Issues in the interface between the disability, aged care and health sectors were reported to be negatively impacting upon the availability and provision of supports for older people with disability.
The current interface between the disability and aged care systems was seen as being unclear; as a consequence it was feared that some older people with disability who were not part of the NDIS were missing out on needed services.
Prior to the NDIS rolling out if you had younger onset dementia, so under 65 with a dementia diagnosis, it was considered to be an age-related illness so you had to receive your services through the aged care sector….Because not everything has rolled out, we’re kind of straddling these two systems. But because My Aged Care are saying we’re for people over 65, they’re really cracking down on providing any service to anyone under 65 and are really pushing back with our clients and saying no, no, no, we can’t service them, they have to get a service through the NDIS. [But if] you’re not rolling out with the NDIS until 2019, and you need a service now, where do you get it from? It’s a massive issue. We’ve got a whole bunch of clients sitting there who are not in receipt of services and need it and cannot get it from either system. (OPS04P)
A lack of clarity in the interface between the NDIS and the health sector was also perceived to compromise the funding and supports available to older people with disability. Some people were being found to be ineligible to join the NDIS, while others within the NDIS were denied funding for specific supports if their needs were seen as being primarily health rather than disability-related. Particular issues were described for older people experiencing disability due to health conditions, stroke and progressive neurological conditions.
We see the NDIS turning down things that they say are health conditions and are refusing to provide support. I think the NDIS has a very shallow understanding of what the interface between NDIS and health actually looks like. So for an individual that has a number of different health conditions the health treatment for each of those conditions individually is not going to be necessarily sufficient to minimise the functional impairment that comes from the combination of health conditions. And so they don’t have a very nuanced understanding of that and the fact that having multiple health conditions leads to disability which is separate from the health condition itself. (OPS11P)
NDIS in the NT (with a focus on the Barkly trial site)
Integrated findings
This section summarises the qualitative findings relating to the roll-out of the NDIS in the remote Barkly region of the NT.
The NDIS evaluation in the remote Barkly region finds that:
While awareness of the NDIS improved with time, understanding of the NDIS and its processes remained low;
supply of disability services was inadequate prior to the NDIS and did not improve despite the new funding;
there was limited evidence of new providers entering the region and the market size remained inadequate to support additional service demand;
shortages in the disability workforce were coupled with the NDIA workforce encountering continual challenges;
while attempts were made over time to adapt NDIS processes to local need, this was made difficult with the high turnover in the NDIA workforce;
choice and control remained an almost theoretical concept and the processes were challenged by the virtual absence of a viable market;
outcomes for NDIS participants were variable and were poorer for those living in remote Aboriginal communities;
strong advocacy had led to improvements in services and levels of social participation for some participants;
wellbeing was improved for some families and carers, but the majority of people with disability did not record higher wellbeing; and
the number of participants in the NDIS did not reflect the high levels of disability within the region. The NDIS trial in the Barkly region was never expected to be an easy task, but at the end of the evaluation period is was still felt that both its approach and implementation were ineffective and that the NDIS had not managed to adapt sufficiently to the specific needs of the region.
The evaluation of the NDIS in the Barkly
In local Indigenous contexts, disability is an increasingly common phenomenon that communities are still struggling to understand and incorporate into cultural explanations of health and wellbeing.
Discussions about disability are not straightforward, as Indigenous definitions of health place less emphasis on physical concerns and more on a holistic sense of wellbeing. There is also often a reluctance to discuss disabilities as some Indigenous people may feel or believe that speaking about such issues aloud can aggravate matters for the individuals concerned. These beliefs are more likely among remote populations and less so among town-based populations.
Considerable prevalence of disability exists within the Barkly region. Furthermore, a high incidence of chronic health conditions which predisposes people to disability, through amputations or other impairments, was evident.
Family members provide much of the care for people with disability; for Aboriginal people, the responsibility is determined by roles under kinship systems. However, many carers had their own existing or looming health and support needs, adding to the impact of disability on the community.
The health and support needs of NDIS participants and their carers in the Barkly region were substantial. Mobility, housing, home modifications, and transport supports were the major requirements of many of the people with disability interviewed.
The evaluation of the NDIS in the Barkly region posed a number of challenges including the high mobility of the local population, isolated travel and associated issues of safety, cultural activity, gate-keeping, vicarious and intergenerational trauma and cross-cultural communication.
Many NDIS participants in the Barkly trial site had minimal understanding of their NDIS support plan and this did not change over time. For those who were aware of their NDIS plan, satisfaction with funded supports was variable. Some participants were now receiving additional supports while others reported gaps in the services funded under the NDIS. The NDIS had had a positive impact on access to equipment and in particular the availability of mobility aids. However, a lack of adequate funding for transport, respite, support coordination and skill development was noted.
The NDIS had led to little improvement in the supply and quality of disability services within the Barkly trial site. As a consequence the types of disability supports able to be accessed by NDIS participants did not change over time.
Although peak body and service provider organisations reported that the NDIS had led to increased funding for disability supports, participants were not necessarily receiving more services and high levels of unmet demand due to a lack of service provision were being experienced. Unmet demand was particularly reported for allied health services and respite.
The disability sector and its workforce
Limited evidence was observed of new providers entering the disability service market within the Barkly region. Moreover, concerns were expressed that the small number of new providers who had begun to offer services in the area, would choose to withdraw when the NDIS roll-out expanded into the larger population sites of Darwin and Alice Springs.
A lack of market development was attributed to the small numbers of NDIS participants within the trial site and a lack of provider experience and infrastructure for remote service provision. NDIS pricing structures were also not felt to be adequate because of the higher costs of providing disability supports in remote areas.
The NDIS had also not had an impact on the size or diversity of the disability workforce in the Barkly region. Worker recruitment and retention continued to be problematic, and a lack of provision within NDIS funding for staff training further stymied workforce development.
The NDIA workforce within the Barkly trial site had also encountered challenges. At least initially, insufficient numbers of local Aboriginal staff had been employed which impacted upon the capacity of the NDIA to engage with Indigenous people with disability. Although NDIA staff reported good working relationships within their team, difficulties adjusting to working in an isolated area were commonly experienced by staff who were new to the region.
Choice and control
NDIS planning processes were considered by participants and carers to be too bureaucratic and difficult to navigate. Plan development was perceived to work better for people with good English literacy and/or computer skills and for those with strong advocates. The quality of the plan was also dependent upon the skills and knowledge of the NDIA planner. Understanding of processes of plan development and implementation was reported to be particularly poor for many Aboriginal participants which adversely impacted upon levels of choice and control.
Limited evidence of the impact of the NDIS on the choice and control people with disability had over their supports was found at both waves 1 and 2. Non-Indigenous participants and those who were self-managing their NDIS funding were reported to exercise greater levels of choice and control. A lack of local disability service provision was a primary impediment to enhanced choice and control.
The self-management of NDIS funding was very uncommon amongst participants in the NT trial site. While self-management was seen as providing opportunities for increased choice and control over service providers and budgets, the associated administrative requirements were considered challenging. Concerns were also expressed that self-managed funding could leave some NDIS participants at risk of exploitation.
Reasonable and necessary
Understanding amongst NDIS participants and their carers of the concept of ‘reasonable and necessary’ supports remained low throughout the evaluation. This lack of understanding was exacerbated by variability in the supports included by the NDIA staff in participant plans. Many NDIS participants were also unsure as to the types of supports they could request to have included in their plans.
Participation (social, economic and educational), wellbeing and aspirations (goals)
Some improvements in wellbeing and social and economic participation were noted for NDIS participants who were actively involved in support planning or had strong advocates. Access to mobility aids had improved the community participation and autonomy of some NDIS participants. The wellbeing of carers had also been improved through the provision of new equipment to NDIS participants and greater funding of supports was reported to have reduced financial burden.
Improvements to wellbeing and participation were not being experienced by all NDIS participants in the Barkly trial site. Moreover, progress towards enhanced wellbeing and social and economic participation were constrained by the limited availability of disability services and a lack of employment opportunities within the region.
Understanding of the use of goals and aspirations to inform support planning was challenging for many NDIS participants in the Barkly region. Inadequate time was considered to have been allocated to discussions around goals and aspirations and the appropriateness of this approach when working with Aboriginal people was questioned.
Awareness and understanding of the NDIS and its processes was greater amongst non-Indigenous participants. While awareness of the NDIS grew over time, knowledge of the NDIS remained limited for people with disability living in remote Aboriginal communities. This was in part a consequence of a perceived lack of effective engagement between the NDIA and local communities.
The number of people with disability participating in the NDIS was felt to underestimate the total prevalence of disability within the Barkly region. Access to the NDIS for people with mental health conditions, the homeless, those in the criminal justice system and people with disability who had not previously accessed services prior to the NDIS was a particular concern.
The NDIS was viewed as not having been adapted to fit the specific circumstances of the Barkly region. In particular, the NDIS’s focus on disability was considered to be too narrow in the context of pressing health and social issues within remote Aboriginal communities. In addition, the individualised approach of the NDIS was considered inappropriate when working with Indigenous people with disability. The adoption of a model which was more culturally sensitive and appropriate to remote needs and service delivery was recommended. Concerns were also expressed that the lessons learned from the Barkly trial site were not being used to inform the roll-out of the NDIS in other remote areas.
Mainstream interface
Little change occurred over time in the type and frequency of the mainstream and community services being utilised by NDIS participants. A lack of clarity between the disability and health sectors, however, was described regarding respective funding responsibilities and eligibility criteria for entry into the NDIS.
