The perspective of NDIS participants and their family members or carer
In wave 1, there was limited awareness of the NDIS among participants in the Barkly trial site, particularly Indigenous respondents, even though they had been identified by NDIA to the evaluation team as having already been accepted into the NDIS. For those who were aware of the NDIS, expectations were mostly positive, although there was confusion about what supports could be funded and a more pervasive confusion about the role of the NDIA overall. People with disability participating in the NDIS mostly hoped for greater access to services, such as after-hours support, respite, and transport.
In wave 2, expectations and enthusiasm for the NDIS had diminished as expected benefits failed to eventuate for many NDIS participants. Confusion about the NDIS and the role of the NDIA; a lack of resources and infrastructure; and a lack of sufficient disability services and supports all contributed to a sense that the NDIS had not lived up to expectations.
Many NDIS participants were either unsure if they had a plan or, if aware of the plan, had minimal knowledge of its content or processes relevant to it. There was little evidence of change in the level of awareness relating to NDIS plans over time.
For those who were aware of having an NDIS plan, levels of satisfaction with their funded supports varied. Some respondents were extremely satisfied that they were now receiving services and support previously unavailable to them, while others were very dissatisfied and considered that the supports they needed were either underfunded, missing from plans or not delivered.
The most commonly funded supports included in NDIS participants’ plans in the NT were equipment and therapy. Other supports included transport, supported accommodation, community participation, respite, personal care and development of daily living skills. There was little evidence of change in the levels or types of supports and services included in NDIS plans over time.
The most obvious change in disability supports in the region was in relation to equipment provision. In particular, a significant increase in the number of people using mobility aids in the community was noted. Equipment most commonly provided included scooters, gophers and walking frames to assist with mobility, and in several cases hoists and shower chairs to assist families to better provide personal care.
(In the last 12 months) we did get him a new wheelchair...He got the new chair now. We also have the hoist that we needed. (F16_C W2)
While nearly a third of NDIS participants had been provided with equipment since the introduction of the NDIS in the region, others were still seeking to have equipment included in their plans. There was evidence of a lack of clarity and consistency about what equipment could be funded in NDIS plans, particularly assistive technologies.
So for example like one of the things we originally were told that they could have a learning iPad, [Name] could apply for a learning iPad, to help with his speech… When the lady first signed us up... she was the very first one who said about the learning iPad....she was great at explaining it but then when I tried to start putting some of that through with (NDIA staffer) last year… everything I suggested I just kept getting knocked back on. Saying no we don’t do that, no we don’t do that, no we don’t do that and then I get told yesterday yes in fact we do do that. (F06_C W2)
So we need a screen reader at (service provider), we need a screen reader here (at home)… You know we need those types of things and we’re not, they’re not in the plan at the moment so we haven’t got them. (F37_C W2)
Respondents identified transport, respite, support coordination and developing skills for daily living as supports that were either not included or not funded sufficiently in NDIS plans.
The perspective of people with disability not participating in the NDIS
The types of disability supports and services non-NDIS participants in the comparison group were receiving included accommodation, equipment, advocacy, case management, attendance at day programs (including an Australian Disability Enterprise), respite, personal care, therapies and travel and transportation.
A few respondents stated that they had little or no disability supports in place. For some, the reason why they were not currently receiving disability supports was a result of their own choosing and a capacity to manage with informal support arrangements. For others, the lack of supports were a result of a shortage of service providers, poor knowledge of what services were available, and a sense of personal responsibility by their carers.
Well, we don’t know (about services), but then again, we don’t make a lot of noise about it either, we just get on with it... Well, she’s my responsibility. And as long as I can look after her, I will. (F11 C W2)
Most non-NDIS participants were receiving supports and services from the NT Government (e.g. Department of Health and Office of Disability). However, some were receiving services as part of a compensation payment (e.g., Motor Accident Compensation Scheme, or through victims of crime or workers compensation programs).
The perspective of the service provider and peak body organisations
In wave 1, respondents from service provider and peak body organisations considered that the NDIS had brought little change to service provision.
By wave 2, many people with disability participating in the NDIS were reported to be receiving more services than prior to the NDIS, including access to services for people who had previously not received any disability supports.
I met people that had never had services ever, that have had a disability their entire life. Like a 40-year-old, actually maybe 50, sorry, had never received any type of services because no department or no service had ever picked up on him. So once NDIS arrived and they found him and he got services… it did give a big sense of, ‘We’ve got support.’ You know, it’s not all up to the family to look after and provide all that support … so NDIS has been a big help in the community, which was definitely needed. (F18S W2)
NDIS participants were felt to be better able to access equipment that suited their needs. The availability of increased supported accommodation services for people with disability in Tennant Creek was positively attributed to the NDIS and meant these participants were ‘definitely mixing with people of their own age, which is good’ (F06S W2) rather than being placed in aged care facilitieswith older people.
There were reports, however, that the number of hours of support coordination being funded in NDIS plans was inadequate, particularly for Aboriginal clients living in remote communities.
In wave 1, disability service providers and peak bodies expressed concerns that the NDIS had been rolled out without an adequate understanding of how to engage and deliver services to Aboriginal people with disability, particularly those living in remote communities. A current lack of disability service provision within the Barkly region was perceived to undermine the operationalisation of core NDIS principles such as individualised services and participant choice and control.
In wave 2, concerns remained about the effective delivery of the NDIS in remote locations. Disability providers and peak bodies viewed the NDIS as being Eastern-centric and the NDIA as being unwilling to adapt the NDIS to the specific circumstances of the Barkly region. The adoption of a model more appropriate to remote service delivery was recommended.
And it’s working successfully in all those big cities no doubt but here it is going to be very tough unless they make some big changes into that or they just make participants sit into one place. (F09S W2)
Respondents expressed concerns that lessons from the Barkly trial had seemingly not informed the further roll-out of the NDIS in the NT or other remote locations across Australia.
The success of the NDIS in the Barkly region was seen to strongly depend on market development and the increased provision of disability services; this would both address current unmet demand for services and provide some choice for service users. The financial viability and sustainability of disability service provision under individualised NDIS funding, however, was identified as a barrier to market development.
Turnover of NDIA staff in the Tennant Creek office had affected relationships between providers and the NDIA. This had led to earlier connections no longer being relevant and some providers struggling to establish good working relationships with NDIA staff.
The perspective of the NDIA staff
NDIA staff reported that the type of disability services available in the region were primarily focused on community access, coordination of services and daily living.
There was concern from NDIA staff that choice over the type of services able to be accessed by participants had not altered over time and remained constrained even with the introduction of new providers.
11.4.2 Quality of services and supports
The perspective of NDIS participants and their family members or carer
While there were accounts of satisfaction with particular providers, complaints about disability service quality predominated.
Because [name of service provider] are incompetent, they couldn’t manage their way out of a paper bag … I wanted to remove the management of [NAME’S] care plan from their hands because in my opinion they were incompetent to do it. So I certainly wasn’t going to give them a heap load more money to keep doing a bad job. I thought I could do it better just to put it bluntly. (F01_C W1)
Most complaints about service quality centred on concerns about the lack of skills, training and experience amongst support staff and high staff turnover. However, many respondents also acknowledged the difficulties of recruiting and retaining a skilled workforce in a remote region.
The level of staff training and/or experience in working with clients with disability is extremely poor... I think it’s the remote experience is that the workforce is always going to be either a transient type population and/or people who are coming with very little skills and experience. And the other aspect is that the attrition is huge. (F37_C)
NDIS participants mentioned staff turnover within disability support agencies as a significant issue. High staff turnover resulted in new staff being uniformed of the specific care needs of the person with disability, and restricted progress towards outcomes and the development of effective relationships between staff and clients. High staff turnover also impacted on service quality and continuity.
The perspective of people with disability not participating in the NDIS
Several non-NDIS participants indicated being satisfied with their disability supports and services, but noted this was the result of considerable advocacy on their own part.
A larger number of respondents expressed dissatisfaction with available supports. Reasons for dissatisfaction were principally related to the quality of disability support workers or programs offered by providers, high staff turnover within agencies, and unreliability of care arrangements.
Once I get that change, fluctuation of carers, that's when everything just goes back to square one. (F05 C PWD W1)
Respondents also reported concerns that some NDIS plans were of poor quality and did not adequately address support needs or fund sufficient hours for support services to be effective. Poor quality plans were attributed to NDIA staff lacking skills and experience and also a lack knowledge about possible and appropriate supports amongst some NDIS participants and families which constrained their ability to speak up about their support needs.
The perspective of the service provider and peak body organisations
Representatives from service provider and peak body organisations reported few instances of improvements in the quality of disability services. One peak body noted, ‘I think there have been improvements in the quality of supported accommodation... But again, it's coming at the low base’. (F02P W2)
11.4.3 Unmet demand for services and supports
The perspective of NDIS participants and their family members or carer
High levels of unmet demand were reported by NDIS participants and their carers in the Barkly region.
So overall? I think the frustration has been in knowing yes we’ve been approved funding for services but being remote the service providers… so nearly a whole year and we’ve spent two per cent [of NDIS funding in plan]…..Because we can’t access stuff yes. It’s all very well to be allowed to buy things but if there’s no-one selling you know, you can’t buy services that don’t exist. Unless we move and then we’re outside the NDIS sphere of influence anyway. (F01_C W1)
A third of NDIS participants reported having therapy services included in their NDIS plans, but most were unable to access these supports due to insufficient service provision in the region. There were also some reports of reductions in therapy services occurring, including those delivered in remote Aboriginal communities and some fly-in services no longer travelling to Tennant Creek.
The package is more than adequate. It's not something I can complain about. Accessing the therapy is the hardest. He's had four appointments this year, and they've all fallen through... he hasn't been able to see a therapist this year at all, (they keep changing the appointments), or they're overbooked. That's been really disappointing… They are good. I can't complain with it, because they are supported. But at the same time, because they are good, they're in demand. (F33_C W2)
Having visited some of the other (remote) communities, they said we used to get physios visiting, we used to get OTs visiting, now the NDIS has been rolled out we’re not getting that. (F21_C W2)
He was seeing a really good OT for his first two and a half years, and she worked up a really good rapport. She's both registered with NDIA and with the original grant that he was under. Only the place that she works with, they stopped her travel down here because they were trying to encourage an OT placement here in Tennant Creek. (F33_C W2)
As in wave 1, access to respite care continued to be limited as were education and support services for children with special needs.
A lack of services, especially allied health services in Tennant Creek, also impacted on obtaining the assessments required to access NDIS supports. Particular concerns were raised about problems with equipment repair and the provision of some assistive technology such as bed lifters which were reliant on an OT assessment before being sourced from interstate.
The lengthy wait times for disability supports experienced by many participants in other trial sites were seemingly nominal when compared to the wait times to receive a service through NDIS funding in the NT. Many respondents in the NT reported they were still waiting on supports that had been funded in NDIS plans more than 12 months previously.
Those seeking to access services outside of the region to overcome the problem of insufficient local service provision were sometimes constrained by travel costs, as a funding for travel was not being included in NDIS plans.
If I took (NDIS participant) to services elsewhere I have to actually pay to get him there myself because … In this, the last 12 months no they only allowed $528.00 in that (for travel). (F06_C W2)
The perspective of people with disability not participating in the NDIS
There was also considerable unmet demand for services for people with disability in the comparison site of Alice Springs, again resulting from a lack of service providers due to the remote location.
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)
The perspective of the service provider and peak body organisations
In wave 1, peak bodies and disability service providers reported that a lack of expansion in disability support provision since the introduction of the NDIS meant that the availability of these services remained limited for people with disability living in the region. There was a concern that the lack of new providers since the NDIS trial began, alongside a winding back of services by the NT Government, had resulted in less disability services than prior to the NDIS.
In wave 2, peak bodies and disability service providers reported that despite some increase in service provision, this was still not adequately addressing need in the region. Also, respondents contended 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.
In the Northern Territory, we already had a huge pool of people that need services and a limited number of people that can provide that because of the limitations of our environment, and I don’t know that the core numbers or the core needs with the NDIS rolled out is going to be terribly different to what it actually already is now. (F06P W2)
It was acknowledged that the Northern Territory Bilateral Agreement (COAG 2014) included a ‘provider of last resort’ to ensure services continued. However, there was continued confusion about how this would work in practice alongside the NDIS.
