level, but also can stand fully vertical and then talk to people just normal, normal conversation. (F01_PWD&C W2)
Several respondents noted the positive impact of engaging in activities and community access, in some instances supported by disability support workers. However, in most cases, satisfaction about increased social participation were tempered by concerns about a lack of skill development being funded or delivered to these participants which limited their future potential.
He was a young man, about 27 years old, who'd never ever experienced much outside of Tennant Creek. And so the NDIS has been invaluable... since he's been with the NDIS he's been to football games in Sydney… he's gone (elsewhere) for some Gospel stuff as well... He probably just needs someone to actually look at his life, look at all the options that he has, and direct him to those. Because he is so high functioning. If there was a computer course in Tennant Creek and he could be directed to it and helped… he certainly needs someone to help gather all those threads that were happening for him and like tie it together so that it became something that would enhance his life. And develop his skills. (F18_C W2)
Finally, although evidence of increased economic participation amongst NDIS participants was very limited, several respondents did report NDIS participants entering employment as a result of their involvement in the NDIS.
She works two hours a week at (local organisation), and then she has four other hours during the week where she goes to the (disability service provider) team, and hopefully this job that's coming up (in another organisation), she'll have work three hours Monday, three hours Friday, and then the other days, Tuesday, Wednesday, and Thursday, she'll have a couple of extra hours at (local organisation during summer)… So there's small things in the pipeline. It's just been a long process. (F24_C W2)
For carers
In wave 1, several respondents noted positive outcomes for carers and families as a result of the NDIS. These included reduced concern about who would care for the NDIS participant in the future; and financial relief as a result of NDIS funding items previously being paid for out of household income. The NDIS was also thought to have improved the physical wellbeing of some carers with the provision of new equipment for the NDIS participant. As one mother revealed: ‘It’s really good, getting more service now… got nothing before…they bought him (a) new hoist, before I use to lift him up with my hands and I hurt my back.’ (F13_C W1)
In wave 2, respondents again reported positive outcomes for families and carers as a result of the NDIS. For many there was also a sense of relief that the support needs of the person for which they were caring were no longer solely their responsibility, particularly as they aged.
I appreciate the whole thing about NDIS coming and working in with giving (NDIS participant) that support at the ground level through (provider organisation). You know now and it’s taken a lot of pressure off me as you can imagine. (F03_C W2)
(I’m) more relaxed. You know, because he’s doing things for himself… because that’s what I want him to do. So he can be independent when I get old or something else happen. (F14_C W2)
Others advised that supports funded for participants within NDIS plans had provided carers with opportunities to contemplate employment or study.
Right now with the support (NDIS participant is) getting it just frees me up. To do more study. To do travel, to work. So I'm not worrying about him, you know. Sitting at home and doing nothing. (F03_C W2)
The perspective of the service provider and peak body organisations
In wave 1, while the full impact of the Barkly NDIS trial was yet to be realised, it was anticipated that the NDIS would bring beneficial outcomes for people with disability. The person-centred philosophy of the NDIS was expected to empower people with disability and enable them to have increased control over their supports. It was also anticipated that by being enabled to direct their own goals and supports, the quality of life for NDIS participants would be improved.
In wave 2, the impact of the NDIS on wellbeing was mixed. Some peak bodies and disability service providers reported that there had been an overall improvement in the wellbeing of participants as a consequence of better access to equipment and assistive technology that suited their needs. Improvements were also noted in the lives of people with disability needing supported accommodation.
However, some respondents considered that there had been little improvement in the wellbeing of people with disability and their families and carers under the NDIS. This was due to the poor quality of some NDIS plans which failed to adequately address participant needs.
In particular, there were concerns that the number of people with disability living in the Barkly region was considerably higher than the number of NDIS participants identified and with active plans. There were also concerns about service gaps for people with mental health conditions who were deemed ineligible for the NDIS, people with disability who were homeless and those transitioning out of the justice system.
In wave 1, disability service providers and peak bodies reported little evidence of increased social participation as a result of the NDIS trial in the Barkly region. However, at the time of these interviews few NDIS plans had been implemented in the trial site.
By wave 2, evidence of an increase in social participation among NDIS participants in Tennant Creek was emerging. Examples cited included clients attending Men’s Shed, more people with disability being visible in the community and an increase in the frequency of community outings for some people living in supported accommodation. However, other respondents did not believe that social participation had improved for NDIS participants, in part due to few options in remote locations.
In wave 1, disability service providers and peak bodies provided no evidence of increased economic participation amongst NDIS participants in the Barkly trial site, again in the context of few implemented NDIS plans. However, several peak bodies were enthusiastic about the potential of the NDIS to facilitate economic participation in future including in remote aboriginal communities.
A lack of employment opportunities throughout the Barkly region, including Tennant Creek, was highlighted in the wave 2 interviews as a barrier to increased economic participation for people with disability. Consequently, evidence of increased economic participation as a result of NDIS funded supports was limited to individual examples. These included two NDIS participants who had entered employment, a single parent of a child with disability able to return to work, and the partner of an adult with disability able to increase work hours and travel for work. There was no evidence reported of the NDIS impacting on employment opportunities in remote Aboriginal communities.
The perspective of the NDIA staff
Overall, it was believed that the NDIS had a positive impact on the wellbeing of participants. Staff felt that ‘the people feel that the trial is theirs (F01N W2)’ and that it had made a difference in people’s lives, especially because prior to the NDIS many of the participants had not been receiving any supports.
Improving the social participation of NDIS participants was a primary focus for NDIA staff in wave 1. In particular, efforts centred on the provision of cultural activities and supports which increased community inclusion.
In wave 2, NDIA staff reported focusing on providing people with funding for mobility aids and community participation supports. These included the provision of activities such as cultural outings, and taking participants to musical and sporting events.
One concern for NDIA staff around social participation was the need to go beyond simply delivering supports around attending community events to provide services that built capacity and helped people with disability to interact more fully with their community.
In wave 1 NDIS staff observed that improving the economic participation of NDIS participants in the Barkly region was problematic due to the lack of employment options in the region. Although a few isolated examples of progress in this area were cited, overall staff felt that they more systematic approaches were needed around economic participation goals.
At the wave 2 interviews, the economic participation of participants continued to be much less of a focus for NDIA staff than was social participation. NDIA staff were again able to cite a few isolated examples of people with disability or their family and carers making progress towards their employment goals. In particular, it was noted that a number of participants had been employed as staff within the NDIA.
